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.
Fiche du document
1 avril 2024
- doi: 10.1093/geront/gnad119
- issn: 0016-9013
Ce document est lié à :
info:eu-repo/semantics/altIdentifier/doi/10.1093/geront/gnad119
Ce document est lié à :
info:eu-repo/semantics/altIdentifier/pmid/37650918
Ce document est lié à :
info:eu-repo/semantics/altIdentifier/eissn/1758-5341
Ce document est lié à :
info:eu-repo/semantics/altIdentifier/urn/urn:nbn:ch:serval-BIB_DC5589B360113
info:eu-repo/semantics/embargoedAccess , Restricted: cannot be viewed until 2025-04-01 , Copying allowed only for non-profit organizations , https://serval.unil.ch/disclaimer
Sujets proches
Family Family structure Families--Social aspects Families--Social conditions Family life Structure, Family Family relationships Relationships, Family Biography--Ancestry Relations with family Biography--Descendants Biography--Family AncestryCiter ce document
J. Fischer et al., « 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. », Serveur académique Lausannois, ID : 10.1093/geront/gnad119
Métriques
Partage / Export
Résumé
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.
