Department of Psychiatry and Psychotherapy, Centre for Cognitive Disorders, School of Medicine, Technical University of Munich, Munich, Germany.
Clinical Center for Psychiatry, Psychotherapy, Psychosomatic Medicine, Geriatrics and Neurology, kbo-Inn-Salzach-Klinikum, Wasserburg am Inn, Germany.
Gerontologist. 2024 Apr 1;64(4). doi: 10.1093/geront/gnad119.
German legislation establishes advance directives (ADs) as legally binding instruments that all involved parties need to adhere to. This applies also to family members who have been authorized as official surrogates of the AD's author. As surrogates, they are expected to make sure that the AD is being implemented. Our study aims at uncovering how family members experience their legally assigned role as an advocate of an AD.
We conducted 25 episodic interviews with family surrogates of persons living with dementia and used thematic analysis to make sense of our interview data.
Family surrogates expressed scepticism toward ADs as instruments for planning end-of-life care. They did not necessarily follow the decisions expressed in the AD. We found cases in which family surrogates intentionally refrained from bringing the ADs to the attention of health care providers as well as cases in which the ADs conflicted with self-related interests of family surrogates.
Our findings lead us to critique the legal construction of family surrogates as advocates of the AD. Family members are directly and enduringly affected by the end-of-life care decisions that the AD sets out and are thus no neutral agents who have no stake in the matter. Expecting them to simply transmit decisions formulated in the AD means expecting them to render their own interests irrelevant-which, arguably, might be too much to ask.
德国法律规定，预先指示（AD）是具有法律约束力的文书，所有相关方都必须遵守。这也适用于被授权为 AD 作者的正式代理人的家庭成员。作为代理人，他们有责任确保 AD 得到执行。我们的研究旨在揭示家庭成员在作为 AD 倡导者的法律指定角色中是如何体验的。
我们对患有痴呆症的患者的 25 名家庭代理人进行了专题访谈，并使用主题分析来理解我们的访谈数据。
家庭代理人对 AD 作为规划临终关怀的工具表示怀疑。他们不一定遵循 AD 中表达的决定。我们发现有些情况下，家庭代理人故意不让医疗保健提供者注意到 AD，也有些情况下，AD 与家庭代理人的自身利益相冲突。
我们的研究结果导致我们对家庭代理人作为 AD 倡导者的法律结构提出批评。家庭成员直接且持久地受到 AD 规定的临终关怀决定的影响，因此他们不是没有利益相关的中立代理人。期望他们简单地传达 AD 中制定的决定意味着期望他们使自己的利益变得无关紧要——这可能要求过高。
