Issues surrounding end-of-life decision-making

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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

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

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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.

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

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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…

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

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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.

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

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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.

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

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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.

End-of-life decision making in the ICU.

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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.

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

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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.

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

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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.

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

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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.

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

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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.

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

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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.

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

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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

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

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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.

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

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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.

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

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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.

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

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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.

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

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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...

Labelling of end-of-life decisions by physicians.

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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.

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

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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.

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

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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.

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

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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....

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

NARCIS (Netherlands)

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).

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

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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.

END-OF-LIFE DECISIONS IN DUTCH NEONATOLOGY

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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

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

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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.

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

NARCIS (Netherlands)

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.

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.

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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

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

NARCIS (Netherlands)

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

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

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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.

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

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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.

Ethical decision-making near the end of life.

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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.

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

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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.

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

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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.

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

Directory of Open Access Journals (Sweden)

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

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

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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

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

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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.

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

NARCIS (Netherlands)

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

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

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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

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

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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.

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

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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.

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

DEFF Research Database (Denmark)

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...

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

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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.

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

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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.

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

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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

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

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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.

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

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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.

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

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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.

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

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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.

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.

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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/

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

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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.

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

NARCIS (Netherlands)

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

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

NARCIS (Netherlands)

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

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

Science.gov (United States)

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.

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

NARCIS (Netherlands)

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

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

Science.gov (United States)

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

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

Directory of Open Access Journals (Sweden)

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

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

Science.gov (United States)

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

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

Science.gov (United States)

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

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

Science.gov (United States)

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

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

Science.gov (United States)

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

DEFF Research Database (Denmark)

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....

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

OpenAIRE

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...

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

NARCIS (Netherlands)

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

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

Directory of Open Access Journals (Sweden)

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

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

Science.gov (United States)

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…

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

Science.gov (United States)

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

Medical challenges at the end of the first ten decades of life.

Science.gov (United States)

Münzer, Thomas

2017-07-11

Demographic changes worldwide challenge the healthcare system. Advanced age is associated with a number of biological alterations that, together with concomitant comorbidities, increase the risk for functional decline by inducing functional disintegration. In this concept frailty and sarcopenia play an important role. Consequently the preservation of muscle mass and function are prominent targets of medicine in old age. In order to professionally care for persons in their last years of life several other factors influencing medical decisions regarding diagnostic and treatments are important. These factors concern the life expectancy, the person`s functional status the physicians involved in care and the family system. Balancing between over- and undertreatment in very old patients can be optimised by a goal-oriented decision making approach. Very old persons with poor decision making capacity might benefit from decisions made in a team. To be able to manage the challenges associated with the last decade of life, we need physicians who have the knowledge, the appropriate attitude towards frail old patients and the skills to communicate with different groups involved in care. Ideally old age medicine should become an integrative part of a unified national medical curriculum.

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

NARCIS (Netherlands)

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

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

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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.

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

NARCIS (Netherlands)

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,

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

NARCIS (Netherlands)

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

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

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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.…

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

OpenAIRE

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...

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

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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.

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

NARCIS (Netherlands)

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

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

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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.

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

Science.gov (United States)

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

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

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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

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

Directory of Open Access Journals (Sweden)

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

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

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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.

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

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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.

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

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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.

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

Directory of Open Access Journals (Sweden)

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

Uncharted terrain: preference construction at the end of life.

Science.gov (United States)

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.

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

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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.…

Clinical Impact of Education Provision on Determining Advance Care Planning Decisions among End Stage Renal Disease Patients Receiving Regular Hemodialysis in University Malaya Medical Centre.

Science.gov (United States)

Hing Wong, Albert; Chin, Loh Ee; Ping, Tan Li; Peng, Ng Kok; Kun, Lim Soo

2016-01-01

Advance care planning (ACP) is a process of shared decision-making about future health-care plans between patients, health care providers, and family members, should patients becomes incapable of participating in medical treatment decisions. ACP discussions enhance patient's autonomy, focus on patient's values and treatment preferences, and promote patient-centered care. ACP is integrated as part of clinical practice in Singapore and the United States. To assess the clinical impact of education provision on determining ACP decisions among end-stage renal disease patients on regular hemodialysis at University Malaya Medical Centre (UMMC). To study the knowledge and attitude of patients toward ACP and end-of-life issues. Fifty-six patients were recruited from UMMC. About 43 questions pretest survey adapted from Lyon's ACP survey and Moss's cardiopulmonary resuscitation (CPR) attitude survey was given to patients to answer. An educational brochure is then introduced to these patients, and a posttest survey carried out after that. The results were analyzed using SPSS version 22.0. Opinion on ACP, including CPR decisions, showed an upward trend on the importance percentage after the educational brochure exposure, but this was statistically not significant. Seventy-five percent of participants had never heard of ACP before, and only 3.6% had actually prepared a written advanced directive. The ACP educational brochure clinically impacts patients' preferences and decisions toward end-of-life care; however, this is statistically not significant. Majority of patients have poor knowledge on ACP. This study lays the foundation for execution of future larger scale clinical trials, and ultimately, the incorporation of ACP into clinical practice in Malaysia.

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

Science.gov (United States)

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.

Doctors' learning experiences in end-of-life care

DEFF Research Database (Denmark)

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...

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

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

Science.gov (United States)

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.

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

Directory of Open Access Journals (Sweden)

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

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

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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

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

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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.

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

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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.

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

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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.

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

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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.

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

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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.

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

NARCIS (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,

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

NARCIS (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,

Questioning care at the end of life.

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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

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

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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.

Attitude Towards End of Life Communication of Austrian Medical Students.

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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.

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

NARCIS (Netherlands)

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

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

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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

Portrayal of medical decision making around medical interventions life-saving encounters on three medical television shows.

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Schwei, Rebecca J; Jacobs, Elizabeth A; Wingert, Katherine; Montague, Enid

2015-07-01

Previous literature has shown that patients obtain information about the medical system from television shows. Additionally, shared decision making is regularly cited as the ideal way to make decisions during a medical encounter. Little information exists surrounding the characteristics of medical decision-making, such as who makes the decision, on medical television shows. We evaluate the characteristics of medical decisions in lifesaving encounters on medical television shows and evaluate if these characteristics were different on staged and reality television shows. We coded type of medical intervention, patient's ability to participate in decision, presence of patient advocate during decision, final decision maker, decision to use intervention, and controversy surrounding decision on three television shows. Frequencies by show were calculated and differences across the three television shows and between staged (ER) and reality ( BostonMed and Hopkins ) television shows were assessed with chi-square tests. The final data set included 37 episodes, 137 patients and 593 interventions. On ER, providers were significantly more likely to make the decision about the medical intervention without informing the patient when a patient was capable of making a decision compared to BostonMed or Hopkins (ptelevision shows we analyzed. It is possible that what patients see on television influences their expectations surrounding the decision making process and the use of medical interventions in everyday healthcare encounters.

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

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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.

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

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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.

Eliciting regret improves decision making at the end of life.

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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.

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.

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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.

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

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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.

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

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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.

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

NARCIS (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

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

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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.

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

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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.

Pharmacotherapy at the end-of-life.

LENUS (Irish Health Repository)

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.

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

NARCIS (Netherlands)

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

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

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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.

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

Directory of Open Access Journals (Sweden)

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

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.

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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

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

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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.

Challenges in end-of-life communication.

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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.

[Conscience clause in end-of-life care.

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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.

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

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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.

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

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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.

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

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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.

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

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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.

Health Care Professional Factors Influencing Shared Medical Decision Making in Korea

Directory of Open Access Journals (Sweden)

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.

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

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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.

Design for life-cycle profit with simultaneous consideration of initial manufacturing and end-of-life remanufacturing

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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.

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

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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.

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

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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.

End-of-Life Inventory Decisions of Service Parts

NARCIS (Netherlands)

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

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

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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

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

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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

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.

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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.

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

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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.

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.

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

Deferred Personal Life Decisions of Women Physicians.

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Bering, Jamie; Pflibsen, Lacey; Eno, Cassie; Radhakrishnan, Priya

2018-05-01

Inadequate work-life balance can have significant implications regarding individual performance, retention, and on the future of the workforce in medicine. The purpose of this study was to determine whether women physicians defer personal life decisions in pursuit of their medical career. We conducted a survey study of women physicians ages 20-80 from various medical specialties using a combination of social media platforms and women physicians' professional listservs with 801 survey responses collected from May through November 2015. The primary endpoint was whether women physicians deferred personal life decisions in pursuit of their medical career. Secondary outcomes include types of decisions deferred and correlations with age, hours worked per week, specialty, number of children, and career satisfaction. Respondents were categorized into deferred and nondeferred groups. Personal decision deferments were reported by 64% of respondents. Of these, 86% reported waiting to have children and 22% reported waiting to get married. Finally, while 85% of women in the nondeferment group would choose medicine again as a career, only 71% of women in the deferment group would do so (p job satisfaction, and insurance/administrative burden. The results of this survey have significant implications on the future of the workforce in medicine. Overall, our analysis shows that 64% of women physicians defer important life decisions in pursuit of their medical career. With an increase in the number of women physicians entering the workforce, lack of support and deferred personal decisions have a potential negative impact on individual performance and retention. Employers must consider the economic impact and potential workforce shortages that may develop if these issues are not addressed.

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

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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.

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

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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.

End-of-life care: Indian perspective

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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

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

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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.

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

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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.

Attitudes and behaviors of Japanese physicians concerning withholding and withdrawal of life-sustaining treatment for end-of-life patients: results from an Internet survey

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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.

Symptomatic Control in End-of-Life Patients

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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.

What influences parents' decisions to limit or withdraw life support?

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Sharman, Mahesh; Meert, Kathleen L; Sarnaik, Ashok P

2005-09-01

Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the use of closed-ended questionnaires. We prospectively identified and described parents' self-reported influences on decisions to forgo life support from their children. Deeper understanding of parents' views will allow physicians to focus end-of-life discussions on factors important to parents and help resolve conflicts. Prospective, qualitative pilot study. Pediatric intensive care unit of a university-affiliated children's hospital. A total of 14 parents of ten children whose pediatric intensive care unit physician had made a recommendation to limit or withdraw life support. : In-depth, semistructured interviews were conducted with parents during their decision-making process. Factors influencing the parents in this study in their decision to forgo life support included their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care. Parents in this study expressed the desire to do what is best for their child but struggled with feelings of selfishness, guilt, and the need to avoid agony and sorrow. Physician recommendations, review of options, and joint formulation of a plan helped parents gain a sense of control over their situation. Parents of eight children agreed to forgo life support and parents of two did not. Prospective interviews with open-ended questions identified factors influencing parents' decision making not previously described in the critical care literature such as parents' past experiences with end-of-life decisions and their anticipated emotional adjustments and

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

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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.

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

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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

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

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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.

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

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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".

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

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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.

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.

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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.

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.

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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.

Fighting for Dear Life: Christians and Aggressive End-of-Life Care.

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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.

Buddhist ethics and end-of-life care decisions.

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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.

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

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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

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

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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

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

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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.

End-of-life content in treatment guidelines for life-limiting diseases.

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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

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

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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.

End of Life Issues

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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: ...

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

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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.

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.

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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

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

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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.

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

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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.

The Integrated Medical Model: A Risk Assessment and Decision Support Tool for Space Flight Medical Systems

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Kerstman, Eric; Minard, Charles; Saile, Lynn; deCarvalho, Mary Freire; Myers, Jerry; Walton, Marlei; Butler, Douglas; Iyengar, Sriram; Johnson-Throop, Kathy; Baumann, David

2009-01-01

The Integrated Medical Model (IMM) is a decision support tool that is useful to mission planners and medical system designers in assessing risks and designing medical systems for space flight missions. The IMM provides an evidence based approach for optimizing medical resources and minimizing risks within space flight operational constraints. The mathematical relationships among mission and crew profiles, medical condition incidence data, in-flight medical resources, potential crew functional impairments, and clinical end-states are established to determine probable mission outcomes. Stochastic computational methods are used to forecast probability distributions of crew health and medical resource utilization, as well as estimates of medical evacuation and loss of crew life. The IMM has been used in support of the International Space Station (ISS) medical kit redesign, the medical component of the ISS Probabilistic Risk Assessment, and the development of the Constellation Medical Conditions List. The IMM also will be used to refine medical requirements for the Constellation program. The IMM outputs for ISS and Constellation design reference missions will be presented to demonstrate the potential of the IMM in assessing risks, planning missions, and designing medical systems. The implementation of the IMM verification and validation plan will be reviewed. Additional planned capabilities of the IMM, including optimization techniques and the inclusion of a mission timeline, will be discussed. Given the space flight constraints of mass, volume, and crew medical training, the IMM is a valuable risk assessment and decision support tool for medical system design and mission planning.

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

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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.

The role of law in decisions to withhold and withdraw life-sustaining treatment from adults who lack capacity: a cross-sectional study.

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White, Benjamin P; Willmott, Lindy; Williams, Gail; Cartwright, Colleen; Parker, Malcolm

2017-05-01

To determine the role played by law in medical specialists' decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. Cross-sectional postal survey of medical specialists. The two largest Australian states by population. 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. Compliance with law and the impact of legal knowledge on compliance. 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law 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://www.bmj.com/company/products-services/rights-and-licensing/.

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

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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.

Opting out of dialysis – Exploring patients' decisions to forego dialysis in favour of conservative non-dialytic management for end-stage renal disease.

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Seah, Angeline S T; Tan, Fiona; Srinivas, Subramaniam; Wu, Huei Yei; Griva, Konstadina

2015-10-01

Dialysis prolongs the life of people with end-stage renal disease (ESRD), but for patients who are elderly and suffer multiple comorbid illnesses the benefits of dialysis may be outweighed by its negative consequences. Non-dialytic conservative management has therefore become an alternative treatment route, yet little is known on patients' experience with choosing end-of-life treatment. To gain insight into the decision-making process leading to opting out of dialysis and the experience with conservative non-dialytic management from the patients' perspective. Qualitative study using semi-structured interviews. Interpretative phenomenological analysis was undertaken as the framework for data analysis. N = 9 ESRD participants who have taken the decision to forego dialysis were recruited from the advanced care programme under the National Healthcare Group, Singapore. Participants discussed life since ESRD diagnosis, and the personal and contextual factors that led them to choose conservative management. The perceived physical and financial burden of dialysis both for the individual but most importantly for their family, uncertainty over likely gains over risks which were fuelled by communication of negative dialysis stories of others, coupled with sense of life completion and achievement led them to refuse dialysis. All participants took ownership of their decision despite contrary advice by doctors and were content with their decision and current management. Study highlights the factors driving patients' decisions for conservative non-dialytic management over dialysis to allow medical professionals to offer appropriate support to patients through their decision-making process and in caring them for the rest of their lives. © 2013 John Wiley & Sons Ltd.

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

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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.

GPs and end of life decisions : views and experiences

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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 ...

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

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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.

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

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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

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

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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.

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

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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.

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

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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.

End of life and life after death - issues to be addressed

Directory of Open Access Journals (Sweden)

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.

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

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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.

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

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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.

The Effect of Providing Life Support on Nurses' Decision Making Regarding Life Support for Themselves and Family Members in Japan.

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Shaku, Fumio; Tsutsumi, Madoka

2016-12-01

Decision making in terminal illness has recently received increased attention. In Japan, patients and their families typically make decisions without understanding either the severity of illness or the efficacy of life-supporting treatments at the end of life. Japanese culture traditionally directs the family to make decisions for the patient. This descriptive study examined the influence of the experiences of 391 Japanese nurses caring for dying patients and family members and how that experience changed their decision making for themselves and their family members. The results were mixed but generally supported the idea that the more experience nurses have in caring for the dying, the less likely they would choose to institute lifesupport measures for themselves and family members. The results have implications for discussions on end-of-life care. © The Author(s) 2016.

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

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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.

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

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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.

Medical practice and legal background of decisions for severely ill newborn infants: viewpoints from seven European countries.

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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.

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

African Journals Online (AJOL)

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-.

Living Wills and Advance Directives for Medical Decisions

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... 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- ...

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

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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.

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

Science.gov (United States)

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.

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

Directory of Open Access Journals (Sweden)

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.

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

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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

Parental decision-making for medically complex infants and children: An integrated literature review

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Allen, Kimberly A.

2014-01-01

Background Many children with life-threatening conditions who would have died at birth are now surviving months to years longer than previously expected. Understanding how parents make decisions is necessary to prevent parental regret about decision-making, which can lead to psychological distress, decreased physical health, and decreased quality of life for the parents. Objective The aim of this integrated literature review was to describe possible factors that affect parental decision-making for medically complex children. The critical decisions included continuation or termination of a high-risk pregnancy, initiation of life-sustaining treatments such as resuscitation, complex cardiothoracic surgery, use of experimental treatments, end-of-life care, and limitation of care or withdrawal of support. Design PubMed, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO were searched using the combined key terms ‘parents and decision-making’ to obtain English language publications from 2000 to June 2013. Results The findings from each of the 31 articles retained were recorded. The strengths of the empirical research reviewed are that decisions about initiating life support and withdrawing life support have received significant attention. Researchers have explored how many different factors impact decision-making and have used multiple different research designs and data collection methods to explore the decision-making process. These initial studies lay the foundation for future research and have provided insight into parental decision-making during times of crisis. Conclusions Studies must begin to include both parents and providers so that researchers can evaluate how decisions are made for individual children with complex chronic conditions to understand the dynamics between parents and parent–provider relationships. The majority of studies focused on one homogenous diagnostic group of premature infants and children with complex congenital

Parental decision-making for medically complex infants and children: an integrated literature review.

Science.gov (United States)

Allen, Kimberly A

2014-09-01

Many children with life-threatening conditions who would have died at birth are now surviving months to years longer than previously expected. Understanding how parents make decisions is necessary to prevent parental regret about decision-making, which can lead to psychological distress, decreased physical health, and decreased quality of life for the parents. The aim of this integrated literature review was to describe possible factors that affect parental decision-making for medically complex children. The critical decisions included continuation or termination of a high-risk pregnancy, initiation of life-sustaining treatments such as resuscitation, complex cardiothoracic surgery, use of experimental treatments, end-of-life care, and limitation of care or withdrawal of support. PubMed, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO were searched using the combined key terms 'parents and decision-making' to obtain English language publications from 2000 to June 2013. The findings from each of the 31 articles retained were recorded. The strengths of the empirical research reviewed are that decisions about initiating life support and withdrawing life support have received significant attention. Researchers have explored how many different factors impact decision-making and have used multiple different research designs and data collection methods to explore the decision-making process. These initial studies lay the foundation for future research and have provided insight into parental decision-making during times of crisis. Studies must begin to include both parents and providers so that researchers can evaluate how decisions are made for individual children with complex chronic conditions to understand the dynamics between parents and parent-provider relationships. The majority of studies focused on one homogenous diagnostic group of premature infants and children with complex congenital heart disease. Thus comparisons across other child

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

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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.

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

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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.

REUSE OF AUTOMOTIVE COMPONENTS FROM DISMANTLED END OF LIFE VEHICLES

Directory of Open Access Journals (Sweden)

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.

[French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions].

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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.

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

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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

Medical decision making and medical education: challenges and opportunities.

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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.

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

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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

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

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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.

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.

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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

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

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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

Swedish medical students' expectations of their future life.

OpenAIRE

Diderichsen, S.; Andersson, J.; Johansson, E.E.; Verdonk, P.; Lagro-Janssen, T.; Hamberg, K.

2011-01-01

Objectives: To investigate future life expectations among male and female medical students in their first and final year. Methods: The study was cross-sectional and conducted at a Swedish medical school. Out of 600 invited students, 507 (85%) answered an open-ended question about their future life, 298 (59%) first-year students and 209 (41%) last-year students. Women constituted 60% of the respondents. A mixed model design was applied; qualitative content analysis was utilized to create stati...

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

Science.gov (United States)

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.

Mapping Perceptions of Lupus Medication Decision-Making Facilitators: The Importance of Patient Context.

Science.gov (United States)

Qu, Haiyan; Shewchuk, Richard M; Alarcón, Graciela; Fraenkel, Liana; Leong, Amye; Dall'Era, Maria; Yazdany, Jinoos; Singh, Jasvinder A

2016-12-01

Numerous factors can impede or facilitate patients' medication decision-making and adherence to physicians' recommendations. Little is known about how patients and physicians jointly view issues that affect the decision-making process. Our objective was to derive an empirical framework of patient-identified facilitators to lupus medication decision-making from key stakeholders (including 15 physicians, 5 patients/patient advocates, and 8 medical professionals) using a patient-centered cognitive mapping approach. We used nominal group patient panels to identify facilitators to lupus treatment decision-making. Stakeholders independently sorted the identified facilitators (n = 98) based on their similarities and rated the importance of each facilitator in patient decision-making. Data were analyzed using multidimensional scaling and hierarchical cluster analysis. A cognitive map was derived that represents an empirical framework of facilitators for lupus treatment decisions from multiple stakeholders' perspectives. The facilitator clusters were 1) hope for a normal/healthy life, 2) understand benefits and effectiveness of taking medications, 3) desire to minimize side effects, 4) medication-related data, 5) medication effectiveness for "me," 6) family focus, 7) confidence in physician, 8) medication research, 9) reassurance about medication, and 10) medication economics. Consideration of how different stakeholders perceive the relative importance of lupus medication decision-making clusters is an important step toward improving patient-physician communication and effective shared decision-making. The empirically derived framework of medication decision-making facilitators can be used as a guide to develop a lupus decision aid that focuses on improving physician-patient communication. © 2016, American College of Rheumatology.

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

DEFF Research Database (Denmark)

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...

Dispositional optimism, self-framing and medical decision-making.

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Zhao, Xu; Huang, Chunlei; Li, Xuesong; Zhao, Xin; Peng, Jiaxi

2015-03-01

Self-framing is an important but underinvestigated area in risk communication and behavioural decision-making, especially in medical settings. The present study aimed to investigate the relationship among dispositional optimism, self-frame and decision-making. Participants (N = 500) responded to the Life Orientation Test-Revised and self-framing test of medical decision-making problem. The participants whose scores were higher than the middle value were regarded as highly optimistic individuals. The rest were regarded as low optimistic individuals. The results showed that compared to the high dispositional optimism group, participants from the low dispositional optimism group showed a greater tendency to use negative vocabulary to construct their self-frame, and tended to choose the radiation therapy with high treatment survival rate, but low 5-year survival rate. Based on the current findings, it can be concluded that self-framing effect still exists in medical situation and individual differences in dispositional optimism can influence the processing of information in a framed decision task, as well as risky decision-making. © 2014 International Union of Psychological Science.

Patients' participation in decision-making in the medical field

DEFF Research Database (Denmark)

Glasdam, Stinne; Oeye, Christine; Thrysøe, Lars

2015-01-01

is going to happen in his life. Both professionals and patients have an underlying, tacit preconception that every medical treatment is better than no treatment. Patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice......, which creates resistance to the some parts of the decision-making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal frame and medical logic. The decision-making competence in relation to the choice of treatment is placed away...

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

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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.

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

NARCIS (Netherlands)

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

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

Science.gov (United States)

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 ...

Lessons learned by (from?) an economist working in medical decision making.

Science.gov (United States)

Wakker, Peter P

2008-01-01

This article is a personal account of the author's experiences as an economist working in medical decision making. He discusses the differences between economic decision theory and medical decision making and gives examples of the mutual benefits resulting from interactions. In particular, he discusses the pros and cons of different methods for measuring quality of life (or, as economists would call it, utility), including the standard gamble, the time tradeoff, and the healthy-years equivalent methods.

Moral distress in end-of-life care in the intensive care unit.

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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.

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

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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.

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

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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.

Patient engagement in healthcare: pathways for effective medical decision making

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Serena Barello

2015-04-01

Full Text Available Making patients protagonists of decisions about their care is a primacy in the 21st century medical ethics. Precisely, to favor shared treatment decisions potentially enables patients’ autonomy and self-determination, and protects patients’ rights to make decisions about their own future care. To fully accomplish this goal, medicine should take into account the complexity of the healthcare decision making processes: patients may experience dilemmas when having to take decisions that not only concern their patient role/identity but also involve the psychosocial impact of treatments on their overall life quality. A deeper understanding of the patients’ expected role in the decision making process across their illness journey may favor the optimal implementation of this practice into the day-to-day medical agenda. In this paper, authors discuss the value of assuming the Patient Health Engagement Model to sustain successful pathways for effective medical decision making throughout the patient’s illness course. This model and its relational implication for the clinical encounter might be the base for an innovative “patient-doctor relational agenda” able to sustain an “engagement-sensitive” medical decision making.

United States Acculturation and Cancer Patients’ End-of-Life Care

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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

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

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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.