Proxy decision-making about participation in palliative care research: A scoping review.

Abstract

Palliative care research must be inclusive of those with impairments in decision-making to provide a representative evidence base for care and treatment. When capacity to consent to research is impaired, proxies may be asked to support decision-making. However, little is known about how proxies navigate this role or what supports their involvement. To identify, describe, and synthesise empirical evidence on the use of proxies to support the involvement of adults with impaired mental capacity in palliative care research. A scoping review conducted and reported following the Joanna Briggs Institute guidance. Data were charted and are reported descriptively, organised by themes. Ovid Medline, Ovid EMBASE, EBSCO CINAHL, EBSCO Academic Search Ultimate, Scopus, Westlaw, HeinOnline, APA PsycINFO, and Social Sciences Citation Index for studies published between 2007 and 2025. Proxy decision-making was found to be context-dependent, shaped by consent models and varying across jurisdictions. Proxies' confidence and willingness to act were influenced by their understanding of consent requirements, perceived research value and power dynamics. Significant international variation exists in the legal and ethical frameworks that guide proxy involvement. Proxy decision-making in research is complex, involving legal, ethical, emotional, relational, and contextual factors. Demands on proxies are particularly pertinent in a palliative care context, where substituted decision making must be balanced alongside personal values and emotional burden. To promote inclusion, accessible, jurisdiction-specific guidance, training for proxies and researchers, and ongoing support mechanisms are essential. In a palliative care context, advance research planning might support proxy decision-making.