The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.
Shared decision-making in cancer care, where we move away from the paternalistic "the doctor knows best" attitude to involving the patient in decisions regarding her or his health, is now universally accepted in western societies. However, in many situations this is easier said than done. For instance, if the interaction with the patient is not performed in a skillful manner, shared decision-making can make the patient feel unsafe - shouldn't the specialist know how to treat a serious disease such as cancer? Why would the doctor ask the patient about this? In other cases, what the patient wants in unrealistic, for example a severely frail patient aged 85 years with more than one life-limiting comorbidity who is diagnosed with an advanced cancer and has a goal of living to be at least 100 years. And what does a patient with advanced dementia want in the context of a cancer disease? In this perspectives piece, we will describe different scenarios that may arise within geriatric oncology and shared decision-making, make recommendations about how to handle such situations, and provide some food for thought.
While in Western European countries, the end-of-life decisions have become a matter of public policy, this paper provides a detailed analysis of end-of-life decisions in Albania by focusing on instructional medical directives. The manuscript investigates the Albanian legal system, the documents published by the National Ethics Committee and the National Committee of Health, as the two main advisory public bodies on health issues, as well as the national medical jurisprudence and the Code of Medical Ethics. After emphasizing the importance of instructional medical directives and considering the international literature that has underlined the ethical principle of patient autonomy, this paper provides some policy suggestions. In the conclusion, this contribution highlights the importance of ad hoc rules governing instructional medical directives as well as the ethical principles and international literature as an instrument to fill the gap in the national system. In addition, particular attention is given to the application of ethical principles in end-of-life decisions in the current pandemic situation.
End-of-life (EOL) care has become an integral part of intensive care medicine and includes the exploration of possibilities for deceased organ and tissue donation. Donation physicians are specialist doctors with expertise in EOL processes encompassing organ and tissue donation, who contribute significantly to improvements in organ and tissue donation services in many countries around the world. Donation physicians are usually also intensive care physicians, and thus they may be faced with the dual obligation of caring for dying patients and their families in the intensive care unit (ICU), whilst at the same time ensuring organ and tissue donation is considered according to best practice. This dual obligation poses specific ethical challenges that need to be carefully understood by clinicians, institutions and health care networks. These obligations are complementary and provide a unique skillset to care for dying patients and their families in the ICU. In this paper we review current controversies around EOL care in the ICU, including the use of palliative analgesia and sedation specifically with regards to withdrawal of cardiorespiratory support, the usefulness of the so-called doctrine of double effect to guide ethical decision-making, and the management of potential or perceived conflicts of interest in the context of dual professional roles.
BACKGROUND: Assisted dying (AD) is currently of wide interest due to legislative change. Its relationship to other end-of-life practices such as palliative sedation (PS) is the subject of ongoing debate. The aim of this article is to describe the perspectives of a group of New Zealanders with life-limiting illness, who want or would consider AD, on the provision of end of life services, including assisted death, withdrawal of lifeprolonging treatment and symptom management with opioids or PS.
METHODS: We recruited 14 people with life-limiting illness and life expectancy of less than a year. Their mean age was 61 (range, 34-82) years and half were enrolled in Hospice. An additional six family members were also interviewed and included in analysis. We asked them about why they would consider AD if it was available. Interview transcripts were inductively analyzed consistent with thematic analysis. We compared the findings to prevailing ethical frameworks.
RESULTS: Most of the participants viewed current palliative care practices, such as pain relief with opioids and symptom management with PS, as hastening death, in contrast to some medical research which concludes that proportional therapeutic doses do not hasten death. Some participants did not agree with the 'doctrine of double effect' ('DDE') and saw such practices as 'slow euthanasia' and 'covert euthanasia'. They implied such practices were performed without patient consent, though they did not conceive of this as murder. Participants asserted that active and passive practices for ending life were morally equivalent, and preferred to choose the time of death over other legal means for death.
CONCLUSIONS: This article contributes to what is known about how patients perceive end-of-life practices that potentially hasten death. There is a divide in what medical ethics and most health professionals and what some patients consider active hastening death. Participants' perspective was consistent with a consequentialist framework whereas deontology often guides medical ethics at the end of life. Participants' challenge to the interpretation of legal end-of-life practices as AD represents an epistemic contest to the foundation of medical knowledge, authority and ethics and therefore carries implications for preferences in care, communication and palliative care practice.
OBJECTIVES: The purpose of this study is to map the characteristics of the existing medical literature describing the medications, settings, participants and outcomes of medical assistance in dying (MAID) in order to identify knowledge gaps and areas for future research.
DESIGN: Scoping review.
SEARCH STRATEGY: We searched electronic databases (MEDLINE, EMBASE, PsychINFO, CINAHL and CENTRAL), clinical trial registries, conference abstracts and professional guidelines from jurisdictions where MAID is legal, up to February 2020. Eligible report types included technical summaries, institutional policies, practice surveys, practice guidelines and clinical studies that describe MAID provision in adults who have provided informed consent for MAID.
RESULTS: 163 articles published between 1989 and 2020 met eligibility criteria. 75 studies described details for MAID administered by intravenous medications and 50 studies provided data on oral medications. In intravenous protocols, MAID was most commonly administered using a barbiturate (34/163) or propofol (22/163) followed by a neuromuscular blocker. Oral protocols most often used barbiturates alone (37/163) or in conjunction with an opioid medication (7/163) and often recommended using a prokinetic agent prior to lethal drug ingestion. Complications included prolonged duration of the dying process, difficulty in obtaining intravenous access and difficulty in swallowing oral agents. Most commonly, the role of physicians was prescribing (83/163) and administering medications (75/163). Nurses' roles included administering medications (17/163) and supporting the patient (16/163) or family (13/163). The role of families involved providing support to the patient (17/163) and bringing medications from the pharmacy for self-administration (4/163).
CONCLUSIONS: We identified several trends in MAID provision including common medications and doses for oral and parenteral administration, roles of healthcare professionals and families, and complications that may cause patient, family and provider distress. Future research should aim to identify the medications, dosages, and administration techniques and procedures that produce the most predictable outcomes and mitigate distress for those involved.
INTRODUCTION: End-of-life care is an essential task performed by most healthcare providers and often involves decision-making about how and where patients want to receive care. To provide decision support to healthcare professionals and patients in this difficult situation, we will systematically review a knowledge cluster of the end-of-life care preferences of older patients with multimorbidity that we previously identified using an evidence map.
METHODS AND ANALYSIS: We will systematically search for studies reporting end-of-life care preferences of older patients (mean age >=60) with multimorbidity (>=2 chronic conditions) in MEDLINE, CINAHL, PsycINFO, Social Sciences Citation Index, Social Sciences Citation Index Expanded, PSYNDEX and The Cochrane Library from inception to September 2019. We will include all primary studies that use quantitative, qualitative and mixed methodologies, irrespective of publication date and language.Two independent reviewers will assess eligibility, extract data and describe evidence in terms of study/population characteristics, preference assessment method and end-of-life care elements that matter to patients (eg, life-sustaining treatments). Risk of bias/applicability of results will be independently assessed by two reviewers using the Mixed-Methods Appraisal Tool. Using a convergent integrated approach on qualitative/quantitative studies, we will synthesise information narratively and, wherever possible, quantitatively.
ETHICS AND DISSEMINATION: Due to the nature of the proposed systematic review, ethics approval is not required. Results from our research will be disseminated at relevant (inter-)national conferences and via publication in peer-reviewed journals. Synthesising evidence on end-of-life care preferences of older patients with multimorbidity will improve shared decision-making and satisfaction in this final period of life.
Physician-assisted suicide (PAS) and euthanasia can be debated from ethical and legal perspectives, and there are a variety of views regarding their acceptability and usefulness. Religion is considered an important factor in determining attitudes towards such practices. This narrative review aims to provide an overview of the Islamic perspective on PAS and euthanasia and explore the Islamic approach in addressing the related issues. The PubMed database was searched to retrieve relevant articles, then the references listed in the selected articles were checked for additional relevant publications. Additionally, religious books (Quran and hadith) and legal codes of selected countries were also consulted from appropriate websites. The Islamic code of law discusses many issues regarding life and death, as it considers any act of taking one's life to be forbidden. Islam sanctifies life and depicts it as a gift from God (Allah). It consistently emphasises the importance of preserving life and well-being. Therefore Muslims, the followers of Islam, have no right to end their life. All Islamic doctrines consider PAS and euthanasia to be forbidden. However, if the patient has an imminently fatal illness, withholding or withdrawing a futile medical treatment is considered permissible. From a legal perspective, Islamic countries have not legalised PAS and euthanasia. Such practices are therefore considered suicides when patients consent to the procedure, and homicides when physicians execute the procedure.
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions.
DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed.
SETTING: The Netherlands.
PARTICIPANTS: 64 parents of 44 children.
RESULTS: Parents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person.
CONCLUSIONS: The barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.
BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.
MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.
CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
As left ventricular assist device (LVAD) technology continues to offer longer and better lives to patients with advanced heart failure, it also redefines how these patients die. This evolving dying process is unfamiliar to many clinicians and can be distressing for patients and their caregivers. No element of this process is more visceral or immediate than the act of withdrawing LVAD support, particularly for a patient who is awake and interactive. Despite ongoing improvement in survival and functional outcomes, LVAD patients frequently experience deaths characterized by distress, confusion, and a lack of control that fail to meet many of the criteria for high-quality end-of-life care.
Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.
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.
L'ouvrage aborde des problèmes majeurs de l'éthique médicale actuelle. Il constate que dans le cadre de la santé, pour régler les conflits, on a besoin de recourir à une diplomatie : respectueuse de la loi, l'éthique ne se réfère pas, comme les morales et les religions, à des valeurs transcendantes. S'appuyant sur divers exemples - le sang, les machines - l'auteur montre comment l'éthique médicale affronte des situations dans lesquelles la rationalité ne peut que composer avec des éléments d'ordre symbolique.
Sont abordés également quelques problèmes posés par la robotique et l'informatique : loin de les proscrire, on cherche à leur trouver une juste place à l'intérieur d'un nouvel humanisme.
BACKGROUND: In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.
MAIN TEXT: In this paper, we analyse the ethical relationship between legislative "safeguards" and equal access. Drawing primarily on Ruger's model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients.
CONCLUSIONS: While safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access.
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.
PURPOSE OF REVIEW: I review ethical and legal challenges for end of life (EOL) care in dementia. Is access to hospice care for dementia patients impacted by Medicare's terminal prognosis requirement? Are dementia-specific advance directives warranted? How does state legislation affect dementia patients' EOL options? Should dementia patients' be able to refuse orally ingested food and fluids by advance directive?
RECENT FINDINGS: The difficulty of predicting time to death in dementia inhibits access to Medicare hospice benefits. Efforts have been made to create dementia-specific advance directives. Advance refusal of artificial nutrition and hydration are common, but the issue of oral ingestion of food and fluids by dementia patients remains controversial. Medicare's hospice benefit should be made more accessible to dementia patients. State advance directive threshold definitions should be broadened to include dementia, and capacitated persons who refuse in advance orally ingested food and fluids should have their choices honored.
BACKGROUND: Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.
METHODS: Using PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.
RESULTS: Fifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.
CONCLUSIONS: Three main conclusions were reached. First, literature on relational autonomy tends to be more a 'reaction against' an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations.
This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older-a small but important subsection of the population our hospital serves-we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work.