Family members do not have an official position in the practice of euthanasia and physician assisted suicide in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point (...) for further empirical and ethical inquiry. A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies. Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families’ experiences and grief after EAS. 4) Family and ‘the good euthanasia death’ according to Dutch physicians. Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making. (shrink)

Ethical arguments about assisted dying often focus on whether or not respect for an individual’s autonomy gives a reason to offer them an assisted death if they want it. In this paper, I present an argument for legalising assisted dying which appeals to the autonomy of people who don’t want to die. Adding that option can transform the nature of someone’s choice set, enabling them to pursue other options voluntarily where that would otherwise be harder or impossible. This does not (...) contradict the more familiar arguments for legalising assisted dying based on the autonomy of those who seek to die. But it does suggest that a wider constituency of support for that legislative change might be created by emphasising that one need not be in that position to be benefited by the change. (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)

In Switzerland, people can be granted access to assisted suicide on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person’s conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate (...) and manage it. This study explores the perspectives of care professionals and volunteers from a “right-to-die organization” on existential suffering as a motive for assisted suicide requests. A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used. The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one’s image completely defined someone’s identity. Society’s perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a “pure” existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering. Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a “toolbox” to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives. (shrink)

ZusammenfassungDas Lindern von Leiden ist eine zentrale Aufgabe der Medizin. Seit einigen Jahren ist eine verstärkte Inanspruchnahme des Leidensbegriffs im medizinischen Kontext zu beobachten. Eine Reflexion und Klärung dessen, was mit dem Begriff „Leiden“ und Begriffen wie „unerträgliches Leiden“ gemeint ist, bleibt aber weitgehend aus. Diese Tatsache wirft eine Reihe von theoretischen und praktischen Problemen auf, die im vorliegenden Beitrag identifiziert und diskutiert werden. Dazu werden zunächst die Schwierigkeiten bei der Anwendung des Leidensbegriffs in der medizinischen Praxis am Beispiel der (...) Indikationsstellung für eine tiefe und kontinuierliche palliative Sedierung dargestellt. Anschließend wird das Problem auf theoretischer Ebene angegangen. Es wird sich zeigen, dass im medizinischen Kontext mit einem Konzept des Leidens operiert wird, das a) eine starke normative Valenz hat, b) bei dem primär der subjektive Charakter des Leidens im Vordergrund steht und das c) inhaltlich nicht ausreichend differenziert ist. Anschließend werden zwei Konzepte des Leidens vorgestellt und im Hinblick auf ihre Operationalisierbarkeit im medizinischen Kontext befragt. Auf dem Hintergrund anthropologischer Vorannahmen, werden schließlich in einem letzten Abschnitt Perspektiven zum Umgang mit dem Leidensbegriff in der Medizin entwickelt. (shrink)

Volume 19, Issue 10, October 2019, Page 59-60.

In recent years a large empirical literature has appeared on suffering at the end of life. In this literature it is recognized that suffering has existential and social dimensions in addition to physical and psychological ones. The non-physical aspects of suffering, however, are still understood as pathological symptoms, to be reduced by therapeutical interventions as much as possible. But suffering itself and the negative emotional states it consists of are intentional states of mind which, as such, make cognitive claims: they (...) are more or less appropriate responses to the actual circumstances of the patient. These circumstances often are such that it would rather be a pathological symptom not to be sad and not to suffer. Suffering, therefore, is sometimes and to some extent a condition to be respected. Although I do not dispute that the alleviation of suffering is the main aim of palliative care, in pursuing that aim we should acknowledge a constraint of realism. (shrink)

It is not uncommon for patients with advanced disease to express a wish to hasten death. Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient’s personal and sociocultural background, or which necessarily imply taking concrete steps to ending one’s life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we analyse in (...) greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: assumptions related to patients’ moral understandings in terms of dignity, autonomy and authenticity; assumptions related to social interactions; assumptions related to the value of life; and assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients’ experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost. (shrink)

BackgroundFollowing several landmark rulings and increasing public support for physician-assisted death, in 2016, Canada became one of a handful of countries legalising medical assistance in dying (MAiD) with Bill C-14. However, the revised Bill C-7 proposes the specific exclusion of MAiD where a mental disorder is the sole underlying medical condition (MAiD MD-SUMC).AimThis review explores how some persons with serious and persistent mental illness (SPMI) could meet sensible and just criteria for MAiD under the Canadian legislative framework.MethodsWe review the proposed (...) Bill C-7 criteria (capacity, voluntariness, irremediability and suffering) as well as the nuances involved in separating a well-reasoned request for assisted suicide from what might be solely a manifestation of a SPMI.FindingsIn this paper, we argue against the absolute exclusion of patients with SPMIs from accessing MAiD. Instead, we propose that in some circumstances, MAiD MD-SUMC may be justifiable while remaining the last resort. Conducting MAiD eligibility assessments removes the need to introduce diagnosis-specific language into MAiD legislation. Competent psychiatric patients who request MAiD should not be treated any differently from other eligible candidates. Many individuals with psychiatric disorders will be incapable of consenting to MAiD. The only ethical option is to assess eligibility for MAiD on an individual basis and include as legitimate candidates those who suffer solely from psychiatric illness who have the decisional capacity to consent to MAiD. (shrink)

Opponents of voluntary euthanasia and physician-assisted suicide often maintain that the procedures ought not to be accepted because ending an innocent human life would both be morally wrong in itself and have unfortunate consequences. A gravely suffering patient can grant that ending his life would involve such harm but still insist that he would have reason to continue living only if there were something to him in his abstaining from ending his life. Though relatively rarely, the notion of meaning of (...) life has figured in recent medical ethical debate on voluntary euthanasia and physician-assisted suicide. And in current philosophical discussion on meaning of life outside the medical ethical debate on voluntary euthanasia and physician-assisted suicide several authors have argued that being moral and having a meaningful existence are connected to each other. In this article, I assess whether his intentionally refraining from causing the harm related to voluntary euthanasia and physician-assisted suicide would involve something to such a patient in the sense that it would promote the meaningfulness of his life. (shrink)

BackgroundFollowing the increased presence of the Right-to-Die Movement, improved end-of-life options, and the political and legal status of aid-in-dying around the globe, suicide tourism has become a promising alternative for individuals who wish to end their lives. Yet, little is known about this from the perspective of those who engage in the phenomenon.MethodsThis study applied the qualitative research approach, following the grounded theory tradition. It includes 11 in-depth semi-structured interviews with Israeli members of the Swiss non-profit Dignitas who contemplated traveling (...) to Switzerland for aid-in-dying.ResultsSeven themes emerged from the data analysis, including health and functioning; feelings regarding survivorship and existence; interacting with the health sector; attitudes regarding death and dying; suicide; choosing death; and choosing suicide tourism. A significant portion of the participants had experienced suicidal thoughts and had even previously attempted suicide, some more than once. Most of them referred to chronic illnesses, functional disability, and social isolation. They understand suffering within the subjective dimension, namely only by the person who is actually subjected to the disease, ailments, and disability. Participants regarded aid-in-dying in Switzerland as positive thanks to its guaranteed outcome: "beautiful death", compared to "disadvantaged dying" which places a burden on the participants' loved ones throughout the prolonged dying. Most of them do not necessarily want to have their loved ones beside them when they die, and they see no significant meaning in dying in a foreign country to which they have no emotional or civil attachment.ConclusionThe desirable approval or tragic refusal by Dignitas to participants' requests for suicide tourism enhances the paradox between the perception of aid-in-dying as a mechanism for fulfilling controlled death and its bureaucratic and materialistic characteristics specifically reflected in a paid, formalized approach to aid-in-dying that cultivate dependency and collaboration. (shrink)

The current empirical research and normative arguments on physician-assisted dying 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 epistemological paradigms, especially since the ‘empirical turn’ in bioethics. (shrink)

As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced; common conceptions (...) of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable. (shrink)

There has been contentious debate over the years about whether there are morally relevant similarities and differences between the three practices of continuous deep sedation until death, physician-assisted suicide, and voluntary euthanasia. Surprisingly little academic attention has been paid to a comparison of the uses of these practices in the two types of circumstances in which they are typically performed. A comparative domains of ethics analysis methodological approach is used in the paper to compare 1) the use of the three (...) practices in paradigm circumstances, and 2) the use of the practices in paradigm circumstances to their use in non-paradigm circumstances. The analytical outcomes suggest that a bright moral line cannot be demonstrated between any two of the practices in paradigm circumstances, and that there are significant, morally-relevant distinctions between their use in paradigm and non-paradigm circumstances. A thought experiment is employed to illustrate how these outcomes could possibly inform the decisions of hypothetical deliberators who are engaged in the collaborative development of assisted dying regulatory frameworks. (shrink)

Background Medical aid in dying (MAID) is legal in a number of countries, including some states in the U.S. While MAID is only permitted for terminal illnesses in the U.S., some other countries allow it for persons with psychiatric illness. Psychiatric MAID, however, raises unique ethical concerns, especially related to its effects on mental illness stigma and on how persons with psychiatric illnesses would come to feel about treatment and suicide. To explore those concerns, we conducted several focus groups with (...) persons with lived experience of mental illness.Methods We conducted three video-conference-based focus groups involving adults residing in the U.S. who reported a prior diagnosis of any psychiatric illness. Only participants who reported thinking that MAID for terminal illness was morally acceptable were included. Focus group participants were asked to respond to a series of four questions. Groups were facilitated by a coordinator who was independent of the research team.Results A total of 22 persons participated in the focus groups. The majority of participants had depression and anxiety disorders; no participants had psychotic disorders such as schizophrenia. Many participants strongly favored permitting psychiatric MAID, generally on the basis of respect for autonomy, its effects on stigma, and the severe suffering caused by mental illness. Others expressed concerns, typically related to difficulties in ensuring decision-making capacity and to the risk that MAID would be used in lieu of suicide.Conclusions Persons with a history of psychiatric illness, as a group, have a diverse array of views about the permissibility of psychiatric MAID, reflecting nuanced consideration of how it relates to the public perception of mental illness, stigma, autonomy, and suicide risk. (shrink)

The target article (Nelson et al. 2023) offers a valuable contribution to the “paradox of experience,” which was illustrated by using examples about access to unproven medical products and disabili...

Respect for human life is central to medicine. In terminal patients, refractory symptoms are a niche of palliative sedation. This paper identi es, based on scienti c evidence, the survival in patients who received palliative sedation as compared to those who didn’t. We conducted a search for systematic reviews from 2000 to 2016, which were methodologically analyzed, and the results were then compared. For methodological reasons, meta-analysis could not be performed. It is concluded that terminal palliative sedation does not shorten (...) patients’ lives. The implementation of the principle of double effect related to the possible shortening of life was reformulated; the unwanted evil is the loss of consciousness. (shrink)

This special issue of Theoretical Medicine and Bioethics takes up the question of palliative sedation as a source of potential concern or controversy among Christian clinicians and thinkers. Christianity affirms a duty to relieve unnecessary suffering yet also proscribes euthanasia. Accordingly, the question arises as to whether it is ever morally permissible to render dying patients unconscious in order to relieve their suffering. If so, under what conditions? Is this practice genuinely morally distinguishable from euthanasia? Can one ever aim directly (...) at making a dying person unconscious, or is it only permissible to tolerate unconsciousness as an unintended side effect of treating specific symptoms? What role does the rule of double effect play in making such decisions? Does spiritual or psychological suffering ever justify sedation to unconsciousness? What are the theological and spiritual aspects of such care? This introduction describes how the authors in this special issue wrestle with such questions and shows how each essay relates to the author’s individual position on palliative sedation, as developed in greater detail within his contribution. (shrink)