1 Palliative and Supportive Care Service, Department of Medicine, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland.
2 Palliative and Supportive Care Clinic, Oncology Institute of Southern Switzerland, Bellinzona, Switzerland.
Palliat Med. 2019 Sep;33(8):1091-1105. doi: 10.1177/0269216319857630. Epub 2019 Jun 27.
Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying.
To systematically review family experiences of assisted dying.
A systematic literature review using thematic synthesis.
MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers.
Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) , (2) , (3) , (4) and (5) . The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying.
Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions.
家庭在协助死亡方面的经验尚未得到充分研究，在有关协助死亡的临床指南中，家庭很少被考虑在内。
系统回顾家庭在协助死亡方面的经验。
使用主题综合法的系统文献回顾。
MEDLINE、Embase、CINAHL、AMED（补充与综合医学）和 PsycINFO 数据库（1992 年 1 月至 2019 年 2 月）。纳入研究调查了家庭在合法协助死亡实践中的经验。我们排除了在管辖权内合法化之前的研究、二次数据分析和意见论文。
符合纳入标准的文章有 19 篇。出版物来自四个国家：荷兰、美国（俄勒冈州、华盛顿州和佛蒙特州）、加拿大和瑞士。荷兰的研究主要调查了家庭在安乐死中的参与，而瑞士和美国的研究仅报告了协助自杀。11 项研究采用定性设计，主要采用深入访谈；7 项为回顾性调查。五个分析主题代表了家庭在协助死亡方面的经验：（1） 家庭在协助死亡中的角色和决策；（2） 家庭对协助死亡的态度和情感反应；（3） 家庭与医疗保健提供者的沟通和关系；（4） 家庭对协助死亡的实施和过程的体验；（5） 家庭在协助死亡后的心理和情感支持需求。结果表明，家庭可以非常参与支持寻求协助死亡的患者，前提是保持开放的沟通。家庭的参与似乎受到他们所在国家立法类型和家庭对协助死亡社会可接受性的看法的影响。
我们的数据证实，所有司法管辖区的家庭都参与了协助自杀的决策和实施。家庭的需求研究不足，临床指南应纳入有关如何考虑家庭需求以及如何为他们提供基于证据的量身定制干预措施的建议。
