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ToolsBarry, Caroline, Craske, Miriam, Hawkes, Matthew, Peryer, Guy, Bunning, Karen, Heywood, Rob, Patel, Martyn and Shepherd, Victoria (2026) Proxy decision-making about participation in palliative care research: A scoping review. Palliative Medicine. pp. 1-17. ISSN 0269-2163
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Abstract
Background 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. Aim 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. Design A 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. Results 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. Conclusion 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.
| Item Type: | Article |
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| Additional Information: | This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
| Uncontrolled Keywords: | cognitive dysfunction,informed consent,jurisprudence,legislation,palliative care,proxy,third-party consent,anesthesiology and pain medicine ,/dk/atira/pure/subjectarea/asjc/2700/2703 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School Faculty of Science Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Social Sciences > School of Law |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Public Health Faculty of Medicine and Health Sciences > Research Groups > Rehabilitation Faculty of Medicine and Health Sciences > Research Centres > Mental Health and Social Care (fka Lifespan Health) Faculty of Medicine and Health Sciences > Research Groups > Medical Humanities Research Network |
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| Depositing User: | LivePure Connector |
| Date Deposited: | 13 May 2026 11:34 |
| Last Modified: | 14 May 2026 15:16 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/102992 |
| DOI: | 10.1177/02692163261431100 |
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