Ethical understandings of proxy decision making for research involving adults lacking capacity: a systematic review (framework synthesis) of empirical research

Shepherd, Victoria ORCID: https://orcid.org/0000-0002-7687-0817, Hood, Kerenza ORCID: https://orcid.org/0000-0002-5268-8631, Sheehan, Mark, Griffith, Richard, Jordan, Amber ORCID: https://orcid.org/0000-0001-7746-2463 and Wood, Fiona ORCID: https://orcid.org/0000-0001-7397-4074 2018. Ethical understandings of proxy decision making for research involving adults lacking capacity: a systematic review (framework synthesis) of empirical research. American Journal of Bioethics 9 (4) , pp. 267-286. 10.1080/23294515.2018.1513097

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Abstract

Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy decision-making, proxies’ authority as decision-makers, decision accuracy, and other relevant factors. However, a comprehensive evidence-based account of proxy decision-making is lacking. This systematic review provides a synthesis of the empirical data reporting the ethical issues surrounding decisions made by research proxies, and the development of a conceptual framework of proxy decision-making for research. Methods: A systematic review was conducted according to PRISMA guidelines. Databases including MEDLINE, EMBASE, and CINAHL were searched using a combination of search terms, and empirical data from eligible studies were retrieved. The review followed the framework synthesis approach to refine and develop a conceptual framework. Results: Thirty-four studies were included in the review. Two dimensions of proxy decision-making emerged. The ethical framing criteria of decision-making used by proxies: use of a substituted judgement, use of a best interests approach, combination of substituted judgement and best interests, and ‘something else’, and the active elements of proxy decision-making: ‘knowing the person’, patient-proxy relationship, accuracy of the decision, and balancing risks, benefits and burdens, and attitudes towards proxy decision-making. Interactions between the framing criteria and the elements of decision-making are complex and contextually-situated. Conclusions: The findings from this systematic review challenge the accepted reductionist account of proxy decision-making. Decision-making by research proxies is highly contextualized and multifactorial in nature. The choice of proxy and the relational features of decision-making play a fundamental role: both in providing the proxy’s authority as decision-maker, and guiding the decision-making process. The conceptual framework describes the relationship between the framing criteria used by the proxy, and the active elements of decision-making. Further work to develop, and empirically test the proposed framework is needed.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Publisher:	Taylor & Francis
ISSN:	1526-5161
Date of First Compliant Deposit:	9 July 2018
Date of Acceptance:	1 July 2018
Last Modified:	06 Nov 2023 22:53
URI:	https://orca.cardiff.ac.uk/id/eprint/113052

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