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Sample records for medical end-of-life decisions

  1. [End-of-life care and end-of-life medical decisions: the ITAELD study].

    Miccinesi, Guido; Puliti, Donella; Paci, Eugenio

    2011-01-01

    To describe the attitudes towards end of life care and the practice of end-of-life medical decisions with possible life-shortening effect among Italian physicians. Cross sectional study (last death among the assisted patients in the last 12 months was considered). In the year 2007, 5,710 GPs and 8,950 hospital physicians were invited all over Italy to participate in the ITAELDstudy through anonymous mail questionnaire. Proportion of agreement with statements on end-of-life care issues. Proportion of deaths with an end-of-life medical decision. The response rate was 19.2%. The 65% of respondents agreed with the duty to respect any non-treatment request of the competent patient, the 55% agreed with the same duty in case of advanced directives, the 39% in case of proxy's request. The 53% of respondents agreed with the ethical acceptability of active euthanasia in selected cases. Among 1,850 deaths the 57.7% did not receive any end-of-life medical decision. For a further 21.0% no decision was possible, being sudden and unexpected deaths. In the remaining 21.3% at least one end-of-life medical decision was reported: 0.8% was classified as physician assisted death, 20.5% as non-treatment decision. Among all deceased the 19.6% were reported to have been deeply sedated. Being favourable to the use of opioids in terminal patients was associated to non-treatment decisions with possible but non-intentional life shortening effect; agreeing with the duty to fully respect any actual non-treatment request of the competent patient was associated to end-of life medical decisions with intentional life-shortening effect (adjusted OR>10 in both cases). The life stance and ethical beliefs of physicians determine their behaviour at the end of life wherever specific statements of law are lacking. Therefore education and debate are needed on these issues.

  2. Medical futility in children's nursing: making end-of-life decisions.

    Brien, Irene O; Duffy, Anita; Shea, Ellen O

    Caring for infants at end of life is challenging and distressing for parents and healthcare professionals, especially in relation to making decisions regarding withholding or withdrawal of treatment. The concept of medical futility must be considered under these circumstances. Parents and healthcare professionals should be involved together in making these difficult decisions. However, for some parents, emotions and guilt often are unbearable and, understandably, parents can be reluctant to make a decision. Despite the recognition of parental autonomy, if parents disagree with a decision made by medical staff, the case will be referred to and solved by the courts. The courts' decisions are often based on the best interest of the child. In this article, the authors discuss the concepts of 'parental autonomy' and 'the child's best interests' when determining medical futility for infants or neonates. The role of the nurse when caring for the dying child and their family is multifaceted. While nurses do not have a legitimate role in decision making at the end of life, it is often nurses who, through their advocacy role, inform doctors about parents' wishes and it is often nurses who support parents during this difficult time. Furthermore, nurses caring for dying children should be familiar to the family, experienced in end-of-life care and comfortable talking to parents about death and dying and treatment choices. Children's nurses therefore require advanced communication skills and an essential understanding of the ethical and legal knowledge relating to medical futility in end-of-life children's nursing.

  3. Medical futility in children's nursing: making end-of-life decisions.

    Brien, Irene O

    2012-02-01

    Caring for infants at end of life is challenging and distressing for parents and healthcare professionals, especially in relation to making decisions regarding withholding or withdrawal of treatment. The concept of medical futility must be considered under these circumstances. Parents and healthcare professionals should be involved together in making these difficult decisions. However, for some parents, emotions and guilt often are unbearable and, understandably, parents can be reluctant to make a decision. Despite the recognition of parental autonomy, if parents disagree with a decision made by medical staff, the case will be referred to and solved by the courts. The courts\\' decisions are often based on the best interest of the child. In this article, the authors discuss the concepts of \\'parental autonomy\\' and \\'the child\\'s best interests\\' when determining medical futility for infants or neonates. The role of the nurse when caring for the dying child and their family is multifaceted. While nurses do not have a legitimate role in decision making at the end of life, it is often nurses who, through their advocacy role, inform doctors about parents\\' wishes and it is often nurses who support parents during this difficult time. Furthermore, nurses caring for dying children should be familiar to the family, experienced in end-of-life care and comfortable talking to parents about death and dying and treatment choices. Children\\'s nurses therefore require advanced communication skills and an essential understanding of the ethical and legal knowledge relating to medical futility in end-of-life children\\'s nursing.

  4. End-of-life decisions: Christian perspectives.

    Stempsey, William E

    1997-12-01

    While legal rights to make medical treatment decisions at the end of one's life have been recognized by the courts, particular religious traditions put axiological and metaphysical meat on the bare bones of legal rights. Mere legal rights do not capture the full reality, meaning and importance of death. End-of-life decisions reflect not only the meaning we find in dying, but also the meaning we have found in living. The Christian religions bring particular understandings of the vision of life as a gift from God, human responsibility for stewardship of that life, the wholeness of the person, and the importance of the dying process in preparing spiritually for life beyond earthly life, to bear on end-of-life decisions.

  5. Aging Prisoners' Treatment Selection: Does Prospect Theory Enhance Understanding of End-of-Life Medical Decisions?

    Phillips, Laura L.; Allen, Rebecca S.; Harris, Grant M.; Presnell, Andrew H.; DeCoster, Jamie; Cavanaugh, Ronald

    2011-01-01

    Purpose: With the rapid growth in the older inmate population and the economic impact of end-of-life treatments within the cash-strapped prison system, consideration should be given to inmate treatment preferences. We examined end-of-life treatment preferences and days of desired life for several health scenarios among male inmates incarcerated…

  6. Surveying End-of-Life Medical Decisions in France: Evaluation of an Innovative Mixed-Mode Data Collection Strategy.

    Legleye, Stephane; Pennec, Sophie; Monnier, Alain; Stephan, Amandine; Brouard, Nicolas; Bilsen, Johan; Cohen, Joachim

    2016-02-18

    Monitoring medical decisions at the end of life has become an important issue in many societies. Built on previous European experiences, the survey and project Fin de Vie en France ("End of Life in France," or EOLF) was conducted in 2010 to provide an overview of medical end-of-life decisions in France. To describe the methodology of EOLF and evaluate the effects of design innovations on data quality. EOLF used a mixed-mode data collection strategy (paper and Internet) along with follow-up campaigns that employed various contact modes (paper and telephone), all of which were gathered from various institutions (research team, hospital, and medical authorities at the regional level). A telephone nonresponse survey was also used. Through descriptive statistics and multivariate logistic regressions, these innovations were assessed in terms of their effects on the response rate, quality of the sample, and differences between Web-based and paper questionnaires. The participation rate was 40.0% (n=5217). The respondent sample was very close to the sampling frame. The Web-based questionnaires represented only 26.8% of the questionnaires, and the Web-based secured procedure led to limitations in data management. The follow-up campaigns had a strong effect on participation, especially for paper questionnaires. With higher participation rates (63.21% and 63.74%), the telephone follow-up and nonresponse surveys showed that only a very low proportion of physicians refused to participate because of the topic or the absence of financial incentive. A multivariate analysis showed that physicians who answered on the Internet reported less medication to hasten death, and that they more often took no medical decisions in the end-of-life process. Varying contact modes is a useful strategy. Using a mixed-mode design is interesting, but selection and measurement effects must be studied further in this sensitive field.

  7. Medical end-of-life decisions: Does its use differ in vulnerable patient groups? A systematic review and meta-analysis

    Rietjens, J.A.C.; Deschepper, R.; Pasman, R.; Deliens, L.

    2012-01-01

    Medical end-of-life decisions, defined as end-of-life practices with a potential or certain life-shortening effect, precede almost 50% of deaths in Western countries, and receive ample medical-ethical attention. This systematic review aims to detect whether there are differences in the prevalence of

  8. Medical futility decisions and physicians' legal defensiveness: the impact of anticipated conflict on thresholds for end-of-life treatment.

    Swanson, J W; McCrary, S V

    1996-01-01

    Does legal defensiveness significantly influence physicians' assessments of medical futility, in ways that may adversely affect the rights of patients and their family members to make their own health care decisions at the end of life? This exploratory study addresses that question with attitudinal data from a survey of 301 physicians practicing in academic medical centers in Texas. The majority of respondents indicated that the probability of success defining futile treatment should hypothetically be lower for patients with potential to benefit more from life-sustaining medical intervention (e.g. typically patients who are sentient), and higher for patients with less potential to benefit (e.g. patients in a persistent vegetative state). That is to say, physicians normally perceive longer odds to be worth pursuing for greater potential gain - a position that seems logically consonant with patients' rational self-interest. However, physicians with an attitude of extreme legal defensiveness did not fit this pattern. Rather, they tended to define futility in a manner that would maximize the physician's latitude to justifiably oppose patient preferences for end-of-life treatment abatement. These findings suggest that some physicians assume an adversarial position in their consideration of medical futility issues - an attitude that anticipates conflict with terminally-ill patients or their surrogates. The analysis presented here is not definitive, but at least raises the question of whether some physicians may inappropriately use their prerogative over medical futility as a means to guard their professional autonomy against perceived threats.

  9. Attitudes of nursing staff towards involvement in medical end-of-life decisions: a national survey study.

    Albers, G.; Francke, A.L.; Veer, A.J.E. de; Bilsen, J.; Onwuteaka-Philipsen, B.D.

    2014-01-01

    Objectives: To investigate nursing staff attitudes towards involvement and role in end-of-life decisions (ELD) and the relationships with sociodemographic and work-related characteristics. Methods: Survey study among nationally representative Dutch research sample consisting of care professionals.

  10. Attitudes of nursing staff towards involvement in medical end-of-life decisions: A national survey study

    Albers, G.; Francke, A.L.; de Veer, A.J.E.; Bilsen, J.; Onwuteaka-Philipsen, B.D.

    2014-01-01

    Objectives: To investigate nursing staff attitudes towards involvement and role in end-of-life decisions (ELDs) and the relationships with sociodemographic and work-related characteristics. Methods: Survey study among nationally representative Dutch research sample consisting of care professionals.

  11. Aging Prisoners’ Treatment Selection: Does Prospect Theory Enhance Understanding of End-of-Life Medical Decisions?

    Phillips, Laura L.; Allen, Rebecca S.; Harris, Grant M.; Presnell, Andrew H.; DeCoster, Jamie; Cavanaugh, Ronald

    2011-01-01

    Purpose: With the rapid growth in the older inmate population and the economic impact of end-of-life treatments within the cash-strapped prison system, consideration should be given to inmate treatment preferences. We examined end-of-life treatment preferences and days of desired life for several health scenarios among male inmates incarcerated primarily for murder. Design and Methods: Inmates over the age of 45 who passed a cognitive screening completed face-to-face interviews (N = 94; mean age = 57.7; SD = 10.68). Results: We found a 3-way interaction indicating that the effect of parole expectation on desire for life-sustaining treatment varied by race/ethnicity and treatment. Minority inmates desired cardiopulmonary resuscitation or feeding tubes only if they believed that they would be paroled. The model predicting desire for palliative care was not significant. Future days of desired life were related to prospective health condition, fear of death, negative affect, and trust in prison health care. Caucasian inmates expressed a desire for more days of life out of prison, whereas minority inmates did not differ in days of desired life either in or out of prison. Minorities wanted more days of life than Caucasians but only if they believed that they would be paroled. Implications: End-of-life care for the burgeoning inmate population is costly, and active life-sustaining treatments may not be desired under certain conditions. Specifically, expectation of parole but not current functional ability interacts with future illness condition in explaining inmates’ desire for active treatment or days of desired life in the future. PMID:21593007

  12. End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients' rights and end of life.

    Pennec, Sophie; Monnier, Alain; Pontone, Silvia; Aubry, Régis

    2012-12-03

    The "Patients' Rights and End of Life Care" Act came into force in France in 2005. It allows withholding/withdrawal of life-support treatment, and intensified use of medications that may hasten death through a double effect, as long as hastening death is not the purpose of the decision. It also specifies the requirements of the decision-making process. This study assesses the situation by examining the frequency of end-of-life decisions by patients' and physicians' characteristics, and describes the decision-making processes. We conducted a nationwide retrospective study of a random sample of adult patients who died in December 2009. Questionnaires were mailed to the physicians who certified/attended these deaths. Cases were weighted to adjust for response rate bias. Bivariate analyses and logistic regressions were performed for each decision. Of all deaths, 16.9% were sudden deaths with no information about end of life, 12.2% followed a decision to do everything possible to prolong life, and 47.7% followed at least one medical decision that may certainly or probably hasten death: withholding (14.6%) or withdrawal (4.2%) of treatments, intensified use of opioids and/or benzodiazepines (28.1%), use of medications to deliberately hasten death (i.e. not legally authorized) (0.8%), at the patient's request (0.2%) or not (0.6%). All other variables held constant, cause of death, patient's age, doctor's age and specialty, and place of death, influenced the frequencies of decisions. When a decision was made, 20% of the persons concerned were considered to be competent. The decision was discussed with the patient if competent in 40% (everything done) to 86% (intensification of alleviation of symptoms) of cases. Legal requirements regarding decision-making for incompetent patients were frequently not complied with. This study shows that end-of-life medical decisions are common in France. Most are in compliance with the 2005 law (similar to some other European countries

  13. Physician medical decision-making at the end of life in newborns : Insight into implementation at 2 Dutch centers

    Verhagen, A. A. Eduard; van der Hoeven, Mark A. H.; van Meerveld, R. Corine; Sauer, Pieter J. J.

    OBJECTIVE. Decisions regarding end-of-life care in critically ill newborns in the Netherlands have received considerable criticism from the media and from the public. This might be because of a lack of proper information and knowledge. Our purpose was to provide detailed information about how and

  14. Cardiopulmonary resuscitation knowledge and opinions on end of life decision making of older adults admitted to an acute medical service.

    Sharma, Rupali; Jayathissa, Sisira; Weatherall, Mark

    2016-01-08

    To determine the knowledge in cardiopulmonary resuscitation (CPR) process, preference for CPR, and desire to participate in end-of-life decision making amongst older hospitalised patients. We prospectively interviewed 100 participants above 65 years of age awaiting discharge from acute medical ward and collected demographics, knowledge of CPR and opinion on CPR in various clinical scenarios. Amongst the participants, 58% had good understanding of all components of CPR and 91% overestimated its success. Fifty-eight percent wished to have CPR in current health status, but this declined if they were presented a hypothetical scenario of critical illness (46%), functional impairment (17%), terminal illness (13%) and dementia (13%). Tertiary education, male gender and not living alone were associated with accepting CPR. Ninety-three percent were comfortable discussing CPR and 84% felt comfortable documenting their wishes in the medical notes. Seventy percent wished such discussion to include themselves and their family. Older inpatients have a reasonable understanding of the components of CPR and wish to be involved in CPR decision-making. Clinical scenarios with poor prognosis may lead to patients declining CPR. Discussion and documentation of resuscitation wishes is useful in routine assessment process among elderly hospitalised patients.

  15. A survey of views and practice patterns of dialysis medical directors toward end-of-life decision making for patients with end-stage renal disease.

    Fung, Enrica; Slesnick, Nate; Kurella Tamura, Manjula; Schiller, Brigitte

    2016-07-01

    Patients with end-stage renal disease report infrequent end-of-life discussions, and nephrology trainees report feeling unprepared for end-of-life decision making, but the views of dialysis medical directors have not been studied. Our objective is to understand dialysis medical directors' views and practice patterns on end-of-life decision making for patients with ESRD. We administered questionnaires to dialysis medical directors during medical director meetings of three different dialysis organizations in 2013. Survey questions corresponded to recommendations from the Renal Physicians Association clinical practice guidelines on initiation and withdrawal of dialysis. There were 121 medical director respondents from 28 states. The majority of respondents felt "very prepared" (66%) or "somewhat prepared" (29%) to participate in end-of-life decisions and most (80%) endorsed a model of shared decision making. If asked to do so, 70% of the respondents provided prognostic information "often" or "nearly always." For patients with a poor prognosis, 36% of respondents would offer a time-limited trial of dialysis "often" or "nearly always", while 56% of respondents would suggest withdrawal from dialysis "often" or "nearly always" for those with a poor prognosis currently receiving dialysis therapy. Patient resistance and fear of taking away hope were the most commonly cited barriers to end-of-life discussions. Views and reported practice patterns of medical directors are consistent with clinical practice guidelines for end-of-life decision making for patients with end-stage renal disease but inconsistent with patient perceptions. © The Author(s) 2016.

  16. Medical end-of-life decisions in Switzerland 2001 and 2013: Who is involved and how does the decision-making capacity of the patient impact?

    Schmid, Margareta; Zellweger, Ueli; Bosshard, Georg; Bopp, Matthias

    2016-01-01

    In Switzerland, the prevalence of medical end-of-life practices had been assessed on a population level only once - in 2001 - until in 2013/14 an identical study was conducted. We aimed to compare the results of the 2001 and 2013 studies with a special focus on shared decision-making and patients' decision-making capacity. Our study encompassed a 21.3% sample of deaths among residents of the German-speaking part of Switzerland aged 1 year or older. From 4998 mailed questionnaires, 3173 (63.5%) were returned. All data were weighted to adjust for age- and sex-specific differences in response rates. Cases with at least one reported end-of-life practice significantly increased from 74.5% (2001) to 82.3% (2013) of all deaths eligible for an end-of-life decision (p Switzerland, there remains potential for further improvement in shared decision-making. Efforts to motivate physicians to involve patients and relatives may be a win-win situation.

  17. Labelling of end-of-life decisions by physicians

    Deyaert, J.; Chambaere, K.; Cohen, J.; Roelands, M.; Deliens, L.

    2014-01-01

    Objectives: Potentially life-shortening medical end-oflife practices (end-of-life decisions (ELDs)) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices (described according to the precise act, the intention, the

  18. End-of-life practices: The opinions of undergraduate medical ...

    2017-12-01

    Dec 1, 2017 ... illness, injury or other physical or mental condition that, in medical judgment, will .... was all the registered first- to fifth-year medical students at the School ..... patient should have sole responsibility in end-of-life decisions. The.

  19. Factors related to the involvement of nurses in medical end-of-life decisions in Belgium: a death certificate study.

    Inghelbrecht, Els; Bilsen, Johan; Mortier, Freddy; Deliens, Luc

    2008-07-01

    Although nurses play an important role in end-of-life care for patients, they are not systematically involved in end-of-life decisions with a possible or certain life-shortening effect (ELDs). Until now we know little about factors relating to the involvement of nurses in these decisions. To explore which patient- and decision-characteristics are related to the consultation of nurses and to the administering of life-ending drugs by nurses in actual ELDs in institutions and home care, as reported by physicians. We sampled at random 5005 of all registered deaths in the second half of 2001--before euthanasia was legalized--in Flanders, Belgium. We mailed anonymous questionnaires to physicians who signed the death certificates and asked them to report on ELDs, including nurses' involvement. Response rate was 59% (n=2950). Physicians reported nurses involved in decision making more often in institutions than at home, and more often in care homes for the elderly than in hospitals (OR 1.70, 95% CI 1.15, 2.52). This involvement was more frequently when physicians intended to hasten the patient's death than when they had no such intention (institutions: OR 2.05, 95% CI 1.41, 2.99; home: OR 2.04, 95% CI 1.19, 3.49). In institutions, this involvement was also more likely where patients were of lower rather than higher education (OR 2.95, 95% CI 1.49, 5.84). The administering of life-ending drugs by nurses, as reported by physicians was also found more frequently in institutions than at home, and in institutions more frequently with lower rather than higher educated patients (p=.037). These findings raise questions about physicians' perception of the nurse's role in ELDs, but also about physicians' skills in interacting with all patients. Education and guidelines for physicians and nurses are needed to optimize good communication and to promote a clearer assignment of responsibilities concerning the execution of those decisions.

  20. ORIGINAL ARTICLES Medical futility and end-of-life care

    2008-04-01

    Apr 1, 2008 ... It is based on the probability of a treatment not having the desired effect ... as empathetic participants in end-of-life decision-making is underscored. .... growing awareness of the limits of medical science's propensity to cure ...

  1. Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: a national survey of the considerations and beliefs of GPs, ID physicians and care staff.

    Bekkema, N.; Veer, A.J.E. de; Wagemans, A.M.A.; Hertogh, C.M.P.M.; Francke, A.L.

    2014-01-01

    Objective: This paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID). Methods: A survey questionnaire covering decision making

  2. Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: A national survey of the considerations and beliefs of GPs, ID physicians and care staff

    Bekkema, N.; de Veer, A.J.E.; Wagemans, A.M.A.; Hertogh, C.M.P.M.; Francke, A.L.

    2014-01-01

    Objective: This paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID). Methods: A survey questionnaire covering decision making

  3. End-of-life decisions in the intensive care unit

    Jensen, Hanne Irene

    2012-01-01

    be interdisciplinary, but the literature shows that this is not always the case. Research on end-of-life issues in Danish ICUs is limited. Aim The aims of this thesis were to • Examine Danish practices regarding end-of-life decisions in the ICU. • Examine the opinions of nurses and physicians who work in Danish ICUs...... and decision-making. Hypotheses • Nurses, intensivists, and primary physicians have different experiences of interdisciplinary collaboration regarding end-of-life decision-making in the ICU. • Specific interventions targeting end-of-life decision-making in the ICU, such as interdisciplinary audits......Background When making end-of-life decisions in intensive care units, the different staff groups have different roles in the decision-making process and may not always assess the situation identically. Practice recommendations for withholding or withdrawing therapy state that decisions should...

  4. End-of-Life Decisions and Advanced Old Age

    Stoyles

    2014-07-01

    Full Text Available Despite the fact that most people die in advanced old age, little attention is given to cases involving older people in debates about the moral and legal dimensions of end-of-life decision making. The purpose of this paper is to establish some of the ways our discussions should change as we pay attention to important factors influencing end-of-life decisions for people in advanced old age. Focusing on the prevalence of comorbidities and the likelihood that people in advanced old age will experience an extended period of declining function before death, I argue that our debates should be expanded to include greater consideration of how we want to live in the final stages of life. With this, I am arguing against the tendency to think that “end-of-life” decision making concerns only making decisions about when and how it is appropriate to terminate a person’s life. I argue, further, that we should move away from the medicalization of dying.

  5. Key role of social work in effective communication and conflict resolution process: Medical Orders for Life-Sustaining Treatment (MOLST) Program in New York and shared medical decision making at the end of life.

    Bomba, Patricia A; Morrissey, Mary Beth; Leven, David C

    2011-01-01

    In this article, the authors review the development of the Medical Orders for Life-Sustaining Treatment (MOLST) Program and recent landmark legislation in New York State in the context of advance care planning and shared medical decision making at the end of life. Social workers are central health care professionals in working with patients, families, practitioners, health care agents, and surrogates in the health systems and in the communication and conflict resolution process that is integral to health care decision making. The critical importance of ethics and end-of-life training and education for social workers is also addressed. Data from a pilot study evaluating interdisciplinary ethics training on legal and ethical content in communication and conflict resolution skills in health care decision making are reported. Recommendations are made for research on education and training of social workers, and investigation of the role and influence of systems in shaping social work involvement in end-of-life and palliative care.

  6. [End of life decisions, the Dutch form through Spanish eyes].

    Belloc Rocasalbas, M; Girbes, A R J

    2011-03-01

    Abroad, but also in The Netherlands, there are many misunderstandings concerning end of life decisions and euthanasia. In general, euthanasia does not play any role in the intensive care units, simply because it does not fulfill the conditions to carry it out. However, there is still confusion, merely due to the assumption that the Dutch situation is different because of their legislation on euthanasia. The use of the unclear terminology such as "passive euthanasia", "voluntary euthanasia" or "involuntary euthanasia" contributes to the confusion of lay people and physicians, and should therefore be avoided. End of life decisions in intensive care patients are in fact a structural part of work of intensivists. Collecting all necessary information including the wishes and will of the patient, medical expertise and acknowledging limitations of medical treatment will help to determine futility of treatment goals. Once it is determined that surviving the intensive care unit with a quality of life acceptable for the patient is beyond reach, the goal of treatment should be improved and the dying process optimized. Stopping a treatment modality at the request of a will-competent patient or because of futility is not euthanasia. Copyright © 2010 Elsevier España, S.L. y SEMICYUC. All rights reserved.

  7. End-of-life decision making is more than rational.

    Eliott, Jaklin A; Olver, Ian N

    2005-01-01

    Most medical models of end-of-life decision making by patients assume a rational autonomous adult obtaining and deliberating over information to arrive at some conclusion. If the patient is deemed incapable of this, family members are often nominated as substitutes, with assumptions that the family are united and rational. These are problematic assumptions. We interviewed 23 outpatients with cancer about the decision not to resuscitate a patient following cardiopulmonary arrest and examined their accounts of decision making using discourse analytical techniques. Our analysis suggests that participants access two different interpretative repertoires regarding the construct of persons, invoking a 'modernist' repertoire to assert the appropriateness of someone, a patient or family, making a decision, and a 'romanticist' repertoire when identifying either a patient or family as ineligible to make the decision. In determining the appropriateness of an individual to make decisions, participants informally apply 'Sanity' and 'Stability' tests, assessing both an inherent ability to reason (modernist repertoire) and the presence of emotion (romanticist repertoire) which might impact on the decision making process. Failure to pass the tests respectively excludes or excuses individuals from decision making. The absence of the romanticist repertoire in dominant models of patient decision making has ethical implications for policy makers and medical practitioners dealing with dying patients and their families.

  8. Issues surrounding end-of-life decision-making

    Tejwani V

    2013-08-01

    Full Text Available Vickram Tejwani,1,* YiFan Wu,1,* Sabrina Serrano,2 Luis Segura,2 Michael Bannon,3 Qi Qian1 1Department of Medicine, Division of Nephrology and Hypertension, 2Mayo Graduate School, 3Department of Trauma, Critical Care, and General Surgery, Mayo Clinic College of Medicine, Rochester, MN, USA *These authors contributed equally to this work Abstract: End-of-life decision-making is a complex process that can be extremely challenging. We describe a 42-year-old woman in an irreversible coma without an advance directive. The case serves to illustrate the complications that can occur in end-of-life decision-making and challenges in resolving difficult futility disputes. We review the role of advance directives in planning end-of-life care, the responsibility and historical performance of patient surrogates, the genesis of futility disputes, and approaches to resolving disputes. Keywords: end-of-life care, advance directive, surrogate, futility dispute, conflict resolution

  9. End of life decisions in newborns in The Netherlands : medical and legal aspects of the Groningen protocol

    Verhagen, E

    The international press has been full of blood chilling accounts concerning a supposedly new practice in the Netherlands of terminating the life of severely defective newborn babies with a protocol. Our aim is to give insight into the medical and legal aspects of this protocol and to describe its

  10. Labelling of end-of-life decisions by physicians.

    Deyaert, Jef; Chambaere, Kenneth; Cohen, Joachim; Roelands, Marc; Deliens, Luc

    2014-07-01

    Potentially life-shortening medical end-of-life practices (end-of-life decisions (ELDs)) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices (described according to the precise act, the intention, the presence of an explicit patient request and the self-estimated degree of life shortening)they label as euthanasia or sedation. We conducted a large stratified random sample of death certificates from 2007 (N=6927).The physicians named on the death certificate were approached by means of a postal questionnaire asking about ELDs made in each case and asked to choose the most appropriate label to describe the ELD. Response rate was 58.4%. In the vast majority of practices labelled as euthanasia, the self-reported actions of the physicians corresponded with the definition in the Belgian euthanasia legislation; practices labelled as palliative or terminal sedation lack clear correspondence with definitions of sedation as presented in existing guidelines. In these cases, an explicit life-shortening intention by means of drug administration was present in 21.6%, life shortening was estimated at more than 24 h in 51% and an explicit patient request was absentin 79.7%. Our results suggest that, unlike euthanasia,the concept of palliative or terminal sedation covers abroad range of practices in the minds of physicians. This ambiguity can be a barrier to appropriate sedation practice and indicates a need for better knowledge of the practice of palliative sedation by physicians.

  11. End-of-life decision making in the ICU.

    Siegel, Mark D

    2009-03-01

    A large proportion of deaths, particularly in the developed world, follows admission to an ICU. Therefore, end-of life decision making is an essential facet of critical care practice. For intensivists, managing death in the critically ill has become a key professional skill. They must be thoroughly familiar with the ethical framework that guides end-of-life decision making. Decisions should generally be made collaboratively by clinicians partnering with patients' families. Treatment choices should be crafted to meet specific, achievable goals. A rational, empathic approach to working with families should encourage appropriate, mutually satisfactory outcomes.

  12. END-OF-LIFE DECISIONS IN DUTCH NEONATOLOGY

    Moratti, Sofia

    2010-01-01

    This contribution describes the regulation of end-of-life decisions in neonatology in the Netherlands. An account is given of the process of formulating rules, which includes a report by the Dutch Association for Paediatrics, two Court rulings, a report by a Consultation Group appointed by the

  13. Team Leadership and Cancer End-of-Life Decision Making.

    Waldfogel, Julie M; Battle, Dena J; Rosen, Michael; Knight, Louise; Saiki, Catherine B; Nesbit, Suzanne A; Cooper, Rhonda S; Browner, Ilene S; Hoofring, Laura H; Billing, Lynn S; Dy, Sydney M

    2016-11-01

    End-of-life decision making in cancer can be a complicated process. Patients and families encounter multiple providers throughout their cancer care. When the efforts of these providers are not well coordinated in teams, opportunities for high-quality, longitudinal goals of care discussions can be missed. This article reviews the case of a 55-year-old man with lung cancer, illustrating the barriers and missed opportunities for end-of-life decision making in his care through the lens of team leadership, a key principle in the science of teams. The challenges demonstrated in this case reflect the importance of the four functions of team leadership: information search and structuring, information use in problem solving, managing personnel resources, and managing material resources. Engaging in shared leadership of these four functions can help care providers improve their interactions with patients and families concerning end-of-life care decision making. This shared leadership can also produce a cohesive care plan that benefits from the expertise of the range of available providers while reflecting patient needs and preferences. Clinicians and researchers should consider the roles of team leadership functions and shared leadership in improving patient care when developing and studying models of cancer care delivery.

  14. Medical futility and end-of-life care | Sidler | South African Medical ...

    treating physician is responsible for guiding this process by demonstrating sensitivity and compassion, respecting the values of patients, their families and the medical staff. The need for training to equip medical staff to take responsibility as empathetic participants in end-of-life decision-making is underscored. South African ...

  15. End-of-life decisions in Malaysia: Adequacies of ethical codes and developing legal standards.

    Kassim, Puteri Nemie Jahn; Alias, Fadhlina

    2015-06-01

    End-of-life decision-making is an area of medical practice in which ethical dilemmas and legal interventions have become increasingly prevalent. Decisions are no longer confined to clinical assessments; rather, they involve wider considerations such as a patient's religious and cultural beliefs, financial constraints, and the wishes and needs of family members. These decisions affect everyone concerned, including members of the community as a whole. Therefore it is imperative that clear ethical codes and legal standards are developed to help guide the medical profession on the best possible course of action for patients. This article considers the relevant ethical, codes and legal provisions in Malaysia governing certain aspects of end-of-life decision-making. It highlights the lack of judicial decisions in this area as well as the limitations with the Malaysian regulatory system. The article recommends the development of comprehensive ethical codes and legal standards to guide end-of-life decision-making in Malaysia.

  16. Ethical decision-making near the end of life.

    Finucane, T E; Harper, M

    1996-05-01

    For ethical decision-making near the end of life, autonomy is the moral North Star. At the same time, for some treatments, the burdens so clearly outweigh benefits that physicians may make a judgment not to offer the treatment. This is often clearer in surgery. A person with colon cancer and metastases may not insist on resection of the metastases. For some reason, some treatments have escaped these logical constraints. Attempted resuscitation of a dying patient is a good example. The circumstances in which a physician may make choices on behalf of a competent, terminally-ill patient without consent, and even without notification, are hotly debated, but data suggest that physicians do so frequently. Patients who lack capacity present even more difficult challenges. Advance directives, when available, can be extremely helpful, but even with them difficult problems can remain. If advance directives have not been established, family and close friends are an obvious source of guidance. Their legal role varies in different jurisdictions; in practice, they are crucial in bedside decision-making. Guardianship and alternatives to it remain a poor last resort. Euthanasia is a very difficult problem. We believe it is semantically misleading to lump under the term "passive euthanasia" those circumstances where potentially life-sustaining treatment is withheld or withdrawn. The tension between patient autonomy and medical common sense remains unresolved within the "futility" controversy. The authors believe it serves no purpose to discuss carefully with dying patients propositions that are nonsense. At the same time, physicians must not confuse decisions about quality of life with judgements about treatment effectiveness. We believe that what many, although not all, dying patients want are physicians with intelligent compassion who can take care of them through the dying process.

  17. The enactment stage of end-of-life decision-making for children.

    Sullivan, Jane Elizabeth; Gillam, Lynn Heather; Monagle, Paul Terence

    2018-01-11

    Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents' experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process. A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed. Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child's condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people's actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention. Significance of results A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular

  18. When Safe Oral Feeding Is Threatened: End-of-Life Options and Decisions

    Groher, Michael E.; Groher, Tammy Peutz

    2012-01-01

    Managing one's dysphagia at the end-of-life is challenging for the patient and the medical care team. Decisions surrounding oral feeding safety and the use of artificially administered hydration and nutrition require the medical care team to provide its best advice, taking into consideration the patient's health-related goals and the impact the…

  19. Euthanasia and other end-of-life decisions: a mortality follow-back study in Belgium

    Block, L.; Deschepper, R.; Bilsen, J.J.; Bossuyt, N.; Casteren, van V.; Deliens, L.H.J.

    2009-01-01

    BACKGROUND: This study compares prevalence and types of medical end-of-life decisions between the Dutch-speaking and French-speaking communities of Belgium. This is the first nationwide study that can make these comparisons and the first measurement after implementation of the euthanasia law (2002).

  20. Eliciting regret improves decision making at the end of life.

    Djulbegovic, Benjamin; Tsalatsanis, Athanasios; Mhaskar, Rahul; Hozo, Iztok; Miladinovic, Branko; Tuch, Howard

    2016-11-01

    Management choices at the end of life are high-stake decisions fraught with emotions, chief among is regret. Our objective in this paper is to test the utility of a regret-based model to facilitate referral to hospice care while helping patients clarify their preferences on how they wish to spend the remaining days of their lives. A prospective cohort study that enrolled consecutive adult patients (n = 178) aware of the terminal nature of their disease. The patients were at the point in care where they had to decide between continuing potentially 'curative/life-prolonging' treatment (Rx) versus hospice care. Preferences were elicited using a Dual Visual Analog Scale regarding the level of regret of omission versus commission (RgO/RgC) towards hospice care and Rx. Each patient's RgO/RgC was contrasted against the predictive probability of death to suggest a management plan, which was then compared with the patient's actual choice. The probability of death was estimated using validated Palliative Performance Scale predictive model. Eighty-five percent (151/178) of patients agreed with the model's recommendations (p < 0.000001). Model predicted the actual choices for 72% (128/178) of patients (p < 0.00001). Logistic regression analysis showed that people who were initially inclined to be referred to hospice and were predicted to choose hospice over disease-directed treatment by the regret model have close to 98% probability of choosing hospice care at the end of their lives. No other factors (age, gender, race, educational status and pain level) affected their choice. Using regret to elicit choices in the end-of-life setting is both descriptively and prescriptively valid. People with terminal disease who are initially inclined to choose hospice and do not regret such a choice will select hospice care with high level of certainty. Copyright © 2016 The Author(s). Published by Elsevier Ltd.. All rights reserved.

  1. Factors That Impact End-of-Life Decision Making in African Americans With Advanced Cancer

    Campbell, Cathy L.; Williams, Ishan C.; Orr, Tamara

    2013-01-01

    Significance African Americans with cancer are less likely to use hospice services and more likely to die in the hospital than white patients with the same diagnosis. However, there is much that is not understood about the factors that lead African Americans to choose options for end-of-life care. Design A qualitative, descriptive design was used in this pilot study. Methods Interviews were conducted with two groups of African Americans with advanced-stage cancer (people enrolled in hospice and those who were not under hospice care). Findings End-of-life decisions were primarily guided by clinical factors, the patient-related physical, emotional, and cognitive symptoms that are sequelae of the underlying disease or medical treatments. The physician was the healthcare provider most likely to be involved in decision making with patients, family members, and caregivers. Individual factors, such as personal beliefs, influenced end-of-life decision making. Religion and spirituality were a topic in many interviews, but they did not consistently influence decision making. Discussion Future studies should include interviews with family members, caregivers, and healthcare professionals so that factors that impact end-of-life decision making can be fully described. Strategies to facilitate recruitment will need to be added to future protocols. PMID:23645999

  2. [End-of-life in specialized medical pediatrics department: A French national survey].

    Ravanello, Alice; Desguerre, Isabelle; Frache, Sandra; Hubert, Philippe; Orbach, Daniel; Aubry, Régis

    2017-03-01

    In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources, put forward the difficulties encountered by professionals and describe end-of-life paths of children who died in these departments. This study is based on a nationwide survey conducted among all existing specialized medical pediatrics departments (onco-haematology, neurology, reanimation) in France in 2015. Among 94 specialized medical pediatrics departments in France, 53 participated in our survey (response rate=56%). At the time of the survey, 13% of inpatients were facing the end-of-life. Regarding training, 13% of departments did not have personnel trained in palliative care and 21% did not set up any professional support. However, when taking care of a child's end of life in 2014, 77% of these departments solicited a regional resource team of pediatric palliative care. This survey helps describe 225 end-of-life paths of children decease of a terminal illness in the specialized pediatrics departments. Seventy-two percent suffered from refractory symptoms before their death, 64% were concerned by a terminal sedation and 75% by a limitation of life-sustaining treatment decision. End-of-life care is a reality for specialized pediatrics departments. The frequency of major and refractory symptoms often requires the completion of sedation. The resources of service are acceptable but some deficiencies have been noted especially concerning training and support for caregivers, adaptation of premises or family support. Copyright © 2017. Published by Elsevier SAS.

  3. Attitude Towards End of Life Communication of Austrian Medical Students.

    Rumpold, Tamara; Lütgendorf-Caucig, Carola; Löffler-Stastka, Henriette; Roider-Schur, Sophie; Pötter, Richard; Kirchheiner, Kathrin

    2018-04-23

    Medical students have to acquire theoretical knowledge, practical skills, and a personal attitude to meet the emerging needs of palliative care. The present study aimed to assess the personal attitude of Austrian medical students towards end of life communication (EOLC), as key part of palliative care. This cross-sectional, mono-institutional assessment invited all medical students at the Medical University of Vienna in 2015. The assessment was conducted web-based via questionnaire about attitudes towards EOLC. Additional socio-demographic and medical education-related parameters were collected. Overall, 743 medical students participated in the present report. Differences regarding the agreement or disagreement to several statements concerning the satisfaction of working with chronically ill patients, palliative care, and health care costs, as well as the extent of information about palliative disease, were found for age, gender, and academic years. The overall attitude towards EOLC in the present sample can be regarded as quite balanced. Nevertheless, a considerable number of medical students are still reluctant to inform patients about their incurable disease. Reservations towards palliative care as part of the health care system seem to exist. The influence of the curriculum as well as practical experiences seems to be important but needs further investigation.

  4. Influence of physicians' life stances on attitudes to end-of-life decisions and actual end-of-life decision-making in six countries

    Cohen, J; van Delden, J; Mortier, F

    2008-01-01

    AIM: To examine how physicians' life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. METHODS: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland......) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. DISCUSSION: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients...... large life-stance groups in each country. RESULTS: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten...

  5. Preferences for autonomy in end-of-life decision making in modern Korean society.

    Kim, Su Hyun

    2015-03-01

    The demand for autonomy in medical decision making is increasing among Korean people, but it is not well known why some people prefer autonomy in decision making but others do not. The aim of this study was to determine the extent to which Korean adults wished to exercise autonomy in the process of decision making regarding end-of-life treatment and to determine whether economic issues and family functioning, in particular, were associated with preferences for participation in decision making in Korean people. This study was a cross-sectional correlational study using a survey. Data were collected using structured questionnaires from 354 patients or their families who visited ambulatory departments at two general hospitals in South Korea, recruited by the proportionate quota sampling method. Data analysis was performed using multinomial logistic regression analyses. The study was approved by the hospitals' directors and the ethics committee of Kyungpook National University Hospital. Written informed consent was given by all participants. A majority of Korean people wanted to make autonomous decisions regarding treatment at the end of life. Preferences for autonomous decision making regarding end-of-life treatment, rather than relying on family, showed a significant increase in association with poor family functioning and low income. Results of this study suggested the necessity for development of alternatives to a dominant traditional "family-centered" approach in Korean people, in order to enhance end-of-life decision making for people who wish to take an active role in the decision-making process. Healthcare providers need to examine not only patients' preferred decision-making style but also any reasons for their choice, in particular, family conflict and financial burden. © The Author(s) 2014.

  6. Family members' informal roles in end-of-life decision making in adult intensive care units.

    Quinn, Jill R; Schmitt, Madeline; Baggs, Judith Gedney; Norton, Sally A; Dombeck, Mary T; Sellers, Craig R

    2012-01-01

    To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Health care clinicians, patients, and family members. Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient's wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families' decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families' decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

  7. End-of-life decision-making for children with severe developmental disabilities: The parental perspective.

    Zaal-Schuller, I H; de Vos, M A; Ewals, F V P M; van Goudoever, J B; Willems, D L

    2016-01-01

    The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made. We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive. Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team. Copyright © 2015 Elsevier Ltd. All rights reserved.

  8. The end of life decisions -- should physicians aid their patients in dying?

    Sharma, B R

    2004-06-01

    Decisions pertaining to end of life whether legalized or otherwise, are made in many parts of the world but not reported on account of legal implications. The highly charged debate over voluntary euthanasia and physician assisted suicide was brought into the public arena again when two British doctors confessed to giving lethal doses of drugs to hasten the death of terminally ill patients. Lack of awareness regarding the distinction between different procedures on account of legal status granted to them in some countries is the other area of concern. Some equate withdrawal of life support measures to physician assisted suicide whereas physician assisted suicide is often misinterpreted as euthanasia. Debate among the medical practitioners, law makers and the public taking into consideration the cultural, social and religious ethos will lead to increased awareness, more safeguards and improvement of medical decisions concerning the end of life. International Human Rights Law can provide a consensual basis for such a debate on euthanasia.

  9. Family communication and decision making at the end of life: a literature review.

    Wallace, Cara L

    2015-06-01

    Patients and families coping with a terminal illness are faced with a number of decisions over the course of their disease. The role that family communication plays in the process of decision making is an important one. The objectives for this review are to examine the current state of empirical literature on the relationship between family communication and decision making about end-of-life care, to identify gaps, and to discuss implications for policy, practice, and future research. Articles were identified using systematic keyword searches within the following relevant databases: Academic Search Complete, CINAHL Plus, Communications and Mass Media Complete, ERIC, PsychINFO, MEDLINE, SocINDEX, and ProQuest. The three bodies of relevant literature that emerged during this review include: (1) the importance of family communication at the end of life (EoL); (2) family decision making at the EoL; and (3) the interrelationship of communication (both within the family and with healthcare professionals) and decision making at the EoL. While the literature highlights the role of communication between medical professionals and the patient or family members, there is very little focus on the process of how family communication among the family members themselves contributes to decision making at the end of life. Barriers to end-of-life care are important considerations for helping patients to access timely and appropriate services. Understanding the pertinent role of family communication as it relates to the decision for EoL care is the first step in working to provide another avenue for overcoming these barriers.

  10. Swiss doctors' attitudes towards end-of-life decisions and their determinants: a comparison of three language regions.

    Fischer, Susanne; Bosshard, Georg; Faisst, Karin; Tschopp, Alois; Fischer, Johannes; Bär, Walter; Gutzwiller, Felix

    2006-06-10

    To investigate attitudes to end-of-life decisions, and the influence of cultural factors and of doctors' personal characteristics on these attitudes. As part of a European research project (EURELD), a study on attitudes towards medical end-of-life decisions was conducted among doctors in the German-, French- and Italian-speaking areas of Switzerland. A written questionnaire was sent to a random sample of nine different types of specialist; it presented 14 statements on end-of-life decisions and doctors were asked whether they agreed or disagreed with them. The response rate was 64%. 1360 questionnaires were studied. The results show general agreement with statements on the alleviation of pain and other symptoms with possible life-shortening effect, as well as on non-treatment decisions. The language region was a strong determinant of agreement on some attitudes towards end-of-life decisions. Agreement on the use of lethal drugs and alleviation of pain and other symptoms with possible life-shortening effect was higher among French-speaking than among German- and Italian-speaking doctors. For nontreatment decisions, agreement was higher in the German-speaking region than in the French- and Italian-speaking regions of the country. Italian-speaking doctors were strongly opposed to any kind of end-of-life decision. Religious believers and those who attended a larger number of terminal patients tended to disagree more often with end-of-life decisions than the other doctors. In end-of-life decision-making, Switzerland represents "Europe in miniature". The impact on end-of-life decisions of cultural factors and the number of terminal patients attended needs further consideration.

  11. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

    Wagemans, A.M.; Schrojenstein Lantman-de Valk, H.M. van; Proot, I.M.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L.M.G.

    2013-01-01

    Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. Design: A qualitative study

  12. End-of-life decisions: an important theme in the care for people with intellectual disabilities.

    Wagemans, A.; Schrojenstein Lantman, H.M.J. van; Tuffrey-Wijne, I.; Widdershoven, G.; Curfs, L.M.G.

    2010-01-01

    BACKGROUND: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing

  13. Nurse involvement in end-of-life decision making: the ETHICUS Study

    Benbenishty, Julie; Ganz, Freda DeKeyser; Lippert, Anne

    2006-01-01

    The purpose was to investigate physicians' perceptions of the role of European intensive care nurses in end-of-life decision making.......The purpose was to investigate physicians' perceptions of the role of European intensive care nurses in end-of-life decision making....

  14. GPs and end of life decisions : views and experiences

    Abela, Jurgen

    2015-01-01

    The views and experiences of GPs with respect to end of life (EoL) care are seldom addressed. The aim of this article is to better understand this aspect of care. A cross-sectional survey of all doctors in the country was designed and set up. The overall response was 396 (39.7%), 160 of which were GPs. 28.7% of GPs received no formal training in palliative medicine. 89.8% of respondents declared that their religion was important in EoL care. 45.3% agreed with the right of a patient to decide ...

  15. Mental competence and surrogate decision-making towards the end of life.

    Strätling, M; Scharf, V E; Schmucker, P

    2004-01-01

    German legislation demands that decisions about the treatment of mentally incompetent patients require an 'informed consent'. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the person under his/her care. This includes 'end-of-life decisions'. Deviations from this procedure are only allowed in acute emergencies or cases of 'medical futility'. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical 'end of life-decisions' and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like the assessment of mental competence, the options for exercising patient self-determination via advance directives and durable powers of attorney, the improvement of palliative care facilities, the clarification of formal procedures for surrogate decision-making in health care and towards the end of life and the possibilities and their limitations of controlling these decision-making processes 'externally' (e.g., by Guardianship Courts or committees). The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction

  16. Reasons, considerations, difficulties and documentation of end-of-life decisions in European intensive care units: the ETHICUS Study

    Sprung, C.L.; Woodcock, T.; Sjokvist, P.

    2008-01-01

    Objective: To evaluate physicians' reasoning, considerations and possible difficulties in end-of-life decision-making for patients in European intensive care units (ICUs). Design: A prospective observational study. Setting: Thirty-seven ICUs in 17 European countries. Patients and participants...... for, considerations in, and difficulties with end-of-life decision-making was germane in each case as it arose. Overall, 2,134 (69%) of the decisions were documented in the medical record, with inter-regional differences in documentation practice. Primary reasons given by physicians for the decision......: A total of 3,086 patients for whom an end-of-life decision was taken between January 1999 and June 2000. The dataset excludes patients who died after attempts at cardiopulmonary resuscitation and brain-dead patients. Measurements and results: Physicians indicated which of a pre-determined set of reasons...

  17. Health Care Decisions at the End of Life: Theological and Ethical Foundations for Decision Making.

    Allegretti, Joseph G.

    This paper provides a framework for making sense of perplexing problems surrounding issues of death and dying by exploring the theological and ethical background to health care decision making at the end of life. The paper first examines several of the basic principles that theologians and secular ethicists employ when analyzing such questions.…

  18. [End-of-life-care and euthanasia: medical assistance in dying or help to die].

    Müller-Busch, H Christof

    2008-01-01

    The debate on euthanasia that has been started all over Europe, but especially in Germany has been particularly complicated by unclear and inconsistent definitions. Medical decisions in end-of-life care gain increasing importance not only for the time of death but also for the kind and quality of the dying process. Though legal regulations can help to diminish doubts about the permissibility of various measures in end-of-life care, teaching and knowledge of ethical principles, communication skills, respect, transparency and knowledge of palliative care options seem to be the most important factors in accompanying the dying professionally and with dignity and even in achieving a consented compromise when aid in hastening death is asked for.

  19. Euthanasia and other end-of-life decisions: a mortality follow-back study in Belgium

    Bossuyt Nathalie

    2009-03-01

    Full Text Available Abstract Background This study compares prevalence and types of medical end-of-life decisions between the Dutch-speaking and French-speaking communities of Belgium. This is the first nationwide study that can make these comparisons and the first measurement after implementation of the euthanasia law (2002. Methods We performed a mortality follow-back study in 2005–2006. Data were collected via the nationwide Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all Belgian GPs. Weekly, all GPs reported the medical end-of-life decisions among all non-sudden deaths of patients in their practice. We compared the northern Dutch-speaking (60% and southern French-speaking communities (40% controlling for population differences. Results We analysed 1690 non-sudden deaths. An end-of-life decision with possible life-shortening effect was made in 50% of patients in the Dutch-speaking community and 41% of patients in the French-speaking community (OR 1.4; 95%CI, 1.2 to 1.8. Continuous deep sedation until death occurred in 8% and 15% respectively (OR 0.5; 95%CI, 0.4 to 0.7. Community differences regarding the prevalence of euthanasia or physician-assisted suicide were not significant. Community differences were more present among home/care home than among hospital deaths: non-treatment decisions with explicit life-shortening intention were made more often in the Dutch-speaking than in the French-speaking community settings (OR 2.2; 95%CI, 1.2 to 3.9; while continuous deep sedation occurred less often in the Dutch-speaking community settings (OR 0.5; 95%CI, 0.3 to 0.9. Conclusion Even though legal and general healthcare systems are the same for the whole country, there are considerable variations between the communities in type and prevalence of certain end-of-life decisions, even after controlling for population differences.

  20. End-of-life decision-making and terminal sedation among very old patients.

    De Gendt, Cindy; Bilsen, Johan; Mortier, Freddy; Vander Stichele, Robert; Deliens, Luc

    2009-01-01

    About half of the persons who die in developed countries are very old (aged 80 years or older) and this proportion is still rising. In general, there is little information available concerning the circumstances and quality of the end of life of this group. This study aims (1) to describe the incidence and characteristics of medical end-of-life decisions with a possible or certain life-shortening effect (ELDs) and terminal sedation among very old patients who died nonsuddenly, (2) to describe the characteristics of the preceding decision-making process, and (3) to compare this with the deaths of younger patients. A sample of 5,005 death certificates was selected from all deaths in Flanders (Belgium) in the second half of 2001 (before euthanasia was legalized). Questionnaires were mailed to the certifying physicians. Response rate was 58.9%. An ELD was made for 53.6% very old (aged 80+) patients who died nonsuddenly (vs. 63.3% for the younger patients). Use of life-ending drugs occurred among 1.1% (six times less frequently than in younger patients), with no euthanasia cases, pain and symptom alleviation with a possible life-shortening effect among 27.3% (two times less frequently), and withholding or withdrawing life-prolonging treatments among 25.2% (slightly more frequently). Terminal sedation occurred among 6.9% of the cases, two times less frequently than for the younger patients. ELDs were not often discussed with very old patients. Among competent patients this was less than compared with younger patients. ELDs are less common for very old than for younger patients. Physicians seem to have a more reluctant attitude towards the use of lethal drugs, terminal sedation and participation in decision-making when dealing with very old patients. Advance care planning should increase the involvement of very old competent and noncompetent patients in end-of-life decision-making. (c) 2008 S. Karger AG, Basel.

  1. Roman concept of mental capacity to make end-of-life decisions.

    Mendelson, Danuta

    2007-01-01

    When assessing decisional competence of patients, psychiatrists have to balance the patients' right to personal autonomy, their condition and wishes against principles of medical ethics and professional discretion. This article explores the age-old legal and ethical dilemmas posed by refusal of vital medical treatment by patients and their mental capacity to make end-of-life decisions against the background of philosophical, legal and medical approaches to these issues in the time of the Younger Pliny (c62-c113 CE). Classical Roman discourse regarding mental competency and "voluntary death" formed an important theme of the vast corpus of Greco-Roman writings, which was moulded not only by legal permissibility of suicide but also by philosophical (in modern terms, moral or ethical) considerations. Indeed, the legal and ethical issues of evaluating the acceptability of end of life decisions discussed in the Letters are as pertinent today as they were 2000 years ago. We may gain valuable insights about our own methodologies and frames of reference in this area of the law and psychiatry by examining Classical Roman approaches to evaluating acceptability of death-choices as described in Pliny's Letters and the writings of some of his peers.

  2. Avaliação das decisões médicas durante o processo do morrer Evaluation of medical decisions at the end-of-life process

    Rachel Duarte Moritz

    2009-06-01

    Full Text Available OBJETIVOS: Avaliar as condutas médicas adotadas durante o morrer de pacientes que foram a óbito no HU/UFSC. Comparar essas condutas e o perfil epidemiológico dos que morreram na unidade de terapia intensiva (UTI com o dos que morreram nas enfermarias de clínica médica (ECM ou cirúrgicas (ECC. MÉTODOS: Estudo retrospectivo e observacional, onde foram anotados os dados demográficos, clínicos e terapêuticos dos pacientes adultos que morreram nas enfermarias e na unidade de terapia intensiva do HU/UFSC, no período de julho/2004 a dezembro/2008. Para análise estatística foram utilizados os testes: t Student, χ2 e ANOVA (significante pOBJECTIVES: To evaluate the medical decisions at end-of-life of patients admitted at HU/UFSC and to compare these decisions and the profile of patients who died in the intensive care unit (ICU to those who died in medical (MW and surgical wards (SW. METHODS: This is a retrospective and observational study. Demographic data, clinical features, treatment and the end-of-life care decisions of adult patients who died in wards and the intensive care unit of HU/UFSC from July/2004 to December/2008 were analyzed . For statistical analysis the Student's t, χ2 and ANOVA tests were used: (significance p <0.05. RESULTS: An analysis was made of 1124 deaths: 404 occurred in ICU, 607 in MW and 113 in SW. The overall hospital mortality rate was 5.9% (ICU=24.49%, MW=7.2%, SW=1.69%. Mean ages of patients were: ICU=56.7, MW=69.3 and SW=70.4 years (p <0.01. Withholding/withdrawing life support was performed prior to 30.7% of deaths in the intensive care unit and 10% in the wards (p <0.01. Cardiopulmonary resuscitation was not carried out in 65% of cases in ICU, 79% in MW and 62% in SW. Besides cardiopulmonary resuscitation, the more frequent withholding/withdrawing life support in the intensive care unit were vasoactive drugs and in the wards refusal of admission to intensive care unit . Do-not-resuscitate order was

  3. Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions

    Xafis, Vicki; Gillam, Lynn; Hynson, Jenny; Sullivan, Jane; Cossich, Mary; Wilkinson, Dominic

    2015-01-01

    Background: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. TheCaring Decisionshandbook and website were developed to fill these gaps. Aim: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. Design: A targeted...

  4. Ethical decisions in end- of-life care

    Repro

    much the patient wants to know. In the context of ... MALEFICENCE. Beneficence (to benefit the patient) ... medical practitioners we are very aware of the ... International. Diploma in ... IAHPC (International ..... power of doctors and nurses, fear .... themselves should not be “Is this the lowest markets are going to go?”, but “Are.

  5. Buddhist ethics and end-of-life care decisions.

    McCormick, Andrew J

    2013-01-01

    Buddhism has grown in the United States in the past 50 years. Immigrants come following long traditions. American converts are more eclectic. The first Buddhist precept prohibiting harm to living things, the virtue of compassion, and the goal of a peaceful death provide guidance for ethical decision making regarding organ donation, withholding and withdrawing life-sustaining treatment, voluntary cessation of eating, physician aid in dying, and euthanasia. Concepts and views from three Buddhist traditions and views of master practitioners are presented. Case examples illustrate some of the differences within Buddhism. Suggestions for social workers are provided.

  6. Ethics of End of Life Decisions in Pediatrics: A Narrative Review of the Roles of Caregivers, Shared Decision-Making, and Patient Centered Values

    Jonathan D. Santoro

    2018-04-01

    Full Text Available Background: This manuscript reviews unique aspects of end of life decision-making in pediatrics. Methods: A narrative literature review of pediatric end of life issues was performed in the English language. Results: While a paternalistic approach is typically applied to children with life-limiting medical prognoses, the cognitive, language, and physical variability in this patient population is wide and worthy of review. In end of life discussions in pediatrics, the consideration of a child’s input is often not reviewed in depth, although a shared decision-making model is ideal for use, even for children with presumed limitations due to age. This narrative review of end of life decision-making in pediatric care explores nomenclature, the introduction of the concept of death, relevant historical studies, limitations to the shared decision-making model, the current state of end of life autonomy in pediatrics, and future directions and needs. Although progress is being made toward a more uniform and standardized approach to care, few non-institutional protocols exist. Complicating factors in the lack of guidelines include the unique facets of pediatric end of life care, including physical age, paternalism, the cognitive and language capacity of patients, subconscious influencers of parents, and normative values of death in pediatrics. Conclusions: Although there have been strides in end of life decision-making in pediatrics, further investigation and research is needed in this field.

  7. Ethics of End of Life Decisions in Pediatrics: A Narrative Review of the Roles of Caregivers, Shared Decision-Making, and Patient Centered Values.

    Santoro, Jonathan D; Bennett, Mariko

    2018-04-26

    Background: This manuscript reviews unique aspects of end of life decision-making in pediatrics. Methods: A narrative literature review of pediatric end of life issues was performed in the English language. Results: While a paternalistic approach is typically applied to children with life-limiting medical prognoses, the cognitive, language, and physical variability in this patient population is wide and worthy of review. In end of life discussions in pediatrics, the consideration of a child’s input is often not reviewed in depth, although a shared decision-making model is ideal for use, even for children with presumed limitations due to age. This narrative review of end of life decision-making in pediatric care explores nomenclature, the introduction of the concept of death, relevant historical studies, limitations to the shared decision-making model, the current state of end of life autonomy in pediatrics, and future directions and needs. Although progress is being made toward a more uniform and standardized approach to care, few non-institutional protocols exist. Complicating factors in the lack of guidelines include the unique facets of pediatric end of life care, including physical age, paternalism, the cognitive and language capacity of patients, subconscious influencers of parents, and normative values of death in pediatrics. Conclusions: Although there have been strides in end of life decision-making in pediatrics, further investigation and research is needed in this field.

  8. Communication and Decision-Making About End-of-Life Care in the Intensive Care Unit.

    Brooks, Laura Anne; Manias, Elizabeth; Nicholson, Patricia

    2017-07-01

    Clinicians in the intensive care unit commonly face decisions involving withholding or withdrawing life-sustaining therapy, which present many clinical and ethical challenges. Communication and shared decision-making are key aspects relating to the transition from active treatment to end-of-life care. To explore the experiences and perspectives of nurses and physicians when initiating end-of-life care in the intensive care unit. The study was conducted in a 24-bed intensive care unit in Melbourne, Australia. An interpretative, qualitative inquiry was used, with focus groups as the data collection method. Intensive care nurses and physicians were recruited to participate in a discipline-specific focus group. Focus group discussions were audio-recorded, transcribed, and subjected to thematic data analysis. Five focus groups were conducted; 17 nurses and 11 physicians participated. The key aspects discussed included communication and shared decision-making. Themes related to communication included the timing of end-of-life care discussions and conducting difficult conversations. Implementation and multidisciplinary acceptance of end-of-life care plans and collaborative decisions involving patients and families were themes related to shared decision-making. Effective communication and decision-making practices regarding initiating end-of-life care in the intensive care unit are important. Multidisciplinary implementation and acceptance of end-of-life care plans in the intensive care unit need improvement. Clear organizational processes that support the introduction of nurse and physician end-of-life care leaders are essential to optimize outcomes for patients, family members, and clinicians. ©2017 American Association of Critical-Care Nurses.

  9. Experiences and attitudes towards end-of-life decisions amongst Danish physicians

    Folker, Anna Paldam; Holtug, Nils; Jensen, Annette B

    1996-01-01

    In this survey we have investigated the experiences and attitudes of Danish physicians regarding end-of-life decisions. Most respondents have made decisions that involve hastening the death of a patient, and almost all find it acceptable to do so. Such decisions are made more often, and considered...

  10. End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.

    Schüklenk, Udo; van Delden, Johannes J M; Downie, Jocelyn; McLean, Sheila A M; Upshur, Ross; Weinstock, Daniel

    2011-11-01

    This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. © 2011 Blackwell Publishing Ltd.

  11. What parents want from doctors in end-of-life decision-making for children.

    Sullivan, J; Monagle, P; Gillam, L

    2014-03-01

    End-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents' views and experiences of end-of-life decision-making. A qualitative method with a semistructured interview design was used. Parent participants were living in the community. Twenty-five bereaved parents. Parents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child's doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor's role were to provide follow-up support and referral. Understanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.

  12. Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes.

    Manheim, Chelsea E; Haverhals, Leah M; Jones, Jacqueline; Levy, Cari R

    2016-01-01

    The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans' family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans' families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans' needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans' end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran's death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.

  13. End-of-life decision-making for children with severe developmental disabilities: The parental perspective

    Zaal-Schuller, I. H.; de Vos, M. A.; Ewals, F. V. P. M.; van Goudoever, J. B.; Willems, D. L.

    2016-01-01

    The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. We searched MEDLINE, EMBASE, CINAHL and

  14. The impact of regional culture on intensive care end of life decision making: an Israeli perspective from the ETHICUS study.

    Ganz, F D; Benbenishty, J; Hersch, M; Fischer, A; Gurman, G; Sprung, C L

    2006-04-01

    Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units (ICUs), including those in Israel. Several results of the Israeli subsample were different to those of the overall sample. The objective of this article was to explore these differences and provide a possible explanation based on the impact of culture on end of life decision making. All adult patients admitted consecutively to three Israeli ICUs (n = 2778) who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively (n = 363). These patients were compared with a similar sample taken from the larger study (ethics in European intensive care units: ETHICUS) carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation (CPR), brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process (SDP). The data also included patient characteristics (gender, age, ICU admission diagnosis, chronic disorders, date of hospital admission, date and time of decision to limit therapy, date of hospital discharge, date and time of death in hospital), specific therapies limited, and the method of SDP. The majority of patients (n = 252, 69%) had treatment withheld, none underwent SDP, 62 received CPR (17%), 31 had brain death (9%), and 18 underwent withdrawal of treatment (5%). The primary reason given for limiting treatment was that the patient was unresponsive to therapy (n = 187). End of life discussions were held with 132 families (36%), the vast majority of which revolved around withholding treatment (91

  15. End of life care and decision making: Opinions and experiences of the general public, bereaved relatives, and professionals

    N.J.H. Raijmakers (Natasja)

    2013-01-01

    textabstractEnd-of-life care aims to improve quality of life of patients and their relatives facing problems associated with life-threatening illness in the last days of life. End-of-life decision-making is an important aspect of end-of-life care that can have a significant impact on the process of

  16. Haemodialysis patients and end-of-life decisions: a theory of personal preservation.

    Calvin, Amy Olivier

    2004-06-01

    Lack of knowledge about the end-of-life treatment preferences of patients undergoing haemodialysis is problematic in the acute care setting as, often, patients are unable to communicate their treatment wishes effectively and have not previously documented their desires in the form of advance directives. Existing theoretical models offer an incomplete explanation of end-of-life treatment decisions in haemodialysis patients. This paper reports a study exploring decisions about end-of-life treatment (e.g. cardiopulmonary resuscitation, mechanical ventilation) in people with kidney failure undergoing haemodialysis. Grounded theory was used. Theoretical sampling led to selection of 20 haemodialysis patients (11 men and nine women with a mean age of 56) who attended three dialysis outpatient centres in central Texas. They were interviewed about end-of-life treatment plans and the use of advance directives (i.e. living wills and durable powers of attorney for health care). Interviews, transcripts and field notes from the first 12 patients were analysed by making constant comparisons. The remaining eight interviews were used for validation purposes. Data collection and analysis spanned the years 1997-2000. When prompted to think about and discuss end-of-life treatments, haemodialysis patients chose to focus on living rather than dying. A substantive theory of 'personal preservation' was developed. This consists of three phases: knowing the odds for survival, defining individuality (beating the odds, discovering meaning, being optimistic and having faith in a higher force) and personal preservation (being responsible and taking chances). The theory of personal preservation furthers understanding of illness behaviour and the process by which patients make decisions about end-of-life treatments. It can be used to sensitize health care professionals to patients' desires and to enhance patient-professional communication.

  17. End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives.

    Wagemans, Annemieke M A; Van Schrojenstein Lantman-de Valk, Henny M J; Proot, Ireen M; Metsemakers, Job; Tuffrey-Wijne, Irene; Curfs, Leopold M G

    2013-09-01

    Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.

  18. Perceived risks around choice and decision making at end-of-life: a literature review.

    Wilson, F; Gott, M; Ingleton, C

    2013-01-01

    the World Health Organization identifies meeting patient choice for care as central to effective palliative care delivery. Little is known about how choice, which implies an objective balancing of options and risks, is understood and enacted through decision making at end-of-life. to explore how perceptions of 'risk' may inform decision-making processes at end-of-life. an integrative literature review was conducted between January and February 2010. Papers were reviewed using Hawker et al.'s criteria and evaluated according to clarity of methods, analysis and evidence of ethical consideration. All literature was retained as background data, but given the significant international heterogeneity the final analysis specifically focused on the UK context. the databases Medline, PsycINFO, Assia, British Nursing Index, High Wire Press and CINAHL were explored using the search terms decision*, risk, anxiety, hospice and palliative care, end-of-life care and publication date of 1998-2010. thematic analysis of 25 papers suggests that decision making at end-of-life is multifactorial, involving a balancing of risks related to caregiver support; service provider resources; health inequalities and access; challenges to information giving; and perceptions of self-identity. Overall there is a dissonance in understandings of choice and decision making between service providers and service users. the concept of risk acknowledges the factors that shape and constrain end-of-life choices. Recognition of perceived risks as a central factor in decision making would be of value in acknowledging and supporting meaningful decision making processes for patients with palliative care needs and their families.

  19. Trends in End-of-Life Decision Making in Patients With and Without Cancer

    Pardon, K.; Chambaere, K.; Pasman, H.R.W.; Deschepper, R.; Rietjens, J.; Deliens, L.

    2013-01-01

    Purpose: Because of cancer's high symptom burden and specific disease course, patients with cancer are more likely than other patients to face end-of-life decisions that have possible or certain life-shortening effects (ELDs). This study examines the incidence of ELDs in patients with cancer

  20. Medical end-of-life practices among Canadian physicians: a pilot study.

    Marcoux, Isabelle; Boivin, Antoine; Mesana, Laura; Graham, Ian D; Hébert, Paul

    2016-01-01

    Medical end-of-life practices are hotly debated in Canada, and data from other countries are used to support arguments. The objective of this pilot study was twofold: to adapt and validate a questionnaire designed to measure the prevalence of these practices in Canada and the underlying decision-making process, and to assess the feasibility of a nationally representative study. In phase 1, questionnaires from previous studies were adapted to the Canadian context through consultations with a multidisciplinary committee and based on a scoping review. The modified questionnaire was validated through cognitive interviews with 14 physicians from medical specialties associated with a higher probability of being involved with dying patients recruited by means of snowball sampling. In phase 2, we selected a stratified random sample of 300 Canadian physicians in active practice from a national medical directory and used the modified tailored method design for mail and Web surveys. There were 4 criteria for success: modified questions are clearly understood; response patterns for sensitive questions are similar to those for other questions; respondents are comparable to the overall sampling frame; and mean questionnaire completion time is less than 20 minutes. Phase 1: main modifications to the questionnaire were related to documentation of all other medical practices (including practices intended to prolong life) and a question on the proportionality of drugs used. The final questionnaire contained 45 questions in a booklet style. Phase 2: of the 280 physicians with valid addresses, 87 (31.1%) returned the questionnaire; 11 of the 87 declined to participate, for a response rate of 27.1% (n = 76). Most respondents (64 [84%]) completed the mail questionnaire. All the criteria for success were met. It is feasible to study medical end-of-life practices, even for practices that are currently illegal, including the intentional use of lethal drugs. Results from this pilot study

  1. Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography.

    Kim, Kyounghae; Heinze, Katherine; Xu, Jiayun; Kurtz, Melissa; Park, Hyunjeong; Foradori, Megan; Nolan, Marie T

    2017-08-01

    The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.

  2. The rational choice model in family decision making at the end of life.

    Karasz, Alison; Sacajiu, Galit; Kogan, Misha; Watkins, Liza

    2010-01-01

    Most end-of-life decisions are made by family members. Current ethical guidelines for family decision making are based on a hierarchical model that emphasizes the patient's wishes over his or her best interests. Evidence suggests that the model poorly reflects the strategies and priorities of many families. Researchers observed and recorded 26 decision-making meetings between hospital staff and family members. Semi-structured follow-up interviews were conducted. Transcriptions were analyzed using qualitative techniques. For both staff and families, consideration of a patient's best interests generally took priority over the patient's wishes. Staff generally introduced discussion of the patient's wishes for rhetorical purposes, such as persuasion. Competing moral frameworks, which de-emphasized the salience of patients' autonomy and "right to choose," played a role in family decision making. The priority given to the patients' wishes in the hierarchical model does not reflect the priorities of staff and families in making decisions about end-of-life care.

  3. Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions.

    Xafis, Vicki; Gillam, Lynn; Hynson, Jenny; Sullivan, Jane; Cossich, Mary; Wilkinson, Dominic

    2015-11-01

    Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.

  4. Evaluating a Clinical Decision Support Interface for End-of-Life Nurse Care.

    Febretti, Alessandro; Stifter, Janet; Keenan, Gail M; Lopez, Karen D; Johnson, Andrew; Wilkie, Diana J

    2014-01-01

    Clinical Decision Support Systems (CDSS) are tools that assist healthcare personnel in the decision-making process for patient care. Although CDSSs have been successfully deployed in the clinical setting to assist physicians, few CDSS have been targeted at professional nurses, the largest group of health providers. We present our experience in designing and testing a CDSS interface embedded within a nurse care planning and documentation tool. We developed four prototypes based on different CDSS feature designs, and tested them in simulated end-of-life patient handoff sessions with a group of 40 nurse clinicians. We show how our prototypes directed nurses towards an optimal care decision that was rarely performed in unassisted practice. We also discuss the effect of CDSS layout and interface navigation in a nurse's acceptance of suggested actions. These findings provide insights into effective nursing CDSS design that are generalizable to care scenarios different than end-of-life.

  5. Family Communication about End-of-Life Decisions and the Enactment of the Decision-Maker Role

    April R. Trees

    2017-06-01

    Full Text Available End-of-life (EOL decisions in families are complex and emotional sites of family interaction necessitating family members coordinate roles in the EOL decision-making process. How family members in the United States enact the decision-maker role in EOL decision situations was examined through in-depth interviews with 22 individuals who participated in EOL decision-making for a family member. A number of themes emerged from the data with regard to the enactment of the decision-maker role. Families varied in how decision makers enacted the role in relation to collective family input, with consulting, informing and collaborating as different patterns of behavior. Formal family roles along with gender- and age-based roles shaped who took on the decision-maker role. Additionally, both family members and medical professionals facilitated or undermined the decision-maker’s role enactment. Understanding the structure and enactment of the decision-maker role in family interaction provides insight into how individuals and/or family members perform the decision-making role within a cultural context that values autonomy and self-determination in combination with collective family action in EOL decision-making.

  6. Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians.

    Jox, Ralf J; Schaider, Andreas; Marckmann, Georg; Borasio, Gian Domenico

    2012-09-01

    Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital in Germany. The transcripts were subjected to qualitative content analysis. Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment.

  7. Negotiating end-of-life decision making: a comparison of Japanese and U.S. residents' approaches.

    Gabbay, Baback B; Matsumura, Shinji; Etzioni, Shiri; Asch, Steven M; Rosenfeld, Kenneth E; Shiojiri, Toshiaki; Balingit, Peter P; Lorenz, Karl A

    2005-07-01

    To compare Japanese and U.S. resident physicians' attitudes, clinical experiences, and emotional responses regarding making disclosures to patients facing incurable illnesses. From September 2003 to June 2004, the authors used a ten-item self-administered anonymous questionnaire in a cross-sectional survey of 103 internal medicine residents at two U.S. sites in Los Angeles, California, and 244 general medical practice residents at five Japanese sites in Central Honshu, Kyushu, Okinawa, Japan. The Japanese residents were more likely to favor including the family in disclosing diagnosis (95% versus 45%, pguilt about these behaviors. The residents' approaches to end-of-life decision making reflect known cultural preferences related to the role of patients and their families. Although Japanese trainees were more likely to endorse the role of the family, they expressed greater uncertainty about their approach. Difficulty and uncertainty in end-of-life decision making were common among both the Japanese and U.S. residents. Both groups would benefit from ethical training to negotiate diverse, changing norms regarding end-of-life decision making.

  8. Attitudes of Dutch nurses towards their involvement in end-of-life decisions with a possible life-shortening effect.

    Albers, G.; Francke, A.L.; Veer, A.J. de; Onwuteaka-Philipsen, B.D.

    2012-01-01

    Background: Nurses are often involved in end-of-life decision making as they play an important role in caring for terminally ill patients. Aim: To investigate nurses’ attitudes towards their involvement in end-of-life decisions with a possible lifeshortening effect, and a possible relationship with

  9. [State policy at the end of life. The transformation of medical deontology].

    Serrano Ruiz-Calderón, José Miguel

    2012-01-01

    The contemporary state invades privacy in ways that affect even the end of life process. It develops public policies that can affect medical ethics. This limitation of power leaves the doctor's attention to the profession and may become a convenient code.

  10. Symptoms and medication management in the end of life phase of high-grade glioma patients

    Koekkoek, J.A.F.; Dirven, L.; Sizoo, E.M.; Pasman, H.R.W.; Heimans, J.J.; Postma, T.J.; Deliens, L.; Grant, R.; McNamara, S.; Stockhammer, G.; Medicus, E.; Taphoorn, M.J.B.; Reijneveld, J.C.

    2014-01-01

    During the end of life (EOL) phase of high-grade glioma (HGG) patients, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible. In this study, we evaluated the prevalence of symptoms and medication management in HGG patients during the EOL phase. We

  11. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making.

    Braun, Ursula K; Beyth, Rebecca J; Ford, Marvella E; McCullough, Laurence B

    2008-03-01

    End-of-life decisions are frequently made by patients' surrogates. Race and ethnicity may affect such decision making. Few studies have described how different racial/ethnic groups experience end-of-life surrogate decision making. To describe the self-reported experience the self-reported experience of African-American, Caucasian, and Hispanic surrogate decision makers of seriously ill patients and to examine the relationship of race, ethnicity, and culture to that experience. Purposive sample to include racial/ethnic minorities in a qualitative study using focus group interviews. The participants of the study were 44 experienced, mostly female, surrogate decision makers for older veterans. Transcripts were qualitatively analyzed to identify major themes, with particular attention to themes that might be unique to each of the three groups. The experience of burden of end-of-life decision making was similar in all three groups. This burden in its medical, personal, and familial dimensions is compounded by uncertainty about prognosis and the patient's preferences. Racial/ethnic variations of responses to this burden concerned the physician-family relationship, religion and faith, and past experiences with race/ethnicity concordant versus non-concordant physicians. Regardless of race/ethnicity, surrogates for seriously ill patients appeared to experience increased significant, multidimensional burdens of decision making under conditions of uncertainty about a patient's preferences. This aspect of the burden of surrogate decision making may not be fully appreciated by physicians. Physicians should identify and be especially attentive to strategies used by surrogates, which may vary by race/ethnicity, to reduce the uncertainty about a patient's preferences and thus the burden of surrogate decision making to assist them in this difficult process.

  12. Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey

    Chambaere, K.; Rietjens, J.A.C.; Smets, T.; Bilsen, J.; Deschepper, R.; Pasman, H.R.W.; Deliens, L.

    2012-01-01

    Background: A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of

  13. Seeking and Accepting: U.S. Clergy Theological and Moral Perspectives Informing Decision Making at the End of Life.

    Sanders, Justin J; Chow, Vinca; Enzinger, Andrea C; Lam, Tai-Chung; Smith, Patrick T; Quiñones, Rebecca; Baccari, Andrew; Philbrick, Sarah; White-Hammond, Gloria; Peteet, John; Balboni, Tracy A; Balboni, Michael J

    2017-10-01

    People with serious illness frequently rely on religion/spirituality to cope with their diagnosis, with potentially positive and negative consequences. Clergy are uniquely positioned to help patients consider medical decisions at or near the end of life within a religious/spiritual framework. We aimed to examine clergy knowledge of end-of-life (EOL) care and beliefs about the role of faith in EOL decision making for patients with serious illness. Key informant interviews, focus groups, and survey. A purposive sample of 35 active clergy in five U.S. states as part of the National Clergy End-of-Life Project. We assessed participant knowledge of and desire for further education about EOL care. We transcribed interviews and focus groups for the purpose of qualitative analysis. Clergy had poor knowledge of EOL care; 75% desired more EOL training. Qualitative analysis revealed a theological framework for decision making in serious illness that balances seeking life and accepting death. Clergy viewed comfort-focused treatments as consistent with their faith traditions' views of a good death. They employed a moral framework to determine the appropriateness of EOL decisions, which weighs the impact of multiple factors and upholds the importance of God-given free will. They viewed EOL care choices to be the primary prerogative of patients and families. Clergy described ambivalence about and a passive approach to counseling congregants about decision making despite having defined beliefs regarding EOL care. Poor knowledge of EOL care may lead clergy to passively enable congregants with serious illness to pursue potentially nonbeneficial treatments that are associated with increased suffering.

  14. Policies to improve end-of-life decisions in Flemish hospitals: communication, training of health care providers and use of quality assessments

    Noortgate Nele

    2009-12-01

    Full Text Available Abstract Background The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-life. Implementation of policies through quality assessments, communication and the training and education of health care providers is equally important in improving actual end-of-life practice. The aim of the present study is to report on the existence and nature of end-of-life policy implementation activities in Flemish acute hospitals. Methods A cross-sectional mail survey was sent to all acute hospitals (67 main campuses in Flanders (Belgium. The questionnaire asked about hospital characteristics, the prevalence of policies on five types of end-of-life decisions: euthanasia, palliative sedation, alleviation of symptoms with possible life-shortening effect, do-not-resuscitate decision, and withdrawing or withholding of treatment, the internal and external communication of these policies, training and education on aspects of end-of-life care, and quality assessments of end-of-life care on patient and family level. Results The response rate was 55%. Results show that in 2007 written policies on most types of end-of-life decisions were widespread in acute hospitals (euthanasia: 97%, do-not-resuscitate decisions: 98%, palliative sedation: 79%. While standard communication of these policies to health care providers was between 71% and 91%, it was much lower to patients and/or family (between 17% and 50%. More than 60% of institutions trained and educated their caregivers in different aspects on end-of-life care. Assessment of the quality of these different aspects at patient and family level occurred in 25% to 61% of these hospitals. Conclusions Most Flemish acute hospitals have developed a policy on end-of-life practices

  15. Policies to improve end-of-life decisions in Flemish hospitals: communication, training of health care providers and use of quality assessments.

    D'Haene, Ina; Vander Stichele, Robert H; Pasman, H Roeline W; Noortgate, Nele Van den; Bilsen, Johan; Mortier, Freddy; Deliens, Luc

    2009-12-30

    The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-life. Implementation of policies through quality assessments, communication and the training and education of health care providers is equally important in improving actual end-of-life practice. The aim of the present study is to report on the existence and nature of end-of-life policy implementation activities in Flemish acute hospitals. A cross-sectional mail survey was sent to all acute hospitals (67 main campuses) in Flanders (Belgium). The questionnaire asked about hospital characteristics, the prevalence of policies on five types of end-of-life decisions: euthanasia, palliative sedation, alleviation of symptoms with possible life-shortening effect, do-not-resuscitate decision, and withdrawing or withholding of treatment, the internal and external communication of these policies, training and education on aspects of end-of-life care, and quality assessments of end-of-life care on patient and family level. The response rate was 55%. Results show that in 2007 written policies on most types of end-of-life decisions were widespread in acute hospitals (euthanasia: 97%, do-not-resuscitate decisions: 98%, palliative sedation: 79%). While standard communication of these policies to health care providers was between 71% and 91%, it was much lower to patients and/or family (between 17% and 50%). More than 60% of institutions trained and educated their caregivers in different aspects on end-of-life care. Assessment of the quality of these different aspects at patient and family level occurred in 25% to 61% of these hospitals. Most Flemish acute hospitals have developed a policy on end-of-life practices. However, communication, training and the education of health care

  16. Advance Directive in End of Life Decision-Making among the Yoruba of South-Western Nigeria.

    Jegede, Ayodele Samuel; Adegoke, Olufunke Olufunsho

    2016-11-01

    End-of-life decision making is value-laden within the context of culture and bioethics. Also, ethics committee role is difficult to understand on this, thus need for ethnomethodological perspective in an expanding bioethical age. Anthropological approach was utilized to document Yoruba definition and perspective of death, cultural beliefs about end-of-life decision making, factors influencing it and ethics committee role. Interviews were conducted among selected Yoruba resident in Akinyele LGA, Oyo State, Nigeria. Content analytical approach was used for data analysis. Yoruba culture, death is socially constructed having spiritual, physical and social significance. Relationship between the dying and significant others influences decision making. Hierarchy of authority informs implementing traditional advance directive. Socialization, gender, patriarchy, religious belief and tradition are major considerations in end-of-life decision making. Awareness, resource allocation and advocacy are important ethics committees' roles. Further research into cultural diversity of end-of-life decision making will strengthen ethical practice in health care delivery.

  17. Discussing End-of-Life Decisions in a Clinical Ethics Committee: An Interview Study of Norwegian Doctors' Experience.

    Bahus, Marianne K; Førde, Reidun

    2016-09-01

    With disagreement, doubts, or ambiguous grounds in end-of-life decisions, doctors are advised to involve a clinical ethics committee (CEC). However, little has been published on doctors' experiences with discussing an end-of-life decision in a CEC. As part of the quality assurance of this work, we wanted to find out if clinicians have benefited from discussing end-of-life decisions in CECs and why. We will disseminate some Norwegian doctors' experiences when discussing end-of-life decisions in CECs, based on semi-structured interviews with fifteen Norwegian physicians who had brought an end-of-life decision case to a CEC. Almost half of the cases involved conflicts with the patients' relatives. In a majority of the cases, there was uncertainty about what would be the ethically preferable solution. Reasons for referring the case to the CEC were to get broader illumination of the case, to get perspective from people outside the team, to get advice, or to get moral backing on a decision already made. A great majority of the clinicians reported an overall positive experience with the CECs' discussions. In cases where there was conflict, the clinicians reported less satisfaction with the CECs' discussions. The study shows that most doctors who have used a CEC in an end-of-life decision find it useful to have ethical and/or legal aspects illuminated, and to have the dilemma scrutinized from a new perspective. A systematic discussion seems to be significant to the clinicians.

  18. End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes.

    Martins Pereira, Sandra; Fradique, Emília; Hernández-Marrero, Pablo

    2018-05-01

    End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. Qualitative secondary analysis. Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

  19. Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis.

    Lorella Lotto

    Full Text Available BACKGROUND: People have fought for their civil rights, primarily the right to live in dignity. At present, the development of technology in medicine and healthcare led to an apparent paradox: many people are fighting for the right to die. This study was aimed at testing whether different moral principles are associated with different attitudes towards end-of-life decisions for patients with a severe brain damage. METHODOLOGY: We focused on the ethical decisions about withdrawing life-sustaining treatments in patients with severe brain damage. 202 undergraduate students at the University of Padova were given one description drawn from four profiles describing different pathological states: the permanent vegetative state, the minimally conscious state, the locked-in syndrome, and the terminal illness. Participants were asked to evaluate how dead or how alive the patient was, and how appropriate it was to satisfy the patient's desire. PRINCIPAL FINDINGS: We found that the moral principles in which people believe affect not only people's judgments concerning the appropriateness of the withdrawal of life support, but also the perception of the death status of patients with severe brain injury. In particular, we found that the supporters of the Free Choice (FC principle perceived the death status of the patients with different pathologies differently: the more people believe in the FC, the more they perceived patients as dead in pathologies where conscious awareness is severely impaired. By contrast, participants who agree with the Sanctity of Life (SL principle did not show differences across pathologies. CONCLUSIONS: These results may shed light on the complex aspects of moral consensus for supporting or rejecting end-of-life decisions.

  20. The role of advance directives in end-of-life decisions in Austria: survey of intensive care physicians.

    Schaden, Eva; Herczeg, Petra; Hacker, Stefan; Schopper, Andrea; Krenn, Claus G

    2010-10-21

    Currently, intensive care medicine strives to define a generally accepted way of dealing with end-of-life decisions, therapy limitation and therapy discontinuation.In 2006 a new advance directive legislation was enacted in Austria. Patients may now document their personal views regarding extension of treatment. The aim of this survey was to explore Austrian intensive care physicians' experiences with and their acceptance of the new advance directive legislation two years after enactment (2008). Under the aegis of the OEGARI (Austrian Society of Anaesthesiology, Resuscitation and Intensive Care) an anonymised questionnaire was sent to the medical directors of all intensive care units in Austria. The questions focused on the physicians' experiences regarding advance directives and their level of knowledge about the underlying legislation. There were 241 questionnaires sent and 139 were turned, which was a response rate of 58%. About one third of the responders reported having had no experience with advance directives and only 9 directors of intensive care units had dealt with more than 10 advance directives in the previous two years. Life-supporting measures, resuscitation, and mechanical ventilation were the predominantly refused therapies, wishes were mainly expressed concerning pain therapy. A response rate of almost 60% proves the great interest of intensive care professionals in making patient-oriented end-of-life decisions. However, as long as patients do not make use of their right of co-determination, the enactment of the new law can be considered only a first important step forward.

  1. End-of-life costs of medical care for advanced stage cancer patients

    Kovačević Aleksandra

    2015-01-01

    Full Text Available Background/Aim. Cancer, one of the leading causes of mortality in the world, imposes a substantial economic burden on each society, including Serbia. The aim of this study was to evaluate the major cancer cost drivers in Serbia. Methods. A retrospective, indepth, bottom-up analysis of two combined databases was performed in order to quantify relevant costs. End-of-life data were obtained from patients with cancer, who deceased within the first year of the established diagnose, including basic demographics, diagnosis, tumour histology, medical resource use and related costs, time and cause of death. All costs were allocated to one of the three categories of cancer health care services: primary care (included home care, hospital outpatient and hospital inpatient care. Results. Exactly 114 patients were analyzed, out of whom a high percent (48.25% had distant metastases at the moment of establishing the diagnosis. Malignant neoplasms of respiratory and intrathoracic organs were leading causes of morbidity. The average costs per patient were significantly different according to the diagnosis, with the highest (13,114.10 EUR and the lowest (4.00 EUR ones observed in the breast cancer and melanoma, respectively. The greatest impact on total costs was observed concerning pharmaceuticals, with 42% of share (monoclonal antibodies amounted to 34% of all medicines and 14% of total costs, followed by oncology medical care (21%, radiation therapy and interventional radiology (11%, surgery (9%, imaging diagnostics (9% and laboratory costs (8%. Conclusion. Cancer treatment incurs high costs, especially for end-of-life pharmaceutical expenses, ensued from medical personnel tendency to improve such patients’ quality of life in spite of nearing the end of life. Reimbursement policy on monoclonal antibodies, in particular at end-stage disease, should rely on cost-effectiveness evidence as well as documented clinical efficiency. [Projekat Ministarstva nauke

  2. Influence of institutional culture and policies on do-not-resuscitate decision making at the end of life.

    Dzeng, Elizabeth; Colaianni, Alessandra; Roland, Martin; Chander, Geetanjali; Smith, Thomas J; Kelly, Michael P; Barclay, Stephen; Levine, David

    2015-05-01

    Controversy exists regarding whether the decision to pursue a do-not-resuscitate (DNR) order should be grounded in an ethic of patient autonomy or in the obligation to act in the patient's best interest (beneficence). To explore how physicians' approaches to DNR decision making at the end of life are shaped by institutional cultures and policies surrounding patient autonomy. We performed semistructured in-depth qualitative interviews of 58 internal medicine physicians from 4 academic medical centers (3 in the United States and 1 in the United Kingdom) by years of experience and medical subspecialty from March 7, 2013, through January 8, 2014. Hospitals were selected based on expected differences in hospital culture and variations in hospital policies regarding prioritization of autonomy vs best interest. This study identified the key influences of institutional culture and policies on physicians' attitudes toward patient autonomy in DNR decision making at the end of life. A hospital's prioritization of autonomy vs best interest as reflected in institutional culture and policy appeared to influence the way that physician trainees conceptualized patient autonomy. This finding may have influenced the degree of choice and recommendations physician trainees were willing to offer regarding DNR decision making. Trainees at hospitals where policies and culture prioritized autonomy-focused approaches appeared to have an unreflective deference to autonomy and felt compelled to offer the choice of resuscitation neutrally in all situations regardless of whether they believed resuscitation to be clinically appropriate. In contrast, trainees at hospitals where policies and culture prioritized best-interest-focused approaches appeared to be more comfortable recommending against resuscitation in situations where survival was unlikely. Experienced physicians at all sites similarly did not exclusively allow their actions to be defined by policies and institutional culture and were

  3. [Forgoing treatments: a kind of euthanasia? A scientific approach to the debate about end of life decisions].

    Riccioni, Luigi; Busca, Maria Teresa; Busatta, Lucia; Orsi, Luciano; Gristina, Giuseppe R

    2016-03-01

    In the last decade an extensive debate on the topic of end of life decisions has developed in western countries, obtaining a worldwide media relevance. Philosophers, theologians, legal experts and doctors, focus their attention on the three thorny issues of the topic: forgoing treatments, euthanasia and assisted suicide. A thorough and respectful discussion on these issues should include all stakeholders - above all palliative care physicians - and should be encouraged in order to understand the views in favor or against the three practices, checking the different moral positions, and analyzing the cultural, social and legal aspects in the background on one hand, and, on the other, their impact on the health care systems. At present, in the fields of communications and politics, the debate related to the topic of these end of life practices is characterized by a confusion of terms and meanings. As an outcome, the term "euthanasia" is misused as a "container" including forgoing treatments, euthanasia and assisted suicide, while palliative sedation is wrongly considered as a procedure to cause death. This confusing approach does not permit to understand the real issues at the stake, keeping the debate at the tabloid level. Conversely, sharing the precise meaning of the words is the only way to provide tools to make rational, autonomous and responsible decisions, allowing individual informed choices in compliance with the principle of autonomy. This article is not aimed to take a moral stand in favor or against forgoing treatments, euthanasia and assisted suicide. Through an analysis based on scientific criteria, the authors firstly review the definitions of these three practices, examining the concepts enclosed in each term; secondly, they offer a glance on the legal approach to end of life issues in western countries; lastly, they investigate the relationship between these practices and palliative care culture in light of the medical societies official statements

  4. Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands.

    Brouwer, Marije; Maeckelberghe, Els; DE Weerd, Willemien; Verhagen, Eduard

    2018-07-01

    In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is

  5. How the mass media report social statistics: a case study concerning research on end-of-life decisions.

    Seale, Clive

    2010-09-01

    The issue of whether it is right to be concerned about the accuracy with which mass media report social scientific research is explored through a detailed case study of media reporting of two surveys of UK doctors' end-of-life decision-making. Data include press releases, emails and field notes taken during periods of media interest supplemented by a collection of print and broadcast media reports. The case study contributes to existing knowledge about the ways in which mass media establish, exaggerate and otherwise distort the meaning of statistical findings. Journalists ignored findings that did not fit into existing media interest in the 'assisted dying' story and were subject to pressure from interest groups concerned to promote their own interpretations and viewpoints. Rogue statistics mutated as they were set loose from their original research report context and were 'laundered' as they passed from one media report to another. Yet media accounts of the research, fuelling an already heated public debate about ethical issues in end-of-life care, arguably acted as a conduit for introducing new considerations into this debate, such as the role played by sedation at the end of life, the extent to which euthanasia is practiced outside the law, and the extent of medical opposition to the legalisation of assisted dying. The expectation that accuracy and comprehensiveness should be the sole criteria for judging journalists' reports is, finally, considered to be unrealistic and it is argued that social scientists need to understand and adapted to the conditions under which mass media reporting operates if they are to succeed in introducing the findings of social research into public debates. Copyright (c) 2010 Elsevier Ltd. All rights reserved.

  6. East meets West: cross-cultural perspective in end-of-life decision making from Indian and German viewpoints.

    Chattopadhyay, Subrata; Simon, Alfred

    2008-06-01

    Culture creates the context within which individuals experience life and comprehend moral meaning of illness, suffering and death. The ways the patient, family and the physician communicate and make decisions in the end-of-life care are profoundly influenced by culture. What is considered as right or wrong in the healthcare setting may depend on the socio-cultural context. The present article is intended to delve into the cross-cultural perspectives in ethical decision making in the end-of-life scenario. We attempt to address the dynamics of the roles of patient, family and physician therein across two countries from East and West, namely, India and Germany. In India, where illness is more a shared family affair than an individual incident, a physician is likely to respect the family's wishes and may withhold the [Symbol: see text]naked truth' about the diagnosis of a fatal disease to the patient. In Germany, a physician is legally required to inform the patient about the disease. In India, advance directive being virtually non-existent, the family acts as the locus of the decision-making process, taking into account the economic cost of available medical care. In Germany, advance directive is regarded as mandatory and healthcare is covered by insurance. Family and the physician appear to play larger roles in ethical decision making for patients in India than for those in Germany, who place greater emphasis on autonomy of the individual patient. Our study explicates how culture matters in ethical decision-making and why the bioethical discourse is necessary in the concrete realities of the socio-cultural context. To explore the possibility of finding a common ground of morality across different cultures while acknowledging and respecting cultural diversity, thus remains a formidable challenge for the bioethicists.

  7. Family factors in end-of-life decision-making: family conflict and proxy relationship.

    Parks, Susan Mockus; Winter, Laraine; Santana, Abbie J; Parker, Barbara; Diamond, James J; Rose, Molly; Myers, Ronald E

    2011-02-01

    Few studies have examined proxy decision-making regarding end-of-life treatment decisions. Proxy accuracy is defined as whether proxy treatment choices are consistent with the expressed wishes of their index elder. The purpose of this study was to examine proxy accuracy in relation to two family factors that may influence proxy accuracy: perceived family conflict and type of elder-proxy relationship. Telephone interviews with 202 community-dwelling elders and their proxy decision makers were conducted including the Life-Support Preferences Questionnaire (LSPQ), and a measure of family conflict, and sociodemographic characteristics, including type of relationship. Elder-proxy accuracy was associated with the type of elder-proxy relationship. Adult children demonstrated the lowest elder-proxy accuracy and spousal proxies the highest elder-proxy accuracy. Elder-proxy accuracy was associated with family conflict. Proxies reporting higher family conflict had lower elder-proxy accuracy. No interaction between family conflict and relationship type was revealed. Spousal proxies were more accurate in their substituted judgment than adult children, and proxies who perceive higher degree of family conflict tended to be less accurate than those with lower family conflict. Health care providers should be aware of these family factors when discussing advance care planning.

  8. Chinese familial tradition and Western influence: a case study in Singapore on decision making at the end of life.

    Ho, Zheng Jie Marc; Radha Krishna, Lalit Kumar; Yee, Chung Pheng Alethea

    2010-12-01

    Decision making for an incompetent patient at the end of life is difficult for both family members and physicians alike. Often, palliative care teams are tasked with weaving through opinions, emotions, and goals in search for an amenable solution. Occasionally, these situations get challenging. We present the case of an elderly Chinese Singaporean with metastatic cancer, whose family and physicians had conflicting goals of care. The former was adamant on treating the patient's disease with an untested drug, whereas the latter aimed to treat his symptoms with more conventional medication. Drug-drug interactions prevented treatment with both. Beginning with a discussion of the patient's best interest, we delve into the Singaporean context to show how culture affects medical decision making. Confucianism and filial piety are the values on which this family's workings were based. In an analysis of what this entails, we attempt to explain the significant and assertive family involvement in the decision-making process and their insistence on using novel medications, having exhausted conventional interventions. Within this mix were Western influences, too. Through the Internet, family members have become more informed and empowered in decision making, wresting the traditional paternalistic role of physicians in favor of "patient autonomy." An understanding of such dynamic facets will help better tailor culturally appropriate approaches to such complex situations. Copyright © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  9. Conceptualizing Surrogate Decision-Making at End of Life in the Intensive Care Unit using Cognitive Task Analysis

    Dionne-Odom, J. Nicholas; Willis, Danny G.; Bakitas, Marie; Crandall, Beth; Grace, Pamela J.

    2014-01-01

    Background Surrogate decision-makers (SDMs) face difficult decisions at end of life (EOL) for decisionally incapacitated intensive care unit (ICU) patients. Purpose Identify and describe the underlying psychological processes of surrogate decision-making for adults at EOL in the ICU. Method Qualitative case study design using a cognitive task analysis (CTA) interviewing approach. Participants were recruited from October 2012 to June 2013 from an academic tertiary medical center’s ICU located in the rural Northeastern United States. Nineteen SDMs for patients who had died in the ICU completed in-depth semi-structured CTA interviews. Discussion The conceptual framework formulated from data analysis reveals that three underlying, iterative, psychological dimensions: gist impressions, distressing emotions, and moral intuitions impact a SDM’s judgment about the acceptability of either the patient’s medical treatments or his or her condition. Conclusion The framework offers initial insights about the underlying psychological processes of surrogate decision-making and may facilitate enhanced decision support for SDMs. PMID:25982772

  10. A model for emergency department end-of-life communications after acute devastating events--part I: decision-making capacity, surrogates, and advance directives.

    Limehouse, Walter E; Feeser, V Ramana; Bookman, Kelly J; Derse, Arthur

    2012-09-01

    Making decisions for a patient affected by sudden devastating illness or injury traumatizes a patient's family and loved ones. Even in the absence of an emergency, surrogates making end-of-life treatment decisions may experience negative emotional effects. Helping surrogates with these end-of-life decisions under emergent conditions requires the emergency physician (EP) to be clear, making medical recommendations with sensitivity. This model for emergency department (ED) end-of-life communications after acute devastating events comprises the following steps: 1) determine the patient's decision-making capacity; 2) identify the legal surrogate; 3) elicit patient values as expressed in completed advance directives; 4) determine patient/surrogate understanding of the life-limiting event and expectant treatment goals; 5) convey physician understanding of the event, including prognosis, treatment options, and recommendation; 6) share decisions regarding withdrawing or withholding of resuscitative efforts, using available resources and considering options for organ donation; and 7) revise treatment goals as needed. Emergency physicians should break bad news compassionately, yet sufficiently, so that surrogate and family understand both the gravity of the situation and the lack of long-term benefit of continued life-sustaining interventions. EPs should also help the surrogate and family understand that palliative care addresses comfort needs of the patient including adequate treatment for pain, dyspnea, or anxiety. Part I of this communications model reviews determination of decision-making capacity, surrogacy laws, and advance directives, including legal definitions and application of these steps; Part II (which will appear in a future issue of AEM) covers communication moving from resuscitative to end-of-life and palliative treatment. EPs should recognize acute devastating illness or injuries, when appropriate, as opportunities to initiate end-of-life discussions and to

  11. "It's Not that Easy"--Medical Students' Fears and Barriers in End-of-Life Communication.

    Romotzky, V; Galushko, M; Düsterdiek, A; Obliers, R; Albus, C; Ostgathe, C; Voltz, R

    2015-06-01

    This study aims to assess and improve communication education for medical students in palliative care (PC) with the use of simulated patients (SP) in Germany. More specifically, to explore how students evaluate the use of SP for end-of-life communication training and which fears and barriers arise. A pilot course was implemented. Qualitative content analysis was used to analyse transcribed recordings of the course. Pre- and post-course questionnaires containing open-ended questions ascertained students' motivation for participating, their preparation within their degree programme and whether they felt they had learned something important within the course. Seventeen medical students in their third to fourth year of education (age 22-31) participated in the five-session course and answered the questionnaires (pre n = 17, post n = 12). Students felt insufficiently prepared and insecure. Discussing end-of-life issues was experienced as challenging and emotionally moving. Within the conversations, although students sometimes showed blocking behaviour in reaction to emotional impact, they valued the consideration of emotional aspects as very important. The course was overall highly appreciated and valued as being helpful. The communication situation with the SP was perceived as authentic. Ten out of 12 students confirmed to have learned something important (post course). Our results indicate an urgent need for better communication training for medical students. Due to the fact that bedside teaching in PC is not feasible for all students, training with standardized SP can be a way to generate an authentic learning situation. Techniques to address fears and blocking behaviour should, however, also be considered.

  12. Attitudes, experiences, and beliefs affecting end-of-life decision-making among homeless individuals.

    Tarzian, Anita J; Neal, Maggie T; O'Neil, J Anne

    2005-02-01

    Individuals who are homeless may encounter various barriers to obtaining quality end-of-life (EOL) care, including access barriers, multiple sources of discrimination, and lack of knowledge among health care providers (HCPs) of their preferences and decision-making practices. Planning for death with individuals who have spent so much energy surviving requires an understanding of their experiences and preferences. This study sought to increase HCPs' awareness and understanding of homeless or similarly marginalized individuals' EOL experiences and treatment preferences. Focus groups were conducted with homeless individuals using a semi-structured interview guide to elicit participants' EOL experiences, decision-making practices, and personal treatment preferences. Five focus groups were conducted with 20 inner-city homeless individuals (4 per group) at a free urban health care clinic for homeless individuals in the United States. Sixteen of the 20 participants were African American; 4 were Caucasian. None were actively psychotic. All had experienced multiple losses and drug addiction. Five main themes emerged: valuing an individual's wishes; acknowledging emotions; the primacy of religious beliefs and spiritual experience; seeking relationship-centered care; and reframing advance care planning. The narrative process of this qualitative study uncovered an approach to EOL decision-making in which participants' reasoning was influenced by emotions, religious beliefs, and spiritual experience. Relationship-centered care, characterized by compassion and respectful, two-way communication, was obvious by its described absence--reasons for this are discussed. Recommendations for reframing advance care planning include ways for HCPs to transform advance care planning from that of a legal document to a process of goal-setting that is grounded in human connection, respect, and understanding.

  13. The role of advance directives in end-of-life decisions in Austria: survey of intensive care physicians

    Schopper Andrea

    2010-10-01

    Full Text Available Abstract Background Currently, intensive care medicine strives to define a generally accepted way of dealing with end-of-life decisions, therapy limitation and therapy discontinuation. In 2006 a new advance directive legislation was enacted in Austria. Patients may now document their personal views regarding extension of treatment. The aim of this survey was to explore Austrian intensive care physicians' experiences with and their acceptance of the new advance directive legislation two years after enactment (2008. Methods Under the aegis of the OEGARI (Austrian Society of Anaesthesiology, Resuscitation and Intensive Care an anonymised questionnaire was sent to the medical directors of all intensive care units in Austria. The questions focused on the physicians' experiences regarding advance directives and their level of knowledge about the underlying legislation. Results There were 241 questionnaires sent and 139 were turned, which was a response rate of 58%. About one third of the responders reported having had no experience with advance directives and only 9 directors of intensive care units had dealt with more than 10 advance directives in the previous two years. Life-supporting measures, resuscitation, and mechanical ventilation were the predominantly refused therapies, wishes were mainly expressed concerning pain therapy. Conclusion A response rate of almost 60% proves the great interest of intensive care professionals in making patient-oriented end-of-life decisions. However, as long as patients do not make use of their right of co-determination, the enactment of the new law can be considered only a first important step forward.

  14. What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback.

    Xafis, Vicki; Wilkinson, Dominic; Sullivan, Jane

    2015-04-30

    The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.

  15. "It's like playing with your destiny": Bosnian immigrants' views of advance directives and end-of-life decision-making.

    Searight, H Russell; Gafford, Jennifer

    2005-07-01

    Patient autonomy is a primary value in US health care. It is assumed that patients want to be fully and directly informed about serious health conditions and want to engage in advance planning about medical care at the end-of-life. Written advance directives and proxy decision-makers are vehicles to promote autonomy when patients are no longer able to represent their wishes. Cross-cultural studies have raised questions about the universal acceptance of these health care values among all ethnicities. In the current investigation, Bosnian immigrants were interviewed about their views of physician-patient communication, advance directives, and locus of decision-making in serious illness. Many of the respondents indicated that they did not want to be directly informed of a serious illness. There was an expressed preference for physician- or family-based health care decisions. Advance directives and formally appointed proxies were typically seen as unnecessary and inconsistent with many respondents' personal values. The findings suggest that the value of individual autonomy and control over the health care decisions may not be applicable to cultures with a collectivist orientation.

  16. The Process of End-of-Life Decision-Making in Pediatrics: A National Survey in the Netherlands

    de Vos, Mirjam A.; van der Heide, Agnes; Maurice-Stam, Heleen; Brouwer, Oebele F.; Plötz, Frans B.; Schouten-van Meeteren, Antoinette Y. N.; Willems, Dick L.; Heymans, Hugo S. A.; Bos, Albert P.

    2011-01-01

    OBJECTIVE: The goal of this study was to investigate how Dutch pediatric specialists reach end-of-life decisions, how they involve parents, and how they address conflicts. METHODS: We conducted a national cross-sectional survey among pediatric intensivists, oncologists, neurologists, neurosurgeons,

  17. The Process of End-of-Life Decision-Making in Pediatrics : A National Survey in the Netherlands

    de Vos, Mirjam A.; van der Heide, Agnes; Maurice-Stam, Heleen; Brouwer, Oebele F.; Plotz, Frans B.; Schouten-van Meeteren, Antoinette Y. N.; Willems, Dick L.; Heymans, Hugo S. A.; Bos, Albert P.

    OBJECTIVE: The goal of this study was to investigate how Dutch pediatric specialists reach end-of-life decisions, how they involve parents, and how they address conflicts. METHODS: We conducted a national cross-sectional survey among pediatric intensivists, oncologists, neurologists, neurosurgeons,

  18. Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands

    Brouwer, Marije; Maeckelberghe, Els; de Weerd, Willemien; Verhagen, Eduard

    2018-01-01

    The Netherlands has always been (and continues to be) at the forefront in developing rules and jurisdiction regarding euthanasia and end-of-life decisions. In 2002, this resulted in the Euthanasia Act, which allows euthanasia for patients twelve years of age and older. Following that, in 2005, the

  19. End-of-Life Medical Spending In Last Twelve Months of Life is Lower than Previously Reported

    French, Eric; Aragon, Maria; Mccauley, Jeremy

    2017-01-01

    Although end-of-life medical spending is often viewed as a major component of aggregate medical expenditure, accurate measures of this type of medical spending are scarce. We used detailed health care data for the period 2009–11 from Denmark, England, France, Germany, Japan, the Netherlands, Taiw...... but to spending on people with chronic conditions, which are associated with shorter life expectancies....

  20. End-of-life medical spending in last twelve months of life is lower than previously reported

    French, E.; Klein, Tobias; a., e.

    Although end-of-life medical spending is often viewed as a major component of aggregate medical expenditure, accurate measures of this type of medical spending are scarce. We used detailed health care data for the period 2009–11 from Denmark, England, France, Germany, Japan, the Netherlands, Taiwan,

  1. Emotional Impact of End-of-Life Decisions on Professional Relationships in the ICU: An Obstacle to Collegiality?

    Laurent, Alexandra; Bonnet, Magalie; Capellier, Gilles; Aslanian, Pierre; Hebert, Paul

    2017-12-01

    End-of-life decisions are not only common in the ICU but also frequently elicit strong feelings among health professionals. Even though we seek to develop more collegial interprofessional approaches to care and health decision-making, there are many barriers to successfully managing complex decisions. The aim of this study is to better understand how emotions influence the end-of-life decision-making process among professionals working in ICU. Qualitative study with clinical interviews. All interviews were transcribed verbatim and analyzed thematically using interpretative phenomenological analysis. Two independent ICUs at the "Centre Hospitalier de l'Université de Montréal." Ten physicians and 10 nurses. None. During the end-of-life decision-making process, families and patients restructure the decision-making frame by introducing a strong emotional dimension. This results in the emergence of new challenges quite different from the immediacy often associated with intensive care. In response to changes in decision frames, physicians rely on their relationship with the patient's family to assist with advanced care decisions. Nurses, however, draw on their relationship and proximity to the patient to denounce therapeutic obstinacy. Our study suggests that during the end-of-life decision-making process, nurses' feelings toward their patients and physicians' feelings toward their patients' families influence the decisions they make. Although these emotional dimensions allow nurses and physicians to act in a manner that is consistent with their professional ethics, the professionals themselves seem to have a poor understanding of these dimensions and often overlook them, thus hindering collegial decisions.

  2. A retrospective study of end-of-life care decisions in the critically Ill in a surgical intensive care unit

    Yi Lin Lee

    2018-01-01

    Full Text Available Aim: Progress in medical care and technology has led to patients with more advanced illnesses being admitted to the Intensive Care Unit (ICU. The practice of approaching end-of-life (EOL care decisions and limiting care is well documented in Western literature but unknown in Singapore. We performed a retrospective cohort study to describe the practice of EOL care in patients dying in a Singapore surgical ICU (SICU. The surgical critical care population was chosen as it is unique because surgeons are frequently involved in the EOL process. Methods: All consecutive patients aged 21 and above admitted to the SICU from July 2011 to March 2012, and who passed away in the ICU or within 7 days of discharge from the ICU (to account for transferred patients out of the ICU after end-of life care decisions were made and subsequently passed away were included in the study. Results: There were 473 SICU admissions during this period, out of which 53 were included with a mean age of 67.2 ± 11.1 years. EOL discussions were held in 81.1% of patients with a median time from admission to first discussion at 1 day (IQR 0–2.75 and a median number of ICU discussion of 1 (IQR 1–2. As most patients lacked decision-making capacity (inability to retain and process information secondary to the underlying disease pathology or sedative use, a surrogate was involved: group decision in 27.9%, child in 25.6% and an unclear family nominated member in 20.9%. 28.3% of patients were managed as for full active with resuscitation, 39.6% nonescalation of care, and 32.1% for withdrawal. The main reasons for conservative management (nonescalation and withdrawal of care were certain death in 52.3%, medical futility with minimal response to maximal care (27.3%, and the presence of underlying malignancy (18.2%. There was no significant difference between race or religion among patients for active or conservative management. Conclusion: 71.7% of patients who passed away in the ICU or

  3. Palliative and end of life care communication as emerging priorities in postgraduate medical education

    Roze des Ordons, Amanda; Ajjawi, Rola; Macdonald, John; Sarti, Aimee; Lockyer, Jocelyn; Hartwick, Michael

    2016-01-01

    Background Reliance on surveys and qualitative studies of trainees to guide postgraduate education about palliative and end of life (EOL) communication may lead to gaps in the curriculum. We aimed to develop a deeper understanding of internal medicine trainees’ educational needs for a palliative and EOL communication curriculum and how these needs could be met. Methods Mixed methods, including a survey and focus groups with trainees, and interviews with clinical faculty and medical educators, were applied to develop a broader perspective on current experiences and needs for further education. Quantitative descriptive and thematic analyses were conducted. Results Surveyed trainees were least confident and least satisfied with teaching in counseling about the emotional impact of emergencies and discussing organ donation. Direct observation with feedback, small group discussion, and viewing videos of personal consultations were perceived as effective, yet infrequently identified as instructional methods. Focus groups and interviews identified goals of care conversations as the highest educational priority, with education adapted to learner needs and accompanied by feedback and concurrent clinical and organizational support. Conclusions Our work expands on previous research describing needs for postgraduate education in palliative and EOL communication to include the importance of support, culture change, and faculty development, and provides insight into why such needs exist. PMID:27103952

  4. End-of-life care communications and shared decision-making in Norwegian nursing homes--experiences and perspectives of patients and relatives.

    Gjerberg, Elisabeth; Lillemoen, Lillian; Førde, Reidun; Pedersen, Reidar

    2015-08-19

    Involving nursing home patients and their relatives in end-of-life care conversations and treatment decisions has recently gained increased importance in several Western countries. However, there is little knowledge about how the patients themselves and their next-of-kin look upon involvement in end-of-life care decisions. The purpose of this paper is to explore nursing home patients' and next-of-kin's experiences with- and perspectives on end-of-life care conversations, information and shared decision-making. The study has a qualitative and explorative design, based on a combination of individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 33 relatives. The data was analysed applying a "bricolage" approach". Participation was based on informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. Few patients and relatives had participated in conversations about end-of-life care. Most relatives wanted such conversations, while the patients' opinions varied. With some exceptions, patients and relatives wanted to be informed about the patient's health condition. The majority wanted to be involved in the decision-making process, but leave the final decisions to the health professionals. Among the patients, the opinion varied; some patients wanted to leave the decisions more or less completely to the nursing home staff. Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed these questions with their family. The relatives' opinions of the patient's preferences were mainly based on assumptions; they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these questions. Nursing home staff should initiate conversations about preferences for end-of-life care, assisting patients and relatives in talking about these issues, while at the same time being sensitive to the diversity in

  5. Factors influencing the development of end-of-life communication skills: A focus group study of nursing and medical students.

    Gillett, Karen; O'Neill, Bernadette; Bloomfield, Jacqueline G

    2016-01-01

    Poor communication between health care professionals and dying patients and their families results in complaints about end-of-life care. End-of-life communication skills should be a core part of nursing and medical education but research suggests that qualified doctors and nurses find this a challenging area of practice. The aim of this study was to explore factors influencing the development of end-of-life communication skills by nursing and medical students. A qualitative study comprising five focus groups. Second year undergraduate nursing (n=9 across 2 focus groups) and fourth year undergraduate medical students (n=10 across 3 focus groups) from a London University. Barriers and facilitators influenced nursing and medical students' experience of communication with dying patients and their families in clinical practice. Extrinsic barriers included gatekeeping by qualified staff and lack of opportunity to make sense of experiences through discussion. Intrinsic barriers included not knowing what to say, dealing with emotional responses, wasting patients' time, and concerns about their own ability to cope with distressing experiences. Facilitating factors included good role models, previous experience, and classroom input. In addition to clinical placements, formal opportunities for reflective discussion are necessary to facilitate the development of students' confidence and skills in end-of-life communication. For students and mentors to view end-of-life communication as a legitimate part of their learning it needs to be specified written practice-learning outcome. Mentors and supervisors may require training to enable them to facilitate students to develop end-of-life communication skills. Copyright © 2015 Elsevier Ltd. All rights reserved.

  6. Family factors affect clinician attitudes in pediatric end-of-life decision making: a randomized vignette study.

    Ruppe, Michael D; Feudtner, Chris; Hexem, Kari R; Morrison, Wynne E

    2013-05-01

    Conflicts between families and clinicians in pediatric end-of-life (EOL) care cause distress for providers, dissatisfaction for patients' families, and potential suffering for terminally ill children. We hypothesized that family factors might influence clinician decision making in these circumstances. We presented vignettes concerning difficult EOL decision making, randomized for religious objection to therapy withdrawal and perceived level of family involvement, to clinicians working in three Children's Hospital intensive care units. Additionally, attitudes about EOL care were assessed. Three hundred sixty-four respondents completed the questionnaire, for an overall response rate of 54%. Respondents receiving the "involved family" vignette were more likely to agree to continue medical care indefinitely (Pfamilies had nonreligious objections to withdrawal (P=0.05). Respondents who thought that a fear of being sued affected decisions were less likely to pursue unilateral withdrawal (odds ratio 0.8, 95% CI=0.6-0.9). Those who felt personal distress as a result of difficult EOL decision making, thought they often provided "futile" care, or those who felt EOL care was effectively addressed at the institution were less likely to want to defer to the parents' wishes (range of odds ratios 0.7-1). In this randomized vignette study, we have shown that family factors, particularly how involved a family seems to be in a child's life, affect what clinicians think is ethically appropriate in challenging EOL cases. Knowledge of how a family's degree of involvement may affect clinicians should be helpful to the clinical ethics consultants and offer some degree of insight to the clinicians themselves. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  7. [Discontinuation of potentially inappropriate medications at the end of life: perspectives from patients, their relatives, and physicians

    Geijteman, E.C.; Tempelman, M.M.; Dees, M.K.; Huisman, B.A.H.; Perez, R.S.; Zuylen, L. van; Heide, A. van der

    2017-01-01

    OBJECTIVE: To obtain insight into the perspectives of patients, relatives and physicians towards potentially inappropriate medications (PIMs) at the end of life. DESIGN: Qualitative interview study. METHOD: An analysis of in-depth interviews with 17 patients who were diagnosed as having a life

  8. Supporting End of Life Decision Making: Case Studies of Relational Closeness in Supported Decision Making for People with Severe or Profound Intellectual Disability

    Watson, Joanne; Wilson, Erin; Hagiliassis, Nick

    2017-01-01

    Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.…

  9. End-of-life mental health assessments for older aged, medically ill persons with expressed desire to die.

    Weinberger, Linda E; Sreenivasan, Shoba; Garrick, Thomas

    2014-01-01

    In recent years, assisted suicide has been legalized in four states for those who are terminally ill and wish to end their lives with the assistance of lethal doses of medications prescribed by a physician. The ethics-related and legal questions raised by end-of-life suicide and decisional capacity to refuse treatment assessments are complex. In treating patients with end-stage medical conditions or disorders that severely affect the future quality of their lives, clinicians tend to engage in suicide prevention at all costs. Overriding the patient's expressed desire to die conflicts with another value, however, that of the individual's right to autonomy. We provide a framework for understanding these difficult decisions, by providing a review of the epidemiology of suicide in later life; reviewing findings from a unique dataset of suicides among the elderly obtained from the Los Angeles County Coroner's Office, as well as data from states with legalized assisted suicide; presenting a discussion of the two frameworks of suicidal ideation as a pathological versus an existential reaction; and giving a case example that highlights the dilemmas faced by clinicians addressing decisional capacity to refuse treatment in an elderly, medically ill patient who has expressed the wish to die. © 2014 American Academy of Psychiatry and the Law.

  10. Older Adults Making End of Life Decisions: An Application of Roy's Adaptation Model

    Weihua Zhang

    2013-01-01

    Full Text Available Purpose. The purpose of this study was to identify variables that influenced completion of advanced directives in the context of adaptation from national data in older adults. Knowledge gained from this study would help us identify factors that might influence end of life discussions and shed light on strategies on effective communication on advance care planning. Design and Method. A model-testing design and path analysis were used to examine secondary data from 938 participants. Items were extracted from the data set to correspond to variables for this study. Scales were constructed and reliabilities were tested. Results. The final path model showed that physical impairment, self-rated health, continuing to work, and family structure had direct and indirect effects on completion of advanced directives. Five percent of the variance was accounted for by the path analysis. Conclusion. The variance accounted for by the model was small. This could have been due to the use of secondary data and limitations imposed for measurement. However, health care providers and families should explore patient’s perception of self-health as well as their family and work situation in order to strategize a motivational discussion on advance directive or end of life care planning.

  11. Communication skills training for dialysis decision-making and end-of-life care in nephrology.

    Schell, Jane O; Green, Jamie A; Tulsky, James A; Arnold, Robert M

    2013-04-01

    Nephrology fellows often face difficult conversations about dialysis initiation or withdrawal but are frequently unprepared for these discussions. Despite evidence that communication skills are teachable, few fellowship programs include such training. A communication skills workshop for nephrology fellows (NephroTalk) focused on delivering bad news and helping patients define care goals, including end-of-life preferences. This 4-hour workshop, held in October and November 2011, included didactics and practice sessions with standardized patients. Participants were nephrology fellows at Duke University and the University of Pittsburgh (n=22). Pre- and post-workshop surveys evaluated efficacy of the curriculum and measured changes in perceived preparedness on the basis on workshop training. Overall, 14% of fellows were white and 50% were male. Less than one-third (6 of 22) reported prior palliative care training. Survey response rate varied between 86% and 100%. Only 36% (8 of 22) and 38% (8 of 21) of respondents had received structured training in discussions for dialysis initiation or withdrawal. Respondents (19 of 19) felt that communication skills were important to being a "great nephrologist." Mean level of preparedness as measured with a five-point Likert scale significantly increased for all skills (range, 0.5-1.14; Pdecision-making and end-of-life care.

  12. Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments

    Olsen, Molly L.; Swetz, Keith M.; Mueller, Paul S.

    2010-01-01

    Palliative sedation (PS) is the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life. Although uncommon, some patients undergoing aggressive symptom control measures still have severe suffering from underlying disease or therapy-related adverse effects. In these circumstances, use of PS is considered. Although the goal is to provide relief in an ethically acceptable way to the patient, family, and health care team, health care professionals often voice concerns whether such treatment is necessary or whether such treatment equates to physician-assisted suicide or euthanasia. In this review, we frame clinical scenarios in which PS may be considered, summarize the ethical underpinnings of the practice, and further differentiate PS from other forms of end-of-life care, including withholding and/or withdrawing life-sustaining therapy and physician-assisted suicide and euthanasia. PMID:20805544

  13. Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey.

    Chambaere, Kenneth; Rietjens, Judith A C; Smets, Tinne; Bilsen, Johan; Deschepper, Reginald; Pasman, H Roeline W; Deliens, Luc

    2012-06-18

    A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the 'slippery slope' hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. We performed a post-mortem survey among physicians certifying a large representative sample (n = 6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or

  14. Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey

    Chambaere Kenneth

    2012-06-01

    Full Text Available Abstract Background A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the ‘slippery slope’ hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. Method We performed a post-mortem survey among physicians certifying a large representative sample (n = 6927 of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. Results While the rates of non-treatment decisions (NTD and administration of life ending drugs without explicit request (LAWER did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS and euthanasia/assisted suicide (EAS, as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. Conclusion Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The

  15. Decisions at the end of life: have we come of age?

    Scandrett Karen

    2010-10-01

    Full Text Available Abstract Decision making is a complex process and it is particularly challenging to make decisions with, or for, patients who are near the end of their life. Some of those challenges will not be resolved - due to our human inability to foresee the future precisely and the human proclivity to change stated preferences when faced with reality. Other challenges of the decision-making process are manageable. This commentary offers a set of approaches which may lead to progress in this field. One clearly desirable approach can and should be used more often than it is: the routine inclusion of discussions about the goals of care and documentation with all patients who have a poor prognosis. The match between a patient's goals and the care received should be the gold standard for quality palliative care. Planning for future situations is necessary but hard. In order to achieve efficient elicitation and documentation of advance care planning, research is needed on each individual's thresholds for transitioning from curative to palliative intent and on the trajectory of changed preferences when illness occurs. Another clearly desirable approach is the documentation and use of community preferences, so that proxies making decisions without guidance from the patient can at least know what the majority of people considering similar situations chose to do. Part of the challenge of achieving 'quality dying' may have to do with the still current (mainly Western tendency to a death-denying culture and the inability of dying people to enter into the dying role. Awareness of the tasks of the dying role and the provision of time and space for those tasks during the delivery of medical care is essential. Medicine needs to continue to enhance the existential maturity of our profession, our patients and the cultures in which we practice. This state of mind should provide for decisions made with a more settled acceptance of mortality and with more awareness of the

  16. Are advance directives helpful for good end of life decision making: a cross sectional survey of health professionals.

    Peicius, Eimantas; Blazeviciene, Aurelija; Kaminskas, Raimondas

    2017-06-05

    This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union (EU) where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, a study was designed to examine health professionals' understanding and preferences related to advance directives. In addition, the study sought to explore the views of health care professionals of the application of Advance Directives (AD) in clinical practice in Lithuania. A cross-sectional survey was conducted by interviewing 478 health professionals based at major health care centers in Kaunas district, Lithuania. The design of the study included the use of a questionnaire developed for this study and validated by a pilot study. The collected data were analyzed using standard descriptive statistical methods. The analysis of knowledge about AD revealed some statistically significant differences when comparing the respondents' profession and gender. The analysis also indicated key emerging themes among respondents including tranquility of mind, the longest possible life expectancy and freedom of choice. Further, the study findings revealed that more than half of the study participants preferred to express their will while alive by using advance directives. The study findings revealed a low level of knowledge on advance directives among health professionals. Most health professionals agreed that AD's improved end-of-life decision making while the majority of physicians appreciated AD as the best tool for sharing responsibilities in clinical practice in Lithuania. More physicians than nurses preferred the presence of advance directives to support their decision making in end-of-life situations.

  17. "What the patient wants…": Lay attitudes towards end-of-life decisions in Germany and Israel.

    Inthorn, Julia; Schicktanz, Silke; Rimon-Zarfaty, Nitzan; Raz, Aviad

    2015-08-01

    National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople (religious, secular, affected, and non-affected) were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both countries, respect for patient autonomy and patients' wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient's wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture.

  18. Cancer drug funding decisions in Scotland: impact of new end-of-life, orphan and ultra-orphan processes.

    Morrell, Liz; Wordsworth, Sarah; Fu, Howell; Rees, Sian; Barker, Richard

    2017-08-30

    The Scottish Medicines Consortium evaluates new drugs for use in the National Health Service in Scotland. Reforms in 2014 to their evaluation process aimed to increase patient access to new drugs for end-of-life or rare conditions; the changes include additional steps in the process to gain further information from patients and clinicians, and for revised commercial agreements. This study examines the extent of any impact of the reforms on funding decisions. Data on the Scottish Medicines Consortium's funding decisions during 24 months post-reform were extracted from published Advice, for descriptive statistics and thematic analysis. Comparison data were extracted for the 24 months pre-reform. Data on decisions for England by the National Institute for Clinical and Health Excellence for the same drugs were extracted from published Technology Appraisals. The new process was used by 90% (53/59) of cancer submissions. It is triggered if the initial advice is not to recommend, and this risk-of-rejection level is higher than in the pre-period. Thirty-eight cancer drugs obtained some level of funding through the new process, but there was no significant difference in the distribution of decision types compared to the pre-reform period. Thematic analysis of patient and clinician input showed no clear relationship between issues raised and funding decision. Differences between SMC's and NICE's definitions of End-of-Life did not fully explain differences in funding decisions. The Scottish Medicines Consortium's reforms have allowed funding of up to 38 cancer drugs that might previously have been rejected. However, the contribution of specific elements of the reforms to the final decision is unclear. The process could be improved by increased transparency in how the non-quantitative inputs influence decisions. Some disparities in funding decisions between England and Scotland are likely to remain despite recent process convergence.

  19. Definition of Terms Used in Limitation of Treatment and Providing Palliative Care at the End of Life: The Indian Council of Medical Research Commission Report

    Salins, Naveen; Gursahani, Roop; Mathur, Roli; Iyer, Shivakumar; Macaden, Stanley; Simha, Nagesh; Mani, Raj Kumar; Rajagopal, M. R.

    2018-01-01

    Background: Indian hospitals, in general, lack policies on the limitation of inappropriate life-sustaining interventions at the end of life. To facilitate discussion, preparation of guidelines and framing of laws, terminologies relating to the treatment limitation, and providing palliative care at the end-of-life care (EOLC) need to be defined and brought up to date. Methodology: This consensus document on terminologies and definitions of terminologies was prepared under the aegis of the Indian Council of Medical Research. The consensus statement was created using Nominal Group and Delphi Method. Results: Twenty-five definitions related to the limitations of treatment and providing palliative care at the end of life were created by reviewing existing international documents and suitably modifying it to the Indian sociocultural context by achieving national consensus. Twenty-five terminologies defined within the scope of this document are (1) terminal illness, (2) actively dying, (3) life-sustaining treatment, (4) potentially inappropriate treatment, (5) cardiopulmonary resuscitation (CPR), (6) do not attempt CPR, (7) withholding life-sustaining treatment, (8) withdrawing life-sustaining treatment, (9) euthanasia (10) active shortening of the dying process, (11) physician-assisted suicide, (12) palliative care, (13) EOLC, (14) palliative sedation, (15) double effect, (16) death, (17) best interests, (18) health-care decision-making capacity, (19) shared decision-making, (20) advance directives, (21) surrogates, (22) autonomy, (23) beneficence, (24) nonmaleficence, and (25) justice.

  20. Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses

    Carey Candrian

    2017-04-01

    Full Text Available Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual’s acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable. One goal of these interactions is ensuring patients and families have accurate and clear information about hospice care to facilitate informed decisions. So inconsistent are practices across hospices in consenting patients that a 2016 report from the Office of Inspector General (OIG entitled “Hospices should improve their election statements and certifications of terminal illness” called for complete and accurate election statements to ensure that hospice patients and their caregivers can make informed decisions and understand the costs and benefits of choosing hospice care. Whether complete and accurate information at initial admission visits improves interactions and outcomes is unknown. Our recent qualitative work investigating interactions between patients, caregivers, and hospice nurses has uncovered diverse and often diverging stakeholder-specific expectations and perceptions which if not addressed can create discordance and inhibit decision-making. This paper focuses on better understanding the communication dynamics and practices involved in hospice admission interactions in order to design more effective interactions and support the mandate from the OIG to provide hospice patients and their caregivers with accurate and complete information. This clarity is particularly important when discussing the non-curative nature of hospice care, and the

  1. Making decisions at the end of life when caring for a person with dementia: a literature review to explore the potential use of heuristics in difficult decision-making.

    Mathew, R; Davies, N; Manthorpe, J; Iliffe, S

    2016-07-19

    Decision-making, when providing care and treatment for a person with dementia at the end of life, can be complex and challenging. There is a lack of guidance available to support practitioners and family carers, and even those experienced in end of life dementia care report a lack of confidence in decision-making. It is thought that the use of heuristics (rules of thumb) may aid decision-making. The aim of this study is to identify whether heuristics are used in end of life dementia care, and if so, to identify the context in which they are being used. A narrative literature review was conducted taking a systematic approach to the search strategy, using the Centre for Reviews and Dissemination guidelines. Rapid appraisal methodology was used in order to source specific and relevant literature regarding the use of heuristics in end of life dementia care. A search using terms related to dementia, palliative care and decision-making was conducted across 4 English language electronic databases (MEDLINE, EMBASE, PsycINFO and CINAHL) in 2015. The search identified 12 papers that contained an algorithm, guideline, decision tool or set of principles that we considered compatible with heuristic decision-making. The papers addressed swallowing and feeding difficulties, the treatment of pneumonia, management of pain and agitation, rationalising medication, ending life-sustaining treatment, and ensuring a good death. The use of heuristics in palliative or end of life dementia care is not described in the research literature. However, this review identified important decision-making principles, which are largely a reflection of expert opinion. These principles may have the potential to be developed into simple heuristics that could be used in practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  2. Decision Making Among Older Adults at the End of Life: A Theoretical Perspective.

    Romo, Rafael D; Dawson-Rose, Carol S; Mayo, Ann M; Wallhagen, Margaret I

    Understanding changes in decision making among older adults across time is important for health care providers. We examined how older adults with a limited prognosis used their perception of prognosis and health in their decision-making processes and related these findings to prospect theory. The theme of decision making in the context of ambiguity emerged, reflecting how participants used both prognosis and health to value choices, a behavior not fully captured by prospect theory. We propose an extension of the theory that can be used to better visualize decision making at this unique time of life among older adults.

  3. Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors.

    Yamamoto, Sena; Arao, Harue; Masutani, Eiko; Aoki, Miwa; Kishino, Megumi; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori

    2017-05-01

    Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P decision making without knowing the patient's wishes and values (P making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  4. End-of-life decisions and the law: a new law for South Africa?

    A survey done in 1992 shows that many. South African ... patient's earlier expressed preference, is a violation of ... patients' living wills and medical powers of ... or older may refuse life-sustaining medical .... of fair and rational resource alloca-.

  5. Communication Tools for End-of-Life Decision-Making in Ambulatory Care Settings: A Systematic Review and Meta-Analysis.

    Oczkowski, Simon J; Chung, Han-Oh; Hanvey, Louise; Mbuagbaw, Lawrence; You, John J

    2016-01-01

    Patients with serious illness, and their families, state that better communication and decision-making with healthcare providers is a high priority to improve the quality of end-of-life care. Numerous communication tools to assist patients, family members, and clinicians in end-of-life decision-making have been published, but their effectiveness remains unclear. To determine, amongst adults in ambulatory care settings, the effect of structured communication tools for end-of-life decision-making on completion of advance care planning. We searched for relevant randomized controlled trials (RCTs) or non-randomized intervention studies in MEDLINE, EMBASE, CINAHL, ERIC, and the Cochrane Database of Randomized Controlled Trials from database inception until July 2014. Two reviewers independently screened articles for eligibility, extracted data, and assessed risk of bias. Grading of Recommendations Assessment, Development, and Evaluation (GRADE) was used to evaluate the quality of evidence for each of the primary and secondary outcomes. Sixty-seven studies, including 46 RCTs, were found. The majority evaluated communication tools in older patients (age >50) with no specific medical condition, but many specifically evaluated populations with cancer, lung, heart, neurologic, or renal disease. Most studies compared the use of communication tools against usual care, but several compared the tools to less-intensive advance care planning tools. The use of structured communication tools increased: the frequency of advance care planning discussions/discussions about advance directives (RR 2.31, 95% CI 1.25-4.26, p = 0.007, low quality evidence) and the completion of advance directives (ADs) (RR 1.92, 95% CI 1.43-2.59, pcare desired and care received by patients (RR 1.17, 95% CI 1.05-1.30, p = 0.004, low quality evidence, 2 RCTs). The use of structured communication tools may increase the frequency of discussions about and completion of advance directives, and concordance between

  6. End-of-life decisions in perinatal care. A view from health-care providers

    Patricia Grether

    2015-11-01

    Full Text Available Objective. To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. Materials and Methods. An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student’s t tests. Results. When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alter- native. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. Conclusions. Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.

  7. A 40-Year History of End-of-Life Offerings in US Medical Schools: 1975-2015.

    Dickinson, George E

    2017-07-01

    The purpose of this longitudinal study of US medical schools over a 40-year period was to ascertain their offerings on end-of-life (EOL) issues. At 5-year intervals, beginning in 1975, US medical schools were surveyed via a questionnaire to determine their EOL offerings. Data were reported with frequency distributions. The Institute of Medicine has encouraged more emphasis on EOL issues over the past 2 decades. Findings revealed that undergraduate medical students in the United States are now exposed to death and dying, palliative care, and geriatric medicine. The inclusion of EOL topics has definitely expanded over the 40-year period as findings reveal that US undergraduate medical students are currently exposed in over 90% of programs to death and dying, palliative care, and geriatric medicine, with the emphasis on these topics varying with the medical programs. Such inclusion should produce future favorable outcomes for undergraduate medical students, patients, and their families.

  8. Identifying and Managing Undue Influence From Family Members in End-of-Life Decisions for Patients With Advanced Cancer.

    Baker, Francis X; Gallagher, Colleen M

    2017-10-01

    Undue influence from family members of patients with advanced cancer remains a serious ethical problem in end-of-life decision making. Despite the wealth of articles discussing the problem of undue influence, little has been written by way of practical guidance to help clinicians identify and effectively manage situations of undue influence. This article briefly lays out how to identify and manage situations of undue influence sensitively and effectively. We explain how undue influence may present itself in the clinic and distinguish it from ethically permissible expressions of relational autonomy. In addition, we lay out a process by which any clinician suspecting undue influence may gather additional information and, if necessary, conduct a family meeting to address the undue influence. It is our hope that by providing clinicians at all levels of patient care with such guidance, they will feel empowered to respond to cases of undue influence when they arise.

  9. [Bioethics in end-of-life decisions in neonatology: Unresolved issues].

    Arnaez, Juan; Tejedor, Juan Carlos; Caserío, Sonia; Montes, María Teresa; Moral, María Teresa; González de Dios, Javier; García-Alix, Alfredo

    2017-12-01

    This document is the result of previous work carried out by different expert groups and submitted to multidisciplinary debate at a Conference about controversial, deficient, or new aspects in the field of neonatal palliative care, such as: 1) the deliberative decision-making process, 2) hospital and domiciliary palliative care, 3) donation after controlled cardiac death, and 4) moral stress in professionals. The most relevant conclusions were: the need to instruct professionals in bioethics and in the deliberative method to facilitate thorough and reasonable decision-making; the lack of development in the field of perinatal palliative care and domiciliary palliative care in hospitals that attend newborns; the need to provide neonatal units with resources that help train professionals in communication skills and in the management of moral distress, as well as delineate operational procedure and guidelines for neonatal organ donation. Copyright © 2017 Asociación Española de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

  10. [End-of-life decisions in cases of vegetative state from the legal point of view].

    Duttge, G

    2011-10-01

    The perspective of having to "vegetate" in a so-called persistent vegetative state over an indefinite period of time is regarded as unacceptable by many people. How to operationalise and enforce the patients "right of self-determination" in such cases is a subject of current medical and ethical debate. In addition, there is great uncertainty about how far and how long further treatment or supply is still indicated in such cases. The article discusses the legal framework and illustrates existing uncertainties and points out those aspects that demand clarification. © Georg Thieme Verlag KG Stuttgart · New York.

  11. Negotiated reorienting: a grounded theory of nurses' end-of-life decision-making in the intensive care unit.

    Gallagher, Ann; Bousso, Regina Szylit; McCarthy, Joan; Kohlen, Helen; Andrews, Tom; Paganini, Maria Cristina; Abu-El-Noor, Nasser Ibrahim; Cox, Anna; Haas, Margit; Arber, Anne; Abu-El-Noor, Mysoon Khalil; Baliza, Michelle Freire; Padilha, Katia Grillo

    2015-04-01

    Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life-sustaining treatment and the shift to comfort and palliative care. These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses' end-of-life (EoL) decision-making practice across cultures. To understand nurses' EoL decision-making practices in ICUs in different cultural contexts. We collected and analysed qualitative data using Grounded Theory. Interviews were conducted with experienced ICU nurses in university or hospital premises in five countries: Brazil, England, Germany, Ireland and Palestine. Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life (EoL) decision-making. The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant. The core category that emerged was 'negotiated reorienting'. Whilst nurses do not make the 'ultimate' EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving). There was consensus regarding the core concept and core practices employed by nurses in the ICUs in the five countries. However

  12. Patients' preferences for participation in treatment decision-making at the end of life: qualitative interviews with advanced cancer patients.

    Brom, Linda; Pasman, H Roeline W; Widdershoven, Guy A M; van der Vorst, Maurice J D L; Reijneveld, Jaap C; Postma, Tjeerd J; Onwuteaka-Philipsen, Bregje D

    2014-01-01

    Patients are often encouraged to participate in treatment decision-making. Most studies on this subject focus on choosing between different curative treatment types. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects. This study aimed to obtain insight into cancer patients' preferences and the reasons for patients' preferred role in treatment decision-making at the end of life. 28 advanced cancer patients were included at the start of their first line treatment. In-depth interviews were held prior to upcoming treatment decisions whether or not to start a life prolonging treatment. The Control Preference Scale was used to start discussing the extent and type of influence patients wanted to have concerning upcoming treatment decision-making. Interviews were audio taped and transcribed. All patients wanted their physician to participate in the treatment decision-making process. The extent to which patients themselves preferred to participate seemed to depend on how patients saw their own role or assessed their own capabilities for participating in treatment decision-making. Patients foresaw a shift in the preferred level of participation to a more active role depending in the later phase of illness when life prolongation would become more limited and quality of life would become more important. Patients vary in how much involvement they would like to have in upcoming treatment decision-making. Individual patients' preferences may change in the course of the illness, with a shift to more active participation in the later phases. Communication about patients' expectations, wishes and preferences for participation in upcoming treatment decisions is of great importance. An approach in which these topics are openly discussed would be beneficial.

  13. [End-of-life decisions: results of the expert-validated questionnaire].

    Ortiz-Gonçalves, Belén; Albarrán Juan, Elena; Labajo González, Elena; Santiago-Sáez, Andrés; Perea-Pérez, Bernardo

    2018-02-02

    To assess the attitudes and knowledge in the life's end about palliative care, advance directives, psychological-physical care, medically assisted suicide and spiritual accompaniment. A cross-sectional study performed in the population at primary health care center of the Autonomous Region of Madrid (Spain). It participated 425 selected people that a simple random was applied in the consultation sheets of health professionals. They analyzed 42 variables of self-administered questionnaire. The surveyed population of Madrid displayed the following characteristics: university studies 58%, 51-70 years 47%, married 60%, and women 61%. 91% would like to decide about their care at life's end. 58% of respondents are aware of palliative care and 53% would request spiritual accompaniment. They know advance directives (50%) but have not made the document. 54% are in favor of legalizing the euthanasia and 42% the assisted suicide. Madrid's people state they would like to decide what care they will receive at life's end and request spiritual accompaniment. Outstanding advocates of euthanasia against assisted suicide. They would like to receive palliative care and complete advance directives documents. To draw comparisons within the population, thereby increasing awareness about social health care resources in Autonomous Region of Madrid, surveys should be conducted in different primary health care centers areas of Madrid. Copyright © 2018 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

  14. End-of-life decisions and the reinvented Rule of Double Effect: a critical analysis.

    Lindblad, Anna; Lynöe, Niels; Juth, Niklas

    2014-09-01

    The Rule of Double Effect (RDE) holds that it may be permissible to harm an individual while acting for the sake of a proportionate good, given that the harm is not an intended means to the good but merely a foreseen side-effect. Although frequently used in medical ethical reasoning, the rule has been repeatedly questioned in the past few decades. However, Daniel Sulmasy, a proponent who has done a lot of work lately defending the RDE, has recently presented a reformulated and more detailed version of the rule. Thanks to its greater precision, this reinvented RDE avoids several problems thought to plague the traditional RDE. Although an improvement compared with the traditional version, we argue that Sulmasy's reinvented RDE will not stand closer scrutiny. Not only has the range of proper applicability narrowed significantly, but, more importantly, Sulmasy fails to establish that there is a morally relevant distinction between intended and foreseen effects. In particular, he fails to establish that there is any distinction that can account for the alleged moral difference between sedation therapy and euthanasia. © 2012 John Wiley & Sons Ltd.

  15. Dances With Denial: Have Medical Oncology Outpatients Conveyed Their End-of-Life Wishes and Do They Want To?

    Waller, Amy; Douglas, Charles; Sanson-Fisher, Rob; Zdenkowski, Nicholas; Pearce, Angela; Evans, Tiffany; Walsh, Justin

    2018-05-01

    Objectives: This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have already discussed and documented their end-of-life (EOL) wishes; (2) when and with whom they would prefer to convey their EOL wishes; (3) the EOL issues they would want to discuss; and (4) the association between perceived cancer status and advance care planning (ACP) participation. Methods: Adult medical oncology outpatients were approached in the waiting room of an Australian tertiary treatment center. Consenting participants completed a pen-and-paper survey assessing participation in ACP, preferences for conveying EOL wishes, timing of EOL discussions, and EOL issues they want to be asked about. Results: A total of 203 patients returned the survey (47% of eligible). EOL discussions occurred more frequently with support persons (47%) than with doctors (7%). Only 14% had recorded their wishes, and 45% had appointed an enduring guardian. Those who perceived their cancer as incurable were more likely to have participated in ACP. If facing EOL, patients indicated that they would want family involved in discussions (85%), to be able to write down EOL wishes (82%), and to appoint enduring guardians (91%). Many (45%) preferred the first discussion to happen when their disease became incurable. Slightly less than one-third thought discussions regarding EOL should be patient-initiated. Most agreed doctors should ask about preferred decision-making involvement (92%), how important it is that pain is managed well (95%), and how important it is to remain conscious (82%). Fewer (55%) wanted to be asked about the importance of care extending life. Conclusions: Many patients would like to have discussions regarding EOL care with their doctor and involve their support persons in this process. Only a small percentage of respondents had discussed EOL care with their doctors, recorded their wishes, or appointed an enduring guardian. The first step requires clinicians to

  16. How do nursing home doctors involve patients and next of kin in end-of-life decisions? A qualitative study from Norway.

    Romøren, Maria; Pedersen, Reidar; Førde, Reidun

    2016-01-14

    Ethically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors' descriptions of how they include the patient and next of kin in end-of-life decisions. We performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation. The doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, many doctors were more concerned about the opinion of next of kin than ensuring the patient's best interest. Many end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient's values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed.

  17. Decision-Making of Patients With Implantable Cardioverter-Defibrillators at End of Life: Family Members' Experiences.

    Lee, Mei Ching; Sulmasy, Daniel P; Gallo, Joseph; Kub, Joan; Hughes, Mark T; Russell, Stuart; Kellogg, Anela; Owens, Sharon G; Terry, Peter; Nolan, Marie T

    2017-07-01

    Many patients with advanced heart failure (HF) experience the life-extending benefits of implantable cardioverter-defibrillators (ICD), but at the end stage of HF, patients may experience shocks with increasing frequency and change the plan for end-of-life (EOL) care including the deactivation of the ICD. This report describes family members' experiences of patients with ICD making decisions at EOL. Understanding the decision-making of patients with ICD at EOL can promote informed decision-making and improve the quality of EOL care. This pilot study used a mixed methods approach to test the effects of a nurse-guided discussion in decision-making about ICD deactivation (turning off the defibrillation function) at the EOL. Interviews were conducted, audiotaped, and transcribed in 2012 to 2013 with 6 family members of patients with advanced HF and ICDs. Three researchers coded the data and identified themes in 2014. Three main themes described family members' experiences related to patients having HF with ICDs making health-care decision at EOL: decision-making preferences, patients' perception on ICD deactivation, and communication methods. Health-care providers need to have knowledge of patients' decision-making preferences. Preferences for decision-making include the allowing of appropriate people to involve and encourages direct conversation with family members even when advance directives is completed. Information of ICD function and the option of deactivation need to be clearly delivered to patients and family members. Education and guidelines will facilitate the communication of the preferences of EOL care.

  18. [Perinatal bioethics: euthanasia or end-of-life decisions? Analysis of the Groningen Protocol].

    Halac, Jacobo; Halac, Eduardo; Moya, Martín P; Olmas, José M; Dopazo, Silvina L; Dolagaray, Nora

    2009-12-01

    The so called "Groningen Protocol" was conceived as a framework to discuss the euthanasia in neonates. Originally, it presents three groups of babies who might be candidates to this option. We analyzed the protocol in its original context and that of the Dutch society in which it was created. The analysis started with a careful reading of the protocol in both English and Dutch versions, translated later into Spanish. The medical and nursing staff participated in discussing it. A final consensus was reached. The Institutional Ethics Committee at our hospital discussed it freely and made recommendations for its application as a guideline to honestly discuss with parents the clinical condition of their babies, without permitting the option included literally in the word euthanasia. We selected four extremely ill infants. Their parents were interviewed at least twice daily: three stages were identified: the initial one of promoting all possible treatments; a second one of guarded and cautious request for the staff to evaluate "suffering", and a last one where requests were made to reduce therapeutic efforts to provide dignified death. A week after the death of their infants, they were presented with the facts of the protocol and the limits of our legal system. In all four cases the parents suggested that they would have chosen ending the life of their infants, in order to avoid them undue suffering. They clearly pointed out that this option emerged as a viable one to them once the ultimate outcome was evident. The protocol must not be viewed as a guideline for euthanasia in newborns, but rather as a mean to discuss the critical condition of an infant with the parents. Its direct implementation in our setting remains difficult. As a clear limitation for its overall application remains the definition of what is considered "unbearable suffering" in newborns, and how to certify when the infant has "no prospect". We emphasize the benefits of securing the help of the Ethics

  19. Feelings of women regarding end-of-life decision making after ultrasound diagnosis of a lethal fetal malformation.

    Benute, Gláucia R G; Nomura, Roseli M Y; Liao, Adolfo W; Brizot, Maria de Lourdes; de Lucia, Mara C S; Zugaib, M

    2012-08-01

    this study investigated the feelings of women regarding end-of-life decision making after ultrasound diagnosis of a lethal fetal malformation. The aim of this study was to present the decision making process of women that chose for pregnancy termination and to present selected speeches of women about their feelings. open psychological interviews conducted by a psychologist immediately after the diagnosis of fetal malformation by ultrasound. Analysis of the results was performed through a content analysis technique. the study was carried out at a public university hospital in Brazil. 249 pregnant women who had received the diagnosis of a severe lethal fetal malformation. fetal anencephaly was the most frequent anomaly detected in 135 cases (54.3%). Termination of pregnancy was decided by 172 (69.1%) patients and legally authorised by the judiciary (66%). The reason for asking for termination was to reduce suffering in all of them. In the 77 women who chose not to terminate pregnancy (30.9%), the reasons were related to feelings of guilt (74%). the results support the importance of psychological counselling for couples when lethal fetal malformation is diagnosed. The act of reviewing moral and cultural values and elements of the unconscious provides assurance in the decision-making process and mitigates the risk of emotional trauma and guilt that can continue long after the pregnancy is terminated. Copyright © 2011 Elsevier Ltd. All rights reserved.

  20. End of Life Issues

    Planning for the end of life can be difficult. But by deciding what end-of-life care best suits your needs when you are healthy, you can ... right choices when the time comes. End-of-life planning usually includes making choices about the following: ...

  1. Decision-making in end of life care. Are we really playing together in the same team?

    Lomero-Martínez, M M; Jiménez-Herrera, M F; Bodí-Saera, M A; Llauradó-Serra, M; Masnou-Burrallo, N; Oliver-Juan, E; Sandiumenge-Camps, A

    2018-05-18

    Limitation of life-sustaining treatment is increasingly common in critical care units, and controlled donation after circulatory death is starting to be included as an option within patient care plans. Lack of knowledge and misunderstandings can place a barrier between healthcare professionals. To determine the perceptions, knowledge and attitudes of physicians and nurses working in intensive care units regarding Limitation of life-sustaining treatment and controlled donation after circulatory death. Cross-sectional study carried out in 13 Spanish hospitals by means of an ad hoc questionnaire. Contingency tables, Pearson's chi-squared test, Student's t-test and the Mann-Whitney u-test were used to carry out descriptive, bivariate and multivariate statistical analyses of responses. Although Limitation of life-sustaining treatment is a widespread practice, the survey revealed that nurses feel excluded from the development of protocols and the decision-making process, whilst the perception of physicians is that they have greater knowledge of the topic, and decisions are reached in consensus. Multi-disciplinary training programmes can help critical healthcare providers to work together with greater coordination, thus benefitting patients and their next of kin by providing excellent end-of-life care. Copyright © 2018 Sociedad Española de Enfermería Intensiva y Unidades Coronarias (SEEIUC). Publicado por Elsevier España, S.L.U. All rights reserved.

  2. A Structured Approach to End-of-Life Decision Making Improves Quality of Care for Patients With Terminal Illness in a Teaching Hospital in Ghana.

    Edwin, Ama Kyerewaa; Johnson McGee, Summer; Opare-Lokko, Edwina Addo; Gyakobo, Mawuli Kotope

    2016-03-01

    To determine whether a structured approach to end-of-life decision-making directed by a compassionate interdisciplinary team would improve the quality of care for patients with terminal illness in a teaching hospital in Ghana. A retrospective analysis was done for 20 patients who consented to participate in the structured approach to end-of-life decision-making. Twenty patients whose care did not follow the structured approach were selected as controls. Outcome measures were nociceptive pain control, completing relationships, and emotional response towards dying. These measures were statistically superior in the study group compared to the control group. A structured approach to end-of-life decision-making significantly improves the quality of care for patients with terminal illness in the domains of pain control, completing relationships and emotional responses towards dying. © The Author(s) 2014.

  3. [The pediatric patient at the end-of-life. A challenge for its identification and treatment. A survey in pediatricians and medical residents].

    Rendón-Macías, Mario Enrique; Olvera-González, Héctor; Villasís-Keever, Miguel Angel

    2011-01-01

    Identification of pediatric patients at the end-of-life is not easy because criteria used are based on adults' criteria. In this survey we explore the children end-of-life definition pediatricians have, as well as to determine which interventions they use when caring a patient at end-of-life. Tertiary referral pediatric hospital. Staff pediatricians (SP) and medical residents (MR). A self-administrated questionnaire was built and validated. It contains five vignettes of pediatric patients: Two with WHO criteria for an end-of-life condition (EC) and three without an end-of-life condition (NEC). PARTICIPANTS identified each patient with or without an end-of-life condition, and which palliative actions they would perform accordingly Their responses were recorded in a 4-option Likert scale. Ordinal regression was used to assess if some of the participants' characteristics were related to the identification of an end-of-life condition. Response rate was 84.2% (128/152); of whom 63 were SP and 65 MR. EC cases were well identified in 90 and 93%, while NEC in 30 and 40%, respectively Palliative actions were more according in EC patients, but around 20% would not provide them. Among NEC patients, there were more disparities of palliative actions to be delivered, and it was statistically significantly. Ordinal regression showed that some participants' characteristics are associated to the appropriate identification of end-of-life patients; however, these factors were not consistent across the five scenarios. Among pediatricians, criteria of end-of-life conditions are not well established, neither the palliative actions. Educational interventions are needed to improve the quality of life of these children.

  4. Is Shared Decision Making for End-of-Life Decisions Associated With Better Outcomes as Compared to Other Forms of Decision Making? A Systematic Literature Review

    Negin Hajizadeh MD, MPH

    2016-07-01

    Full Text Available Background: Whether shared decision making (SDM has been evaluated for end-of-life (EOL decisions as compared to other forms of decision making has not been studied. Purpose: To summarize the evidence on SDM being associated with better outcomes for EOL decision making, as compared to other forms of decision making. Data Sources: PubMed, Web of Science, Cochrane Central Register of Controlled Trials, EMBASE, PsycINFO, and CINAHL databases were searched through April 2014. Study Selection: Studies were selected that evaluated SDM, compared to any other decision making style, for an EOL decision. Data Extraction: Components of SDM tested, comparators to SDM, EOL decision being assessed, and outcomes measured. Data Synthesis: Seven studies met the inclusion criteria (three experimental and four observational studies. Results were analyzed using narrative synthesis. All three experimental studies compared SDM interventions to usual care. The four observational studies compared SDM to doctor-controlled decision making, or reported the correlation between level of SDM and outcomes. Components of SDM specified in each study differed widely, but the component most frequently included was presenting information on the risks/benefits of treatment choices (five of seven studies. The outcome most frequently measured was communication, although with different measurement tools. Other outcomes included decisional conflict, trust, satisfaction, and “quality of dying.” Limitations: We could not analyze the strength of evidence for a given outcome due to heterogeneity in the outcomes reported and measurement tools. Conclusions: There is insufficient evidence supporting SDM being associated with improved outcomes for EOL decisions as opposed to other forms of decision making. Future studies should describe which components of SDM are being tested, outline the comparator decision making style, and use validated tools to measure outcomes.

  5. Self-Perceived End-of-Life Care Competencies of Health-Care Providers at a Large Academic Medical Center.

    Montagnini, Marcos; Smith, Heather M; Price, Deborah M; Ghosh, Bidisha; Strodtman, Linda

    2018-01-01

    In the United States, most deaths occur in hospitals, with approximately 25% of hospitalized patients having palliative care needs. Therefore, the provision of good end-of-life (EOL) care to these patients is a priority. However, research assessing staff preparedness for the provision of EOL care to hospitalized patients is lacking. To assess health-care professionals' self-perceived competencies regarding the provision of EOL care in hospitalized patients. Descriptive study of self-perceived EOL care competencies among health-care professionals. The study instrument (End-of-Life Questionnaire) contains 28 questions assessing knowledge, attitudes, and behaviors related to the provision of EOL care. Health-care professionals (nursing, medicine, social work, psychology, physical, occupational and respiratory therapist, and spiritual care) at a large academic medical center participated in the study. Means were calculated for each item, and comparisons of mean scores were conducted via t tests. Analysis of variance was used to identify differences among groups. A total of 1197 questionnaires was completed. The greatest self-perceived competency was in providing emotional support for patients/families, and the least self-perceived competency was in providing continuity of care. When compared to nurses, physicians had higher scores on EOL care attitudes, behaviors, and communication. Physicians and nurses had higher scores on most subscales than other health-care providers. Differences in self-perceived EOL care competencies were identified among disciplines, particularly between physicians and nurses. The results provide evidence for assessing health-care providers to identify their specific training needs before implementing educational programs on EOL care.

  6. Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia

    Mortier Freddy

    2008-02-01

    Full Text Available Abstract Background In this study we investigated (a to what extent physicians have experience with performing a range of end-of-life decisions (ELDs, (b if they have no experience with performing an ELD, would they be willing to do so under certain conditions and (c which background characteristics are associated with having experience with/or being willing to make such ELDs. Methods An anonymous questionnaire was sent to 16,486 physicians from specialities in which death is common: Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland. Results The response rate differed between countries (39–68%. The experience of foregoing life-sustaining treatment ranged between 37% and 86%: intensifying the alleviation of pain or other symptoms while taking into account possible hastening of death between 57% and 95%, and experience with deep sedation until death between 12% and 46%. Receiving a request for hastening death differed between 34% and 71%, and intentionally hastening death on the explicit request of a patient between 1% and 56%. Conclusion There are differences between countries in experiences with ELDs, in willingness to perform ELDs and in receiving requests for euthanasia or physician-assisted suicide. Foregoing treatment and intensifying alleviation of pain and symptoms are practiced and accepted by most physicians in all countries. Physicians with training in palliative care are more inclined to perform ELDs, as are those who attend to higher numbers of terminal patients. Thus, this seems not to be only a matter of opportunity, but also a matter of attitude.

  7. Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision-making among patients, family, and health care staff.

    Del Río, M I; Shand, B; Bonati, P; Palma, A; Maldonado, A; Taboada, P; Nervi, F

    2012-09-01

    Decrease in oral intake, weight loss, and muscular weakness in the last phases of a terminal illness, particularly in the context of the cachexia-anorexia syndrome, can be an important source of anxiety for the triad of patient, family, and health staff. The present literature review examines the emotional impact of reduced oral intake as well as perceptions and attitudes toward assisted nutrition and hydration for terminally ill patients(1) at the end of life, among patients, family, and health care staff. We have identified the ways in which emotional and cultural factors influence decision-making about assisted nutrition and hydration. Lack of information and misperceptions of medically assisted nutrition and hydration can play a predominant role in the decision to begin or suspend nutritional or hydration support. Our literature review reveals that these social, emotional, and clinical misperception elements should be considered in the decision-making processes to help the triad develop functional forms of care at this final stage of life. Copyright © 2011 John Wiley & Sons, Ltd. Copyright © 2011 John Wiley & Sons, Ltd.

  8. Approaches to end-of-life decision-making in the NICU: insights from Dostoevsky's The Grand Inquisitor.

    Paris, J J; Graham, N; Schreiber, M D; Goodwin, M

    2006-07-01

    For many parents stopping life-sustaining medical treatment on their dying infant is psychologically impossible. Dostoevsky's insights into human behavior, particularly the fact that individuals do not want the anxiety and guilt associated with responsibility for making difficult decisions, might change the way physicians approach parents for permission to withdraw life-prolonging medical interventions on dying infants.

  9. [Decision-making processes in nursing and activities at the end of life in intensive care–An international comparative study].

    Kohlen, Helen; McCarthy, Joan; Szylit Buosso, Regina; Gallagher, Ann; Andrews, Tom

    2015-12-01

    Intensive care units (ICUs) are traditionally settings that offer high technologically advanced treatment for those who are in critical situations due to an illness or accident. Questions regarding the withdrawal and withholding as well as the ending of life sustaining treatment are related to ethical dilemmas. Nurses’ decision-making processes and nursing activities in different countries are scarcely studied. Which end-of-life decision-making processes and activities that are performed by nurses can be identified and described? The objective is the identification of a nursing terrain regarding decision-making and activities in patient end-of-life care on the intensive care unit. Semi-structured interviews were conducted with 51 experienced nurses in university or hospital premises: 10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine. The study used grounded theory to inform data collection and analysis. The finding of the study is the identification of a dynamic process in which activities with a focus on cure shift to activities with a focus on end-of-life care. The core category that emerged was ’negotiated reorienting’: The shift of activities implies negotiations between nurses and physicians, relatives as well as with oneself. Moreover the process is characterized by a constant re-orientation that is induced by changing patient data and the realisation of the whole situation. Nurses’ core practices are ’consensus seeking’ and ’emotional holding’ (sub-categories). In all countries a nursing terrain of activities in end-of-life care could be identified and described. However, it is unclear whether nursing activities connected to relatives of the patient are dominant in such a way that relations to dying patients and respect for their autonomy are put into the background. A field study could give answers to this question possible.

  10. The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making.

    Sulmasy, Daniel P; Hughes, Mark T; Yenokyan, Gayane; Kub, Joan; Terry, Peter B; Astrow, Alan B; Johnson, Julie A; Ho, Grace; Nolan, Marie T

    2017-10-01

    Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. To test the effectiveness of an intervention to help surrogate decision makers. One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL); 163 completed baseline interviews and underwent the intervention. Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04; adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). TAILORED patients and surrogates who

  11. The Right Place at the Right Time: Medical Oncology Outpatients' Perceptions of Location of End-of-Life Care.

    Waller, Amy; Sanson-Fisher, Rob; Zdenkowski, Nicholas; Douglas, Charles; Hall, Alix; Walsh, Justin

    2018-01-01

    Background: Helping people achieve their preferred location of care is an important indicator of quality end-of-life (EOL) care. Using a sample of Australian medical oncology outpatients, this study examined (1) their preferred location of EOL care; (2) their perceived benefits and worries of receiving care in that location; (3) the percentage who had discussed preferences with their doctor and/or support person; and (4) whether they wanted their doctor to ask them where they wanted to die. Methods: Adults with a confirmed diagnosis of cancer were approached between September 2015 and January 2016 in the waiting room of an Australian oncology outpatient clinic. Consenting participants completed a home-based pen-and-paper survey indicating preferred location of care, perceived benefits and worries of that location, whether they had discussed preferences with their doctors, and whether they were willing to be asked about their preferences. Results: A total of 203 patients returned the survey (47% of those eligible). Less than half preferred to be cared for at home (47%), 34% preferred a hospice/palliative care unit, and 19% preferred the hospital. Common benefits and worries associated with locations included perceived burden on others, familiarity of environment, availability of expert medical care, symptom management, and likelihood of having wishes respected. More patients had discussed preferences with their support persons (41%) than doctors (7%). Most wanted a doctor to ask them about preferred location of care (87%) and thought it was important to die in the location of their choice (93%). Conclusions: Patients were willing to have clinicians to ask them where they wanted to die, although few had discussed their preferences with doctors. Although home was the most preferred location for many patients, the overall variation suggests that clinicians should adopt a systematic approach to eliciting patient preferences. Copyright © 2018 by the National

  12. Geriatric infrastructure, BRAC, and ecosystem service markets? End-of-life decisions for dams, roads, and offshore platforms (Invited)

    Doyle, M. W.

    2010-12-01

    the Missouri and Iowa Rivers for wildlife conservation areas. Programs that link offshore oil platform decommissioning to marine conservation areas are also notable examples of creative linkages between infrastructure and conservation efforts. For federal infrastructure, the forthcoming Water Resources Development Act (WRDA) should include a BRAC-like program. Faced with a number of aging military bases, the Department of Defense (DOD) began identifying installations it would rather close than maintain or modernize. Overcoming political hurdles was accomplished via the Base Realignment and Closure Commission (BRAC), a bi-partisan commission that buffered politicians by creating a slate of closures for Congress and the President to approve or scuttle in toto. From 1988-2005, BRACs closed > 125 military installations, saving > $50 billion. DOD advocated BRAC because it increased efficiency by focusing funding on those bases central to DODs mission, and removed base funding decisions from political influence. Regardless of the approach, society must develop approaches from which to base difficult end-of-life decisions for infrastructure. In most cases, removing obsolete infrastructure can allow focus on infrastructure that remains critical to society.

  13. End of Life Care

    ... Related Topics Choosing Wisely Join our e-newsletter! Aging & Health A to Z End of Life Care ... be used. Ice chips, popsicles, moist swabs, or artificial saliva can help prevent the mouth from becoming ...

  14. Japanese citizens' attitude toward end-of-life care and advance directives: A qualitative study for members of medical cooperatives.

    Hirayama, Yoko; Otani, Takashi; Matsushima, Masato

    2017-12-01

    Japanese citizens are interested in choosing their own end-of-life care, but few have created their own advance directive. This study examined changes among Japanese citizens' attitudes toward end-of-life care and advance directives and explored factors that affected these attitudes. We conducted five focus groups with 48 participants in 2009 and 2010. All participants were members of health cooperatives in Tokyo. We identified many barriers and reasons for creating and writing down advance directives. Experience caring for dying people and having a serious disease affected attitudes toward advance directives. Some participants changed their attitude toward end-of-life care by writing their own advance directive. When someone is writing advance directives, asking about his/her past experience of caring may be helpful. And learning about or filling out advance directives may help to break down resistance to using these documents.

  15. [End-of-life decisions and practices in critically ill patients in the cardiac intensive care unit. A nationwide survey].

    Schimmer, C; Hamouda, K; Oezkur, M; Sommer, S-P; Leistner, M; Leyh, R

    2016-03-01

    Ethical and medical criteria in the decision-making process of withholding or withdrawal of life support therapy in critically ill patients present a great challenge in intensive care medicine. The purpose of this work was to assess medical and ethical criteria that influence the decision-making process for changing the aim of therapy in critically ill cardiac surgery patients. A questionnaire was distributed to all German cardiac surgery centers (n = 79). All clinical directors, intensive care unit (ICU) consultants and ICU head nurses were asked to complete questionnaires (n = 237). In all, 86 of 237 (36.3 %) questionnaires were returned. Medical reasons which influence the decision-making process for changing the aim of therapy were cranial computed tomography (cCT) with poor prognosis (91.9 %), multi-organ failure (70.9 %), and failure of assist device therapy (69.8 %). Concerning ethical reasons, poor expected quality of life (48.8 %) and the presumed patient's wishes (40.7 %) were reported. There was a significant difference regarding the perception of the three different professional groups concerning medical and ethical criteria as well as the involvement in the decision-making process. In critically ill cardiac surgery patients, medical reasons which influence the decision-making process for changing the aim of therapy included cCT with poor prognosis, multi-organ failure, and failure of assist device therapy. Further studies are mandatory in order to be able to provide adequate answers to this difficult topic.

  16. [The medical deontological code and ethical questions regarding the end of life. A contribution to clarity from anesthesiologists and intensive care personnel].

    Orsi, L; Mazzon, D

    2000-01-01

    The Medical Deontological Code (MDC) discusses ethical questions regarding the end of life, which often require anesthetists and intensive care operators to take decisions regarding patients with terminal diseases in Article 14: Intensity of diagnostic-therapeutic procedures under heading IV (Diagnostic and therapeutic procedures) and Article 37: Caring for the terminally ill under heading V (Caring for the terminally ill). The original formulation of Article 37 prompted immediate dissent among numerous anesthetists-IC operators and bioethics experts who signed a petition addressed to the Permanent Commission for the Revision of the Deontological Code in which they asked of Article 37 and proposed a reformulation. In this paper the authors outline the arguments used to back up this requests and its broad acceptance by the Commission, as shown by the amendments made to Articles 37 and 38 of the MDC and the clarifications given un the Commentary to the MDC approved on 1/9/99. These amendments correct a deontological regulation whose original formulation appeared to be contradictory and inapplicable to the terminally ill patients. This matter clearly shows the importance of bioethical questions facing. Anesthetists and Intensive Care operators and underlines the need for reflection on these themes within the profession and a more active participation in the general debate on ethical and deontological aspects of the medical profession.

  17. Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review.

    Visser, Mieke; Deliens, Luc; Houttekier, Dirk

    2014-11-18

    Although many terminally ill people are admitted to an intensive care unit (ICU) at the end of life, their care is often inadequate because of poor communication by physicians and lack of patient- and family-centred care. The aim of this systematic literature review was to describe physician-related barriers to adequate communication within the team and with patients and families, as well as barriers to patient- and family-centred decision-making, towards the end of life in the ICU. We base our discussion and evaluation on the quality indicators for end-of-life care in the ICU developed by the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup. Four electronic databases (MEDLINE, Embase, CINAHL and PsycINFO) were searched, using controlled vocabulary and free text words, for potentially relevant records published between 2003 and 2013 in English or Dutch. Studies were included if the authors reported on physician-related and physician-reported barriers to adequate communication and decision-making. Barriers were categorized as being related to physicians' knowledge, physicians' attitudes or physicians' practice. Study quality was assessed using design-specific tools. Evidence for barriers was graded according to the quantity and quality of studies in which the barriers were reported. Of 2,191 potentially relevant records, 36 studies were withheld for data synthesis. We determined 90 barriers, of which 46 were related to physicians' attitudes, 24 to physicians' knowledge and 20 to physicians' practice. Stronger evidence was found for physicians' lack of communication training and skills, their attitudes towards death in the ICU, their focus on clinical parameters and their lack of confidence in their own judgment of their patient's true condition. We conclude that many physician-related barriers hinder adequate communication and shared decision-making in ICUs. Better physician education and palliative care guidelines are needed to enhance

  18. Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.

    Song, Mi-Kyung; Ward, Sandra E; Fine, Jason P; Hanson, Laura C; Lin, Feng-Chang; Hladik, Gerald A; Hamilton, Jill B; Bridgman, Jessica C

    2015-11-01

    Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β=-0.01; 95% CI, -0.12 to 0.10). 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β=-1.13; 95% CI, -2.23 to -0.03), depression (β=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β=-5.75; 95% CI, -10.9 to -0.64) than controls. Study was conducted in a single US region. SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes. Copyright © 2015 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

  19. [Management of an elderly patient in the emergency room at the end of life : A medical ethics challenge].

    Michels, G; Nies, R; Ortmann, S; Pfister, R; Salomon, F

    2018-04-01

    A 94-year-old patient with cardiogenic shock due to myocardial infarction was admitted via the emergency room. A coronary angiography and intensive care were requested. The need for care due to dementia was known. After case discussion in the interdisciplinary and multiprofessional treatment team, the decision for a palliative care concept in the form of symptom control was made in the emergency room, taking into account the patient's medical history, the current situation, and the presumed patient consent. The integration of medical ethics aspects and palliative medicine into "geriatric emergency medicine" will present a challenge in the future.

  20. Beyond cultural stereotyping: views on end-of-life decision making among religious and secular persons in the USA, Germany, and Israel.

    Schweda, Mark; Schicktanz, Silke; Raz, Aviad; Silvers, Anita

    2017-02-17

    End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. The paper is based on a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel (n = 82). Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. As the group discussions indicate, there are no clear-cut positions anchored in "nationality," "culture," or "religion." Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed.

  1. The reluctance to burden others as a value in end-of-life decision making: a source of inaccuracy in substituted judgment.

    Winter, Laraine; Parks, Susan M

    2012-03-01

    Most patients are decisionally incapacitated at the end of life, leaving final treatment decisions to proxies, whose substituted judgment is often inaccurate. We investigated the reluctance to burden others (RBO), a commonly cited patient value, as a possible source of proxy inaccuracy. In a sample of 202 elders and their proxies, elders responded to three burden-related questions and the Life-prolonging Treatment Preferences Questionnaire. Proxies used substituted judgment to respond to the same questions. Although RBO predicted treatment preferences for both elders and proxies, elders rated RBO significantly more important than did proxies. In addition, larger elder-proxy differences in RBO were associated with more inaccurate substituted judgment.

  2. Communication tools for end-of-life decision-making in the intensive care unit: a systematic review and meta-analysis.

    Oczkowski, Simon J W; Chung, Han-Oh; Hanvey, Louise; Mbuagbaw, Lawrence; You, John J

    2016-04-09

    For many patients admitted to the intensive care unit (ICU), preferences for end-of-life care are unknown, and clinicians and substitute decision-makers are required to make decisions about the goals of care on their behalf. We conducted a systematic review to determine the effect of structured communication tools for end-of-life decision-making, compared to usual care, upon the number of documented goals of care discussions, documented code status, and decisions to withdraw life-sustaining treatments, in adult patients admitted to the ICU. We searched multiple databases including MEDLINE, Embase, CINAHL, ERIC, and Cochrane from database inception until July 2014. Two reviewers independently screened articles, assessed eligibility, verified data extraction, and assessed risk of bias using the tool described by the Cochrane Collaboration and the Newcastle Ottawa Scale. Pooled estimates of effect (relative risk, standardized mean difference, or mean difference), were calculated where sufficient data existed. GRADE was used to evaluate the overall quality of evidence for each outcome. We screened 5785 abstracts and reviewed the full text of 424 articles, finding 168 eligible articles, including 19 studies in the ICU setting. The use of communication tools increased documentation of goals-of-care discussions (RR 3.47, 95% CI 1.55, 7.75, p = 0.020, very low-quality evidence), but did not have an effect on code status documentation (RR 1.03, 95% CI 0.96, 1.10, p = 0.540, low-quality evidence) or decisions to withdraw or withhold life-sustaining treatments (RR 0.98, 95% CI 0.89, 1.08, p = 0.70, low-quality evidence). The use of such tools was associated with a decrease in multiple measures of health care resource utilization, including duration of mechanical ventilation (MD -1.9 days, 95% CI -3.26, -0.54, p = 0.006, very low-quality evidence), length of ICU stay (MD -1.11 days, 95% CI -2.18, -0.03, p = 0.04, very low-quality evidence), and health care costs (SMD -0.32, 95

  3. Challenges in end-of-life communication.

    Galushko, Maren; Romotzky, Vanessa; Voltz, Raymond

    2012-09-01

    The purpose of this review is to give an overview of challenges that have been addressed in recent research in end-of-life communication. Diversity of difficulties that may occur in communication about end-of-life issues has been showed. The emotional quality of this communication requires special skills from professionals involved. Studies showed that physicians and medical students are often overstrained and avoid end-of-life discussions. Health professionals and patients are often ambivalent about end-of-life discussions. Nevertheless, professionals are expected to initiate these in an honest, needs-oriented way. Patient preferences are difficult to infer and have to be assessed explicitly and regularly. Studies showed that the emotional impact of end-of-life discussions can lead to a high burden or avoidance of professionals. Interdisciplinary, multi-professional work can support health professionals in end-of-life care but often structural barriers obstruct possible benefits. Health professionals need to initiate end-of-life communication in a sensitive way. Specific demands for health professionals in end-of-life communication are to differentiate own emotions and life events from those of patients and to deal with both adequately. Moreover, structural aspects can lead to difficulties between different specialties, professions and sectors, which can have a negative impact on adequate care for patient and relatives. Special efforts for improvement are needed.

  4. End-of-life decision making in nursing home residents with dementia and pneumonia: Dutch physicians' intentions regarding hastening death

    van der Steen, J.T.; van der Wal, G.; Mehr, D.R.; Ooms, M.E.; Ribbe, M.W.

    2005-01-01

    When patients with severe dementia become acutely ill, little is known about the extent to which physicians take actions intended to hasten death. For 143 nursing home patients with dementia who died of pneumonia after a decision not to treat with antibiotics, we asked Dutch facility-employed

  5. Pressure during decision making of continuous sedation in end-of-life situations in Dutch general practice

    Blanker, M.H.; Koerhuis-Roessink, M.; Swart, S.J.; Zuurmond, W.W.A.; van der Heide, A.; Perez, R.S.G.M.; Rietjens, J.A.C.

    2012-01-01

    Background: Little is known about pressure from patients or relatives on physician's decision making of continuous palliative sedation. We aim to describe experienced pressure by general practitioners (GPs) in cases of continuous sedation after the introduction of the Dutch practice guideline, using

  6. Pressure during decision making of continuous sedation in end-of-life situations in Dutch general practice

    Blanker Marco H

    2012-07-01

    Full Text Available Abstract Background Little is known about pressure from patients or relatives on physician’s decision making of continuous palliative sedation. We aim to describe experienced pressure by general practitioners (GPs in cases of continuous sedation after the introduction of the Dutch practice guideline, using a questionnaire survey. Methods A sample of 918 Dutch GPs were invited to fill out a questionnaire about their last patient under continuous sedation. Cases in which GPs experienced pressure from the patient, relatives or other persons were compared to those without pressure. Results 399 of 918 invite GPs (43% returned the questionnaire and 250 provided detailed information about their most recent case of continuous sedation. Forty-one GPs (16% indicated to have experienced pressure from the patient, relatives or colleagues. In GPs younger than 50, guideline knowledge was not related to experienced pressure, whereas in older GPs, 15% with and 36% without guideline knowledge reported pressure. GPs experienced pressure more often when patients had psychological symptoms (compared to physical symptoms only and when patients had a longer estimated life expectancy. A euthanasia request of the patient coincided with a higher prevalence of pressure for GPs without, but not for GPs with previous experience with euthanasia. GPs who experienced pressure had consulted a palliative consultation team more often than GPs who did not experience pressure. Conclusion One in six GPs felt pressure from patients or relatives to start sedation. This pressure was related to guideline knowledge, especially in older GPs, longer life expectancy and the presence of a euthanasia request, especially for GPs without previous experience of euthanasia.

  7. Pressure during decision making of continuous sedation in end-of-life situations in Dutch general practice

    2012-01-01

    Background Little is known about pressure from patients or relatives on physician’s decision making of continuous palliative sedation. We aim to describe experienced pressure by general practitioners (GPs) in cases of continuous sedation after the introduction of the Dutch practice guideline, using a questionnaire survey. Methods A sample of 918 Dutch GPs were invited to fill out a questionnaire about their last patient under continuous sedation. Cases in which GPs experienced pressure from the patient, relatives or other persons were compared to those without pressure. Results 399 of 918 invite GPs (43%) returned the questionnaire and 250 provided detailed information about their most recent case of continuous sedation. Forty-one GPs (16%) indicated to have experienced pressure from the patient, relatives or colleagues. In GPs younger than 50, guideline knowledge was not related to experienced pressure, whereas in older GPs, 15% with and 36% without guideline knowledge reported pressure. GPs experienced pressure more often when patients had psychological symptoms (compared to physical symptoms only) and when patients had a longer estimated life expectancy. A euthanasia request of the patient coincided with a higher prevalence of pressure for GPs without, but not for GPs with previous experience with euthanasia. GPs who experienced pressure had consulted a palliative consultation team more often than GPs who did not experience pressure. Conclusion One in six GPs felt pressure from patients or relatives to start sedation. This pressure was related to guideline knowledge, especially in older GPs, longer life expectancy and the presence of a euthanasia request, especially for GPs without previous experience of euthanasia. PMID:22759834

  8. More counselling for end-of-life decisions by GPs with own advance directives: A postal survey among German general practitioners.

    Schnakenberg, Rieke; Radbruch, Lukas; Kersting, Christine; Frank, Friederike; Wilm, Stefan; Becka, Denise; Weckbecker, Klaus; Bleckwenn, Markus; Just, Johannes M; Pentzek, Michael; Weltermann, Birgitta

    2018-12-01

    Although general practitioners (GPs) are among the preferred contact persons for discussing end-of-life issues including advance directives (ADs), there is little data on how GPs manage such consultations. This postal survey asked German GPs about their counselling for end-of-life decisions. In 2015, a two-sided questionnaire was mailed to 959 GPs. GPs were asked for details of their consultations on ADs: frequency, duration, template use, and whether they have own ADs. Statistical analysis evaluated physician characteristics associated with an above-average number of consultations on AD. The participation rate was 50.3% (n = 482), 70.5% of the GPs were male; the average age was 54 years. GPs had an average of 18 years of professional experience, and 61.4% serve more than 900 patients per three months. Most (96.9%) GPs perform consultations on living wills (LW) and/or powers of attorney (PA), mainly in selected patients (72.3%). More than 20 consultations each on LWs and PAs are performed by 60% and 50% of GPs, respectively. The estimated mean duration of consultations was 21 min for LWs and 16 min for PAs. Predefined templates were used in 72% of the GPs, 50% of GPs had their ADs. A statistical model showed that GPs with ADs and/or a qualification in palliative medicine were more likely to counsel ≥20 patients per year for each document. The study confirmed that nearly all German GPs surveyed provide counselling on ADs. Physicians with ADs counsel more frequently than those without such documents.

  9. Pharmacotherapy at the end-of-life.

    O'Mahony, Denis

    2011-07-01

    Older people reaching end-of-life status are particularly at risk from inter-related adverse effects of pharmacotherapy, including polypharmacy, inappropriate medications and adverse drug events. These adverse effects of pharmacotherapy may be highly detrimental, as well as highly expensive. End-of-life pharmacotherapy is sometimes perceived to be complex and challenging, probably unnecessarily. This relates in part to the poorly developed evidence base and lack of high-quality research in this area. In this article, we deal with some of the key issues relating to pharmacotherapy in end-of-life patients, namely (i) the guiding principles of drug selection, (ii) the main drugs and drug classes that are best avoided, (iii) the benefits of \\'oligopharmacy\\' (i.e. deliberate avoidance of polypharmacy) in end-of-life patients.

  10. Dilemas e dificuldades envolvendo decisões de final de vida e oferta de cuidados paliativos em pediatria Dilemmas and difficulties involving end-of-life decisions and palliative care in children

    Jefferson Pedro Piva

    2011-03-01

    'terminal disease' for articles published in recent years. The most relevant articles and those enrolling pediatric patients were selected and compared to previous authors' studies in this field. The current Brazilian Medical Ethics Code (2010 was analyzed regarding end-oflife practices and palliative care for terminal patients. Lack of knowledge, insufficient specific training, and legal concerns are the main reasons why end-of-life decisions in terminal children are based on medical opinion with scarce family participation. The current Brazilian Medical Ethics Code (2010 fully supports end-of-life decisions made consensually with active family participation. Honest dialogue with the family regarding diagnostic, prognostic, therapeutic and palliative care measures should be established gradually to identify the best strategy to meet the child's end-of-life needs. Treatment focused on the child's welfare combined with the family's participation is the basis for successful palliative care of children with terminal diseases.

  11. Physician Approaches to Conflict with Families Surrounding End-of-Life Decision-making in the Intensive Care Unit. A Qualitative Study.

    Mehter, Hashim M; McCannon, Jessica B; Clark, Jack A; Wiener, Renda Soylemez

    2018-02-01

    Families of critically ill patients are often asked to make difficult decisions to pursue, withhold, or withdraw aggressive care or resuscitative measures, exercising "substituted judgment" from the imagined standpoint of the patient. Conflict may arise between intensive care unit (ICU) physicians and family members regarding the optimal course of care. To characterize how ICU physicians approach and manage conflict with surrogates regarding end-of-life decision-making. Semistructured interviews were conducted with 18 critical care physicians from four academically affiliated hospitals. Interview transcripts were analyzed using methods of grounded theory. Physicians described strategies for engaging families to resolve conflict about end-of-life decision-making and tending to families' emotional health. Physicians commonly began by gauging family receptiveness to recommendations from the healthcare team. When faced with resistance to recommendations for less aggressive care, approaches ranged from deference to family wishes to various persuasive strategies designed to change families' minds, and some of those strategies may be counterproductive or harmful. The likelihood of deferring to family in the event of conflict was associated with the perceived sincerity of the family's "substituted judgment" and the ability to control patient pain and suffering. Physicians reported concern for the family's emotional needs and made efforts to alleviate the burden on families by assuming decision-making responsibility and expressing nonabandonment and commitment to the patient. Physicians were attentive to repairing damage to their relationship with the family in the aftermath of conflict. Finally, physicians described their own emotional responses to conflict, ranging from frustration and anxiety to satisfaction with successful resolution of conflict. Critical care physicians described a complex and multilayered approach to physician-family conflict. The reported strategies

  12. End-of-life decision making in respiratory failure. The therapeutic choices in chronic respiratory failure in a 7-item questionnaire

    Dagmar Elfriede Rinnenburger

    2012-01-01

    Full Text Available INTRODUCTION: The transition from paternalistic medicine to a healthcare culture centred on the patient's decision making autonomy presents problems of communication and understanding. Chronic respiratory failure challenges patients, their families and caregivers with important choices, such as invasive and non-invasive mechanical ventilation and tracheostomy, which, especially in the case of neuromuscular diseases, can significantly postpone the end of life. MATERIAL AND METHODS: A 7-item questionnaire was administered to 100 patients with advanced COPD, neuromuscular diseases and pulmonary fibrosis, all of them on oxygen therapy and receiving day-hospital treatment for respiratory failure. The objective was to find out whether or not patients, if faced with a deterioration of their health condition, would want to take part in the decision making process and, if so, how and with whom. RESULTS. Results showed that: 90% of patients wanted to be interviewed, 10% preferred not to be interviewed, 82% wanted to be regularly updated on their clinical situation, 75% wanted to be intubated, if necessary, and 56% would also agree to have a tracheostomy. These choices have been confirmed one year later, with 93% of respondents accepting the questionnaire and considering it useful. CONCLUSIONS: It is possible to conclude that a simple questionnaire can be a useful tool contributing to therapeutic decision making in respiratory failure.

  13. End-of-Life Decisions

    ... social supports as well as support for those caring for the person. Artificial Nutrition and Hydration What ... an ethics committee that can provide a neutral environment in which to mediate and resolve conflict. Can ...

  14. The Impact of Faith Beliefs on Perceptions of End-of-Life Care and Decision Making among African American Church Members.

    Johnson, Jerry; Hayden, Tara; True, Jennifer; Simkin, Daren; Colbert, Louis; Thompson, Beverly; Stewart, Denise; Martin, Latoya

    2016-02-01

    African Americans underuse palliative care and hospice services because of a combination of factors including faith beliefs. As the spiritual family for many African Americans, the church presents an opportunity to improve communication about palliative care and hospice and end-of-life (EOL) decision making. We conducted a focus group study to understand the cultural and spiritual perspectives that influence decisions about palliative care and hospice among African American church members who visit and support persons with life-limiting illnesses. Our specific aims were to elicit their perceptions, beliefs, and attitudes about: (1) the relation between faith beliefs and EOL care; (2) emotional and family influences on EOL decision making; (3) palliative care and hospice resources; and (4) opportunities to improve communication among lay persons and health professionals and within families. Seven focus groups using purposeful sampling. We partnered with two African American churches. Of 51 persons, 27 were deacons or deaconesses, 17 were members of health or bereavement ministries, and 7 were other members of the congregations. We found that faith beliefs of African Americans can support discussions about palliative care and hospice. Participants perceived that many of their congregants harbor beliefs, perceptions, and feelings about death and dying that were often not communicated to family members or to health providers. Among African Americans, faith beliefs, emotional issues, family dynamics, and insufficient knowledge of palliative care and hospice are intertwined and influence decision making about palliative care and hospice. Our findings confirm the influence of faith beliefs of African Americans on decisions about palliative care and hospice and demonstrate the opportunity to improve communication about palliative care and hospice and EOL through collaborations with the African American church.

  15. A Legal and Ethical Analysis of the Effects of Triggering Conditions on Surrogate Decision-Making in End-of-Life Care in the US.

    Clint Parker, J; Goldberg, Daniel S

    2016-03-01

    The central claim of this paper is that American states' use of so-called "triggering conditions" to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations (including epistemic difficulties), and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation.

  16. Euthanasia and Other Medical Decisions at the End of Life: Societal Control and Cultural Aspects

    H.M. Buiting (Hilde)

    2009-01-01

    textabstractDeath is a socially and culturally embedded phenomenon.1 It is inevitably understood and experienced within a complex web of cultural meanings that differ within and across countries. During the past century, acute death due to infectious diseases has to a great extent been replaced by

  17. Making Medical Decisions for a Loved One at the End of Life

    ... acponline.org/ethics Copyright © 2014 by the American College of Physicians. Permission granted to photocopy or print this material for non-profit educational uses. Written permission is required for electronic and all other uses. 190 N Independence Mall West Philadelphia, PA 19106–1572 215-351- ...

  18. End of Life: Suicide Grief

    Healthy Lifestyle End of life A loved one's suicide can be emotionally devastating. Use healthy coping strategies — ... Clinic Staff When a loved one dies by suicide, overwhelming emotions can leave you reeling. Your grief ...

  19. Online public reactions to fMRI communication with patients with disorders of consciousness: Quality of life, end-of-life decision making, and concerns with misdiagnosis.

    Chandler, Jennifer A; Sun, Jeffrey A; Racine, Eric

    2017-01-01

    Recently, the news media have reported on the discovery of covert awareness and the establishment of limited communication using a functional magnetic resonance imaging (fMRI) neuroimaging technique with several brain-injured patients thought to have been in a vegetative state. This discovery has raised many ethical, legal, and social questions related to quality of life, end-of-life decision making, diagnostic and prognostic accuracy in disorders of consciousness, resource allocation, and other issues. This project inquires into the public responses to these discoveries. We conducted a thematic analysis of online comments (n = 779) posted in response to 15 news articles and blog posts regarding the case of a Canadian patient diagnosed for 12 years as in a vegetative state, but who was reported in 2012 as having been able to communicate via fMRI. The online comments were coded using an iteratively refined codebook structured around 14 main themes. Among the most frequent public reactions revealed in the online comments were discussions of the quality of life of patients with disorders of consciousness, whether life-sustaining treatment should be withdrawn (and whether the fMRI communication technique should be used to ask patients about this), and misgivings about the accuracy of diagnosis in disorders of consciousness and brain death. These public perspectives are relevant to the obligations of clinicians, lawyers, and public policymakers to patients, families, and the public. Future work should consider how best to alleviate families' concerns as this type of research shakes their faith in diagnostic accuracy, to clarify the legal rules relating to advance directives in this context, and to address the manner in which public messaging might help to alleviate any indirect impact on confidence in the organ donation system.

  20. The role of the principle of double effect in ethics education at US medical schools and its potential impact on pain management at the end of life.

    Macauley, Robert

    2012-03-01

    Because opioids can suppress respiratory drive, the principle of double effect (PDE) has been used to justify their use for terminally ill patients. Recent studies, however, suggest that the risk of respiratory depression in typical end-of-life (EOL) situations may be overstated and that heightened concern for this rare occurrence can lead to inadequate treatment of pain. The purpose of this study is to examine the role of the PDE in medical school ethics education, with specific reference to its potential impact on pain management at EOL. After obtaining institutional review board approval, an electronic survey was sent to ethics educators at every allopathic medical school in the USA. One-third of ethics educators felt that opioids were 'likely' to cause significant respiratory depression that could hasten death. Educators' opinions of opioid effects did not influence their view of the relevance of the PDE, with approximately 70% deeming it relevant to EOL care. Only 15% of ethics educators believed that associating the PDE with opioid use might discourage clinicians from optimally treating pain, out of concern for respiratory depression. This study demonstrates that a significant minority of ethics educators believe, contrary to current evidence, that opioids are 'likely' to cause significant respiratory depression that could hasten death in terminally ill patients. Yet, many of those who do not feel this is likely still rely on the PDE to justify this possibility, potentially (and unknowingly) contributing to clinical misperceptions and underutilisation of opioids at EOL.

  1. Doctors' learning experiences in end-of-life care

    Fosse, Anette; Ruths, Sabine; Malterud, Kirsti

    2017-01-01

    death could even be welcomed. Through challenging dialogues dealing with family members’ hope and trust, they learnt how to adjust words and decisions according to family and patient’s life story. Interdisciplinary role models helped them balance uncertainty and competence in the intermediate position......Background: Doctors often find dialogues about death difficult. In Norway, 45% of deaths take place in nursing homes. Newly qualified medical doctors serve as house officers in nursing homes during internship. Little is known about how nursing homes can become useful sites for learning about end-of-life...... care. The aim of this study was to explore newly qualified doctors’ learning experiences with end-of-life care in nursing homes, especially focusing on dialogues about death. Methods: House officers in nursing homes (n = 16) participated in three focus group interviews. Interviews were audiotaped...

  2. Shared decision-making at the end of life: A focus group study exploring the perceptions and experiences of multi-disciplinary healthcare professionals working in the home setting.

    Brogan, Paula; Hasson, Felicity; McIlfatrick, Sonja

    2018-01-01

    Globally recommended in healthcare policy, Shared Decision-Making is also central to international policy promoting community palliative care. Yet realities of implementation by multi-disciplinary healthcare professionals who provide end-of-life care in the home are unclear. To explore multi-disciplinary healthcare professionals' perceptions and experiences of Shared Decision-Making at end of life in the home. Qualitative design using focus groups, transcribed verbatim and analysed thematically. A total of 43 participants, from multi-disciplinary community-based services in one region of the United Kingdom, were recruited. While the rhetoric of Shared Decision-Making was recognised, its implementation was impacted by several interconnecting factors, including (1) conceptual confusion regarding Shared Decision-Making, (2) uncertainty in the process and (3) organisational factors which impeded Shared Decision-Making. Multiple interacting factors influence implementation of Shared Decision-Making by professionals working in complex community settings at the end of life. Moving from rhetoric to reality requires future work exploring the realities of Shared Decision-Making practice at individual, process and systems levels.

  3. Questioning care at the end of life.

    Ruopp, Patricia; Good, Mary-Jo Delvecchio; Lakoma, Matthew; Gadmer, Nina M; Arnold, Robert M; Block, Susan D

    2005-06-01

    The goal of the larger study was to explore physicians' emotional responses to the death of their patients; this study analyzed a subset of physician transcripts to elucidate the construct of questioning care, which emerged from the larger study. To analyzes how physicians question care-expressing concern, unease, or uncertainty about treatment decisions and practices, errors, or adverse events-as they attend dying patients. Retrospective interview study of physicians caring for randomly selected deaths on the medical service of a major academic teaching hospital, using qualitative and quantitative measures. SETTING, SUBJECTS: 188 attendings, residents, and interns on the internal medical services of two academic medical centers were part of the larger study. A subsample of 75 physician narratives was selected for qualitative data analysis for this study. Qualitative measures included open-ended questions eliciting physicians' stories of the most recent and a most emotionally powerful patient death they have experienced. Grounded theory was used to analyze physician narratives. Quantitative instruments measured physician attitudes toward end-of-life care and responses to the most recent and most emotional patient death. Physicians question care more frequently in most emotional deaths (42%) than in most recent deaths (34%). Physicians question communication with patients and families and within medical teams, medical judgment and technique, standards of practice, and high-risk treatments, often assigning responsibility for medical management they perceive as inappropriate, futile, overly aggressive, or mistakes in judgment and technique. Responsibility ranges from the distal (the culture of medicine) to the proximal (personal). Frustration, guilt, and anger are more frequently expressed in these narratives when care is questioned. A typology of questioning care emerged from these physicians' narratives that parallels and reflects recent and classic research on

  4. Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients.

    Eneanya, Nwamaka D; Goff, Sarah L; Martinez, Talaya; Gutierrez, Natalie; Klingensmith, Jamie; Griffith, John L; Garvey, Casey; Kitsen, Jenny; Germain, Michael J; Marr, Lisa; Berzoff, Joan; Unruh, Mark; Cohen, Lewis M

    2015-06-12

    End-stage renal disease carries a prognosis similar to cancer yet only 20 % of end-stage renal disease patients are referred to hospice. Furthermore, conversations between dialysis team members and patients about end-of-life planning are uncommon. Lack of provider training about how to communicate prognostic data may contribute to the limited number of end-of-life care discussions that take place with this chronically ill population. In this study, we will test the Shared Decision-Making Renal Supportive Care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided. This multi-center study will deploy an intervention to improve end-of-life communication for hemodialysis patients who are at high risk of death in the ensuing six months. The intervention will be carried out as a prospective cohort with a retrospective cohort serving as the comparison group. Patients will be recruited from 16 dialysis units associated with two large academic centers in Springfield, Massachusetts and Albuquerque, New Mexico. Critical input from patient advisory boards, a stakeholder panel, and initial qualitative analysis of patient and caretaker experiences with advance care planning have informed the communication intervention. Rigorous communication training for hemodialysis social workers and providers will ensure that standardized study procedures are performed at each dialysis unit. Nephrologists and social workers will communicate prognosis and provide advance care planning in face-to-face encounters with patients and families using a social work-centered algorithm. Study outcomes including frequency and timing of hospice referrals, patient and caretaker satisfaction, quality of end-of-life discussions, and quality of death will be assessed over an 18 month period. The Shared Decision-Making Renal Supportive Care Communication intervention intends to improve discussions

  5. End of Life: An Overview

    Toner, Mary Ann; Shadden, Barbara B.

    2012-01-01

    Speech-language pathologists (SLPs) provide services to patients confronting the end of life (EOL) in a variety of settings. Instead of targeting improvement of health or sustaining life, EOL services focus primarily on quality of life. Although SLPs may not consider themselves core members of the health care team providing EOL services, the…

  6. End-of-life care: Indian perspective

    Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

    2013-01-01

    According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues. PMID:23858271

  7. Clinical review: Ethics and end-of-life care for critically ill patients in China

    Li, Li Bin

    2013-01-01

    Critical care medicine in China has made great advances in recent decades. This has led to an unavoidable issue: end-of-life ethics. With advances in medical technology and therapeutics allowing the seemingly limitless maintenance of life, the exact time of death of an individual patient is often determined by the decision to limit life support. How to care for patients at the end of life is not only a medical problem but also a social, ethical, and legal issue. A lot of factors, besides cult...

  8. Ethical issues in communication of diagnosis and end-of-life decision-making process in some of the Romanian Roma communities.

    Roman, Gabriel; Enache, Angela; Pârvu, Andrada; Gramma, Rodica; Moisa, Ştefana Maria; Dumitraş, Silvia; Ioan, Beatrice

    2013-08-01

    Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor-patient relationship. The study aims to explore the Roma's beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the "silence conspiracy" being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient's autonomy. We identified ethical dilemmas concerning autonomy, lack of patients' real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient's right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community.

  9. Is patient autonomy a critical determinant of quality of life in Korea? End-of-life decision making from the perspective of the patient.

    Mo, Ha Na; Shin, Dong Wook; Woo, Jae Ha; Choi, Jin Young; Kang, Jina; Baik, Young Ji; Huh, Yu Rae; Won, Joo Hee; Park, Myung Hee; Cho, Sang Hee

    2012-04-01

    We aimed to investigate the current practice of the involvement in decision making from the perspectives of terminal cancer patients, and to explore its possible associations with quality of life and quality of death in Korea. A multi-center, cross-sectional survey was performed on 93 terminal cancer patients. The questionnaire solicited their opinions regarding participation in treatment decision making, as well as quality of life (European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care) and quality of death (Good Death Inventory-Patient Version). A total of 78.5% of the patients had awareness of their terminal status, while 21.5% did not; 42.4% stated that they knew their condition and shared the decision-making responsibility with the medical staff and their family, while 21.7% made decisions on their own, and 35.9% left the decision-making responsibility to others. Patients who were aware of their illness and who actively participated in the decision making did not score higher than others on outcome measures of quality of life and quality of death. Moreover, the former even showed lower scores in some domains, including the 'physical and psychological comfort' (4.99 versus 5.61, p = 0.03), 'environmental comfort' (5.51 versus 6.04, p = 0.08), and 'emotional functioning' (55.70 versus 71.01, p = 0.06). in Korea, patient autonomy is not a universally accepted value from the perspectives of terminal cancer patients, nor is patient involvement in decision making always conducive to high quality of life or quality of death. The level of information and the pace at which it is provided should be tailored to each individual's ability, preference, need, and culture.

  10. End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided.

    Dupont-Thibodeau, Amélie; Barrington, Keith J; Farlow, Barbara; Janvier, Annie

    2014-02-01

    Interventions for extremely preterm infants bring up many ethical questions. Guidelines for intervention in the "periviable" period generally divide infants using predefined categories, such as "futile," "beneficial," and "gray zone" based on completed 7-day periods of gestation; however, such definitions often differ among countries. The ethical justification for using gestational age as the determination of the category boundaries is rarely discussed. Rational criteria used to make decisions regarding life-sustaining interventions must incorporate other important prognostic information. Precise guidelines based on imprecise data are not rational. Gestational age-based guidelines include an implicit judgment of what is deemed to be an unacceptably poor chance of "intact" survival but fail to explore the determination of acceptability. Furthermore, unclear definitions of severe disability, the difficulty, or impossibility, of accurately predicting outcome in the prenatal or immediate postnatal period make such simplistic formulae inappropriate. Similarly, if guidelines for intervention for the newborn are based on the "qualitative futility" of survival, it should be explicitly stated and justified according to established ethical guidelines. They should discuss whether newborn infants are morally different to older individuals or explain why thresholds recommended for intervention are different to recommendations for those in older persons. The aim should be to establish individualized goals of care with families while recognizing uncertainty, rather than acting on labels derived from gestational age categories alone. Copyright © 2014 Elsevier Inc. All rights reserved.

  11. Uncharted terrain: preference construction at the end of life.

    White, Mary T

    2014-01-01

    Respect for patients' self-determination has long been considered central to efforts to improve end-of-life care, yet efforts to promote advance directives or engage patients in end-of-life discussions are often unsuccessful. In this article, I contend that this is because the shared decision-making approach typically used in healthcare assumes patients' capacity to make rational choices, which is not always possible in end-of-life decisions. Drawing on decision theory, behavioral psychology, and related studies of end-of-life care, I present a growing body of evidence that suggests the novelty, complexity, and uncertainty of end-of-life circumstances make rational and stable preferences difficult to establish. I argue that an effective decision-making approach for the terminally ill must recognize and respond to the unique characteristics of end-of-life choices, including their nonrational dimensions. I conclude with a description of an initiative that appears to do so, resulting in increased patients' satisfaction. Copyright 2014 The Journal of Clinical Ethics. All rights reserved.

  12. Nurses' autonomy in end-of-life situations in intensive care units.

    Paganini, Maria Cristina; Bousso, Regina Szylit

    2015-11-01

    The intensive care unit environment focuses on interventions and support therapies that prolong life. The exercise by nurses of their autonomy impacts on perception of the role they assume in the multidisciplinary team and on their function in the intensive care unit context. There is much international research relating to nurses' involvement in end-of-life situations; however, there is a paucity of research in this area in Brazil. In the Brazilian medical scenario, life support limitation generated a certain reluctance of a legal nature, which has now become unjustifiable with the publication of a resolution by the Federal Medical Council. In Brazil, the lack of medical commitments to end-of-life care is evident. To understand the process by which nurses exercise autonomy in making end-of-life decisions in intensive care units. Symbolic Interactionism and Corbin and Strauss theory methodology were used for this study. Data were collected through single audio-recorded qualitative interviews with 14 critical care nurses. The comparative analysis of the data has permitted the understanding of the meaning of nurse's experience in exercising autonomy relating to end-of-life decision-making. Institutional ethics approval was obtained for data collection. Participants gave informed consent. All data were anonymized. The results revealed that nurses experience the need to exercise autonomy in intensive care units on a daily basis. Their experience expressed by the process of increase opportunities to exercise autonomy is conditioned by the pressure of the intensive care unit environment, in which nurses can grow, feel empowered, and exercise their autonomy or else can continuously depend on the decisions made by other professionals. Nurses exercise their autonomy through care. They work to create new spaces at the same time that they acquire new knowledge and make decisions. Because of the complexity of the end-of-life situation, nurses must adopt a proactive attitude

  13. Current health and preferences for life-prolonging treatments: an application of prospect theory to end-of-life decision making.

    Winter, Laraine; Parker, Barbara

    2007-10-01

    As a substantial body of research attests, the acceptability of life-prolonging treatment (e.g., tube feeding) tends to be greater among people in worse health than among healthier ones. Because a decision for or against a life-prolonging treatment represents a choice between two prospects-life (usually in poor health) and death-we propose a decision model, Prospect Theory, as a theoretical account of this phenomenon. Prospect Theory postulates that pairs of distant prospects are less distinguishable than pairs of closer ones. Thus, to healthy individuals, the prospects of death and life in poor health would both be remote, and therefore, the distinction between them, small. To less healthy individuals, however, the difference between the same pairs of prospects would appear greater, and therefore, life-prolonging treatment may be more acceptable. In a cross-sectional study of 304 community-dwelling people, aged 60 years and over in the Philadelphia area, USA, preferences for 4 life-prolonging treatments in 9 health scenarios were examined in relation to participants' current health, operationalized as number of deficits in physical functioning. As predicted, less healthy people expressed stronger preferences for all life-prolonging treatments compared with healthier ones, with differences greatest in the worse-health scenarios. Preferences also varied by health scenario, with any treatment preferred in the better health scenarios. Treatment preferences did not differ by type of treatment, depressed mood or any demographic characteristic except race, with African-Americans expressing stronger treatment preferences. Implications for advance care planning are discussed.

  14. Making "ethical safe space" in the translation of contested knowledge: the role of community debate in defining end-of-life decision ethics.

    Kaufert, Joseph; Schwartz, Karen; Wiebe, Rhonda; Derksen, Jim; Lutfiyya, Zana M; Richert, Dean

    2013-04-01

    The objectives of this article are, first, to document a unique process of research knowledge translation (KT), which the authors describe as the creation of "ethical safe space," and, second, to document the narratives of forum participants and describe their interaction in a dialogue about vulnerability, the authority of physicians, and the perspective of people with disabilities on the policy. Narrative data from qualitative interviews with individual key informants and focus groups were used to identify speakers with specific expertise on policy, disability perspectives, and bioethical issues, who were invited to participate in the Forum on Ethical Safe Space. The planning workgroup adopted a model for enabling representative participation in the public forum designed to reduce the impact of physical, sensory, financial, language, and professional status barriers. Using the transcripts and keynote speakers' printed texts, primary themes and patterns of interaction were identified reflecting the alternative perspectives. Through the development of a workshop on ethical, legal, and disability-related implications of professional policy guidelines developed by the College of Physicians and Surgeons of Manitoba, we provided a qualitative analysis of the discourse involving experts and disability community members supporting alternative positions on the impact of the policy statement, and discuss ethical, legal, and disability rights issues identified in the public debate. Contested policy and ethical frameworks for making decisions about withdrawing and withholding life supporting treatment may influence both the perspectives of palliative care providers and patients referred to palliative care facilities. An innovative model for KT using a public forum that enabled stakeholders with conflicting perspectives to engage with ethical and professional policy issues asserting the physician's authority in contested decisions involving withdrawing or withholding life

  15. Advanced Cancer and End-of-Life Preferences: Curative Intent Surgery Versus Noncurative Intent Treatment.

    Schubart, Jane R; Green, Michael J; Van Scoy, Lauren J; Lehman, Erik; Farace, Elana; Gusani, Niraj J; Levi, Benjamin H

    2015-12-01

    People with cancer face complex medical decisions, including whether to receive life-sustaining treatments at the end of life. It is not unusual for clinicians to make assumptions about patients' wishes based on whether they had previously chosen to pursue curative treatment. We hypothesized that cancer patients who initially underwent curative intent surgery (CIS) would prefer more aggressive end-of-life treatments compared to patients whose treatment was noncurative intent (non-CIT). This study was a retrospective review of data from a large, randomized controlled trial examining the use of an online decision aid for advance care planning, "Making Your Wishes Known" (MYWK), with patients who had advanced cancer. We reviewed patients' medical records to determine which patients underwent CIS versus non-CIT. In the parent trial, conducted at an academic medical center (2007-2012), 200 patients were enrolled with stage IV malignancy or other poor prognosis cancer. Patients' preferences for aggressive treatment were measured in two ways: using patient-selected General Wishes statements generated by the decision aid and patient-selected wishes for specific treatments under various hypothetical clinical scenarios (Specific Wishes). We evaluated 79 patients. Of these, 48 had undergone initial CIS and 31 had non-CIT. Cancer patients who initially underwent CIS did not prefer more aggressive end-of-life treatments compared to patients whose treatment was non-CIT. Clinicians should avoid assumptions about patients' preferences for life-sustaining treatment based on their prior choices for aggressive treatment.

  16. The trajectory of experience of critical care nurses in providing end-of-life care: A qualitative descriptive study.

    Ong, Keh Kiong; Ting, Kit Cheng; Chow, Yeow Leng

    2018-01-01

    To understand the perceptions of critical care nurses towards providing end-of-life care. There has been an increasing interest in end-of-life care in the critical care setting. In Singapore, approximately half of deaths in the hospital occur during critical care. While nurses are well positioned to provide end-of-life care to patients and their family members, they faced barriers to providing end-of-life care. Also, providing end-of-life care has profound positive and negative psychological effects on nurses, with the latter being more prominent. Qualitative descriptive design. Data collection was performed in a medical intensive care unit of a public tertiary hospital in Singapore. Ten registered nurses were purposively sampled and interviewed individually using a semi-structured interview guide. A codebook was developed to guide coding, and data were thematically analysed. Rigour was maintained. Nurses went through a trajectory of experience. They experienced the culture of care and developed dissatisfaction with it. The tension shaped their perception and meaning of life and death, and they developed mechanisms to reach resolution. This study provides insight on nurses' perception as a trajectory of experience and raised several implications on clinical practice, policy and research. There is a need to alleviate the tension nurses face and to facilitate coming to terms with the tension by improving the culture of care and supporting nurses. Nurses could be involved more in decision-making and empowered to start end-of-life care conversations within the team and with family members. Communication with family members and between nurses and doctors could be improved. Support for nurses providing end-of-life care could be enhanced through promoting social networks, education and bereavement support. Further research is needed to explore ways to support and empower nurses to provide end-of-life care in critical care. © 2017 John Wiley & Sons Ltd.

  17. Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States.

    Gemma Clarke

    Full Text Available There is continuing public debate about treatment preferences at the end of life, and the acceptability and legal status of treatments that sustain or end life. However, most surveys use binary yes/no measures, and little is known about preferences in neurological disease when decision-making capacity is lost, as most studies focus on cancer. This study investigates changes in public preferences for care towards the end of life, with a focus on measures to sustain or end life.Large-scale international public opinion surveys using a six-stage patient vignette, respondents chose a level of intervention for each stage as health and decision-making capacity deteriorated. Cross-sectional representative samples of the general public in Great Britain and the USA (N = 2016. Primary outcome measure: changes in respondents' preferences for care, measured on a four-point scale designed before data collection. The scale ranged from: maintaining life at all costs; to intervention with agreement; to no intervention; to measures for ending life.There were no significant differences between GB and USA. Preference for measures to sustain life at all costs peaked at short-term memory loss (30.2%, n = 610. Respondents selecting 'measures to help me die peacefully' increased from 3.9% to 37.0% as the condition deteriorated, with the largest increase occurring when decision-making capacity was lost (10.3% to 23.0%. Predictors of choosing 'measures to help me die peacefully' at any stage were: previous personal experience (OR = 1.34, p<0.010, and older age (OR = 1.09 per decade, p<0.010. Negative predictors: living with children (OR = 0.72, p<0.010 and being of "black" race/ethnicity (OR = 0.45, p<0.001.Public opinion was uniform between GB and USA, but markedly heterogeneous. Despite contemporaneous capacitous consent providing an essential legal safeguard in most jurisdictions, there was a high prevalence of preference for "measures to end my life peacefully" when

  18. End-of-Life Issues in the United States after Terri Schiavo: Implications for Social Work Practice

    Darrel Montero

    2011-09-01

    Full Text Available The very public death of Terri Schiavo in 2005 alerted Americans to what is a growing ethical, medical, and social crisis: the status of end-of-life issues and decisions in the United States. Currently, Oregon is the only state to give terminally ill patients the right to end their lives, with physicians’ help, if they so choose. Public opinion data from 1977 to the present show that Americans support greater rights for individuals facing end-of-life decisions--up to and including physician-assisted suicide and euthanasia. This paper considers the status of end-of-life issues in the United States after Terri Schiavo’s death and examines the opportunities for advocacy by social workers who serve clients and families encountering this complex and controversial issue.

  19. Management of Heart Failure in Patients Nearing the End of Life-There is So Much More To Do.

    LeMond, Lisa; Goodlin, Sarah J

    2015-04-01

    As the population of patients living with heart failure increases, the number of patients who will die with and from heart failure increases as well. End-of-life care in patients with heart failure is an additive process, whereby therapies to treat symptoms not alleviated by guideline-based medical therapy are integrated into the care of these individuals. This review focuses on providing clinicians with a basic framework for administration of end-of-life care in patients with heart failure, specifically focusing on decision-making, symptom management and functional management.

  20. Symptomatic Control in End-of-Life Patients

    Mariana Alves

    2017-01-01

    Full Text Available End-of-life patients present a variety of symptoms that cause suffering for them and their respective families. Health professionals throughout their university, internship and medical careers are ill-prepared to manage and improve the quality of life of these patients. This article aims to provide basic skills in the symptomatic management of end-of-life patients, focusing in particular on the control of pain, dyspnoea, fatigue, nausea, vomiting and anorexia. It also aims to draw attention to basic concepts of control concerning refractory symptoms and palliative sedation.

  1. [Team Collaboration in Home Medical Care to Support Patients at the End-of-Life - Review of Service Personnel Meeting on Discharge Day].

    Ogiwara, Miyoko; Irino, Hiromi; Yamaoka, Keita; Fujimaki, Yoko; Watanabe, Mutsuko; Yamamoto, Takeshi; Hirohara, Masayoshi; Kushida, Kazuki

    2018-03-01

    Due to the rising number of patients at the terminal stage or with high dependence on medical care, the cooperation of 2 teams, the hospital discharge support team and the home support team, has become very important. The recent spread of the Internet has enabled both patients and their families who have chosen home care to obtain a wide range of information about home services, as well as diseases, and form a picture of what will happen. However, there are actually many cases in which patients and families find that things are not as they imagined, and they are uneasy and unsure of what to do. Here, we report a case in which the mismatch between the patient's and family's expectations created an unsatisfactory care situation.

  2. A model for emergency department end-of-life communications after acute devastating events--part II: moving from resuscitative to end-of-life or palliative treatment.

    Limehouse, Walter E; Feeser, V Ramana; Bookman, Kelly J; Derse, Arthur

    2012-11-01

    The model for emergency department (ED) end-of-life communications after acute devastating events addresses decision-making capacity, surrogates, and advance directives, including legal definitions and application of these steps. Part II concerns communications moving from resuscitative to palliative and end-of-life treatments. After completing the steps involved in determining decision-making, emergency physicians (EPs) should consider starting palliative measures versus continuing resuscitative treatment. As communications related to these end-of-life decisions increasingly fall within the scope of emergency medicine (EM) practice, we need to become educated about and comfortable with them. © 2012 by the Society for Academic Emergency Medicine.

  3. Decision conflict and regret among surrogate decision makers in the medical intensive care unit.

    Miller, Jesse J; Morris, Peter; Files, D Clark; Gower, Emily; Young, Michael

    2016-04-01

    Family members of critically ill patients in the intensive care unit face significant morbidity. It may be the decision-making process that plays a significant role in the psychological morbidity associated with being a surrogate in the ICU. We hypothesize that family members facing end-of-life decisions will have more decisional conflict and decisional regret than those facing non-end-of-life decisions. We enrolled a sample of adult patients and their surrogates in a tertiary care, academic medical intensive care unit. We queried the surrogates regarding decisions they had made on behalf of the patient and assessed decision conflict. We then contacted the family member again to assess decision regret. Forty (95%) of 42 surrogates were able to identify at least 1 decision they had made on behalf of the patient. End-of-life decisions (defined as do not resuscitate [DNR]/do not intubate [DNI] or continuation of life support) accounted for 19 of 40 decisions (47.5%). Overall, the average Decision Conflict Scale (DCS) score was 21.9 of 100 (range 0-100, with 0 being little decisional conflict and 100 being great decisional conflict). The average DCS score for families facing end-of-life decisions was 25.5 compared with 18.7 for all other decisions. Those facing end-of-life decisions scored higher on the uncertainty subscale (subset of DCS questions that indicates level of certainty regarding decision) with a mean score of 43.4 compared with all other decisions with a mean score of 27.0. Overall, very few surrogates experienced decisional regret with an average DRS score of 13.4 of 100. Nearly all surrogates enrolled were faced with decision-making responsibilities on behalf of his or her critically ill family member. In our small pilot study, we found more decisional conflict in those surrogates facing end-of-life decisions, specifically on the subset of questions dealing with uncertainty. Surrogates report low levels of decisional regret. Copyright © 2015 Elsevier

  4. [Conscience clause in end-of-life care.

    De Panfilis, Ludovica; Cattaneo, Daniela; Cola, Luisanna; Gasparini, Maddalena; Porteri, Corinna; Tarquini, Daniela; Tiezzi, Alessandro; Veronese, Simone; Zullo, Silvia; Pucci, Eugenio

    2017-05-01

    The article proposes a critical reflection on issues that appeal to the conscience clause as part of end of life care can produce and what can guarantee freedom of conscience, self-determination of those involved and respect for the dignity of the sick person. After a philosophical and normative analysis, the article is organized on the basis of two important documents for discussion: a position paper of Società Italiana di Anestesia Analgesia Rianimazione e Terapia Intensiva (SIAARTI) signed by several scientific societies "Grandi insufficienze d'organo end stage: cure intensive o cure palliative?" and the Design of Law currently being debated "Norme in materia di consenso informato e di disposizioni anticipate di trattamento". In particular, the conscience clause has been discussed in the light of advance care planning (ACP), which represents the instrument to guarantee the shared planning of care and the shared-decision making. In this context, recourse to the clause of conscience brings out critical ethical and deontological issues that the article discusses, using the position paper SIAARTI and the text of law currently being debated, both built on the assumptions of a shared care relationship, where patient has a key-role in medical decisions.

  5. Nurses' care practices at the end of life in intensive care units in Bahrain.

    O'Neill, Catherine S; Yaqoob, Maryam; Faraj, Sumaya; O'Neill, Carla L

    2017-12-01

    The process of dying in intensive care units is complex as the technological environment shapes clinical decisions. Decisions at the end of life require the involvement of patient, families and healthcare professionals. The degree of involvement can vary depending on the professional and social culture of the unit. Nurses have an important role to play in caring for dying patients and their families; however, their knowledge is not always sought. This study explored nurses' care practices at the end of life, with the objective of describing and identifying end of life care practices that nurses contribute to, with an emphasis on culture, religious experiences and professional identity. Research Design and context: Grounded theory was used. In all, 10 nurses from intensive care unit in two large hospitals in Bahrain were participated. Ethical Considerations: Approval to carry out the research was given by the Research Ethics Committee of the host institution, and the two hospitals. A core category, Death Avoidance Talk, was emerged. This was supported by two major categories: (1) order-oriented care and (2) signalling death and care shifting. Death talk was avoided by the nurses, doctors and family members. When a decision was made by the medical team that a patient was not to be resuscitated, the nurses took this as a sign that death was imminent. This led to a process of signalling death to family and of shifting care to family members. Despite the avoidance of death talk and nurses' lack of professional autonomy, they created awareness that death was imminent to family members and ensured that end of life care was given in a culturally sensitive manner and aligned to Islamic values.

  6. Physician perspectives on legal processes for resolving end-of-life disputes.

    Chidwick, Paula; Sibbald, Robert

    2011-01-01

    In order to understand how to effectively approach end-of-life disputes, this study surveyed physicians' attitudes towards one process for resolving end-of-life disputes, namely, the Consent and Capacity Board of Ontario. In this case, the process involved examining interpretation of best interests between substitute decision-makers and medical teams. Physicians who made "Form G" applications to the Consent and Capacity Board of Ontario that resulted in a decision posted on the open-access database, Canadian Legal Information Institute (CanLii), were identified and surveyed. This purposive sample led to 13 invitations to participate and 12 interviews (92% response rate). Interviews were conducted using a prescribed interview guide. No barriers to the Consent and Capacity Board process were reported. Applications were made when physicians reached an impasse with the family and further treatment was perceived to be "unethical." The most significant challenge reported was the delay when appeals were launched. Appeals extended the process for an indefinite period of time making it so lengthy it negated any perceived benefits of the process. Benefits included that a neutral third party, namely the Consent and Capacity Board, was able to assess best interests. Also, when decisions were timely, further harm to the patient was minimized. Physicians reported this particular approach, namely the Consent and Capacity Board has a mechanism that is worthwhile, patient centred, process oriented, orderly and efficient for resolving end-of-life disputes and, in particular, determining best interests. However, unless the appeal process can be adjusted to respond to the ICU context there is a risk of not serving the best interest of patients. Physicians would recommend framing end-of-life treatment plans in the positive instead of negative, for example, propose palliative care and no escalation of treatment as opposed to withdrawal.

  7. [Plato's philosophy and the bioethical debate on the end of life: intersections in public health].

    Siqueira-Batista, Rodrigo; Schramm, Fermin Roland

    2004-01-01

    This article discusses bioethical aspects of medical futility, focusing on some of its intersections in public health. Starting from a demarcation of finitude in the core of the philosophical and bioethical debate on the end of life, we confront the contemporary criticism regarding medical futility with the ideas of Plato (427-347 B.C.), a philosopher who proposed significant considerations on numerous features of the medicine of his time. We thus explore novel theoretic references to guide the disputes related to this essential problem, the implications of which are decisive to health and life.

  8. Clinical review: Ethics and end-of-life care for critically ill patients in China.

    Li, Li Bin

    2013-12-04

    Critical care medicine in China has made great advances in recent decades. This has led to an unavoidable issue: end-of-life ethics. With advances in medical technology and therapeutics allowing the seemingly limitless maintenance of life, the exact time of death of an individual patient is often determined by the decision to limit life support. How to care for patients at the end of life is not only a medical problem but also a social, ethical, and legal issue. A lot of factors, besides culture, come into play in determining a person's ethical attitudes or behaviors, such as experience, education, religion, individual attributes, and economic considerations. Chinese doctors face ethical problems similar to those of their Western counterparts; however, since Chinese society is different from that of Western countries in cultural traditions, customs, religious beliefs, and ethnic backgrounds, there is a great difference between China and the Western world in regard to ethics at the end of life, and there is also a huge controversy within China.

  9. End-of-life care and mental illness: a model for community psychiatry and beyond.

    Candilis, Philip J; Foti, Mary Ellen G; Holzer, Jacob C

    2004-02-01

    End-of-life care is often influenced by the stereotyping of patients by age, diagnosis, or cultural identity. Two common stereotypes arise from the presumed incompetence of many patients to contribute to end-of-life decisions, and the fear that the discussions themselves will be de-stabilizing. We present a model for end-of-life discussions that combines competence assessment with healthcare preferences in a psychiatric population that faces identical stereotypes. The model, which draws on clinical research in competence and suicide risk assessment, has important implications for all patients in the community who are marginalized or stereotyped during discussions of end-of-life treatment.

  10. ["Dignity" at the end of life: ethical and deontologic reflections].

    Mazzon, Davide

    2015-12-01

    Bioethical reflection is often raised to qualify medical treatment in relation to the concept of "dignity" of the human being. In philosophy, the concept of human dignity is used to refer to the intrinsic value of every human being but it has been framed in many different ways depending on the theoretical matrix we refer to. According to Christian principles, the dignity of human beings resides on their being created in the image and likeness of God: hence, the holiness of life for the believer and the condemnation of all means of action intended to anticipate death from suicide to euthanasia. On the contrary, according to the liberal tradition, human dignity is especially expressed in the autonomy of every human being. The Italian and the German Constitutions recall the value of human dignity. In the article 32 of the Italian Constitution, the concept of dignity is taken into account when stating the autonomy of the individual decision-making about health treatment. This is confirmed by the Code of Medical Ethics (2014): the right to self-determination and the right of patients to decide for themselves in accordance with their own life plans, are at the core of the concept of "human dignity". For this reason, doctors should support and encourage the full right of every patient to be considered as an autonomous person until the end of life, affirming his dignity. The acronym ABCD (airway, breathing, circulation, drugs) synthetises the essentials of intensive care procedures in life-threatening events. The same acronym should guide our behavior in promoting dignity in clinical settings. Attitude: moving away from our certainties, to better understand the real nature of the sick person we are approaching. Behavior: always be inspired by kindness and respect. Compassion, that is, deep awareness of the suffering, coupled with the desire to bring relief. Dialogue, being open to know the human being "behind" disease. This approach, developed by Chochinov and called

  11. Stealing on insensibly: end of life politics in the United States.

    Brown, Lawrence D

    2012-10-01

    Because the United States often seems (and seems eager to present itself as) the home of the technological imperative and of determination to brand all challenges to it in end-of-life care as a descent into death panels, the prospects look unpromising for progress in US public policies that would expand the range of choices of medical treatments available to individuals preparing for death. Beneath this obdurate and intermittently hysterical surface, however, the diffusion across US states and communities of living wills, advanced directives, palliative care, hospice services and debates about assisted suicide is gradually strengthening not so much 'personal autonomy' as the authority, cultural and formal, of individuals and their loved ones not merely to shape but to lead the inevitably 'social' conversations on which decisions about care at the end of life depend. In short, the nation appears to be (in terms taken from John Donne's mediations on death) 'stealing on insensibly'--making incremental progress toward the replacement of clinical and other types of dogma with end-of-life options that honor the preferences of the dying.

  12. Emotional Numbness Modifies the Effect of End-of-Life Discussions on End-of-Life Care

    Maciejewski, Paul K.; Prigerson, Holly G.

    2012-01-01

    Context Overall, end-of-life (EOL) discussions are unrelated to psychological distress and associated with lower rates of aggressive care near death. Nevertheless, patients who report they feel emotionally numb about their illness might encounter difficulties cognitively processing an EOL discussion. Objectives We hypothesized that emotional numbness would modify the influence of EOL discussions on the receipt of less aggressive EOL care. Methods Data were derived from structured interviews with 290 participants in the federally-funded Coping with Cancer Study, a multisite, prospective cohort study of advanced cancer patients followed through their death. Patients’ reports of EOL discussions with their physician and emotional numbness were assessed a median of 4.6 months before death. Information about aggressive EOL care (i.e., ventilation, resuscitation in the last week of life, death in the Intensive Care Unit) was obtained from postmortem caregiver interviews and medical charts. Main and interactive effects of EOL discussions and emotional numbness on aggressive EOL care, adjusting for potential confounds, were evaluated using multiple logistic regression. Results The likelihood of aggressive EOL care associated with having EOL discussions increased by a factor of nine (adjusted odds ratio=9.02, 95% confidence interval 1.37, 59.6, P=0.022) for every unit increase in a patient’s emotional numbness score. Conclusion Emotional numbness diminishes a patient’s capacity to benefit from EOL discussions. EOL decision making may be more effective if clinical communications with emotionally numb patients are avoided. PMID:22926093

  13. REUSE OF AUTOMOTIVE COMPONENTS FROM DISMANTLED END OF LIFE VEHICLES

    Piotr NOWAKOWSKI

    2013-12-01

    Full Text Available The problem of recycling end of life automotive vehicles is serious worldwide. It is one of the most important streams of waste in developed countries. It has big importance as recycling potential of raw materials content in automotive vehicles is valuable. Different parts and assemblies after dismantling can also be reused in vehicles where replacement of specific component is necessary. Reuse of the components should be taken into consideration in selecting the vehicles dismantling strategy. It also complies with European Union policy concerning end of life vehicles (ELV. In the paper it is presented systematic approach to dismantling strategies including disassembly oriented on further reuse of components. It is focused on decision making and possible benefits calculation from economic and environmental point of view.

  14. Homeless Individuals Approaching the End of Life: Symptoms and Attitudes.

    Tobey, Matthew; Manasson, Julia; Decarlo, Kristen; Ciraldo-Maryniuk, Katrina; Gaeta, Jessie M; Wilson, Erica

    2017-04-01

    Over a million individuals in the United States experience homelessness annually and homeless individuals die at a higher rate than domiciled peers. Homeless individuals often have unique experiences at the end of life (EOL). This study examined the symptoms experienced by homeless individuals nearing the EOL and explored social background, attitudes, and experiences. Investigators conducted surveys of homeless individuals approaching the EOL at a medical respite home. Eligibility required a serious medical condition and for the patient's medical provider to answer "no" to the question "Would you be surprised if this patient were not alive in one year?" Interviews explored symptoms using the Memorial Symptom Assessment Survey. Symptoms were compared with those of relevant comparator groups in other studies. Participants (n = 20) were young to face the EOL (median age = 58) and suffered high rates of substance use disorders (n = 18; 90%) and psychiatric diagnoses (n = 16; 80%). Symptom frequency was high, especially as regarded pain and psychological symptoms. Previous experience with death among family and peers was universal (n = 20; 100%). Mistrust of others' decisions about the EOL was common, as was concern about receiving too little (n = 11; 55%) or too much (n = 8; 40%) care at the EOL. The frequency of symptoms was higher than in three comparator studies and those studies' subgroups (P Homeless individuals may experience a high frequency of pain and other symptoms as they approach the EOL. Care for such individuals may require a tailored approach. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  15. Medical decision making

    Stiggelbout, A.M.; Vries, M. de; Scherer, L.; Keren, G.; Wu, G.

    2016-01-01

    This chapter presents an overview of the field of medical decision making. It distinguishes the levels of decision making seen in health-care practice and shows how research in judgment and decision making support or improve decision making. Most of the research has been done at the micro level,

  16. Matters of spirituality at the end of life in the pediatric intensive care unit.

    Robinson, Mary R; Thiel, Mary Martha; Backus, Meghan M; Meyer, Elaine C

    2006-09-01

    Our objective with this study was to identify the nature and the role of spirituality from the parents' perspective at the end of life in the PICU and to discern clinical implications. A qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires was conducted at 3 PICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after the withdrawal of life-sustaining therapies participated. Overall, spiritual/religious themes were included in the responses of 73% (41 of 56) of parents to questions about what had been most helpful to them and what advice they would offer to others at the end of life. Four explicitly spiritual/religious themes emerged: prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death. Parents also identified several implicitly spiritual/religious themes, including insight and wisdom; reliance on values; and virtues such as hope, trust, and love. Many parents drew on and relied on their spirituality to guide them in end-of-life decision-making, to make meaning of the loss, and to sustain them emotionally. Despite the dominance of technology and medical discourse in the ICU, many parents experienced their child's end of life as a spiritual journey. Staff members, hospital chaplains, and community clergy are encouraged to be explicit in their hospitality to parents' spirituality and religious faith, to foster a culture of acceptance and integration of spiritual perspectives, and to work collaboratively to deliver spiritual care.

  17. Doctors' learning experiences in end-of-life care - a focus group study from nursing homes.

    Fosse, Anette; Ruths, Sabine; Malterud, Kirsti; Schaufel, Margrethe Aase

    2017-01-31

    Doctors often find dialogues about death difficult. In Norway, 45% of deaths take place in nursing homes. Newly qualified medical doctors serve as house officers in nursing homes during internship. Little is known about how nursing homes can become useful sites for learning about end-of-life care. The aim of this study was to explore newly qualified doctors' learning experiences with end-of-life care in nursing homes, especially focusing on dialogues about death. House officers in nursing homes (n = 16) participated in three focus group interviews. Interviews were audiotaped and transcribed verbatim. Data were analysed with systematic text condensation. Lave & Wenger's theory about situated learning was used to support interpretations, focusing on how the newly qualified doctors gained knowledge of end-of-life care through participation in the nursing home's community of practice. Newly qualified doctors explained how nursing home staff's attitudes taught them how calmness and acceptance could be more appropriate than heroic action when death was imminent. Shifting focus from disease treatment to symptom relief was demanding, yet participants comprehended situations where death could even be welcomed. Through challenging dialogues dealing with family members' hope and trust, they learnt how to adjust words and decisions according to family and patient's life story. Interdisciplinary role models helped them balance uncertainty and competence in the intermediate position of being in charge while also needing surveillance. There is a considerable potential for training doctors in EOL care in nursing homes, which can be developed and integrated in medical education. This practice based learning arena offers newly qualified doctors close interaction with patients, relatives and nurses, teaching them to perform difficult dialogues, individualize medical decisions and balance their professional role in an interdisciplinary setting.

  18. Artificial Nutrition (Food) and Hydration (Fluids) at the End of Life

    Artificial Nutrition (Food) and Hydration (Fluids) at the End of Life It is very common for doctors to provide ... or recovering from surgery. This is called “artificial nutrition and hydration” and like all medical treatments, it ...

  19. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The Consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study.

    Sprung, Charles L; Truog, Robert D; Curtis, J Randall; Joynt, Gavin M; Baras, Mario; Michalsen, Andrej; Briegel, Josef; Kesecioglu, Jozef; Efferen, Linda; De Robertis, Edoardo; Bulpa, Pierre; Metnitz, Philipp; Patil, Namrata; Hawryluck, Laura; Manthous, Constantine; Moreno, Rui; Leonard, Sara; Hill, Nicholas S; Wennberg, Elisabet; McDermid, Robert C; Mikstacki, Adam; Mularski, Richard A; Hartog, Christiane S; Avidan, Alexander

    2014-10-15

    Great differences in end-of-life practices in treating the critically ill around the world warrant agreement regarding the major ethical principles. This analysis determines the extent of worldwide consensus for end-of-life practices, delineates where there is and is not consensus, and analyzes reasons for lack of consensus. Critical care societies worldwide were invited to participate. Country coordinators were identified and draft statements were developed for major end-of-life issues and translated into six languages. Multidisciplinary responses using a web-based survey assessed agreement or disagreement with definitions and statements linked to anonymous demographic information. Consensus was prospectively defined as >80% agreement. Definitions and statements not obtaining consensus were revised based on comments of respondents, and then translated and redistributed. Of the initial 1,283 responses from 32 countries, consensus was found for 66 (81%) of the 81 definitions and statements; 26 (32%) had >90% agreement. With 83 additional responses to the original questionnaire (1,366 total) and 604 responses to the revised statements, consensus could be obtained for another 11 of the 15 statements. Consensus was obtained for informed consent, withholding and withdrawing life-sustaining treatment, legal requirements, intensive care unit therapies, cardiopulmonary resuscitation, shared decision making, medical and nursing consensus, brain death, and palliative care. Consensus was obtained for 77 of 81 (95%) statements. Worldwide consensus could be developed for the majority of definitions and statements about end-of-life practices. Statements achieving consensus provide standards of practice for end-of-life care; statements without consensus identify important areas for future research.

  20. Pricing end-of-life components

    Vadde, Srikanth; Kamarthi, Sagar V.; Gupta, Surendra M.

    2005-11-01

    The main objective of a product recovery facility (PRF) is to disassemble end-of-life (EOL) products and sell the reclaimed components for reuse and recovered materials in second-hand markets. Variability in the inflow of EOL products and fluctuation in demand for reusable components contribute to the volatility in inventory levels. To stay profitable the PRFs ought to manage their inventory by regulating the price appropriately to minimize holding costs. This work presents two deterministic pricing models for a PRF bounded by environmental regulations. In the first model, the demand is price dependent and in the second, the demand is both price and time dependent. The models are valid for single component with no inventory replenishment sale during the selling horizon . Numerical examples are presented to illustrate the models.

  1. Networking to improve end of life care

    2009-01-01

    Network organisations are increasingly common in healthcare. This paper describes an example of clinically led networking, which improved end of life care (EOLC) in care homes, differentiating between a ‘network’ as a formal entity and the more informal process of ‘networking’. The paper begins with a brief discussion of networks and their development in healthcare, then an overview of EOLC policy, the case setting and methods. The paper describes four key features of this networking; (1) how it enabled discussions and implemented processes to help people address difficult taboos about dying; (2) how personal communication and ‘distributed leadership’ facilitated learning; (3) how EOLC occasionally lapsed during the handover of patient care, where personal relationship and communication were weaker; and (4) how successful learning and sharing of best practice was fragile and could be potentially undermined by wider financial pressures in the NHS. PMID:25949588

  2. Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution.

    Snaman, Jennifer M; Torres, Carlos; Duffy, Brian; Levine, Deena R; Gibson, Deborah V; Baker, Justin N

    2016-03-01

    The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction. The study objective was to explore the communication between hospital staff members and patients and families at the time of patients' health decline near the end of life. Twelve bereaved parents participated in a focus group. Semantic content analysis was used to analyze the transcript. Parents' responses to the prompt about typical ways the medical team communicated yielded 109 codes, which were grouped into 12 themes. The most common themes were "patient inclusion" and "explanation of medical plan," both used in 17% of responses. Responses to the prompt about positive and negative aspects of communication generated 208 codes, yielding 15 different themes. The most common theme about positive communication was the "strong relationship between family and staff." The theme "variations in care with a negative impact" was used most frequently in describing negative communication. This study helps to identify techniques that should be used by clinicians as they work with children with cancer and their families, particularly including patients in treatment decisions, ongoing relationship building, communicating with caring and empathy, using an interdisciplinary team for additional support, and pairing bad news with a plan of action.

  3. End-of-life care in the general wards of a Singaporean hospital: an Asian perspective.

    Phua, Jason; Kee, Adrian Chin-Leong; Tan, Adeline; Mukhopadhyay, Amartya; See, Kay Choong; Aung, Ngu Wah; Seah, Angeline S T; Lim, Tow Keang

    2011-12-01

    Despite international differences in cultural perspectives on end-of-life issues, little is known of the care for the dying in the general wards of acute hospitals in Asia. We performed a retrospective medical chart review of all 683 adult patients who died without intensive care unit (ICU) admission in our Singaporean hospital in 2007. We first evaluated the prevalence of do-not-resuscitate (DNR) orders and orders for or against life-sustaining therapies; second, if such orders were discussed with the patients and/or family members; and third, the actual treatments provided before death. There were DNR orders for 66.2% of patients and neither commitment for DNR nor cardiopulmonary resuscitation (CPR) for 28.1%. Orders to limit life-sustaining therapies, including ICU admission, intubation, and vasopressors/inotropes were infrequent. Only 6.2% of the alert and conversant patients with DNR orders were involved in discussions on these orders. In contrast, such discussions with their family members occurred 82.9% of the time. Interventions in the last 24 hours of life included CPR (9.4%), intubation (6.4%), vasopressors/inotropes (14.8%), tube feeding (24.7%), and antibiotics (44.9%). Analgesia was provided in 29.1% of patients. There was a lack of commitment by doctors on orders for DNR/CPR and to limit life-sustaining therapies, infrequent discussions with patients on end-of-life decisions, and excessive burdensome interventions with inadequate palliative care for the dying. These findings may reflect certain Asian cultural biases. More work is required to improve our quality of end-of-life care.

  4. Patient-Clinician Communication About End-of-Life Care in Patients With Advanced Chronic Organ Failure During One Year.

    Houben, Carmen H M; Spruit, Martijn A; Schols, Jos M G A; Wouters, Emiel F M; Janssen, Daisy J A

    2015-06-01

    Patient-clinician communication is an important prerequisite to delivering high-quality end-of-life care. However, discussions about end-of-life care are uncommon in patients with advanced chronic organ failure. The aim was to examine the quality of end-of-life care communication during one year follow-up of patients with advanced chronic organ failure. In addition, we aimed to explore whether and to what extent quality of communication about end-of-life care changes toward the end of life and whether end-of-life care communication is related to patient-perceived quality of medical care. Clinically stable outpatients (n = 265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess quality of end-of-life care communication (Quality of Communication questionnaire). Two years after baseline, survival status was assessed, and if patients died during the study period, a bereavement interview was done with the closest relative. One year follow-up was completed by 77.7% of the patients. Quality of end-of-life care communication was rated low at baseline and did not change over one year. Quality of end-of-life care communication was comparable for patients who completed two year follow-up and patients who died during the study. The correlation between quality of end-of-life care communication and satisfaction with medical treatment was weak. End-of-life care communication is poor in patients with chronic organ failure and does not change toward the end of life. Future studies should develop an intervention aiming at initiating high-quality end-of-life care communication between patients with advanced chronic organ failure and their clinicians. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  5. End-of-life palliative chemotherapy: Where do we stand?

    Mohammed, A.A.; Al-Zahrani, A.S.; Ghanem, H.M.; El Saify, A.M.; EL-Khatib, H.M.; Mohammed, A.A.; Farooq, M.U.

    2015-01-01

    Background: This study evaluates the use of palliative chemotherapy (PCT) and possible associated factors at the end of life. Method: The study includes all advanced non hematological cancer patients who died in the King Abdullah Medical City during the period from January 2011 to April 2014. Demographic and disease features were registered. Results: 420 patients were included in the study, median age 62 years (range 17-108); 52% female and 48% male. 87.4% of patients were Saudis and 12.6% non Saudis. 124 (29.5%) patients received PCT at the last month before death (LM-PCT): 21.8%, 22.6% and 55.6% within one, two and four weeks of death, respectively. Place of death (critical care vs. regular ward) and mode of admission (ER vs. OPD vs. Transferred) had a strong association with LM-PCT (p< 0.0001, / = 0.35) and (p< 0.0001, V = 0.43), respectively. There was a gradual increase in the number of patients receiving LM-PCT from January 2011 to April 2014; 15.3%, 28.2%, 37.1% and 19.4%, respectively. Conclusion: In our center; at the end of life, there is a gradual increase in the number of patients receiving chemotherapy which significantly increased cancer patients’ odds without clear predictive factors associated with its use, which calls into question the benefits of PCT in terminally ill cancer patients.

  6. Communication Matters: Exploring the Intersection of Family and Practitioner End of Life Communication

    Leah M. Omilion-Hodges

    2017-03-01

    Full Text Available After establishing a baseline understanding of some of the factors that influence and shape family end of life communication, empirical research centered on the communication tendencies of nationally-recognized palliative care clinicians is presented. Because death is no longer confined to the bedroom and individuals are increasingly turning to hospitals and health care institutes to assist with end of life, the role of palliative care practitioners is vital. To that end, common communication-rooted issues that may transpire among various medical personnel are explored. Focus on a shared underlying tension—care vs. cure—links the findings between family and palliative care clinician communication regarding end of life. Practical communication solutions and suggestions are offered to facilitate productive and mindful end of life communication between and among family members and health care practitioners.

  7. Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.

    Rapoport, Adam; Shaheed, Jenny; Newman, Christine; Rugg, Maria; Steele, Rose

    2013-05-01

    Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. All parents were satisfied with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option.

  8. The Evolution of End-of-Life Care: Ethical Implications for Case Management.

    Fink-Samnick, Ellen

    2016-01-01

    This article: : Applicable to all health care sectors where case management is practiced. Few topics are more intimate and multifaceted for case managers than engaging with today's culturally diverse patient populations around end-of-life processes. The already prominent focus of this issue has been further elevated by a series of events to receive public attention. These include the Institute of Medicine's 2014 report-Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, rising numbers of patients around the globe requesting to end life on their own terms, and corresponding death with dignity initiatives and legislation.Another vital factor in the end-of-life equation involves how the latest generation of shared decision making influences the management of treatment dialogues among practitioners, patients, as well as insurance companies. Case managers are at the intersection of these complex interactions, working to achieve ethical, as well as legal accountability to the patient, employer, and profession while balancing personal perspectives. Professionals strive to effectively intervene with patients and their support systems facing end-of-life care decisions. It is essential case managers actively consider the intricacies of ethical practice and current contexts including death with dignity legislation, shared decision making, and shifts in regulations and reimbursement for end-of-life care.Case management's ethical envelope will continue to be pushed. To that end amid shifting societal constructs, professionals must have mastery of applicable codes, standards, principles, and rules essential for adherence to ethical practice.

  9. End-of-Life Nursing Care and Education: End-of-Life Nursing Education: Past and Present.

    DʼAntonio, Jocelyn

    The dying experience is forever carried in the life story of those for whom the nurse cares. A goal of end-of-life nursing education is to produce nurses who are comfortable with death and dying and who have had the opportunity to reflect on their thoughts and feelings about end-of-life care. This article reviews the history, development, and teaching methods of end-of-life care, offering recommendations for future education.

  10. Palliative care at the end-of-life in glioma patients.

    Koekkoek, Johan A F; Chang, Susan; Taphoorn, Martin J B

    2016-01-01

    The end-of-life (EOL) phase of patients with a glioma starts when symptom prevalence increases and antitumor treatment is no longer effective. During the EOL phase, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible without inappropriate prolongation of life. Palliative care during the EOL phase also involves complex medical decisions for the prevention and relief of suffering. We discuss the prevalence and treatment of the most common EOL symptoms, decision making in the EOL phase, the organization of EOL care, and the role of the patient's caregiver. Treating disease-specific symptoms, such as impaired consciousness, seizures, focal neurologic deficits and cognitive disturbances, is a major concern during the EOL phase, as these symptoms may interfere with EOL decision making. Advance care planning is aimed at reaching consensus about possible EOL decisions between all participants, respecting the values of patients and their informal caregivers. In order to prevent the possibility that the patient becomes incompetent to make informed decisions, we recommend initiating EOL conversations at a relatively early stage in the disease course. © 2016 Elsevier B.V. All rights reserved.

  11. [End of life and vulnerability, a public health issue].

    Boucomont, Aude

    2016-02-01

    End of life and precarity, two words which were linked by the French national observatory for end of life care in its work carried out in 2014. The study provided an overview of current support practices in different areas, highlighting certain lessons to be learned and making recommendations to the different partners involved. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  12. Are end-of-life practices in Norway in line with ethics and law?

    Førde, R; Aasland, O G

    2014-10-01

    End-of-life decisions, including limitation of life prolonging treatment, may be emotionally, ethically and legally challenging. Euthanasia and physician-assisted suicide (PAS) are illegal in Norway. A study from 2000 indicated that these practices occur infrequently in Norway. In 2012, a postal questionnaire addressing experience with limitation of life-prolonging treatment for non-medical reasons was sent to a representative sample of 1792 members of the Norwegian Medical Association (7.7% of the total active doctor population of 22,500). The recipients were also asked whether they, during the last 12 months, had participated in euthanasia, PAS or the hastening of death of non-competent patients. Seventy-one per cent of the doctors responded. Forty-four per cent of the respondents reported that they had terminated treatment at the family's request not knowing the patient's own wish, doctors below 50 and anaesthesiologists more often. Anaesthesiologists more often reported to have terminated life-prolonging treatment because of resource considerations. Six doctors reported having hastened the death of a patient the last 12 months, one by euthanasia, one by PAS and four had hastened death without patient request. Male doctors and doctors below 50 more frequently reported having hastened the death of a patient. Forgoing life-prolonging treatment at the request of the family may be more frequent in Norway that the law permits. A very small minority of doctors has hastened the death of a patient, and most cases involved non-competent patients. Male doctors below 50 seem to have a more liberal end-of-life practice. © 2014 The Acta Anaesthesiologica Scandinavica Foundation. Published by John Wiley & Sons Ltd.

  13. Current debates on end-of-life sedation: an international expert elicitation study.

    Papavasiliou, Evangelia Evie; Payne, Sheila; Brearley, Sarah

    2014-08-01

    End-of-life sedation, though increasingly prevalent and widespread internationally, remains one of the most highly debated medical practices in the context of palliative medicine. This qualitative study aims to elicit and record the perspectives of leading international palliative care experts on current debates. Twenty-one professionals from diverse backgrounds, sharing field-specific knowledge/expertise defined by significant scholarly contribution on end-of-life sedation, were recruited. Open-ended, semi-structured interviews, following a topic-oriented structure reflecting on current debates, were conducted. Results were analysed using thematic content analysis. Three main aspects of sedation were identified and discussed as potentially problematic: (a) continuous deep sedation as an extreme facet of end-of-life sedation, (b) psycho-existential suffering as an ambivalent indication for sedation and (c) withdrawal or withholding of artificial nutrition and hydration as potentially life-shortening. On these grounds, concerns were reported over end-of-life sedation being morally equivalent to euthanasia. Considerable emphasis was placed on intentions as the distinguishing factor between end-of-life acts, and protective safeguards were introduced to distance sedation from euthanasia. This study shows that, despite the safeguards introduced, certain aspects of sedation, including the intentions associated with the practice, are still under question, parallels being drawn between end-of-life sedation and euthanasia. This reaffirms the existence of a grey area surrounding the two practices, already evidenced in countries where euthanasia is legalized. More clarity over the issues that generate this grey area, with their causes being uncovered and eliminated, is imperative to resolve current debates and effectively inform research, policy and practice of end-of-life sedation.

  14. Involvement of nurses in end-of-life discussions for severely disabled children

    Zaal-Schuller, I. H.; Willems, D. I.; Ewals, F.; van Goudoever, J. B.; de Vos, M. A.

    2018-01-01

    In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research

  15. End-of-life expectations and experiences among nursing home patients and their relatives

    Fosse, Anette; Schaufel, Margrethe Aase; Ruths, Sabine

    2014-01-01

    . CONCLUSION: Nursing home patients and their relatives wanted doctors more involved in end-of-life care. They expected doctors to acknowledge their preferences and provide guidance and symptom relief. PRACTICE IMPLICATIONS: High-quality end-of-life care in nursing homes relies on organization, funding......OBJECTIVE: Synthesize research about patients' and relatives' expectations and experiences on how doctors can improve end-of-life care in nursing homes. METHODS: We systematically searched qualitative studies in English in seven databases (Medline, Embase, PsycINFO, CINAHL, Ageline, Cochrane...... decision-makers reported uncertainty and distress when guidance from health personnel was lacking. They worried about staff shortage and emphasized doctor availability. Relatives and health personnel seldom recognized patients' ability to consent, and patients' preferences were not always recognized...

  16. The role of the bioethicist in family meetings about end of life care.

    Watkins, Liza T; Sacajiu, Galit; Karasz, Alison

    2007-12-01

    There has been little study of the content of bioethicists' communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the "consultant" role, in which bioethicists define and support ethical principles such as those enshrined in the "rational choice" model; and the "mediator" role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the "rational choice" decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context-dependent approach to mediation, with bioethicists' contributions generally supporting staff views about end of life care. Bioethicists' called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, "persuader", to official roles of "consultant" and "mediator".

  17. End of life care - the importance of culture and ethnicity.

    Clark, Katherine; Phillips, Jane

    2010-04-01

    Australia is a culturally and ethnically diverse country. Within such diversity there will be differing beliefs systems about death and dying. This may be a challenging prospect for health professionals. This article discusses how cultural diversity may impact care and provides some strategies for the general practitioner when considering the provision of end of life care. This article does not attempt to provide GPs with a prescriptive approach to multicultural care, as this would run the risk of stereotyping individuals. Rather, it discusses the barriers to end of life care among different cultural and ethnic groups, and suggests ways in which to improve understanding of different cultural needs in end of life care.

  18. Living Wills and Advance Directives for Medical Decisions

    ... own thoughts and having conversations with others about medical care and end-of-life care are available through the American Bar Association, the Conversation Project and the Center for Practical Bioethics. You should address a number of possible end- ...

  19. [Ethical issues in the practice of advance directives, living wills, and self-determination in end of life care].

    Fang, Hui-Feng; Jhing, Huei-Yu; Lin, Chia-Chin

    2009-02-01

    The Hospice-Palliative Care Act, enacted in Taiwan in 2000, was designed to respect the end of life medical wishes of patients with incurable illnesses, safeguard the rights of these patients, and provide clinical guidelines for healthcare workers responsible to provide end of life care. Self-determination is a core element of human dignity. Advance directive documents include a living will, and durable power of attorney for healthcare. This article reviews current issues and ethical dilemmas with regard to advance directives. Patients, family members, and clinicians may require better education on the Hospice-Palliative Care Act in order to respect more appropriately patient end of life medical care wishes.

  20. Palliative sedation in end-of-life care.

    Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

    2013-07-01

    The aim of this review was to present and comment on recent data published on palliative sedation in palliative and end-of-life care. Palliative sedation is a medical procedure used to deal with the refractory symptoms occurring in the advanced stages of cancer. It has clinical, nursing, relational and ethical implications, making it a highly sensitive issue. Over the last 12 months, a number of authors have published interesting new findings on different areas of palliative sedation, that is prevalence, indications, monitoring, duration and choice of drugs. In particular, a clear definition of palliative sedation and of its more pronounced form, deep continuous sedation (DCS), has emerged. It has been confirmed that, when performed in the correct way and with the right aims, palliative sedation does not have a detrimental impact on survival. Recent findings confirm that palliative sedation is an integral part of a medical palliative care approach and is needed in certain clinical situations. It is a legitimate clinical practice from any ethical point of view. While oncologists should have a basic knowledge of the procedure, its in depth study is a core competency for palliative care physicians.

  1. The family physician's perceived role in preventing and guiding hospital admissions at the end of life: a focus group study.

    Reyniers, Thijs; Houttekier, Dirk; Pasman, H Roeline; Stichele, Robert Vander; Cohen, Joachim; Deliens, Luc

    2014-01-01

    Family physicians play a pivotal role in providing end-of-life care and in enabling terminally ill patients to die in familiar surroundings. The purpose of this study was to explore the family physicians' perceptions of their role and the difficulties they have in preventing and guiding hospital admissions at the end of life. Five focus groups were held with family physicians (N= 39) in Belgium. Discussions were transcribed verbatim and analyzed using a constant comparative approach. Five key roles in preventing and guiding hospital admissions at the end of life were identified: as a care planner, anticipating future scenarios; as an initiator of decisions in acute situations, mostly in an advisory manner; as a provider of end-of-life care, in which competency and attitude is considered important; as a provider of support, particularly by being available during acute situations; and as a decision maker, taking overall responsibility. Family physicians face many different and complex roles and difficulties in preventing and guiding hospital admissions at the end of life. Enhancing the family physician's role as a gatekeeper to hospital services, offering the physicians more end-of-life care training, and developing or expanding initiatives to support them could contribute to a lower proportion of hospital admissions at the end of life. © 2014 Annals of Family Medicine, Inc.

  2. End-of-Life Conversation Game Increases Confidence for Having End-of-Life Conversations for Chaplains-in-Training.

    Van Scoy, Lauren Jodi; Watson-Martin, Elizabeth; Bohr, Tiffany A; Levi, Benjamin H; Green, Michael J

    2018-04-01

    Discussing end-of-life issues with patients is an essential role for chaplains. Few tools are available to help chaplains-in-training develop end-of-life communication skills. This study aimed to determine whether playing an end-of-life conversation game increases the confidence for chaplain-in-trainings to discuss end-of-life issues with patients. We used a convergent mixed methods design. Chaplains-in-training played the end-of-life conversation game twice over 2 weeks. For each game, pre- and postgame questionnaires measured confidence discussing end-of-life issues with patients and emotional affect. Between games, chaplains-in-training discussed end-of-life issues with an inpatient. One week after game 2, chaplains-in-training were individually interviewed. Quantitative data were analyzed using descriptive statistics and Wilcoxon rank-sum t tests. Content analysis identified interview themes. Quantitative and qualitative data sets were then integrated using a joint display. Twenty-three chaplains-in-training (52% female; 87% Caucasian; 70% were in year 1 of training) completed the study. Confidence scores (scale: 15-75; 75 = very confident) increased significantly after each game, increasing by 10.0 points from pregame 1 to postgame 2 ( P game, and shyness subscale scores decreased significantly after each game. Content analysis found that chaplains-in-training found the game to be a positive, useful experience and reported that playing twice was beneficial (not redundant). Mixed methods analysis suggest that an end-of-life conversation game is a useful tool that can increase chaplain-in-trainings' confidence for initiating end-of-life discussions with patients. A larger sample size is needed to confirm these findings.

  3. Culturally Diverse Communities and End-of-Life Care

    ... Azen, S.P. (1995). Ethnicity and attitudes toward patient autonomy. JAMA, 274, 820-5 . Phipps, E., True, G., & ... briefly about end-of-life options and neglect culture or values (Tulsky, Fischer, Rose, & Arnold, 1998). Speaking ...

  4. At-home palliative sedation for end-of-life cancer patients.

    Alonso-Babarro, Alberto; Varela-Cerdeira, Maria; Torres-Vigil, Isabel; Rodríguez-Barrientos, Ricardo; Bruera, Eduardo

    2010-07-01

    Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team. Twenty-nine of 245 patients (12%) who died at home had received palliative sedation. The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0.002). No other differences were detected between patients who did or did not receive palliative sedation. The most common indications for palliative sedation were delirium (62%) and dyspnea (14%). Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg). The mean time between palliative sedation initiation and time of death was 2.6 days. In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members. We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home.

  5. [New research on the practice, reporting and reviewing of euthanasia and other medical end-of-life decisions, 2001/2002

    Wal, G. van der; Maas, P.J. van der; Onwuteaka-Philipsen, B.D.; Heide, A. van der

    2001-01-01

    In the second half of 2001, an extensive study will start which will evaluate the review procedure for euthanasia in the Netherlands. Since the end of 1998, euthanasia has to be reviewed by regional review committees, which include a physician and an ethicist, in addition to a legal expert. The aim

  6. Wind Turbine Blades: An End of Life Perspective

    Beauson, Justine; Brøndsted, Povl

    2016-01-01

    In 2016, the first offshore windfarm constructed in the world—located in Denmark, near Ravnsborg—is turning 25 years old, and will soon be decommissioned. After decommissioning, most of the material of the turbine can be recycled; only the composite materials found in the blades represent...... a challenge. This part looks at end of life solutions for this material. Wind turbine blade structure and material are described. The ends of life solutions existing and under development are detailed....

  7. Economic impact analysis of an end-of-life programme for nursing home residents.

    Teo, W-S Kelvin; Raj, Anusha Govinda; Tan, Woan Shin; Ng, Charis Wei Ling; Heng, Bee Hoon; Leong, Ian Yi-Onn

    2014-05-01

    Due to limited end-of-life discussions and the absence of palliative care, hospitalisations are frequent at the end of life among nursing home residents in Singapore, resulting in high health-care costs. Our objective was to evaluate the economic impact of Project Care at the End-of-Life for Residents in homes for the Elderly (CARE) programme on nursing home residents compared to usual end-of-life care. DESIGN AND SETTINGS/PARTICIPANTS: Project CARE was introduced in seven nursing homes to provide advance care planning and palliative care for residents identified to be at risk of dying within 1 year. The cases consisted of nursing home residents enrolled in the Project CARE programme for at least 3 months. A historical group of nursing home residents not in any end-of-life care programme was chosen as the matched controls. Cost differences between the two groups were analysed over the last 3 months and final month of life. The final sample comprised 48 Project CARE cases and 197 controls. Compared to the controls, the cases were older with more comorbidities and higher nursing needs. After risk adjustment, Project CARE cases demonstrated per-resident cost savings of SGD$7129 (confidence interval: SGD$4544-SGD$9714) over the last 3 months of life and SGD$3703 (confidence interval: SGD$1848-SGD$5557) over the last month of life (US$1 = SGD$1.3). This study demonstrated substantial savings associated with an end-of-life programme. With a significant proportion of the population in Singapore requiring nursing home care in the near future, these results could assist policymakers and health-care providers in decision-making on allocation of health-care resources.

  8. How Islam Influences End-of-Life Care: Education for Palliative Care Clinicians.

    Leong, Madeline; Olnick, Sage; Akmal, Tahara; Copenhaver, Amanda; Razzak, Rab

    2016-12-01

    According to the Joint Commission, cultural competency is a core skill required for end-of-life care. Religious and cultural beliefs predominantly influence patients' lives, especially during the dying process. Therefore, palliative care clinicians should have at least a basic understanding of major world religions. Islam is a major world religion with 1.7 billion followers. At our institution, a needs assessment showed a lack of knowledge with Islamic teachings regarding end-of-life care. To improve knowledge of clinically relevant Islamic teachings regarding end-of-life care. After consultation with a Muslim chaplain, we identified key topics and created a 10-question pretest. The pretest was administered, followed by a one-hour educational intervention with a Muslim chaplain. Next, a post-test (identical to the pretest) was administered. Eleven palliative care clinicians participated in this study. The average score on the pretest was 6.0 ± 1.2 (mean + SD) (maximum 10). After the educational intervention, the average score improved to 9.6 ± 0.7 (95% CI 2.7-4.4; P Islam influences patients' end-of-life decisions. In this pilot study, a one-hour educational intervention improved knowledge of Islamic teachings regarding end-of-life care. We present a framework for this intervention, which can be easily replicated. We also provide key teaching points on Islam and end-of-life care. Additional research is necessary to determine the clinical effects of this intervention over time and in practice. In the future, we plan to expand the educational material to include other world religions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  9. Sedation, alimentation, hydration, and equivocation: careful conversation about care at the end of life.

    Jansen, Lynn A; Sulmasy, Daniel P

    2002-06-04

    In the recent medical ethics literature, several authors have recommended terminal sedation and refusal of hydration and nutrition as important, morally acceptable, and relatively uncontroversial treatment options for end-of-life suffering. However, not all authors use these terms to refer to the same practices. This paper examines the various ways that the terms terminal sedation and refusal of hydration and nutrition have been used in the medical literature. Although some of these practices are ethically appropriate responses to end-of-life suffering, others (at least as they are currently described in the medical ethics literature) are not. This paper identifies and discusses the principles that morally distinguish these practices from one another and specifically describes different features of medical practices and moral principles that affect the moral acceptability of various medical treatments. These distinctions reveal the complexity of the issues surrounding terminal sedation and refusal of hydration and nutrition, a complexity that has not been adequately addressed in recent discussions.

  10. Can Playing an End-of-Life Conversation Game Motivate People to Engage in Advance Care Planning?

    Van Scoy, Lauren J; Green, Michael J; Reading, Jean M; Scott, Allison M; Chuang, Cynthia H; Levi, Benjamin H

    2017-09-01

    Advance care planning (ACP) involves several behaviors that individuals undertake to prepare for future medical care should they lose decision-making capacity. The goal of this study was to assess whether playing a conversation game could motivate participants to engage in ACP. Sixty-eight English-speaking, adult volunteers (n = 17 games) from communities around Hershey, Pennsylvania, and Lexington, Kentucky, played a conversation card game about end-of-life issues. Readiness to engage in 4 ACP behaviors was measured by a validated questionnaire (based on the transtheoretical model) immediately before and 3 months postgame and a semistructured phone interview. These behaviors were (1) completing a living will; (2) completing a health-care proxy; (3) discussing end-of-life wishes with loved ones; and (4) discussing quality versus quantity of life with loved ones. Participants' (n = 68) mean age was 51.3 years (standard deviation = 0.7, range: 22-88); 94% of the participants were caucasian and 67% were female. Seventy-eight percent of the participants engaged in ACP behaviors within 3 months of playing the game (eg, updating documents, discussing end-of-life issues). Furthermore, 73% of the participants progressed in stage of change (ie, readiness) to perform at least 1 of the 4 behaviors. Scores on measures of decisional balance and processes of change increased significantly by 3 months postintervention. This pilot study found that individuals who played a conversation game had high rates of performing ACP behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.

  11. End-of-life care in pediatric neuro-oncology.

    Vallero, Stefano Gabriele; Lijoi, Stefano; Bertin, Daniele; Pittana, Laura Stefania; Bellini, Simona; Rossi, Francesca; Peretta, Paola; Basso, Maria Eleonora; Fagioli, Franca

    2014-11-01

    The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might have additional needs because of the presence of unique issues, such as neurological impairment and altered consciousness. Very few reports specifically concerning the EOL period in pediatric neuro-oncology are available. Among all patients followed at our center during the EOL, we retrospectively analyzed data from 39 children and adolescents with brain tumors, in order to point out on their peculiar needs. Patients were followed-up for a median time of 20.1 months. Eighty-two percent were receiving only palliative therapy before death. Almost half the patients (44%) died at home, while 56% died in a hospital. Palliative sedation with midazolam was performed in 58% of cases; morphine was administered in 51.6% of cases. No patient had uncontrolled pain. The EOL in children with advanced CNS cancer is a period of active medical care. Patients may develop complex neurological symptoms and often require long hospitalization. We organized a network-based collaboration among the reference pediatric oncology center, other pediatric hospitals and domiciliary care personnel, with the aim to ameliorate the quality of care during the EOL period. In our cohort, palliative sedation was widely used while no patients died with uncontrolled pain. A precise process of data collection and a better sharing of knowledge are necessary in order to improve the management of such patients. © 2014 Wiley Periodicals, Inc.

  12. Nasogastric feeding at the end of life: a virtue ethics approach.

    Krishna, Lalit

    2011-07-01

    The use of Nasogastric (NG) feeding in the provision of artificial nutrition and hydration at the end of life has, for the most part, been regarded as futile by the medical community. This position has been led chiefly by prevailing medical data. In Singapore, however, there has been an increase in its utilization supported primarily by social, religious and cultural factors expressly to prolong life of the terminally ill patient. Here this article will seek to review the ethical and clinical impact of this treatment and provide some understanding for such decisions in the light of the Duty of Palliative Care [DoPC]. Complemented by virtue ethics theory, the DoPC highlights and seeks to realize the individual case specific goals of care that maximize comfort and quality of life of the patient in the face of rapid attenuation of treatment options and the eminence of the final outcome by considering each of these factors individually in order to provide the best outcome for the patient and the family.

  13. End-of-Life Inventory Decisions of Service Parts

    M. Pourakbar (Morteza)

    2011-01-01

    textabstractWith the spurt of technology and innovation the life cycles of parts and products have become shorter and service parts enter their final phases earlier. Final phase of a typical service part starts once the part production is ceased and ends when the last service or warranty contract

  14. Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK.

    Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina A; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Akhtar, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken

    2014-09-01

    South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues. © 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association.

  15. Teaching advance care planning to medical students with a computer-based decision aid.

    Green, Michael J; Levi, Benjamin H

    2011-03-01

    Discussing end-of-life decisions with cancer patients is a crucial skill for physicians. This article reports findings from a pilot study evaluating the effectiveness of a computer-based decision aid for teaching medical students about advance care planning. Second-year medical students at a single medical school were randomized to use a standard advance directive or a computer-based decision aid to help patients with advance care planning. Students' knowledge, skills, and satisfaction were measured by self-report; their performance was rated by patients. 121/133 (91%) of students participated. The Decision-Aid Group (n = 60) outperformed the Standard Group (n = 61) in terms of students' knowledge (p satisfaction with their learning experience (p student performance. Use of a computer-based decision aid may be an effective way to teach medical students how to discuss advance care planning with cancer patients.

  16. End-of-Life Preferences: A Theory-Driven Inventory

    Bonin-Scaon, Sylvie; Munoz Sastre, Maria Teresa; Chasseigne, Gerard; Sorum, Paul C.; Mullet, Etienne

    2009-01-01

    The study aimed at making a theory-driven inventory of end-of-life preferences. Participants were asked about a variety of preferences representing all eight motivational states described in Apter's Metamotivational Theory (AMT; Apter, 2001). Data from a convenience sample of 965 community participants and a convenience sample of 81 persons…

  17. Improving end-of-life care: Recommendations from the IOM.

    Dobbins, Elizabeth H

    2016-09-22

    A 2014 consensus report by the Institute of Medicine offers recommendations for healthcare providers to decrease unwanted care and improve the quality of life at the end of life. This article discusses the recommendations of interest to advanced practice registered nurses.

  18. 47 CFR 25.283 - End-of-life disposal.

    2010-10-01

    ... 47 Telecommunication 2 2010-10-01 2010-10-01 false End-of-life disposal. 25.283 Section 25.283 Telecommunication FEDERAL COMMUNICATIONS COMMISSION (CONTINUED) COMMON CARRIER SERVICES SATELLITE COMMUNICATIONS... satellite orbit under this part shall be relocated, at the end of its useful life, barring catastrophic...

  19. Continuous subcutaneous infusion of opiates at end-of-life.

    Anderson, Stacey L; Shreve, Scott T

    2004-06-01

    To review pertinent controlled trials using the continuous subcutaneous infusion of opioids (CSIO) at end-of-life and offer insight to pharmacists and clinicians into the appropriate use of this route of administration. A MEDLINE search for information regarding the subcutaneous administration of opioids in terminally ill patients (1975-December 2002) was conducted using the key words subcutaneous, narcotics, morphine, hydromorphone, fentanyl, pain, hospices, and palliative care. Additional references were located through review of bibliographies of the articles cited. Case reports and postsurgical studies were excluded. Searches were limited to English-language studies using humans. Experimental and observational studies were evaluated, using prospective trials as the evidence base for conclusions and including pertinent retrospective trials as they relate to the subcutaneous infusion of opioids at end-of-life. CSIO is effective and safe for use in terminal illness. Appropriate situations for consideration of CSIO are when difficulties arise in using the oral route, standard oral opiate therapy has failed adequate trials, the patient has limited intravenous access, adequate supervision of the CSIO is present, and CSIO will not unduly limit the functional activity of the patient. CSIO has a proven role in the management of pain at end-of-life. CSIO should not be considered the first route for administration of opiates, but does offer distinct advantages in the appropriate setting. CSIO continues to be a choice for end-of-life patients and is gradually becoming a standard practice in palliative medicine.

  20. End-of-life-vignettes. A Chaplain's story.

    Bodemann, Christina

    2014-03-01

    Julia, a 31-year-old woman, is brain dead after having suffered a cardiac arrest. This article describes a hospital chaplain's journey with her family through the tragedy of letting her die. It addresses the power of pastoral presence and prayer in a situation of loss and grief and the importance of storytelling for everyone involved in Julia's end-of-life care.

  1. Family-centered end-of-life care in the ICU.

    Wiegand, Debra L; Grant, Marian S; Cheon, Jooyoung; Gergis, Mary A

    2013-08-01

    Families of older adults are intricately involved in the end-of-life decision-making process for a family member with a serious illness in the intensive care unit (ICU) setting. However, families are not always as involved and as informed as they would like to be. Creating a culture that assesses family needs and supports families is an important component of family-centered care. There are several strategies that nurses and other members of the interdisciplinary team can use to promote family-centered end-of-life care in the ICU. Nurses can get to know the family by spending time talking with them, assessing them, seeking to understand their perspectives on their family member's condition, and discussing previously verbalized patient wishes for care. This article offers strategies nurses can use to help guide the family through the end-of-life decision-making process, support families as difficult and complex decisions are made in collaboration with the health care team, and prepare families for the dying process. Copyright 2013, SLACK Incorporated.

  2. The Structure of Medical Decisions

    Austin, Laurel C.; Reventlow, Susanne; Sandøe, Peter

    2013-01-01

    ) an individual for a population-based intervention. Analysis of these situations facilitates examination of intuitive probabilistic reasoning. Drawing on evidence in related literature, we discuss some implications of decision-makers imposing the wrong structure or probabilistic reasoning when making medical......Increasingly, medical choices involve deciding whether to look for evidence of undetected, asymptomatic conditions, or increased risk of future conditions (i.e. screening). Those who screen at sufficiently high risk face decisions about interventions to prevent or postpone the onset of possible......, but not certain, future symptomatic conditions. Other preventive decisions include whether or not to accept population-based intervention, such as vaccination. Using decision trees, we model the normative structures and associated uncertainties that underlie five medical decision situations, each of which...

  3. Experiences and Opinions Related to End-of-Life Discussion: From Oncologists' and Resident Physicians' Perspectives.

    Koh, Su-Jin; Kim, Shinmi; Kim, JinShil; Keam, Bhumsuk; Heo, Dae Seog; Lee, Kyung Hee; Kim, Bong-Seog; Kim, Jee Hyun; Chang, Hye Jung; Baek, Sun Kyung

    2018-04-01

    The aims of this study were to explore how oncologists and resident physicians practice end-of-life (EOL) discussions and to solicit their opinions on EOL discussions as a means to improve the quality of EOL care. A survey questionnaire was developed to explore the experiences and opinions about EOL discussions among oncologists and residents. Descriptive statistics, the t test, and the chisquare test were performed for the analyses. A total of 147 oncologists and 229 residents participated in this study. The study respondents reported diverse definitions of "terminal state," and mostrespondents tried to disclose the patient's condition to the patient and/or family members. Both groups were involved in EOL care discussions, with a rather low satisfaction level (57.82/100). The best timing to initiate discussionwas consideredwhen metastasis or disease recurrence occurred orwhen withdrawal of chemotherapy was anticipated. Furthermore, the study respondents suggested that patients and their family members should be included in the EOL discussion. Medical, legal, and ethical knowledge and communication difficulties along with practical issues were revealed as barriers and facilitators for EOL discussion. This study explored various perspectives of oncologists and resident physicians for EOL discussion. Since the Life-Sustaining-Treatment Decision-Making Act will be implemented shortly in Korea, now is the time for oncologists and residents to prepare themselves by acquiring legal knowledge and communication skills. To achieve this, education, training, and clinical tools for healthcare professionals are required.

  4. Intensity of Care at the End of Life Among Older Adults in Korea.

    Kim, Su Hyun; Kang, Sangwook; Song, Mi-Kyung

    2018-01-01

    To examine the intensity of care at the end of life among older adults in Korea and to identify the individual and institutional factors associated with care intensity. This secondary data analysis included a sample of 6278 decedents aged 65 years or older who were identified from the 2009 to 2010 Korean National Health Insurance Service-National Sample Cohort Claims data. We examined the medical care received by the cohort in the last 30 days of their lives. Overall, 36.5% of the sample received at least 1 intensive care procedure in the last 30 days of their lives; 26.3% of patients experienced intensive care unit admission, with an average stay of 7.45 days, 19.5% received mechanical ventilation, 12.3% received cardiopulmonary resuscitation, and 15.5% had a feeding tube placement. A statistical analysis using a multiple logistic regression model with random effects showed that younger age, higher household income, primary diagnoses of diseases (ischemic heart disease, infectious disease, chronic lung disease, or chronic heart disease), and characteristics of care setting (large hospitals and facilities located in metropolitan areas) were significantly associated with the likelihood of receiving high-intensity care at the end of life. A substantial number of older adults in Korea experienced high-intensity end-of-life care. Both individual and institutional factors were associated with the likelihood of receiving high-intensity care. Gaining an understanding of the intensity of care at the end of life and the impact of the determinants would advance efforts to improve quality of care at the end of life for older adults in Korea.

  5. Enabling occupation at the end of life: A literature review.

    Mills, Katherine; Payne, Angela

    2015-12-01

    Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams. Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments. Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy. A "good death" involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning

  6. Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review.

    Rainsford, Suzanne; MacLeod, Roderick D; Glasgow, Nicholas J; Phillips, Christine B; Wiles, Robert B; Wilson, Donna M

    2017-12-01

    End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care. To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences. A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors. A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'. Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

  7. End-of-life practices: The opinions of undergraduate medical ...

    South African Journal of Bioethics and Law. Journal Home · ABOUT THIS JOURNAL · Advanced Search · Current Issue · Archives · Journal Home > Vol 10, No 2 (2017) >. Log in or Register to get access to full text downloads.

  8. End-of-Life Transitions and Hospice Utilization for Adolescents: Does Having a Usual Source of Care Matter?

    Keim-Malpass, Jessica; Lindley, Lisa C

    2017-08-01

    Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15-20 years with a life-limiting illness. A retrospective cohort design used 2007-2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.

  9. Pain relief at the end of life: nurses' experiences regarding end-of-life pain relief in patients with dementia.

    Brorson, Hanna; Plymoth, Henrietta; Örmon, Karin; Bolmsjö, Ingrid

    2014-03-01

    Patients with dementia receive suboptimal palliative care, and this patient group is at risk to have pain at the end of life. Because communicative impairments are common in this patient group, nurses play an important caregiver role in identifying, assessing, and relieving patients' pain. This study aimed to describe nurses' experiences regarding end-of-life pain relief in patients with dementia. This descriptive exploratory qualitative study was based on seven semistructured interviews. Burnard's content analysis inspired the data analysis. Two main categories were identified: (1) nurses' experience of difficulties concerning pain relief and (2) nurses' experience of resources concerning pain relief. Nurses experienced difficulties, such as feeling of powerlessness because of difficulties in obtaining adequate prescriptions for analgesics, ethical dilemmas, feeling of inadequacy because analgesia did not have the desired effect, and a feeling of not being able to connect with the patient. Factors, including knowledge about the patient, professional experience, utilization of pain assessment tools, interpersonal relationships, and interprofessional cooperation, served as resources and enabled end-of-life pain relief. The results of this study highlight the complexity of pain relief in patients with dementia at the end of life from a nursing perspective. The inability of patients with dementia to verbally communicate their pain makes them a vulnerable patient group, dependent on their caregivers. Knowing the life story of the patient, professional experience, teamwork based on good communication, and use of a pain assessment tool were reported by the nurses to improve pain relief at the end of life for patients with dementia. Copyright © 2014 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

  10. Death talk: Basic linguistic rules and communication in perinatal and paediatric end-of-life discussions.

    Xafis, Vicki; Watkins, Andrew; Wilkinson, Dominic

    2016-04-01

    This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory. Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication. Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child. Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions. Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

  11. Parental Physical Proximity in End-of-Life Care in the PICU.

    Falkenburg, Jeannette L; Tibboel, Dick; Ganzevoort, Ruard R; Gischler, Saskia; Hagoort, Jacobus; van Dijk, Monique

    2016-05-01

    Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship. Retrospective, qualitative interview study. Level 3 PICU in Erasmus Medical Center in the Netherlands. Thirty-six parents of 20 children who had died in this unit 5 years previously. Parents vividly remembered the damage done to the child's physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death. End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents' experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.

  12. Parent Perspectives of Neonatal Intensive Care at the End-of-Life.

    Currie, Erin R; Christian, Becky J; Hinds, Pamela S; Perna, Samuel J; Robinson, Cheryl; Day, Sara; Meneses, Karen

    2016-01-01

    This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death. Copyright © 2016 Elsevier Inc. All rights reserved.

  13. Artificial hydration and alimentation at the end of life: a reply to Craig.

    Ashby, M; Stoffell, B

    1995-06-01

    Dr Gillian Craig (1) has argued that palliative medicine services have tended to adopt a policy of sedation without hydration, which under certain circumstances may be medically inappropriate, causative of death and distressing to family and friends. We welcome this opportunity to defend, with an important modification, the approach we proposed without substantive background argument in our original article (2). We maintain that slowing and eventual cessation of oral intake is a normal part of a natural dying process, that artificial hydration and alimentation (AHA) are not justified unless thirst or hunger are present and cannot be relieved by other means, but food and fluids for (natural) oral consumption should never be 'withdrawn'. The intention of this practice is not to alter the timing of an inevitable death, and sedation is not used, as has been alleged, to mask the effects of dehydration or starvation. The artificial provision of hydration and alimentation is now widely accepted as medical treatment. We believe that arguments that it is not have led to confusion as to whether or not non-provision or withdrawal of AHA constitutes a cause of death in law. Arguments that it is such a cause appear to be tenuously based on an extraordinary/ordinary categorisation of treatments by Kelly (3) which has subsequently been interpreted as prescriptive in a way quite inconsistent with the Catholic moral theological tradition from which the distinction is derived. The focus of ethical discourse on decisions at the end of life should be shifted to an analysis of care, needs, proportionality of medical interventions, and processes of communication.

  14. Hospice or community network? Choices in end-of-life care in Jamaica.

    Mendoza, Roger Lee

    2017-09-01

    Now considered a subspecialty of medicine and nursing, palliative care is a critical aspect of healthcare at the end of life. National and international healthcare agencies typically attribute its slow or haphazard growth in developing countries to various resource constraints. However, this study provides evidence of the substantial and widening gap between policy advocacy and patient choices in end-of-life care. It does so by establishing the incentives and risks that underlie decision-making by patients and providers against the relative scarcity of palliative care and hospices in these countries. Jamaica offers an illustrative case. It shares the socioeconomic conditions and isolated provision of hospice and palliative care that remain prevalent in many developing countries. Empirical information was collected from all Jamaican hospices, along with agency and media reports, for comparative institutional analysis. Financial and infrastructural challenges hamper hospice expansion and integration into formal healthcare systems in developing countries. Yet, other equally vital considerations are too often neglected. These include the high transaction costs of decision-making, which account for limited hospice accessibility, affordability, and efficiency, particularly to underserved populations. Risk and payoff calculations by patients and their families as well as hospices and their providers lead to two strategic options in maximizing hospice value and/or minimizing transaction costs in end-of-life care. Policy formulation and advocacy for hospice and palliative care should match aggregate demand. The socio-cultural milieu of care is critical and should be equally considered. Otherwise, providing and expanding free or subsidized palliative care at the end-of-life stage can become cost-inefficient relative to robust family and grassroots community networks.

  15. Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care.

    Sharma, Rashmi K; Khosla, Nidhi; Tulsky, James A; Carrese, Joseph A

    2012-03-01

    Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US. To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care. Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life. Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region. Content analysis of focus group transcripts. First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities. Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for

  16. DESIGN CONSIDERATIONS UPON PRODUCT END-OF-LIFE OPTIONS

    BARSAN Lucian

    2016-11-01

    Full Text Available The paper presents some considerations about the necessity of evaluating the environmental impact of a product during its entire life. The present situation (economic, social and ecologic imposes solutions to reduce this impact as a result of an analysis performed during all stages of the life cycle. This paper focuses on design solutions with consequences in the last stage, the end-of-life. Reusing products, with, or without remanufacturing and recycling the materials from products that cannot be reused represent some options analysed in this paper. The end-of-life options should be known even from the beginning of the design process and should be included as design objectives or, at least as constrictions. Considering them as human needs would naturally include them in the requirements list.

  17. Palliative and end-of-life care in South Dakota.

    Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L

    2014-05-01

    Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.

  18. [Precarity, vulnerability, anticipating end-of-life care at home].

    Bonneval, Camille

    2016-02-01

    Many patients want to end their life at home. Care teams adapt to these wishes and organise a form of treatment which blends safety of care and the respect of the expectations of the patients and family members. When factors of precarity increase the vulnerability inherent to the end of life, caregivers anticipate and support as best as they can the difficulties encountered as testified by a hospital at home team in Dax. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  19. Use of Simulation in End-of-Life Care Education.

    Grabow, Debra

    Death and dying encompasses the period when individuals present with a limited prognosis and are near death or have recently died. Using simulation to educate nurses on end-of-life (EOL) care helps focus more on the needs of the learner rather than the patient, and allows the learner to process feelings in preparation for a real experience. Incorporating simulation with a spiritual perspective is essential and needed in EOL nursing care.

  20. A relational ethical approach to end-of-life delirium.

    Wright, David Kenneth; Brajtman, Susan; Macdonald, Mary Ellen

    2014-08-01

    Delirium is a condition of acute onset and fluctuating course in which a person's level of consciousness and cognition become disturbed. Delirium is a common and distressing phenomenon in end-of-life care, yet it is underrecognized and undertreated. In this article, we review qualitative descriptions of the delirium experience in end-of-life care, found through a systematic search of academic databases, to generate insight into the intersubjective nature of the delirium experience. Our analysis of retrieved studies advances an understanding of the relational ethical dimensions of this phenomenon, that is, how delirium is lived by patients, families, and health care providers and how it affects the relationships and values at stake. We propose three themes that explain the distressing nature of delirium in palliative care: 1) experiences of relational tension; 2) challenges in recognizing the delirious person; and 3) struggles to interpret the meaning of delirious behaviors. By approaching end-of-life delirium from a perspective of relational ethics, attention is focused on the implications for the therapeutic relationship with patients and families when delirium becomes part of the dying trajectory. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  1. Spiritual distress of military veterans at the end of life.

    Chang, Bei-Hung; Stein, Nathan R; Skarf, Lara M

    2015-06-01

    Although combat experiences can have a profound impact on individuals' spirituality, there is a dearth of research in this area. Our recent study indicates that one unique spiritual need of veterans who are at the end of life is to resolve distress caused by combat-related events that conflict with their personal beliefs. This study sought to gain an understanding of chaplains' perspectives on this type of spiritual need, as well as the spiritual care that chaplains provide to help veterans ease this distress. We individually interviewed five chaplains who have provided spiritual care to veterans at the end of life in a Veterans Administration hospital. The interviews were recorded, transcribed, and analyzed based on "grounded theory." Chaplains reported that they frequently encounter veterans at the end of life who are still suffering from thoughts or images of events that occurred during their military career. Although some veterans are hesitant to discuss their experiences, chaplains reported that they have had some success with helping the veterans to open up. Additionally, chaplains reported using both religious (e.g., confessing sins) and nonreligious approaches (e.g., recording military experience) to help veterans to heal. Our pilot study provides some insight into the spiritual distress that many military veterans may be experiencing, as well as methods that a chaplain can employ to help these veterans. Further studies are needed to confirm our findings and to examine the value of integrating the chaplain service into mental health care for veterans.

  2. The significance of end-of-life dreams and visions.

    Grant, Pei; Wright, Scott; Depner, Rachel; Luczkiewicz, Debra

    End-of-life dreams and visions (ELDVs) have been well documented through history and across cultures. They appear to affect both dying people and their families deeply, and may be a source of profound meaning and comfort. The aims of the study were to; document hospice patients' ELDV experiences over time using a daily survey, examine the content and subjective significance of ELDVs, and relate the prevalence, content and significance of end-of-life experiences over time until death. Patients (n = 66) in a hospice inpatient unit, between January 2011 and July 2012, were interviewed daily. The interview contained closed questions about the content, frequency and level of comfort or distress of dreams and visions. Most participants reported at least one dream or vision and almost half of the dreams and visions occurred during sleep. Nearly all patients reported that their experience felt real. The most common content featured deceased friends and relatives, followed by living friends and relatives. As participants approached death, comforting dreams and visions of the deceased became more prevalent. End-of-life dreams and visions are commonly experienced during dying. These dreams and visions may be a profound source of potential meaning and comfort to the dying.

  3. End-of-life, euthanasia, and assisted suicide: An update on the situation in France.

    Aubry, R

    2016-12-01

    On February 2, 2016, the French parliament adopted legislation creating new rights for the terminally ill. The text modifies and reinforces the rights of patients to end-of-life care and strengthens the status of surrogate decision makers. Under the new regulations, advance directives become legally binding though not unenforceable. Two types of advance directives are distinguished depending on whether the person is suffering or not from a serious illness when drafting them. The attending physician must abide by the patient's advance directives except in three situations: there is a life-threatening emergency; the directives are manifestly inappropriate; the directives are not compatible with the patient's medical condition. There is no time limit on the validity of advance directives. They are to be written in concordance with a model elaborated by the French superior health authority. This model takes into account the person's knowledge (or not) of having a serious illness when drafting his/her advance directives. In all likelihood, physicians will be called upon to help patients elaborate their advance directives. The law also has a provision for a national registry - potentially the shared medical file - to be designed as a reference source to facilitate storage, accessibility and safety of advance directives. The law introduces the right to continuous deep sedation until death in three specific situations: (i) at the patient's request when the short-term prognosis is death and continuous deep sedation is the only alternative for relieving the patient's suffering or one or more otherwise uncontrollable symptoms; (ii) at the patient's request when the patient chooses to withdraw artificial life-sustaining treatment and such withdrawal would be rapidly life-shortening and susceptible to cause unbearable suffering; (iii) when the patient is unable to express his/her wishes and the collegiate medical decision is to withdraw aggressive futile life

  4. Facing death, gazing inward: end-of-life and the transformation of clinical subjectivity in Thailand.

    Stonington, Scott

    2011-06-01

    In this article, I describe a new form of clinical subjectivity in Thailand, emerging out of public debate over medical care at the end of life. Following the controversial high-tech death of the famous Buddhist monk Buddhadasa, many began to denounce modern death as falling prey to social ills in Thai society, such as consumerism, technology-worship, and the desire to escape the realities of existence. As a result, governmental and non-governmental organizations have begun to focus on the end-of-life as a locus for transforming Thai society. Moving beyond the classic outward focus of the medical gaze, they have begun teaching clinicians and patients to gaze inward instead, to use the suffering inherent in medicine and illness to face the nature of existence and attain inner wisdom. In this article, I describe the emergence of this new gaze and its major conceptual components, including a novel idea of what it means to be 'human,' as well as a series of technologies used to craft this humanity: confession, "facing suffering," and untying "knots" in the heart. I also describe how this new subjectivity has begun to change the long-stable Buddhist concept of death as taking place at a moment in time, giving way for a new concept of "end-of-life," an elongated interval to be experienced, studied, and used for inner wisdom.

  5. Residential aged care residents and components of end of life care in an Australian hospital.

    Leong, Laurence Jee Peng; Crawford, Gregory Brian

    2018-06-09

    With ageing of Australians, the numbers of residential aged care (RAC) residents is rising. This places a spotlight on decisions about appropriate care for this population, including hospitalisation and end-of-life (EOL) care. The aim was to study a sample of RAC residents who attended and died in hospital, to quantify measurable components of EOL care so as to describe the extent of palliative care required. A retrospective case-note review of hospital records was conducted in Adelaide, Australia. Participants were 109 RAC residents who attended from July 2013 to June 2014 and died in hospital. Measurements were advance care planning, health care input from the RAC facilities to hospital and components of EOL care. Residents with and without advanced dementia were compared. Advance care directives (ACDs) were present from 11 to 50%, and advance care plans (ACPs) at 60%. There were more ACPs, resuscitation orders (for/against) and do-not-hospitalise orders in residents with advanced dementia than those without. General practitioner (GP) and extended care paramedic (ECP) input on decisions for hospital transfer were 30% and 1 %. Mean hospital stay to death was 5.2 days. For residents admitted under non-palliative care teams, specialist palliative care (SPC) was needed for phone advice in 5%, consultation in 45%, transfer to palliative care unit in 37%, and takeover by SPC team in 19%. Mean number of documented goals-of-care discussions with family/caregiver was 1.7. In the last 3 days of life, the mean daily number of doses of EOL medications was 4.2. Continuous subcutaneous infusion was commenced in 35%. Staff in RAC need to be adequately resourced to make complex decisions about whether to transfer to hospital. RAC nurses are mainly making these decisions as GP and ECP input were suboptimal. Ways to support nurses and optimise decision-making are needed. Advance care planning can be improved, especially documentation of EOL wishes and hospitalisation orders. By

  6. A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

    Davies, Nathan; Mathew, Rammya; Wilcock, Jane; Manthorpe, Jill; Sampson, Elizabeth L; Lamahewa, Kethakie; Iliffe, Steve

    2016-08-02

    The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia. An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice. Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting

  7. Hospice family members’ perceptions and experiences with end-of-life care in the nursing home

    Washington, Karla; Kruse, Robin L.; Albright, David L; Lewis, Alexandria; Demiris, George

    2014-01-01

    Objective Despite the fact that more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had two research questions; 1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared to family members of community dwelling hospice patients? 2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting? Methods This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family member of hospice patients residing in the community. Results Outcome measures for family members of nursing home residents were compared (n=176) with family members of community dwelling hospice patients (n=267). The family members of nursing home residents reported higher quality of life however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for

  8. A Multinational perspective to managing end-of-life electronics

    Herold, M.

    2007-07-01

    This thesis focuses on how multinational electronics manufacturers manage used products in the EU, USA, Japan and China. Managing used or end-of-life products has interesting environmental and commercial implications. Recovering end-of-life products can reduce the environmental effects of disposal, raw material extraction, transport, and production. Whereas the commercial effects include image benefits and savings on raw material costs. Manufacturer involvement in end-of-life management is especially topical in the electronics industry, which is the focus of this thesis. Electronics products, such as TVs and computers, have been targeted with extended producer responsibility (EPR) legislation in different countries across the world. EPR is an environmental policy approach that forces manufacturers to take physical and/or financial responsibility for end-of-life products. The main objective of this dissertation was to increase understanding of how multinational manufacturers manage end-of-life products in the EU, in the USA, and in China and Japan, and the regional and company-specific factors explain their levels of involvement. This study consisted of an inductive 16-case multiple case study. The products and companies included in the study were as follows: Refrigerators (Bosch und Siemens Hausgeraete, Electrolux, Whirlpool); TVs (Samsung, Philips, Hitachi); PCs (Hewlett Packard, NEC, Fujitsu Limited and Fujitsu-Siemens Computers and an anonymous company, Alpha Computers); Mobile phones (Nokia, Motorola, Samsung); Telecommunication network equipment (Nokia, Motorola, Huawei). A manufacturer's level of involvement in end-of-life management can be characterized in terms of the level of organizational capabilities. These capabilities range from none to running a treatment facility and recovering value from own branded products. Levels in between can be characterized by outsourcing end-of-life management to industry-wide schemes, managing contracts for treating

  9. Can the NICE "end-of-life premium" be given a coherent ethical justification?

    Cookson, Richard

    2013-12-01

    In 2009 the UK National Institute for Health and Clinical Excellence (NICE) announced that its health technology appraisal committees would henceforth give special additional weight to health gains from life-extending end-of-life treatments. This was a response to mounting concern from NICE's stakeholders that effective new drugs for end-stage cancer often fail NICE's standard test of cost effectiveness. This change of policy may be justifiable on procedural grounds as the result of a democratic political process responding to stakeholder concerns. However, according to the "accountability for reasonableness" framework proposed by the philosopher Norman Daniels and endorsed by NICE, there also needs to be transparency about the substantive ethical grounds for public health care resource allocation decisions. In that spirit, I analyze eleven potentially relevant justifications for the NICE "end-of-life premium," drawn from the economics and philosophy literature: (1) rule of rescue, (2) fair chances, (3) ex post willingness to pay, (4) caring externality, (5) financial protection, (6) symbolic value, (7) diminishing marginal value of future life years, (8) concentration of benefits, (9) dread, (10) time to set your affairs in order, and (11) severity of illness. I conclude that none of them yields a coherent ethical justification for the NICE end-of-life premium.

  10. Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care.

    Thieleman, Kara J; Wallace, Cara; Cimino, Andrea N; Rueda, Heidi A

    2016-01-01

    The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.

  11. Balancing hope and despair at the end of life: The contribution of organ and tissue donation.

    Walker, Wendy; Sque, Magi

    2016-04-01

    Concern for the grieving family can moderate the intentions of critical care staff to advocate deceased organ and tissue donation. Conversely, benevolent actions may provoke distress through missed opportunities to save or transform lives. This article provides insight into the perceived benefits of organ and tissue donation for grieving families who experienced end-of-life care in the intensive care unit. Data were collected via semistructured, face-to-face or telephone interviews with 43 participants from 31 donor families. Audio recordings were transcribed verbatim and subjected to qualitative content analysis. The study findings affirmed the importance of person-centered end-of-life care. Donor families shared examples of good-quality care and communication that contained the hallmarks of compassion, respect, dignity, and choice. We uncovered a trajectory of hope and despair in which the option of organ and tissue donation appeared to give meaning to the life and death of the deceased person and was comforting to some families in their bereavement. Our study findings underlined the significance of donation decision making for grieving families. Organ and tissue donation has the potential to balance hope and despair at the end of life when the wishes of the dying, deceased, and bereaved are fulfilled. Copyright © 2015 Elsevier Inc. All rights reserved.

  12. Ethics and end of life care: the Liverpool Care Pathway and the Neuberger Review.

    Wrigley, Anthony

    2015-08-01

    The Liverpool Care Pathway for the Dying has recently been the topic of substantial media interest and also been subject to the independent Neuberger Review. This review has identified clear failings in some areas of care and recommended the Liverpool Care Pathway be phased out. I argue that while the evidence gathered of poor incidences of practice by the Review is of genuine concern for end of life care, the inferences drawn from this evidence are inconsistent with the causes for the concern. Seeking to end an approach that is widely seen as best practice and which can genuinely deliver high quality care because of negative impressions that have been formed from failing to implement it properly is not a good basis for radically overhauling our approach to end of life care. I conclude that improvements in training, communication and ethical decision-making, without the added demand to end the Liverpool Care Pathway, would have resulted in a genuine advance in end of life care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  13. Privacy at end of life in ICU: A review of the literature.

    Timmins, Fiona; Parissopoulos, Stelios; Plakas, Sotirios; Naughton, Margaret T; de Vries, Jan Ma; Fouka, Georgia

    2018-06-01

    To explore the issues surrounding privacy during death in ICU. While the provision of ICU care is vital, the nature and effect of the potential lack of privacy during death and dying in ICUs have not been extensively explored. A literature search using CINAHL and Pubmed revealed articles related to privacy, death and dying in ICU. Keywords used in the search were "ICU," "Privacy," "Death" and "Dying." A combination of these terms using Boolean operators "or" or "and" revealed a total of 23 citations. Six papers were ultimately deemed suitable for inclusion in the review and were subjected to code analysis with Atlas.ti v8 QDA software. The analysis of the studies revealed eight themes, and this study presents the three key themes that were found to be recurring and strongly interconnected to the experience of privacy and death in ICU: "Privacy in ICU," "ICU environment" and "End-of-Life Care". Research has shown that patient and family privacy during the ICU hospitalisation and the provision of the circumstances that lead to an environment of privacy during and after death remains a significant challenge for ICU nurses. Family members have little or no privacy in shared room and cramped waiting rooms, while they wish to be better informed and involved in end-of-life decisions. Hence, death and dying for many patients takes place in open and/or shared spaces which is problematic in terms of both the level of privacy and respect that death ought to afford. It is best if end-of-life care in the ICU is planned and coordinated, where possible. Nurses need to become more self-reflective and aware in relation to end-of-life situations in ICU in order to develop privacy practices that are responsive to family and patient needs. © 2018 John Wiley & Sons Ltd.

  14. Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol.

    Bergstraesser, Eva; Zimmermann, Karin; Eskola, Katri; Luck, Patricia; Ramelet, Anne-Sylvie; Cignacco, Eva

    2015-08-01

    To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs. ClinicalTrials.gov Identifier: NCT01983852. © 2015 John Wiley & Sons Ltd.

  15. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia.

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-05-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively 'dead'. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma's position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death. Copyright: © Singapore Medical Association.

  16. Institutional disposition and management of end-of-life electronics.

    Babbitt, Callie W; Williams, Eric; Kahhat, Ramzy

    2011-06-15

    Institutions both public and private face a challenge to develop policies to manage purchase, use, and disposal of electronics. Environmental considerations play an increasing role in addition to traditional factors of cost, performance and security. Characterizing current disposition practices for end-of-life electronics is a key step in developing policies that prevent negative environmental and health impacts while maximizing potential for positive social and economic benefits though reuse. To provide a baseline, we develop the first characterization of quantity, value, disposition, and flows of end-of-life electronics at a major U.S. educational institution. Results of the empirical study indicate that most end-of-first-life electronics were resold through public auction to individuals and small companies who refurbish working equipment for resale or sell unusable products for reclamation of scrap metal. Desktop and laptop computers sold for refurbishing and resale averaged U.S. $20-100 per unit, with computers sold directly to individuals for reuse reaching $250-350 per unit. This detailed assessment was coupled with a benchmarking survey of end-of-life electronics management practices at other U.S. universities. Survey results indicate that while auctions are still commonplace, an increasing number of institutions are responding to environmental concerns by creating partnerships with local recycling and resale entities and mandating domestic recycling. We use the analyses of current disposition practices as input to discuss institutional strategies for managing electronics. One key issue is the tension between benefits of used equipment sales, in terms of income for the institution and increased reuse for society, and the environmental risks because of unknown downstream practices.

  17. Health Care Professional Factors Influencing Shared Medical Decision Making in Korea

    Kae-Hwa Jo

    2015-11-01

    Full Text Available Till date, the medical decision-making process in Korea has followed the paternalist model, relying on the instructions of physicians. However, in recent years, shared decision making at the end-of-life between physicians and nurses is now emphasized in Korea. The purpose of this study was conducted to explore how health care professionals’ characteristics, attitude toward dignified dying, and moral sensitivity affect their shared medical decision making. The design was descriptive survey. This study was undertaken in two university hospitals in two metropolitan cities, South Korea. The participants were 344 nurses and 80 physicians who work at university hospitals selected by convenience sampling method. Data were collected from January 10 through March 20, 2014 using the Dignified Dying Scale, Moral Sensitivity Scale, and Shared Medical Decision-Making Scale. Shared medical decision making, attitude toward dignified dying, moral sensitivity, age, and working experience had a significant correlation with each other. The factors affecting shared medical decision making of Korean health care professionals were moral sensitivity and attitude toward dignified dying. These variables explained 22.4% of the shared medical decision making. Moral sensitivity and a positive attitude toward dignified dying should be promoted among health care professionals as a part of an educational program for shared medical decision making.

  18. Environmental assessment of end-of-life textiles in Denmark

    Koligkioni, Athina; Parajuly, Keshav; Sørensen, Birgitte Lilholt

    2018-01-01

    The European Union is on its way to a circular economy through eco-design, waste prevention, reuse and recycling of products and materials. This study analyzes the environmental effects of end-of-life textile management in Denmark. First, a Mass Flow Analysis was performed for textile flows from...... sales to consumers to end processes, which revealed that absolute consumption has grown significantly over the last years. Data on generation and management of used textiles indicated that around 40% are discarded with residual waste, another 40% are captured by collection for reuse channels, and around...

  19. Recent Analyses of Phenix End of Life Tests and Perspectives

    Fontaine, B.; Martin, L.; Prulhière, G.; Eschbach, R.; Portier, J.-L.; Masoni, P.; Tauveron, N.; Bavière, R.; Verwaerde, D.; Hamy, J.-M.

    2013-01-01

    Conclusion: • End of Life tests performed at PHENIX in 2009 gathered a lot of information concerning thermalhydraulics, core physics and fuel behavior in SFR cores. • The analysis of these tests is still undergoing for some of them, involving international collaborations. • To better understand the measurements, complex models are developed thanks to recent computer science progress: • thermalhydraulics: coupling CFD and system codes neutronics: - perturbation theory applied to Bateman equations - model of distorted core; • mechanics: fluid-structure interaction. The test results allow to validate these developments, which could be applied in the future for new SFR design

  20. End-of-life content in treatment guidelines for life-limiting diseases.

    Mast, Kimberly R; Salama, Marybeth; Silverman, Gabriel K; Arnold, Robert M

    2004-12-01

    Clinical guidelines are systematically developed statements that influence medical practice, education, and funding. Guidelines represent the consensus of leaders, often based on systematic reviews of the literature, regarding the "state of the art." To assess the degree to which end-of-life care is integrated into nationally developed guidelines for chronic, noncurable, life-limiting diseases. Four compendia were reviewed: The Healthcare Standards Directory ECRI, 2001; the Clinical Practice Guidelines Directory, 2000 edition; the National Guidelines Clearinghouse, (guideline.gov); and the National Library of Medicine's MEDLINE database on the OVID platform for guidelines on nine chronic diseases (chronic obstructive pulmonary disease, end-stage liver disease, amyotrophic lateral sclerosis, congestive heart failure, dementia, cerebrovascular accident, end-stage renal disease, cancer [breast, colon, prostate, lung], and human immunodeficiency virus). They were assessed by two reviewers for end-of-life content in 15 domains (e.g., epidemiology of death, symptom management, spiritual, family roles, and settings of care), the presence of eight specific terms dealing with palliative care, integration of palliative care information into the guideline, and descriptive variables. Not available. Each guideline was examined and rated on a 0-2 scale (0, absent content; 1, minimal content; 2, helpful content) using 15 end-of-life content domains. Scores from domains were summed and classified into 3 categories: 4 or less, minimal; 5-12, moderate; and more than 12, significant content. Ten percent of guidelines had significant palliative care content, 64% had minimal content, and 26% had moderate content. The least addressed domains dealt with spirituality, ethics, advocacy and family roles. When guidelines that dealt solely with prevention, acute exacerbations or complications of an illness, or specific treatment modalities were excluded 28% and 16% of these general guidelines

  1. Moral distress in end-of-life care in the intensive care unit.

    St Ledger, Una; Begley, Ann; Reid, Joanne; Prior, Lindsay; McAuley, Danny; Blackwood, Bronagh

    2013-08-01

    To explore moral distress in relatives doctors and nurses, in end-of-life care decision-making, in the adult intensive care unit. Many deaths in intensive care involve decisions about withholding and withdrawing therapy, potentially triggering moral distress. Moral distress occurs when individuals feel constrained from acting in accordance with moral choice, or act against moral judgement, generating painful, unresolved emotions, and problems that continue long after an event. Prior research has focused mainly on nurses; less is known about doctors' experiences and occurrence and impact on relatives is unknown. A narrative inquiry case study approach, funded by a Northern Ireland Health and Social Care Doctorate Fellowship Award (April 2011). In-depth digitally recorded interviews will be conducted with relatives, doctors, and nurses involved in end-of-life cases comprising: (1) withdrawal of therapy, including circulatory death organ donation; (2) non-escalation of therapy; and (3) brain stem death with a request for organ donation. Relatives will be offered the opportunity to share their experiences on 'Healthtalkonline' by copyrighting audio-visual interviews to the Health Experiences Research Group, Oxford University. Research Ethics Committee approval was obtained (April 2012). This is the first time that moral distress is explored, in a case approach, among relatives, doctors, and nurses intimately involved in end-of-life decisions in intensive care. Dissemination of findings will make a large contribution to international knowledge and understanding in this area and alert healthcare professionals and relatives to an otherwise under-recognized, but potentially detrimental, experience. Findings will inform education, practice, and policy. © 2012 Blackwell Publishing Ltd.

  2. Culture and end of life care: a scoping exercise in seven European countries.

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Andrew, Erin; Toscani, Franco; Finetti, Sylvia; Pasman, H Roeline; Higginson, Irene; Harding, Richard; Pool, Robert

    2012-01-01

    Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

  3. Culture and End of Life Care: A Scoping Exercise in Seven European Countries

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Andrew, Erin; Toscani, Franco; Finetti, Sylvia; Pasman, H. Roeline; Higginson, Irene; Harding, Richard; Pool, Robert

    2012-01-01

    Aim Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. Methods We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. Results A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. Conclusion This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of Eo

  4. Culture and end of life care: a scoping exercise in seven European countries.

    Marjolein Gysels

    Full Text Available AIM: Culture is becoming increasingly important in relation to end of life (EoL care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. METHODS: We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. RESULTS: A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries. The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. CONCLUSION: This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for

  5. What Is the End of Life Period? Trajectories and Characterization Based on Primary Caregiver Reports.

    Cohen-Mansfield, Jiska; Cohen, Rinat; Skornick-Bouchbinder, Michal; Brill, Shai

    2018-04-17

    As the population lives longer, end of life (EOL) is emerging as a distinct life phase, about which there is still limited understanding. Characterizing this important period is vital for clarifying issues regarding trajectory and decline at EOL and for health service planning on an institutional, communal, and societal level. In this article, we aim to characterize the EOL period, examining the duration and number of EOL stages, as well as functional, attitudinal, and emotional trajectories. In this cross-sectional study, 70 primary caregivers of deceased persons were interviewed. Standardized rates of functional, attitudinal, and emotional change across the EOL period were calculated. Frequencies were compared using the McNemar statistical test. EOL period was found to have a median length of 3.25 years, and an average of approximately three progressive stages. The duration of EOL stages tended to decrease as death approached. Unexpected events (eg new medical diagnosis/accident) served as the precipitating event for the EOL period for approximately half of the deceased persons, and changes in existing conditions (eg health status/cognitive state) were also reported to precipitate EOL for a similar proportion. Reports of functionality across stages found the steepest decline in the "physical" domain and the most moderate decline in the "social" domain. With each stage, positive indicators, such as "will to live," showed a progressive decline, whereas negative indicators, including "suffering" and "dependence level," progressively increased. Results help characterize EOL trajectories and should inform care planning and decision making at various levels. In addition, they suggest a methodology for better understanding EOL.

  6. End-of-life issues as perceived by Lebanese judges.

    Adib, Salim M; Kawas, Sami H; Hajjar, Theresa A

    2003-05-01

    to assess the attitudes of judges in Beirut, Lebanon, regarding end-of-life issues such as assisted suicide and withholding or withdrawing life-sustaining treatment. 85% of all currently acting and in-training judges and public prosecutors in Beirut (N=135) were surveyed using a mailed questionnaire that assessed attitudes toward intervention in five hypothetical cases. The associations of attitudes, on a scale from least to most 'sympathetic' toward assisting those who desire to end their lives, were measured by a variety of personal, social and professional variables. younger individuals, and those who have not yet been formally appointed as judges, were significantly more sympathetic to withdrawal or withholding of life-sustaining devices when patients or their proxies requested it, and more in support of assisted suicide. Gender, religious denomination, religious practice, and personal experience with prolonged illness leading to death among close friends or family, were generally not significant predictors of respondents' attitudes. Years of experience as a judge correlated strongly with age and may have contributed to its predictive effect. a relatively more sympathetic attitude among younger judges, many of them women, and among trainees, may reflect a historical evolution in younger age-groups in Lebanon today. A survey of opinions in the public may help reach a more conclusive understanding in this regard. In any case, judges in Lebanon will remain important partners in the debate, as they will continue to be the final interpreters of the letter of the law in end-of-life issues.

  7. Balancing dual roles in end-of-life research.

    Martin, Wanda; Grey, Meredith; Webber, Terry; Robinson, Linnea; Hartt, Nancy; Cairns, Moira; Stajduhar, Kelli

    2007-01-01

    Ethical and practical issues are sure to arise from the majority of research studies done with palliative populations. Whether it is feeling opportunistic, being emotionally available, or struggling with witnessing a gap in service and needs of the participants receiving care, nurses involved in research find a way to balance both roles to meet the needs of the participants as well as the study (McIlfatrick, Sullivan, & McKenna, 2006). This paper highlights some of the practical and ethical issues that arise when frontline nurses also take on the role of research assistant for studies with palliative populations. Specifically, the authors highlight their personal experiences based on their research assistant work on a study examining family caregiver coping in end-of-life cancer care. The authors discuss the "balancing act" of taking on these dual roles and offer recommendations on how to be with and approach people when doing research at the end of life using a framework based on Swanson's Theory of Caring (1991).

  8. [Vulnerations of Human Dignity At The End of Life].

    Germán Zurriaráin, Roberto

    2017-01-01

    Death is constitutive of human nature and therefore it must happen naturally. But there are mainly two ways that falsify it: euthanasia and therapeutic obstinacy. Two wrong choices that do not accept the human reality of death (the first, anticipates death and the second, delays it). From the philosophical and ethical point of view, both options are rejected, because they are against human dignity at the end of life. Aside from these, this article also rejects the different names which are given to refer to euthanasia, that also go against human nature at the end of life. On the other hand, do not confuse euthanasia with sedation. Both have a common goal to prevent the patient from feeling pain and suffering. To achieve this goal, both options administer ″drugs″ to the patient. But in the administration of drugs in euthanasia involves ending patient's life. The administration of drugs in sedation aims for the patient's death to occur naturally. Finally, we briefly discuss the basic care necessary in these situations. The absence of basic care cannot become a covert euthanasia. The patient must die from his/her illness, never from a lack of care. All human actions (euthanasia, sedation, therapeutic obstinacy and basic care) should be an expression and manifestation of what human dignity demands. Such dignity is expressed in the actions performed by human beings.

  9. Working with Russian-Jewish immigrants in end-of-life care settings.

    Newhouse, Leonid

    2013-01-01

    This article examines Russian-Jewish immigrant clients' attitudes toward death and dying in the context of today's health care system. Aspects of individuals' collective past--such as the traumatic history of their country of origin; cultural prohibitions against discussing pain, suffering, and death; and the lack of familiarity with palliative care that are likely to affect their decisions about end-of-life care--are discussed. Case vignettes are provided, with a discussion on how best to engage these clients in therapeutic work.

  10. Framing Effects on End-of-Life Preferences Among Latino Elders.

    Vélez Ortiz, Daniel; Martinez, Rubén O; Espino, David V

    2015-01-01

    This study compared how the presentation of end-of-life (EOL) choices influences responses by Latino and White older adults relative to resuscitation preferences. The authors apply prospect theory, which deals with decision making based on how choices are framed. Participants were presented with differently ordered questions framing a resuscitation scenario and asked to rate their preferences. Results show that Latino participants were significantly influenced by the framing order of treatment options with regard to resuscitation while Whites were not. Health professionals need to be aware that the ways they present EOL options are likely to affect the choices of Latino older adults. Further research is needed with Latino subgroups.

  11. Multi-Cultural Long Term Care Nurses’ Perceptions of Factors Influencing Patient Dignity at the End of Life

    Periyakoil, Vyjeyanthi S.; Stevens, Marguerite; Kraemer, Helena

    2012-01-01

    The goal of this mixed-methods study was to characterize the perceptions of multi-cultural long-term care nurses about patient dignity at the end-of-life (EOL). The study was conducted in a large, urban long-term care (LTC) facility. The participants were forty-five long-term care nurses and 26 terminally ill nursing home patients. Nurses completed an open-ended interview about their perceptions of the concept of dying with dignity and the data were analyzed using grounded theory methods. Main themes identified as promoting patient dignity at the EOL included treating them with respect, helping them prepare for their EOL, promoting shared decision making and providing high quality tenor of care. The nurses’ cultural and religious backgrounds influenced their perceptions of what constitutes dignity-conserving care. Foreign-born nurses stressed the need for end-of-life rituals but this was strikingly absent in the statements of US-born nurses. Foreign-born Catholic nurses stated that the dying experience should not be altered using analgesics to relieve suffering or by attempts to hasten death by forgoing curative therapy or by other means. Both nurses and terminally ill patients completed the Dignity Card-sort Tool (DCT). A comparison of the LTC nurses cohort to the terminally ill patient responses on the DCT revealed that the nurses felt that patient dignity was eroded when her/his wishes were not carried out and when s/he is treated without respect. In contrast, dying LTC patients felt that poor medical care and loss of ability to choose care options to be the most important factors leading to erosion of dignity. PMID:23496266

  12. Intensity of treatment in Swiss cancer patients at the end-of-life

    Bähler C

    2018-03-01

    Full Text Available Caroline Bähler,1 Andri Signorell,1 Eva Blozik,1,2 Oliver Reich1 1Department of Health Sciences, Helsana Insurance Group, Zürich, Switzerland; 2Department of Medicine, University Medical Centre Freiburg, Freiburg im Breisgau, Germany Purpose: Current evidence on the care-delivering process and the intensity of treatment at the end-of-life of cancer patients is limited and remains unclear. Our objective was to examine the care-delivering processes in health care during the last months of life with real-life data of Swiss cancer patients. Patients and methods: The study population consisted of adult decedents in 2014 who were insured at Helsana Group. Data on the final cause of death were provided additionally by the Swiss Federal Statistical Office. Of the 10,275 decedents, 2,710 (26.4% died of cancer. Intensity of treatment and health care utilization (including transitions at their end-of-life were examined. Intensity measures included the following: last dose of chemotherapy within 14 days of death, a new chemotherapy regimen starting <30 days before death, more than one hospital admission or spending >14 days in hospital in the last month, death in an acute care hospital, more than one emergency visit and ≥1 intensive care unit admission in the last month of life. Results: In the last 6 months of life, 89.5% of cancer patients had ≥1 transition, with 87.2% being hospitalized. Within 30 days before death, 64.2% of the decedents had ≥1 intensive treatment, whereby 8.9% started a new chemotherapy. In the multinomial logistic regression model, older age, higher density of nursing home beds and home care nurses were associated with a decrease, while living in the Italian- or French-speaking part of Switzerland was associated with an increase in intensive care. Conclusion: Swiss cancer patients insured by Helsana Group experience a considerable number of transitions and intensive treatments at the end-of-life, whereby treatment intensity

  13. End-of-life ethical dilemmas in intensive care unit

    Štefan Grosek

    2013-10-01

    Full Text Available Sustaining vital functions in critically ill in the ICU frequently allows prolongation of patient’s life even in circumstances where the treatment has lost its medical rationale and/or there is no hope for the patient’s condition to improve. Decision-making about termination of such treatment – usually referred to as futile, useless or inappropriate –, frequently presents a difficult ethical dilemma not only for the intensivists and other health-care workers but also for the patients and their relatives. The principles of biomedical ethics present a useful framework for decision-making in ethical dilemmas but cannot offer sufficiently explicit guidelines. Besides, the concepts of futility or futile treatment in the ICU are also not unequivocally defined. Thus, the decision regarding continuing or stopping treatment should be based on careful evaluation of the balance between its expected efficiency and benefits on the one hand and the burden imposed upon the patient on the other. If the burden clearly exceeds the expected benefits, the ethically sound decision is to terminate such treatment.

  14. [End-of-Life Care in Intensive Care Units: Nursing strategies of family involvement at the end of life].

    Cyrol, Katharina; Fröhlich, Martin R; Piatti, Francesca; Imhof, Lorenz

    2018-06-01

    Background: Family members of people dying in the intensive care unit (ICU) are exposed to many stress factors and they often do not experience involvement in End-of-Life (EoL) situations. For example, they criticize a low degree of participation in patients care, delayed or incomplete information and lack of privacy. Even nursing staff is facing various obstacles in EoL situations in ICUs. Aim: This study investigates strategies used by ICU nursing staff in German-speaking Switzerland to increase family members participation in situations at the end of life. Method: Data was collected by conducting 12 semi-structured interviews using an approach based on Grounded Theory. A model was developed to explain nursing strategies for family involvement in EoL situations in the ICU. Conclusions: Nurses provide personal space and tranquillity for family members and allow them to be present at any time. Against this background, they support family members and enable them to say goodbye consciously to a loved one. Subsequent work should examine the effectiveness of the strategies described, particularly in terms of stress reactions displayed by family members in the aftermath of EoL situations. In practice, family members should be provided space for privacy. The entire healthcare team is recommended to identify and pursue common values and objectives. Moreover, intradisciplinary exchange and mentoring need to be encouraged. In order to prepare future nursing staff for EoL situations in the ICU, recognizing and promoting their educational skills is mandatory.

  15. Palliative Care and the Humanities: Centralizing the Patient at the End of Life.

    Franke, Richard J

    2016-03-01

    Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike.

  16. Educational interventions to train healthcare professionals in end-of-life communication: a systematic review and meta-analysis.

    Chung, Han-Oh; Oczkowski, Simon J W; Hanvey, Louise; Mbuagbaw, Lawrence; You, John J

    2016-04-29

    Practicing healthcare professionals and graduates exiting training programs are often ill-equipped to facilitate important discussions about end-of-life care with patients and their families. We conducted a systematic review to evaluate the effectiveness of educational interventions aimed at providing healthcare professionals with training in end-of-life communication skills, compared to usual curriculum. We searched MEDLINE, Embase, CINAHL, ERIC and the Cochrane Central Register of Controlled Trials from the date of inception to July 2014 for randomized control trials (RCT) and prospective observational studies of educational training interventions to train healthcare professionals in end-of-life communication skills. To be eligible, interventions had to provide communication skills training related to end-of-life decision making; other interventions (e.g. breaking bad news, providing palliation) were excluded. Our primary outcomes were self-efficacy, knowledge and end-of-life communication scores with standardized patient encounters. Sufficiently similar studies were pooled in a meta-analysis. The quality of evidence was assessed using GRADE. Of 5727 candidate articles, 20 studies (6 RCTs, 14 Observational) were included in this review. Compared to usual teaching, educational interventions to train healthcare professionals in end-of-life communication skills were associated with greater self-efficacy (8 studies, standardized mean difference [SMD] 0.57;95% confidence interval [CI] 0.40-0.75; P communication scores (8 studies, SMD 0.69; 95% CI 0.41-0.96; p communication training may improve healthcare professionals' self-efficacy, knowledge, and EoL communication scores compared to usual teaching. Further studies comparing two active educational interventions are recommended with a continued focus on contextually relevant high-level outcomes. PROSPERO CRD42014012913.

  17. Spirituality in cancer care at the end of life.

    Ferrell, Betty; Otis-Green, Shirley; Economou, Denice

    2013-01-01

    There is a compelling need to integrate spirituality into the provision of quality palliative care by oncology professionals. Patients and families report the importance of spiritual, existential, and religious concerns throughout the cancer trajectory. Leading palliative care organizations have developed guidelines that define spiritual care and offer recommendations to guide the delivery of spiritual services. There is growing recognition that all team members require the skills to provide generalist spiritual support. Attention to person-centered, family-focused oncology care requires the development of a health care environment that is prepared to support the religious, spiritual, and cultural practices preferred by patients and their families. These existential concerns become especially critical at end of life and following the death for family survivors. Oncology professionals require education to prepare them to appropriately screen, assess, refer, and/or intervene for spiritual distress.

  18. End-of-life resource recovery from emerging electronic products

    Parajuly, Keshav; Habib, Komal; Cimpan, Ciprian

    2016-01-01

    Integrating product design with appropriate end-of-life (EoL) processing is widely recognized to have huge potentials in improving resource recovery from electronic products. In this study, we investigate both the product characteristics and EoL processing of robotic vacuum cleaner (RVC), as a case...... of emerging electronic product, in order to understand the recovery fate of different materials and its linkage to product design. Ten different brands of RVC were dismantled and their material composition and design profiles were studied. Another 125 RVCs (349 kg) were used for an experimental trial...... at a conventional ‘shred-and-separate’ type preprocessing plant in Denmark. A detailed material flow analysis was performed throughout the recycling chain. The results show a mismatch between product design and EoL processing, and the lack of practical implementation of ‘Design for EoL’ thinking. In the best...

  19. Examining End-of-Life Case Management: Systematic Review

    Roger E. Thomas

    2014-01-01

    Full Text Available Case management was initiated in the 1970s to reduce care discontinuity. A literature review focused on end-of-life (EOL case management identified 17 research articles, with content analysis revealing two themes: (a seeking to determine or establish the value of EOL case management and (b identifying ways to improve EOL case management. The evidence, although limited, suggests that EOL case management is helpful to dying individuals and their families. Research is needed to more clearly illustrate its usefulness or outcomes and the extent of need for it and actual availability. Among other benefits, EOL case management may help reduce hospital utilization, a major concern with the high cost of hospital-based care and the increased desire for home-based EOL care.

  20. International Space Station End-of-Life Probabilistic Risk Assessment

    Duncan, Gary W.

    2014-01-01

    The International Space Station (ISS) end-of-life (EOL) cycle is currently scheduled for 2020, although there are ongoing efforts to extend ISS life cycle through 2028. The EOL for the ISS will require deorbiting the ISS. This will be the largest manmade object ever to be de-orbited therefore safely deorbiting the station will be a very complex problem. This process is being planned by NASA and its international partners. Numerous factors will need to be considered to accomplish this such as target corridors, orbits, altitude, drag, maneuvering capabilities etc. The ISS EOL Probabilistic Risk Assessment (PRA) will play a part in this process by estimating the reliability of the hardware supplying the maneuvering capabilities. The PRA will model the probability of failure of the systems supplying and controlling the thrust needed to aid in the de-orbit maneuvering.

  1. Satellite end of life constraints: Technical and organisational solutions

    Cabrières, Bernard; Alby, Fernand; Cazaux, Christian

    2012-04-01

    Since 1974 with the radiocommunication satellite Symphony1, CNES launched and operated 11 GEO and 20 LEO satellites. During those 36 years, both flight segment and ground segment dramatically evolved and operational organisations and techniques equally improved. At the present time, CNES operates 1 GEO satellite and 17 LEO satellites with not much more people and costs than in 1986 when its first Satellite Operation Direction in Toulouse was only in charge of Telecom1A, Telecom1B and Spot1. This fantastic technical evolution combined with the huge increase of services to citizens and governments given by Space systems was unfortunately also associated with an enormous growth of space pollution by debris of all sizes. From the beginning, CNES was a major actor of the international effort to promote regulations in order to try to reduce or at least control this problematic situation. Internally, CNES, not only set up an operational on-call service to deal with collision risks, but decided to do its best to apply the new guidelines to the end of life of satellites under its responsibility even for those developed and launched a very long time ago. For instance, that was the case in 2009 for the reorbitation of the GEO satellite Telecom 2C (launched in 1995) and for the deorbitation of the LEO satellite Spot2 (launched in 1990). In addition, CNES prepares procedures to be able to be as exemplary as possible for its other spacecrafts whose end of life approaches. The constraints and challenges to face in order to cope with these new requirements are multiple: choice of final orbit, realistic calculation of re-entry duration, estimation of residual propellant, electric passivation, management of explosion risks… All these studies and operational experience gained will be helpful for the new role of CNES, which recently became in charge of controlling space operators in the frame of the new French space law on space operations.

  2. Use of opioids and sedatives at End-of-Life

    Shin Wei Sim

    2014-01-01

    Full Text Available Despite their proven efficacy and safety, opioid and sedative use for palliation in patients afflicted with cancer in Singapore have been shown to be a fraction of that in other countries. This paper explores the various psychosocial and system-related factors that appear to propagate this conservative approach to care in what is largely a western-influenced care practice. A search for publications relating to sedative and opioid usage in Asia was performed on PubMed, Google, Google Scholar, World Health Organization, and Singapore′s government agency websites using search terms such as "opioids," "sedatives," "palliation," "end-of-life-care," "pain management," "palliative care," "cancer pain," "Asia," "Singapore," and "morphine." Findings were classified into three broad groups - system-related, physician-related, and patient-related factors. A cautious medico-legal climate, shortage of physicians trained in palliative care, and lack of instruments for symptom assessment of patients at the end of life contribute to system-related barriers. Physician-related barriers include delayed access to palliative care due to late referrals, knowledge deficits in non-palliative medicine physicians, and sub-optimal care provided by palliative physicians. Patients′ under-reporting of symptoms and fear of addiction, tolerance, and side effects of opioids and sedatives may lead to conservative opioid use in palliative care as well. System-related, physician-related, and patient-related factors play crucial roles in steering the management of palliative patients. Addressing and increasing the awareness of these factors may help ensure patients receive adequate relief and control of distressing symptoms.

  3. Occupational Variation in End-of-Life Care Intensity.

    Hyder, Joseph A; Haring, R Sterling; Sturgeon, Daniel; Gazarian, Priscilla K; Jiang, Wei; Cooper, Zara; Lipsitz, Stuart R; Prigerson, Holly G; Weissman, Joel S

    2018-03-01

    End-of-life (EOL) care intensity is known to vary by secular and geographic patterns. US physicians receive less aggressive EOL care than the general population, presumably the result of preferences shaped by work-place experience with EOL care. We investigated occupation as a source of variation in EOL care intensity. Across 4 states, we identified 660 599, nonhealth maintenance organization Medicare beneficiaries aged ≥66 years who died between 2004 and 2011. Linking death certificates, we identified beneficiaries with prespecified occupations: nurses, farmers, clergy, mortuary workers, homemakers, first-responders, veterinary workers, teachers, accountants, and the general population. End-of-life care intensity over the last 6 months of life was assessed using 5 validated measures: (1) Medicare expenditures, rates of (2) hospice, (3) surgery, (4) intensive care, and (5) in-hospital death. Occupation was a source of large variation in EOL care intensity across all measures, before and after adjustment for sex, education, age-adjusted Charlson Comorbidity Index, race/ethnicity, and hospital referral region. For example, absolute and relative adjusted differences in expenditures were US$9991 and 42% of population mean expenditure ( P EOL care intensity measures, teachers (5 of 5), homemakers (4 of 5), farmers (4 of 5), and clergy (3 of 5) demonstrated significantly less aggressive care. Mortuary workers had lower EOL care intensity (4 of 5) but small numbers limited statistical significance. Occupations with likely exposure to child development, death/bereavement, and naturalistic influences demonstrated lower EOL care intensity. These findings may inform patients and clinicians navigating choices around individual EOL care preferences.

  4. Framework of Uncertainty in Medical Decision Making

    Austin, L; Brodersen, John; Reventlow, Susanne

    Historically, medical decisions have primarily involved diagnosis and treatment of symptomatic patients. Increasingly, medical decisions concern uncertain future health states in asymptomatic people. We construct a taxonomy of five medical decision situations that encompasses these wider...... possibilities. For each, we identify potential sources of uncertainty that should be considered when assessing the degree of belief that a person has, or will have, a condition. Decision trees illustrate the normative structure of each situation. The five decision situations involve: 1) assessing...

  5. [End-of-life care in a Spanish Pediatric Intensive Care Unit: staff and parental evaluation].

    Tagarro García, A; Dorao Martínez-Romillo, P; Moraleda, S; López, P; Moreno, T; San-José, B; Martínez Biarge, M; Tapia Moreno, R; Ruza-Tarrío, F

    2008-04-01

    To evaluate end-of-life care in a Paediatric Intensive Care Unit (PICU). Retrospective study developed in a PICU. 41 workers from the PICU and parents of 26 deceased children (from 2001 to 2005). A questionnaire was designed to investigate end-of-life care. An age parents were with their children at the time of death; 64 % of all parents consider this "positive", and 13 % consider it "negative". Forty per cent of staff stated that it is "positive" for parents to be by the side of their child at the time of death, and 52 % do not know. Seventy-three per cent of staff, but only 29 % of parents want further professional psychological support for parents. Twenty per cent of children died following withdrawal of life support. The most important factors for this decision were the possibility of survival and quality of life. The majority (73 %) of caregivers express the view that often, this decision should be taken earlier. Analysis of staff opinions underlines the importance of the way news is communicated, the timing of withdrawal of life support, and the need for psychological support. Parents emphasized the role of the family during time spent in a PICU and during the last moments.

  6. Enhancing student communication during end-of-life care: A pilot study.

    Bloomfield, Jacqueline G; O'Neill, Bernadette; Gillett, Karen

    2015-12-01

    Quality end-of-life care requires effective communication skills, yet medical and nursing students report limited opportunities to develop these skills, and that they lack confidence and the related competence. Our purpose was to design, implement, and evaluate an educational intervention employing simulated patient actors to enhance students' abilities to communicate with dying patients and their families. A study employing a mixed-methods design was conducted with prequalification nursing and medical students recruited from a London university. The first phase involved focus groups with students, which informed the development of an educational intervention involving simulated patient actors. Questionnaires measuring students' perceptions of confidence and competence levels when communicating with dying patients and their families were administered before and after the intervention. The themes from focus groups related to responding to grief and anger, difficulties dealing with emotions, knowing the "right thing" to say, and a lack of experience. A significant increase (p students to communicate with dying patients and their families. The opportunity to develop communication skills was valued. Integration of educational interventions employing simulated patient actors into nursing and medical curricula may assist in improving the care provided to patients at the end of life.

  7. Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions.

    Bell, Cynthia J; Zimet, Gregory D; Hinds, Pamela S; Broome, Marion E; McDaniel, Anna M; Mays, Rose M; Champion, Victoria L

    Adolescents living with incurable cancer require ongoing support to process grief, emotions, and information as disease progresses including treatment options (phase 1 clinical trials and/or hospice/palliative care). Little is known about how adolescents become ready for such discussions. The purpose of this study was to explore the process of adolescent readiness for end-of-life preparedness discussions, generating a theoretical understanding for guiding clinical conversations when curative options are limited. We explored 2 in-depth cases across time using case-study methodology. An à priori conceptual model based on current end-of-life research guided data collection and analysis. Multiple sources including in-depth adolescent interviews generated data collection on model constructs. Analysis followed a logical sequence establishing a chain of evidence linking raw data to study conclusions. Synthesis and data triangulation across cases and time led to theoretical generalizations. Initially, we proposed a linear process of readiness with 3 domains: a cognitive domain (awareness), an emotional domain (acceptance), and a behavioral domain (willingness), which preceded preparedness. Findings led to conceptual model refinement showing readiness is a dynamic internal process that interacts with preparedness. Current awareness context facilitates the type of preparedness discussions (cognitive or emotional). Furthermore, social constraint inhibits discussions. Data support theoretical understanding of the dynamism of readiness. Future research that validates adolescent conceptualization will ensure age-appropriate readiness representation. Understanding the dynamic process of readiness for engaging in end-of-life preparedness provides clinician insight for guiding discussions that facilitate shared decision making and promote quality of life for adolescents and their families.

  8. United States Acculturation and Cancer Patients’ End-of-Life Care

    Wright, Alexi A.; Stieglitz, Heather; Kupersztoch, Yankel M.; Paulk, M. Elizabeth; Kim, Yookyung; Katz, Ingrid T.; Munoz, Francisco; Jimenez, Rachel B.; Mutchler, Jan; Rivera, Lorna; Back, Anthony L.; Prigerson, Holly G.

    2013-01-01

    Background Culture shapes how people understand illness and death, but few studies examine whether acculturation influences patients’ end-of-life treatment preferences and medical care. Methods and Findings In this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n = 171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of “Americanization” in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers’ USAS scores predicted patients’ communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach α = 0.98); and significantly associated with US birthplace (r = 0.66, Punit (AOR = 1.36, 95% CI:1.05–1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR = 2.20, 95% CI:1.28–3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR = 1.59, 95% CI:1.20–2.12). Conclusion The USAS is a reliable and valid measure of “Americanization” associated with advanced cancer patients’ end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more

  9. Medical decision making and medical education: challenges and opportunities.

    Schwartz, Alan

    2011-01-01

    The Flexner Report highlighted the importance of teaching medical students to reason about uncertainty. The science of medical decision making seeks to explain how medical judgments and decisions ought ideally to be made, how they are actually made in practice, and how they can be improved, given the constraints of medical practice. The field considers both clinical decisions by or for individual patients and societal decisions designed to benefit the public. Despite the relevance of decision making to medical practice, it currently receives little formal attention in the U.S. medical school curriculum. This article suggests three roles for medical decision making in medical education. First, basic decision science would be a valuable prerequisite to medical training. Second, several decision-related competencies would be important outcomes of medical education; these include the physician's own decision skills, the ability to guide patients in shared decisions, and knowledge of health policy decisions at the societal level. Finally, decision making could serve as a unifying principle in the design of the medical curriculum, integrating other curricular content around the need to create physicians who are competent and caring decision makers.

  10. Nurses' knowledge of advance directives and perceived confidence in end-of-life care: a cross-sectional study in five countries.

    Coffey, Alice

    2016-01-28

    Nurses\\' knowledge regarding advance directives may affect their administration and completion in end-of-life care. Confidence among nurses is a barrier to the provision of quality end-of-life care. This study investigated nurses\\' knowledge of advance directives and perceived confidence in end-of-life care, in Hong Kong, Ireland, Israel, Italy and the USA using a cross-sectional descriptive design (n = 1089). In all countries, older nurses and those who had more professional experience felt more confident managing patients\\' symptoms at end-of-life and more comfortable stopping preventive medications at end-of-life. Nurses in the USA reported that they have more knowledge and experience of advance directives compared with other countries. In addition, they reported the highest levels of confidence and comfort in dealing with end-of-life care. Although legislation for advance directives does not yet exist in Ireland, nurses reported high levels of confidence in end-of-life care.

  11. A critical analysis of the End of Life Choice Bill 2013.

    Richmond, David E

    2014-07-04

    This paper aims to alert medical practitioners to the legal and ethical problems that passage of the End of Life Choice Bill (which seeks to legalise euthanasia and physician-assisted suicide) would have for them in New Zealand. Although sponsor MP Maryan Street withdrew the Bill on political grounds in October 2013, she has pledged to reintroduce the Bill after the next Parliamentary elections and remains committed to its objectives. A clause by clause analysis of the Bill was undertaken from a clinical perspective, following the sequence of requesting, validating, providing and reporting episodes of euthanasia or physician-assisted suicide rather than following the administrative sequence in which the Bill has been drawn up for Parliamentary debate. Where possible, the experience of other jurisdictions where these end of life options are legal has been drawn upon to enable inferences to be drawn as to the likely effects of the legislation. The analysis supporting this paper reveals that the legislation would: make it possible for virtually any person over the age of 18 to request and receive euthanasia provided they took care in the way they phrased the request, expose medical practitioners who attempted to deter applicants too vigorously to the possibility of legal action on the grounds of attempting to frustrate the applicant's wishes, compromise the ability of practitioners to opt out on conscience grounds, allow the easy circumvention of reporting requirements for each event, provide minimal protection against some people suffering euthanasia without consent or request, and exempt medical practitioners providing euthanasia services from prosecution for any action in the provision of such services, even if they were negligent. The branch of medical practice that specialises in killing people would be the least regulated of all. If passed into legislation, the End of Life Choice Bill will create the most momentous changes to clinical practice and the regulation

  12. End of life and life after death - issues to be addressed

    Poojar Sridhar

    2012-01-01

    Full Text Available Being an Oncologist, I have seen many patients suffering from cancer. It pains a lot looking at them fighting the battle of life, though knowing that they would lose miserably and surrender meekly as majority of the patients report to the hospital at an advanced stage of disease and only palliative care may be the option. There is an urgent need to create - Cancer Awareness in the villages and also about the end of life care in all terminally ill patients. 20 patients in the terminal phase were questioned regarding end of life care. The common questions they asked are, why has God punished me like this? Why me on earth? Should I die so early? Why should I leave my near and dear ones and go far away, from the point of no return? Do I ever see them again? With deep sorrow and sigh, they suffer till the last breath, having the feeling of insecurity as what would happen to their dear ones. In the terminal phase, the patients wishes must be respected and their needs must be fulfilled. The health care professionals should plan an appropriate care for each patient. Most of them feel that the best place to be in end of life is the home. Research has shown that Hospice care may improve the quality of life of a patient who is dying and of the patient′s family. Communication about end of life care and decision making during the final moments of a person′s life are very important. The patients suffering are mainly due to the physical, psychological, social and spiritual issues. Death of a terminally ill patient should never be a sudden loss. All healthcare professionals, Social workers and Non-Governmental Organisations must install the life after death of the person, who has struggled for every breath and assure that he/she shall rest in peace and shall smile seeing their near and dear ones living with dignity and pride in the society. Ultimately, the patient must have dignity in dying.

  13. Hardships of end-of-life care with court-appointed guardians.

    Hastings, Kylie B

    2014-02-01

    In the United States, the court-appointed guardians do not have the ability to make decisions regarding end-of-life (EOL) care for their clients. Additionally, the process of initiating EOL care measures can be slow and cumbersome, despite an existing process of getting approval for such care. This process has the potential to prolong suffering and delay imperative decisions. This article reviews the hardships that patients, court-appointed guardians, and health care staff endure while moving through the oppressive process of obtaining EOL care orders through the court. This article also proposes ways of tuning up the laws, regulations, and communications to make it easier and faster to obtain orders regarding EOL care to preserve the dignity of our patients and loved ones. "A guardianship is a legal relationship created when a person or institution named in a will or assigned by the court to take care of minor children or incompetent adults."

  14. Fighting for Dear Life: Christians and Aggressive End-of-Life Care.

    Shinall, Myrick C

    2014-01-01

    Patients or their family members sometimes give religious reasons for requesting life-sustaining technologies that have little hope of restoring health. This poses an ethical challenge for clinicians and a potential strain on limited health-care resources. Among Christians, one explanation for a preference for aggressive, life-prolonging care is the influence of the idea of martyrdom, which became the normative form of dying in early Christianity. The ancient discourse of martyrdom and the modern discourse of aggressive medical care both share a martial orientation and commend an ethos of combat. This paper examines ancient Christian martyrdom discourse to illuminate its affinity with the discourse of aggressive medical care. The ethos of martyrdom has shaped Christian attitudes toward death such that preference for aggressive medical care at the end of life is understandable.

  15. The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review.

    Peacock, Shelley C

    2013-04-01

    The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

  16. The quality of intensive care unit nurse handover related to end of life: a descriptive comparative international study.

    Ganz, Freda DeKeyser; Endacott, Ruth; Chaboyer, Wendy; Benbinishty, Julie; Ben Nun, Maureen; Ryan, Helen; Schoter, Amanda; Boulanger, Carole; Chamberlain, Wendy; Spooner, Amy

    2015-01-01

    Quality ICU end-of-life-care has been found to be related to good communication. Handover is one form of communication that can be problematic due to lost or omitted information. A first step in improving care is to measure and describe it. The objective of this study was to describe the quality of ICU nurse handover related to end-of-life care and to compare the practices of different ICUs in three different countries. This was a descriptive comparative study. The study was conducted in seven ICUs in three countries: Australia (1 unit), Israel (3 units) and the UK (3 units). A convenience sample of 157 handovers was studied. Handover quality was rated based on the ICU End-of-Life Handover tool, developed by the authors. The highest levels of handover quality were in the areas of goals of care and pain management while lowest levels were for legal issues (proxy and advanced directives) related to end of life. Significant differences were found between countries and units in the total handover score (country: F(2,154)=25.97, p=studied. The total score was higher when quality of care might be deemed at greater risk (if the nurses did not know the patient or the patient was expected to die), indicating that nurses were exercising some form of discretionary decision making around handover communication; thus validating the measurement tool. Copyright © 2014. Published by Elsevier Ltd.

  17. Experience with an end-of-life practice at a university hospital.

    Campbell, M L; Frank, R R

    1997-01-01

    To describe a 10-yr experience with an end-of-life practice in a hospital. A nonexperimental, prospective, descriptive design was used to record variables from a convenience sample of patients transferred to the Comprehensive Supportive Care Team. Detroit Receiving Hospital is an urban, university-affiliated, Level I trauma/emergency hospital. Patients who are not expected to survive hospitalization, and for whom a decision has been made to focus care on palliative interventions, are candidates for care by this practice. None. Patient demographics, including the following information: age, gender; diagnoses; illness severity; mortality rate; and disposition. Measures of resource utilization included: referral sources; Therapeutic intervention Scoring System values; bed costs; and length of hospital stay. Satisfactory patient/family care with a measurable reeducation in the use of resources can be achieved in the hospital setting. A hands-on approach to the care of dying patients by this specialty, palliative care service has provided patients, families, and clinicians with the type of support needed for satisfactory end-of-life care. A summary of our experience may be useful to others.

  18. Reducing environmental burdens of solid-state lighting through end-of-life design

    Hendrickson, C T; Matthews, D H; Ashe, M; Jaramillo, P; McMichael, F C

    2010-01-01

    With 20% of US electricity used for lighting, energy efficient solid-state lighting technology could have significant benefits. While energy efficiency in use is important, the life cycle cost, energy and environmental impacts of light-emitting diode (LED) solid-state lighting could be reduced by reusing, remanufacturing or recycling components of the end products. Design decisions at this time for the nascent technology can reduce material and manufacturing burdens by considering the ease of disassembly, potential for remanufacturing, and recovery of parts and materials for reuse and recycling. We use teardowns of three commercial solid-state lighting products designed to fit in conventional Edison light bulb sockets to analyze potential end-of-life reuse strategies for solid-state lighting and recommend strategies for the industry. Current lamp designs would benefit from standardization of part connections to facilitate disassembly and remanufacturing of components, and fewer material types in structural pieces to maximize homogeneous materials recovery. The lighting industry should also start now to develop an effective product take-back system for collecting future end-of-life products.

  19. Reducing environmental burdens of solid-state lighting through end-of-life design

    Hendrickson, C T; Matthews, D H; Ashe, M; Jaramillo, P; McMichael, F C, E-mail: cth@cmu.ed [Green Design Institute, Carnegie Mellon University (United States)

    2010-01-15

    With 20% of US electricity used for lighting, energy efficient solid-state lighting technology could have significant benefits. While energy efficiency in use is important, the life cycle cost, energy and environmental impacts of light-emitting diode (LED) solid-state lighting could be reduced by reusing, remanufacturing or recycling components of the end products. Design decisions at this time for the nascent technology can reduce material and manufacturing burdens by considering the ease of disassembly, potential for remanufacturing, and recovery of parts and materials for reuse and recycling. We use teardowns of three commercial solid-state lighting products designed to fit in conventional Edison light bulb sockets to analyze potential end-of-life reuse strategies for solid-state lighting and recommend strategies for the industry. Current lamp designs would benefit from standardization of part connections to facilitate disassembly and remanufacturing of components, and fewer material types in structural pieces to maximize homogeneous materials recovery. The lighting industry should also start now to develop an effective product take-back system for collecting future end-of-life products.

  20. Worldwide end-of-life practice for patients in ICUs.

    Wong, Wai-Tat; Phua, Jason; Joynt, Gavin M

    2018-04-01

    Published data and practice recommendations on end-of-life (EOL) generally reflect Western practice frameworks. Understanding worldwide practices is important because improving economic conditions are promoting rapid expansion of intensive care services in many previously disadvantaged regions, and increasing migration has promoted a new cultural diversity previously predominantly unicultural societies. This review explores current knowledge of similarities and differences in EOL practice between regions and possible causes and implications of these differences. Recent observational and survey data shows a marked variability in the practice of withholding and withdrawing life sustaining therapy worldwide. Some evidence supports the view that culture, religion, and socioeconomic factors influence EOL practice, and individually or together account for differences observed. There are also likely to be commonly desired values and expectations for EOL practice, and recent attempts at establishing where worldwide consensus may lie have improved our understanding of shared values and practices. Awareness of differences, understanding their likely complex causes, and using this knowledge to inform individualized care at EOL is likely to improve the quality of care for patients. Further research should clarify the causes of EOL practice variability, monitor trends, and objectively evaluate the quality of EOL practice worldwide.

  1. Three factors critical for end-of-life care.

    Franey, S G

    1996-01-01

    Appropriate care of persons with life-threatening illnesses requires a different, perhaps higher level of response from organized healthcare than has been typical in the past. This involves three critical components: Leaders must be committed, visible advocates of high-quality end-of-life care. This enables them to plan changes, deploy resources, and integrate this commitment throughout the organization's strategic plan. Ensuring appropriate care of the dying requires adequate human and financial resources. First, the organization must fully identify the educational and service needs of patients, families, and care givers experiencing life-threatening illnesses. The organization must work well with other community-based organizations to address identified needs. Senior managers can improve care by personally commissioning teams, acknowledging success, and rewarding performance. Finally, organizational goals, strategies, and performance objectives must be shaped by a commitment to ensure appropriate care of the dying. Our commitment to the dying must be based on our values. An organizational "statement of rights and responsibilities" is one way of providing a visible expression of the mission, core values, and mutual responsibilities among care givers and patients, residents, HMO members, and clients.

  2. Hospital end-of-life care in haematological malignancies.

    Beaussant, Yvan; Daguindau, Etienne; Chauchet, Adrien; Rochigneux, Philippe; Tournigand, Christophe; Aubry, Régis; Morin, Lucas

    2018-02-06

    To investigate patterns of care during the last months of life of hospitalised patients who died from different haematological malignancies. Nationwide register-based study, including all hospitalised adults ≥20 years who died from haematological malignancies in France in 2010-2013. Outcomes included use of invasive cancer treatments and referral to palliative care. Percentages are adjusted for sex and age using direct standardisation. Of 46 629 inpatients who died with haematological malignancies, 24.5% received chemotherapy during the last month before death, 48.5% received blood transfusion, 12.3% were under invasive ventilation and 18.1% died in intensive care units. We found important variations between haematological malignancies. The use of chemotherapy during the last month of life varied from 8.6% among patients with chronic myeloid leukaemia up to 30.1% among those with non-Hodgkin's lymphoma (Pcare units. A high proportion of patients who died from haematological malignancies receive specific treatments near the end of life. There is a need for a better and earlier integration of the palliative care approach in the standard practice of haematology. However, substantial variation according to the type of haematological malignancy suggests that the patients should not be considered as one homogeneous group. Implementation of palliative care should account for differences across haematological malignancies. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  3. Symptoms and suffering at the end of life in children with cancer: an Australian perspective.

    Heath, John A; Clarke, Naomi E; Donath, Susan M; McCarthy, Maria; Anderson, Vicki A; Wolfe, Joanne

    2010-01-18

    To examine the symptoms, level of suffering, and care of Australian children with cancer at the end of life. In a study conducted at the Royal Children's Hospital, Melbourne, parents of children who had died of cancer over the period 1996-2004 were interviewed between February 2004 and August 2006. Parents also completed and returned self-report questionnaires. Proportions of children suffering from and treated for various symptoms; proportion of children receiving cancer-directed therapy at the end of life; proportion of children whose treatment of symptoms was successful; location of death. Of 193 eligible families, 96 (50%) were interviewed. All interviews were conducted in person, and occurred a mean of 4.5 years (SD, 2.1 years) after the child's death. Eighty-four per cent of parents reported that their child had suffered "a lot" or "a great deal" from at least one symptom in their last month of life--most commonly pain (46%), fatigue (43%) and poor appetite (30%). Children who received cancer-directed therapy during the end-of-life period (47%) suffered from a greater number of symptoms than those who did not receive treatment (P = 0.03), but the severity of symptoms did not differ between these groups. Of the children treated for specific symptoms, treatment was successful in 47% of those with pain, 18% of those with fatigue and 17% of those with poor appetite. Of the 61 families who felt they had time to plan where their child would die, 89% preferred to have their child die at home. The majority of children (61%) died at home. Of those who died in hospital, less than a quarter died in the intensive care unit. Relatively high rates of death at home and low rates of unsuccessful medical interventions suggest a realistic approach at the end of life for Australian children dying of cancer. However, many suffer from unresolved symptoms, and greater attention should be paid to palliative care for these children.

  4. [French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions].

    de Saint Blanquat, L; Cremer, R; Elie, C; Lesage, F; Dupic, L; Hubert, P

    2014-01-01

    To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. A multicenter survey in 24 French PICUs during the fourth trimester 2010. One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period. Copyright © 2013 Elsevier Masson SAS. All rights reserved.

  5. Education and training to enhance end-of-life care for nursing home staff: a systematic literature review.

    Anstey, Sally; Powell, Tom; Coles, Bernadette; Hale, Rachel; Gould, Dinah

    2016-09-01

    The delivery of end-of-life care in nursing homes is challenging. This situation is of concern as 20% of the population die in this setting. Commonly reported reasons include limited access to medical care, inadequate clinical leadership and poor communication between nursing home and medical staff. Education for nursing home staff is suggested as the most important way of overcoming these obstacles. To identify educational interventions to enhance end-of-life care for nursing home staff and to identify types of study designs and outcomes to indicate success and benchmark interventions against recent international guidelines for education for palliative and end-of-life care. Thirteen databases and reference lists of key journals were searched from the inception of each up to September 2014. Included studies were appraised for quality and data were synthesised thematically. Twenty-one studies were reviewed. Methodological quality was poor. Education was not of a standard that could be expected to alter clinical behaviour and was evaluated mainly from the perspectives of staff: self-reported increase in knowledge, skills and confidence delivering care rather than direct evidence of impact on clinical practice and patient outcomes. Follow-up was often short term, and despite sound economic arguments for delivering effective end-of-life care to reduce burden on the health service, no economic analyses were reported. There is a clear and urgent need to design educational interventions that have the potential to improve end-of-life care in nursing homes. Robust evaluation of these interventions should include impact on residents, families and staff and include economic analysis. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  6. Engaging Physician Learners Through a Web-Based Platform: Individualized End-of-Life Education.

    Bergman, Jonathan; Ballon-Landa, Eric; Lerman, Steven E; Kwan, Lorna; Bennett, Carol J; Litwin, Mark S

    2016-09-01

    Web-based modules provide a convenient and low-cost education platform, yet should be carefully designed to ensure that learners are actively engaged. In order to improve attitudes and knowledge in end-of-life (EOL) care, we developed a web-based educational module that employed hyperlinks to allow users access to auxiliary resources: clinical guidelines and seminal research papers. Participants took pre-test evaluations of attitudes and knowledge regarding EOL care prior to accessing the educational module, and a post-test evaluation following the module intervention. We recorded the type of hyperlinks (guideline or paper) accessed by learners, and stratified participants into groups based on link type accessed (none, either, or both). We used demographic and educational data to develop a multivariate mixed-effects regression analysis to develop adjusted predictions of attitudes and knowledge. 114 individuals participated. The majority had some professional exposure to EOL care (prior instruction 62%; EOL referral 53%; EOL discussion 56%), though most had no family (68%) or personal experience (51%). On bivariate analysis, non-partnered (p = .04), medical student training level (p = .03), prior palliative care referral (p = .02), having a family member (p = .02) and personal experience of EOL care (p improvements. Auxiliary resources accessible by hyperlink are an effective adjunct to web-based learning in end-of-life care. © The Author(s) 2015.

  7. Court decisions on medical malpractice.

    Knaak, Jan-Paul; Parzeller, Markus

    2014-11-01

    Recent studies on court cases dealing with medical malpractice are few and far between. This retrospective study, therefore, undertakes an analysis of medical malpractice lawsuits brought before regional courts in two judicial districts of the federal state of Hesse. Over a 5-year period (2006-2010), 232 court decisions on medical malpractice taken by the regional courts (Landgericht) of Kassel and Marburg were evaluated according to medical discipline, diagnosis, therapy, relevant level of care, charge of neglect of duty by the claimant party, outcome of the lawsuit, and further criteria. With certain overlaps, the disciplines most frequently confronted with claims of medical malpractice were accident surgery and orthopedics (30.2%; n = 70), dentistry (16.4%; n = 38), surgery (12.1%; n = 28), and gynecology and obstetrics (7.8%; n = 18), followed by the remaining medical disciplines (38.8%; n = 90). Malpractice allegations were brought against the practice-based sector in 35.8 % (n = 83) of cases, the hospital-based sector in 63.3% (n = 147) of cases, and other sectors in 0.9% (n = 2) of cases. The allegation grounds included false administration of treatment (67.2%; n = 156), false indication of treatment (37.1%; n = 86), false diagnosis (31.5%; n = 73), and/or organizational negligence (13.8%; n = 32). A breach of duty to inform was given as grounds for the claim in 38.8% (n = 90) of cases. A significant majority of 65.6% (n = 152) of cases ended in a court settlement. Of the cases, 18.9% (n = 44) were concluded by claim withdrawal, 11.2% (n = 26) by claim dismissal and 2.6% (n = 6) by criminal sentence. Of the cases, 1.7% (n = 4) were for purposes of securing evidence. Although there was no conclusive evidence of malpractice, two thirds of the cases ended in a court settlement. On the one hand, this outcome reduces the burden on the courts, but on the other, it can in the long term give

  8. Attitudes and behaviors of Japanese physicians concerning withholding and withdrawal of life-sustaining treatment for end-of-life patients: results from an Internet survey

    Bito Seiji

    2007-06-01

    Full Text Available Abstract Background Evidence concerning how Japanese physicians think and behave in specific clinical situations that involve withholding or withdrawal of medical interventions for end-of-life or frail elderly patients is yet insufficient. Methods To analyze decisions and actions concerning the withholding/withdrawal of life-support care by Japanese physicians, we conducted cross-sectional web-based internet survey presenting three scenarios involving an elderly comatose patient following a severe stroke. Volunteer physicians were recruited for the survey through mailing lists and medical journals. The respondents answered questions concerning attitudes and behaviors regarding decision-making for the withholding/withdrawal of life-support care, namely, the initiation/withdrawal of tube feeding and respirator attachment. Results Of the 304 responses analyzed, a majority felt that tube feeding should be initiated in these scenarios. Only 18% felt that a respirator should be attached when the patient had severe pneumonia and respiratory failure. Over half the respondents felt that tube feeding should not be withdrawn when the coma extended beyond 6 months. Only 11% responded that they actually withdrew tube feeding. Half the respondents perceived tube feeding in such a patient as a "life-sustaining treatment," whereas the other half disagreed. Physicians seeking clinical ethics consultation supported the withdrawal of tube feeding (OR, 6.4; 95% CI, 2.5–16.3; P Conclusion Physicians tend to harbor greater negative attitudes toward the withdrawal of life-support care than its withholding. On the other hand, they favor withholding invasive life-sustaining treatments such as the attachment of a respirator over less invasive and long-term treatments such as tube feeding. Discrepancies were demonstrated between attitudes and actual behaviors. Physicians may need systematic support for appropriate decision-making for end-of-life care.

  9. Consequences count: against absolutism at the end of life.

    Snelling, Paul C

    2004-05-01

    There has been a considerable amount of debate in the nursing literature about euthanasia, and especially the distinctions between acts and omissions, and killing and letting die. These distinctions are required by opponents of euthanasia to justify allowing some cases of passive euthanasia while forbidding all cases of active euthanasia. This paper adds to the debate by arguing that the position that absolutely forbids euthanasia is theoretically inconsistent. The paper first considers the place of moral theory in analysing moral problems, within the framework of the principles of biomedical ethics. It is argued that despite a moral pluralism that operates in many areas, the legal status of euthanasia is based upon an absolute deontological position against deliberate killing, which cannot be overridden by appeals to favourable consequences. In order that certain forms of passive euthanasia can be allowed, this position allows distinctions within three pairs of concepts--acts and omissions, killing and letting die, and ordinary and extraordinary means. A further method of justifying certain actions near the end of life is the doctrine of double effect. These paired concepts and the doctrine of double effect are analysed with special reference to their consequences. The application of the doctrine of double effect and the three distinctions relies on consideration of their consequences, allowing in practice what in theory is denied. This is important because it weakens the absolute case against euthanasia, which disallows any direct consequentialist appeal. If consequences count in the application of the doctrine and the distinctions, then they should also count directly prior to their application. This strengthens the argument for active euthanasia in certain cases.

  10. Fatigue in children with cancer at the end of life.

    Ullrich, Christina K; Dussel, Veronica; Hilden, Joanne M; Sheaffer, Jan W; Moore, Caron L; Berde, Charles B; Wolfe, Joanne

    2010-10-01

    Fatigue is a prevalent source of suffering in children with advanced cancer; yet, little is known about it. This study aimed to describe fatigue experienced by children with advanced cancer and to identify the factors associated with suffering from fatigue and its treatment. A retrospective cross-sectional study of 141 parents of children who died of cancer (response rate: 64%) was conducted in two tertiary-level U.S. pediatric hospitals. By parent report, 96% of children experienced fatigue in the last month of life. Nearly 50% experienced significant suffering from fatigue; this was associated with suffering from pain, dyspnea, anorexia, nausea/vomiting, diarrhea, anxiety, sadness, or fear (Pfear (OR=5.13, 95% CI=2.03-12.96, P ≤ 0.001) remained independently associated with fatigue. Children suffering from fatigue had primary oncologists with fewer years' experience than children who did not suffer from fatigue (mean=7.7 years, standard deviation [SD]=4.9 vs. mean of 9.9 years, SD=6.0, P=0.02). Among children with fatigue, 17 of 129 (13%) received fatigue-directed treatment, which was successful in 3 of 12 (25%). Children experiencing side effects from dyspnea or pain treatment were more likely to be treated for fatigue (relative risk=1.25, 95% CI=1.06-1.47, P=0.009). Fatigue is a common source of suffering in children with cancer at the end of life. Palliation of this symptom is rarely successful. Increased attention to factors associated with fatigue and effective interventions to ameliorate fatigue are needed. Copyright © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  11. Engaging homeless persons in end of life preparations.

    Song, John; Wall, Melanie M; Ratner, Edward R; Bartels, Dianne M; Ulvestad, Nancy; Gelberg, Lillian

    2008-12-01

    There are no prospective studies that have investigated the effects of an intervention to improve end of life (EOL) care in an underserved population. To determine whether homeless persons will complete an advance directive (AD). Randomized trial comparing two modes of providing an opportunity for homeless persons to complete an AD. Half of the subjects were randomized to a self-guided group (SG) who were given an AD and written instructions; the other half were given the same material but, in addition, were offered the opportunity to receive guidance to complete the AD (CG). Fifty-nine homeless persons recruited from a drop-in center. Rate of AD completion and baseline and 3-month follow-up EOL-related knowledge, attitudes, and behaviors. The overall AD completion rate was 44%, with a statistically significant higher completion rate of 59% in the CG group compared to 30% in the self-guided only group. Frequency of worry about death decreased among those who filled out an AD from 50% to 12.5%, and also among those who did not (25% to 12.5%) (p < .05). Among those who filled out an AD, there were increases in plans to write down EOL wishes (56% to 100%; p < .05) and plans to talk about these wishes with someone (63% to 94%; p < .05). This study demonstrates that people living in dire economic and social situations will complete an AD when offered the opportunity. While offering guidance resulted in higher rates of completion; even a simple self-guided AD process can achieve completion of ADs in this population.

  12. End-of-life flows of multiple cycle consumer products

    Tsiliyannis, C.A.

    2011-01-01

    Explicit expressions for the end-of-life flows (EOL) of single and multiple cycle products (MCPs) are presented, including deterministic and stochastic EOL exit. The expressions are given in terms of the physical parameters (maximum lifetime, T, annual cycling frequency, f, number of cycles, N, and early discard or usage loss). EOL flows are also obtained for hi-tech products, which are rapidly renewed and thus may not attain steady state (e.g. electronic products, passenger cars). A ten-step recursive procedure for obtaining the dynamic EOL flow evolution is proposed. Applications of the EOL expressions and the ten-step procedure are given for electric household appliances, industrial machinery, tyres, vehicles and buildings, both for deterministic and stochastic EOL exit, (normal, Weibull and uniform exit distributions). The effect of the physical parameters and the stochastic characteristics on the EOL flow is investigated in the examples: it is shown that the EOL flow profile is determined primarily by the early discard dynamics; it also depends strongly on longevity and cycling frequency: higher lifetime or early discard/loss imply lower dynamic and steady state EOL flows. The stochastic exit shapes the overall EOL dynamic profile: Under symmetric EOL exit distribution, as the variance of the distribution increases (uniform to normal to deterministic) the initial EOL flow rise becomes steeper but the steady state or maximum EOL flow level is lower. The steepest EOL flow profile, featuring the highest steady state or maximum level, as well, corresponds to skew, earlier shifted EOL exit (e.g. Weibull). Since the EOL flow of returned products consists the sink of the reuse/remanufacturing cycle (sink to recycle) the results may be used in closed loop product lifecycle management operations for scheduling and sizing reverse manufacturing and for planning recycle logistics. Decoupling and quantification of both the full age EOL and of the early discard flows is

  13. Older patients’ attitudes towards and experiences of patient-physician end-of-life communication: a secondary analysis of interviews from British, Dutch and Belgian patients

    Evans Natalie

    2012-11-01

    Full Text Available Abstract Background Older patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients’ communication with physicians. This study examines older patients’ attitudes towards, and experiences of, patient-physician end-of-life (EoL communication in three European countries. Methods A secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach. Results Themes from 30 interviews (Male n = 20, Median age 78.5 included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians’ availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment. Conclusions A variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the ‘informed’ and the ‘shared’ patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in

  14. Older patients’ attitudes towards and experiences of patient-physician end-of-life communication: a secondary analysis of interviews from British, Dutch and Belgian patients

    2012-01-01

    Background Older patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients’ communication with physicians. This study examines older patients’ attitudes towards, and experiences of, patient-physician end-of-life (EoL) communication in three European countries. Methods A secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach. Results Themes from 30 interviews (Male n = 20, Median age 78.5) included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians’ availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment. Conclusions A variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the ‘informed’ and the ‘shared’ patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in patients’ experiences. PMID

  15. Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients.

    Marsac, Meghan L; Kindler, Christine; Weiss, Danielle; Ragsdale, Lindsay

    2018-05-18

    Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. Systematic review. Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.

  16. Experiences and needs of families regarding prognostic communication in an intensive care unit: supporting families at the end of life.

    Gutierrez, Karen M

    2012-01-01

    This article reports the results of a study designed to explore the experiences and needs of family members for prognostic communication at end of life in an intensive care unit (ICU). Subjects in this qualitative study included 20 family members of patients at high risk for death in 1 adult medical/surgical ICU. All subjects were interviewed once utilizing a semistructured interview format, with approximately half interviewed multiple times during the ICU stay. Families described 5 themes of information-related "work": (1) hearing and recalling, (2) accessing, (3) interpreting, (4) retaining, and (5) utilizing information for decision making. Barriers, including accessing physicians and cognitive issues from high levels of stress, made this work difficult. Families described a need for prognostic information, especially if the prognosis was poor. Because hearing this news was difficult, they needed it communicated with respect, sensitivity, and compassion. Suggestions for clinical practice to support families in their information-related work are presented. Overall, the importance of providers approaching communication from a holistic perspective, extending beyond simply passing on information, is emphasized. Viewing communication as a therapeutic modality, and communicating with compassion, sensitivity, and a genuine sense of caring, can help provide both the information and the emotional support and comfort families desperately need.

  17. End-of-life chemotherapy is associated with poor survival and aggressive care in patients with small cell lung cancer.

    Zhu, Yingming; Tang, Ke; Zhao, Fen; Zang, Yuanwei; Wang, Xiaodong; Li, Zhenxiang; Sun, Xindong; Yu, Jinming

    2018-05-29

    Concerns regarding end-of-life (EOL) chemotherapy are being increasingly raised. Tumor chemosensitivity may influence the decision for aggressive chemotherapy near the EOL. Data on EOL chemotherapy in highly chemosensitive tumors, such as small cell lung cancer (SCLC), are scarce. A total of 143 SCLC decedents were consecutively included. Data about clinical factors and treatment modalities were obtained from the electronic medical records. The relationships among EOL chemotherapy, clinical features, overall survival (OS), and aggressive care were investigated. About 64% of patients had chemosensitive disease. In total, 30.8 and 16.1% of patients received EOL chemotherapy within the last 1 and 2 months of life, respectively. Younger age was associated with a higher rate of EOL chemotherapy. We determined that EOL chemotherapy was related to inferior OS not only in the entire group, but also in the chemosensitive subgroup. Furthermore, more intensive care was observed among patients who underwent EOL chemotherapy compared with those who did not. EOL chemotherapy was correlated with shorter survival and more aggressive care in patients with SCLC. More research is needed to develop indications for terminating palliative chemotherapy, to help physicians and patients with their difficult choices.

  18. Impact of Oncologists’ Attitudes Toward End-of-Life Care on Patients’ Access to Palliative Care

    Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

    2016-01-01

    Background. It is unclear how oncologists’ attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists’ EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. Methods. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians’ report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Results. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5–7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. Implications for Practice: In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower levels of both primary and secondary

  19. End-of-Life Care Interventions: An Economic Analysis.

    Pham, B; Krahn, M

    2014-01-01

    The annual cost of providing care for patients in their last year of life is estimated to account for approximately 9% of the Ontario health care budget. Access to integrated, comprehensive support and pain/symptom management appears to be inadequate and inequitable. To evaluate the cost-effectiveness of end-of-life (EoL) care interventions included in the EoL care mega-analysis. Multiple sources were used, including systematic reviews, linked health administration databases, survey data, planning documents, expert input, and additional literature searches. We conducted a literature review of cost-effectiveness studies to inform the primary economic analysis. We conducted the primary economic analysis and budget impact analysis for an Ontario cohort of decedents and their families and included interventions pertaining to team-based models of care, patient care planning discussions, educational interventions for patients and caregivers, and supportive interventions for informal caregivers. The time horizon was the last year of life. Costs were in 2013 Canadian dollars. Effectiveness measures included days at home, percentage dying at home, and quality-adjusted life-days. We developed a Markov model; model inputs were obtained from a cohort of Ontario decedents assembled from Institute for Clinical Evaluative Sciences databases and published literature. In-home palliative team care was cost-effective; it increased the chance of dying at home by 10%, increased the average number of days at home (6 days) and quality-adjusted life-days (0.5 days), and it reduced costs by approximately $4,400 per patient. Expanding in-home palliative team care to those currently not receiving such services (approximately 45,000 per year, at an annual cost of $76-108 million) is likely to improve quality of life, reduce the use of acute care resources, and save $191-$385 million in health care costs. Results for the other interventions were uncertain. The cost-effectiveness analysis was

  20. [Palliative care and end-of-life patients in emergency situations. Recommendations on optimization of out-patient care].

    Wiese, C H R; Vagts, D A; Kampa, U; Pfeiffer, G; Grom, I-U; Gerth, M A; Graf, B M; Zausig, Y A

    2011-02-01

    At the end of life acute exacerbations of medical symptoms (e.g. dyspnea) in palliative care patients often result in emergency medical services being alerted. The goals of this study were to discuss cooperation between emergency medical and palliative care structures to optimize the quality of care in emergencies involving palliative care patients. For data collection an open discussion of the main topics by experts in palliative and emergency medical care was employed. Main outcome measures and recommendations included responses regarding current practices related to expert opinions and international literature sources. As the essential points of consensus the following recommendations for optimization of care were named: (1) integration of palliative care in the emergency medicine curricula for pre-hospital emergency physicians and paramedics, (2) development of outpatient palliative care, (3) integration of palliative care teams into emergency medical structures, (4) cooperation between palliative and emergency medical care, (5) integration of crisis intervention into outpatient palliative emergency medical care, (6) provision of emergency plans and emergency medical boxes, (7) provision of palliative crisis cards and do not attempt resuscitation (DNAR) orders, (8) psychosocial aspects concerning palliative emergencies and (9) definition of palliative patients and their special situation by the physician responsible for prior treatment. Prehospital emergency physicians are confronted with emergencies in palliative care patients every day. In the treatment of these emergencies there are potentially serious conflicts due to the different therapeutic concepts of palliative medical care and emergency medical services. This study demonstrates that there is a need for regulated criteria for the therapy of palliative patients and patients at the end of life in emergency situations. Overall, more clinical investigations concerning end-of-life care and unresponsive

  1. Exploring family experiences of nursing aspects of end-of-life care in the ICU: A qualitative study.

    Noome, Marijke; Dijkstra, Boukje M; van Leeuwen, Evert; Vloet, Lilian C M

    2016-04-01

    The aim of this study was to examine the experience(s) of family with the nursing aspects of End-of-life care in the intensive care unit after a decision to end life-sustaining treatment, and to describe what nursing care was most appreciated and what was lacking. A phenomenological approach including inductive thematic analysis was used. Twenty-six family members of deceased critically ill-patients were interviewed within two months after the patient's death about their experiences with nursing aspects of end-of-life care in the intensive care unit. Most family members experienced nursing contribution to end-of-life care of the patient and themselves, especially supportive care. Families mentioned the following topics: Communication between intensive care nurses, critically ill patients and family; Nursing care for critically ill patients; Nursing care for families of critically ill patients; Pre-conditions. Families appreciated that intensive care nurses were available at any time and willing to answer questions. But care was lacking because families had for example, a sense of responsibility for obtaining information, they had problems to understand their role in the decision-making process, and were not invited by nurses to participate in the care. Most family appreciated the nursing EOLC they received, specifically the nursing care given to the patient and themselves. Some topics needed more attention, like information and support for the family. Copyright © 2016 Elsevier Ltd. All rights reserved.

  2. An Ethics of Permission: A Response to the California End of Life Option Act.

    Nelson, Craig

    2016-01-01

    An ethics of permission can be helpful in framing a response to the ethical differences surrounding the California End of Life Option Act. Law does not define morality, and reaching a moral understanding demands thorough reflection. An ethics of permission examines the ethical demands of a permissive law for both clinician and patient. Serving the good of the patient, respecting professional conscience, and following the law are three ethical elements. Although developing an ethics of permission includes these three elements, these elements do not exhaust all the moral implications involved. An ethics of permission also includes the importance of exercising professional tolerance in the honoring of clinicians who choose to participate or refuse to participate. In addition, an ethics of permission also provides insight in implementing just and fair behavior among medical professionals.

  3. The death of Ivan Ilych: A blueprint for intervention at the end of life.

    Papadimos, Thomas J; Stawicki, Stanislaw Pa

    2011-07-01

    Medical practice and the field of humanities frequently intersect. It is uncanny how problems presented or described in literature that are several hundred years old still present themselves to us on a regular basis. Often, our answers to these dilemmas are not perfect, but we continue our attempts at providing solutions through an enlightened evolution of our thought and approaches. Leo Tolstoy's novella, The Death of Ivan Ilych, is a classic piece of literature that allows a view of the dying process in an ordinary human being, and presents us with an opportunity to observe, not only the intersection of medicine and humanities, but also that of critical care and palliative medicine. Here Tolstoy, through his keen observation of the human condition at the end of life, allows us an opportunity to view a 19(th) century perspective that has an all too familiar persistence that needs a 21(st) century intervention.

  4. Detained and Dying: Ethical Issues Surrounding End-of-Life Care in Prison.

    Stensland, Meredith; Sanders, Sara

    2016-01-01

    Prisons are increasingly being called upon to provide end-of-life (EOL) care within the restrictive correctional environment. Several relatively recent phenomena have brought medical ethics to the forefront of prison EOL care-including aging behind bars, a paradigm shift in prison culture, the increasing rate of in-prison deaths, and the corresponding prison hospice movement. This article examines prominent ethical issues that emerge for prison personnel who are tasked with providing care to terminally ill offenders by presenting three offender composite characters that exemplify dying offenders and emergent ethical issues surrounding their care. Identification and critical analysis of these ethical issues demonstrate the need for strong commitment to ethical practice and highlights specific issues for prisons to examine in their own EOL care practice.

  5. End of Life (Supporting a Terminally Ill Loved One)

    ... Clergy may also be of great help if religion is important to the patient. You can encourage ... logo are trademarks of Mayo Foundation for Medical Education and Research. © 1998-2018 Mayo Foundation for Medical ...

  6. Palliative healthcare: cost reduction and quality enhancement using end-of-life survey methodology.

    Falls, Christopher Edward

    2008-01-01

    American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.

  7. Influence of framing on medical decision making

    Feng, Jun; Gong, Jingjing; Huang, Yonghua; Wei, Yazhou; Zhang, Weiwei; Zhang, Yan

    2013-01-01

    Numerous studies have demonstrated the robustness of the framing effect in a variety of contexts, especially in medical decision making. Unfortunately, research is still inconsistent as to how so many variables impact framing effects in medical decision making. Additionally, much attention should be paid to the framing effect not only in hypothetical scenarios but also in clinical experience.

  8. Influence of framing on medical decision making.

    Gong, Jingjing; Zhang, Yan; Feng, Jun; Huang, Yonghua; Wei, Yazhou; Zhang, Weiwei

    2013-01-01

    Numerous studies have demonstrated the robustness of the framing effect in a variety of contexts, especially in medical decision making. Unfortunately, research is still inconsistent as to how so many variables impact framing effects in medical decision making. Additionally, much attention should be paid to the framing effect not only in hypothetical scenarios but also in clinical experience.

  9. Influence of framing on medical decision making

    Gong, Jingjing; Zhang, Yan; Feng, Jun; Huang, Yonghua; Wei, Yazhou; Zhang, Weiwei

    2013-01-01

    Numerous studies have demonstrated the robustness of the framing effect in a variety of contexts, especially in medical decision making. Unfortunately, research is still inconsistent as to how so many variables impact framing effects in medical decision making. Additionally, much attention should be paid to the framing effect not only in hypothetical scenarios but also in clinical experience. PMID:27034630

  10. 'End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences.

    Brighton, Lisa Jane; Koffman, Jonathan; Robinson, Vicky; Khan, Shaheen A; George, Rob; Burman, Rachel; Selman, Lucy Ellen

    2017-10-01

    Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. To explore hospital volunteers' end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Qualitative focus groups. Volunteers from a large teaching hospital were purposively sampled. Five focus groups were conducted with 25 hospital volunteers (aged 19-80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to 'refresh' training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals.

  11. End of life could be on any ward really’: A qualitative study of hospital volunteers’ end-of-life care training needs and learning preferences

    Brighton, Lisa Jane; Koffman, Jonathan; Robinson, Vicky; Khan, Shaheen A; George, Rob; Burman, Rachel; Selman, Lucy Ellen

    2017-01-01

    Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. Aims: To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Design: Qualitative focus groups. Setting/participants: Volunteers from a large teaching hospital were purposively sampled. Results: Five focus groups were conducted with 25 hospital volunteers (aged 19–80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to ‘refresh’ training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals. PMID:28056642

  12. Social Work Practice with LGBT Elders at End of Life: Developing Practice Evaluation and Clinical Skills Through a Cultural Perspective.

    Arthur, Darren P

    2015-01-01

    This article focuses on culturally sensitive clinical issues related to best practices with lesbian, gay, bisexual, transgender (LGBT) elder patients at end-of-life (EOL) at key points in the therapeutic relationship. Vital concepts, including practice evaluation and clinical skills, are presented through a cultural and oncology lens. There is a paucity of LGBT research and literature as well as a shortfall of MSW graduate school education specific to social work palliative and end-of-life care (PELC) practice with LGBT elders. The content of this article is designed to be adapted and used as an educational tool for institutions, agencies, graduate programs, medical professions, social work, and students. Learning the unique elements of LGBT cultural history and their implications on EOL care can improve social work practice. This article provides an examination from assessment and engagement basics to advance care planning incorporating specific LGBT EOL issues.

  13. Interviews on end-of-life care with older people: reflections on six european studies

    Pleschberger, S.; Seymour, J.E.; Payne, S.; Deschepper, R.; Onwuteaka-Philipsen, B.D.; Rurup, M.L.

    2011-01-01

    Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European

  14. Selection bias in family reports on end of life with dementia in nursing homes

    van der Steen, J.T.; Deliens, L.; Ribbe, M.W.; Onwuteaka-Philipsen, B.D.

    2012-01-01

    Background: Selective participation in retrospective studies of families recruited after the patient's death may threaten generalizability of reports on end-of-life experiences. Objectives: To assess possible selection bias in retrospective study of dementia at the end of life using family reports.

  15. End-of-Life Care Education for Psychiatric Residents: Attitudes, Preparedness, and Conceptualizations of Dignity

    Tait, Glendon R.; Hodges, Brian D.

    2009-01-01

    Objective: The authors examined psychiatric residents' attitudes, perceived preparedness, experiences, and needs in end-of-life care education. They also examined how residents conceptualized good end-of-life care and dignity. Methods: The authors conducted an electronic survey of 116 psychiatric residents at the University of Toronto. The survey…

  16. Good end-of-life care according to patients and their GPs

    Borgsteede, Sander D.; Graafland-Riedstra, Corrie; Deliens, Luc; Francke, Anneke L.; van Eijk, Jacques ThM; Willems, Dick L.

    2006-01-01

    BACKGROUND: Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. AIM: To explore the aspects valued by both patients and GPs in

  17. The broad spectrum of unbearable suffering in end of life cancer studied in dutch primary care

    Ruijs, C.D.M.; Kerkhof, A.J.F.M.; van der Wal, G.; Onwuteaka-Philipsen, B.D.

    2012-01-01

    Background: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients

  18. Do Older Korean Immigrants Engage in End-of-Life Communication?

    Ko, Eunjeong; Roh, Soonhee; Higgins, Doreen

    2013-01-01

    End-of-life communication is an important process as it allows individuals' treatment preferences to be known, yet not every culture is receptive to such discussions. Planning for end-of-life care is not readily supported in Asian culture, and little is known about individuals' communication with family and health care professionals among older…

  19. Looking at the end-of-life directive and challenges in recycling

    Smink, Carla

    2004-01-01

    The article deals with end-of-life vechile regulations. Focus is on the European end-of-life vechile directive (2000/53/EC) and how Denmark and the Netherlands have dealt with the regulations in the past 30 years....

  20. Good end-of-life care according to patients and their GPs.

    Borgsteede, S.D.; Graafland-Riedstra, C.; Deliens, L.; Francke, A.L.; Eijk, J.T.M. van; Willems, D.L.

    2006-01-01

    Background: Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. Aim: To explore the aspects valued by both patients and GPs in

  1. Rural versus urban differences in end-of-life care for lung cancer patients in Germany.

    Walter, Julia; Tufman, Amanda; Leidl, Reiner; Holle, Rolf; Schwarzkopf, Larissa

    2018-07-01

    To assess rural-urban differences in healthcare utilization and supportive care at the end-of-life in German lung cancer patients. We identified 12,929 patients with incident lung cancer in 2009 from claims data and categorized them to four district types (major city, urban, rural, remote rural). We compared site of death, unplanned hospitalizations, hospital days, outpatient doctor, general practitioner (GP) and home visits, structured palliative care, therapy with antidepressants, pain relief medication and chemotherapy, and therapeutic puncturing in the last 30 and 14 days of life using mixed models with logistic link function for binary outcomes and log link function for count data. We adjusted all models by age, sex, comorbidities, metastases location and presence of multiple tumors at diagnosis, survival in months, and type of tumor-directed treatment. We found significant differences in two of the outcomes measured. The likelihood of > 14 hospital days in the last 30 days was significantly higher in rural districts than in remote rural districts (1.27 [1.05, 1.52], p = 0.0003). The number of visits to the GP in the last 30 days of life was significantly lower in urban districts than in remote rural districts (β = - 0.19 [- 0.32, - 0.06], p = <0.0001). No other endpoints were associated with regional differences. Triggering factors for high and low utilization of healthcare were mostly age, comorbidities, and prior anticancer treatment. Healthcare utilization and supportive care did not differ significantly between different district types. Results reject the hypothesis of regional inequity in end-of-life care of lung cancer patients in Germany.

  2. Pain and symptom management in palliative care and at end of life.

    Wilkie, Diana J; Ezenwa, Miriam O

    2012-01-01

    The purpose of this review is to provide a literature update of the research published since 2004 on pain and symptom management in palliative care and at end of life. Findings suggest that pain and symptoms are inadequately assessed and managed, even at the end of life. Although not pervasive, there is evidence of racial/ethnic disparities in symptom management in palliative care and at end of life. There is a need for a broader conceptualization and measurement of pain and symptom management as multidimensional experiences. There is insufficient evidence about mechanisms underlying pain at end of life. Although there are advances in the knowledge of pain as a multidimensional experience and the many symptoms that occur sometimes with pain, gaps remain. One approach to addressing the gaps will involve assessment and management of pain and symptoms as multidimensional experiences in people receiving palliative care and at end of life. Copyright © 2012 Elsevier Inc. All rights reserved.

  3. Involving healthcare professionals and family carers in setting research priorities for end-of-life care.

    Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn

    2017-02-02

    It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.

  4. Effects of a Simulation Exercise on Nursing Students' End-of-Life Care Attitudes.

    Dame, Linda; Hoebeke, Roberta

    2016-12-01

    Students consider end-of-life care content in their nursing curricula to be inadequate and deficient in promoting the development of the necessary attitudes to care for dying patients. Research identifies simulation as an effective teaching strategy to examine nursing students' attitudes toward end-of-life care. An end-of-life care simulation was developed, implemented, and evaluated. Attitudes toward caring for dying patients were measured pre- and postsimulation on a convenience sample of 57 sophomore nursing students using the Frommelt Attitudes Toward Care of the Dying Scale-Form B. Repeated measures of ANOVA on outcome variables evaluated student attitudes toward end-of-life care. Participation in an end-of-life care simulation resulted in more positive student attitudes toward caring for dying patients (p life care in nursing curricula and improve student attitudes toward caring for dying patients. [J Nurs Educ. 2016;55(12):701-705.]. Copyright 2016, SLACK Incorporated.

  5. Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life.

    Huynh, Elisabeth; Coast, Joanna; Rose, John; Kinghorn, Philip; Flynn, Terry

    2017-09-01

    End of life care may have elements of value that go beyond health. A generic measure of the benefits of end of life care could be helpful to decision makers. Such a measure, based on the capability approach, has recently been developed: the ICECAP Supportive Care Measure. This paper reports the first valuation exercise for that measure, with data from 6020 individuals collected from an on-line general population panel during June 2013. Individuals were asked to complete a stated choice experiment that combined best-worst scaling and a standard discrete choice experiment. Analysis of the best-worst data used limited dependent variable models within the random utility framework including the multinomial logit models and latent class choice model analysis. Exploratory steps were taken to determine the similarity of the best-worst and DCE data before formal testing and pooling of the two data sources. Combined data were analysed in a heteroscedastic conditional logit model adjusting for continuous scale. Two sets of tariffs were generated, one from the best-worst data capturing only main effects, and a second from the pooled data allowing for two-way interactions. Either tariff could be used in economic evaluation of interventions at the end of life, although there are advantages and disadvantages with each. This extensive valuation exercise for the ICECAP Supportive Care Measure, with a large number of members of the general public, could be complemented in the future with best-worst scaling studies amongst those experiencing the end of life. Copyright © 2017 Elsevier Ltd. All rights reserved.

  6. Evaluation of different end-of-life management alternatives for used natural cork stoppers through life cycle assessment.

    Demertzi, Martha; Dias, Ana Cláudia; Matos, Arlindo; Arroja, Luís Manuel

    2015-12-01

    An important aspect of sustainable development is the implementation of effective and sustainable waste management strategies. The present study focuses on a Life Cycle Assessment (LCA) approach to different waste management strategies for natural cork stoppers, namely incineration at a municipal solid waste incinerator, landfilling in a sanitary landfill, and recycling. In the literature, there are no LCA studies analyzing in detail the end-of-life stage of natural cork stoppers as well as other cork products. In addition, cork is usually treated as wood at the end-of-life stage. Thus, the outcome of this study can provide an important insight into this matter. The results showed that different management alternatives, namely incineration and recycling, could be chosen depending on the impact category considered. The former alternative presented the best environmental results in the impact categories of climate change, ozone depletion and acidification, while the latter for photochemical ozone formation and mineral and fossil resource depletion. The landfilling alternative did not present the best environmental performance in any of the impact categories. However, when the biogenic carbon dioxide emission was assessed for the climate change category, the landfilling alternative was found to be the most effective since most of the biogenic carbon would be permanently stored in the cork products and not emitted into the atmosphere. A sensitivity analysis was performed and the results showed that there are various parameters that can significantly influence the results (e.g., carbon content in cork and decay rate of cork in the landfill). Thus, LCA studies should include a detailed description concerning their assumptions when the end-of-life stage is included in the boundaries since they can influence the results, and furthermore, to facilitate the comparison of different end-of-life scenarios. The present study and the obtained results could be useful for the

  7. [Shared medical decision making in gynaecology].

    This, P; Panel, P

    2010-02-01

    When two options or more can be chosen in medical care, the final decision implies two steps: facts analysis, and patient evaluation of preferences. Shared Medical Decision-Making is a rational conceptual frame that can be used in such cases. In this paper, we describe the concept, its practical modalities, and the questions raised by its use. In gynaecology, many medical situations involve "sensitive preferences choice": for example, contraceptive choice, menorrhagia treatment, and approach of menopause. Some tools from the "Shared Medical Decision Making" concept are useful to structure medical consultations, to convey information, and to reveal patients preferences. Decision aid are used in clinical research settings, but some of them may also be easily used in usual practice, and help physicians to improve both quality and traceability of the decisional process. Copyright 2009 Elsevier Masson SAS. All rights reserved.

  8. End-of-life care in COPD: A survey carried out with Portuguese Pulmonologists

    C. Gaspar

    2014-05-01

    Full Text Available Introduction: End-of-life (EoL care is a major component in the management of patients with advanced COPD. Patient-physician communication is essential in this process. Aim: To evaluate the practice of Portuguese Pulmonologists in EoL communication and palliative care in COPD. Methods: An on-line survey was sent to physicians affiliated to the Portuguese Pneumology Society. Results: We obtained 136 answers from 464 eligible participants (29.3%. About half of the physicians reported that they have rarely introduced EoL discussions with their COPD patients (48.5%. Most had never/rarely suggested decision-making on the use of invasive mechanical ventilation (68.4%. Discussions were described as occurring mostly during/after a major exacerbation (53.7%. Only 37.5% of participants reported treating dyspnoea with opioids frequently/always. Only 9.6% stated that they never/rarely treated anxiety/depression. Most participants perceive the discussion of EoL issues as being difficult/very difficult (89.0%. The reasons most frequently given were feeling that patients were not prepared for this discussion (70.0%, fear of taking away a patient's hope (58.0% and lack of training (51.0%. Conclusion: Patient and medical staff EoL communication in COPD is still not good enough. Training in this area and the creation of formal protocols to initiate EoL have been identified as major factors for improvement. Resumo: Introdução: Os cuidados terminais (EoL são um componente importante do tratamento de doentes com doença pulmonar obstrutiva crónica (DPOC avançada. A comunicação entre o doente e o médico é fundamental neste processo. Objetivo: Avaliar a prática dos pneumologistas portugueses na comunicação sobre o fim de vida e os cuidados paliativos na DPOC. Métodos: Foi enviado um inquérito online para os médicos sócios da Sociedade Portuguesa de Pneumologia. Resultados: Recebemos 136 respostas dos 464 participantes elegíveis (29,3%. Cerca de metade

  9. Medical practice and legal background of decisions for severely ill newborn infants: viewpoints from seven European countries.

    Sauer, P J J; Dorscheidt, J H H M; Verhagen, A A E; Hubben, J H

    2013-02-01

    To comparing attitudes towards end-of-life (EOL) decisions in newborn infants between seven European countries. One paediatrician and one lawyer from seven European countries were invited to attend a conference to discuss the practice of EOL decisions in newborn infants and the legal aspects involved. All paediatricians/neonatologists indicated that the best interest of the child should be the leading principle in all decisions. However, especially when discussing cases, important differences in attitude became apparent, although there are no significant differences between the involved countries with regard to national legal frameworks. Important differences in attitude towards neonatal EOL decisions between European countries exist, but they cannot be explained solely by medical or legal reasons. ©2012 The Author(s)/Acta Paediatrica ©2012 Foundation Acta Paediatrica.

  10. Mediation Approaches at the Beginning or End of Life.

    Howe, Edmund G

    2015-01-01

    The approaches used in mediation may help ethics consultants, especially in difficult cases. In this piece, I primarily discuss these techniques. I also discuss how clinicians may be of the most help to parents of infants with severe genetic conditions, to research participants, and to patients who may be at risk for Alzheimer's disease and their surrogate decision makers. Copyright 2015 The Journal of Clinical Ethics. All rights reserved.

  11. Simulation-based end-of-life care training during surgical clerkship: assessment of skills and perceptions.

    Parikh, Priti P; Brown, Ronald; White, Mary; Markert, Ronald J; Eustace, Rosemary; Tchorz, Kathryn

    2015-06-15

    Assessment of interpersonal and psychosocial competencies during end-of-life care training is essential. This study reports the relationship between simulation-based end-of-life care Objective Structured Clinical Examination ratings and communication skills, trust, and self-assessed empathy along with the perceptions of students regarding their training experiences. Medical students underwent simulation-based end-of-life care OSCE training that involved standardized patients who evaluated students' communication skills and physician trust with the Kalamazoo Essential Elements Communication Checklist and the Wake Forest Physician Trust Scale. Students also completed the Jefferson Scale of Physician Empathy. Pearson correlation was used to examine the relationship between OSCE performance grades and communication, trust, and empathy scores. Student comments were analyzed using the constant comparative method of analysis to identify dominant themes. The 389 students (mean age 26.6 ± 2.8 y; 54.5% female) had OSCE grades that were positively correlated with physician trust scores (r = 0.325, P training to be a valuable learning experience and appreciated its placement early in clinical training. We found that simulation-based OSCE training in palliative and end-of-life care can be effectively conducted during a surgery clerkship. Moreover, the standardized patient encounters combined with the formal assessment of communication skills, physician trust, and empathy provide feedback to students at an early phase of their professional life. The positive and appreciative comments of students regarding the opportunity to practice difficult patient conversations suggest that attention to these professional characteristics and skills is a valued element of clinical training and conceivably a step toward better patient outcomes and satisfaction. Copyright © 2015 Elsevier Inc. All rights reserved.

  12. Communicating With Dying Patients and Their Families: Multimedia Training in End-of-Life Care.

    Chappell, Phylliss M; Healy, Jennifer; Lee, Shuko; Medellin, Glen; Sanchez-Reilly, Sandra

    2017-08-01

    The need for end-of-life (EOL), high-impact education initiatives to prepare medical students to communicate with dying patients and their families and to cope with issues of death and dying, is well recognized. Third-year medical students (n = 224), during their ambulatory rotation, completed a multimedia EOL curriculum, which included pre-/posttests, an online case-based module, didactic presentation, and a tablet computer application designed to demonstrate the signs and symptoms seen in the last hours of life for families of dying patients. Pre- and posttests were compared using Pearson χ 2 or Fisher exact test, and improvement was measured by weighted κ coefficient. On preintervention surveys, the majority of students demonstrated positive attitudes toward the care of dying patients and their families. Despite this high pretest positive attitude, there was a statistically significant overall positive attitude change after the intervention. The lowest pretest positive attitudes and lowest posttest positive attitude shifts, although all statistically improved, involved addressing the thoughts and feelings of dying patients and in coping with their own emotional response. Medical students exposure to this multimedia EOL curriculum increases positive attitudes in caring for dying patients and their families.

  13. MINDS - Medical Information Network Decision Support System

    Armenian, H. K

    2008-01-01

    .... The increase in and complexity of medical data at various levels of resolution has increased the need for system level advancements in clinical decision support systems that provide computer-aided...

  14. Family interests and medical decisions for children.

    Baines, Paul

    2017-10-01

    Medical decisions for children are usually justified by the claim that they are in a child's best interests. More recently, following criticisms of the best interests standard, some advocate that the family's interests should influence medical decisions for children, although what is meant by family interests is often not made clear. I argue that at least two senses of family interests may be discerned. There is a 'weak' sense (as the amalgamated interests of family members) of family interests and a 'strong' sense (that the family itself has interests over and above the interests of individuals). I contend that there are problems with both approaches in making medical decisions for children but that the weak sense is more plausible. Despite this, I argue that claims for family interests are not helpful in making medical decisions for children. © 2017 John Wiley & Sons Ltd.

  15. Pharmacy Students' Attitudes Toward Death and End-of-life Care

    Broeseker, Amy E.

    2010-01-01

    Objectives To assess pharmacy students' attitudes toward death and end-of-life care. Methods Third-year pharmacy students enrolled in the Ethics in Christianity and Health Care course were administered a survey instrument prior to introduction of the topic of end-of-life care. Students' attitudes toward different professions' roles in end-of-life care and their comfort in discussing end-of-life issues were assessed. The survey instrument was readministered to the same students at the end of their fourth year. Results On most survey items, female students responded more favorably toward death and end-of-life care than male students. One exception was the perceived emotional ability to be in the room of a dying patient or loved one. Post-experiential survey responses were generally more favorable toward death and end-of-life care than were pre-discussion responses. Conclusions In general, when surveyed concerning death and end-of-life care, female students responded more favorably than male students, and responses at the end of the fourth year were more favorable than at the beginning of the course. PMID:21045946

  16. Risk-informed prediction of feeder end of life

    Jyrkama, M.; Pandey, M.

    2011-01-01

    The operating life of feeder piping is negatively impacted by flow accelerated corrosion (FAC). In this study, an assessment of a large set of inspection data reveals that FAC in feeders is a relatively stationary process, with variability only at the local scale. Given the added uncertainty from inspection coverage, a new method for estimating the thinning rate and feeder EOL is developed using a probabilistic approach. The results of the study illustrate the benefits of the methodology in supporting risk-informed decision making at the station by quantifying the present and incremental risk in the feeder system over time. (author)

  17. Risk-informed prediction of feeder end of life

    Jyrkama, M.; Pandey, M. [Univ. of Waterloo, Ontario (Canada)

    2011-07-01

    The operating life of feeder piping is negatively impacted by flow accelerated corrosion (FAC). In this study, an assessment of a large set of inspection data reveals that FAC in feeders is a relatively stationary process, with variability only at the local scale. Given the added uncertainty from inspection coverage, a new method for estimating the thinning rate and feeder EOL is developed using a probabilistic approach. The results of the study illustrate the benefits of the methodology in supporting risk-informed decision making at the station by quantifying the present and incremental risk in the feeder system over time. (author)

  18. End of life care preferences among people of advanced age: LiLACS NZ.

    Gott, Merryn; Frey, Rosemary; Wiles, Janine; Rolleston, Anna; Teh, Ruth; Moeke-Maxwell, Tess; Kerse, Ngaire

    2017-12-19

    Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Māori. Data on end of life preferences were gathered from 147 Māori (aged >80 years) and 291 non- Māori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Māori specific subsections was used. The top priority for both Māori and non-Māori participants at end of life was 'not being a burden to my family'. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Māori participants wanted spiritual practices at end of life than male Māori participants. More male non-Māori participants wanted to be resuscitated than female non- Māori participants. That a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants' top concern - namely not being a burden - has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated.

  19. [Supporting the end of life in a therapeutic coordination apartment].

    Cousineau, Jean-Luc; Thévenin, Laurent

    2016-02-01

    Therapeutic coordination apartments are medical-social structures which provide accommodation to desocilialized people. For the last 25 years, the association Cordia has been supporting people with debilitating chronic diseases in situations of precarity. The multi-disciplinary approach also ensures that terminally-ill residents are taken care of right up until their last moments. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  20. Danish general practitioners’ self-reported competences in end-of-life care

    Winthereik, Anna; Neergaard, Mette; Vedsted, Peter; Jensen, Anders

    2016-01-01

    Objective General practitioners (GPs) are pivotal in end-of-life (EOL) care. This study aimed to assess GP-reported provision of EOL care and to assess associations with GP characteristics. Design Population-based questionnaire study. Setting Central Denmark Region with approximately 1.3 million inhabitants. Subjects All 843 active GPs in the Central Denmark Region were sent a questionnaire by mail. Main outcome measures Responses to 18 items concerning four aspects: provision of EOL care to patients with different diagnosis, confidence with being a key worker, organisation of EOL care and EOL skills (medical and psychosocial). Results In total, 573 (68%) GPs responded. Of these, 85% often/always offered EOL care to cancer patients, which was twice as often as to patients with non-malignancies (34–40%). Moreover, 76% felt confident about being a key worker, 60% had a proactive approach, and 58% talked to their patients about dying. Only 9% kept a register of patients with EOL needs, and 19% had specific EOL procedures. GP confidence with own EOL skills varied; from 55% feeling confident using terminal medications to 90% feeling confident treating nausea/vomiting. Increasing GP age was associated with increased confidence about being a key worker and provision of EOL care to patients with non-malignancies. In rural areas, GPs were more confident about administering medicine subcutaneously than in urban areas. Conclusion We found considerable diversity in self-reported EOL care competences. Interventions should focus on increasing GPs’ provision of EOL care to patients with non-malignancies, promoting better EOL care concerning organisation and symptom management. KEY POINTSGPs are pivotal in end-of-life (EOL) care, but their involvement has been questioned. Hence, GPs’ perceived competencies were explored.GPs were twice as likely to provide EOL care for patients with cancer than for patients with non-malignancies.EOL care was lacking clear organisation in

  1. Embracing a broad spirituality in end of life discussions and advance care planning.

    Churchill, Larry R

    2015-04-01

    Advance care planning for end of life typically focuses on the mechanics of completing living wills and durable power of attorney documents. Even when spiritual aspects of end of life care are discussed, the dominant assumptions are those of traditional religious systems. A broad view of spirituality is needed, one that may involve traditional religious beliefs but also includes personal understandings of what is holy or sacred. Embracing this broad practice of spirituality will help both familial and professional caregivers honor an essential aspect of end of life discussions and promote greater discernment of the deep meaning in advance care documents.

  2. American Society for Pain Management Nursing position statement: pain management at the end of life.

    Reynolds, Janice; Drew, Debra; Dunwoody, Colleen

    2013-09-01

    Pain at the end of life continues to be of great concern as it may be unrecognized or untreated. While nurses have an ethical obligation to reduce suffering at the end of life, barriers remain regarding appropriate and adequate pain management at the end of life. This position statement from the American Society for Pain Management Nursing contains recommendations for nurses, prescribers, and institutions that would improve pain management for this vulnerable population. Copyright © 2013 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

  3. Multicultural long-term care nurses’ perceptions of factors influencing patient dignity at the end of life.

    Periyakoil, Vyjeyanthi S; Stevens, Marguerite; Kraemer, Helena

    2013-03-01

    The goal of this mixed-methods study was to characterize the perceptions of multicultural long-term care nurses about patient dignity at the end-of-life (EOL). The study was conducted in a large, urban, long-term care (LTC) facility. Participants were 45 long-term care nurses and 26 terminally ill nursing home residents. Nurses completed an openended interview about their perceptions of the concept of dying with dignity, and the data were analyzed using grounded theory methods. Main themes identified as promoting resident dignity at the EOL included treating them with respect, helping them prepare for the EOL, promoting shared decision-making, and providing high-quality care. The nurses’ cultural and religious backgrounds influenced their perceptions of what constitutes dignity-conserving care. Foreign-born nurses stressed the need for EOL rituals, but this was strikingly absent in the statements of U.S.-born nurses. Foreign-born Catholic nurses stated that the dying experience should not be altered using analgesics to relieve suffering or by attempts to hasten death by forgoing curative therapy or by other means. Nurses and terminally ill individuals completed the Dignity Card-sort Tool (DCT). A comparison of the DCT responses of the LTC nurses cohort with those of the terminally ill participants revealed that the nurses felt patient dignity was eroded when patient wishes were not followed and when they were treated without respect. In contrast, dying LTC residents felt that poor medical care and loss of ability to choose care options were the most important factors leading to erosion of dignity.

  4. A systematic review of religious beliefs about major end-of-life issues in the five major world religions.

    Chakraborty, Rajshekhar; El-Jawahri, Areej R; Litzow, Mark R; Syrjala, Karen L; Parnes, Aric D; Hashmi, Shahrukh K

    2017-10-01

    The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL). This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded. Our search strategy generated 968 references, 40 of which were included for review, while 5 studies were added from reference lists. Whenever possible, we organized the results into five categories that would be clinically meaningful for palliative care practices at the EoL: advanced directives, euthanasia and physician-assisted suicide, physical requirements (artificial nutrition, hydration, and pain management), autopsy practices, and other EoL religious considerations. A wide degree of heterogeneity was observed within religions, depending on the country of origin, level of education, and degree of intrinsic religiosity. Our review describes the religious practices pertaining to major EoL issues and explains the variations in EoL decision making by clinicians and patients based on their religious teachings and beliefs. Prospective studies with validated tools for religiosity should be performed in the future to assess the impact of religion on EoL care.

  5. Exploring the role of practical nursing wisdom in the care of patients with urinary problems at the end of life: a qualitative interview study.

    Farrington, Naomi; Fader, Mandy; Richardson, Alison; Sartain, Samantha

    2015-10-01

    This study examined how nurses understand urinary problems at the end of life, and identified sources of evidence upon which they base their practice through semi-structured qualitative interviews. The aim was to decide whether research or interventions (such as formulation of best practice guidelines) could improve continence care at the end of life. There is little evidence in nursing literature to indicate how nurses should manage urinary problems at the end of life. Evidence is particularly lacking regarding the insertion of indwelling urinary catheters. This was an applied qualitative interview study which used the 'guided interview' approach. Twelve participants who worked in two hospital wards and one hospice were interviewed about management of patients with urinary problems approaching the end of life. The transcribed interviews were organised using the qualitative analysis software qsr NVivo version 10 (QSR International, Melbourne, Australia). Constant comparison was used to analyse the interviews. The patient and their family were a key concern of all interviewees. Participants focused on processes including: giving care, making decisions, managing uncertainty and assimilating knowledge. These processes are mediated by 'phronesis' or practical wisdom. Within each of the processes (giving care, making decisions, managing uncertainty and assimilating knowledge), participants approached each patient as an individual, using experience, patient wishes, available resources, clinical knowledge and advice from colleagues to provide care. A generalised set of guidelines on managing urinary problems at the end of life would probably not be useful. There is uncertainty about what constitutes best practice in specific areas of continence care at the end of life such as indwelling urinary catheter insertion. A careful approach is needed to ensure that the intellectual and moral knowledge that constitutes practical wisdom is shared and developed throughout teams.

  6. Pharmacologic pearls for end-of-life care.

    Clary, Patrick L; Lawson, Phil

    2009-06-15

    As death approaches, a gradual shift in emphasis from curative and life prolonging therapies toward palliative therapies can relieve significant medical burdens and maintain a patient's dignity and comfort. Pain and dyspnea are treated based on severity, with stepped interventions, primarily opioids. Common adverse effects of opioids, such as constipation, must be treated proactively; other adverse effects, such as nausea and mental status changes, usually dissipate with time. Parenteral methylnaltrexone can be considered for intractable cases of opioid bowel dysfunction. Tumor-related bowel obstruction can be managed with corticosteroids and octreotide. Therapy for nausea and vomiting should be targeted to the underlying cause; low-dose haloperidol is often effective. Delirium should be prevented with normalization of environment or managed medically. Excessive respiratory secretions can be treated with reassurance and, if necessary, drying of secretions to prevent the phenomenon called the "death rattle." There is always something more that can be done for comfort, no matter how dire a situation appears to be. Good management of physical symptoms allows patients and loved ones the space to work out unfinished emotional, psychological, and spiritual issues, and, thereby, the opportunity to find affirmation at life's end.

  7. An analysis of medical decision making

    Lusted, L.B.

    1977-01-01

    Medical decision-making studies continue to focus on two questions: How do physicians make decisions and how should physicians make decisions. Researchers pursuing the first question emphasize human cognitive processes and the programming of symbol systems to model the observed human behaviour. Those researchers concentrating on the second question assume that there is a standard of performance against which physicians' decisions can be judged, and to help the physician improve his performance an array of tools is proposed. These tools include decision trees, Bayesian analysis, decision matrices, receiver operating characteristic (ROC) analysis, and cost-benefit considerations including utility measures. Both questions must be answered in an ethical context where ethics and decision analysis are intertwined. (author)

  8. [End-of-life and euthanasia, an intensive care team's experience].

    Baruteau, J; Devilliers, A; François, I; Blettery, B

    2002-04-20

    The improvement in the medical techniques used in intensive care units over the last 30 years has led to a different approach towards the end of life and death. Our study has underlined the feelings of all the staff of an intensive care unit towards the various difficulties engendered by death and the question of euthanasia. Conducted in the particular context of an intensive care unit, this work is a survey on the staff's feelings and factual experiences, in order to promote discussions on this painful subject. Sixty-one percent of the persons surveyed declared that euthanasia was ethically acceptable. The patients take the initiative of the request (92%) and the cohesion of the team is unanimously required. Pain and corporeal deterioration are the first motivations. Euthanasia is a difficult question, sometimes impassionate, and the care units have to consider whether they are concerned by the quality of their patients' care. The press regularly issues reports on this. But beyond these quantified questions, the staff who care for these ill patients are often very discreet. The regular confrontation with this situation changes the medical team's view of the profession.

  9. “This is Our Last Stop”: Negotiating End of Life Transitions in Assisted Living

    Ball, Mary M.; Kemp, Candace L.; Hollingsworth, Carole; Perkins, Molly M.

    2014-01-01

    Where people die has important implications for end-of-life (EOL) care. Assisted living (AL) increasingly is becoming a site of EOL care and a place where people die. AL residents are moving in older and sicker and with more complex care needs, yet AL remains largely a non-medical care setting that subscribes to a social rather than medical model of care. The aims of this paper are to add to the limited knowledge of how EOL is perceived, experienced, and managed in AL and to learn how individual, facility, and community factors influence these perceptions and experiences. Using qualitative methods and a grounded theory approach to study eight diverse AL settings, we present a preliminary model for how EOL care transitions are negotiated in AL that depicts the range of multilevel intersecting factors that shape EOL processes and events in AL. Facilities developed what we refer to as an EOL presence, which varied across and within settings depending on multiple influences, including, notably, the dying trajectories and care arrangements of residents at EOL, the prevalence of death and dying in a facility, and the attitudes and responses of individuals and facilities towards EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on residents and staff. Our findings indicate that in the majority of cases, EOL care must be supported by collaborative arrangements of care partners and that hospice care is a critical component. PMID:24984903

  10. End-of-life care of women with gynecologic malignancies: a pilot study.

    Nevadunsky, Nicole S; Spoozak, Lori; Gordon, Sharon; Rivera, Enid; Harris, Kimala; Goldberg, Gary L

    2013-03-01

    There are limited data regarding the end-of-life care for women with gynecologic malignancies. We set out to generate pilot data describing the care that women with gynecologic malignancies received in the last 6 months of life. Patient demographics, patterns of care, and utilization of palliative medicine consultation services were evaluated. One hundred patients who died of gynecologic malignancies were identified in our institutional database. Only patients who had received treatment with a gynecologic oncologist within 1 year of death were included. Medical records were reviewed for relevant information. Data were abstracted from the electronic medical record, and analyses were made using Student t test and Mann-Whitney U test with SPSS software. The mean age of patients was 60 years (range, 30-94 years). Racial/ethnic distribution was as follows: 38%, white; 34%, black; and 15%, Hispanic. Seventy-five percent of patients received chemotherapy within the last 6 months of life, and 30% received chemotherapy within the last 6 weeks of life. The median number of days hospitalized during the last 6 months of life was 24 (range, 0-183 days). During the last 6 months of life, 19% were admitted to the intensive care unit, 17% were intubated, 5% had terminal extubation, and 13% had cardiopulmonary resuscitative efforts. Sixty-four percent had a family meeting, 50% utilized hospice care, and 49% had palliative medicine consultations. There was a significant difference in hospice utilization when comparison was made between patients who had 14 days or more from consultation until death versus patients who had 14 days or less or no consultation, 21 (72%) versus 29 (41%), P = 0.004. Patients who were single were less likely to have a palliative medicine consultation, P = 0.005. End-of-life care for patients with gynecologic malignancies often includes futile, aggressive treatments and invasive procedures. It is unknown whether these measures contribute to longevity or

  11. End-of-life training for paid carers working with people with learning disabilities.

    Codling, Mary; Knowles, Jane; Vevers, Ann

    2014-04-01

    People with learning disabilities are living longer lives. Over the past few years, research has explored the needs of people with learning disabilities, their families and learning disability professionals in relation to end-of-life care and death. However, little is known about the needs of paid carers and their experience of end-of-life care. This article discusses the development, implementation and evaluation of a study day about end-of-life care that was delivered to paid carers on two separate occasions in Berkshire Healthcare NHS Foundation Trust. A total of 43 paid carers attended and the days were well evaluated. The need for further training for paid carers who work with people with learning disabilities at the end of life was highlighted.

  12. End-of-Life Indicators for NIMA's High-Performance Cesium Frequency Standards

    Brock, C; Tolman, B. W; Taylor, R. E

    2002-01-01

    .... The mean lifetime of the cesium-beam tube (CBT) is approximately 6 years; failure or end-of-life of the CBT is a significant cause in the reduction of data used to produce the NIMA GPS precise ephemeris...

  13. Graduate Students' Reflections on Elder and End-of-Life Care for Prisoners.

    Baumann, Steven L; Todaro-Franceschi, Vidette

    2017-07-01

    The focus of this report was graduate nursing students' reflections on elder and end-of-life care for prisoners. The personal reflections of 21 graduate nursing students who attended a presentation by Susan J. Loeb on October 26, 2016 were included in this report. The title of the presentation was "Enhancing End-of-Life Care for Prisoners Through Partnering With the Prison Community." The student essays were synthesized to construct a summary essay, from which four themes were identified: aging in prison, dying in prison, ethical and professional issues in the elder and end-of-life care of prisoners, and ethical and professional issues in research involving elderly and end-of-life care of prisoners. These findings were interpreted from a global perspective in light of two different nursing perspectives: the humanbecoming tradition and the science of unitary human beings.

  14. How Can an Emergency Department Assist Patients and Caregivers at the End of Life?

    ... And Caregivers At The End Of Life? How Can An Emergency Department Assist Patients And Caregivers At ... your family. Five ways that the Emergency Department can help 1. Assist in the recognition and understanding ...

  15. Hospital executive leadership: a critical component for improving care at the end of life.

    Cooney, James P; Landers, Glenn M; Williams, Julianna M

    2002-01-01

    End-of-life care and its planning by individuals, in concert with their families and professional healthcare givers, pose important social, legal, and ethical issues. The authors evaluate the results of a multi-year (1997-2001) collaborative effort among representatives of Georgia healthcare providers, healthcare payers, and the general public that was designed to (a) improve end-of-life care through a community-focused field effort to increase public awareness, execution, and institutional management of advance directives and (b) impact institutional and state government systems and policies around end-of-life care. The authors conclude that a proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care and offer practical recommendations to hospital leaders to affect real change in their institutions.

  16. Exploring Health Care Providers' Views About Initiating End-of-Life Care Communication.

    Nedjat-Haiem, Frances R; Carrion, Iraida V; Gonzalez, Krystana; Ell, Kathleen; Thompson, Beti; Mishra, Shiraz I

    2017-05-01

    Numerous factors impede effective and timely end-of-life (EOL) care communication. These factors include delays in communication until patients are seriously ill and/or close to death. Gaps in patient-provider communication negatively affect advance care planning and limit referrals to palliative and hospice care. Confusion about the roles of various health care providers also limits communication, especially when providers do not coordinate care with other health care providers in various disciplines. Although providers receive education regarding EOL communication and care coordination, little is known about the roles of all health care providers, including nonphysician support staff working with physicians to discuss the possibility of dying and help patients prepare for death. This study explores the perspectives of physicians, nurses, social workers, and chaplains on engaging seriously ill patients and families in EOL care communication. Qualitative data were from 79 (medical and nonmedical) providers practicing at 2 medical centers in Central Los Angeles. Three themes that describe providers' perceptions of their roles and responsibility in talking with seriously ill patients emerged: (1) providers' roles for engaging in EOL discussions, (2) responsibility of physicians for initiating and leading discussions, and (3) need for team co-management patient care. Providers highlighted the importance of beginning discussions early by having physicians lead them, specifically due to their medical training and need to clarify medical information regarding patients' prognosis. Although physicians are a vital part of leading EOL communication, and are at the center of communication of medical information, an interdisciplinary approach that involves nurses, social workers, and chaplains could significantly improve patient care.

  17. Design for life-cycle profit with simultaneous consideration of initial manufacturing and end-of-life remanufacturing

    Kwak, Minjung; Kim, Harrison

    2015-01-01

    Remanufacturing is emerging as a promising solution for achieving green, profitable businesses. This article considers a manufacturer that produces new products and also remanufactured versions of the new products that become available at the end of their life cycle. For such a manufacturer, design decisions at the initial design stage determine both the current profit from manufacturing and future profit from remanufacturing. To maximize the total profit, design decisions must carefully consider both ends of product life cycle, i.e. manufacturing and end-of-life stages. This article proposes a decision-support model for the life-cycle design using mixed-integer nonlinear programming. With an aim to maximize the total life-cycle profit, the proposed model searches for an (at least locally) optimal product design (i.e. design specifications and the selling price) for the new and remanufactured products. It optimizes both the initial design and design upgrades at the end-of-life stage and also provides corresponding production strategies, including production quantities and take-back rate. The model is extended to a multi-objective model that maximizes both economic profit and environmental-impact saving. To illustrate, the developed model is demonstrated with an example of a desktop computer.

  18. Inter-organisation communication for end of life care.

    Thomas, Paul

    2009-01-01

    Background Poor communication between in-hours and out-of-hours (OoH) general practitioners (GPs) causes unwanted admissions to hospital of patients who want to die at home Setting A GP OoH service in West London (London Central and West Unscheduled Care Service) used by 159 general practices from four primary care trusts Question What helps to avoid hospital admission of patients who want to die at home when a crisis occurs in the OoH period? Methods Whole system participatory action research, with four stages: 1. engage stakeholders; 2. understand the initial situation; 3. re-design the system; 4. action for change Results The following help to avoid undesirable hospital admission of a dying person who has a crisis in the OoH period: 1. a register of vulnerable adults; 2. records at home; 3. key worker(s); 4. home interventions; 5. day-time practitioner communication; 6. a development and governance group; 7. speedy discharge from hospital; 8. decision support for OoH GPs. Discussion This project revealed a useful set of policies to help avoid unnecessary OoH admission to hospital, especially improved communication between day-time GPs and OoH GPs. The approach combined whole system participatory action research with systems modelling and this helped the issues to be revealed quickly and cheaply. Furthermore, including leaders from partner organisations at each stage of the inquiry has encouraged shared purpose and produced champions to move forward the project recommendations. Some changes have already happened.

  19. Personal determinants of nurses' burnout in end of life care.

    Gama, Georgeana; Barbosa, Filipe; Vieira, Margarida

    2014-10-01

    Our aim is to identify socio-demographic, professional exposure to dying, training degree and personal factors relevant to burnout dimensions in nurses coping with death issues. A sample of 360 nurses (response rate 70.6%) from internal medicine, oncology, haematology and palliative care departments of five health institutions answered to a socio-demographic and professional questionnaire, Maslach Burnout Inventory, Death Attitude Profile Scale, Purpose in Life Test and Adult Attachment Scale. No significant differences were found between medical departments in burnout scores except when comparing those with palliative care department which showed significant lesser levels of emotional exhaustion (t = 2.71; p exhaustion and depersonalization are negative, sequentially determined respectively by purpose in life, dependent attachment, fear of death attitude and by purpose in life, dependent attachment, years of professional experience and personal accomplishment by positive purpose on life and secure attachment. We conclude for the protective value of factors such as meaning and purpose in life, secure attachment and attitude towards death, through the various burnout dimensions that shows the need to develop under and postgraduate training strategies in these specific areas. Crown Copyright © 2014. Published by Elsevier Ltd. All rights reserved.

  20. Training Providers and Patients to Talk about End-of-Life Care

    Failing to discuss the transition from active cancer treatment to end-of-life care can leave doctors unsure of what a patient truly wants. Failing to receive end-of-life care in line with their values and wishes can cause patients and their families great distress. Researchers have developed innovative, evidence-based programs to help doctors and patients improve their communication skills and grow comfortable with these discussions.

  1. Oncologists' strategies and barriers to effective communication about the end of life.

    Granek, Leeat; Krzyzanowska, Monika K; Tozer, Richard; Mazzotta, Paolo

    2013-07-01

    Communicating about the end of life with patients has been reported as one of the most difficult and stressful part of the work of oncologists. Despite this fact, oncologists receive little training in this area, and many do not communicate effectively with patients. The purpose of this analysis, part of a larger study examining oncologists' experiences of patient loss, was to explore oncologists' communication strategies and communication barriers when discussing end-of-life issues with patients. Twenty oncologists were interviewed at three hospitals about their communication strategies on end-of-life issues with patients. The data were analyzed using the grounded theory method. The findings revealed the strategies to effective communication about the end of life included: being open and honest; having ongoing, early conversations; communicating about modifying treatment goals; and balancing hope and reality. Barriers to implementing these strategies fell broadly into three domains, including physician factors, patient factors, and institutional factors. Physician factors included difficulty with treatment and palliation, personal discomfort with death and dying, diffusion of responsibility among colleagues, using the "death-defying mode," lack of experience, and lack of mentorship. Patient factors included, patients and/or families being reluctant to talk about the end of life, language barriers, and younger age. Institutional factors included stigma around palliative care, lack of protocol about end-of-life issues; and lack of training for oncologists on how to talk with patients about end-of-life issues. We conclude by drawing implications from our study and suggest that further research and intervention are necessary to aid oncologists in achieving effective communication about end-of-life issues.

  2. [Organising and supporting the end of life when faced with a refusal of care].

    Rautureau, Pascal

    2018-04-01

    Often ethically complex, end-of-life situations can mean nursing teams are confronted with a refusal of care. Through a representative clinical situation, a nurse describes the support provided by a multidisciplinary team, in the home, to comply with the wishes of a person at the end of life, support the family, anticipate possible difficulties and organise adapted care which respects all those concerned. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

  3. Doctor's dilemma: Medical decision making

    Ganatra, R.D.

    1992-01-01

    How a doctor arrives at a decision is of interest to both the developed and the developing countries. The developed and the developing want to walk on the same road but from different directions: one wants to develop a little more and the other wants to develop a little less for cost containment. To justify nuclear medicine in a developing country we have to see nuclear medicine in a new role. It is not for putting the diagnostic labels, not for differential diagnosis as we have been conditioned to think so far. In a developing country it should be for differential management, How does it alter the management decision in respect to a particular patient? If management outcomes are restricted, there is no need for an investigation which does not help in any way the management of the patient. If there is no bypass surgery, what use is the thallium perfusion? Although primarily a diagnostic discipline for its justification and survival in the developing country it should lead to a sensible differential management

  4. A Qualitative Examination of Physician Gender and Parental Status in Pediatric End-of-Life Communication.

    Bateman, Lori Brand; White, Marjorie Lee; Tofil, Nancy M; Clair, Jeffrey Michael; Needham, Belinda L

    2017-07-01

    In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL). The findings presented here emerged from a larger qualitative study that explored physician narratives surrounding pediatric EOL communication. The current study includes 17 pediatric critical care and pediatric emergency medicine physician participants who completed narrative interviews between March and October 2012 to discuss how their backgrounds influenced their approaches to pediatric EOL communication. Between April and June of 2013, participants completed a second round of narrative interviews to discuss topics generated out of the first round of interviews. We used grounded theory to inform the design and analysis of the study. Findings indicated that physician gender is related to pediatric EOL communication and care in two primary ways: (1) the level of physician emotional distress and (2) the way physicians perceive the influence of gender on communication. Additionally, parental status emerged as an important theme as it related to EOL decision-making and communication, emotional distress, and empathy. Although physicians reported experiencing more emotional distress related to interacting with patients at the EOL after they became parents, they also felt that they were better able to show empathy to parents of their patients.

  5. The end-of-life phase of high-grade glioma patients: dying with dignity?

    Sizoo, Eefje M; Taphoorn, Martin J B; Uitdehaag, Bernard; Heimans, Jan J; Deliens, Luc; Reijneveld, Jaap C; Pasman, H Roeline W

    2013-01-01

    In the end-of-life (EOL) phase, high-grade glioma (HGG) patients have a high symptom burden and often lose independence because of physical and cognitive dysfunction. This might affect the patient's personal dignity. We aimed to (a) assess the proportion of HGG patients dying with dignity as perceived by their relatives and (b) identify disease and care factors correlated with dying with dignity in HGG patients. We approached relatives of a cohort of 155 deceased HGG patients for the study. Participants completed a questionnaire concerning the EOL phase of the patient, covering several subthemes: (a) symptoms and signs, (b) health-related quality of life, (c) decision making, (d) place and quality of EOL care, and (e) dying with dignity. Relatives of 81 patients participated and 75% indicated that the patient died with dignity. These patients had fewer communication deficits, experienced fewer transitions between health care settings in the EOL phase, and more frequently died at their preferred place of death. Relatives were more satisfied with the physician providing EOL care and reported that the physician adequately explained treatment options. Multivariate analysis identified satisfaction with the physician, the ability to communicate, and the absence of transitions between settings as most predictive of a dignified death. Physicians caring for HGG patients in the EOL phase should timely focus on explaining possible treatment options, because patients experience communication deficits toward death. Physicians should strive to allow patients to die at their preferred place and avoid transitions during the last month of life.

  6. TU-D-201-00: Use of End-Of-Life Brachytherapy Devices

    2015-01-01

    Brachytherapy devices and software are designed to last for a certain period of time. Due to a number of considerations, such as material factors, wear-and-tear, backwards compatibility, and others, they all reach a date when they are no longer supported by the manufacturer. Most of these products have a limited duration for their use, and the information is provided to the user at time of purchase. Because of issues or concerns determined by the manufacturer, certain products are retired sooner than the anticipated date, and the user is immediately notified. In these situations, the institution is facing some difficult choices: remove these products from the clinic or perform tests and continue their usage. Both of these choices come with a financial burden: replacing the product or assuming a potential medicolegal liability. This session will provide attendees with the knowledge and tools to make better decisions when facing these issues. Learning Objectives: Understand the meaning of “end-of-life or “life expectancy” for brachytherapy devices and software Review items (devices and software) affected by “end-of-life” restrictions Learn how to effectively formulate “end-of-life” policies at your institution Learn about possible implications of “end-of-life” policy Review other possible approaches to “end-of-life” issue

  7. TU-D-201-03: Proposed Solutions to End-Of-Life Issue

    Ouhib, Z.

    2015-01-01

    Brachytherapy devices and software are designed to last for a certain period of time. Due to a number of considerations, such as material factors, wear-and-tear, backwards compatibility, and others, they all reach a date when they are no longer supported by the manufacturer. Most of these products have a limited duration for their use, and the information is provided to the user at time of purchase. Because of issues or concerns determined by the manufacturer, certain products are retired sooner than the anticipated date, and the user is immediately notified. In these situations, the institution is facing some difficult choices: remove these products from the clinic or perform tests and continue their usage. Both of these choices come with a financial burden: replacing the product or assuming a potential medicolegal liability. This session will provide attendees with the knowledge and tools to make better decisions when facing these issues. Learning Objectives: Understand the meaning of “end-of-life or “life expectancy” for brachytherapy devices and software Review items (devices and software) affected by “end-of-life” restrictions Learn how to effectively formulate “end-of-life” policies at your institution Learn about possible implications of “end-of-life” policy Review other possible approaches to “end-of-life” issue

  8. Value estimation of end of life vehicles as a source of competitive advantage for dismantling station

    Monika Kosacka

    2016-03-01

    Full Text Available   Background: End of Life vehicles become an emerging problem because of the type of waste which they are. Each country is creating own recycling network where ELVs are well secured and recycled. Poland is a country where the system is not working correct because of a high absorption of ELVs by illegal dismantling entities which are more competitive than legal elements of recycling network. The problem is well known but there is still lack of solution. The purpose of this article is to present the concept of tools for the valuation of ELVs in order to improve the competitiveness of disassembly stations. Methods: The research methodology consists of a literature review as well as observations, surveys, BPMN and UML diagrams. On the basis of literature review and observations the problem was identified. The surveys were elaborated in order to identify requirements for the concept of the tool. BPMN and UML diagrams were used to model the processes in dismantling station and the information flow between the user and the tool. Results: There was established a concept of the tool - ELV's Calculator which support decisions of ELV's value estimation. Conclusions: Improving competitiveness of legal dismantling station is extremely important issue in order to provide safe for Environment and People and economically justified ELVs' management. Legal entities have to follow the law what makes their business cost higher. This paper provides a solution of encouraging people to return ELVs to legal dismantlers by offering them price adequate to market demand.    

  9. The impact of culture and religion on truth telling at the end of life.

    de Pentheny O'Kelly, Clarissa; Urch, Catherine; Brown, Edwina A

    2011-12-01

    Truth telling, a cardinal rule in Western medicine, is not a globally shared moral stance. Honest disclosure of terminal prognosis and diagnosis are regarded as imperative in preparing for the end of life. Yet in many cultures, truth concealment is common practice. In collectivist Asian and Muslim cultures, illness is a shared family affair. Consequently, decision making is family centred and beneficence and non-malfeasance play a dominant role in their ethical model, in contrast to patient autonomy in Western cultures. The 'four principles' are prevalent throughout Eastern and Western cultures, however, the weight with which they are considered and their understanding differ. The belief that a grave diagnosis or prognosis will extinguish hope in patients leads families to protect ill members from the truth. This denial of the truth, however, is linked with not losing faith in a cure. Thus, aggressive futile treatment can be expected. The challenge is to provide a health care service that is equable for all individuals in a given country. The British National Health Service provides care to all cultures but is bound by the legal principles and framework of the UK and aims for equity of provision by working within the UK ethical framework with legal and ethical norms being explained to all patients and relatives. This requires truth telling about prognosis and efficacy of potential treatments so that unrealistic expectations are not raised.

  10. Euthanasia embedded in palliative care. Responses to essentialistic criticisms of the Belgian model of integral end-of-life care.

    Bernheim, Jan L; Raus, Kasper

    2017-08-01

    The Belgian model of 'integral' end-of-life care consists of universal access to palliative care (PC) and legally regulated euthanasia. As a first worldwide, the Flemish PC organisation has embedded euthanasia in its practice. However, some critics have declared the Belgian-model concepts of 'integral PC' and 'palliative futility' to fundamentally contradict the essence of PC. This article analyses the various essentialistic arguments for the incompatibility of euthanasia and PC. The empirical evidence from the euthanasia-permissive Benelux countries shows that since legalisation, carefulness (of decision making) at the end of life has improved and there have been no significant adverse 'slippery slope' effects. It is problematic that some critics disregard the empirical evidence as epistemologically irrelevant in a normative ethical debate. Next, rejecting euthanasia because its prevention was a founding principle of PC ignores historical developments. Further, critics' ethical positions depart from the PC tenet of patient centeredness by prioritising caregivers' values over patients' values. Also, many critics' canonical adherence to the WHO definition of PC, which has intention as the ethical criterion is objectionable. A rejection of the Belgian model on doctrinal grounds also has nefarious practical consequences such as the marginalisation of PC in euthanasia-permissive countries, the continuation of clandestine practices and problematic palliative sedation until death. In conclusion, major flaws of essentialistic arguments against the Belgian model include the disregard of empirical evidence, appeals to canonical and questionable definitions, prioritisation of caregiver perspectives over those of patients and rejection of a plurality of respectable views on decision making at the end of life. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  11. Establishing end-of-life boards for palliative care of patients with advanced diseases.

    Masel, Eva K; Unseld, Matthias; Adamidis, Feroniki; Roider-Schur, Sophie; Watzke, Herbert H

    2018-04-01

    Interdisciplinary tumor board decisions improve the quality of oncological therapies, while no such boards exist for end-of-life (EOL) decisions. The aim of this study was to assess the willingness of hemato-oncological and palliative care professionals to develop and participate in EOL boards. An aim of an EOL board would be to establish an interdisciplinary and comprehensive care for the remaining lifetime of patients suffering from advanced incurable diseases. Staff from the interdisciplinary teams of all hemato-oncological and palliative care wards in Vienna were invited to anonymously participate in an online survey. 309 professionals responded. 91% respondents reported a need to establish an EOL board, 63% expressed their willingness to actively participate in an EOL board, and 25% were indecisive. Regarding patient presence, 50% voted for an EOL board in the presence of the patients, and 36% voted for an EOL board in the absence of the patients. 95% had the opinion that an EOL board could improve patient care in the last phase of life. 64% stated that the development of an EOL board would be worthwhile, while 28% did not see enough resources available at their institutions. Regarding the desired type of documentation, 61% voted for a centrally available EOL decision, and 31% supported an in-house-based documentation. 94% voted for the availability of an information folder about EOL care. The willingness of professionals to establish an EOL board was very high. Further steps should be taken to implement such boards to improve EOL care.

  12. Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care.

    Dunning, Trisha; Duggan, Nicole; Savage, Sally; Martin, Peter

    2013-03-01

    Providing palliative care for people with diabetes at the end of life is part of the chronic disease care trajectory, but end of life care is complex and the presence of diabetes further complicates management. The aim of the paper is to discuss the ethical and methodological issues encountered when undertaking research to develop guidelines for managing diabetes at the end of life and the strategies used to address the issues. The issues emerged as we developed guidelines for managing diabetes at the end of life, which included conducting individual interviews with 14 people with diabetes requiring palliative care and 10 family members. A reflexive researcher journal was maintained throughout the guideline development process. The interview transcripts and researcher's journal were analysed to determine key methodological, ethical and researcher-related issues. Key themes were vulnerability of the sampling population, methodological issues included recruiting participants and ensuring rigor, ethical issues concerned benefit and risk, justice, autonomy, privacy, professional boundaries and informed consent. Researcher-related issues were identified such as managing participant distress and their own emotional distress. People were willing to discuss end of life diabetes management preferences. Undertaking research with people at the end of life is complex because of their vulnerability and the ethical issues involved. However, the ethical principles of autonomy and justice apply and people should be given the relevant information and opportunity to decide whether to participate or not. © 2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

  13. Euthanasia, assisted suicide and end-of-life care: attitudes of students, residents and attending physicians.

    Ramírez-Rivera, José; Cruz, Juan; Jaume-Anselmi, Francisco

    2006-12-01

    Attitudes in regard to end-of life issues are evolving in Western societies. We have sought to trace this evolution in the relatively homogeneous cultural setting of Puerto Rico. One hundred fifty-two medical students, 62 medical residents and 84 members of three medical faculties were asked whether in terminally ill patients they: 1) would support a request for euthanasia(E); 2) if legalized, would engage in, would oppose or would not be opposed to others engaging physician-assisted suicide(PAS); 3) would consider ethical to prescribe full doses of drugs needed to alleviate pain, even if they knew it would hasten death; 4) would agree to limit certain resources for the terminally ill. Gender and religious affiliation were also requested. Twenty-eight percent of the students, 26% of the residents and 31% of the faculty supported E. Only 13% of the students, 18% of the residents and 11% of the faculty would engage in PAS. Men were more willing than women to acquiesce to a request for E or PAS. Religious affiliation or its absence did not influence the support or opposition to E and PAS. If it would hasten death, 86% of the residents, but only 65% of the faculty considered ethical to prescribe the dose of drugs needed to alleviate pain. More than 2/3 of the students, residents and faculty favored the limiting of certain resources for the terminally ill. In our cultural and medical environment, men are more willing than women to engage in E or PAS. The attitude towards E and PAS is not influenced by religious affiliation. If it hastens death, some still consider unethical to prescribe full doses of drugs needed to alleviate pain in the dying patient.

  14. Doctor's dilemma (medical decision making)

    Ganatra, R.D.

    2003-01-01

    Disagreement between experts is presumed to be uncommon in medical diagnosis. Radiology is considered to be a particularly objective means of diagnosis and expert radiographic interpretation is expected to be infallible. Five military radiologists were made to review independently chest radiographs of 1256 patients recorded in four image formats and interpret each as positive or negative for tuberculosis. The results were unexpected. Ability to detect tuberculosis varied little between various image formats but the extent of disagreement between doctors was remarkable. The number of cases judged positive varied from 56 to 100 among the five readers. Of cases judged positive at least once, the mean rate of disagreement between pairs of readers was 19%. The validity of these findings have been confirmed repeatedly in several subsequent trials. Other diagnostic modalities show equally surprising rates of diagnostic dissonance. Extensive observer disagreement was found to be a universal problem in medical diagnosis, giving credence to the proverbial adage that 'no two doctors agree'. The magnitude of disagreement between experts is the principal theoretic problem of diagnosis. Even a stochastic theory of diagnosis is devised which accounts for the disagreement between experts, where the disagreement approaches a theoretic maximum even for ideal diagnosticians

  15. Promoting excellence in end-of-life care: a report on innovative models of palliative care.

    Byock, Ira; Twohig, Jeanne Sheils; Merriman, Melanie; Collins, Karyn

    2006-02-01

    Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life. To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care. The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care. The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients. Hosting or adopting institutions sustained or expanded twenty of the 22 models

  16. From vulnerability to passion in the end-of-life care: The lived experience of nurses.

    Liu, Ying-Chun; Chiang, Hsien-Hsien

    2017-12-01

    End-of-life (EOL) care is considered to be inherently difficult and vulnerable for patients and nurses. It also seems hard to develop passion for care during these problematic times. This study elucidates how EOL nurses interpret their care experience and how they transform their experience and mindset. This study was conducted by organizing a reflective group based on the concept of group analysis for oncology and hospice nurses to share their experience. Thirteen registered nurses were enrolled from a medical center in northern Taiwan. Data drawn from the group dialogue was derived from six digitally recorded sessions and then analysed alone with the researcher's diaries and participants' feedback sheets. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. The results showed that nurses who provide EOL care actually experience suffering by witnessing patients' suffering. However, the suffering authentically drives the nurses to encounter their own inner selves, to induce the shift of mindset, and then allow them to continuously provide and maintain the passion in EOL care. This study provides a new viewpoint for understanding of EOL nurses' experiences, indicating that this line of work may be recognized as a privilege. We recommend that the setting of a nurse reflective group is important and it may be considered in providing EOL care training for nurses. Hopefully the study results could shed lights for future policies regarding EOL care. Copyright © 2017 Elsevier Ltd. All rights reserved.

  17. Euthanasia and end-of-life practices in France and Germany. A comparative study.

    Horn, Ruth

    2013-05-01

    The objective of this paper is to understand from a sociological perspective how the moral question of euthanasia, framed as the "right to die", emerges and is dealt with in society. It takes France and Germany as case studies, two countries in which euthanasia is prohibited and which have similar legislation on the issue. I presuppose that, and explore how, each society has its own specificities in terms of practical, social and political norms that affect the ways in which they deal with these issues. The paper thus seeks to understand how requests for the "right to die" emerge in each society, through both the debate (analysis of daily newspapers, medical and philosophical literature, legal texts) and the practices (ethnographic work in three French and two German hospitals) that elucidate the phenomenon. It does so, however, without attempting to solve the moral question of euthanasia. In spite of the differences observed between these two countries, the central issue at stake in their respective debates is the question of the individual's autonomy to choose the conditions in which he or she wishes to die; these conditions depend, amongst others, on the doctor-patient relationship, the organisation of end-of-life care in hospital settings, and more generally, on the way autonomy is defined and handled in the public debate.

  18. General Practitioners’ Decisions about Discontinuation of Medication

    Nixon, Michael Simon; Vendelø, Morten Thanning

    2016-01-01

    insights about decision making when discontinuing medication. It also offers one of the first examinations of how the institutional context embedding GPs influences their decisions about discontinuation. For policymakers interested in the discontinuation of medication, the findings suggest that de......Purpose – The purpose of this paper is to investigate how general practitioners’ (GPs) decisions about discontinuation of medication are influenced by their institutional context. Design/methodology/approach – In total, 24 GPs were interviewed, three practices were observed and documents were...... a weak frame for discontinuation. Three reasons for this are identified: the guidelines provide dominating triggers for prescribing, they provide weak priming for discontinuation as an option, and they underscore a cognitive constraint against discontinuation. Originality/value – The analysis offers new...

  19. Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor.

    Hendricks-Ferguson, Verna L; Pradhan, Kamnesh; Shih, Chie-Schin; Gauvain, Karen M; Kane, Javier R; Liu, Jingxia; Haase, Joan E

    Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent responses related to a PC/EOL communication intervention, titled "Communication Plan: Early through End of Life (COMPLETE)" to parents of children with a brain tumor. The study was a 2-site prospective, single-group pilot study targeting parents' stress and coping outcomes. The sample included 13 parents of 11 children (ie, 11 families). During the first 6 months postdiagnosis, we evaluated parent outcomes at 4 time points (baseline and 3 post-sessions). Our findings included significant decline in decision regret ( P = .0089); strong, significantly increased hope ( P ≤ .0001); and significantly decreased uncertainty ( P = .04). Over time, more than half of the parents (61.5%) preferred to receive information about their child's current condition and PC/EOL options. Our findings provide evidence to suggest that the COMPLETE intervention is feasible and acceptable and produces promising effects on 3 parent outcomes (ie, decision regret, hope, and uncertainty) in parents of children with a brain tumor. Further research is indicated to evaluate COMPLETE with a larger sample of parents of children with cancer and with a control group.

  20. Race, Income, and Education: Associations with Patient and Family Ratings of End-of-Life Care and Communication Provided by Physicians-in-Training

    Engelberg, Ruth A.; Downey, Lois; Kross, Erin K.; Reinke, Lynn F.; Cecere Feemster, Laura; Dotolo, Danae; Ford, Dee W.; Back, Anthony L.; Curtis, J. Randall

    2014-01-01

    Abstract Background: Minority race and lower socioeconomic status are associated with poorer patient ratings of health care quality and provider communication. Objective: To examine the association of race/ethnicity or socioeconomic status with patients' and families' ratings of end-of-life care and communication about end-of-life care provided by physicians-in-training. Methods: As a component of a randomized trial evaluating a program designed to improve clinician communication about end-of-life care, patients and patients' families completed preintervention survey data regarding care and communication provided by internal medicine residents and medical subspecialty fellows. We examined associations between patient and family race or socioeconomic status and ratings they gave trainees on two questionnaires: the Quality of End-of-Life Care (QEOLC) and Quality of Communication (QOC). Results: Patients from racial/ethnic minority groups, patients with lower income, and patients with lower educational attainment gave trainees higher ratings on the end-of-life care subscale of the QOC (QOCeol). In path models, patient educational attainment and income had a direct effect on outcomes, while race/ethnicity did not. Lower family educational attainment was also associated with higher trainee ratings on the QOCeol, while family non-white race was associated with lower trainee ratings on the QEOLC and general subscale of the QOC. Conclusions: Patient race is associated with perceptions of the quality of communication about end-of-life care provided by physicians-in-training, but the association was opposite to our hypothesis and appears to be mediated by socioeconomic status. Family member predictors of these perceptions differ from those observed for patients. Further investigation of these associations may guide interventions to improve care delivered to patients and families. PMID:24592958

  1. Race, income, and education: associations with patient and family ratings of end-of-life care and communication provided by physicians-in-training.

    Long, Ann C; Engelberg, Ruth A; Downey, Lois; Kross, Erin K; Reinke, Lynn F; Cecere Feemster, Laura; Dotolo, Danae; Ford, Dee W; Back, Anthony L; Curtis, J Randall

    2014-04-01

    Minority race and lower socioeconomic status are associated with poorer patient ratings of health care quality and provider communication. To examine the association of race/ethnicity or socioeconomic status with patients' and families' ratings of end-of-life care and communication about end-of-life care provided by physicians-in-training. As a component of a randomized trial evaluating a program designed to improve clinician communication about end-of-life care, patients and patients' families completed preintervention survey data regarding care and communication provided by internal medicine residents and medical subspecialty fellows. We examined associations between patient and family race or socioeconomic status and ratings they gave trainees on two questionnaires: the Quality of End-of-Life Care (QEOLC) and Quality of Communication (QOC). Patients from racial/ethnic minority groups, patients with lower income, and patients with lower educational attainment gave trainees higher ratings on the end-of-life care subscale of the QOC (QOCeol). In path models, patient educational attainment and income had a direct effect on outcomes, while race/ethnicity did not. Lower family educational attainment was also associated with higher trainee ratings on the QOCeol, while family non-white race was associated with lower trainee ratings on the QEOLC and general subscale of the QOC. Patient race is associated with perceptions of the quality of communication about end-of-life care provided by physicians-in-training, but the association was opposite to our hypothesis and appears to be mediated by socioeconomic status. Family member predictors of these perceptions differ from those observed for patients. Further investigation of these associations may guide interventions to improve care delivered to patients and families.

  2. [Kairos. Decision-making in medical ethics].

    Jousset, David

    2014-06-01

    This paper assesses the decision making patterns in medical ethics: the formalized pattern of decision science, the meditative pattern of an art of judgement and lastly the still-to-be-elaborated pattern of kairology or sense of the right time. The ethical decision is to be thought out in the conditions of medical action while resorting to the philosophical concepts that shed light on the issue. And it is precisely where medicine and philosophy of human action meet that the Greek notion of kairos, or "propitious moment", evokes the critical point where decision has to do with what is vital. Reflection shows that this kairos can be thought out outside the sacrificial pattern (deciding comes down to killing a possibility) by understanding the opportune moment as a sign of ethical action, as the condition for the formation of the subject (making a decision) and finally as a new relationship to time, including in the context of medical urgency. Thus with an approach to clinical ethics centred on the relation to the individual, the focus is less on the probabilistic knowledge of the decidable than on the meaning of the decision, and the undecidable comes to be accepted as an infinite dimension going beyond the limits of our acts, which makes the contingency and the grandeur of human responsibility.

  3. Non-medical influences on medical decision-making.

    McKinlay, J B; Potter, D A; Feldman, H A

    1996-03-01

    The influence of non-medical factors on physicians' decision-making has been documented in many observational studies, but rarely in an experimental setting capable of demonstrating cause and effect. We conducted a controlled factorial experiment to assess the influence of non-medical factors on the diagnostic and treatment decisions made by practitioners of internal medicine in two common medical situations. One hundred and ninety-two white male internists individually viewed professionally produced video scenarios in which the actor-patient, presenting with either chest pain or dyspnea, possessed various balanced combinations of sex, race, age, socioeconomic status, and health insurance coverage. Physician subjects were randomly drawn from lists of internists in private practice, hospital-based practice, and HMO's, at two levels of experience. The most frequent diagnoses for both chest pain and dyspnea were psychogenic origin and cardiac problems. Smoking cessation was the most frequent treatment recommendation for both conditions. Younger patients (all other factors being the same) were significantly more likely to receive the psychogenic diagnosis. Older patients were more likely to receive the cardiac diagnosis for chest pain, particularly if they were insured. HMO-based physicians were more likely to recommend a follow-up visit for chest pain. Several interactions of patient and physician factors were significant in addition to the main effects. The variability in decision-making evidenced by physicians in this experiment was not entirely accounted for by strictly rational Bayesian inference (the common prescriptive model for medical decision-making), in-as-much as non-medical factors significantly affected the decisions that they made. There is a need to supplement idealized medical schemata with considerations of social behavior in any comprehensive theory of medical decision-making.

  4. Scientific, legal, and ethical challenges of end-of-life organ procurement in emergency medicine.

    Rady, Mohamed Y; Verheijde, Joseph L; McGregor, Joan L

    2010-09-01

    We review (1) scientific evidence questioning the validity of declaring death and procuring organs in heart-beating (i.e., neurological standard of death) and non-heart-beating (i.e., circulatory-respiratory standard of death) donation; (2) consequences of collaborative programs realigning hospital policies to maximize access of procurement coordinators to critically and terminally ill patients as potential donors on arrival in emergency departments; and (3) ethical and legal ramifications of current practices of organ procurement on patients and their families. Relevant publications in peer-reviewed journals and government websites. Scientific evidence undermines the biological criteria of death that underpin the definition of death in heart-beating (i.e., neurological standard) and non-heart-beating (i.e., circulatory-respiratory standard) donation. Philosophical reinterpretation of the neurological and circulatory-respiratory standards in the death statute, to avoid the appearance of organ procurement as an active life-ending intervention, lacks public and medical consensus. Collaborative programs bundle procurement coordinators together with hospital staff for a team-huddle and implement a quality improvement tool for a Rapid Assessment of Hospital Procurement Barriers in Donation. Procurement coordinators have access to critically ill patients during the course of medical treatment with no donation consent and with family or surrogates unaware of their roles. How these programs affect the medical care of these patients has not been studied. Policies enforcing end-of-life organ procurement can have unintended consequences: (1) erosion of care in the patient's best interests, (2) lack of transparency, and (3) ethical and legal ramifications of flawed standards of declaring death. Copyright 2010 Elsevier Ireland Ltd. All rights reserved.

  5. 76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    2011-06-16

    ... Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire... Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source... Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source...

  6. 76 FR 59145 - Submission for OMB Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    2011-09-23

    ...; Comment Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of... End-of-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of Authors). Type of Information Collection Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science...

  7. Perspectives of family members on planning end-of-life care for terminally ill and frail older people.

    van Eechoud, Ineke J; Piers, Ruth D; Van Camp, Sigrid; Grypdonck, Mieke; Van Den Noortgate, Nele J; Deveugele, Myriam; Verbeke, Natacha C; Verhaeghe, Sofie

    2014-05-01

    Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  8. Care of cancer patients at the end of life in a German university hospital: A retrospective observational study from 2014.

    Burkhard Dasch

    Full Text Available Cancer care including aggressive treatment procedures during the last phase of life in patients with incurable cancer has increasingly come under scrutiny, while integrating specialist palliative care at an early stage is regarded as indication for high quality end-of-life patient care.To describe the demographic and clinical characteristics and the medical care provided at the end of life of cancer patients who died in a German university hospital.Retrospective cross-sectional study on the basis of anonymized hospital data for cancer patients who died in the Munich University Hospital in 2014. Descriptive analysis and multivariate logistic regression analyses for factors influencing the administration of aggressive treatment procedures at the end of life.Overall, 532 cancer patients died. Mean age was 66.8 years, 58.5% were men. 110/532 (20.7% decedents had hematologic malignancies and 422/532 (79.3% a solid tumor. Patients underwent the following medical interventions in the last 7/30 days: chemotherapy (7.7%/38.3%, radiotherapy (2.6%/6.4%, resuscitation (8.5%/10.5%, surgery (15.2%/31.0%, renal replacement therapy (12.0%/16.9%, blood transfusions (21.2%/39.5%, CT scan (33.8%/60.9%. In comparison to patients with solid tumors, patients with hematologic malignancies were more likely to die in intensive care (25.4% vs. 49.1%; p = 0.001, and were also more likely to receive blood transfusions (OR 2.21; 95% CI, 1.36 to 3.58; p = 0.001 and renal replacement therapy (OR 2.65; 95% CI, 1.49 to 4.70; p = 0.001 in the last 7 days of life. Contact with the hospital palliative care team had been initiated in 161/532 patients (30.3%. In 87/161 cases (54.0%, the contact was initiated within the last week of the patient's life.Overambitious treatments are still reality at the end of life in cancer patients in hospital but patients with solid tumors and hematologic malignancies have to be differentiated. More efforts are necessary for the timely inclusion of

  9. Sustainable Logistics of End-of-life Vehicles – Trends in Europe

    Agata Mesjasz-Lech

    2017-06-01

    Full Text Available Purpose of the article: In the article we have focused on the trends determining the development of reverse logistics of end-of-life vehicles in selected European countries. The analysis concentrates on quantity of end-of-life vehicles which are especially interesting for reverse logistics because of their fitness for recovery or reuse. End-of-life products contain fully valuable elements which, according to the idea of sustainable use of resources, should be recovered. Accordingly, reverse logistics aims at protecting natural resources and the environment through reintroduction of processed waste materials into the economic cycle as valuable products and materials. Methodology/methods: The aim of the article was achieved on the basis of a critical analysis of subject literature and the analysis of statistical data. In the article the method of descriptive and mathematical statistics and dynamic analysis were used. The 2006–2014 years were analyzed. The data come from the data base of the Eurostat, the statistical office of the European Union. The following variables were taken into account: the amount of end-of-life vehicles (in tonnes and in number of cars, reuse level (in tonnes, recovery level (in tonnes, and recycling level (in tonnes. The analysis was based on a t-Student test for two average values of dependent samples, sign test and the Wilcoxon signed rank test. In order to see if the reverse logistics actions implemented in European countries were effective, the analysis compares the average values of individual variables from the year 2014 and 2006. Measurements were done for the same countries on the same element of population. The chain indexes and the average change tempo for specified variables were calculated. The similarity of the formation of specified variables in each year was compared on the basis of the index of similarity structures. Scientific aim: The scientific aim of the article is to identify the basic trends

  10. Physician Communication in Pediatric End-of-Life Care: A Simulation Study.

    Bateman, Lori Brand; Tofil, Nancy M; White, Marjorie Lee; Dure, Leon S; Clair, Jeffrey Michael; Needham, Belinda L

    2016-12-01

    The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life. Thirteen pediatric emergency medicine and pediatric critical care fellows and attendings participated in a high-fidelity simulation to assess physician communication with an actor-parent. Fifteen percent of the participants decided not to initiate life-sustaining technology (intubation), and 23% of participants offered alternatives to life-sustaining care, such as comfort measures. Although 92% of the participants initiated an end-of-life conversation, the quality of that discussion varied widely. Findings indicate that effective physician-parent communication may not consistently occur in cases involving the treatment of pediatric patients at the end of life in emergency and critical care units. The findings in this study, particularly that physician-parent end-of-life communication is often unclear and that alternatives to life-sustaining technology are often not offered, suggest that physicians need more training in both communication and end-of-life care. © The Author(s) 2015.

  11. Assessment and Treatment Considerations for Post Traumatic Stress Disorder at End of Life.

    Glick, Debra M; Cook, Joan M; Moye, Jennifer; Kaiser, Anica Pless

    2018-01-01

    Post traumatic stress disorder (PTSD) may first emerge, reemerge, or worsen as individuals approach end of life and may complicate the dying process. Unfortunately, lack of awareness of the occurrence and/or manifestation of PTSD at end of life can lead to PTSD going unaddressed. Even if PTSD is properly diagnosed, traditional evidence-based trauma-focused treatments may not be feasible or advisable with this group as many patients at end of life often lack the physical and mental stamina to participate in traditional psychotherapy. This article reviews the clinical and empirical literature on PTSD at end of life, as well as discusses assessment and psychotherapy treatment issues with this neglected population. In addition, it expands on the current reviews of this literature 1-3 by extrapolating results from nontraditional treatment approaches with other patient populations. Elements of these approaches with patients sharing similar characteristics and/or comorbidities with patients with PTSD at end of life may provide additional benefits for the latter population. Clinical implications and suggestions for interdisciplinary care providers are provided.

  12. Inuit interpreters engaged in end-of-life care in Nunavik, Northern Quebec.

    Hordyk, Shawn Renee; Macdonald, Mary Ellen; Brassard, Paul

    2017-01-01

    Inuit interpreters are key players in end-of-life (EOL) care for Nunavik patients and families. This emotionally intensive work requires expertise in French, English and Inuit dialects to negotiate linguistic and cultural challenges. Cultural differences among medical institutions and Inuit communities can lead to value conflicts and moral dilemmas as interpreters navigate how best to transmit messages of care at EOL. Our goal was to understand the experience of Inuit interpreters in the context of EOL care in Nunavik in order to identify training needs. In the context of a larger ethnographic project on EOL care in Nunavik, we met with 24 current and former interpreters from local health centres and Montreal tertiary care contexts. Data included informal and formal interviews focusing on linguistic resources, experiences concerning EOL care, and suggestions for the development of interpretation training. Inuit working as interpreters in Nunavik are hired to provide multiple services of which interpretation plays only a part. Many have no formal training and have few resources (e.g. visual aids, dictionaries) to draw upon during medical consultations. Given the small size of communities, many interpreters personally know their clients and often feel overwhelmed by moral dilemmas when translating EOL information for patients and families. The concept of moral distress is a helpful lens to make sense of their experience, including personal and professional repercussions. Inuit interpreters in Nunavik are working with little training yet in context with multiple linguistic and cultural challenges. Linguistic and cultural resources and focused training on moral dilemmas unique to circumpolar contexts could contribute to improved work conditions and ultimately to patient care.​​​​.

  13. Cultural and ethical considerations for cardiopulmonary resuscitation in chinese patients with cancer at the end of life.

    Zhang, Zhe; Chen, Meng-Lei; Gu, Xiao-Li; Liu, Ming-Hui; Cheng, Wen-Wu

    2015-03-01

    End-of-life (EOL) decision making is based on the values and wishes of terminally ill patients. However, little is known on the extent to which cultural factors affect personal attitudes toward life-sustaining treatments (LSTs) such as cardiopulmonary resuscitation (CPR) in China. This study evaluated the cultural and ethical considerations during EOL decisions and assessed the factors that affect pursuing LSTs in China. We used a case-control study design and compared their baseline characteristics with the provided EOL care and treatments. The CPR treatment among patients with cancer at EOL was affected by Chinese family traditions and Western influences. Our results reflect the need to improve EOL care and treatment in China. © The Author(s) 2014.

  14. Minors' rights in medical decision making.

    Hickey, Kathryn

    2007-01-01

    In the past, minors were not considered legally capable of making medical decisions and were viewed as incompetent because of their age. The authority to consent or refuse treatment for a minor remained with a parent or guardian. This parental authority was derived from the constitutional right to privacy regarding family matters, common law rule, and a general presumption that parents or guardians will act in the best interest of their incompetent child. However, over the years, the courts have gradually recognized that children younger than 18 years who show maturity and competence deserve a voice in determining their course of medical treatment. This article will explore the rights and interests of minors, parents, and the state in medical decision making and will address implications for nursing administrators and leaders.

  15. Condition Assessment and End-of-Life Prediction System for Electric Machines and Their Loads

    Parlos, Alexander G.; Toliyat, Hamid A.

    2005-01-01

    An end-of-life prediction system developed for electric machines and their loads could be used in integrated vehicle health monitoring at NASA and in other government agencies. This system will provide on-line, real-time condition assessment and end-of-life prediction of electric machines (e.g., motors, generators) and/or their loads of mechanically coupled machinery (e.g., pumps, fans, compressors, turbines, conveyor belts, magnetic levitation trains, and others). In long-duration space flight, the ability to predict the lifetime of machinery could spell the difference between mission success or failure. Therefore, the system described here may be of inestimable value to the U.S. space program. The system will provide continuous monitoring for on-line condition assessment and end-of-life prediction as opposed to the current off-line diagnoses.

  16. Community gardens as sites of solace and end-of-life support: a literature review.

    Marsh, Pauline; Spinaze, Anna

    2016-05-01

    In a pilot project, members of a community garden explored how they might provide better end-of-life support for their regional community. As part of the project, a literature review was undertaken to investigate the nexus between community gardens and end-of-life experiences (including grief and bereavement) in academic research. This article documents the findings of that review. The authors discovered there is little academic material that focuses specifically on community gardens and end-of-life experiences, but nonetheless the two subjects were seen to intersect. The authors found three points of commonality: both share a need and capacity for a) social/informal support, b) therapeutic space, and c) opportunities for solace.

  17. Spirituality in end-of-life care: attending the person on their journey.

    Hayden, Deborah

    2011-11-01

    Spirituality is a fundamental element to the human experience of health and healing, illness and dying. Spiritual care is an essential component of palliative and end-of-life care provision and is the responsibility of all staff and carers involved in the care of patients and families. As end-of-life care is a significant element of community nursing, this article explores the relevancy of spirituality to end-of-life practice, the challenge of defining spirituality and the attributes and skills required for the practice of spiritual care. The aim of is to encourage self reflection and open dialogue about the subject, thus enhancing community nurses\\' understanding of spiritual care practice. By reflecting and generating talk about the practice of spiritual care, it may become more normalized, recognized, and practically meaningful, thereby retaining its significance in holistic nursing.

  18. Reflections on Hope and Its Implications for End-of-Life Care.

    Mattes, Malcolm D; Sloane, Michelle A

    2015-05-01

    Physicians caring for individuals with life-altering, incurable illnesses often have a desire to convey a sense of hope while also helping their patients prepare for the end of life to minimize unnecessary suffering and grief. Unfortunately, in the United States, most people receive more-aggressive treatments toward the end of life than studies would suggest that they desire. This reflects the challenging task of balancing optimism and realism, and how providing a false sense of hope for a cure for too long a time while avoiding advance care planning may contribute significantly to the problem. This article explores the interplay of hope and advance care planning, and suggests a need for excellent individualized communication in the setting of advanced cancer to improve end-of-life care. © 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.

  19. End-of-life care beliefs among Hindu physicians in the United States.

    Ramalingam, Vijaya Sivalingam; Saeed, Fahad; Sinnakirouchenan, Ramapriya; Holley, Jean L; Srinivasan, Sinnakirouchenan

    2015-02-01

    Several studies from the United States and Europe showed that physicians' religiosity is associated with their approach to end-of-life care beliefs. No such studies have focused exclusively on Hindu physicians practicing in the United States. A 34-item questionnaire was sent to 293 Hindu physicians in the United States. Most participants believed that their religious beliefs do not influence their practice of medicine and do not interfere with withdrawal of life support. The US practice of discussing end-of-life issues with the patient, rather than primarily with the family, seems to have been adopted by Hindu physicians practicing in the United States. It is likely that the ethical, cultural, and patient-centered environment of US health care has influenced the practice of end-of-life care by Hindu physicians in this country. © The Author(s) 2013.

  20. Preliminary description of aging cats and dogs presented to a New Zealand first-opinion veterinary clinic at end-of-life.

    Gates, M C; Hinds, H J; Dale, A

    2017-11-01

    AIMS To conduct a preliminary investigation into the chronic disease conditions and clinical signs present in aging New Zealand companion animals at end-of-life and to describe the timin