Roest Bernadette, Milota Megan, Leget Carlo
University of Humanistic Studies, Utrecht, The Netherlands.
Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
PLoS One. 2025 Aug 1;20(8):e0327917. doi: 10.1371/journal.pone.0327917. eCollection 2025.
In this article, we describe our empirical research that started out as an exploration of "family involvement" in the Dutch practice of euthanasia, in the broader context of end-of-life decision-making and care under guidance of GPs in the home-setting. Informed by care-ethical insights and narrative approaches to qualitative research, we performed an in-depth interview study with 18 close relatives of people with incurable metastasized cancer (9 prospective, 9 retrospective). We came to understand how relatives' involvement-not only in euthanasia but in any mode of dying-cannot be separated from relatives' efforts to navigate through many dimensions of life when the death of loved one is near. Relatives have to navigate different spaces, decision-dynamics and the unfolding of professional care, strong emotional experiences, and intimate relationships ("the I-you-we"). This study brought to the fore that relatives and patients first and foremost accompany each other on this journey. The role of the GP can be valuable but vulnerable, and relatives' broader social network and other professionals can be of enormous importance. The results of this study invited us to shift our perspective: it is not family members who get involved in euthanasia as a primarily medical affair. Instead, medical professionals are taking part in the profoundly social-relational experience of death and dying within families, whether that entails euthanasia or not. With this shift of perspective, specific practical and ethical questions start to receive more attention, for example questions about the available support for both patients and relatives regardless of the mode of dying.
在本文中,我们描述了我们的实证研究。该研究最初是在家庭环境中,在全科医生的指导下,对荷兰安乐死实践中的“家庭参与”进行的探索,这是在更广泛的临终决策和护理背景下进行的。受关怀伦理见解和定性研究的叙事方法启发,我们对18名晚期转移性癌症患者的近亲进行了深入访谈研究(9名前瞻性,9名回顾性)。我们开始理解亲属的参与——不仅在安乐死中,而且在任何死亡方式中——如何与亲属在亲人临近死亡时应对生活诸多方面的努力分不开。亲属必须在不同的空间、决策动态以及专业护理的展开、强烈的情感体验和亲密关系(“我-你-我们”)中周旋。这项研究凸显了亲属和患者在这段旅程中首先是相互陪伴的。全科医生的角色可能很有价值但也很脆弱,亲属更广泛的社会网络和其他专业人员可能非常重要。这项研究的结果促使我们转变视角:参与安乐死的并非主要作为医疗事务的家庭成员。相反,医疗专业人员正在参与家庭中死亡和临终的深刻社会关系体验,无论是否涉及安乐死。随着这种视角的转变,一些具体的实践和伦理问题开始受到更多关注,例如无论死亡方式如何,为患者和亲属提供何种可用支持的问题。