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

Shepherd, Victoria, Hood, Kerenza, Sheehan, Mark, Griffith, Richard, Jordan, Amber and Wood, Fiona 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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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: 07 Oct 2021 15:10

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