A lot of medical procedures can be justified in terms of the number of quality-adjusted life-years (QALYs) they can be expected to generate; that is, the number of extra years that the procedure will provide, with the quality of life during those extra years factored in. QALYs are a crude tool, but good enough for many decisions. Notoriously, however, they cannot justify spending any money on terminal care (and indeed on older people in general). In this paper I (...) suggest a different way of construing ‘quality’ (as meaningfulness rather than physical comfort) and ‘life’ (as both backward-looking and forward-looking), so that the terminal patient's efforts to find meaning in his life could in principle generate plenty of ‘retrospective QALYs’ to justify funding. (shrink)

Palliative care is a recent branch of health care. The doctors, nurses, and other professionals involved in it took their inspiration from the medieval idea of the hospice, but have now extended their expertise to every area of health care: surgeries, nursing homes, acute wards, and the community. This has happened during a period when patients wish to take more control over their own lives and deaths, resources have become scarce, and technology has created controversial life-prolonging treatments. (...) Palliative care is therefore faced with more ethical problems that other areas of health care. This book, by a clinician, teacher, and writer on health care ethics, has been written to provide all those who care for the terminally ill--doctors, nurses, social workers, clergymen, physiotherapists--with the concepts and principles which will assist them with difficult decisions. It challenges many received doctrines of palliative care, but its well-illustrated central theme is that technical expertise must be controlled by humane, non-technical judgments. (shrink)

The breaking of bad news in a hospital setting, particularly to patients in a terminal condition, highlights some complex and often emotive ethical issues for nurses. One theory that examines the way in which individuals react to bad news such as a terminal illness, is the theory of awareness contexts. However, this theory may be limited by failing to recognize the complexity of the situation and the ethical issues involved for nurses caring for terminally ill patients. Furthermore, contexts (...) of awareness are influenced to a much greater extent by relationships with nurses than simply by the delivery of medical information. Even when information is given to the client and the family, the nurse is involved in helping them to know the meaning of this information. In a hospital, the nurse is faced with emotional demands by clients, families and colleagues, complex issues of advocacy, and professional boundaries and responsibilities. It is the author’s wish to examine the reality of clinical practice for nurses, thus further extending the theory of awareness contexts. (shrink)

The nursing profession in Germany is facing a public debate on legal and ethical questions concerning euthanasia on request and physician-assisted suicide. However, it seems questionable if the profession itself, individual nurses or the professional associations are prepared to be involved in such a public debate. To understand this hesitation, the present situation is considered in the light of the tradition and history of professional care in Germany. Obedience to medical as well as to religious authorities was long part (...) of nurses' professional identity, but is no longer relevant. The lack of reflection and discussion on how to take a balanced view of ethical and political questions concerning nursing, and the role and responsibility of nurses in end-of-life decisions and situations of caring for dying people are discussed using the situation of nurses in the Netherlands as a comparison. (shrink)

This title offers an ethical framework for end-of-life decision making in healthcare settings. Its objective is to foster and support ethically and legally sound clinical practice in end-of-life treatment and care in Ireland.

Objectives: Treatment decisions in ethically complex situations are known to depend on a physician's personal characteristics and medical experience. We sought to study variability in decisions to withdraw or withhold specific life-supporting treatments in terminal care and to evaluate the association between decisions and such background factors.Design: Readiness to withdraw or withhold treatment options was studied using a terminal cancer patient scenario with alternatives. Physicians were asked about their attitudes, life values, experience, and training; sociodemographic data were (...) also collected.Setting: Finnish physicians, postal survey.Survey sample: Five hundred general practitioners, 300 surgeons, 300 internists, and 82 oncologists.Results: Treatments most often forgone were blood transfusion and thrombosis prophylaxis . Least willingly abandoned were intravenous hydration and supplementary oxygen . Female doctors were less likely to discontinue thrombosis prophylaxis and supplementary oxygen , but more readily x ray and laboratory examinations. Young doctors were more likely to continue antibiotics , thrombosis prophylaxis , supplementary oxygen and laboratory tests . Oncologists comprised the specialty most ready to forgo all studied treatments except antibiotics and blood transfusion. The family's wishes significantly increased treatment activity. Young and female practitioners and oncologists were most influenced by family appeal. Advance directives made decisions significantly more reserved and uniform. Different factors in the physician's background were found to predict decisions to withdraw antibiotics or IV hydration.Conclusion: The considerable variation observed in doctors' decisions to forgo specific life-sustaining treatments was seen to depend on their personal background factors. Experience, supervision, and postgraduate education seemed to be associated with more reserved treatment decisions. To increase the objectivity of end of life decisions, training, and research are of prime significance in this ethically complex area of medicine. (shrink)

Human death is a mystery. Although scientists have identified the criteria, states, and signs of biological death, undoubtedly the issues of dying and death have a wider meaning. In this book, the authors present current research in the study of the ethical issues, practices and challenges of end-of-life care. Topics discussed include a spiritual perspective of end-of-life experiences; a veterinary oncologist's interprofessional crossover perspective of euthanasia for terminal patients; diabetes and end-of-life care; helping families to cope after (...) the death of a loved one; multidimensional aspects of nursing care for dying patients; spirituality at the end-of-life; challenges of promoting end-of-life care in residential care homes in Hong Kong; and the current situation and challenges of home end-of-life care for the elderly in Japan. (shrink)

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares (...) poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. (shrink)

: This paper examines the main Jewish sources relevant to end-of-life ethics, two Talmudic stories, the early modern code of law (Shulhan Aruch), and contemporary Halakhaic (religious law) responsa. Some Orthodox rabbis object to the use of artificial life support that prolongs the life of a dying patient and permit its active discontinuation when the patient is suffering. Other rabbis believe that every medical measure must be taken in order to prolong life. The context of the discussion is the (...) recent release of the "Steinberg Report," which proposes a law regulating end-of-life issues in Israel. It is argued that the Orthodox rabbis base their views on a strongly positivist concept of the religious law. The rabbis deliberate the law as a manifestation of the will of God and try to stretch the law as much as possible in order to benefit the patient, even when it is good for the patient to die. Direct and active actions that kill are prohibited; certain forms of passive euthanasia and contrivances that terminate life support without needing direct human action are accepted. (shrink)

This article deals with making decisions about starting terminal care. The results are part of a larger survey on nurses’ conceptions of terminal care in community health centres in Finland. The importance, frequency and timing of decision making as well as communication and the number of investigations and procedures carried out are examined. The relationship between decision making and the size of a health centre’s catchment population is also discussed. The results make it possible to compare (...) the current situation in Finland with the national law on patients’ rights. The sample consisted of 328 nurses who worked on the wards of 32 community health centres. The data were collected by means of a structured questionnaire and processed with the Statistical Package for Social Sciences software. The nurses agreed that explicit decision making and documentation about starting terminal care were necessary, but it was highlighted that the practice had many shortcomings. Decisions were often made too late and the patients were not always aware of their situation; family members and the nursing staff were mostly better informed. It was noted that many investigations and other procedures were carried out on terminally ill patients, often at the request of family members. Decision making was found to have some relationship to the size of a health centre’s catchment area. (shrink)

Background There are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in Toronto, Ontario, Canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto Joint (...) Centre for Bioethics. The panel was asked the question, what do you think are the top ten ethical challenges that Canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the Delphi process and consensus was reached after three rounds. Discussion The top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions. The second highest ranked challenge was waiting lists. The third ranked challenge was access to needed resources for the aged, chronically ill, and mentally ill. Summary Although many of the challenges listed by the panel have received significant public attention, there has been very little attention paid to the top ranked challenge. We propose several steps that can be taken to help address this key challenge. (shrink)

Beginning with a focus on the ethical foundations of caregiving in health and expanding towards problems of ethics and justice implicated in a range of issues, this book develops and expands the notion of care itself and its connection to practice. Organised around the themes of culture as a restraint on caregiving in different social contexts and situations, innovative methods in healthcare, and the way in which culture works to position care as part of a rhetorical approach (...) to dependency, responsibility, and justice, The Ethics of Carepresents case studies examining institutional responses to end-of-life issues, the notion of informed consent, biomedicine, indigenous rights and postcolonialism in care and theoretical approaches to the concept of care. Offering discussions from a variety of disciplinary approaches, including sociology, communication, and social theory, as well as hermeneutics, phenomenology, and deconstruction, this book will appeal to scholars across the social sciences with interests in healthcare, medicine, justice and the question of how we think about care as a notion and social form, and how this is related to practice. (shrink)

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)

Those are the words of Pope John Paul II, speaking in March 2004 to an international congress held in Rome. The conference was on "Life-sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas," and it was organized by the World Federation of Catholic Medical Associations and the Pontifical Academy for Life. The pope was able to cut through all the ethical dilemmas. Although he acknowledged that a patient in a persistent vegetative state, or PVS, "shows no evident sign of (...) selfawareness or of awareness of the environment, and seems unable to interact with others or to react to specific stimuli," he said that they should be kept alive indefinitely. Such patients, he insisted, "retain their human dignity in all its fullness" and "the loving gaze of God the Father continues to fall upon them." For this reason, he said, it is obligatory to continue to provide them with food and water, even if this can only be done through a tube. The pope added that to withdraw the tube, knowing that it will lead to the death of the patient, is "euthanasia by omission.". (shrink)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated (...) the different needs of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients’ quality of death. (shrink)

Essays examine various sides of medical ethics issues such as euthanasia, organ transplants, and living wills.

Human-centered explainable AI (HCXAI) advocates for the integration of social aspects into AI explanations. Central to the HCXAI discourse is the Social Transparency (ST) framework, which aims to make the socio-organizational context of AI systems accessible to their users. In this work, we suggest extending the ST framework to address the risks of social misattributions in Large Language Models (LLMs), particularly in sensitive areas like mental health. In fact LLMs, which are remarkably capable of simulating roles and personas, may lead (...) to mismatches between designers' intentions and users' perceptions of social attributes, risking to promote emotional manipulation and dangerous behaviors, cases of epistemic injustice, and unwarranted trust. To address these issues, we propose enhancing the ST framework with a fifth 'W-question' to clarify the specific social attributions assigned to LLMs by its designers and users. This addition aims to bridge the gap between LLM capabilities and user perceptions, promoting the ethically responsible development and use of LLM-based technology. (shrink)

This article applies the anthropological concept of liminality to reconceptualize palliative care ethics. Liminality possesses both spatial and temporal dimensions. Both these aspects are analyzed to provide insight into the intersubjective relationship between patient and caregiver in the context of palliative care. Aristotelian practical wisdom, or phronesis, is considered to be the appropriate model for palliative care ethics, provided it is able to account for liminality. Moreover, this article argues for the importance of liminality for (...) providing an ethical structure that grounds the doctrine of double effect and overcomes the impasse of phronesis in the treatment of the terminally ill. (shrink)

Despite advances in palliative care, some patients still suffer significantly at the end of life. Terminal Sedation (TS) refers to the use of sedatives in dying patients until the point of death. The following limits are commonly applied: (1) symptoms should be refractory, (2) sedatives should be administered proportionally to symptoms and (3) the patient should be imminently dying. The term ‘Expanded TS’ (ETS) can be used to describe the use of sedation at the end of life outside (...) one or more of these limits.In this paper, we explore and defend ETS, focusing on jurisdictions where assisted dying is lawful. We argue that ETS is morally permissible: (1) in cases of non-refractory suffering where earlier treatments are likely to fail, (2) where gradual sedation is likely to be ineffective or where unconsciousness is a clinically desirable outcome, (3) where the patient meets all criteria for assisted dying or (4) where the patient has greater than 2 weeks to live, is suffering intolerably, and sedation is considered to be the next best treatment option for their suffering.While remaining two distinct practices, there is scope for some convergence between the criteria for assisted dying and the criteria for ETS. Dying patients who are currently ineligible for TS, or even assisted dying, should not be left to suffer. ETS provides one means to bridge this gap. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad that also includes the parents or guardians. The multifactorial (...) nature of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

This article is an attempt by Japanese physicians to introduce the practice patterns and moral justification of Japanese critical care to the world. Japanese health care is characterized by the fact that the fee schedule does not reward high technology medicine, such as surgery and critical care. In spite of the low reimbursement, our critical care practice pattern is characterized by continuing futile treatment for terminal patients in the intensive care unit (ICU). This apparently (...) wasteful practice can be explained by fundamental Japanese cultural values, social factors in Japan, the availability of extensive insurance coverage, physicians' psychological factors, lack of cost-benefit considerations and the pragmatic approach the Japanese take to situations. We attempt to make some brief suggestions regarding the improvement of our critical care practices. Although we can not fully present quantitative data to support our argument, this article represents our real-world approaches to the ethical issues in the ICU in Japan. (shrink)

Hospice is the premiere end of life program in the United States, but its requirement that patients forgo disease-directed therapies and that they have a prognosis of 6 months or less means that it serves less than half of dying patients and often for very short periods of time. Palliative care offers careful attention to pain and symptom management, added support for patients and families, and assistance with difficult medical decision making alongside any and all desired medical treatments, but (...) it does not include a comprehensive system of care as is provided by hospice. The practice of palliative care and hospice is filled with sometimes overt (requests for hastened death in an environment where such acts are legally prohibited) and other times covert (the delay in palliative care referral because the health care team believes it will undermine disease directed treatment) ethical issues. The contributors to this volume use a series of case presentations within each chapter to illustrate some of the palliative care and hospice challenges with significant ethical dimensions across the three overarching domains: 1) care delivery systems; 2) addressing the many dimensions of suffering; and 3) difficult decisions near the end of life. The contributors are among the most experienced palliative care, hospice and ethics scholars in North America and Western Europe. Each has been given relatively free reign to address what they feel are the most pressing ethical challenges within their domain, so a wide range of positions and vantage points are represented. As a result, the volume provides a very diverse ethical exploration of this relatively young field that can deepen, stretch, and at times confront any simple notion of the challenges facing patients, their families, professional caregivers, and policy makers. (shrink)

The use of terminal sedation to control theintense discomfort of dying patients appearsboth to be an established practice inpalliative care and to run counter to the moraland legal norm that forbids health careprofessionals from intentionally killingpatients. This raises the worry that therequirements of established palliative care areincompatible with moral and legal opposition toeuthanasia. This paper explains how thedoctrine of double effect can be relied on todistinguish terminal sedation from euthanasia. The doctrine of double effect is rooted (...) inCatholic moral casuistry, but its applicationin law and morality need not depend on theparticular framework in which it was developed. The paper further explains how the moral weightof the distinction between intended harms andmerely foreseen harms in the doctrine of doubleeffect can be justified by appeal to alimitation on the human capacity to pursue good. (shrink)

Terminally ill people might want to discuss the options they have of hastening their deaths with their psychologists who should therefore know the law that regulates euthanasia in the jurisdictions where they practice. The legal, and therefore ethical, situation that influences psychologists’ position and terminally ill people’s options, however, differs notably across jurisdictions. Our aim is to provide a brief moral-legal historical context that explains how the law reform processes in different jurisdictions created these different legal contexts and options that, (...) in turn, influence psychologists’ ethical position. We conclude by considering 8 specific ethical issues at a conceptual level that might confront psychologists irrespective of where they practice. (shrink)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? That question is the focus of this essay. Put another way: relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons (...) who are terminally ill have? On the one hand, we might see the terminally ill as being among the “medically least well off” and therefore deserving very high priority. On the other hand, we might see them as squandering vast medical resources for marginal medical benefits, thereby denying needed resources to others who would benefit much more. We begin the essay by making a number of morally relevant distinctions with regard to the category of “being terminally ill.” We note, given contemporary medicine, that individuals may be terminally ill several times in the course of a life. Not all such circumstances make equal just claims to needed health care. We also note that our conceptions of health care justice are ultimately incapable of making very fine-grained, morally justified rationing judgments in complex medical circumstances. We conclude that we must finally rely upon fair processes of rational democratic deliberation to articulate such judgments for our own future, possibly terminally ill selves, thereby undercutting the rhetoric of “death panels.”. (shrink)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? This is the question that will be the focus of this essay. Another way of asking our question would be the following: Relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how (...) high a priority ought the health care needs of persons who are terminally ill have? Should any of the health care needs of the terminally ill be assigned very low priority? Or should all their health care needs be assigned the highest priority? If we reflect a bit, we will find ourselves greatly internally conflicted. On the one hand, the “caring” side of our moral self might see terminally ill individuals as being among the “medically least well off,” and therefore, deserving virtually any medical resources that will yield any degree of good for them. (shrink)

"The cases are presented in a concise and interesting manner... highlights the emerging consciousness of the importance of the contractual arrangement between physician and patient... " --Journal of the American Medical Association "The cases presented are interesting ones, and the commentaries are uniformly lucid.... Highly recommended... " --Religious Studies Review "Cohen contributes a well-selected collection of cases and commentaries which are presented in a crisp style... it is likely to have a real impact." --Ethics Twenty-six reports based on actual (...) cases with expert commentary that illuminate the ethical, medical, legal, and psychological contours of dilemmas surrounding termination of treatment decisions. Cases involve patients, families, physicians, nurses, lawyers, and health care administrators. A companion volume to the Hastings Center's Guidelines. See Guidelines for ad quotes when advertising both books. (shrink)

This book identifies and explores ethical themes in the structure and delivery of hospice care in the United States. As the fastest growing sector in the US healthcare system, in which over forty percent of patients who die each year receive care in their final weeks of life, hospice care presents complex ethical opportunities and challenges for patients, families, clinicians, and administrators. Thirteen original chapters, written by seventeen hospice experts, offer guidance and analysis that promotes best ethical (...) practice for hospice organizations and professionals. The book addresses common questions and issues faced by those who work in hospice care, a dynamic movement that, in only 30 years, has shifted from an all-volunteer care alternative at the end of life to a highly regulated industry in which over half of providers are for-profit enterprises in a very competitive health care marketplace. The chapters show how the history and philosophy of hospice care can inform the values and composition of care teams, the operations of inpatient units, and access to care for pediatric and long-term care populations. Various chapters propose frameworks for deliberating organizational approaches to ethical questions in changing regulatory and legal environments, including a model for hospice ethics committees. The final chapter outlines an expanded model of hospice as a community based, interdisciplinary, and holistic form of palliative care emphasizing advance planning, case management, and a flexible spectrum of services. This model can serve as a centrepiece for a new quality of life and social support approach, not only to terminal care, but also long-term care during the later stages of chronic illness and fraility. (shrink)

Background Discussions on ethical aspects of life-and-death decisions within the hospital are often made in plenary. The prehospital physician, however, may be faced with ethical dilemmas in life-and-death decisions when time-critical decisions to initiate or refrain from resuscitative efforts need to be taken without the possibility to discuss matters with colleagues. Little is known whether these considerations regarding ethical issues in crucial life-and-death decisions are documented prehospitally. This is a review of the ethical considerations documented in the prehospital medical records (...) of patients in a Danish prehospital setting for whom the decision to resuscitate or not was made at the scene. Methods The study is based on discharge summaries of all patients subjected to crucial life-and-death decisions by the Mobile Emergency Care Unit in Odense in the years 2010 to 2014. The medical records with possible documentation of ethical issues were independently reviewed by two philosophers in order to identify explicit ethical or philosophical considerations pertaining to the decision to resuscitate or not. Results In total, 1275 patients were either declared dead at the scene without exhibiting layman’s reliable signs of death or admitted to hospital following resuscitation. In a total of 62 patients, 85 specific ethical issues related to resuscitation were documented. The expressions of the ethical considerations were generally vague or unclear and almost exclusively concerned the interests of the patient and not the relatives. In the vast majority of cases where an ethical content was identified, the ethical considerations led to a decision to terminate treatment. Conclusions A strengthened practice of documenting ethical considerations in prehospital life-and-death decision-making in the patient’s medical records is required. We suggest that a template be implemented in the prehospital medical records describing the basis for any ethical decisions. This template should contain information regarding the persons involved in the deliberations and notes on ethical considerations. The documentation should include considerations concerning the patient’s end-of-life wishes, the estimations of the quality of life before and after the incident, and a summary of other ethical concerns taken into account, such as the integrity of the patient and frame of mind of relatives. (shrink)

A patient with end-stage motor neurone disease was admitted for hospice care with worsening bulbar symptoms. Although he initially walked onto the ward he became very distressed and asked for sedation. After much discussion, this man was deeply sedated, and after some harrowing days, died. Was it right to provide terminal sedation? What should the threshold be for such treatment? How should our personal reservations affect how we approach the distressed patient in an end-of-life situation?

Not everyone finds a in suffering. Indeed, even those who do subscribe to this interpretation recognize the responsibility of each individual to show not only sensitivity and compassion but render assistance to those in distress. Pharmacologic hypnosis, morphine intoxication, and terminal sedation provide their own type of medical to the terminally ill patient suffering unremitting pain. More and more states are enacting legislation that recognizes this need of the dying to receive relief through regulated administration of controlled substances. Wider (...) legislative recognition of this need would go far toward allowing physicians, in the exercise of their reasonable medical judgment, to administer a range of narcotics and barbiturates to the terminally ill without fear of legal sanctions. Sadly, social attitudes and governmental concerns about the spread of drug addiction provide an undeniable policy nexus that impedes unduly a rational approach or exception for the treatment of pain experienced by the dying. (shrink)

This research explored the ethical issues that nurses reported in the process of elaboration and further disclosure after an initial diagnosis of a terminal illness had been given. One hundred and six hospice nurses in Norway and Denmark completed a questionnaire containing 45 items of forced-choice and open-ended questions. This questionnaire was tested and used in three countries prior to this study; for this research it was tested on Danish and Norwegian nurses. All respondents supported the ethics of (...) ongoing disclosure to terminally ill patients based on ethical principles embedded in their country’s Patients’ Rights Acts. Truth, as an intrinsic value, proved foundational to patient autonomy, the most frequent ethical principle these nurses reported to justify their ethical position on information disclosure to terminally ill people. Telling the truth about a diagnosis was not the end of ethics in hospice care, but rather the beginning because what occurs ethically in dealing with prognosis issues became central to these hospice nurses, the patients and their families. Coupled with truth-telling, compassionate interaction and care become extensions of patients’ rights. (shrink)

An individual’s right to refuse life-sustaining treatment is a fundamental expression of patient autonomy; however, supporting this right poses ethical dilemmas for healthcare providers when the patient has attempted suicide. Emergency physicians encounter patients who have attempted suicide and are likely among the first medical providers to face the dilemma of honoring the patient’s DNR or intervening to reverse the effects of potentially fatal actions. We illustrate this issue by introducing a case example in which the DNR of a terminally (...) ill woman was not honored because the cause of her cardiac arrest was suicide. We argue that although a terminal diagnosis should change the way health care providers respond to a suicide attempt, many of the theoretical underpinnings for how one should treat suicide attempts—especially the criterion of external reasonability, that is the action to withhold or withdraw life-sustaining measures is reasonable independent of the precipitating event—are common to all situations :3–12, 2013). The presumption that patients who attempt suicide lack capacity due to acute mental illness is flawed because it fails to account for a competent individual’s reasonable preference to not be forced to live in an unbearable, terminal condition. In states without legislation allowing physician aid in dying, patients and providers must grapple with these limitations on a case-by-case basis. In cases where the patient has a limited life expectancy and there is not concern for psychiatric illness as the primary cause of the suicidal action, we argue that the negative right to refuse life-sustaining treatment should prevail. (shrink)

As palliative care develops across many of the countries of Europe, we find that it continues to raise important ethical challenges. Palliative care practice requires ethical sensitivity and understanding. At the same time the very existence of palliative care calls for ethical explanation. Ethics and palliative care meet over some vital issues: 'the good death', sedation at the end of life, requests for euthanasia, futile treatment, and the role of research. Yet palliative care appears (...) uncertain about its goals and there is evidence that its ethical underpinnings are changing. Likewise, the moral problems of palliative care are only partly served by the four 'principles' of modern bioethics. This innovative book, with contributions by clinicians, ethicists, philosophers and social scientists, provides the first ever picture of palliative care ethics in the European context. It will be of interest to those involved in the delivery and management of palliative care services, as well as to students and researchers. (shrink)

BackgroundIn cancer care, do not resuscitate orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. Previous (...) studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care.MethodsA qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants.ResultsThe participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work.ConclusionThe study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and “natural” death with dignity for their dying patients. A preference for the expression “allow for natural death” instead of the traditional term “do not resuscitate” was found in the material. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. Public (...) debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

Effective palliative care that rests on a sound ethical foundation requires ongoing discussions about patient and family values and preferences. This is especially important when addressing care at end-of-life including artificial nutrition and hydration, withdrawal of life-sustaining therapies and palliative sedation as well as requests for assistance in hastening death. The eighth volume in the HPNA Palliative Nursing Manuals series, Legal and Ethical Aspects of Palliative Care, provides an overview of critical communication skills and formal organizational mechanisms, (...) such as ethics committees and interdisciplinary rounds, required for decisions in ethical dilemmas which respect diversity in the views of colleagues, as well as patients. The content of the concise, clinically focused volumes in the HPNA Palliative Nursing Manuals series is one resource for nurses preparing for specialty certification exams and provides a quick-reference in daily practice. (shrink)

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care (...) Ethics Consultants, the American Society for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here. (shrink)