Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a ‘right to die’. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD is legally (...) permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor’s freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups. (shrink)

In current Western societies, increasing numbers of people express their desire to choose when to die. Allowing people to choose the moment of their death is an ethical issue that should be embedded in sound clinical and legal frameworks. In the case of persons with dementia, it raises further ethical questions such as: Does the person have the capacity to make the choice? Is the person being coerced? Who should be involved in the decision? Is the person’s suffering untreatable? The (...) use of Advance Euthanasia Directives (AED) is suggested as a way to deal with end-of-life wishes of persons with dementia. However, in the Netherlands—the only country in which this practice is legal—the experiences of patients, doctors, and relatives have been far from satisfactory.Our paper analyses this complex ethical challenge from a Dignity-Enhancing Care approach, starting from the Dutch experiences with AED as a case. We first consider the lived experiences of the different stakeholders, seeking out a dialogical-interpretative understanding of care. We aim to promote human dignity as a normative standard for end-of-life care practices. Three concrete proposals are then presented in which this approach can be operationalised in order to deal respectfully with the end-of-life choices of persons with dementia. (shrink)

Although euthanasia and assisted suicide in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients. A survey was distributed amongst a random sample of Dutch 2641 citizens and 3000 physicians. Acceptance and conceivability of (...) performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed. Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient’s suffering is unbearable and without prospect and whether the request is well-considered. The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians’ support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria. (shrink)

Medical assistance in dying was legalized in Canada in 2016. As of July 2017, approximately 2149 patients have accessed MAID. There remains no national-level data on the perspectives of future physicians about MAID or its changing legal status. We provide evidence from a national survey of Canadian medical students about their opinions, intentions, and concerns about MAID. From October 2016 to July 2017, we distributed an anonymous online survey to all students at 15 of Canada’s 17 medical schools. The survey (...) collected data on respondent socio-demographic characteristics, features of their medical education, intentions for medical practice, and perspectives on MAID. We analyzed responses using univariate descriptive and stepwise multivariate logistic regression. In 1210 completed surveys, 71% of respondents reported being willing to provide MAID under a legal framework that permits it. Non-religious respondents reported greater willingness to participate in MAID than respondents of any religious affiliation. Frequency of religious attendance was inversely associated with willingness to provide MAID. Medical students born in Québec were more willing to provide MAID than respondents from other provinces. Age, sex, socioeconomic status, year of medical study, previous academic major, and rural/urban city of birth were not associated with willingness to provide MAID. As the current class of medical students becomes the first cohort of new physicians to enter Canada’s changing medical and legal landscape around MAID, our findings inform the public debate by examining attributes associated with support or opposition to the practice. (shrink)

Background Since the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide with their physicians and the way physicians experience the practice of EAS. Aim To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS. Methods We conducted a secondary analysis of in-depth interviews with 28 Dutch (...) physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed. Results Three themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched. Conclusions The perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society. (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)

The majority of Dutch physicians feel pressure when dealing with a request for euthanasia or physician-assisted suicide. This study aimed to explore the content of this pressure as experienced by general practitioners. We conducted semistructured in-depth interviews with 15 Dutch GPs, focusing on actual cases. The interviews were transcribed and analysed with use of the framework method. Six categories of pressure GPs experienced in dealing with EAS requests were revealed: emotional blackmail, control and direction by others, doubts about fulfilling the (...) criteria, counterpressure by patient’s relatives, time pressure around referred patients and organisational pressure. We conclude that the pressure can be attributable to the patient–physician relationship and/or the relationship between the physician and the patient’s relative, the inherent complexity of the decision itself and the circumstances under which the decision has to be made. To prevent physicians to cross their personal boundaries in dealing with EAS request all these different sources of pressure will have to be taken into account. (shrink)

The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for planning (...) medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient’s changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer’s disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients’ values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact. I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual’s directive would be an unacceptable form of discrimination towards those patients. (shrink)

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. (shrink)

In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the (...) experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia. We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. Eleven general practitioners and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society’s negative view of dementia in combination with the ‘right to die’ view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration. (shrink)