OBJECTIVE: to map the available evidence on the main topics investigated in palliative care in primary health care.
METHOD: scoping review type study carried out in five databases, including original articles, based on the descriptors palliative care, palliative care at the end of life, terminal care, terminal state, primary health care and their respective acronyms and synonyms, totaling 18 publications. The extraction of data from primary studies was performed using an instrument produced by the authors and which allowed the construction of the categories presented.
RESULTS: 18 publications were included in this review. Among the most studied themes are the difficulties of the teams regarding the continuity of care in the health network; the importance of in-service education by the multidisciplinary team; professional unpreparedness; bioethics; the validation and application of scales for prognosis and care for some pathologies such as cancer and diabetes; among others.
CONCLUSION: it became evident that palliative care in primary health care has been gradually developed, but it is necessary to consider the organization of primary health care and the social policies that support or weaken it, being considered a complex challenge.
Background: Euthanasia and assisted suicide (EAS) based on a psychiatric disorder (psychiatric EAS) continue to pose ethical and policy challenges, even in countries where the practice has been allowed for years. We conducted a systematic review of reasons, a specific type of review for bioethical questions designed to inform rational policy-making. Our aims were twofold: (1) to systematically identify all published reasons for and against the practice (2) to identify current gaps in the debate and areas for future research.
Methods: Following the PRISMA guidelines, we performed a search across seven electronic databases to include publications focusing on psychiatric EAS and providing ethical reasons. Reasons were grouped into domains by qualitative content analysis.
Results: We included 42 articles, most of which were written after 2013. Articles in favor and against were evenly distributed. Articles in favor were mostly full-length pieces written by non-clinicians, with articles against mostly reactive, commentary-type pieces written by clinicians. Reasons were categorized into eight domains: (1) mental and physical illness and suffering (2) decisional capacity (3) irremediability (4) goals of medicine and psychiatry (5) consequences for mental health care (6) psychiatric EAS and suicide (7) self-determination and authenticity (8) psychiatric EAS and refusal of life-sustaining treatment. Parity- (or discrimination-) based reasons were dominant across domains, mostly argued for by non-clinicians, while policy reasons were mostly pointed to by clinicians.
Conclusions: The ethical debate about psychiatric EAS is relatively young, with prominent reasons of parity. More direct engagement is needed to address ethical and policy considerations.
Background: Humanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care—a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, the WHO released a guide on ‘Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises’—the first guidance on the topic by an international body.
Aims: This paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances.
Implications: In parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance.
Le mot "éthique", lorsqu’il est appliqué aux sciences et à la médecine du vivant, semble recouvrir indifféremment l’"éthique médicale" proprement dite, c’est-à-dire l’exigence d’un certain comportement de la médecine au service du malade, et la bioéthique, qui est la mise en forme, à partir d’une recherche pluridisciplinaire, d’un questionnement sur les conflits de valeurs suscités par le développement techno-scientifique dans le domaine du vivant. Ces deux termes ont, du reste, des champs d’application voisins ou croisés lorsqu’il s’agit du don d’organe ou de l’assistance à la procréation.
Didier Sicard clarifie les enjeux respectifs et communs de l’éthique médicale et de la bioéthique. Il met ainsi en perspective les notions de consentement, de préservation du secret ou encore de non-discrimination, essentielles à cette éthique appliquée.
The current empirical research and normative arguments on physician-assisted dying (PAD) in the Netherlands seem insufficient to provide ethical guidance to general practitioners in the practice of PAD, due to a gap between the evidence and arguments on the one hand and the uncertainties and complexities as found in everyday practice on the other. This paper addresses the problems of current ethical arguments and empirical research and how both seem to be profoundly influenced by the Dutch legislative framework on PAD and a certain view on ethics. Furthermore, the paper elaborates on how other approaches to empirical research in bioethics, such as found in the broad field of narrative research, could supplement the empirical and ethical evaluation of PAD in the Netherlands. This paper also addresses the challenging question of how empirical data-in this case narratives-relate to normativity. The paper is written in the form of a personal narrative of the author, a young Dutch general practitioner and researcher in bioethics. This style is intentionally chosen, to illustrate how work context and professional background influence the observations one makes and the questions one may ask about the topic of PAD. In addition, by using this style, this paper not only gives a different perspective on a much-contested bioethical issue, but also on the challenges faced when a physician-bioethicist has to navigate different disciplinary fields and (moral) epistemological paradigms, especially since the 'empirical turn' in bioethics.
End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dignity. Unbearable suffering, decisional competence, and awareness of memory deficits are among the clinical considerations that physicians should incorporate during the end-of-life decision-making process. However, as other societies introduce legislature granting the right of PAD, new social determinants should be considered; Mexico City is an example. Current perspectives regarding advance euthanasia directives (AED) and PAD in patients with dementia are evolving. A new perspective that hinges on the role of the family and geriatric assent should help culturally heterogeneous societies in the transition of their public health care policies regarding end-of-life choices.
To determine when the life of a human organism begins, Mark T. Brown has developed the somatic integration definition of life. Derived from diagnostic criteria for human death, Brown's account requires the presence of a life-regulation internal control system for an entity to be considered a living organism. According to Brown, the earliest point at which a developing human could satisfy this requirement is at the beginning of the fetal stage, and so the embryo is not regarded as a living human organism. This, Brown claims, has significant bioethical implications for both abortion and embryo experimentation. Here, we dispute the cogency of Brown's derivation. Diagnostic criteria for death are used to determine when an organism irreversibly ceases functioning as an integrated whole, and may vary significantly depending on how developed the organism is. Brown's definition is derived from a specific definition of death applicable to postnatal human beings, which is insufficient for generating a general definition for human organismal life. We have also examined the bioethical implications of Brown's view, and have concluded that they are not as significant as he believes. Whether the embryo is classified as a human organism is of peripheral interest-a far more morally relevant question is whether the embryo is a biological individual with an identity that is capable of persisting during development.
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.
Context: There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end-of-life (DIALs), an indicator of quality care.
Objective: To examine how DIALs have been operationally defined, and identify areas where evidence is biased or inadequate to inform practice.
Methods: We conducted a scoping review of the English language literature published from 1/1/04-6/30/17. Articles were eligible if they reported data on =2 DIALs within 100 days of the deaths of adults =18 years old. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases were explored.
Results: We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly on cancer (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., ICU admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs.
Conclusions: Unwarranted variation in DIALs assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIALs assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.
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.