当所爱的人(安乐死)即将死亡时,如何驾驭生活:一项来自荷兰的叙述性访谈研究。

IF 2.6 3区 综合性期刊 Q1 MULTIDISCIPLINARY SCIENCES
PLoS ONE Pub Date : 2025-08-01 eCollection Date: 2025-01-01 DOI:10.1371/journal.pone.0327917
Bernadette Roest, Megan Milota, Carlo Leget
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引用次数: 0

摘要

在这篇文章中,我们描述了我们的实证研究,该研究开始于对荷兰安乐死实践中的“家庭参与”的探索,在更广泛的背景下,在家庭环境中,在全科医生的指导下,临终决策和护理。根据护理伦理的见解和定性研究的叙述方法,我们对18名无法治愈的转移性癌症患者的近亲进行了深入的访谈研究(9名前瞻性研究,9名回顾性研究)。我们开始明白,亲人的参与——不仅是安乐死,还有任何一种死亡方式——都离不开亲人在亲人离世之际努力应对生活的方方面面。亲属们必须驾驭不同的空间、决策动力和专业护理的展开、强烈的情感体验和亲密关系(“我-你-我们”)。这项研究表明,在这一过程中,亲属和患者首先要相互陪伴。全科医生的作用可能很有价值,但也很脆弱,而亲属更广泛的社交网络和其他专业人士可能非常重要。这项研究的结果让我们改变了我们的观点:并不是家庭成员把安乐死作为一项主要的医疗事务来参与。相反,医疗专业人员正在参与深刻的社会关系死亡体验,以及家庭内部的死亡,无论这是否需要安乐死。随着这种观点的转变,具体的实际和伦理问题开始受到更多的关注,例如,无论死亡方式如何,对患者和亲属的可用支持的问题。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Navigating life when a loved one's (euthanasia) death is near: A narrative interview study from the Netherlands.

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.

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来源期刊
PLoS ONE
PLoS ONE 生物-生物学
CiteScore
6.20
自引率
5.40%
发文量
14242
审稿时长
3.7 months
期刊介绍: PLOS ONE is an international, peer-reviewed, open-access, online publication. PLOS ONE welcomes reports on primary research from any scientific discipline. It provides: * Open-access—freely accessible online, authors retain copyright * Fast publication times * Peer review by expert, practicing researchers * Post-publication tools to indicate quality and impact * Community-based dialogue on articles * Worldwide media coverage
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