ArticlePalliative medicine2026
Proxy decision-making about participation in palliative care research: A scoping review.
Article in Palliative medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
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Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPalliative 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.
aimTo 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.
designA scoping review conducted and reported following the Joanna Briggs Institute guidance. Data were charted and are reported descriptively, organised by themes. DATA SOURCES: 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.
resultsProxy 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.
conclusionProxy 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.