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

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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.

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.

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.

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

Directory of Open Access Journals (Sweden)

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.

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.…

End-of-life decisions: Christian perspectives.

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Stempsey, William E

1997-12-01

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

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

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

2004-01-01

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

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.

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.…

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

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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.

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 Decisions and Advanced Old Age

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Stoyles

2014-07-01

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

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

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

2016-07-01

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

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

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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.

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

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

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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

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.

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 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.

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

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

2016-01-01

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

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 end-of-life medical decisions: the ITAELD study].

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Miccinesi, Guido; Puliti, Donella; Paci, Eugenio

2011-01-01

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

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

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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

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

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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.

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

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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

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

Directory of Open Access Journals (Sweden)

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.

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.

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.

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

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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

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

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

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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.

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.

[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.

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.

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

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Kassim, Puteri Nemie Jahn; Alias, Fadhlina

2015-06-01

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

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

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.

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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.

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.

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.

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

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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

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

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.

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

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

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

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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

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

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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.

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

Science.gov (United States)

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

2011-01-01

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

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

2012-12-03

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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.

Science.gov (United States)

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

Labelling of end-of-life decisions by physicians

NARCIS (Netherlands)

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

2014-01-01

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

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

DEFF Research Database (Denmark)

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...

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

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

Directory of Open Access Journals (Sweden)

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.

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...

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

Science.gov (United States)

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

Eliciting regret improves decision making at the end of life.

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

Uncharted terrain: preference construction at the end of life.

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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.

Competence and Quality in Real-Life Decision Making.

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Geisler, Martin; Allwood, Carl Martin

2015-01-01

What distinguishes a competent decision maker and how should the issue of decision quality be approached in a real-life context? These questions were explored in three studies. In Study 1, using a web-based questionnaire and targeting a community sample, we investigated the relationships between objective and subjective indicators of real-life decision-making success. In Study 2 and 3, targeting two different samples of professionals, we explored if the prevalent cognitively oriented definition of decision-making competence could be beneficially expanded by adding aspects of competence in terms of social skills and time-approach. The predictive power for each of these three aspects of decision-making competence was explored for different indicators of real-life decision-making success. Overall, our results suggest that research on decision-making competence would benefit by expanding the definition of competence, by including decision-related abilities in terms of social skills and time-approach. Finally, the results also indicate that individual differences in real-life decision-making success profitably can be approached and measured by different criteria.

Competence and Quality in Real-Life Decision Making

Science.gov (United States)

2015-01-01

What distinguishes a competent decision maker and how should the issue of decision quality be approached in a real-life context? These questions were explored in three studies. In Study 1, using a web-based questionnaire and targeting a community sample, we investigated the relationships between objective and subjective indicators of real-life decision-making success. In Study 2 and 3, targeting two different samples of professionals, we explored if the prevalent cognitively oriented definition of decision-making competence could be beneficially expanded by adding aspects of competence in terms of social skills and time-approach. The predictive power for each of these three aspects of decision-making competence was explored for different indicators of real-life decision-making success. Overall, our results suggest that research on decision-making competence would benefit by expanding the definition of competence, by including decision-related abilities in terms of social skills and time-approach. Finally, the results also indicate that individual differences in real-life decision-making success profitably can be approached and measured by different criteria. PMID:26545239

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

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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.

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

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

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

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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.

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,

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

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.

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

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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.

END-OF-LIFE DECISIONS IN DUTCH NEONATOLOGY

NARCIS (Netherlands)

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

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.

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.

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).

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.

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.; 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

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

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

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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.

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.

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.

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

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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.

[Quality of life or life expectancy? Criteria and sources of information in the decision-making of patients undergoing aortic valve surgery].

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Schmied, Wolfram; Barnick, Saskia; Heimann, Dierk; Schäfers, Hans-Joachim; Köllner, Volker

2015-01-01

Physicians are expected to involve patients adequately in the decision-making process prior to surgery. To this end, it is essential to have knowledge about the potential reasons for such a decision. In this study we investigated which information sources and decision criteria are important to patients prior to aortic valve surgery. A consecutive sample of 468 patients (70.1%m, aged 66.9±14.2 years) was examined 2 years after aortic valve replacement or reconstruction with a self-developed questionnaire. Preoperative discussion with a cardiologist or a cardiac surgeon was the information source patients used most frequently and felt to be the most helpful. The most important decision criterion was quality of life, followed by life expectancy and likelihood of reoperation. Two years postoperatively, 97.3% of the patients were satisfied with their decision. Preoperative counseling by a physician plays an essential role in the decision-making process prior to cardiac surgery. Patients want to be involved in decision-making, though they do not want to bear the full responsibility.

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.

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

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Dagmar Elfriede Rinnenburger

2012-01-01

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

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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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.

Science.gov (United States)

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

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...

Using intuition in fuzzy front-end decision-making : a conceptual framework

NARCIS (Netherlands)

Eling, K.; Griffin, A.; Langerak, F.

2014-01-01

The goal of decision-making during the execution of the fuzzy front end (FFE) is to develop a creative new product concept. Although intuitive decision-making has been found to increase new product creativity, the theoretical knowledge base as to why and under which conditions intuition use during

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

A qualitative study of women's decision-making at the end of IVF treatment.

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Peddie, V L; van Teijlingen, E; Bhattacharya, S

2005-07-01

The decision not to pursue further in vitro fertilization (IVF) after one or more unsuccessful attempts is an important and often difficult one for couples. Relatively little is known about the woman's perception of this decision-making process. The aim of this study was to examine patients' perspectives of decision-making, including circumstances influencing it and satisfaction with the decision-making process. Semi-structured interviews were conducted with a purposive sample of 25 women who had decided to end treatment after unsuccessful IVF treatment. Interviews were tape-recorded and transcribed by means of thematic analysis using the open coding technique. Women experienced difficulty in accepting that their infertility would remain unresolved. Many felt that they had started with unrealistic expectations of treatment success and felt vulnerable to the pressures of both the media and society. Although the decision to end treatment was difficult, it offered many women a way out of the emotional distress caused by IVF; however, the process of decision-making created a sense of 'confrontation' for the women in which they had to address issues they had previously avoided. Adoptive parents perceived less societal pressure than those who remained childless. Efforts to improve the psychological preparation of couples who decide to end IVF treatment should be directed towards examination of the existing system of consultation, which has certain limitations in terms of the quality of communication and the provision of post-treatment support. Further efforts to develop strategies, which facilitate the decision-making process, should be considered.

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.

Competence and Quality in Real-Life Decision Making

OpenAIRE

Geisler, Martin; Allwood, Carl Martin

2015-01-01

What distinguishes a competent decision maker and how should the issue of decision quality be approached in a real-life context? These questions were explored in three studies. In Study 1, using a web-based questionnaire and targeting a community sample, we investigated the relationships between objective and subjective indicators of real-life decision-making success. In Study 2 and 3, targeting two different samples of professionals, we explored if the prevalent cognitively oriented definiti...

Putting the use of intuition for fuzzy front end decision making on the research agenda

NARCIS (Netherlands)

Eling, K.; Langerak, F.

2011-01-01

Decision making literature suggests that intuitive decision making is more appropriate than the established rational decision making approaches to handle the specific information processing needs of the fuzzy front end (FFE) of new product development. However, these earlier studies cannot be

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

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

Directory of Open Access Journals (Sweden)

Mortier Freddy

2008-02-01

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

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

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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.

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".

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.

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

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

2013-04-01

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

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

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.

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

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

Hospice decision making: diagnosis makes a difference.

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Waldrop, Deborah P; Meeker, Mary Ann

2012-10-01

This study explored the process of decision making about hospice enrollment and identified factors that influence the timing of that decision. This study employed an exploratory, descriptive, cross-sectional design and was conducted using qualitative methods. In-depth in-person semistructured interviews were conducted with 36 hospice patients and 55 caregivers after 2 weeks of hospice care. The study was guided by Janis and Mann's conflict theory model (CTM) of decision making. Qualitative data analysis involved a directed content analysis using concepts from the CTM. A model of hospice enrollment decision making is presented. Concepts from the CTM (appraisal, surveying and weighing the alternatives, deliberations, adherence) were used as an organizing framework to illustrate the dynamics. Distinct differences were found by diagnosis (cancer vs. other chronic illness, e.g., heart and lung diseases) during the pre-encounter phase or before the hospice referral but no differences emerged during the post-encounter phase. Differences in decision making by diagnosis suggest the need for research about effective means for tailored communication in end-of-life decision making by type of illness. Recognition that decision making about hospice admission varies is important for clinicians who aim to provide person-centered and family-focused care.

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

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

Science.gov (United States)

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.

Decision-Making for Supply Chain Integration Supply Chain Integration

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Lettice, Fiona; Durowoju, Olatunde

2012-01-01

Effective supply chain integration, and the tight co-ordination it creates, is an essential pre-requisite for successful supply chain management.  Decision-Making for Supply Chain Integration is a practical reference on recent research in the area of supply chain integration focusing on distributed decision-making problems. Recent applications of various decision-making tools for integrating supply chains are covered including chapters focusing on: •Supplier selection, pricing strategy and inventory decisions in multi-level supply chains, •RFID-enabled distributed decision-making, •Operational risk issues and time-critical decision-making for sensitive logistics nodes, Modelling end to end processes to improve supply chain integration, and •Integrated systems to improve service delivery and optimize resource use. Decision-Making for Supply Chain Integration provides an insight into the tools and methodologies of this field with support from real-life case studies demonstrating successful application ...

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

Science.gov (United States)

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.

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.

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.

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

Science.gov (United States)

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.

Evaluation of End-Products in Architecture Design Process: A Fuzzy Decision-Making Model

Directory of Open Access Journals (Sweden)

Serkan PALABIYIK

2012-06-01

Full Text Available This paper presents a study on the development of a fuzzy multi-criteria decision-making model for the evaluation of end products of the architectural design process. Potentials of the developed model were investigated within the scope of architectural design education, specifically an international design studio titled “Design for Disassembly and Reuse: Design & Building Multipurpose Transformable Pavilions.” The studio work followed a design process that integrated systematic and heuristic thinking. The design objectives and assessment criteria were clearly set out at the beginning of the process by the studio coordinator with the aim of narrowing the design space and increasing awareness of the consequences of design decisions. At the end of the design process, designs produced in the studio were evaluated using the developed model to support decision making. The model facilitated the identification of positive and negative aspects of the designs and selection of the design alternative that best met the studio objectives set at the beginning.

Social modulation of decision-making: a cross-species review

Science.gov (United States)

van den Bos, Ruud; Jolles, Jolle W.; Homberg, Judith R.

2013-01-01

Taking decisions plays a pivotal role in daily life and comprises a complex process of assessing and weighing short-term and long-term costs and benefits of competing actions. Decision-making has been shown to be affected by factors such as sex, age, genotype, and personality. Importantly, also the social environment affects decisions, both via social interactions (e.g., social learning, cooperation and competition) and social stress effects. Although everyone is aware of this social modulating role on daily life decisions, this has thus far only scarcely been investigated in human and animal studies. Furthermore, neuroscientific studies rarely discuss social influence on decision-making from a functional perspective such as done in behavioral ecology studies. Therefore, the first aim of this article is to review the available data of the influence of the social context on decision-making both from a causal and functional perspective, drawing on animal and human studies. Also, there is currently still a gap between decision-making in real life where influences of the social environment are extensive, and decision-making as measured in the laboratory, which is often done without any (deliberate) social influences. However, methods are being developed to bridge this gap. Therefore, the second aim of this review is to discuss these methods and ways in which this gap can be increasingly narrowed. We end this review by formulating future research questions. PMID:23805092

The Effect of Decision-Making Skill Training Programs on Self-Esteem and Decision-Making Styles

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Colakkadioglu, Oguzhan; Celik, D. Billur

2016-01-01

Problem Statement: Decision making is a critical cognitive process in every area of human life. In this process, the individuals play an active role and obtain outputs with their functional use of decision-making skills. Therefore, the decision-making process can affect the course of life, life satisfaction, and the social relations of an…

Decision-making heuristics and biases across the life span.

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Strough, Jonell; Karns, Tara E; Schlosnagle, Leo

2011-10-01

We outline a contextual and motivational model of judgment and decision-making (JDM) biases across the life span. Our model focuses on abilities and skills that correspond to deliberative, experiential, and affective decision-making processes. We review research that addresses links between JDM biases and these processes as represented by individual differences in specific abilities and skills (e.g., fluid and crystallized intelligence, executive functioning, emotion regulation, personality traits). We focus on two JDM biases-the sunk-cost fallacy (SCF) and the framing effect. We trace the developmental trajectory of each bias from preschool through middle childhood, adolescence, early adulthood, and later adulthood. We conclude that life-span developmental trajectories differ depending on the bias investigated. Existing research suggests relative stability in the framing effect across the life span and decreases in the SCF with age, including in later life. We highlight directions for future research on JDM biases across the life span, emphasizing the need for process-oriented research and research that increases our understanding of JDM biases in people's everyday lives. © 2011 New York Academy of Sciences.

Decision-making heuristics and biases across the life span

Science.gov (United States)

Strough, JoNell; Karns, Tara E.; Schlosnagle, Leo

2013-01-01

We outline a contextual and motivational model of judgment and decision-making (JDM) biases across the life span. Our model focuses on abilities and skills that correspond to deliberative, experiential, and affective decision-making processes. We review research that addresses links between JDM biases and these processes as represented by individual differences in specific abilities and skills (e.g., fluid and crystallized intelligence, executive functioning, emotion regulation, personality traits). We focus on two JDM biases—the sunk-cost fallacy (SCF) and the framing effect. We trace the developmental trajectory of each bias from preschool through middle childhood, adolescence, early adulthood, and later adulthood. We conclude that life-span developmental trajectories differ depending on the bias investigated. Existing research suggests relative stability in the framing effect across the life span and decreases in the SCF with age, including in later life. We highlight directions for future research on JDM biases across the life span, emphasizing the need for process-oriented research and research that increases our understanding of JDM biases in people’s everyday lives. PMID:22023568

Effect of the Contents in Advance Directives on Individuals' Decision-Making.

Science.gov (United States)

Park, Jae Yoon; Lim, Chi-Yeon; Puurveen, Gloria; Kim, Do Yeun; Lee, Jae Hang; Do, Han Ho; Kim, Kyung Soo; Yoo, Kyung Don; Kim, Hyo Jin; Kim, Yunmi; Shin, Sung Joon

2018-01-01

Completing an advance directive offers individuals the opportunity to make informed choices about end-of-life care. However, these decisions could be influenced in different ways depending on how the information is presented. We randomly presented 185 participants with four distinct types of advance directive: neutrally framed (as reference), negatively framed, religiously framed, and a combination. Participants were asked which interventions they would like to receive at the end of life. Between 60% and 70% of participants responded "accept the special interventions" on the reference form. However, the majority (70%-90%) chose "refuse the interventions" on the negative form. With respect to the religious form, 70% to 80% chose "not decided yet." Participants who refused special life-sustaining treatments were older, female, and with better prior knowledge about advance directives. Our findings imply that the specific content of advance directives could affect decision-making with regard to various interventions for end-of-life care.

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.

Real-life decision making in college students. I: Consistency across specific decisions.

Science.gov (United States)

Galotti, Kathleen M; Wiener, Hillary J D; Tandler, Jane M

2014-01-01

First-year undergraduates participated in a short-term longitudinal study of real-life decision making over their first 14 months of college. They were surveyed about 7 different decisions: choosing courses for an upcoming term (3 different terms), choosing an academic major (twice), planning for the upcoming summer, and planning for sophomore-year housing. Participants showed moderate levels of consistency in the options they considered and in the criteria they used to decide between options, with about half of the options or criteria being used at 2 different points on the decision repeatedly studied. Participants varied somewhat in structural consistency, the tendency to consider the same number of options or criteria across decisions. They also varied in the way they integrated information across decision-making tasks. We suggest that people attempt to keep the information demands of the task within workable limits, sometimes sacrificing consistency as a result.

End of Life Issues

Science.gov (United States)

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: ...

ORIGINAL ARTICLES Medical futility and end-of-life care

African Journals Online (AJOL)

2008-04-01

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

Social modulation of decision-making: a cross-species review

Directory of Open Access Journals (Sweden)

Ruud eVan Den Bos

2013-06-01

Full Text Available Taking decisions plays a pivotal role in daily life and comprises a complex process of assessing and weighing short-term and long-term costs and benefits of competing actions. Decision-making has been shown to be affected by factors such as sex, age, genotype and personality. Importantly, also the social environment affects decisions, both via social interactions (e.g. social learning, cooperation and competition and social stress effects. Although everyone is aware of this social modulating role on daily life decisions, this has thus far only scarcely been investigated in human and animal studies. Furthermore, neuroscientific studies rarely discuss social influence on decision-making from a functional perspective such as done in behavioural ecology studies. Therefore, the first aim of this article is to review the available data of the influence of the social context on decision-making both from a causal and functional perspective, drawing on animal and human studies. Also, there is currently still a gap between decision-making in real life where influences of the social environment are extensive, and decision-making as measured in the laboratory, which is often done without any (deliberate social influences. However, methods are being developed to bridge this gap. Therefore, the second aim of this review is to discuss these methods and ways in which this gap can be increasingly narrowed. We end this review by formulating future research questions.

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

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.

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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…

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.

Multiple criteria decision making with life cycle assessment for material selection of composites

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A. S. Milani

2011-12-01

Full Text Available With the advancement of interdisciplinary approaches in today’s modern engineering, current efforts in optimal design of composites include seeking material selection protocols that can (1 simultaneously consider a series of mechanical/electrical/chemical cost criteria over a set of alternative material options, and (2 closely take into account environmental aspects of final products including recycling and end-of-life disposal options. In this paper, in addition to a review of some recent experimental and methodological advances in the above areas, a new application of multiple criteria decision making (MCDM is presented to deal with decision conflicts often seen among design criteria in composite material selection with the help of life cycle assessment (LCA. To show the application, an illustrative case study on a plastic gear material selection is conducted where the cost, mechanical and thermal properties along with environmental impact criteria are to be satisfied simultaneously. A pure plastic gear is compared to a Polyethylene terephthalate (PET/aluminum-powder composite alternative. Results suggest that simple MCDM models, including a signal-to-noise measure adapted to MCDM in the same case study, can be used to explore both trade-offs and design break-even points in large decision spaces as the decision maker’s perspective over environmental, material performance and cost attributes change during the design process. More advanced topics including the account of material data uncertainties are addressed.

The Forms and Functions of Real-Life Moral Decision-Making.

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Krebs, Dennis L.; Denton, Kathy; Wark, Gillian

1997-01-01

Observes that the Kohlbergian model of morality does not give a good account of the ways in which people make moral decisions in their everyday lives. Argues that a functional model of moral judgment and moral behavior derived from evolutionary theory may supply a better account of real-life morality. (DSK)

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

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Weihua Zhang

2013-01-01

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

Application of preference selection index method for decision making over the design stage of production system life cycle

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Rajesh Attri

2015-07-01

Full Text Available The life cycle of production system shows the progress of production system from the inception to the termination of the system. During each stage, mainly in the design stage, certain strategic decisions have to be taken. These decisions are more complex as the decision makers have to assess a wide range of alternatives based on a set of conflicting criteria. As the decision making process is found to be unstructured, characterized by domain dependent knowledge, there is a need to apply an efficient multi-criteria decision making (MCDM tool to help the decision makers in making correct decisions. This paper explores the application of a novel MCDM method i.e. Preference selection index (PSI method to solve various decision-making problems that are generally encountered in the design stage of production system life cycle. To prove the potentiality, applicability and accuracy of PSI method in solving decision making problem during the design stage of production system life cycle, five examples are cited from the literature and are compared with the results obtained by the past researchers.

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

Science.gov (United States)

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

2017-01-01

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

Relationship of External Influence to Parental Distress in Decision Making Regarding Children with a Life-Threatening Illness

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Luce, Mary Frances; Nelson, Robert M.

2011-01-01

Objective To examine the relationship of external influence to parental distress when making a decision about research or treatment for a child with a life-threatening illness and to test potential moderators of this relationship. Methods Parents (n = 219) who made a decision about research or treatment for a child completed measures of external influence, distress, decision-making preference, and coping. Results More external influence was associated with more hostility, uncertainty, and confusion. Decision-making preference and coping style moderated the relationship between external influence and distress: More external influence was associated with more distress when decision-making preference was low and task-focused coping was high. Conclusions External influence appears to be related to distress in parents making research and treatment decisions for children with life-threatening illnesses. However, it is important to consider parent characteristics, such as decision-making preference and coping style, when examining the effects of contextual factors on distress during decision making. PMID:21693541

Relationship of external influence to parental distress in decision making regarding children with a life-threatening illness.

Science.gov (United States)

Miller, Victoria A; Luce, Mary Frances; Nelson, Robert M

2011-01-01

To examine the relationship of external influence to parental distress when making a decision about research or treatment for a child with a life-threatening illness and to test potential moderators of this relationship. Parents (n = 219) who made a decision about research or treatment for a child completed measures of external influence, distress, decision-making preference, and coping. More external influence was associated with more hostility, uncertainty, and confusion. Decision-making preference and coping style moderated the relationship between external influence and distress: More external influence was associated with more distress when decision-making preference was low and task-focused coping was high. External influence appears to be related to distress in parents making research and treatment decisions for children with life-threatening illnesses. However, it is important to consider parent characteristics, such as decision-making preference and coping style, when examining the effects of contextual factors on distress during decision making.

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.

Healthcare decision-making in end stage renal disease-patient preferences and clinical correlates.

Science.gov (United States)

Jayanti, Anuradha; Neuvonen, Markus; Wearden, Alison; Morris, Julie; Foden, Philip; Brenchley, Paul; Mitra, Sandip

2015-11-14

Medical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood. 535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- 'predialysis' (group A), 'in-centre' haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses. 458 complete responses were available. API items have high internal consistency in the study population (Cronbach's alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis. ESRD patients prefer to receive information, but this does not always imply active involvement in

[Experience assisting an AIDS-infected homosexual patient and his same-sex partner make a do-not-resuscitate decision].

Science.gov (United States)

Wang, Shu-Jang; Lai, Pei-Yu; Liou, Siao-Ying; Ko, Wen-Chien; Ko, Nai-Ying

2012-10-01

Family members play an important role in the process of writing advance directives. Homosexual men infected with HIV often wish to authorize their intimate same-sex partner or friends rather than immediate family members to make medical decisions on their behalf. Although same-sex marriage is currently illegal in Taiwan, HIV infected homosexual patients are able to write advance directives appointing their same-sex partner to be their surrogate decision maker for end-of-life medical decisions. This case report describes an experience assisting a homosexual patient with HIV to write his advance directives. The nurse assisted the patient and his partner to make a self-determined decision not to resuscitate. Family conferences held to discuss the patient's decisions regarding resuscitation helped legitimize his partner's primary role in making end-of-life healthcare decisions on his behalf. As an advocate for patient rights, nurses should understand the law as it relates to homosexuality and end-of-life decision making, inform patients on the durable power of autonomy, and help execute their advance directives.

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

NARCIS (Netherlands)

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

2012-01-01

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

Decision-making in diabetes mellitus type 1.

Science.gov (United States)

Rustad, James K; Musselman, Dominique L; Skyler, Jay S; Matheson, Della; Delamater, Alan; Kenyon, Norma S; Cáceda, Ricardo; Nemeroff, Charles B

2013-01-01

Decreased treatment adherence in patients with diabetes mellitus type 1 (type 1 DM) may reflect impairments in decision-making and underlying associated deficits in working memory and executive functioning. Other factors, including comorbid major depression, may also interfere with decision-making. The authors sought to review the clinically relevant characteristics of decision-making in type 1 DM by surveying the literature on decision-making by patients with type 1 DM. Deficiencies in decision-making in patients with type 1 DM or their caregivers contribute to treatment nonadherence and poorer metabolic control. Animal models of type 1 DM reveal deficits in hippocampal-dependent memory tasks, which are reversible with insulin. Neurocognitive studies of patients with type 1 DM reveal lowered performance on ability to apply knowledge to solve problems in a new situation and acquired scholarly knowledge, psychomotor efficiency, cognitive flexibility, visual perception, speed of information-processing, and sustained attention. Other factors that might contribute to poor decision-making in patients with type 1 DM, include "hypoglycemia unawareness" and comorbid major depression (given its increased prevalence in type 1 DM). Future studies utilizing novel treatment strategies to help patients with type 1 DM make better decisions about their disease may improve their glycemic control and quality of life, while minimizing the impact of end-organ disease.

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

Science.gov (United States)

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.

Parental explicit heuristics in decision-making for children with life-threatening illnesses.

Science.gov (United States)

Renjilian, Chris B; Womer, James W; Carroll, Karen W; Kang, Tammy I; Feudtner, Chris

2013-02-01

To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions. Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children's Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed. All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice. Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.

Do neonatologists limit parental decision-making authority? A Canadian perspective.

Science.gov (United States)

Albersheim, Susan G; Lavoie, Pascal M; Keidar, Yaron D

2010-12-01

According to the principles of family-centered care, fully informed parents and health care professionals are partners in the care of sick neonates. The aim of this study was to assess the attitudes of Canadian neonatologists towards the authority of parents to make life-and-death decisions for their babies. We interviewed 121 (74%) of the 164 practicing neonatologists in Canada (June 2004-March 2005), using scripted open-ended questions and common clinical scenarios. Data analysis employed interpretive description methodology. The main outcome measure was the intention of neonatologists to limit parental life-and-death decision-making authority, when they disagree with parental decisions. Neonatologists' self-rated respect for parental decision-making authority was 8/10. Most neonatologists thought that parents should be either primary decision-makers or part of the decision-making team. Fifty-six percent of neonatologists would limit parental decision-making authority if the parents' decision is not in the baby's "best interest". In response to common neonatal severe illness scenarios, up to 18% of neonatologists said they would limit parental decision-making, even if the chance of intact survival is very poor. For clinical scenarios with equally poor long-term outcomes, neonatologists were more likely to comply with parental wishes early in the life of a baby, particularly with documented brain injury. Canadian neonatologists espouse high regard for parental decision-making authority, but are prepared to limit parental authority if the parents' decision is not thought to be in the baby's best interest. Although neonatologists advise parents that treatment can be started at birth, and stopped later, this was only for early severe brain injury. Copyright © 2010 Elsevier Ltd. All rights reserved.

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

Science.gov (United States)

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.

Interventions for promoting participation in shared decision-making for children with cancer.

LENUS (Irish Health Repository)

Coyne, Imelda

2013-01-01

Children\\'s rights to have their views heard in matters that affect their lives are now well established since the publication of the UN Convention treaty (1989). Children with cancer generally prefer to be involved in decision-making and consider it important that they have the opportunity to take part in decision-making concerning their health care, even in end-of-life decisions. There is considerable support for involving children in healthcare decision-making at a level commensurate with their experience, age and abilities. Thus healthcare professionals and parents need to know how they should involve children in decision-making and what interventions are most effective in promoting shared decision-making (SDM) for children with cancer.

THE MAKING OF DECISION MAKING

Directory of Open Access Journals (Sweden)

Leonardo Yuji Tamura

2016-04-01

Full Text Available Quantum Electronics was a Brazilian startup in the 1990's that was acquired by an American equity fund in 2012. They are currently the largest manufacturer of vehicle tracking and infotainment systems. The company was founded by three college friends, who are currently executives at the company: Camilo Santos, Pedro Barbosa and Luana Correa. Edward Hutter was sent by the equity fund to take over the company’s finances, but is having trouble making organizational decisions with his colleagues. As a consultant, I was called to help them improve their decision making process and project prioritization. I adapted and deployed our firm's methodology, but, in the end, its adequacy is shown to be very much in question. The author of this case study intends to explore how actual organizational decisions rely on different decision models and their assumptions, .as well as demonstrate that a decision model is neither absolutely good nor bad as its quality is context dependent.

Effects of Healthy Aging and Mild Cognitive Impairment on a Real-Life Decision-Making Task.

Science.gov (United States)

Pertl, Marie-Theres; Benke, Thomas; Zamarian, Laura; Delazer, Margarete

2017-01-01

In this study, we investigated the effects of age and of mild cognitive impairment (MCI) on decision making under risk by adopting a task representing real-life health-related situations and involving complex numerical information. Moreover, we assessed the relationship of real-life decision making to other cognitive functions such as number processing, executive functions, language, memory, and attention. For this reason, we compared the performance of 19 healthy, relatively younger adults with that of 18 healthy older adults and the performance of the 18 healthy older adults with that of 17 patients with MCI. Results indicated difficulties in real-life decision making for the healthy older adults compared with the healthy, relatively younger adults. Difficulties of patients with MCI relative to the healthy older adults arose in particular in difficult items requiring processing of frequencies and fractions. Significant effects of age and of MCI in processing frequencies were also evident in a ratio number comparison task. Decision-making performance of healthy participants and of the patient group correlated significantly with number processing. There was a further significant correlation with executive functions for the healthy participants and with reading comprehension for the patients. Our results suggest that healthy older individuals and patients with MCI make less advantageous decisions when the information is complex and high demands are put on executive functions and numerical abilities. Moreover, we show that executive functions and numerical abilities are not only essential in laboratory gambling tasks but also in more realistic and ecological decision situations within the health context.

[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

Real-life decision making in college students. II: Do individual differences show reliable effects?

Science.gov (United States)

Galotti, Kathleen M; Tandler, Jane M; Wiener, Hillary J D

2014-01-01

First-year undergraduates participated in a short-term longitudinal study of real-life decision making over their first 14 months of college. They were surveyed about 7 different decisions: choosing courses for upcoming terms (on 3 different occasions), choosing an academic major (twice), planning for the upcoming summer, and planning for sophomore-year housing. They also completed a survey of self-reported decision-making styles and the Need for Cognition survey (Cacioppo & Petty, 1982) to assess their focus on rationality and enjoyment of analytic thinking. Results showed few statistically significant correlations between stylistic measures and behavioral measures of decision making, in either the amount of information considered or the way in which the information integration tracked predictions of linear models of decision making applied to each participant's data. However, there were consistent correlations, across the 7 decisions, between stylistic measures and affective reactions to, or retrospective descriptions of, episodes of decision making. We suggest that decision-making styles instruments may better reflect the construction of narratives of self as a decision maker more than they do actual behavior during decision making.

Role of Advance Care Planning in Proxy Decision Making Among Individuals With Dementia and Their Family Caregivers.

Science.gov (United States)

Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni

2016-01-01

Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families. Copyright 2016, SLACK Incorporated.

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

African Journals Online (AJOL)

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

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

NARCIS (Netherlands)

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.

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

Directory of Open Access Journals (Sweden)

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.

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

Science.gov (United States)

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.

The involvement of cancer patients in the four stages of decision-making preceding continuous sedation until death: A qualitative study.

Science.gov (United States)

Robijn, Lenzo; Seymour, Jane; Deliens, Luc; Korfage, Ida; Brown, Jayne; Pype, Peter; Van Der Heide, Agnes; Chambaere, Kenneth; Rietjens, Judith

2018-04-01

Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. Qualitative case studies using interviews. Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care.

Decision-making on Population Return At the End of an Eruption

Science.gov (United States)

Woo, G.

2015-12-01

If an eruption sequence is protracted and episodic, continuing for many months, or even a number of years, it can be very difficult for authorities to decide when an evacuated population might be allowed to return. A precautionary approach may be appropriate as a general principle, especially if the societal implications are deemed to be manageable. However, where the livelihoods of the evacuees are critically at stake, such as with farmers, and the economic costs of continuing evacuation are high, a risk-informed approach to supporting decision-making might be warranted. Such an approach has been developed, based on concepts drawn from cost-benefit analysis. On any given day during an extended volcanic crisis, a decision-maker may wish to consider whether to allow then for the return of evacuees. A delay of a decision by one day will increase the evacuation cost by one day's worth of accommodation and economic disruption. On the other hand, there is a small chance that there might be an onset to another eruption on this given day, so there would be a safety benefit in the delay. The task of quantifying this safety benefit requires a coherent synthesis of all the volcano monitoring data time series, together with an assessment of the medium and long-term historical and geological data, so that the probability of each of the alternative eruptive scenarios can be scientifically estimated. Bayesian belief networks provide a convenient framework for this synthesis. For each scenario, the potential casualty implications for returned evacuees need to be assessed. The application of this end of eruption methodology is illustrated and compared with the equivalent decision-making procedure at the start of an eruption.

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

Science.gov (United States)

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

2016-02-18

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

Toward an Expanded Definition of Adaptive Decision Making.

Science.gov (United States)

Phillips, Susan D.

1997-01-01

Uses the lifespan, life-space model to examine the definition of adaptive decision making. Reviews the existing definition of adaptive decision making as "rational" decision making and offers alternate perspectives on decision making with an emphasis on the implications of using the model. Makes suggestions for future theory, research,…

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

Science.gov (United States)

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.

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

Science.gov (United States)

2012-01-01

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

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

NARCIS (Netherlands)

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

2012-01-01

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

An expandable software model for collaborative decision making during the whole building life cycle

International Nuclear Information System (INIS)

Papamichael, K.; Pal, V.; Bourassa, N.; Loffeld, J.; Capeluto, G.

2000-01-01

Decisions throughout the life cycle of a building, from design through construction and commissioning to operation and demolition, require the involvement of multiple interested parties (e.g., architects, engineers, owners, occupants and facility managers). The performance of alternative designs and courses of action must be assessed with respect to multiple performance criteria, such as comfort, aesthetics, energy, cost and environmental impact. Several stand-alone computer tools are currently available that address specific performance issues during various stages of a building's life cycle. Some of these tools support collaboration by providing means for synchronous and asynchronous communications, performance simulations, and monitoring of a variety of performance parameters involved in decisions about a building during building operation. However, these tools are not linked in any way, so significant work is required to maintain and distribute information to all parties. In this paper we describe a software model that provides the data management and process control required for collaborative decision making throughout a building's life cycle. The requirements for the model are delineated addressing data and process needs for decision making at different stages of a building's life cycle. The software model meets these requirements and allows addition of any number of processes and support databases over time. What makes the model infinitely expandable is that it is a very generic conceptualization (or abstraction) of processes as relations among data. The software model supports multiple concurrent users, and facilitates discussion and debate leading to decision making. The software allows users to define rules and functions for automating tasks and alerting all participants to issues that need attention. It supports management of simulated as well as real data and continuously generates information useful for improving performance prediction and

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

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

Science.gov (United States)

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

STRATEGIC DECISION MAKING, ENTREPRENEURIAL ORIENTATION AND PERFORMANCE: AN ORGANIZATIONAL LIFE CYCLE APPROACH

Directory of Open Access Journals (Sweden)

Héctor Montiel Campos

2015-06-01

Full Text Available EntrepreneurialOrientation (EO and Strategic Decision Making (SDM have been studied in awide variety of settings. However, there is not enough research available thatcombines both topics and studies the ways in which entrepreneurs make strategicdecisions in early stages of organizational life cycle. The purpose of thisresearch was therefore to examine the effects of the factors associated withthe decision maker influencing EO and performance for two categories of firms.The results were achieved by using empirical data from two independent samplesof firms in different stages of organizational life cycle: start-up stage (n=133 and growth stage (n=173. The results show that SDM andcontrol variables have different effects in the two samples; however, for bothsamples there is significant relation between EO and performance. The paperconcludes with a discussion about the results and suggestions for futureresearch.

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.

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

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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

Dialogic Consensus In Clinical Decision-Making.

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Walker, Paul; Lovat, Terry

2016-12-01

This paper is predicated on the understanding that clinical encounters between clinicians and patients should be seen primarily as inter-relations among persons and, as such, are necessarily moral encounters. It aims to relocate the discussion to be had in challenging medical decision-making situations, including, for example, as the end of life comes into view, onto a more robust moral philosophical footing than is currently commonplace. In our contemporary era, those making moral decisions must be cognizant of the existence of perspectives other than their own, and be attuned to the demands of inter-subjectivity. Applicable to clinical practice, we propose and justify a Habermasian approach as one useful means of achieving what can be described as dialogic consensus. The Habermasian approach builds around, first, his discourse theory of morality as universalizable to all and, second, communicative action as a cooperative search for truth. It is a concrete way to ground the discourse which must be held in complex medical decision-making situations, in its actual reality. Considerations about the theoretical underpinnings of the application of dialogic consensus to clinical practice, and potential difficulties, are explored.

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

Directory of Open Access Journals (Sweden)

Blanker Marco H

2012-07-01

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

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.

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

Science.gov (United States)

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

Like cognitive function, decision making across the life span shows profound age-related changes.

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Tymula, Agnieszka; Rosenberg Belmaker, Lior A; Ruderman, Lital; Glimcher, Paul W; Levy, Ifat

2013-10-15

It has long been known that human cognitive function improves through young adulthood and then declines across the later life span. Here we examined how decision-making function changes across the life span by measuring risk and ambiguity attitudes in the gain and loss domains, as well as choice consistency, in an urban cohort ranging in age from 12 to 90 y. We identified several important age-related patterns in decision making under uncertainty: First, we found that healthy elders between the ages of 65 and 90 were strikingly inconsistent in their choices compared with younger subjects. Just as elders show profound declines in cognitive function, they also show profound declines in choice rationality compared with their younger peers. Second, we found that the widely documented phenomenon of ambiguity aversion is specific to the gain domain and does not occur in the loss domain, except for a slight effect in older adults. Finally, extending an earlier report by our group, we found that risk attitudes across the life span show an inverted U-shaped function; both elders and adolescents are more risk-averse than their midlife counterparts. Taken together, these characterizations of decision-making function across the life span in this urban cohort strengthen the conclusions of previous reports suggesting a profound impact of aging on cognitive function in this domain.

Toward a Psychology of Surrogate Decision Making.

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Tunney, Richard J; Ziegler, Fenja V

2015-11-01

In everyday life, many of the decisions that we make are made on behalf of other people. A growing body of research suggests that we often, but not always, make different decisions on behalf of other people than the other person would choose. This is problematic in the practical case of legally designated surrogate decision makers, who may not meet the substituted judgment standard. Here, we review evidence from studies of surrogate decision making and examine the extent to which surrogate decision making accurately predicts the recipient's wishes, or if it is an incomplete or distorted application of the surrogate's own decision-making processes. We find no existing domain-general model of surrogate decision making. We propose a framework by which surrogate decision making can be assessed and a novel domain-general theory as a unifying explanatory concept for surrogate decisions. © The Author(s) 2015.

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

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Mendoza, Roger Lee

2017-09-01

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

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.

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

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

2013-08-01

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

Confronting evidence: individualised care and the case for shared decision-making.

LENUS (Irish Health Repository)

Ryan, P

2014-11-01

In many clinical scenarios there exists more than one clinically appropriate intervention strategy. When these involve subjective trade-offs between potential benefits and harms, patients\\' preferences should inform decision-making. Shared decision-making is a collaborative process, where clinician and patient reconcile the best available evidence with respect for patients\\' individualized care preferences. In practice, clinicians may be poorly equipped to participate in this process. Shared decision-making is applicable to many conditions including stable coronary artery disease, end-of-life care, and numerous small decisions in chronic disease management. There is evidence of more clinically appropriate care patterns, improved patient understanding and sense of empowerment. Many trials reported a 20% reduction in major surgery in favour of conservative treatment, although demand tends to increase for some interventions. The generalizability of international evidence to Ireland is unclear. Considering the potential benefits, there is a case for implementing and evaluating shared decision-making pilot projects in Ireland.

Health Care Professional Factors Influencing Shared Medical Decision Making in Korea

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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.

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.

A matter of life and death: controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness.

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Turner-Stokes, Lynne

2017-07-01

Best interests decision-making and end-of-life care for patients in permanent vegetative or minimally conscious states (VS/MCS) is a complex area of clinical and legal practice, which is poorly understood by most clinicians, lawyers and members of the public. In recent weeks, the Oxford Shrieval lecture by Mr Justice Baker ('A Matter of Life and Death', 11 October 2016) and its subsequent reporting in the public press has sparked debate on the respective roles of clinicians, the Court of Protection and the Mental Capacity Act 2005 in decisions to withhold or withdraw life-sustaining treatments from patients with disorders of consciousness. The debate became polarised and confused by misquotation and inaccurate terminology, and highlighted a lack of knowledge about how patients in VS/MCS die in the absence of court approval. This article sets out the background and discussion and attempts to give a more accurate representation of the facts. In the spirit of transparency, I present a mortality review of all the patients in VS/MCS who have died under the care of my own unit in the last decade-with or without referral to the court, but always in accordance with the law. These data demonstrate that clinicians regularly undertake best interests decision-making in conjunction with families that may include life and death decisions (sometimes even the withdrawal or withholding of clinically assisted nutrition and hydration); and that these can be made within the current legal framework without necessarily involving the court in all cases. This is the first published case series of its kind. 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/.

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care.

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Carroll, Karen W; Mollen, Cynthia J; Aldridge, Sarah; Hexem, Kari R; Feudtner, Chris

2012-01-01

Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on "decision making for your child"; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews. Four dominant interrelated themes permeated parents' discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents' effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child's best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments. Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.

Life and Death Decision Making, by Baruch A. Brody.

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Veatch, Robert M

1989-04-01

Veatch considers the pluralistic casuistry theory advocated by Baruch Brody in his 1988 book, Life and Death Decision Making, to be an important contribution to the secular medical ethics literature. The casuistic and pluralistic elements of Brody's new model are described as intriguing but controversial because Brody both excludes several ethical appeals (i.e., classical Hippocratic ethics, virtue theory) and/or limits other questionable appeals (i.e., consequences for families and others in society, the virtue of integrity) without accounting for these decisions. Veatch also questions Brody's use of intuitional judgment to determine what ought to be done after examination of various appeals and their significance because Brody's approach raises serious problems about how various appeals are counted. Veatch does affirm the rich assessment of medical ethical problems made possible by Brody's pluralistic approach but notes the difficulties it raises.

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

Science.gov (United States)

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.

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.

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.

What is a “good” treatment decision?: Decisional control, knowledge, treatment decision-making, and quality of life in men with clinically localized prostate cancer

Science.gov (United States)

Orom, Heather; Biddle, Caitlin; Underwood, Willie; Nelson, Christian J.; Homish, D. Lynn

2016-01-01

Objective We explored whether active patient involvement in decision making and greater patient knowledge are associated with better treatment decision making experiences and better quality of life (QOL) among men with clinically localized prostate cancer. Localized prostate cancer treatment decision-making is an advantageous model for studying patient treatment decision-making dynamics as there are multiple treatment options and a lack of empirical evidence to recommend one over the other; consequently, it is recommended that patients be fully involved in making the decision. Methods Men with newly diagnosed clinically localized prostate cancer (N=1529) completed measures of decisional control, prostate cancer knowledge, and their decision-making experience (decisional conflict, and decision-making satisfaction and difficulty) shortly after they made their treatment decision. Prostate cancer-specific QOL was assessed 6-months after treatment. Results More active involvement in decision making and greater knowledge were associated with lower decisional conflict and higher decision-making satisfaction, but greater decision-making difficulty. An interaction between decisional control and knowledge revealed that greater knowledge was only associated with greater difficulty for men actively involved in making the decision (67% of sample). Greater knowledge, but not decisional control predicted better QOL 6-months post-treatment. Conclusion Although men who are actively involved in decision making and more knowledgeable may make more informed decisions, they could benefit from decisional support (e.g., decision-making aids, emotional support from providers, strategies for reducing emotional distress) to make the process easier. Men who were more knowledgeable about prostate cancer and treatment side effects at the time they made their treatment decision may have appraised their QOL as higher because they had realistic expectations about side effects. PMID:26957566

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

Decision making across the life span

NARCIS (Netherlands)

Li, S.C.; Ridderinkhof, K.R.; Samanez-Larkin, G.R.

2014-01-01

Learning to choose adaptively between different behavioral options in order to reach goals is a pervasive task in life for people of all ages. Individuals are often confronted with complex, uncertain situations that nonetheless require decisive actions that would facilitate the pursuit of short-term

[Conscience clause in end-of-life care.

Science.gov (United States)

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.

Potential of life cycle assessment to support environmental decision making at commercial dairy farms

NARCIS (Netherlands)

Meul, M.; Middelaar, van C.E.; Boer, de I.J.M.; Passel, van S.; Fremaut, D.; Haesaert, G.

2014-01-01

In this paper, we evaluate the potential of life cycle assessment (LCA) to support environmental decision making at commercial dairy farms. To achieve this, we follow a four-step method that allows converting environmental assessment results using LCA into case-specific advice for farmers. This is

Making the case for talking to patients about the costs of end-of-life care.

Science.gov (United States)

Donley, Greer; Danis, Marion

2011-01-01

Costs at the end of life disproportionately contribute to health care costs in the United States. Addressing these costs will therefore be an important component in making the U.S. health care system more financially sustainable. In this paper, we explore the moral justifications for having discussions of end-of-life costs in the doctor-patient encounter as part of an effort to control costs. As health care costs are partly shared through pooled resources, such as insurance and taxation, and partly borne by individuals through out-of-pocket expenses, we separate our defense for, and approach to, discussing both pooled and individual aspects of cost. We argue that there needs to be a shift away from formulating the options as a dichotomous choice of paying attention to end-of-life costs versus ignoring such costs. The question should be how personal costs will be managed and how societal expenditures should be allocated. These are issues that we believe patients care about and need to have addressed in a manner with which they are comfortable. Conversations about how money will be spent at the end of life should begin before the end is near. We propose discussing costs from the onset of chronic illness and incorporating financial issues in advance care planning. Through these approaches one can avoid abruptly and insensitively introducing financial issues at the very conclusion of a person's life when one would prefer to address the painful and important issues of spiritual and existential loss that are appropriately the focus when a person is dying. © 2011 American Society of Law, Medicine & Ethics, Inc.

Decision making model and behavior of Iranian top managers

Directory of Open Access Journals (Sweden)

Aliakbar Farhangi

2010-01-01

Full Text Available Aesthetics relates to felt meaning generated from sensory perceptions, and involves subjective,tacit knowledge rooted in feeling and emotion. We believe the aesthetics of management isimportant, but little understood, aspect of organizational life. We propose that followers use theiraesthetic senses in making these assessments.In this article we try to discover the role of aesthetic in management and then try to find out thestyle of about 130 industrial and governmental top managers in Iran using some technique such asquestionnaire and interview. The personality and character of them will be recognized by some testsuch as KAI, MBIT, CPS, Cooper-Smith self-esteem, management style, machiavellism, internaland external control, behavior, attitude and their methods in problem solving and decision making,and the effect of this ability in productivity of their organization.At the end of this study we find out that they are strongly thinking, judging and intuition but half ofthem are extraversion. their personality & character, attitude, skills, professions, perception are soimportant for management and in making a decision more than Two-thirds:-If they make a decision never change it.-Use their aesthetic to judge others and events or found out the right way if it is rational and there isenough evidence.-Uses his experience and knowledge for decision but asks others to suggest a solution or solve theproblem.

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

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

2012-03-01

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

Assessment of decisions in the context of life attitudes

Directory of Open Access Journals (Sweden)

Klamut Ryszard

2012-01-01

Full Text Available Presented article attempts to show sense of life perspective as a determinant of decision making. It is assumed that the sense of life perspective described as life attitudes is significant in assessment of decision problem defined in the predecision phase of the decision making process. The predicted dependence was analysed in three categories of decision: self-development, financial and voting. The research was conducted on two groups of 186 and 86 participants. Two methods were used in the research: the Life Attitude Profile -Revised (LAP-R and the Decision Assessment Questionnaire. In statistical analysis, the canonical correlation analysis was used. The scores show that the life attitudes (especially: Purpose, Coherence, Life Control and Existential Vacuum are correlated with the assessment factor (especially: Cognitive Analysis and Affective Assessment of each tested category of decision. However, the most significant relationship is found in the self-development decision.

[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.

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.

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.

The legal guardians' dilemma: Decision making associated with invasive non-life-saving procedures

Science.gov (United States)

2012-01-01

Background ICU patients frequently undergo non-life-saving invasive procedures. When patient informed consent cannot be obtained, legal guardianship (LG), often from a close relative, may be required by law. The objective of this cohort study was to investigate the attitudes of LGs of ICU patients regarding the process of decision making for invasive non-life-saving procedures. Methods The study was conducted from May 2009 until June 2010 in general medical/surgical ICUs in two large Israeli medical centers. All 64 LGs who met the study criteria agreed to participate in the study. Three questionnaires were administered: a demographic data questionnaire, the Family Satisfaction with ICU 34 Questionnaire, and the Attitudes towards the LG Decision Making Process questionnaire, developed by the authors. Results The sample consisted of 64 LGs. Most participants were married (n = 56, 87.5%), male (n = 33, 51.6%), who had either a high school (n = 24, 37.5%) or college (n = 19, 29.7%) education, and were at a mean age of 49.2 (±11.22). Almost all of the procedures performed were tracheotomies (n = 63, 98.4%). About two-thirds of the LGs preferred decisions to be made by the medical staff after discussing options with them (n = 42, 65.6%) and about three-fifths stated that decisions could be made without the need for the appointment of an LG (n = 37, 57.8%). Attitudes towards ease of obtaining information and honesty of information were more positive compared to those of consistency and understanding of information. Conclusions The legal guardianship process requires better communication and more understandable information in order to assist LGs in making decisions for others in at times vague and stressful situations. PMID:23006738

Patient involvement in the decision-making process improves satisfaction and quality of life in postmastectomy breast reconstruction.

Science.gov (United States)

Ashraf, Azra A; Colakoglu, Salih; Nguyen, John T; Anastasopulos, Alexandra J; Ibrahim, Ahmed M S; Yueh, Janet H; Lin, Samuel J; Tobias, Adam M; Lee, Bernard T

2013-09-01

The patient-physician relationship has evolved from the paternalistic, physician-dominant model to the shared-decision-making and informed-consumerist model. The level of patient involvement in this decision-making process can potentially influence patient satisfaction and quality of life. In this study, patient-physician decision models are evaluated in patients undergoing postmastectomy breast reconstruction. All women who underwent breast reconstruction at an academic hospital from 1999-2007 were identified. Patients meeting inclusion criteria were mailed questionnaires at a minimum of 1 y postoperatively with questions about decision making, satisfaction, and quality of life. There were 707 women eligible for our study and 465 completed surveys (68% response rate). Patients were divided into one of three groups: paternalistic (n = 18), informed-consumerist (n = 307), shared (n = 140). There were differences in overall general satisfaction (P = 0.034), specifically comparing the informed group to the paternalistic group (66.7% versus 38.9%, P = 0.020) and the shared to the paternalistic group (69.3% versus 38.9%, P = 0.016). There were no differences in aesthetic satisfaction. There were differences found in the SF-12 physical component summary score across all groups (P = 0.033), and a difference was found between the informed and paternalistic groups (P mental component score (P = 0.42). Women undergoing breast reconstruction predominantly used the informed model of decision making. Patients who adopted a more active role, whether using an informed or shared approach, had higher general patient satisfaction and physical component summary scores compared with patients whose decision making was paternalistic. Copyright © 2013 Elsevier Inc. All rights reserved.

Day-to-day care in palliative sedation: Survey of nurses' experiences with decision-making and performance

NARCIS (Netherlands)

Arevalo, J.J.; Rietjens, J.A.; Swart, S.J.; Perez, R.S.G.M.; van der Heide, A.

2013-01-01

Context: Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of

Hardships of end-of-life care with court-appointed guardians.

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Hastings, Kylie B

2014-02-01

In the United States, the court-appointed guardians do not have the ability to make decisions regarding end-of-life (EOL) care for their clients. Additionally, the process of initiating EOL care measures can be slow and cumbersome, despite an existing process of getting approval for such care. This process has the potential to prolong suffering and delay imperative decisions. This article reviews the hardships that patients, court-appointed guardians, and health care staff endure while moving through the oppressive process of obtaining EOL care orders through the court. This article also proposes ways of tuning up the laws, regulations, and communications to make it easier and faster to obtain orders regarding EOL care to preserve the dignity of our patients and loved ones. "A guardianship is a legal relationship created when a person or institution named in a will or assigned by the court to take care of minor children or incompetent adults."

Toward a psychology of surrogate decision-making

OpenAIRE

Tunney, Richard J.; Ziegler, Fenja

2016-01-01

Many of the decisions that we make in everyday life are made for the benefit of other people. However, research suggests that people often make decisions on behalf of other people that are different from those that the other person would choose for himself or herself. This raises practical problems in the case of legally designated surrogate decision-makers who may not meet the legal normative benchmark — the substituted judgment standard. We review evidence from our own ...

Customer Decision Support Systems: Resources for Student Decision Making

Directory of Open Access Journals (Sweden)

Cara Okleshen Peters, Ph.D.

2005-07-01

Full Text Available This paper highlights the potential of customer decision support systems (CDSS to assist students in education-related decision making. Faculty can use these resources to more effectively advise students on various elements of college life, while students can employ them to more actively participate in their own learning and improve their academic experience. This conceptual paper summarizes consumer decision support systems (CDSS concepts and presents exemplar websites students could utilize to support their education-related decision making. Finally, the authors discuss the potential benefits and drawbacks such resources engender from a student perspective and conclude with directions for future research.

Life's end: Ethnographic perspectives.

Science.gov (United States)

Goodwin-Hawkins, Bryonny; Dawson, Andrew

2018-01-01

In this introduction to the special issue, Life's End: Ethnographic Perspectives, we review the field of anthropological studies of death and dying. We make the argument that, largely because of its sub-disciplining into the larger field of the anthropology of religion, ritual and symbolism, the focus of anthropological research on death has been predominantly on post- rather than pre-death events, on death's beginnings rather than life's ends. Additionally, we argue that an anthropological aversion to the study of dying may also lie in the intimacy of the discipline's principal method, ethnography. Contrastingly, we argue that this very methodological intimacy can be a source of insight, and we offer this as a rationale for the special issue as a whole, which comprises eight ethnographic studies of dying and social relations at life's end from across Africa, Australia, Europe, and North America. Each of these studies is then summarized, and a rationale for their presentation around the themes of "structures of dying," "care for the dying," "hope in dying," and "ending life" is presented.

Economic modelling for life extension decision making

International Nuclear Information System (INIS)

Farber, M.A.; Harrison, D.L.; Carlson, D.D.

1987-01-01

This paper presents a methodology for the economic and financial analysis of nuclear plant life extension under uncertainty and demonstrates its use in a case analysis. While the economic and financial evaluation of life extension does not require new analytical tools, such studies should be based on the following three premises. First, the methodology should examine effects at the level of the company or utility system, because the most important economic implications of life extension relate to the altered generation system expansion plan. Second, it should focus on the implications of uncertainty in order to understand the factors that most affect life extension benefits and identify risk management efforts. Third, the methodology should address multiple objectives, at a minimum, both economic and financial objectives. An analysis of the role of life extension for Virginia Power's generating system was performed using the MIDAS model, developed by the Electric Power Research Institute. MIDAS is particularly well suited to this type of study because of its decision analysis framework. The model incorporates modules for load analysis, capacity expansion, production costing, financial analysis, and rates. The decision tree structure facilitates the multiple-scenario analysis of uncertainty. The model's output includes many economic and financial measures, including capital expenditures, fuel and purchases power costs, revenue requirements, average rates, external financing requirements, and coverage ratio. Based on findings for Virginia Power's Surry 1 plant, nuclear plant life extension has economic benefits for a utility's customers and financial benefits for the utility's investors. These benefits depend on a number of economic, technical and regulatory factors. The economic analysis presented in this paper identifies many of the key factors and issues relevant to life extension planning

Encompassing the Work-Life Balance into Early Career Decision-Making of Future Employees Through the Analytic Hierarchy Process

OpenAIRE

Gawlik, Remigiusz

2016-01-01

The paper presents the results of ranking of the significance of quality of life determinants by University students that are starting professional activities. Research methodology: literature review; elaboration of an AHP decision-making model; two-stage expert selection; significance rankings by experts and a graphical and descriptive presentation of obtained results. Research sample: 14 experts out of almost 200 University students. Research outcome: a decision-making model that aims at ma...

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

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Xafis, Vicki; Watkins, Andrew; Wilkinson, Dominic

2016-04-01

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

Decision or no decision: how do patient-physician interactions end and what matters?

Science.gov (United States)

Tai-Seale, Ming; Bramson, Rachel; Bao, Xiaoming

2007-03-01

A clearly stated clinical decision can induce a cognitive closure in patients and is an important investment in the end of patient-physician communications. Little is known about how often explicit decisions are made in primary care visits. To use an innovative videotape analysis approach to assess physicians' propensity to state decisions explicitly, and to examine the factors influencing decision patterns. We coded topics discussed in 395 videotapes of primary care visits, noting the number of instances and the length of discussions on each topic, and how discussions ended. A regression analysis tested the relationship between explicit decisions and visit factors such as the nature of topics under discussion, instances of discussion, the amount of time the patient spoke, and competing demands from other topics. About 77% of topics ended with explicit decisions. Patients spoke for an average of 58 seconds total per topic. Patients spoke more during topics that ended with an explicit decision, (67 seconds), compared with 36 seconds otherwise. The number of instances of a topic was associated with higher odds of having an explicit decision (OR = 1.73, p decisions. Although discussions often ended with explicit decisions, there were variations related to the content and dynamics of interactions. We recommend strengthening patients' voice and developing clinical tools, e.g., an "exit prescription," to improving decision making.

End-of-Discharge and End-of-Life Prediction in Lithium-Ion Batteries with Electrochemistry-Based Aging Models

Science.gov (United States)

Daigle, Matthew; Kulkarni, Chetan S.

2016-01-01

As batteries become increasingly prevalent in complex systems such as aircraft and electric cars, monitoring and predicting battery state of charge and state of health becomes critical. In order to accurately predict the remaining battery power to support system operations for informed operational decision-making, age-dependent changes in dynamics must be accounted for. Using an electrochemistry-based model, we investigate how key parameters of the battery change as aging occurs, and develop models to describe aging through these key parameters. Using these models, we demonstrate how we can (i) accurately predict end-of-discharge for aged batteries, and (ii) predict the end-of-life of a battery as a function of anticipated usage. The approach is validated through an experimental set of randomized discharge profiles.

Geospatial decision support systems for societal decision making

Science.gov (United States)

Bernknopf, R.L.

2005-01-01

While science provides reliable information to describe and understand the earth and its natural processes, it can contribute more. There are many important societal issues in which scientific information can play a critical role. Science can add greatly to policy and management decisions to minimize loss of life and property from natural and man-made disasters, to manage water, biological, energy, and mineral resources, and in general, to enhance and protect our quality of life. However, the link between science and decision-making is often complicated and imperfect. Technical language and methods surround scientific research and the dissemination of its results. Scientific investigations often are conducted under different conditions, with different spatial boundaries, and in different timeframes than those needed to support specific policy and societal decisions. Uncertainty is not uniformly reported in scientific investigations. If society does not know that data exist, what the data mean, where to use the data, or how to include uncertainty when a decision has to be made, then science gets left out -or misused- in a decision making process. This paper is about using Geospatial Decision Support Systems (GDSS) for quantitative policy analysis. Integrated natural -social science methods and tools in a Geographic Information System that respond to decision-making needs can be used to close the gap between science and society. The GDSS has been developed so that nonscientists can pose "what if" scenarios to evaluate hypothetical outcomes of policy and management choices. In this approach decision makers can evaluate the financial and geographic distribution of potential policy options and their societal implications. Actions, based on scientific information, can be taken to mitigate hazards, protect our air and water quality, preserve the planet's biodiversity, promote balanced land use planning, and judiciously exploit natural resources. Applications using the

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

Science.gov (United States)

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.

'My kidneys, my choice, decision aid': supporting shared decision making.

Science.gov (United States)

Fortnum, Debbie; Smolonogov, Tatiana; Walker, Rachael; Kairaitis, Luke; Pugh, Debbie

2015-06-01

For patients with chronic kidney disease (CKD) who are progressing to end-stage kidney disease (ESKD) a decision of whether to undertake dialysis or conservative care is a critical component of the patient journey. Shared decision making for complex decisions such as this could be enhanced by a decision aid, a practice which is well utilised in other disciplines but limited for nephrology. A multidisciplinary team in Australia and New Zealand (ANZ) utilised current decision-making theory and best practice to develop the 'My Kidneys, My Choice', a decision aid for the treatment of kidney disease. A patient-centred, five-sectioned tool is now complete and freely available to all ANZ units to support the ESKD education and shared decision-making process. Distribution and education have occurred across ANZ and evaluation of the decision aid in practice is in the first phase. Development of a new tool such as an ESKD decision aid requires vision, multidisciplinary input and ongoing implementation resources. This tool is being integrated into ANZ, ESKD education practice and is promoting the philosophy of shared decision making. © 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Case Study Application of Determining End of Physical Life Using Survival Analysis (WERF Report INFR2R11b)

Science.gov (United States)

Abstract: This case study application provides discussion on a selected application of advanced concepts, included in the End of Asset Life Reinvestment decision-making process tool, using Milwaukee Metropolitan Sewer District (MMSD) pump and motor data sets. The tool provides s...

Naturalistic decision making in forensic science: toward a better understanding of decision making by forensic team leaders.

Science.gov (United States)

Helsloot, Ira; Groenendaal, Jelle

2011-07-01

This study uses the naturalistic decision-making (NDM) perspective to examine how Dutch forensic team leaders (i.e., the officers in charge of criminal forensic research from the crime scene until the use of laboratory assistance) make decisions in real-life settings and identifies the contextual factors that might influence those decisions. First, a focus group interview was conducted to identify four NDM mechanisms in day-to-day forensic decision making. Second, a serious game was conducted to examine the influence of three of these contextual mechanisms. The results uncovered that forensic team leaders (i) were attracted to obtain further information when more information was initially made available, (ii) were likely to devote more attention to emotionally charged cases, and (iii) used not only forensic evidence in the decision making but also tactical, unverified information of the police inquiry. Interestingly, the measured contextual influences did not deviate significantly from a control group of laypeople. © 2011 American Academy of Forensic Sciences.

Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty.

Science.gov (United States)

Birchley, Giles; Jones, Kerry; Huxtable, Richard; Dixon, Jeremy; Kitzinger, Jenny; Clare, Linda

2016-07-27

In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we conducted a scoping review and thematic synthesis. To capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature. Initial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as 'natural' and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making (in all its forms), its influence on policy and decision-making, and some caveats that arise from the studies. Together these three themes indicate a number of directions for future research, which are likely to be

Assessing the Decision-Making Capacity of Terminally Ill Patients with Cancer.

Science.gov (United States)

Kolva, Elissa; Rosenfeld, Barry; Saracino, Rebecca

2018-05-01

Despite the clinical, ethical, and legal magnitude of end-of-life decision-making, the capacity of terminally ill patients to make the medical decisions they often face is largely unknown. In practice, clinicians are responsible for determining when their patients are no longer competent to make treatment decisions, yet the accuracy of these assessments is unclear. The purpose of this study was to explore decision-making capacity and its assessment in terminally ill cancer patients. Fifty-five patients with advanced cancer receiving inpatient palliative care and 50 healthy adults were administered the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) to evaluate decision-making capacity with regard to the four most commonly used legal standards: Choice, Understanding, Appreciation, and Reasoning. Participants made a hypothetical treatment decision about whether to accept artificial nutrition and hydration for treatment of cachexia. Participants' physicians independently rated their decision-making capacity. Terminally ill participants were significantly more impaired than healthy adults on all MacCAT-T subscales. Most terminally ill participants were able to express a treatment choice (85.7%), but impairment was common on the Understanding (44.2%), Appreciation (49.0%), and Reasoning (85.4%) subscales. Agreement between physician-rated capacity and performance on the MacCAT-T subscales was poor. The use of the MacCAT-T revealed high rates of decisional impairment in terminally ill participants. Participants' physicians infrequently detected impairment identified by the MacCAT-T. The findings from the present study reinforce the need for engagement in advance care planning for patients with advanced cancer. Copyright © 2018 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

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

Science.gov (United States)

Baker, Francis X; Gallagher, Colleen M

2017-10-01

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