Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars' views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, and was analyzed through deductive content analysis. (...) Analysis revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient's autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients' care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God's will, boundaries of man's authority, and the physician's ethical duties and obligations should be developed. (shrink)

Background In an increasingly globalized world, legal protocols related to health care that are both effective and culturally sensitive are paramount in providing excellent quality of care as well as protection for physicians tasked with decision making. Here, we analyze the current medicolegal status of brain death diagnosis with regard to end-of-life care in Japan, China, and South Korea from the perspectives of front-line health care workers. Main body Japan has legally wrestled with the concept of brain death for decades. (...) An inability to declare brain death without consent from family coupled with cultural expectations of family involvement in medical care is mirrored in other Confucian-based cultures and may complicate care for patients from these countries when traveling or working overseas. Within Japan, China, and South Korea, medicolegal shortcomings in the diagnosis of brain death act as a great source of stress for physicians and expose them to potential public and legal scorn. Here, we detail the medicolegal status of brain death diagnosis within Japan and compare it to China and South Korea to find common ground and elucidate the impact of legal ambiguity on health care workers. Conclusion The Confucian cultural foundation of multiple Asian countries raises common issues of family involvement with diagnosis and cultural considerations that must be met. Leveraging public education systems may increase awareness of brain death issues and lead to evolving laws that clarify such end-of-life issues while protecting physicians from sociocultural backlash. (shrink)

The great irony of the work of right-to-life advocates who sought in vain to prolong Terri Schiavo's life is that all the publicity about the case has triggered a surge in the number of people completing advance declarations, making it clear that they do not wish to continue to live in circumstances like those in which Schiavo lived for the fifteen years before her death. Thus, the fight over the removal of Schiavo's feeding tube is likely to significantly increase the (...) number of feeding tubes removed. More broadly, the case has revived interest in the full range of right-to-die questions, including issues like active voluntary euthanasia and physician-assisted suicide-which, because they require a patient to be competent to make decisions, raise ethical questions very different from those at issue in the Schiavo case. (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)

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: Life-sustaining treatment at the end of life gives rise to many ethical problems in Japan. Recent surveys of Japanese physicians suggested that they tend to treat terminally ill patients aggressively. We studied why Japanese physicians were reluctant to withhold or withdraw life-support from terminally ill patients and what affected their decisions. DESIGN AND PARTICIPANTS: A qualitative study design was employed, using a focus group interview with seven physicians, to gain an in-depth understanding of attitudes and rationales in Japan (...) regarding medical care at the end of life. RESULTS: Analysis revealed that physicians and patients' family members usually make decisions about life-sustaining treatment, while the patients' wishes are unavailable or not taken into account. Both physicians and family members tend to consider withholding or withdrawing life-sustaining treatment as abandonment or even killing. The strongest reason to start cardiopulmonary resuscitation- and to continue it until patients' family members arrive-seems to be the family members' desire to be at the bedside at the time of death. All physicians participating in our study regarded advance directives that provide information as to patients' wishes about life-sustaining treatment desirable. All expressed concern, however, that it would be difficult to forego or discontinue life-support based on a patient's advance directive, particularly when the patient's family opposed the directive. CONCLUSION: Our group interview suggested several possible barriers to death with dignity and the appropriate use of advance directives in Japan. Further qualitative and quantitative research in this regard is needed. (shrink)

Medical decisions regarding end-of-life care have undergone significant changes in recent decades, driven by changes in both medicine and society. Catholic tradition in medical ethics offers clear guidance in many issues, and a moral framework accessible to those who do not share the same faith as well as to members of its faith community. In some areas, a Catholic perspective can be seen clearly and confidently, such as in teachings on the permissibility of suicide and euthanasia. In others, such (...) as withdrawal of nutrition and hydration, the Church does not yet speak with one voice and has not closed out the discussion. Yet, it is not in the teaching on individual issues that a Catholic moral tradition offers the most help and comfort, but in its account of what it means to lead a life in Christ, and to prepare for a Christian death. As in the problem of pain and suffering, it is the spiritual support more than the ethical guidance that helps both patients and physicians bear the unbearable and fathom the unfathomable. (shrink)

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)

In this article, we discuss the case of Michael Johnson, an African-American man who sought treatment for respiratory distress due to COVID-19, but who was adamant that he did not want to be intubated due to his belief that ventilators directly cause death. This case prompted reflection about the ways in which a false belief can create uncertainty and complexity for clinicians who are responsible for evaluating decision-making capacity (DMC). In our analysis, we consider the extent to which Mr. Johnson (...) demonstrated capacity according to each of Appelbaum’s criteria. Although it was fairly clear that Mr. Johnson lacked DMC on the basis of both understanding and appreciation, we found ourselves reflecting upon the false belief that seemed to motivate his refusal. This led us to further consider the ways in which our current social and political environment can complicate evaluations of patients’ preferences and reasons for declining life-sustaining interventions. In particular, we consider the impact of the role of misinformation and systemic racism in preparing the grounds for false beliefs. (shrink)

OBJECTIVES: In treating critically ill neonates, situations occasionally arise in which aggressive medical treatment prolongs the inevitable death rather than prolonging life. Decisions as to limitation of neonatal medical intervention remain controversial and the primary responsibility of the generally unprepared family. This research was designed to study response patterns of expectant mothers towards treatment of critically ill and/or malformed infants. DESIGN/SETTING: Attitudes were studied via comprehensive questionnaires divided into three sections: 1-Sociodemographic data and prior personal experience with perinatal problems; (...) 2-Theoretical philosophical principles used in making medical ethical decisions; and 3-Hypothetical case scenarios with choices of treatment options. SUBJECTS AND RESULTS: Six hundred and fifty pregnant women were studied. Maternal birthplace (p = 0.005) and level of religious observance (p = 0.02) were strongly associated with the desire for maximally aggressive medical intervention in the hypothetical case scenario. Specific personal experiences such as infertility problems, previous children with serious mental or physical problems were not correlated with the selection of different treatment choices. Of the theoretical principles studied, only the desire to preserve life at all costs was significantly associated with the choice for maximal medical treatment (p = 0.003). CONCLUSIONS: Maternal ethnocultural background and philosophical principles more profoundly influenced medical ethical decision-making than did specific personal life experiences. (shrink)

_The purpose _of this article is to find out whether philosophical and anthropological studies of human nature affect the legitimization of decisions about human life and death, using the example of a philosophical analysis of the problem of euthanasia. _Theoretical__ basis._ Philosophically and anthropologically based situational analysis in bioethics is chosen as the research methodology, which reveals the legitimation of euthanasia as a complex and highly responsible moral decision, which should be based on both the consideration of all the (...) patient’s special circumstances and the competent and adequate application of fundamental knowledge about the human being. _Originality._ From a philosophical point of view, it would be correct to legalize euthanasia, but under the condition of significantly limiting the cases of its application, clearly defining the conditions for its provision and strict control over its implementation. It is morally unacceptable to justify either murder or torture, so euthanasia appears as an attempt to avoid both at the same time. _Conclusions._ Specific solutions to practical problems often indicate the necessary direction for solving theoretical difficulties. Thus, making proper moral decisions about euthanasia requires reliance on fundamental knowledge about human beings, but at the same time it provides arguments "for" and "against" artificial termination of life. The basic principles of bioethics – autonomy, nonmaleficence, beneficence and respect for the dignity of human life – serve as criteria for making balanced ethical decisions both in theory and in practice. These principles should be complemented by a coherent ethical, legal and philosophical position on euthanasia, which is achieved through legitimation procedures. Decisive for making a decision on euthanasia should be the strong desire of the patient himself. (shrink)

BackgroundHealth decisions occur in a context with omnipresent social influences. Information concerning what other patients decide may present certain interventions as more desirable than others.ObjectivesTo explore how physicians refer to what other people decide in conversations about the relevancy of cardio-pulmonary resuscitation or do-not-attempt-resuscitation orders.MethodsWe recorded forty-three physician–patient admission interviews taking place in a hospital in French-speaking Switzerland, during which CPR is discussed. Data was analysed with conversation analysis.ResultsReference to what other people decide in regards to CPR is used (...) five times, through reported speech. The reference is generic, and employed as a resource to deal with trouble encountered with the patient’s preference, either because it is absent or potentially incompatible with the medical recommendation. In our data, it is a way for physicians to present decisional paths and to steer towards the relevancy of DNAR orders. By calling out to a sense of membership, it builds towards the patient embracing norms that are associated with a desirable or relevant social group.ConclusionsIntroducing DNAR decisions in terms of what other people opt for is a way for physicians to bring up the eventuality of allowing natural death in a less overt way. Formulating treatment choices in terms of what other people do has implications in terms of supporting autonomous and informed decision making, since it nudges patients towards conformity with what is presented as the most preferable choice on the basis of social norms. (shrink)

Background: Independent decision-making is one of the basic rights of patients. However, in clinical practice, most older cancer patients’ treatment decisions are made by family members. Objective: This study attempted to analyze the treatment decision-making process and formation mechanism for older cancer patients within the special cultural context of Chinese medical practice. Method: A qualitative study was conducted. With the sample saturation principle, data collected by in-depth interviews with 17 family members and 12 patients were subjected to thematic analysis. (...) Ethical considerations: The study was approved by the ethics committees of Sun Yat-sen University. All participants provided verbal informed consent after being told their rights of confidentiality, anonymity, and voluntary participation. They had the right to refuse to answer questions and could withdraw at any time. Results: Three themes emerged: (1) complex process; (2) transformation of family decision-making power; and (3) individual compromise. Family members inevitably had different opinions during the long process of treatment decision-making for older cancer patients. The direction of this process could be regarded as an extension of the family power relationship. The patient usually compromised the decision to survive, which was made by family members. Conclusion: This study describes the treatment decision-making process of older cancer patients in the context of Chinese culture. The reasons underlying this process are related to the views on life and death and family values. An individual is a part of the family, which is often seen as the minimal interpersonal unit in Chinese society. It is significant that while emphasizing patient autonomy in the decision-making process, health professionals should also pay attention to the important roles of culture and family. (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)

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)

This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a (...) sign perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements. (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)

BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis (...) of a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)

Tough Decisions presents many of the complex medical-ethical issues likely to confront practitioners in critical situations. Through fictional but true-to-life cases, vividly described in clinical terms, the authors force the reader to choose among different courses of action and to confront a range of possible consequences. A two-year-old has been diagnosed with a malignant brain tumor. Who should be allowed to make decisions about the child's surgery and subsequent therapy, and on what basis? A family history of Huntington's (...) disease emerges when a fiancee seeks genetic counseling. Who should be informed? An elderly patient suffers a cardiac arrest. Should "do-not-resuscitate" orders always be followed? How should legal liability affect medical decisions? Other ethical issues considered include surgical complications, patient autonomy, rights of the retarded, informed consent, euthanasia, and the fair allocation of finite resources. Each case presented conveys the drama and pressure of weighing alternatives, and the realistic consequences of the choices made. The authors show that ethical decision-making is not limited to "matters of life and death", and that it is not the decision but the ethical process by which it is made that gives the decision moral integrity. With realistic detail, Tough Decisions brings to life and makes the student share in the many complexities of ethical decision-making when the health and lives of patients are at stake. (shrink)

BackgroundAlthough nurses are crucial to ensure patients’ peaceful death in hospitals, many nurses experience various ethical conflicts during end-of-life care. Therefore, research on nurses’ entire ethical decision-making process is required to improve nurses’ ethical decision-making in end-of-life care. This study aimed to identify Korean nurses’ ethical decision-making process based on their moral sensitivity to end-of-life patients.MethodsIn total, 171 nurses caring for terminal patients responded to the survey questionnaire. To measure the participants’ moral sensitivity and ethical decision-making process, we used the (...) Korean version of the Moral Sensitivity Questionnaire and Nurses’ Ethical Decision-Making around End of Life Care Scale. Finally, multiple linear regression analysis was used to investigate the effect of moral sensitivity on nurses’ ethical decision-making.ResultsThe mean of moral sensitivity was 4.8 ± 0.5 (out of 7), and that of ethical decision-making was 4.6 ± 0.5 (out of 6). Among the sub-dimensions of ethical decision-making, the highest score was in perceived professional accountability (5.2 ± 0.5), and the lowest in moral reasoning and moral agency (3.9 ± 0.6); the score of moral practice was 4.4 ± 0.7. In the multiple linear regression model, moral sensitivity (β = 0.852, p <.001), clinical department (β = − 7.018, p =.035), ethics education (β = 20.450, p <.001), job satisfaction (β = 5.273, p <.001), and ethical conflict (β = − 2.260, p = 0.031) were influential ethical decision-making factors.ConclusionsThis study revealed a gap between nurses’ thoughts and practices through the ethical decision-making process. They failed to lead their thought to moral practice. It also implies that moral sensitivity could positively affect nurses’ ethical decision-making. To make nurses morally sensitive, exposing them to various clinical cases would be helpful. Additionally, ethics education and clinical ethics supporting services are valuable for improving nurses’ ethical decision-making. If nurses improved their ethical decision-making regarding end-of-life care, their patients could experience a better quality of death. (shrink)

In this paper, we consider three arguments for the irrelevance of the doctrine of double effect in end-of-life decision making. The third argument is our own and, to that extent, we seek to defend it. The first argument is that end-of-life decisions do not in fact shorten lives and that therefore there is no need for the doctrine in justification of these decisions. We reject this argument; some end-of-life decisions clearly shorten lives. The second is that the (...) doctrine of double effect is not recognized in UK law ; therefore, clinicians cannot use it as the basis for justification of their decisions. Against this we suggest that while the doctrine might have dubious legal grounds, it could be of relevance in some ways, e.g. in marking the boundary between acceptable and unacceptable practice in relation to the clinician's duty to relieve pain and suffering. The third is that the doctrine is irrelevant because it requires there to be a bad effect that needs justification. This is not the case in end-of-life care for patients diagnosed as dying. Here, bringing about a satisfactory dying process for a patient is a good effect, not a bad one. What matters is that patients die without pain and suffering. This marks a crucial departure from the double-effect doctrine; if the patient's death is not a bad effect then the doctrine is clearly irrelevant. A diagnosis of dying allows clinicians to focus on good dying and not to worry about whether their intervention affects the time of death. For a patient diagnosed as dying, time of death is rarely important. In our conclusion we suggest that acceptance of our argument might be problematic for opponents of physician-assisted death. We suggest one way in which these opponents might argue for a distinction between such practice and palliative care; this relies on the double-effect doctrine's distinction between foresight and intention. (shrink)

Medical decisions concerning noncompetent patients that are most morally problematical are those that involve life and death choices. In making these choices for others, I urge that decision-makers carefully attend to the degree and history of a person's noncompetence, and distinguish four relevant categories of competence: partial, potential, lost and never possessed. Attending to these will help enable us to sort out when and how autonomous choice is possible and desirable and when and how to rely upon a judgment (...) of a patient's best interests instead. This conflict is explored with particular reference to the Quinlan, Fox and Saikewicz cases. I argue that respect for autonomy, wherever possible, has presumptive priority, and that it is more often possible than frequently supposed. On the other hand, the notion of autonomous choice itself is perverted when forced upon inappropriate cases, such as those presented by the never competent. Here it is not merely legitimate, but inescapable to use a best interest criterion that ignores autonomy in making treatment decisions. Specific cases in which these normally distinct guidelines for decision-making concur, conflict and need resolution are discussed. In the end it is often more important to determine who will choose than by what substantive criteria he or she will be guided. In considering this issue, I try to show that the substantive criteria have implications for who the proper decision-makers are in many problematical cases. (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)

In the course of history, many individuals have the dubious honor of being remembered primarily for an eponym of which they would disapprove. How many are aware that Joseph-Ignace Guillotin actually opposed the death penalty? Another notable case is that of Maria Agnesi, an Italian woman of privileged, but not noble, birth who excelled at mathematics and philosophy during the eighteenth century. In her treatise of 1748, Instituzioni Analitiche, she provided a comprehensive summary of the current state of knowledge concerning (...) both integral calculus and differential equations. Later in life she was elected to the Bologna Academy of Sciences and, in 1762, was consulted by the University of Turin for an opinion on the work of an up-and-coming mathematician named Joseph-Louis Lagrange. (shrink)

As clinicians, this case1 raises both personal and professional challenges. A key issue is who carries legal parental responsibility for the difficult decisions that may be required around life-sustaining care in baby T. Medicolegally, we understand that the surrogate mother holds legal parental responsibility for baby T until this can be transferred to the intended parents.2 But this process can take many months to complete, after the birth of baby. As M is now critically ill and unable to engage (...) in any discussion around the care of her baby, who becomes the legal guardian of the baby, for complex decision making that involves either reorientation of care away from intensive care with the inevitable consequence of death in this extremely premature baby, or continuing this life-sustaining treatment with a high likelihood for major neonatal morbidity and longer term disability? Does it pass onto one of the IPs as the genetic father, or does this responsibility fall on the neonatal consultant managing the baby in intensive care? And if an antenatal surrogacy agreement had existed, is it legally binding for inclusion of the IPs perspectives in the decision-making, especially if our medical decision making turns out to be at discord with the beliefs and wishes of the IPs for baby T? Box 1 ### Current surrogacy proceedings in the UK.2 6–8 The Law Commission UK5 is currently reviewing the decision on whether legal parenthood to intended parents can be effected immediately at the time of birth of the baby. Parental orders. (shrink)

Research shows that the physician’s personal attributes and social characteristics have a strong association with their end-of-life decision making. Despite efforts to increase patient, family and surrogate input into EOL decision making, research shows the physician’s input to be dominant. Our research finds that physician’s social values, independent of religiosity, have a significant association with physician’s tendency to withhold or withdraw life sustaining, EOL treatments. It is suggested that physicians employ personal social values in their EOL medical coping, because they (...) have to cope with existential dilemmas posed by the mystery of death, and left unresolved by medical decision making mechanisms such as advanced directives and hospital ethics committees. (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)

Future weapons will make life-or-death decisions without a human in the loop. When such weapons inflict unwarranted harm, no one appears to be responsible. There seems to be a responsibility gap. I first reconstruct the argument for such responsibility gaps to then argue that this argument is not sound. The argument assumes that commanders have no control over whether autonomous weapons inflict harm. I argue against this assumption. Although this investigation concerns a specific case of autonomous weapons systems, I (...) take steps towards vindicating the more general idea that superiors can be morally responsible in virtue of being in command. (shrink)

Background: 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 , including those in Israel. Several results of the Israeli subsample were different to those of the overall sample.Objective: 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.Method: All adult patients admitted consecutively to three Israeli ICUs who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively . These patients were compared with a similar sample taken from the larger study 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 , brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process . The data also included patient characteristics , specific therapies limited, and the method of SDP.Results: The majority of patients had treatment withheld, none underwent SDP, 62 received CPR , 31 had brain death , and 18 underwent withdrawal of treatment . The primary reason given for limiting treatment was that the patient was unresponsive to therapy . End of life discussions were held with 132 families , the vast majority of which revolved around withholding treatment and the remainder concerned withdrawing treatment .There was a statistically significant association between the type of end of life decision and region—that is, the northern region of Europe, the central region, the southern region, and Israel.Conclusions: Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions. (shrink)

The position of the United Methodist Church on end-of-life decisions is best described as intentional ambiguity or ambiguous intentions or both. The paper analyzes the official position of the denomination and then considers the actions of a U.M.C. bishop who served as a foreman for a trial of Dr. Jack Kevorkian. In an effort to find some common ground within an increasingly divided denomination, the work concludes with a consideration of the work of John Wesley and his approach to (...) human death. (shrink)

Decisions regarding the end-of-life of minor patients are amongst the most difficult areas of decision-making in pediatric health care. In this field of medicine, such decisions inevitably occur early in human life, which makes one aware of the fact that any life—young or old—cannot escape its temporal nature. Belgium and the Netherlands have adopted domestic regulations, which conditionally permit euthanasia and physician-assisted suicide in minors who experience hopeless and unbearable suffering. One of these conditions states that the minor (...) involved must be legally competent and able to express an authentic and lasting wish to die. This contribution is different from other legal texts on end-of-life decisions in modern health care. Foremost, it deals with the role time-bound components play in our views on the permissibility of such decisions with regard to minor patients. While other disciplines provide profound reflections on this issue, from a legal point of view this side has hardly been explored, let alone examined with regard to its relevance for the legal permissibility of end-of-life decisions in pediatrics. Therefore, the manuscript inquires whether there are legal lessons to be learned if we look more closely to temporality-related aspects of these end-of-life decisions, particularly in connection to a minor patient’s assumable ability to choose death over an agonizing existence. (shrink)

Background: Relatives of intensive care unit patients who lack or have reduced capacity to consent are entitled to information and participation in decision-making together with the patient. Practice varies with legislation in different countries. In Norway, crucial decisions such as withdrawing treatment are made by clinicians, usually morally justified to relatives with reference to the principle of non-maleficence. The relatives should, however, be consulted about whether they know what the patient would have wished in the situation. Research objectives: To (...) examine and describe relatives’ experiences of responsibility in the intensive care unit decision-making process. Research design: A secondary analysis of interviews with bereaved relatives of intensive care unit patients was performed, using a narrative analytical approach. Participants and research context: In all, 27 relatives of 21 deceased intensive care unit patients were interviewed about their experiences from the end-of-life decision-making process. Most interviews took place in the participants’ homes, 3–12 months after the patient’s death. Ethical considerations: Based on informed consent, the study was approved by the Data Protection Official of the Norwegian Social Science Data Services and by the Regional Committee for Medical and Health Research Ethics. Findings: The results show that intensive care unit relatives experienced a sense of responsibility in the decision-making process, independently of clinicians’ intention of sparing them. Some found this troublesome. Three different variants of participation were revealed, ranging from paternalism to a more active role for relatives. Discussion: For the study participants, the sense of responsibility reflects the fact that ethics and responsibility are grounded in the individual’s relationship to other people. Relatives need to be included in a continuous dialogue over time to understand decisions and responsibility. Conclusion: Nurses and physicians should acknowledge and address relatives’ sense of responsibility, include them in regular dialogue and help them separate their responsibility from that of the clinicians. (shrink)

So often, the discussion of what comes at the end of life is side-stepped, avoided, delayed, or never had. Deciding how to make a "good" death, and where to have it, is difficult, but with guidance and examples, the dying and their families can make informed decisions that help ease the path. This book will help them do just that.

The Ministry of Transport is planning for the construction of new roads in its territory. Many projects are being considered, and the Ministry needs to identify the worthwhile projects for which the benefits exceed the costs. Among costs and benefits are the expense of constructing the road, the time saved by motorists using the new road rather than some other road, the time saved through the reduction of congestion on other roads, and the expected increase or decrease in the number (...) of deaths due to traffic accidents. I am concerned in this paper with the last item on the list. It is, of course, difficult to estimate fatalities accurately, but this difficulty is neither unique nor central to our problem. The problem is how best to place a monetary value on fatalities, so that the expected number of fatalities can be compared with other costs and benefits in deciding whether to build a road. However chosen, the monetary value of fatalities for use in this context is what the economist means by “the value of life.” The term is almost a joke, a bit of gallows humor to exorcise the ghoulishness that inevitably clings to analysis of life and death in monetary terms. (shrink)

Despite its virtues, lay decision-making in medicine shares with professional decision-making a disturbing common feature, reflected both in formal policies prohibiting high-risk research and in informal policies favoring treatment decisions made when a crisis or change of status occurs, often late in a downhill course. By discouraging patient decision-making but requiring dedication to the patient's interests by those who make decisions on the patient's behalf, such practices tend to preclude altruistic choice on the part of the patient. This (...) eclipse is to be regretted not just because widescale altruism has the capacity to provide important social goods and correct injustices in distribution, but for intrinsic reasons as well. It is argued that preserving the possibility of altruism obliges patients – and future patients – to make decisions about dying and other medical matters in advance, thus avoiding that displacement of decision-making onto lay and professional second parties which results in altruism's eclipse. Keywords: altruism, medical decision-making, patient's interest, self-interest, autonomy, death and dying decisions, refusal of treatment, prolongation of life, allowing to die, high-risk research CiteULike Connotea Del.icio.us What's this? (shrink)

One of the most important and difficult tasks in medicine is to determine when patients have the capacity to make decisions for themselves. This determination may determine a patient’s life or death. This article presents criteria and approaches now used to make this assessment and discusses how these approaches are presently applied in five common disorders that can serve as paradigms for approaches in other disorders. I propose that since there are new diagnoses and treatments, reconsidering our current practices (...) is warranted. The possibilities that clinicians can nudge patients to make better choices for themselves and, above all, that clinicians can maintain and maximize positive patient/careprovider relationships during and after these assessments, are emphasized. (shrink)

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a (...) do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of ‘DNR’ to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed. (shrink)

In this paper I proceed on the assumption that moral philosophers can and should contribute to the resolution of perplexing moral problems. The ones considered here relate to decisions concerning the distribution of scarce medical resources as between those in need of treatment. I draw on considerations of egalitarianism and concern for the maximization of the use of scarce resources in the task of satisfying basic human needs (such as for good health). I propose certain principles and offer some (...) supporting suggestions as guidelines or rules for medical decisions with a view to providing a helpful decision procedure for the various persons (doctors, community panels and so on) whose task it is to make the life-or-death decisions involved in allocating certain scarce medical resources. -/- . (shrink)

Currently in Japan, it is extremely difficult to realize the basic wish of protecting personal dignity at the end of life. A patient’s right to refuse life-sustaining treatment has not been substantially warranted, and advance directives have not been legally enforceable. Unfortunately, it is not until the patient is moribund that all concerned parties start to deliberate on whether or not death with dignity should be pursued. Medical intervention is often perceived as a worthwhile goal to not only preserve life, (...) but also provide psychological benefit to the family, regardless of its effect on the patient. To feel they are doing something, family members tend to act against the imperative “Do not inflict on others what you would not wish done to you,” and permit extraordinary measures they would not want themselves. Another complication in Japanese culture is the necessity of unanimous decisions for end-of-life care. If there is conflict between a patient and his/her family on accepting medical intervention, the view of the latter is more likely to prevail due to different perceptions of human dignity. As a result, incapacitated patients in Japanese clinical settings often suffer through extraneous medical procedures, particularly during end-of-life care. Patient dignity is in danger from a national refusal to accept major bioethical principles such as having respect for patient autonomy, serving the best interests of the patient, doing no harm, and ensuring fairness at the end of life. We argue that more education about human dignity and legislation for death with dignity are necessary. Peace of mind for patients during end-of-life care will never be achieved in this society unless drastic changes take place in medical ethics and law. (shrink)

I sometimes wonder whether some proponents of physician-assisted suicide or physician-assisted death think they own the copyright to such catchy phrases as “death with dignity” and “a good death” so that if you are against PAS or PAD, thenyou must be againsta dignified death or a good death. If one removes the quotation marks around phrases like “aid-in-dying” or “compassionate care for the dying,” I am not opposed to such end-of-life care either. Indeed, how couldanybodybe against this type of care?I (...) do not want to abandon dying patients anymore than Dr. Timothy Quill does. Although, unfortunately, it will not always be easy to achieve the desired result, I agree with him that it ought to be a goal of medicine “to help people die well, to help them receive a good death” — or at least “the best possible” death under the circumstances. I part company with Professor Quill, however, when he urges us to change the law in the majority of our states so that in some circumstances patients may achieve a “good death” or a “dignified” one by means of lethal drugs. (shrink)

Infant A was born at term with an antenatal diagnosis of gastroschisis. His parents were well informed about the condition and understood that he would require surgery. However, at delivery, his bowel was found to be severely compromised. Infant A returned from theatre with only four centimeters of small bowel. This is physiologically devastating and easily qualifies as ultrashort bowel syndrome (USBS). Whilst the prognosis from ultrashort bowel syndrome is greatly improving, the condition continues to carry a significant risk of (...) mortality and morbidity, in part attributable to treatment itself. The cornerstone of management of USBS is provision of intravenous parenteral nutrition (PN). This is not a physiologically normal route of nutrition; it is a medical treatment. Infant A’s parents questioned whether continuation of active treatment was appropriate. If a treatment is not in the patient’s best interests, then it can be argued it is not justified to administer it. Decisions about quality of life are intensely personal. Where there is a significant burden of treatment, even when there is a potential for increased survival, whether the course of treatment is in the child’s best interests must be taken with huge emphasis on the parental perspective and their family values. For well-informed, realistic parents who are welcoming of the full picture of information and implications of their decision, I argue that parents are best placed to make the decision for their child. Long-term PN for USBS may well be a medically encouraged treatment. However, it should not be medically mandated. (shrink)

On December 7,1999, a divided Oklahoma Supreme Court held in Nealis v. Baird that a claim may be brought under Oklahoma's wrongful death statute on behalf of a nonviable fetus born alive. The decision represents a departure from the traditional notion that “viability”—the ability of a fetus to sustain life outside the womb with or without medical assistance—is the standard for wrongful death recovery. In replacing the “viability” standard with a “live birth” standard, the majority maintained that live birth is (...) the “unassailable point at which legal rights must be said to attach to the human person. “ By holding a nonviable fetus a legal “person” for the purpose of a wrongful death claim, the court's decision emphasizes the limited application of the United States Supreme Court's holding in Roe v. Wade that a fetus is not a person for the purposes of the Fourteenth Amendment. (shrink)

Death’s Dominion is Simon Woods’ addition to the excellent and thought-provoking Facing Death series. Its timeliness is hardly at issue: the debate on euthanasia, end-of-life care and associated issues looks set to rage for some time. And it comes out at a time when the UK Parliament is debating a palliative care bill, designed to promote a duty of the state to provide palliative care to all who need it. The real concern with a work in this area is knowing (...) whether it is worth reading. I think it is. Relatively few are the texts that deal with palliative care, and fewer still are those that deal with it in such a careful and comprehensive manner. No thorough analysis of issues regarding the roles of the state and health care in individuals’ end-of-life decision-making can afford to ignore the specialty, yet it is often left unmentioned. For anyone who wishes to know about it and to see it in a clear social and ethical context, this book will prove highly valuable.The book is logically structured, consisting of eight chapters. Although these lead clearly from one …. (shrink)

This article first examines six fundamental Jewish convictions that affect end-of-life care. It then discusses Advance Directives. This is followed by an extensive section on the details of end-of-life care as from the perspective of Jewish law, tradition, and theology. This includes defining death, foregoing life-sustaining treatment, artificial nutrition and hydration, curing the patient and not the disease, pain control and palliative care, medical experimentation and research, and social support of the sick. The last section discusses care of the deceased, (...) including Jewish norms about burial, cremation, autopsies, organ and tissue donation, and donating one’s body to science. (shrink)

After many years of reflection and debate, there is a clear international trend, indeed a near consensus, to endorse as a matter of ethics and law the modern biomedical conception of brain death as an alternative to the traditional conception of death. Alireza Bagheri has surveyed the current state of the law governing organ donation in eight Asian countries. His research shows that for the purpose of facilitating organ donation, the following countries have adopted the biomedical standard of brain death: (...) Turkey , Saudi Arabia , Singapore , Philippines , India , Japan , Korea , and Iran . In addition, there is an active and ongoing movement in China to also enact a brain death legal standard. On the other hand, the new definition of brain death always has been controversial. It is worthwhile to pause and survey the arguments for and the objections to the now popular conception of human death as brain-death. In light of the arguments over the definition of death and also of a survey of the different legal constraints on organ donation in different countries, the key elements of a model policy that incorporates the best of all of these different approaches will be defended. This model policy incorporates a pluralist standard of death, which allows individuals to choose a cardio-respiratory, whole brain, or higher brain conception of death. It also includes what I call a donor-recipient priority principle that gives priority to organ donors as recipient of organ transplants. Rather than requiring an organ donor card, a model policy should be based on a principle of presumed consent for organ transplant and a principle of surrogate consent. Finally, although a principle requiring family consent is too restrictive, family consultation in these important decisions should be encouraged by physicians and public policy. (shrink)

The management of an infant after a decision to withdraw active treatment creates dilemmas. Both lingering death and active killing are undesirable, but palliative interventions can hasten death. We investigated what staff on our neonatal unit thought were the limits of acceptable practice and why. We administered a structured interview to elucidate their views, and asked them to justify their answers. The interviews were analysed quantitatively and qualitatively. A total of 25 participants (15 nurses and 10 doctors) were recruited. 80% (...) emphasized the importance of pain relief following withdrawal, 60% mentioned meeting parental needs at that time. 76% agreed that death can be a desired consequence of withdrawal, yet 52% felt that death should never be hastened. 96% felt that morphine is acceptable after withdrawal, and 72% would give a higher than normal dose if necessary. 56% would stop paralysis at extubation but not reverse it, while 24% would continue paralysis. 16% would consider a drug that ended life instantly in some cases. A wide variety of views emerged, but there were two main positions, a cautious majority, and a more proactive minority. Apparent contradictions within the majority position could be explained using the doctrine of double effect and the acts and omissions distinction. (shrink)

Rustin Cohle, the protagonist of the first season of True Detective, declares that he is "in philosophical terms, a pessimist". The doctrine of "pessimism" espoused by Rust is remarkably similar to the view adumbrated by Arthur Schopenhauer, who holds that conscious life (both human and nonhuman animal) involves a tremendous amount of suffering that is essentially built into the structure of the world and there is no Creator (providential or otherwise) to redeem all of this suffering, by, say, punishing the (...) wicked and rewarding the good. Rust finds some grounds for hope, and he chooses to continue on the path of compassion and justice, the path to try to improve the world. This prompts the question of whether he ever really embraced suicide in principle, and just lacked the constitution to pull it off, or whether, like Schopenhauer, he perhaps always found the intellectual grounds for such a radical decision to be shaky. (shrink)