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)

All articles in May 2019’s special issue of Bioethics offer profound insights into the issue of “being a burden to others” in relation to wishes to die, which are highly relevant for ethical debates about end‐of‐life care and physician‐assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon “being a burden” in relation to wishes to die and we will show how this analysis could benefit from a care ethical (...) approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of “being a burden” therefore needs to take institutional and societal norms and structures into account, in addition to first‐person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon “being a burden” as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on “being a burden” in relation to the practice of physician‐assisted dying in the Netherlands. (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 use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical (...) research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics. (shrink)