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)

Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since patients guide care in patient-centered care, and respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered care becomes more coherent, is strengthened, and could help practitioners to make better use of a principle of respect (...) for autonomy. Hence, its use appears promising to narrow the theory–practice gap. (shrink)

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)

Background: Legislative changes are resulting in assisted death as an option for people at the end of life. Although nurses’ experiences and perspectives are underrepresented within broader ethical discourses about assisted death, there is a small but significant body of literature examining nurses’ experiences of caring for people who request this option. Aim: To synthesize what has been learned about nurses’ experiences of caring for patients who request assisted death and to highlight what is morally at stake for nurses who (...) undertake this type of care. Design: Qualitative meta-synthesis. Methods: Six databases were searched: CINAHL, Medline, EMBASE, Joanna Briggs Institute, PsycINFO, and Web of Science. The search was completed on 22 October 2014 and updated in February 2016. Of 879 articles identified from the database searches, 16 articles were deemed relevant based on inclusion criteria. Following quality appraisal, 14 studies were retained for analysis and synthesis. Results: The moral experience of the nurse is (1) defined by a profound sense of responsibility, (2) shaped by contextual forces that nurses navigate in everyday end-of-life care practice, and (3) sustained by intra-team moral and emotional support. Discussion: The findings of this synthesis support the view that nurses are moral agents who are deeply invested in the moral integrity of end-of-life care involving assisted death. The findings further demonstrate that to fully appreciate the ethics of assisted death from a nursing standpoint, it is necessary to understand the broader constraints on nurses’ moral agency that operate in everyday end-of-life care. Ethical considerations: Research ethics board approval was not required for this synthesis of previously published literature. Conclusion: In order to understand how to enact ethical practice in the area of assisted death, the moral experiences of nurses should be investigated and foregrounded. (shrink)

The Belgian Act on Euthanasia came into force on 23 September 2002, making Belgium the second country—after the Netherlands—to decriminalize euthanasia under certain due-care conditions. Since then, Belgian nurses have been increasingly involved in euthanasia care. In this paper, we report a qualitative study based on in-depth interviews with 18 nurses from Flanders (the Dutch-speaking part of Belgium) who have had experience in caring for patients requesting euthanasia since May 2002 (the approval of the Act). We found that the care (...) process for patients requesting euthanasia is a complex and dynamic process, consisting of several stages, starting from the period preceding the euthanasia request and ending with the aftercare stage. When asked after the way in which they experience their involvement in the euthanasia care process, all nurses described it as a grave and difficult process, not only on an organizational and practical level, but also on an emotional level. “Intense” is the dominant feeling experienced by nurses. This is compounded by the presence of other feelings such as great concern and responsibility on the one hand, being content in truly helping the patient to die serenely, and doing everything in one’s power to contribute to this; but also feeling unreal and ambivalent on the other hand, because death is arranged. Nurses feel a discrepancy, because although it is a nice death, which happens in dignity and with respect, it is also an unnatural death. The clinical ethical implications of these findings are discussed. (shrink)