ABSTRACTThis 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. (shrink)

Objectives: To discover the current state of opinion and practice among doctors in Victoria, Australia, regarding end-of-life decisions and the legalisation of voluntary euthanasia. Longitudinal comparison with similar 1987 and 1993 studies.Design and participants: Cross-sectional postal survey of doctors in Victoria.Results: 53% of doctors in Victoria support the legalisation of voluntary euthanasia. Of doctors who have experienced requests from patients to hasten death, 35% have administered drugs with the intention of hastening death. There is substantial disagreement among doctors (...) concerning the definition of euthanasia.Conclusions: Disagreement among doctors concerning the meaning of the term euthanasia may contribute to misunderstanding in the debate over voluntary euthanasia. Among doctors in Victoria, support for the legalisation of voluntary euthanasia appears to have weakened slightly over the past 17 years. Opinion on this issue is sharply polarised. (shrink)

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of (...) this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia. (shrink)

With disagreement, doubts, or ambiguous grounds in end–of-life decisions, doctors are advised to involve a clinical ethics committee. 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. (shrink)

Healthcare professionals working in intensive care units are often involved in end-of-life decision-making. No research has been done so far about these processes taking place in Croatian ICUs. The aim of this study was to investigate the perceptions, experiences, and challenges healthcare professionals face when dealing with end-of-life decisions in ICUs in Croatia. A qualitative study was performed using professionally homogenous focus groups of ICU nurses and physicians of diverse professional and clinical backgrounds at three research sites. (...) In total, six institutions at the tertiary level of healthcare were included. The constant comparative analysis method was used in the analysis of the data. Differences were found between the perceptions and experiences of nurses and physicians in relation to end-of-life decisions. Nurses’ perceptions were more focused on the context and features of immediate care, while physicians’ perceptions also included the wider sociocultural context. However, the critical issues these specific professional groups face when dealing with end-of-life decisions seem to overlap. A high variability of practices, both between individual practitioners and between different organizational units, was omnipresent. The lack of adequate legal, professional, and clinical guidelines was commonly expressed as one of the most critical source of difficulties. (shrink)

Those involved in end-of-life decision making must take into account both legal and ethical issues. This book starts with a critical reflection of ethical principles including ideas such as moral status, the value of life, acts and omissions, harm, autonomy, dignity and paternalism. It then explores the practical difficulties of regulating end-of-life decisions, focusing on patients, healthcare professionals, the wider community and issues surrounding 'slippery slope' arguments. By evaluating the available empirical evidence, the author identifies preferred (...) ways to regulate decisions and minimise abuses at the end of life, and outlines an ethical theory which can provide practical guidance for those engaged in end-of-life decisions"--Provided by publisher. (shrink)

Background: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses’ attitudes and involvement in end-of-life decisions are available. Research question/aim: To investigate neonatal nurses’ attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. Research design: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. (...) Participants and research context: The questionnaire was answered anonymously by 312 nurses (response rate, 71.1%) and returned to the investigators. Ethical considerations: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. Findings: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses’ religiousness ( p = 0.097), parenthood ( p = 0.093), involvement in daily practice ( p = 0.03), and position on the existing legal framework ( p < 0.002) influenced their attitude score. Discussion: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses’ attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. Conclusion: Variability in involvement in end-of-life decisions among nurses exists on a national level. (shrink)

There has been increasing awareness of the medical and moral challenges in the care of unrepresented patients: those who cannot make their own medical decisions, do not have any surrogate decision maker, and have not indicated their treatment preferences. Most discussions have focused on procedural questions such as who should make decisions for these patients. An issue that has not gotten enough attention is the ethical standard that should govern medical decision making. I explore the question of which (...) ethical standard provides better justification for end-of-life decisions for unrepresented patients. Two options are considered: the conventional and less demanding best interest standard, and the novel and more demanding medical futility standard. I explain the similarities and differences between these two standards, examine arguments for and against each one, and suggest that the medical futility standard is ethically superior and should replace the established best interest standard. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making (...) in pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Objective To assess whether the frequency of end-of-life decisions for children under 1 year of age in the Netherlands has changed since ultrasound examination around 20 weeks of gestation became routine in 2007 and after a legal provision for deliberately ending the life of a newborn was set up that same year. Methodology This was a recurrent nationwide cross-sectional study in the Netherlands. In 2010, a sample of death certificates from children under 1 year of age was (...) derived from the central death registry. All 223 deaths that occurred in a 4-month study period were included. Physicians who had reported a non-sudden death (n=206) were sent a questionnaire on the end-of-life decisions made. 160 questionnaires were returned (response 78%). Findings In 2010, 63% of all deaths of children under 1 year of age were preceded by an end-of-life decision—a percentage comparable to other times when this study was conducted (1995, 2001, 2005). These end-of-life decisions were mainly decisions to withdraw or withhold potentially life-sustaining treatment. In 2010, the percentage of cases in which drugs were administered with the explicit intention to hasten death was 1%, while in 1995 and 2001, this was 9% and in 2005, this was 8%. Discussion and conclusion There has been a reduction of infant deaths that followed administration of drugs with the explicit intention to hasten death. One explanation for this reduction relates to the introduction of routine ultrasound examination around 20 weeks of gestation. In addition, the introduction of legal criteria and a review process for deliberately ending the life of a newborn may have left Dutch physicians with less room to hasten death. (shrink)

The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the (...) right of free choice entail allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (shrink)

The doctrine of double effect has a firm, respected position within Roman Catholic medical ethics. In addition, public debate often incorporates this doctrine when determining the acceptability of certain actions. This essay examines and assesses the application of this doctrine to end-of-life decisions. National Catholic Bioethics Quarterly 11.1 (Spring 2011): 99–119.

Norwegian health professionals, elderly people and family members experience ethical problems involving end-of-life decision making for elders in the context of the values of Norwegian society. This study used ethical inquiry and qualitative methodology to conduct and analyze interviews carried out with 25 health professionals, six elderly people and five family members about the ethical problems they encountered in end-of-life decision making in Norway. All three participant groups experienced ethical problems involving the adequacy of health care for elderly (...) Norwegians. Older people were concerned about being a burden to their families at the end of their life. However, health professionals wished to protect families from the burden of difficult decisions regarding health care for elderly parents at the end of life. Strategies are suggested for dialogue about end-of-life decisions and the integration of palliative care approaches into health care services for frail elderly people. (shrink)

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

This article will explore some previously unrecognised legal and ethical issues associated with informal care-giving and criminal justice in the context of end of life decision-making. It was prompted by a recent case in Leeds Crown Court, which raises important issues for the people who care for their loved ones at home and for the criminal justice system more generally. Government figures estimate that over 5.2 million Britons are responsible for the care of relatives or loved ones. In order (...) to evaluate some of the ways in which they might find themselves exposed to unexpected criminal liability we have characterised this group as untrained carers who assume responsibility. (shrink)

Objective—To determine the objectivity, consistency and professional unanimity in the initiation, continuation and withdrawal of life-prolonging procedures in intensive care–to determine methods, time-scale for withdrawal and communication with both staff and relatives–to explore any professional unease about legality, morality or professional defensibility.Design—A structured questionnaire directed at clinical nurse managers for intensive care.Setting—All intensive care units in the Yorkshire region.Results—The survey reported a lack of consistency and objectivity in decision making in this area, with accompanying unease amongst staff.Conclusions—There is a (...) need to work towards more consistent care, both before and during admission, for the protection of the individual patient and to allow rational assessment of intensive care need. Comprehensive audit should lead to objective defensible decisions and facilitate informed choice. More open debate and better communication should minimise this issue as a source of stress amongst staff in intensive care. (shrink)

The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.

Objectives: The objective of this study is to estimate the proportion of different types of end‐of‐life decisions (ELDs) of physicians in the city of Hasselt (Flanders, Belgium). The question is addressed to what degree these ELD meet legal constraints and the ethical requirements for prudent practice. Methodology: All physicians of the city of Hasselt who signed at least one death certificate in 1996 (N=166) received an anonymous self‐administered mail questionnaire per death case (max. 5/doctor) Results: the response rate (...) was 55% (N=269). In 37.3% of all cases at least one ELD was made (16.5% non‐treatment decisions; 16% potential life‐shortening by intensifying the treatment of pain and symptoms; 4.8% administration, supply or prescription of lethal drugs). In 59.5% of the cases were an ELD was made that decision was legally questionable. Patient characteristics were clearly related to the type of ELD. There was no influence of physician characteristics, except for commitment to life‐stance. In 71.3% of the cases the ELD was in no way discussed with the patient. 8.1% of the ELD‐cases were in response to a direct request from the patient Conclusions: The incidences of ELDs in Hasselt are consistent with earlier findings. The study shows that religious commitment influences the behaviour of physicians at the end of their patients' life. The patient's and her family's entitlements to participation in the decision making process were rather poorly respected. (shrink)

Background Doctors often deal with end-of-life issues other than assisted death, such as incompetent patients and treatment withdrawal, including food and fluids. Methods A link to a questionnaire was sent by email three times, at one-week intervals, to the doctors registered in the Northern Section of the Portuguese Medical Association. Results The questionnaire was returned by 1148 (9%) physicians. This study shows that only a minority of Portuguese doctors were willing to administer drugs in lethal doses to cognitively incompetent (...) patients at the request of a family member or other close person, and even less would do it on their initiative. Most doctors favored the withdrawal of life support measures in advanced and progressive diseases at the patient’s request. Still, much fewer doctors agreed with the suspension of supportive life measures at the request of a family member, another close person, or by their own unilateral decision. However, fewer agreed with that action concerning the rest of the food and fluids. Portuguese doctors favor the administration of drugs for suffering control, even foreseeing they could shorten life. Conclusion Most doctors in this study respect patients’ autonomy but disagree with measures decided by others that have an impact on patients’ survival. They also agree with the administration of drugs for suffering control, even considering the possibility of shortening life. (shrink)

Objectives: This study investigated Finnish physicians’ experiences of decisions concerning living wills and do not resuscitate orders and also their views on the role of patients and family members in these decisions.Design: A questionnaire was sent to 800 physicians representing the following specialties: general practice ; internal medicine ; neurology , and oncology .Results: The response rate was 56%. Most of the respondents had a positive attitude toward , and respect for living wills, and 72% reported situations in (...) which such a will would have been helpful, although experience with their use was limited. The physicians reported both benefits and problems with living wills. Thirteen per cent had completed a living will of their own. Half did not consider living wills to be reliable if they were several years old. Do not resuscitate orders were interpreted in two ways: resuscitation forbidden or only palliative care required . The respondents also documented DNR orders differently. Seventy two per cent discussed DNR decisions always or often with patients able to communicate, and even 76% discussed DNR orders with the family members of patients unable to communicate. Most respondents were able to approach a dying patient without difficulty. They also felt that education in general was needed.Conclusions: In general Finnish physicians accept living wills, but find they are accompanied by several problems. Many problems could be avoided if physicians and patients conducted progressive discussions about living wills. The differing interpretations of DNR orders are a matter of concern in that they may affect patient treatment. The promotion of patient autonomy with respect to treatment seems rather good, but the limitations of the study need to be kept in mind. (shrink)

As is evident from the other articles in this special issue, end-of-life treatment has engendered a vigorous dialogue in the United States over the past few decades because decision making at the end of life raises broad and difficult ethical issues that touch on health professionals, patients, and their families. This concern is exacerbated by the high cost related to the end of life in the U.S. Moreover, in light of demographic patterns, progressively scarce health care resources, (...) and an expanding array of life-saving technologies, decisions at the end of life are becoming problematic matters of public and, thus, scholarly concern in most countries. Issues at the end of life are central not only to bioethics but also raise important ancillary policy dimensions. (shrink)

End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family’s position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult (...) decision-making processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient. (shrink)

Critical care of neonatesThe recently published report of the Nuffield Council on Bioethics, Critical care decisions in fetal and neonatal medicine, is a valuable contribution to the discussion of decision making in the critical care of neonates. Drawing upon medical evidence, the working party highlights the many practical difficulties arising in neonatal care and by setting out clearly the nature of the ethical and other issues arising in this area of medicine, and their relationship with neonatal development, the resulting (...) report has the potential to lead both to improved practice and to better informed communication between doctors and families when they face difficult decisions about how best to treat very premature babies. Based on medical evidence, the working party sets out guidelines on decision-making about the resuscitation of babies born before the gestational age of 25 weeks and 6 days, dividing this period into four chronological periods: before 21 weeks and 6 days when resuscitation should normally only take place within the context of a research project; between 22 weeks and 23 weeks when resuscitation should not normally be carried out unless the parents request it; at 23 or 24 weeks when parental views should take precedence; and, after 24 weeks when resuscitation should be the norm unless not in the child’s best interests.There are several practical ethical difficulties with this aspect of the advice. To what extent, for example, does the paediatric assessment of the child, intended to play a role in decision-making about the appropriateness of resuscitation, itself depend on the initiation of resuscitation? To what extent is it reasonable and humane to expect parents to take full responsibility for making decisions about resuscitation between 23 and 24 weeks? On what grounds is it acceptable to attempt to resuscitate a baby <21 weeks and 6 …. (shrink)

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. (shrink)

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

ABSTRACT 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 ethically more acceptable, with the informed consent of the patient than without. But both non‐resuscitation decisions, and decisions to provide pain relief in doses that will shorten (...) the patient's life, have been made and found acceptable by at least 50% of the respondents, even when there is no informed consent. Furthermore, 12% have doubled morphine dosages with fixed intervals, thus providing doses substantially higher than that necessary to control pain, without the informed consent of the patient. Two per cent have helped in assisted suicide, and 5% have administered a lethal injection at the patient's request. Respectively 37% and 34% find these last two practices ethically acceptable. Amongst those that do not find them acceptable, the most important reasons to be opposed are, the doctrine of double effect, the doctrine of doing and allowing, and the view that human life is sacred. Amongst supporters, the most important reasons mentioned are, that the patient's right to self‐determination should be respected, the view that a patient should not be forced to suffer, and the view that the patient has a right to be helped to a dignified death. (shrink)

End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dignity. Unbearable suffering, decisional competence, and awareness of memory deficits are (...) among the clinical considerations that physicians should incorporate during the end-of-life decision-making process. However, as other societies introduce legislature granting the right of PAD, new social determinants should be considered; Mexico City is an example. Current perspectives regarding advance euthanasia directives (AED) and PAD in patients with dementia are evolving. A new perspective that hinges on the role of the family and geriatric assent should help culturally heterogeneous societies in the transition of their public health care policies regarding end-of-life choices. (shrink)

ABSTRACT:Most medical learned societies have endorsed both "equivalence" between all forms of withholding or withdrawing treatment and the "discontinuity" between euthanasia and practices to withhold or withdraw treatment. While the latter are morally acceptable insofar as they consist in letting the patient die, the former constitutes an illegitimate act of actively interfering with a patient's life. The moral distinction between killing and letting die has been hotly debated both conceptually and empirically, most notably by experimental philosophers, with inconclusive results. (...) This article employs a "revisionary" intuititionist perspective to discuss the results of a clinical ethics study about intensivists' perceptions of withhold or withdraw decisions. The results show that practitioners' moral experience is at odds with both the discontinuity and equivalence theses. This outcome allows us to revisit certain concepts, such as intention and causal relationship, that are prominent in the conceptual debate. Intensivists also regard end-of-life decisions as being on a scale from least to most active, and whether they regard active forms of end-of-life decisions as ethically acceptable depends on the overarching professional values they endorse: the patient's best chances of survival, or the patient's quality of life. (shrink)

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support and protect the (...) patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process. (shrink)

BackgroundAlthough the Life-Sustaining Treatment (LST) Decision Act was enforced in 2018 in Korea, data on whether it is well established in actual clinical settings are limited. Hospital-acquired pneumonia (HAP) is a common nosocomial infection with high mortality. However, there are limited data on the end-of-life (EOL) decision of patients with HAP. Therefore, we aimed to examine clinical characteristics and outcomes according to the EOL decision for patients with HAP.MethodsThis multicenter study enrolled patients with HAP at 16 referral hospitals (...) retrospectively from January to December 2019. EOL decisions included do-not-resuscitate (DNR), withholding of LST, and withdrawal of LST. Descriptive and Kaplan–Meier curve analyses for survival were performed.ResultsOf 1,131 patients with HAP, 283 deceased patients with EOL decisions (105 cases of DNR, 108 cases of withholding of LST, and 70 cases of withdrawal of LST) were analyzed. The median age was 74 (IQR 63–81) years. The prevalence of solid malignant tumors was high (32.4% vs. 46.3% vs. 54.3%, P = 0.011), and the ICU admission rate was lower (42.9% vs. 35.2% vs. 24.3%, P = 0.042) in the withdrawal group. The prevalence of multidrug-resistant pathogens, impaired consciousness, and cough was significantly lower in the withdrawal group. Kaplan–Meier curve analysis revealed that 30-day and 60-day survival rates were higher in the withdrawal group than in the DNR and withholding groups (log-rank P = 0.021 and 0.018). The survival of the withdrawal group was markedly decreased after 40 days; thus, the withdrawal decision was made around this time. Among patients aged below 80 years, the rates of EOL decisions were not different (P = 0.430); however, mong patients aged over 80 years, the rate of withdrawal was significantly lower than that of DNR and withholding (P = 0.001).ConclusionsAfter the LST Decision Act was enforced in Korea, a DNR order was still common in EOL decisions. Baseline characteristics and outcomes were similar between the DNR and withholding groups; however, differences were observed in the withdrawal group. Withdrawal decisions seemed to be made at the late stage of dying. Therefore, advance care planning for patients with HAP is needed. (shrink)

Objectives Potentially life-shortening medical end-of-life practices ) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices they label as euthanasia or sedation.Methods We conducted a large stratified random sample of death certificates from 2007 . 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%.Results 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 absent in 79.7%.Discussion Our results suggest that, unlike euthanasia, the concept of palliative or terminal sedation covers a broad 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. (shrink)

End-of-life decision-making is controversial. There are different views about when it is appropriate to limit life-sustaining treatment, and about what palliative options are permissible. One approach to decisions of this nature sees consensus as crucial. Decisions to limit treatment are made only if all or a majority of caregivers agree. We argue, however, that it is a mistake to require professional consensus in end-of-life decisions. In the first part of the article we explore practical, (...) ethical, and legal factors that support agreement. We analyse subjective and objective accounts of moral reasoning: accord is neither necessary nor sufficient for decisions. We propose an alternative norm for decisions – that of ‘professional dissensus’. In the final part of the article we address the role of agreement in end-of-life policy. Such guidelines can ethically be based on dissensus rather than consensus. Disagreement is not always a bad thing. (shrink)

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise (...) concerning children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families. (shrink)

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 ethically more acceptable, with the informed consent of the patient than without. But both non-resuscitation decisions, and decisions to provide pain relief in doses that will shorten the patient's (...) life, have been made and found acceptable by at least 50% of the respondents, even when there is no informed consent. Furthermore, 12% have doubled morphine dosages with fixed intervals, thus providing doses substantially higher than that necessary to control pain, without the informed consent of the patient. Two per cent have helped in assisted suicide, and 5% have administered a lethal injection at the patient's request. Respectively 37% and 34% find these last two practices ethically acceptable. Amongst those that do not find them acceptable, the most important reasons to be opposed are, the doctrine of double effect, the doctrine of doing and allowing, and the view that human life is sacred. Amongst supporters, the most important reasons mentioned are, that the patient's right to self-determination should be respected, the view that a patient should not be forced to suffer, and the view that the patient has a right to be helped to a dignified death. (shrink)

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, (...) cost effectiveness and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (shrink)

The aim of this study was to assess attitudes of intensive care nurses to selected ethical issues related to end-of-life decisions in paediatric intensive care units. A self-administered questionnaire was distributed in 2005 to intensive care nurses at two different scientific occasions in Turkey. Of the 155 intensive care nurse participants, 98% were women. Fifty-three percent of these had intensive care experience of more than four years. Most of the nurses failed to agree about withholding (65%) or withdrawing (...) (60%) futile treatment. In addition, 68% agreed that intravenous nutrition must continue at all costs. In futile treatment cases, the nurses tended to leave the decision to parents or act maternalistically. The results showed that intensive care nurses could ignore essential ethical duties in end-of-life care. We suggest that it is necessary to educate Turkish intensive care nurses about ethical issues at the end of life. (shrink)

This paper discusses the role of consent in decision making generally and its role in end of life decisions in particular. It outlines a conception of autonomy which explains and justifies the role of consent in decision making and criticises some misapplications of the idea of consent, particular the role of fictitious or “proxy” consents.Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, (...) then that decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable.Where, however, the human individual is not a person, as is the case with abortion, the death of infants like Mary , or in the very rare and extreme cases of those who have ceased to be persons like Tony Bland, such decisions are governed by the ethics of ending the lives of non-persons. (shrink)

In contemplating any life and death moral dilemma, one is often struck by the possible importance of two distinctions; the distinction between killing and “letting die”, and the distinction between an intentional killing and an action aimed at some other outcome that causes death as a foreseen but unintended “side-effect”. Many feel intuitively that these distinctions are morally significant, but attempts to explain why this might be so have been unconvincing. In this paper, I explore the problem from an (...) explicitly consequentialist point of view. I first review and endorse the arguments that the distinctions cannot be drawn with perfect clarity, and that they do not have the kind of fundamental significance required to defend an absolute prohibition on killing. I go on to argue that the distinctions are nonetheless important. A complete consequentialist account of morality must include a consideration of our need and ability to construct and follow rules; our instincts about these rules; and the consequences that might follow if the agent breaks a good general rule, particularly if this involves acting contrary to moral instinct. With this perspective, I suggest that the distinctions between killing and letting die and between intending and foreseeing do have moral relevance, especially for those involved in the care of the sick and dying. (shrink)

The end of Roe v. Wade has significant implications for the autonomy of pregnant patients at the end of life. At least thirty states restrict the choice to withhold/withdraw life-sustaining treatments from pregnant patients without decisional capacity, invalidating prior advance directives and prohibiting others from choosing these options for the patient. Many restrictions are based on the Roe framework, applying after “viability” or similar considerations of fetal development or prospect for live birth. Scholars have also relied on the (...) abortion framework, arguing that the restrictions impose an undue burden. The end of Roe will free states from having to craft limited restrictions designed to work around prior abortion jurisprudence. Similarly, advocates will no longer be able to draw support from the abortion framework, forcing them to rely instead on cases supporting rights to autonomy/bodily integrity in medical decision-making. (shrink)

Background End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data. Methods A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units (...) in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire. Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach. Results Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score were more likely to limit, while those with a low score were more likely for continuation of intensive care. Physicians’ educational level, involvement in research, religion and position on the existing legal framework were factors that affected the attitude score. Conclusions Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform. (shrink)

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. 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. (shrink)