Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

Explore the Resistance to Death, and Awaken More Fully to Life Death is simply one more aspect of being a human being, but in our culture, we've made it a taboo. As a result, most of us walk through life with conscious or unconscious fears that prevent us from experiencing true contentment. Embracing the End of Life invites you to lean into your beliefs and questions about death and dying, helping you release tense or fearful energy and (...) awaken to a more vital life now. Preparing mentally, emotionally, and spiritually for this inevitable transition provides improved clarity and strength. This book shares the idea of death as a journey of three steps—resistance, letting go, and transcendence. With dozens of exercises, practices, and meditations, author Patt Lind-Kyle helps you experience your truest, most expansive self. Exploring multiple aspects of life and death—with everything from chakras and the Enneagram to living wills and health care directives—this book is meant to help you unwind the challenge of death and discover the truth of your own path to inner freedom. Praise: "The fear of dying keeps countless people from living fully—as well as keeping countless others trapped in endless suffering. Embracing the End of Life will help all of us prepare joyously for the inevitable."—Christiane Northrup, MD, New York Times bestselling author of Goddesses Never Age Winner of a 2018 Gold IPPY Award. (shrink)

In nearly all aspects of life, humans are crossing lines of no return. Modern science is leading us into vast uncharted territory—far beyond the invention of nuclear weapons or taking us to the moon.Today, in labs all over the world, scientists are performing experiments that threaten to fundamentally alter the practical character and ethical color of our everyday lives. In The End of Life as We Know It, bestselling author Michael Guillen takes a penetrating look at how the (...) scientific community is pushing the boundaries of morality, including: • Scientists who detached the head of a Russian man from his crippled, diseased body, and stitching it onto a healthy new donated body. • Fertility experiments aimed at allowing designer babies to be conceived with the DNA from three or more biological parents. • The unprecedented politicization of science – for example, in the global discussion about climate change that is pitting “deniers” against “alarmists” and inspiring Draconian legislation, censorship, and legal prosecutions. • The integration of Artificial Intelligence into communications and the economy. The End of Life as We Know It takes us into labratories and boardrooms where these troubling advances are taking place and asks the question no scientists seem to be asking: What does this mean for the future of humanity? (shrink)

The use of Nasogastric (NG) feeding in the provision of artificial nutrition and hydration at the end of life has, for the most part, been regarded as futile by the medical community. This position has been led chiefly by prevailing medical data. In Singapore, however, there has been an increase in its utilization supported primarily by social, religious and cultural factors expressly to prolong life of the terminally ill patient. Here this article will seek to review the ethical (...) and clinical impact of this treatment and provide some understanding for such decisions in the light of the Duty of Palliative Care [DoPC]. Complemented by virtue ethics theory, the DoPC highlights and seeks to realize the individual case specific goals of care that maximize comfort and quality of life of the patient in the face of rapid attenuation of treatment options and the eminence of the final outcome by considering each of these factors individually in order to provide the best outcome for the patient and the family. (shrink)

In this provocative book, a professor of philosophy examines the arguments for and against euthanasia, analyzes specific case studies, including those of Baby Jane Doe and Barney Clark, and offers an alternate theory on the morality of euthanasia. Various traditional distinctions--between "human" and "non-human," intentional and nonintentional, killing and "letting die"--are taken into account to determine whether euthanasia is permissible or not. Rachels presents a systematic argument against the traditional view, defending an alternative position based on the belief that there (...) is a profound difference between having a life and merely being alive. (shrink)

Modern biomedical technologies managed to revolutionise the End-of-Life Care (EoLC) in many aspects. The dying process can now be "engineered" by managing the accompanying physical symptoms or by "prolonging/hastening" death itself. Such interventions questioned and problematised long-established understandings of key moral concepts, such as good life, quality of life, pain, suffering, good death, appropriate death, dying well, etc. This volume examines how multifaceted EoLC moral questions can be addressed from interdisciplinary perspectives within the Islamic tradition. Contributors Amir (...) Abbas Alizamani, Beate Anam, Hamed Arezaei, Asma Asadi, Pieter Coppens, Hans Daiber, Khalid Elzamzamy, Mohammed Ghaly, Hadil Lababidi, Shahaboddin Mahdavi, Aasim Padela, Rafaqat Rashid and Ayman Shabana. (shrink)

The book's main contribution is its interdisciplinary approach to the issue of sedation at the end-of-life. Because it occurs at the end of life, palliative sedation raises a number of important ethical and legal questions, including whether it is a covert form of euthanasia and for what purposes it may legally be used. Many of the book chapters address the first question and almost all deal with a specific form of the second: whether palliative sedation should be used (...) for those experiencing "existential suffering"? This raises the question of what existential suffering is, a topic that is also discussed in the book. The different chapters address these issues from the perspectives of the relevant disciplines: Palliative Medicine, Bioethics, Law and Theology. Hence, helpful accounts of the clinical and historical background for this issue are provided and the importance of drawing accurate ethical and legal distinctions is stressed throughout the whole book. So the volume represents a valuable contribution to the emerging literature on this topic and should be helpful across a broad spectrum of readers: philosophers, theologians and physicians. (shrink)

"End-Of-Law week drinkS @ ACT Magistrates Court: Friday 20 May 2005." Ethos: Official Publication of the Law Society of the Australian Capital Territory, (198), pp. 24.

There has been much debate regarding the 'double-effect' of sedatives and analgesics administered at the end-of-life, and the possibility that health professionals using these drugs are performing 'slow euthanasia.' On the one hand analgesics and sedatives can do much to relieve suffering in the terminally ill. On the other hand, they can hasten death. According to a standard view, the administration of analgesics and sedatives amounts to euthanasia when the drugs are given with an intention to hasten death. In (...) this paper we report a small qualitative study based on interviews with 8 Australian general physicians regarding their understanding of intention in the context of questions about voluntary euthanasia, assisted suicide and particularly the use of analgesic and sedative infusions (including the possibility of voluntary or non-voluntary 'slow euthanasia'). We found a striking ambiguity and uncertainty regarding intentions amongst doctors interviewed. Some were explicit in describing a 'grey' area between palliation and euthanasia, or a continuum between the two. Not one of the respondents was consistent in distinguishing between a foreseen death and an intended death. A major theme was that 'slow euthanasia' may be more psychologically acceptable to doctors than active voluntary euthanasia by bolus injection, partly because the former would usually only result in a small loss of 'time' for patients already very close to death, but also because of the desirable ambiguities surrounding causation and intention when an infusion of analgesics and sedatives is used. The empirical and philosophical implications of these findings are discussed. (shrink)

Surveys in different countries (e.g. the UK, Belgium and The Netherlands) show a marked recent increase in the incidence of continuous deep sedation at the end of life (CDS). Several hypotheses can be formulated to explain the increasing performance of this practice. In this paper we focus on what we call the ‘natural death’ hypothesis, i.e. the hypothesis that acceptance of CDS has spread rapidly because death after CDS can be perceived as a ‘natural’ death by medical practitioners, patients' (...) relatives and patients.We attempt to show that the label ‘natural’ cannot be unproblematically applied to the nature of this end-of-life practice. We argue that the labeling of death following CDS as ‘natural’ death is related to a complex set of mechanisms which facilitate the use of this practice. However, our criticism does not preclude the view that CDS may be clinically and ethically justified in many cases. (shrink)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive design with (...) analysis of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

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

The end of the world is a seemingly interminable topic; at least, of course, until it happens. Environmental catastrophe and planetary apocalypse are subjects of enduring fascination and, as ethnographic studies show, human cultures have approached them in very different ways. Indeed, in the face of the growing perception of the dire effects of global warming, some of these visions have been given a new lease on life. Information and analyses concerning the human causes and the catastrophic consequences of (...) the planetary crisis have been accumulating at an ever-increasing rate, mobilising popular opinion as well as academic reflection. In this book, philosopher Deborah Danowski and anthropologist Eduardo Viveiros de Castro offer a bold overview and interpretation of these current discourses on the end of the world, reading them as thought experiments on the decline of the West's anthropological adventure; that is, as attempts, though not necessarily intentional ones, at inventing a mythology that is adequate to the present. This work has important implications for the future development of ecological practices and it will appeal to a broad audience interested in contemporary anthropology, philosophy, and environmentalism. (shrink)

The article proposes to reconsider the late Heidegger’s examination of the concept of the world, as for Heidegger the eradication of all life on planet earth is not the most horrible thing that could happen. It is the impossibility of thinking the world that exposes us to something worse: the loss of our link with being. Following Heidegger, to think the world is not only necessary to prevent the extinction of life on earth, but, moreover, the loss of (...) thinking the world lies at the beginning of the crisis we are living through. (shrink)

Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.

Death is the destiny we all share, and this will not change. Yet the way we die, which had remained the same for many generations, has changed drastically in a relatively short time for those in developed countries with access to healthcare. For generations, if people were lucky enough to reach old age, not having died in infancy or childhood, in childbirth, in war, or by accident, they would take to bed, surrounded by loved ones who cared for them, and (...) fade into death. Most likely, they would have seen their parents and grandparents die the same way, and so this manner of dying would be familiar: it was part of the natural cycle of life. Now less than 25 per cent of Americans die at home, having reached much older ages than people would have dreamed of in past generations, often after surviving many illnesses and even diseases that would have been terminal for their grandparents. We are fortunate to live (and die) today, supported by myriad scientific, medical, and technological advancements, however we also face new problems as a result of the new way in which we die. We can no longer anticipate a peaceful waning at home with family. We know our lives will likely end in hospitals likely after we have endured grueling treatments to prolong life. We have to decide what decisions we want our loved ones, or care-givers, to make when we cannot choose for ourselves. We have to think about whether in any circumstances we would seek physician-assisted death. We know we face other questions as well, but we may not even know where to start. In the face of these decisions, we can feel daunted and afraid. The best remedy is information and planning. In this book, Gregory Eastwood - a physician who has cared for dying patients, served as an ethics consultant, and taught end of life issues to medical and other health profession students - draws from his substantial experience with patients and families to provide the information that will help us think clearly about the choices and issues we will face at the end of our own lives, and when faced with the deaths of our loved ones. With sensitivity and profound insight, Eastwood guides us through all the important questions about death and dying in straightforward, clear language, enhanced by real-life stories. Throughout, he shows us how we can take ownership of the way we want to die, when we must die, and feel more in control as death approaches. (shrink)

The relatively new practice of continuous sedation at the end of life (CS) is increasingly being debated in the clinical and ethical literature. This practice received much attention when a U.S. Supreme Court ruling noted that the availability of CS made legalization of physician-assisted suicide (PAS) unnecessary, as CS could alleviate even the most severe suffering. This view has been widely adopted. In this article, we perform an in-depth analysis of four versions of this ?argument of preferable alternative.? Our (...) goal is to determine the extent to which CS can be considered to be an alternative to PAS and to identify the grounds, if any, on which CS may be ethically preferable to PAS. (shrink)

In the end‐of‐life context, alleviation of the suffering of a distressed patient is usually seen as a, if not the, central goal for the medical personnel treating her. Yet it has also been argued that suffering should be seen as a part of good dying. More precisely, it has been maintained that alleviating a dying patient’s suffering can make her unable to take care of practical end‐of‐life matters, deprive her of an opportunity to ask questions about and find (...) meaning in and for her existence, and detach her from reality. In this article, I argue that the aims referred to either do not support suffering or are better served by alleviating it. When the aims would be equally well served by enduring suffering and relieving it, the latter appears to be the preferable option, given that the distress a patient experiences has no positive intrinsic value. Indeed, as the suffering can be very distressing, it may not be worth bearing even if that was the best way to achieve the aims: the distress can sometimes be bad enough to outbalance the worth of achieving the goals. Having considered an objection to the effect that a patient can have a self‐regarding moral duty to endure the distress she faces at the end of life, I conclude that the burden of proof is on the side of those who maintain that the suffering experienced at the end of life ought to be endured as a part of dying well. (shrink)

In 2016, France passed a major law that is unique in giving terminally ill and suffering patients the right to the controversial procedure of continuous deep sedation until death (CDS). In so doing, the law identifies CDS as a sui generis clinical practice, distinct from other forms of palliative sedation therapy, as well as from euthanasia. As such, it reconfigures the ethical debate over CDS in interesting ways. This paper addresses one aspect of this reconfiguration and its implications for the (...) intentions at work in this complex time at the end of life. The concept of intention is often considered central to the ethics of end-of-life care, but its role is recognized to be problematic, with charges of elusiveness and ambiguity. I aim to show that consideration of the French law affords a new understanding of the intentionality of CDS, and that in addition to the obvious importance of this for clarifying the ethics of the practice, it may suggest new ways of addressing the wider problem of ambiguous clinical intentions at end of life. (shrink)

Prologue: autumn aroma -- What's left? -- Arts of noticing -- Contamination as collaboration -- Some problems with scale -- Interlude: smelling -- After progress : salvage accumulation -- Working the edge "freedom" -- Open ticket, Oregon -- War stories -- What happened to the state? : two kinds of Asian Americans in translation -- Between the dollar and the yen -- From gifts to commodities and back -- Salvage rhythms : business in disturbance -- Interlude: tracking -- Disturbed beginnings (...) : unintentional design -- The life of the forest : coming up among pines -- History -- Resurgence -- Serendipity -- Ruin in gaps and patches -- In science as translation -- Flying spores -- Interlude: dancing -- In the middle of things -- Matsutake crusaders -- Ordinary assets -- Anti-ending : some people I met along the way -- Spore trail: the further adventures of a mushroom -- Notes -- Index. (shrink)

This second and concluding article of Mr. Wuellner's series recounts various attempts on the part of naturalistic philosophers and some eminent physicists to solve the riddle of entropy.They have so far been unsuccessful. The solutions of Johnstone, Maeterlinck, Bergson, Maeckel, Lodge, and MacMillan are cited.Of course, even if entropy is solved, the need of a Creator remains as strong as before.

Objectives Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. Methods The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary (...) hospital in Germany. The transcripts were subjected to qualitative content analysis. Results Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Conclusion Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment. (shrink)

Background:The process of dying in intensive care units is complex as the technological environment shapes clinical decisions. Decisions at the end of life require the involvement of patient, families and healthcare professionals. The degree of involvement can vary depending on the professional and social culture of the unit. Nurses have an important role to play in caring for dying patients and their families; however, their knowledge is not always sought.Objectives:This study explored nurses’ care practices at the end of (...) class='Hi'>life, with the objective of describing and identifying end of life care practices that nurses contribute to, with an emphasis on culture, religious experiences and professional identity.Research Design and context:Grounded theory was used. In all, 10 nurses from intensive care unit in two large hospitals in Bahrain were participated.Ethical Considerations:Approval to carry out the research was given by the Research Ethics Committee of the host institution, and the two hospitals.Findings:A core category, Death Avoidance Talk, was emerged. This was supported by two major categories: (1) order-oriented care and (2) signalling death and care shifting.Discussion:Death talk was avoided by the nurses, doctors and family members. When a decision was made by the medical team that a patient was not to be resuscitated, the nurses took this as a sign that death was imminent. This led to a process of signalling death to family and of shifting care to family members.Conclusion:Despite the avoidance of death talk and nurses’ lack of professional autonomy, they created awareness that death was imminent to family members and ensured that end of life care was given in a culturally sensitive manner and aligned to Islamic values. (shrink)

Health-care professionals in end-of-life care are frequently confronted with patients who seem to be ‘ambivalent’ about treatment decisions, especially if they express a wish to die. This article investigates this phenomenon by analysing two case stories based on narrative interviews with two patients and their caregivers. First, we argue that a respectful approach to patients requires acknowledging that coexistence of opposing wishes can be part of authentic, multi-layered experiences and moral understandings at the end of life. Second, caregivers (...) need to understand when contradictory statements point to tensions in a patient’s moral experience that require support. Third, caregivers should be careful not to negatively label or even pathologize seemingly contradictory patient statements. (shrink)

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

Objectives To determine the frequencies and types of limitation of medical treatment performed by physician members of the German Society for Palliative Medicine and to analyse the findings with respect to clinical and ethical aspects of end-of-life practices. Design Cross-sectional postal survey. Setting Data collection via the secretary of the German Society for Palliative Medicine using the German language version of the EURELD survey instrument. Subjects All 1645 physician members of the German Society for Palliative Medicine. Main outcome measures (...) Types and frequencies of limitation of treatment and possible determinants. Results 901 physicians participated in the study (response rate 55.8%). Participants reported limitation of treatment in 69.1% of cases. These decisions most often affected artificial nutrition (19%), chemotherapy (14%), antibiotics (11%) and medication other than antibiotics (11%). In the majority of eligible cases, physicians estimated the life-shortening effect of limitation of treatment to be <7 days. However, estimations differ depending on the medical measures in question. Bivariate statistical analysis indicated that withholding of treatment was performed significantly more frequently for patients aged ≥65 years (p=0.019). In addition, there were significant associations between the incidence of limitation of treatment and the different diseases reported by respondents as the underlying cause of death. Conclusion The findings of this study provide information on the current state of an ethically and clinically challenging aspect of clinical practice and can serve as a starting point for further interdisciplinary research on normative and empirical aspects of treatment decision-making at the end of life. (shrink)

BackgroundConcerns about decision making related to resuscitation have led to two important challenges in the courts resulting in new legal precedents for decision-making practice. Systematic research investigating the experiences of doctors involved in decisions about resuscitation in light of the recent changes in law remains lacking.AimTo analyse the practice of resuscitation decision making on hospital wards from the perspectives of doctors.DesignThe data presented in this paper were collected as part of a wider research study of end-of-life care in an (...) acute hospital setting. Data collection comprised ethnographic non-participant observation on two acute hospital wards and individual interviews with patients, relatives and healthcare professionals caring for patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach.ResultsDiscussions and decision making about resuscitation present many challenges for those involved on acute medical wards. The data highlight the potential for multiple interpretations of legal precedents, creating misunderstandings that may impact patient care in less positive ways.ConclusionsThis paper provides unique insights into how doctors respond to the changing medico-legal culture and the subsequent effects on patient care. It demonstrates how the juridification of medical practice can occur. It highlights the potential benefit of a structure to support clinicians, patients and relatives in discussing and navigating decisions around care at the end of life in line with the patient’s wishes and preferences. Recommendations for future research are made and legal ramifications are discussed. (shrink)

Background How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists. Methods Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts (...) were analysed with systematic text condensation, a qualitative analysis framework. Results Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control. Conclusions If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved. (shrink)

ABSTRACTThis report on end‐of‐life decision‐making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters.Chapter 1 reviews what is known about end‐of‐life care and opinions about assisted dying in Canada.Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death.Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order.Chapter 4 (...) reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form.Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. (shrink)

An ICU and Palliative Care specialist featured in the Netflix documentary Extremis offers a framework for a better way to exit life that will change our medical culture at the deepest level In medical school, no one teaches you how to let a patient die. Jessica Zitter became a doctor because she wanted to be a hero. She elected to specialize in critical care--to become an ICU physician--and imagined herself swooping in to rescue patients from the brink of death. (...) But then during her first code she found herself cracking the ribs of a patient so old and frail it was unimaginable he would ever come back to life. She began to question her choice. Extreme Measures charts Zitter's journey from wanting to be one kind of hero to becoming another--a doctor who prioritizes the patient's values and preferences in an environment where the default choice is the extreme use of technology. In our current medical culture, the old and the ill are put on what she terms the End-of-Life Conveyor belt. They are intubated, catheterized, and even shelved away in care facilities to suffer their final days alone, confused, and often in pain. In her work Zitter has learned what patients fear more than death itself : the prospect of dying badly. She builds bridges between patients and caregivers, formulates plans to allay patients' pain and anxiety, and enlists the support of loved ones so that life can end well, even beautifully. Filled with rich patient stories that make a compelling medical narrative, Extreme Measures enlarges the national conversation as it thoughtfully and compassionately examines an experience that defines being human. (shrink)

ABSTRACT This article considers three kinds of relations: being-there-alongside, waiting, and staying, that come into focus at or after the end of life. The first relation is explored in light of Heidegger’s and Levinas’s contrasting accounts of responsibility, the second in terms of Bergson’s notion of hesitation, and the third in relation to Winnicott’s description of a “holding environment.” The work serves as a plea for spaces and practices that support more generous, open-ended, and nuanced relations among those who (...) are dying and those who attend to and survive them. (shrink)

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

In his thought-provoking piece, ‘Expressivism at the Beginning and End of Life’, Philip Reed contrasts the application of the expressivist objection to the use of reproductive technologies with its application to interventions that bring about death. In the process of supporting his comparative conclusion, that ‘expressivism at the end of life is a much greater concern than at the beginning’, he makes some interesting observations and offers some convincing arguments. Further examination, however, shows that his arguments actually support (...) conclusions far beyond the modest one he intends to draw. The absurdity of these conclusions can be used to identify the flaws in Reed’s argument. Reed summarises the expressivist objection in the context of physician-assisted suicide as follows: > When we allow PAS for individuals who are terminally ill or facing some severe disease or disability, we send a message of disrespect to all individuals who face such adversities in that we imply that they are inferior or their lives are not worth living. Analogous arguments have been made about decisions to use reproductive technology to prevent the birth of people with disabilities. Reed describes a common rebuttal to the …. (shrink)

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

Continuous sedation until death is an increasingly common practice in end-of-life care. However, it raises numerous medical, ethical, emotional and legal concerns, such as the reducing or removing of consciousness, the withholding of artificial nutrition and hydration, the proportionality of the sedation to the symptoms, its adequacy in actually relieving symptoms rather than simply giving onlookers the impression that the patient is undergoing a painless 'natural' death, and the perception that it may be functionally equivalent to euthanasia. This book (...) brings together contributions from clinicians, ethicists, lawyers and social scientists, and discusses guidelines as well as clinical, emotional and legal aspects of the practice. The chapters shine a critical spotlight on areas of concern and on the validity of the justifications given for the practice, including in particular the doctrine of double effect. (shrink)

Background Studies describing physicians’ experiences with sedation at the end of life are indispensible for informed palliative care practice, but they are scarce. We describe the accounts of physicians from the USA and the Netherlands, two countries with different regulations on end-of-life decisions regarding their use of sedation.Methods Qualitative face-to-face interviews were held in 2007–2008 with 36 physicians , including primary care physicians and specialists. We applied purposive sampling and conducted constant comparative analyses.Results In both countries, the use (...) of sedation was described in diverse terms, especially in the USA, and was often experienced as emotionally challenging. Respondents stated different and sometimes multiple intentions for their use of sedation. Besides alleviating severe suffering, most Dutch respondents justified its use by stating that it does not hasten death, while most American respondents indicated that it might hasten death but that this was justifiable as long as that was not their primary intention. While many Dutch respondents indicated that they initiated open discussions about sedation proactively to inform patients about their options and to allow planning, the accounts of American respondents showed fewer and less-open discussions, mostly late in the dying process and with the patient's relatives.Conclusions The justification for sedation and the openness with which it is discussed were found to differ in the accounts of respondents from the USA and the Netherlands. Further clarification of practices and research into the effect and effectiveness of the use of sedation is recommended to enhance informed reflection and policy making. (shrink)