Irrelevant Interests? A Qualitative Study Into How German Family Surrogates of Persons Living With Dementia Fulfill Their Legal Role as Advocates of an Advance Directive

Abstract

Abstract Background and Objectives 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. Research Design and Methods We conducted 25 episodic interviews with family surrogates of persons living with dementia and used thematic analysis to make sense of our interview data. Results 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. Discussion and Implications 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.