Truth-telling for terminally ill patients is a challenging ethical and social issue for Chinese health care professionals. However, despite the existence of ethical and moral standards for nurses, they frequently encounter moral dilemmas when making decisions about truth-telling to patients with end-stage diseases in China. This article aims to provide ethical strategies for clinical nurses in China regarding truth-telling decisions for terminally ill patients on the basis of their individual autonomy. This article first presents a common case scenario in (...) China and then critically discusses ethical issues related to ethical principles and philosophical theories. The aim is to provide the much needed strategy for truth-telling for nurses who are terminally ill rather than to focus on attitudes toward disclosure. This article focuses on nursing morality, ethics, norms, and philosophy in health care and discusses countermeasures taken by nurses in truth-telling decision-making in combination with Chinese Confucian culture. The analysis identifies key ethical strategies tailored to Chinese nurses’ practices, emphasizing individual autonomy, cultural sensitivity, and family dynamics in truth-telling decisions. The complexity of end-of-life illness requires Chinese nurses to strengthen the communication training needed to deliver bad news, as well as critical and autonomous thinking and good communication skills when implementing patient- and family-centered care, to achieve true delivery of bad news, thereby increasing patient autonomy and promoting more successful collaboration among patients, families, and providers. To improve the quality of care. Chinese nurses should integrate ethical principles with Confucian values to enhance patient-centered communication, respecting autonomy while adapting to cultural nuances in end-of-life care. (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)

In September 1998 the Bundesrztekammer, i.e., the German Medical Association, published new principles concerning terminal medical care. Even before publication, a draft of these principles was very controversial, and prompted intense public debate in the mass media. Despite some of the critics' suspicions that the principles prepared the way for liberalization of active euthanasia, euthanasia is unequivocally rejected in the principles. Physician-assisted suicide is considered to violate professional medical rules. In leaving aside some of the notions customarily used (...) in the euthanasia debate, e.g., passive euthanasia, the principles emphasize the obligation of physicians to offer and the right of patients to receive palliative care. The principles explicitly list modalities of basic treatment that are indispensable in all cases, such as the obligation to satisfy hunger and thirst. This statement is meant to resolve the dispute on nutrition and hydration at the end of life, as it shifts the focus of care from maintaining physiological parameters to satisfying subjective needs. For patients in a persistent vegetative state, artificial feeding is held to be obligatory. Yet, the principles make reference to recent German jurisdiction which permit the stopping of artificial feeding if it is in accordance with the patient's presumed will. Additionally, the wording concerning this issue is found to remain unclear. Patients' autonomy is strengthened by explicitly welcoming advance directives as a means to ascertain patients' wills. The principles mark some changes compared to earlier documents. They deserve careful analysis and should be considered in the international debate on issues concerning the end of life. (shrink)

How is a terminally ill patient treated by the surrounding people in the U.S. and Japan? How does a terminally ill patient decide on his or her own treatment? These questions will be examined in a study of intensive medical care, received by a terminally ill Japanese cancer patient in the U.S. and Japan. This casereflects the participant observation by a Japanese anthropologist for about 8 years in the United States and Japan on one patient who was hospitalized in (...) both countries on and off for about eight years. The objective of this study is to illuminate the different concept of personhood between the U.S. and Japan that appeared in different cultural practices of both countries and in the subject’s own decision making process. The significant differences appeared between theU.S. and Japan in the concepts of (1) science, (2) suffering, (3) Power of Attorney and Doisho (Consent Form), and (4) organized care. The interpretation of such differences indicates that seemingly universal practices across countries suggest cultural specific concepts and their management. Therefore, ethical norms appeared differently accordingly to each country. (shrink)

Torbjörn Tännsjö has argued that the practice of palliative, or terminal, sedation can be distinguished from the practice of euthanasia in a morally relevant way. He seeks to develop a coherent conceptual model for those who accept the sanctity-of-life doctrine, affirm the ethical permissibility of palliative/terminal sedation, and reject various forms of euthanasia. The author argues that Tännsjö has not sufficiently distinguished the practices of palliative/terminal sedation and euthanasia in a morally relevant way for those who accept (...) sanctity-of-life values in end-of-life health care. His argument is a philosophical critique of the soundness of Tännsjö’s conceptual model. With respect to moral theology, the author claims that, in Tännsjö’s attempt to make his case, he uses the wrong conceptual tools, and the tools he does use, he uses wrongly. National Catholic Bioethics Quarterly 15.2 : 287–301. (shrink)

In this book, an international group of philosophers, economists and theologians focus on the relationship between justice, luck and responsibility in health care. Together, they offer a thorough reflection on questions such as: How should we understand justice in health care? Why are health care interests so important that they deserve special protection? How should we value health? What are its functions and do these make it different from other goods? Furthermore, how much equality should there be? (...) Which inequalities in health and health care are unfair and which are simply unfortunate? Which matters of health care belong to the domain of justice, and which to the domain of charity? And to what extent should we allow personal responsibility to play a role in allocating health care services and resources, or in distributing the costs? With this book, the editors meet a double objective. First, they provide a comprehensive philosophical framework for understanding the concepts of justice, luck and responsibility in contemporary health care; and secondly, they explore whether these concepts have practical force to guide normative discussions in specific contexts of health care such as prevention of infectious diseases or in matters of reproductive technology. Particular and extensive attention is paid to issues regarding end-of-life care. (shrink)

Que signifie " mourir dans la dignité "? La dignité est-elle affaire de convenance personnelle? Doit-il y avoir une " exception d'euthanasie "? À quoi servent les soins palliatifs? La philosophie nous apprend-elle quelque chose sur la mort? Telles sont les principales questions, d'une actualité brûlante pour la plupart, auxquelles ce recueil apporte quelques éléments de réponse. L'auteur chemine en compagnie d'Epicure, de Kierkegaard, Levinas et bien d'autres. Qu'il analyse un avis du Comité national d'éthique ou expose la pensée de (...) Jankélévitch, son propos reste accessible à " l'honnête homme ". Et prodigue une réflexion éclairée sur " l'impensable " de la mort. (shrink)

Many advances in public health and medical technology have contributed to the improved wellbeing and overall longevity of Americans. Such benefits, however, have been offset by a change in the nature and prolongation of the dying process. Daniel Callahan offers a challenge to caregivers in his observation of violent death by technological attenuation, and he sets an agenda to identify a more appropriate approach to the needs of the dying.Over the past quarter century, hospice has increasingly been used as a (...) resource for care at the end of life. However, according to 1995 estimates by the National Hospice Organization, hospice care presently accounts for only about 15 percent of the care of terminally ill patients in the United States. We will review issues of access and use of hospice services and examine the various institutional, professional, societal, and cultural barriers to hospice principles of care, and consider various options to promote optimal care at the end of life. (shrink)

In this original and compelling book, Jeffrey P. Bishop, a philosopher, ethicist, and physician, argues that something has gone sadly amiss in the care of the dying by contemporary medicine and in our social and political views of death, as shaped by our scientific successes and ongoing debates about euthanasia and the "right to die"--or to live. __The Anticipatory Corpse: Medicine, Power, and the Care of the Dying__, informed by Foucault's genealogy of medicine and power as well as (...) by a thorough grasp of current medical practices and medical ethics, argues that a view of people as machines in motion--people as, in effect, temporarily animated corpses with interchangeable parts--has become epistemologically normative for medicine. The dead body is subtly anticipated in our practices of exercising control over the suffering person, whether through technological mastery in the intensive care unit or through the impersonal, quasi-scientific assessments of psychological and spiritual "medicine." The result is a kind of nihilistic attitude toward the dying, and troubling contradictions and absurdities in our practices. Wide-ranging in its examples, from organ donation rules in the United States, to ICU medicine, to "spiritual surveys," to presidential bioethics commissions attempting to define death, and to high-profile cases such as Terri Schiavo's, __The Anticipatory Corpse__ explores the historical, political, and philosophical underpinnings of our care of the dying and, finally, the possibilities of change. A ground-breaking work in bioethics, this book will provoke thought and argument for all those engaged in medicine, philosophy, theology, and health policy. "With extraordinary philosophical sophistication as well as knowledge of modern medicine, Bishop argues that the body that shapes the work of modern medicine is a dead body. He defends this claim decisively with with urgency. I know of no book that is at once more challenging and informative as __The Anticipatory Corpse. __To say this book is the most important one written in the philosophy of medicine in the last twenty-five years would not do it justice. This book is destined to change the way we think and, hopefully, practice medicine." --_Stanley Hauerwas, Duke Divinity School _ "Jeffrey Bishop carefully builds a detailed, scholarly case that medicine is shaped by its attitudes toward death. Clinicians, ethicists, medical educators, policy makers, and administrators need to understand the fraught relationship between clinical practices and death, and __The Anticipatory Corpse __is an essential text. Bishop's use of the writings of Michel Foucault is especially provocative and significant. This book is the closest we have to a genealogy of death." --_Arthur W. Frank, University of Calgary _ "Jeffrey Bishop has produced a masterful study of how the living body has been placed within medicine's metaphysics of efficient causality and within its commitment to a totalizing control of life and death, which control has only been strengthened by medicine's taking on the mantle of a bio-psycho-socio-spiritual model. This volume's treatment of medicine's care of the dying will surely be recognized as a cardinal text in the philosophy of medicine." --_H. Tristram Engelhardt, Jr., Rice University, Baylor College of Medicine_. (shrink)

Recenzowana monografia naukowa dotyczy wybranych, niezwykle ważnych kwestii społecznych i etycznych, związanych z poszczególnymi etapami życia ludzkiego: jego początkiem, trwaniem i śmiercią. Składa się z dziewięciu artykułów, które łącznie tworzą szeroką panoramę współczesnych problemów bioetycznych. […] Jest przykładem ich dobrego diagnozowania, aktualizowania refleksji nad nimi i proponowania konkretnych rozwiązań, które odwołują się – co bardzo cenne – do rodzimych przykładów. […] Adresatami publikacji mogą być zarówno osoby profesjonalnie związane z szeroko rozumianą służbą zdrowia, studenci kierunków medycznych, jak i pacjenci oraz (...) ich rodziny, a także osoby zawodowo organizujące wsparcie w trudnych sytuacjach. Publikacja zainteresuje także osoby, które poszukują refleksji nad społecznie ważnymi kwestiami bioetycznymi, ukazanymi w perspektywie personalistycznej. Z recenzji ks. dr. hab. Zbigniewa Wanata, prof. UMK Monografia zawiera szereg interesujących tekstów analizujących dylematy moralne związane z początkiem i końcem ludzkiego życia. Poruszane zagadnienia są ważne i aktualne. W części pierwszej znajdują się opracowania dotyczące kwestii prenatalnych i okołoporodowych, w części drugiej – kwestii terminalnych, a na końcu tekst zwieńczający, dotyczący pojęcia sumienia […] Szczególnie cenne wydają się teksty prezentujące obszerne wyniki badań własnych (np. opieki nad dziećmi z zespołem Downa) i funkcjonowanie niedawno powstałych instytucji (jak hospicja perinatalne) albo opisujące proponowane procedury postępowania w praktyce (np. w stosunku do osób umierających). Inne teksty, nawet jeśli dotyczą zagadnień znanych (np. diagnostyki prenatalnej lub opieki nad ciężarnymi niepełnosprawnymi), omawiają je w sposób porządkujący dotychczasową wiedzę. Powyższe sprawia, że monografię można uznać za dzieło oryginalne. […] Wśród Autorów poszczególnych rozdziałów znajdują się osoby rozpoznawalne w środowisku medycznym i bioetycznym, co sprawia, że publikacja powinna cieszyć się zainteresowaniem w tych kręgach, a sformułowane w niej postulaty mogą mieć wartość aplikacyjną. Z recenzji dr. hab. med. Jakuba Pawlikowskiego, prof. UKSW. (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)

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)

The response to feeding needs in advanced dementia patients is a subject of ethical inquiry. Advanced dementia is the debilitating result of a range of neurodegenerative diseases. As this terminal illness progresses, patients develop mild to severe dysphagia that can make swallowing difficult. Of the two available options, artificial tube feeding or oral hand feeding, an estimated one-third of these patients will receive artificial tube feeding. However, observational studies have failed to validate the clinical benefits of tube feeding. Ethics (...) of care, the feminist philosophical perspective, and Ubuntu philosophy offer arguments for the choice of oral hand-feeding as a preferrable first option by caregivers as far as possible. These moral theories acknowledge that human beings can be dependent for long periods, mostly early and later years of life. Both views reflect an approach that draws people into a system of interdependent caring relationships. They encourage hand feeding as a way of exhibiting solidarity and respecting human dignity even at the end of life. (shrink)

This practical guide summarizes the principles of working with dying patients and their families as influenced by the commoner world religions and secular philosophies. It also outlines the main legal requirements to be followed by those who care for the dying following the death of the patient. The first part of the book provides a reflective introduction to the general influences of world religions on matters to do with dying, death and grief. It considers the sometimes conflicting relationships between (...) ethics, religion, culture and personal philosophies and how these differences impact on individual cases of dying, death and loss. The second part describes the general customs and beliefs of the major religions that are encountered in hospitals, hospices, care homes and home care settings. It also includes discussion of non-religious spirituality, humanism, agnosticism and atheism. The final part outlines key socio-legal aspects of death across the UK. Death, Religion and Law provides key knowledge, discussion and reflection for dealing with the diversity of the everyday care of dying and death in different religious, secular and cultural contexts. It is an important reference for practitioners working with dying patients, their families and the bereaved. (shrink)

While there is a great deal to agree with in the essay Expanded Terminal Sedation in End-of-Life Care there is, we think, a need to more fully appreciate the humanistic side of both palliative and end-of-life care.1 Not only does the underlying philosophy of palliative care arguably differ from that which guides curative medicine,2 dying patients are in a uniquely vulnerable position given our cultural disinclination towards open discussions of death and dying. In this brief response, (...) we critically engage Gilbertson et al ’s essay and seek to contextualise the perspective they put forward. According to Cassell, we should distinguish between pain and suffering.3 The former often gives rise to the latter, but suffering has other causes. This includes existential distress, indicating that, unlike pain, suffering is not simply physiological phenomena. Suffering involves the disintegration of the person, meaning that it can impact patient autonomy. Certainly, that a patient is suffering does not equate to a lack autonomy. Nevertheless, we should take care when making decisions in circumstance where the integrity of our embodied personhood is under threat, something that is clearly the case for those who are dying, particularly those who have refractory symptoms while doing so. Generally speaking, refractory symptoms are those which are intractable. They persist despite attempts at palliation. While this implies that such symptoms—and the suffering they cause—cannot be reversed this is not necessarily the case. Not only can the symptoms experienced by dying patients change …. (shrink)

Regulation and clinical practices regarding end of human life care differ among the nations and countries. These differences reflect the history of the development of state health systems, different societal values, and different understandings of dignity and what it means to protect or respect dignity. The result is variation in the ethical, legal, and practical approaches to end-of-life issues. The article analyzes the diversity of strategies to strengthen dignity at the end of life of terminally ill patients and to (...) highlight the legal preconditions and limitations for implementing these strategies in independent Lithuania, as a former state of the Soviet Union. It is based on the critical analysis of philosophical literature, legal national and international documents and scientific evidence related to the issue. The author argues that the legal system in Lithuania is not sufficient to ensure the patient’s dignity at the end of life and remains far behind other Western European countries. Legal regulations in Lithuania do not guarantee the right of the patient to express his or her will regarding the future treatment, including the refusal of resuscitation, do not regulate the termination of burdensome, non-viable and meaningless treatment that is undesired by the patient, and limit the accessibility of palliative care with its necessary quality and comfort. (shrink)

This paper aims at explicating a theory of hope that is also suitable for gravely ill people and based on virtue ethics, research in the psychology of “well-being,” and the philosophy of palliative care. The working hypotheses of the theory are that hope is conditioned neither by past events nor by present needs, but is not necessarily oriented toward the future, especially the distant future; that hope is related to personal agency and to freedom; and that hope is deliberative, (...) hence evaluative, motivatory, and rationally critical. Following Higgins’ distinction between “prevention-focus” and “promotion-focus” strategies of coping, and Rawls’ notion of the “Aristotelian principle,” it is argued that hope is the valuation of and personal identification with “promotion-focus” goals with an attitude of nonattachment to any one goal. (shrink)

Practitioners of palliative care often argue for more resources to be provided by the state in order to lessen its reliance on charitable funding and to enable the services currently provided to some of those with terminal illnesses to be provided to all who would benefit from it. However, this is hard to justify on grounds of cost-effectiveness, since it is in the nature of palliative care that the benefits it brings to its patients are of short (...) duration. In particular, palliative care fares badly under a policy of QALY-maximisation, since procedures which prevent premature death (provided the life is of reasonable quality) or improve quality of life for those with longer life expectancy will produce more QALYs. This paper examines various responses to this problem and argues that in order to justify increased resources for palliative care its advocates must reject the ‘atomistic’ view of the value of life implicit in the QALY approach in favour of a ‘holistic’ or ‘narrative’ account. This, however, has implications which advocates of palliative care may be reluctant to embrace. (shrink)

Background: Due to recent legislations on euthanasia and its current practice in the Netherlands and Belgium, issues of end-of-life medicine have become very vital in many European countries. In 2002, the Ethics Working Group of the German Association for Palliative Medicine (DGP) has conducted a survey among its physician members in order to evaluate their attitudes towards different end-of-life medical practices, such as euthanasia (EUT), physician-assisted suicide (PAS), and terminal sedation (TS). Methods: An anonymous questionnaire was sent to the (...) 411 DGP physicians, consisting of 14 multiple choice questions on positions that might be adopted in different hypothetical scenarios on situations of “intolerable suffering” in end-of-life care. For the sake of clarification, several definitions and legal judgements of different terms used in the German debate on premature termination of life were included. For statistical analysis t-tests and Pearson-correlations were used. Results: The response rate was 61% (n=251). The proportions of the respondents who were opposed to legalizing different forms of premature termination of life were: 90% opposed to EUT, 75% to PAS, 94% to PAS for psychiatric patients. Terminal sedation was accepted by 94% of the members. The main decisional bases drawn on for the answers were personal ethical values, professional experience with palliative care, knowledge of alternative approaches, knowledge of ethical guidelines and of the national legal frame. Conclusions: In sharp contrast to similar surveys conducted in other countries, only a minority of 9.6% of the DGP physicians supported the legalization of EUT. The misuse of medical knowledge for inhumane killing in the Nazi period did not play a relevant role for the respondents’ negative attitude towards EUT. Palliative care needs to be stronger established and promoted within the German health care system in order to improve the quality of end-of-life situations which subsequently is expected to lead to decreasing requests for EUT by terminally ill patients. (shrink)

"Ce livre propose une enquête philosophique explorant le rapport à la mort dans nos sociétés. C’est une invitation à penser les liens humains à la fin de la vie. On évoque les liens intimes, mais également les liens sociaux encadrés par la loi. Dans un tel contexte, comment discerner les raisons anciennes et nouvelles convenant au bien de la cité? L’ouvrage s’adresse aux accompagnants en soins palliatifs. Il concerne également toute personne soucieuse pour elle-même et ses proches de réfléchir à (...) son voyage au bout de la vie. Nous sommes mortels, nous le savons et le fil de nos existences provoque des occasions de nous le rappeler. Dans la solitude de mourir s’inscrit l’appel à la compassion. Ainsi, pour les Grecs de l’Antiquité, l’image de la cigogne symbolisait la prise en charge des vieux par les jeunes, un signe de l’amitié politique. L’émergence de la culture palliative est intimement liée aux changements qui ont affecté l’évolution récente de la vie démocratique. Cette culture est née et s’est développée dans des circonstances politiques particulières. À l’observer, on peut déchiffrer certains codes de notre vie civique, ses aspirations, mais aussi ses ambiguïtés. Louis-André Richard propose d’examiner les questions actuelles en compagnie de Platon, d’Aristote, d’Augustin ou de Tocqueville. Grâce à eux, la philosophie, symbolisée par la sagesse de Minerve, est mise à contribution pour explorer la genèse et les métamorphoses de concepts comme la dignité et l’autonomie. Comment se déploie la dynamique de la raison et de la liberté à l’heure de notre mort? Tel est l’enjeu pour les roseaux pensants que nous sommes. Si notre frêle espèce appelle à la sollicitude de la cigogne, elle ne saurait négliger de convoquer aussi la sagesse de Minerve."--Résumé de l'éditeur. (shrink)

Speaking about the state of the Hollywood film industry at the 2008 Academy Awards, the Oscars’ host – comedian Jon Stewart – made the following wry assessment: ‘Not all films did as well as Juno obviously. The films that were made about the Iraq War, let’s face it, did not do as well. But I’m telling you, if we stay the course and keep these movies in the theatres we can turn this around. I don’t care if it takes (...) 100 years. Withdrawing the Iraq movies would only embolden the audience. We cannot let the audience win.’ The films he is referring to include Home of the Brave (2006), In the Valley of Elah (2007) and Stop-Loss (2008) – all of which focus on the personal cost to American soldiers on their return to civilian life, as well as exposing the failure of the US invasion of Iraq at home and abroad. Despite their topical subject matter, these movies were, for the most part, commercial failures. This article seeks to investigate audience indifference (Jean Baudrillard claims a certain indifference is a fundamental consequence of the Western globalising ideology) to mainstream cinematic depictions of the post September 11 invasion of Iraq, via a consideration of the trauma and abjection depicted in these films. Baudrillard’s hypotheses on terrorism – as a symbolic challenge put forth by terrorism (embodied by the attack on the Twin Towers) – and the West’s incapacity to respond to it, forms the basis for our investigation of the limits of these films to incite and engage viewers. His writings offer a lens through which to consider how ‘terrorism’ operates symbolically, and fundamentally, the dilemmas this raises for a Western psyche grappling with how the ‘terrorist threat’ might be answered, engaged with, responded to. (shrink)

Recently, the concept of expanded terminal sedation emerged to describe using sedation at the end of life in cases beyond the usual use. Using this sedation could be a stressful ethical encounter for healthcare providers. In this paper, we describe a case of a Muslim palliative care nurse who cared for a patient with cancer who requested expanded terminal sedation. The palliative care nurse described that his initial response to the expanded terminal sedation order was (...) refusing to start the sedation because he believed the patient was not terminally ill and was concerned about killing him, which is prohibited according to his religious beliefs. Further, the nurse perceived the patient’s psychological distress and his verbalization of wishing to die peacefully as a concealed request for euthanasia, especially since he was not imminently dying. Finally, the nurse reported being frustrated and uncertain about the care, especially since he did not receive appropriate psychological counseling from professional personnel. any case beyond the usual conditions for terminal sedation should be carefully examined, especially when nurses’ religious beliefs or moral values contradict it. If sedation should be administered, adequate preparation of healthcare providers should be arranged, including discussing with them the goals of care and the rationale for sedation before and after initiating it. Generating a policy for conscientious objections, allowing nurses to express their own emotions and concerns in a supportive environment are suggested approaches to preserve their wellness. (shrink)

This article seeks to assess the results of legislation legalizing medical termination, known in Canada as "medical aide in dying" in 2016. Its focus, like that of previous authors, is to ask if the concerns of skeptics opposed to legalization have been realized or were they unfounded. These include the likelihood of a “slippery slope” with an expanding definition of eligibility and of MAiD deaths. Of similar concern at least since 1995 was the likelihood that, in the absence of the (...) provision of palliative, rehabilitative, psychological and social services that medical termination would be a substitute for good medical care. These and other concerns are the basis for the review of MAiD in Canada clinically, legally and as an ethical construct. (shrink)

The current article deals with the ethics and practice of physician-assisted suicide (PAS) and dying. The debate about PAS must take the important legal and ethical context of medical acts at the end of life into consideration, and cannot be examined independently from physicians’ duties with respect to care for the terminally ill and dying. The discussion in Germany about active euthanasia, limiting medical intervention at the end of life, patient autonomy, advanced directives, and PAS is not fundamentally different (...) in content and arguments from discussions led in other European countries and the United States. This must be emphasized, since it is occasionally claimed that in Germany a thorough discussion could not be held with the same openness as in other countries due to Germany’s recent history. Still, it is worthwhile to portray the debate, which has been held intensively both among experts and the German public, from the German perspective. In general, it can be stated that in Germany debates about questions of medical ethics and bioethics are taking place with relatively large participation of an interested public, as shown, for instance, by the intense recent discussions about the legalisation of advanced directives on June 18 2009, the generation and use of embryonic stem cells in research or the highly difficult challenges for the prioritizing and rationing of scarce resources within the German health care system. Hence, the current article provides some insights into central medical and legal documents and the controversial public debate on the regulation of end-of-life medical care. In conclusion, euthanasia and PAS as practices of direct medical killing or medically assisted killing of vulnerable persons as “due care” is to be strictly rejected. Instead, we propose a more holistically-oriented palliative concept of a compassionate and virtuous doctor-cared dying that is embedded in an ethics of care. (shrink)

This article presents a part of the results of an empirical study conducted at a Parisian hospital between 2011 and 2014. It aimed at understanding the women and couples’ motivations to terminate or not a pregnancy once a prenatal diagnosis has revealed a genetically related disease in the embryo or fetus. The article first presents the social and legal context of the study, the methodology used and the pathologies that were encountered. Then, it examines the results of the interviews conducted (...) with 5 women alone and 23 couples explaining their reasons for deciding to terminate or not the pregnancy. Finally, it explores the patients’ views about the doctor’s involvement in the decision-making process. The findings reveal the reasons they formulate when they ponder whether to terminate or not the pregnancy. It highlights the process of their deliberation, their hierarchisation of arguments and concerns. They also show how patients, though often consumed in sorrow, claim to be the legitimate decision-makers, especially women, in a social and legal context in which the rejection of eugenics is viewed as an undisputable principle. (shrink)

Palliative care names as one of its central aims to prevent and relieve suffering. Following the concept of “total pain”, which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient’s psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all (...) other means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide, or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers’ efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS. (shrink)

Rapid tissue donation (RTD) is an advancing oncology research procedure for collecting tumors, metastases, and unaffected tissue 2–6 h after death. Researchers can better determine rates of progression, response to treatment, and polymorphic differences among patients. Cancer patients may inquire about posthumous body donation for research to offer a personal contribution to research; however, there are barriers to recruiting for an RTD program. Physicians must reassure the patient that their treatment options and quality of care will not be compromised (...) due to participating in RTD. In this commentary we discuss how theories of altruism may explain cancer patients’ desire to participate in an RTD program, the ethical concerns of health care professionals and patients and the use of altruism as a recruitment strategy. We offer recommendations for examining the cultural and ethical climate of the institution prior to initiating such a program such as examining the relationship of healthcare professionals and patients, identifying ethical concerns, and examining ways to promote acceptance and buy-in across professionals, patients, and families. (shrink)

Research questions and backgroundThis study explores a highly controversial issue of medical care in Germany: the decision to withhold or withdraw mechanical ventilation in critically ill patients. It analyzes difficulties in making these decisions and the physicians’ uncertainty in understanding the German terminology of Sterbehilfe, which is used in the context of treatment limitation. Used in everyday language, the word Sterbehilfe carries connotations such as helping the patient in the dying process or helping the patient to enter the dying (...) process. Yet, in the legal and ethical discourse Sterbehilfe indicates several concepts: (1) treatment limitation, i.e., withholding or withdrawing life-sustaining treatment (passive Sterbehilfe), (2) the use of medication for symptom control while taking into account the risk of hastening the patient’s death (indirekte Sterbehilfe), and (3) measures to deliberately terminate the patient’s life (aktive Sterbehilfe). The terminology of Sterbehilfe has been criticized for being too complex and misleading, particularly for practical purposes. Materials and methods An exploratory study based on qualitative interviews was conducted with 28 physicians from nine medical intensive care units in tertiary care hospitals in the German federal state of Baden-Wuerttemberg. The method of data collection was a problem-centered, semi-structured interview using two authentic clinical case examples. In order to shed light on the relation between the physicians’ concepts and the ethical and legal frames of reference, we analyzed their way of using the terms passive and aktive Sterbehilfe. Results Generally, the physicians were more hesitant in making decisions to withdraw rather than withhold mechanical ventilation. Almost half of them assumed a categorical prohibition to withdraw any mechanical ventilation and more than one third felt that treatment ought not to be withdrawn at all. Physicians showed specific uncertainty about classifying the withdrawal of mechanical ventilation as passive Sterbehilfe, and had difficulties understanding that terminating ventilation is not basically illegal, but the permissibility of withdrawal depends on the situation. Conclusions The physicians’ knowledge and skills in interpreting clinical ethical dilemmas require specific improvement on the one hand; on the other hand, the terms passive and aktive Sterbehilfe are less clear than desirable and not as easy to use in clinical practice. Fear of making unjustified or illegal decisions may motivate physicians to continue (even futile) treatment. Physicians strongly opt for more open discussion about end-of-life care to allow for discontinuation of futile treatment and to reduce conflict. (shrink)

RésuméDans cette introduction, je propose un survol de Freedom to Care: Liberalism, Dependency Care, and Culture d'Asha Bhandary, afin que les lecteurs puissent mieux situer les suggestions des contributeurs au symposium, Clark Wolf, Elizabeth Edenberg et Helga Varden. Bhandary développe et défend la théorie libérale de la prise en charge de la dépendance en réponse à l’échec des théories libérales passées à reconnaître que cette prise en charge de la dépendance, qui est essentielle à notre survie, relève de (...) la justice. En terminant, je tisse des liens avec la philosophie de Jean Hampton, afin de stimuler la discussion autour des travaux inédits de Bhandary, qui élargissent l'influence de la théorisation libérale féministe contemporaine. (shrink)

BackgroundIn cancer care, do not resuscitate (DNR) 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)

During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot (...) express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported – terminating an already initiated treatment – we propose the concept of ‘evidence shift’ to clarify the ambiguous position of uncertainty in decision making. (shrink)

Studies on end-of-life care reveal different practices regarding withholding and/or withdrawing life-sustaining treatments between countries and regions. Available data about physicians’ practices regarding end-of-life care in ICUs in Egypt is scarce. This study aimed to investigate physicians’ attitudes toward end-of-life care and the reported practice in adult ICUs in Ain Shams University Hospitals, Cairo, Egypt. 100 physicians currently working in several ICU settings in Ain Shams University Hospitals were included. A self-administered questionnaire was used for collection of (...) data. Most of the participants agreed to implementation of “do not resuscitate” (DNR) orders and applying pre-written DNR orders (61% and 65% consecutively), while only 13% almost always/often order DNR for terminally-ill patients. 52% of the participants agreed to usefulness of limiting life-sustaining therapy in some cases, but they expressed fear of legal consequences. 47% found withholding life-sustaining treatment is more ethical than its withdrawal. 16% almost always/often withheld further active treatment but continued current ones while only 6% almost always/often withdrew active therapy for terminally-ill patients. The absence of legislation and guidelines for end-of-life care in ICUs at Ain Shams University Hospitals was the main influential factor for the dissociation between participants’ attitudes and their practices. Therefore, development of a consensus for end-of-life care in ICUs in Egypt is mandatory. Also, training of physicians in ICUs on effective communication with patients’ families and surrogates is important for planning of limitation of life-sustaining treatments. (shrink)

Introduction: Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians’ attitudes towards withholding and withdrawal of curative or life-sustaining treatment. Method: From May to September 2008, we interviewed 14 physicians and 13 nurses working in (...) different palliative-care programmes in New Delhi, using a semi-structured questionnaire. For the interviews and analysis of the data we followed Grounded-Theory methodology. Results: Withholding a curative or life-sustaining treatment which may prolong a terminal cancer patient’s life with a few weeks but also has severe side-effects was generally considered acceptable by the interviewees. The majority of the interviewees agreed that life-sustaining treatments can be withdrawn in a patient who is in an irreversible coma. The palliative-care physicians and nurses were of the opinion that a patient has the right to refuse life-saving curative treatment. While reflecting upon the ethical acceptability of withholding or withdrawal of curative or life-sustaining treatment, the physicians and nurses were concerned about the whole patient and other people who may be affected by the decision. They were convinced they can play an important advisory role in the decision-making process. Conclusion: While deciding about the ethical issues, the physicians and nurses do not restrict their considerations to the physical aspects of the disease, but also reflect upon the complex wider consequences of the treatment decisions. (shrink)

Throughout more than forty years of distinguished teaching and scholarship, James W. Felt has been respected for the clarity and economy of his prose and for his distinctive approach to philosophy. The seventeen essays collected in __Adventures in Unfashionable Philosophy__ reflect Felt's encounters with fundamental philosophical problems in the spirit of traditional metaphysics but updated with modern concerns. Among the main themes of the volume are: the enrichment of Thomistic philosophy through engagement with modern philosophers, Whitehead and Bergson, in particular; (...) considerations of metaphysical method and its effect on philosophic conclusions; the development of a nuanced epistemological realism; and the relation of possibility to actuality and of time to experience. "__Adventures in Unfashionable Philosophy__ does indeed lie off the beaten path. To deal straightforwardly today with God, the self, freedom, and the meaning of human life is not only unfashionable: it is considered terminally naive. James Felt, however, is not naive. His clear, careful thought breathes new life into old problems, providing fresh insights where traditional approaches have failed." --_Pete A. Y. Gunter, University of North Texas__"_ _"___Adventures in Unfashionable Philosophy_ _is equivalently James Felt's intellectual autobiography. In a series of essays written over a period of forty years and now republished with introductory self-critical comments, Felt records his journey from a youthful enthusiasm for the philosophy of Alfred North Whitehead to his conversion to the philosophy of Thomas Aquinas and, in recent years, his efforts to come up with a creative synthesis of the major insights of both Aquinas and Whitehead. One does not have to agree with all his conclusions, but everyone should admire the dispassionate way in which he analyzes and critiques both systems for their relative strengths and weaknesses." --_Joseph A. Bracken, S.J., Xavier University_ "Felt makes no concessions to the current unfashionable status of classical metaphysics. With justified confidence in the foundational importance of the discipline, and in dialog with some of its most famous practitioners, he explores and advances many of its perennial themes in essays exemplary in their clarity of reasoning and expression." --_Jorge Nobo, Washburn University_ "__Adventures in Unfashionable Philosophy_ _is a sound, insightful, mature, and philosophically rich work. One hears a distinctive voice in all of the essays of the collection, the voice of a teacher anxious to share ideas that have animated his own philosophical development. This is rare, and something to be celebrated when it is found." --_Brian Martine, University of Alabama, Huntsville_. (shrink)

Contemporary medical practice and health policy are increasingly animated by the concept of providing high value care. Nevertheless, there can be disagreements about how value is defined and from whose perspective. Individual patients suffering from terminal cancer, for example, may have a different perception of the value of an expensive chemotherapy when compared to health policymakers, insurers, or others responsible for the financial solvency of health care organizations. Thus it seems reasonable to ask what is meant by (...) “value” in high value care. In light of Edmund Pellegrino’s significant contributions to the philosophy of medicine, medical humanities, and bioethics, it seems equally reasonable to examine how he might answer it. This paper describes a Pellegrino-inspired theory of value that is instrumental, agent relative, and pluralistic. It then compares and contrasts this to the contemporary view and argues that only when individual patients incorporate concern for societal-level value into their conceptions of the highest good can the Pellegrino-inspired and contemporary views of value be reconciled. (shrink)

BackgroundThis study aimed to identify the healthcare providers’ experience and perspectives toward end-of-life care decisions focusing on end-of-life discussion and physician’s order of life-sustaining treatment documentation in Korea which are major parts of the Life-Sustaining Treatment Act.MethodsA cross-sectional survey was conducted using a questionnaire developed by the authors. A total of 474 subjects—94 attending physicians, 87 resident physicians, and 293 nurses—participated in the survey, and the data analysis was performed in terms of frequency, percentage, mean and standard deviation using (...) the SPSS 24.0 program.ResultsStudy results showed that respondents were aware of terminal illness and physician’s order of life-sustaining treatment in Korea well enough except for some details. Physicians reported uncertainty in terminal state diagnosis and disease trajectory as the most challenging. Study participants regarded factors (related to relationships and communications) on the healthcare providers’ side as the major impediment to end-of-life discussion. Study respondents suggested that simplification of the process and more staff are required to facilitate end-of-life discussion and documentation.ConclusionBased on the study results, adequate education and training for better end-of-life discussion are required for future practice. Also, a simple and clear procedure for completing a physician’s order of life-sustaining treatment in Korea should be prepared and legal and ethical advice would be required. Since the enactment of the Life-Sustaining Treatment Act, several revisions already have been made including disease categories, thus continuous education to update and support clinicians is also called for. (shrink)

Background Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. Aim The aim of this study was to explore palliative care physicians’ experiences of ethical challenges in relation to thirst in terminally ill patients. Methods (...) A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient’s autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. Conclusions All physicians in this study reported that “Starting, continuing or discontinuing drips” was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular. (shrink)

Immer mehr Menschen in der Schweiz praktizieren Yoga, glauben an eine Wiedergeburt und lassen sich komplementärmedizinisch behandeln. Barbara Zeugin untersucht, wie sich dieser religiöse Wandel auf die Begleitung am Lebensende auswirkt. Insofern alternative Formen von Religion in der Schweiz zunehmen, ist es nicht erstaunlich, wenn in der Begleitung am Lebensende auch alternativ-religiöse Praktiken und alternative Heilverfahren sowie die entsprechenden Rationalisierungen immer mehr an Bedeutung gewinnen. Die Rekonstruktion einer solchen, als alternativ aufgefassten Sterbebegleitungspraxis führte die Religionswissenschaftlerin erstens in ein Hospiz für (...) schwer Kranke und Sterbende und zweitens in ein anthroposophisch-medizinisches Spital, wo sie beobachtend und fragend den folgenden Fragen nachging: Welche alternativ-religiösen Handlungsformen und Rationalisierungen spielen in der Begleitung am Lebensende eine Rolle? Welche Bedeutung wird alternativen Heilpraktiken zugeschrieben? Wie sieht die konkrete Begleitungspraxis aus? Und worin besteht letztlich die Alternativität dieser Praxis resp. wie verhält sich diese zum Selbstanspruch der Palliative Care, die schwer Kranken und Sterbenden auch spirituell zu begleiten?"-- Back cover. (shrink)

Research questions and backgroundThis study explores a highly controversial issue of medical care in Germany: the decision to withhold or withdraw mechanical ventilation in critically ill patients. It analyzes difficulties in making these decisions and the physicians’ uncertainty in understanding the German terminology of Sterbehilfe, which is used in the context of treatment limitation. Used in everyday language, the word Sterbehilfe carries connotations such as helping the patient in the dying process or helping the patient to enter the dying (...) process. Yet, in the legal and ethical discourse Sterbehilfe indicates several concepts: (1) treatment limitation, i.e., withholding or withdrawing life-sustaining treatment (passive Sterbehilfe), (2) the use of medication for symptom control while taking into account the risk of hastening the patient’s death (indirekte Sterbehilfe), and (3) measures to deliberately terminate the patient’s life (aktive Sterbehilfe). The terminology of Sterbehilfe has been criticized for being too complex and misleading, particularly for practical purposes. Materials and methods An exploratory study based on qualitative interviews was conducted with 28 physicians from nine medical intensive care units in tertiary care hospitals in the German federal state of Baden-Wuerttemberg. The method of data collection was a problem-centered, semi-structured interview using two authentic clinical case examples. In order to shed light on the relation between the physicians’ concepts and the ethical and legal frames of reference, we analyzed their way of using the terms passive and aktive Sterbehilfe. Results Generally, the physicians were more hesitant in making decisions to withdraw rather than withhold mechanical ventilation. Almost half of them assumed a categorical prohibition to withdraw any mechanical ventilation and more than one third felt that treatment ought not to be withdrawn at all. Physicians showed specific uncertainty about classifying the withdrawal of mechanical ventilation as passive Sterbehilfe, and had difficulties understanding that terminating ventilation is not basically illegal, but the permissibility of withdrawal depends on the situation. Conclusions The physicians’ knowledge and skills in interpreting clinical ethical dilemmas require specific improvement on the one hand; on the other hand, the terms passive and aktive Sterbehilfe are less clear than desirable and not as easy to use in clinical practice. Fear of making unjustified or illegal decisions may motivate physicians to continue (even futile) treatment. Physicians strongly opt for more open discussion about end-of-life care to allow for discontinuation of futile treatment and to reduce conflict. (shrink)

Patients with advanced dementia are less likely than those with other terminal illnesses to receive palliative care. Due to the nature and course of dementia, there may be a failure to recognize the terminal stage of the disease. A possible and under-investigated explanation for this healthcare disparity is the healthcare practitioner who plays a primary role in end-of-life decision-making. Two potential areas that might impact provider decision-making are cognitive biases and moral considerations. In this analysis, we demonstrate (...) how the cognitive biases and moral considerations of practitioners related to clinical decision-making are inherent in clinical practice and may impact on providers’ accuracy related to diagnostic and treatment related decision-making associated with patients with advanced dementia. Anchoring, default, availability, representativeness and framing biases are cognitive biases based on the "Two System Model" that relate to decision-making in end-of-life care. In patients with advanced dementia, those biases may result in a tendency to adhere to traditional mandatory care, involving an aggressive approach to care, which values saving lives at all costs, without taking into account the possible suffering and long-term consequences. Aspects such as moral sensitivity and moral courage play an important role in ethical decision-making related to advanced dementia. Investigations of clinical decision-making that include the cognitive biases and ethical considerations of practitioners might advance the comprehensive understanding of the clinical decision-making process related to care of patients with advanced dementia and promote the quality of care given to this population. (shrink)

Medical futility, one of the most debated end-of-life issues in medical ethics, has been discussed among physicians and scholars for years but remained an unresolved question. Roger C. Bone (1941–1997), an outstanding pulmonologist and critical care specialist, devoted his last years to ethical issues of terminal care, while facing himself metastatic renal cancer. Criticising the abuse of technology in terminal care and the administrative and financial interference on medical decisions, he bequeathed important points on futility, (...) bringing also patients’ views into attention. He stressed the importance of physician-patient relationship and prompted physicians to remain honest with their patients and stand with them till their very last moments. Roger Bone’s insight of futility, terminal care and physician-patient relationship remains an important legacy for health care professionals and for families and patients facing end-of-life issues. (shrink)

In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick’s observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even (...) at the price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients’ life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever (“total pain” or critical suffering). Only in the fourth circle are people hedonists. (shrink)

This article examines the compatibility and relevance of Gabriel Marcel’s phenomenology of hope in interdisciplinary research on the role of hope in end-of-life care. Our analysis is divided into three thematic topics which examine the various shades of hope observed in Marcel’s phenomenology of hope and in the collection of 20 EOL studies on hope as experienced by adult palliative care patients, health care professionals and parents of terminally ill children. The three topics defining the shades of (...) hope are: the meaning of hope in its dynamic aspects, the dialectics of hope and despair, and the transcendent facets of hope. We analyse how Marcel’s understanding of hope is reflected in EOL studies, and how this perception can enrich the philosophy of PC and significantly deepen and broaden HCPs’ understanding of hope. Our findings prove that despite terminological differences between Marcelian phenomenology and the concepts of hope in the 20 EOL studies, hope emerges as a resourceful movement towards being. Implementing Marcelian hope within communication in EOL care could help in HCPs’ interpersonal approach to patients as his concept harbors a holistic perception of the existential situation of a person. Equally, introducing Marcel’s phenomenology of hope into the clinical encounter could play a beneficial role in improving the ability of patients to adapt to the difficult conditions of their disease and PC treatment. (shrink)