This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
A culture of dying characterized by end-of-life care provided by strangers in institutional settings and diminished personal control of the dying process has been a catalyst for the increasing prevalence of legalized physician-assisted dying in the United States and medically-assisted dying in Canada. The moral logic of the right to die that supports patient refusals of life-extending medical treatments has been expanded by some scholarly arguments to provide ethical legitimation for hastening patient deaths either through physician-prescribed medications or direct physician administration of a lethal medication. The concept of medical-assisted dying increases the role and power of physicians in ending life and allows patients who are not terminally ill, or who have lost decision-making capacity, or who are suffering from a irremediable medical condition to have access to medical procedures to hasten death. This extended moral logic can be countered by ethical objections regarding the integrity of the patient-physician relationship and last resorts in ending life, professional concerns about medicalization and a diminished identity of medicine as a healing profession, and social responsibilities to provide equal access to basic health care and to hospice care.
Le droit pénal médical est constitué de l'ensemble des règles répressives qui permettent et organisent la sanction pénale du médecin ayant commis une infraction à l'occasion ou dans l'exercice de sa profession. Alors que la médecine apparaît aujourd'hui de plus en plus technique, spécialisée et surtout efficace, le malade, jadis protégé par le paternalisme médical, est devenu au xxie siècle un patient autonome qui n'hésite plus à revendiquer des droits que le législateur contemporain lui a accordés. Face à un droit pénal médical qui occupe désormais une place prégnante, y compris sur la scène médiatique, l'ambition de cet ouvrage est de montrer la réalité du risque pénal médical et d'exposer la norme pénale que le médecin doit respecter afin de lui donner les moyens de comprendre le raisonnement du juge pénal en cas de mise en cause.
À jour de la jurisprudence la plus récente et des dernières évolutions législatives (lois relatives à la fin de vie, à l'organisation et à la transformation du système de santé, à la bioéthique), il ambitionne également de provoquer la réflexion du lecteur sur des sujets sensibles et d'actualité (grandes affaires de santé publique, affaire Lambert) afin de montrer que le droit pénal médical, aussi précoce soit-il, est un droit qui se prête déjà volontiers à la généralisation, à la logique et à la cohérence. L'ouvrage est destiné à tous ceux qui ont vocation à appliquer le droit pénal médical qu'ils soient médecins, juristes, avocats ou magistrats. Il intéressera également les étudiants des facultés de droit et de médecine.
For nearly five years, bioethicists and neurologists debated whether Jahi McMath, an African American teenager, was alive or dead. While Jahi's condition provides a compelling study for analyzing brain death, circumscribing her life status to a question of brain death fails to acknowledge and respond to a chronic, if uncomfortable, bioethics problem in American health care—namely, racial bias and unequal treatment, both real and perceived. Bioethicists should examine the underlying, arguably broader social implications of what Jahi's medical treatment and experience represented. On any given day, disparities in the quality of health care and health outcomes for people of color in comparison to whites are evidenced in American hospitals and clinics. These disparities are not entirely explained by differences in patient education, insurance status, employment, income, expressed preference for treatments, and severity of disease. Instead, research indicates that, even for African Americans able to gain access to health care services and navigate institutional nuances, disparities persist across a broad range of services, including diagnostic screening and general medical care, mental health diagnosis and treatment, pain management, HIV-related care, and treatments for cancer, heart disease, diabetes, and kidney disease.
At its inception, "brain death" was proposed not as a coherent concept but as a useful one. The 1968 Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death gave no reason that "irreversible coma" should be death itself, but simply asserted that the time had come for it to be declared so. Subsequent writings by chairman Henry Beecher made clear that, to him at least, death was essentially a social construct, and society could define it however it pleased. The first widely endorsed attempt at a philosophical justification appeared thirteen years later, with a report from the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and a seminal paper by James Bernat, Charles Culver, and Bernard Gert, which introduced the insightful tripartite scheme of concept, criterion, and tests for death. Their paper proposed that the correct concept of death is the "permanent cessation of functioning of the organism as a whole," which tenuously remains the mainstream concept to this day. In this essay, I focus on this mainstream concept, arguing that equating brain death with death involves several levels of incoherence: between concept and criterion, between criterion and tests, between tests and concept, and between all of these and actual brain death praxis.
Since the 1960s, organ procurement policies have relied on the boundary of death-advertised as though it were a factual, value-free, and unobjectionable event-to foster organ donation while minimizing controversy. Death determination, however, involves both discoveries of facts and events and decisions about their meaning (whether the facts and events are relevant to establish a vital status), the latter being subjected to legitimate disagreements requiring deliberation. By revisiting the historical origin of the dead donor rule, including some events that took place in France prior to the report by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, I want to recall that those who first promoted the DDR did not take into account any scientific rationale to support the new proposed criteria to determine death. Rather, through a process of factual re-semantization, they authorized themselves to decide about the meaning of death in order to implicitly prioritize the interests of organ recipients over those of dying people.
In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath.
While many people are skeptical that we can harm the dead, much of our discourse depends on it. I defend the claim that we can harm the dead by presenting a new way to think about how the dead can be harmed, and I show that the reasons we can harm the dead shed light on many issues in bioethics, including organ donation, posthumous reproduction, end-of-life decisions, and advance directives for dementia.
La vulnérabilité est un thème qui est sur le devant de la scène actuellement. L'auteur s'interroge sur cette notion et sur ce qu'elle implique sur notre condition d'êtres humains et de notre rapport au corps.
It has been fifty years since a report by an ad hoc committee of Harvard Medical School ushered in the widespread adoption of brain death as a definition of death. Yet brain death remains disputed as an acceptable definition within bioethics. The continuous debate among bioethicists has had three key recurring features: first and foremost, argument over alleged flaws in the conceptual logic and consistency of the "whole-brain" approach as a description of the meaning of death; second, efforts to fix perceived limitations of brain death-based practices to optimize transplantation, especially given that transplantation was the presumed original intended purpose of the definition; and third, a basic unease provoked by the experience of using the criteria and managing a body in this state of "irreversible coma." The third feature is the one I find the most compelling, though it is less explored, and it persists because of the failures of the prior two. Brain death remains strange-to medical personnel, families, philosophers. That is not because it hasn't yet been logically argued well enough or conceptually framed adequately, but because those things don't matter as much to resolving this strangeness as the bioethical approach to brain death over the last fifty years has assumed it does. It is necessary to look to other things that can anchor the aims of medicine in the midst of this strangeness.
Five decades ago, Henry Knowles Beecher, a renowned professor of research anesthesiology, sought to solve a problem created by modern medicine. The solution proposed by Beecher and his colleagues on the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death proved very influential.1 Indeed, other contemporaneous medical developments magnified its significance yet also made the solution it offered somewhat problematic. As we mark this fiftieth anniversary, at a time when concerns about the conceptual model on which its recommendations rested are being voiced by critics from medicine as well as philosophy, it is worthwhile to view the committee's report in relation to the problem that prompted its existence as well as the one to which it was quickly applied.
The bioethical, professional, and policy discourse over brain death criteria has been portrayed by some scholars as illustrative of the minimal influence of religious perspectives in bioethics. Three questions then lie at the core of my inquiry: What interests of secular pluralistic societies and the medical profession are advanced in examining religious understandings of criteria for determining death? Can bioethical and professional engagement with religious interpretations of death present substantive insights for policy discussions on neurological criteria for death? And finally, how extensive should the scope of policy accommodations be for deeply held religiously based dissent from neurological criteria for death? I begin with a short synopsis of a recent case litigated in Ontario, Canada, Ouanounou v. Humber River Hospital, to illuminate this contested moral terrain.
Twenty years ago, the passage of the Oregon Death with Dignity Act prompted vigorous debate in my bioethics classrooms; now, the issue barely generates a ripple. Instead, we focus on an issue my students' generation will confront, as illustrated by an amendment to the ODDA introduced in the last Oregon legislative session that would have effectively rescinded two core procedural safeguards: patient decision-making capacity when requesting life-ending medication and self-administration of the medication. Patient requests for medication could be stipulated on an advance directive that appoints an "expressly identified agent" authorized, in the event of loss of decision-making capacity, "to collect and to administer to the patient the prescribed medication." The amendment heralds a shift from physician-assisted death to medical aid in dying and from prescriptions ingested by patients to life-ending medication administered by a physician or even by the patient's "agent." This prospect generates a bit more angst amongst my students, but their acculturation in the ethics of individual choice prevails. Our discussion about the ethics of medical aid in dying inescapably turns to a deeper issue: is there a professional ethos independent of autonomy?
Comment en sommes-nous arrivés, comme société, à envisager de proposer « la mort donnée » comme un service légal au titre de la liberté et de la dignité des hommes ? Cette « césarienne de la mort » qui consisterait à faire mourir les gens à l’heure dite, sur rendez-vous, de façon médicalisée et réglée (comme on parle de la chirurgie réglée face à la chirurgie d’urgence). Cédant à la tentation de nous rendre maître de la mort en la provoquant par anticipation. Parce qu’à une vision globale de la vie humaine, nous substituons une vision morcelée, réduite à des particules élémentaires, fournie par la numérisation de l’univers.
Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
Providing care to cancer patients in resource-poor settings often demands complex trade-offs regarding resource allocation. It is estimated that over 60% of all cancer deaths worldwide occur in low- and middle-income countries, where channels to care and appropriate symptom management interventions are overstressed or obsolete. Concepts of distributive justice underlie much of global health policy. As appetites for expanding global palliative care services increase, so do questions of fair and culturally appropriate distribution. The ethical principle of distributive justice underpins questions of resource allocation at a fundamental level. One of the most challenging concepts for health care workers immersing in cross-cultural contexts is the idea that ethics are somewhat malleable; they shape and are shaped by the unique sociopolitical, economic, intracultural, and power dynamics of a particular setting. In this article, we use the case of a young woman diagnosed with terminal cancer in an underserved community in rural Uganda to illustrate the conflicting concepts of fairness, which dictate distribution of scarce resources in low- and middle-income countries. Notions of distributive justice vary across cultural, societal, and even individual norms, with some definitions allowing for discrimination based on merit or need. Resource allocation in the absence of cultural humility or a genuine willingness to understand decision-making priorities in a given culture can contribute to inequity and may have harmful consequences.
Les nouvelles législations en matière de fin de vie que ce soit en France ou en Belgique placent les soignants en dehors de leurs repères habituels, dans ce que les auteurs nomment une expérience de la transgression. Ces derniers reviennent sur le vécu des équipes dans ce type de situations.
While people are still alive, we owe them respect. Yet what, if anything, do we owe the newly dead? This question is an urgent practical concern for aged societies, because older people die at higher rates than any other age group. One novel way in which Japan, the frontrunner of aged societies, meets its need to accommodate high numbers of newly dead is itai hoteru or corpse hotels. Itai hoteru offer families a way to wait for space in over-crowded crematoriums while affording an environment conducive to grieving. Drawing on conversations with itai hoteru employees, we delineate the values this contemporary death practice expresses and show how these values comprise part of the broader idea of a good death. A good death implies duties on both sides of death's divide: to both the dying and the newly dead.
La révision imminente de la loi bioéthique ouvre un moment où tout est possible. Cet essai éclaire l'urgence éthique qu'imposent certaines situations humaines souvent dramatiques. Face aux questions si complexes qu'elles soulèvent, il convie à abandonner le manteau du péremptoire et à endosser la responsabilité du faire réfléchir. Fin de vie, assistance médicale à la procréation, gestation pour autrui animent le débat public et la controverse. Mais interruptions volontaires de grossesse par exemple pour raisons psychosociales, ou contraception définitive, sont plus méconnues. La volonté est de les sortir de l'obscurité où éthiquement elles se meurent.
Do not attempt cardiopulmonary resuscitation decisions (DNACPR) are considered good medical practice for those dying at the end of natural life. They avoid intrusive and inappropriate intervention. Historically, informing patients of these decisions was discretionary to avoid undue distress. Recent legal rulings have altered clinical guidance: disclosure is now all but obligatory. The basis for these legal judgments was respect for the patient's autonomy as an expression of their human rights. Through critical analysis, this paper explores other bioethical considerations and the potential harms if they are ignored. Arguably, disclosure of DNACPR status on its own will do little to improve patient experience. A focus on good communication with those identified as approaching end-of-life will facilitate personalized care. Discussions around DNACPR may still occur, but only if likely to be beneficial and at a patient-appropriate pace (not dictated by the need to activate the decision).