The involvement of family in the Dutch practice of euthanasia and physician assisted suicide: a systematic mixed studies review

Abstract

Background Family members do not have an official position in the practice of euthanasia and physician assisted suicide (EAS) 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. Methods 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. Results 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 (not) 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. Conclusion 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.

Relational autonomy in end-of-life care ethics: a contextualized approach to real-life complexities

“…In addition, empirical studies show that while some patients wish to have full control in the deliberative process, others prefer to defer decision-making to their family members or, at least, to consider their interests extensively [39,40]. In end-oflife care, healthcare staff and family are often intimately involved, all being individuals that may affect, and be affected by, the patient's autonomous decisions [21,41,42].…”

“…Relational theorists react against the current ethical and legal framework generally conceived of as a dyad between patient and physician; however, a patient-doctorfamily triad seems more appropriate in characterizing what actually happens in clinical practice [40]. In the triad model, the family is not necessarily perceived of as a threat to autonomy.…”

Relational influences on experiences with assisted dying: A scoping review

“…2 However, many have identified that the experiences of family members and HCPs of people who have been found eligible for, or have received, assisted dying need to be better understood and addressed in institutional policies and care plans. 1,3 –6…”

“Nothing Hurts Less Than Being Dead”: Psychological Pain in Case Descriptions of Psychiatric Euthanasia and Assisted Suicide from the Netherlands: « Rien ne fait moins mal qu’être mort »: La douleur psychologique dans les descriptions de cas d’euthanasie et de suicide assisté psychiatrique aux Pays-Bas

“…In the Netherlands, the first country to legalize euthanasia, EAS accounted for 4.6% of all deaths in 2015. 1 Conversely, in individuals with mental disorders, EAS remains a rare practice (in the Netherlands, about 1% of all EAS cases per year). 2 However, the awareness and consideration of this option by patients, 3 and the total number of granted cases are steadily growing, despite the lower probability of proceeding with EAS after the request by this population.…”