Protestant Theological University Amsterdam, Amsterdam, The Netherlands.
Laurens, Rotterdam, The Netherlands.
Alzheimers Dement. 2023 Aug;19(8):3688-3700. doi: 10.1002/alz.13094. Epub 2023 Apr 25.
To assess how families are involved in situations of euthanasia or physician assisted suicide (PAS) in dementia.
Systematic review searching literature in nine databases from inception up to October 2021. We included studies on family involvement in euthanasia from the perspective of persons with dementia and family caregivers. Themes were formulated through thematic analysis. The design was registered at Prospero (CRD42022298215).
We assessed 215 of 4038 studies in full text; 19 met the inclusion criteria of which 13 empirical studies. Themes included for people with dementia: being a burden; stage of dementia, and permissibility of euthanasia/PAS. Themes for family were the burden of care, responsibility toward the euthanasia or PAS wish, permissibility of euthanasia/PAS.
The wish for euthanasia/PAS arises in situations of burdensome care and fear of future deterioration. The family feels entrusted with the responsibility to enact upon the death wish. In shaping this responsibility, four roles of family can be distinguished: carer, advocate, supporter, and performer. Family as in need of support themselves is understudied.
评估家庭在痴呆症患者的安乐死或协助自杀（PAS）情况下的参与程度。
系统综述，从 9 个数据库中搜索自成立以来至 2021 年 10 月的文献。我们纳入了从痴呆症患者和家庭照顾者的角度研究家庭参与安乐死的研究。通过主题分析制定主题。该设计在 Prospero（CRD42022298215）上进行了注册。
我们评估了全文 4038 篇研究中的 215 篇，其中 19 篇符合纳入标准，包括 13 项实证研究。痴呆症患者的主题包括：成为负担；痴呆症的阶段和安乐死/PAS 的允许性。家庭的主题包括照顾的负担、对安乐死或 PAS 愿望的责任、安乐死/PAS 的允许性。
安乐死/PAS 的愿望出现在负担过重的护理和对未来恶化的恐惧的情况下。家庭感到受托有责任实施死亡愿望。在塑造这种责任时，可以区分家庭的四个角色：照顾者、倡导者、支持者和执行者。家庭本身作为需要支持的一方研究不足。
