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Systematic review: Individuals' goals for surrogate decision-making


Kelly, Brenna; Rid, Annette; Wendler, David (2012). Systematic review: Individuals' goals for surrogate decision-making. Journal of the American Geriatrics Society, 60(5):884-895.

Abstract

Objectives
To determine to what extent current practice promotes the goals of individuals who did not designate a surrogate while competent with respect to decision-making during periods of decisional incapacity.
Design
Systematic literature search for studies published in English and listed in PubMed, Scopus, Embase, CINAHL, or PsycINFO. Studies were eligible if they provided quantitative or qualitative empirical data on how adults want treatment decisions to be made for them during periods of incapacity.
Setting
Primarily United States, with six other countries.
Participants
Fourteen qualitative articles, representing 11 distinct data sets, and 26 quantitative articles, representing 25 distinct data sets, providing data on the views of 22,828 individuals, met the inclusion criteria. Most of the respondents were elderly or seriously ill.
Measurements
Quantitative surveys and qualitative interview studies assessing individuals' goals.
Results
The majority wanted close family members to act as their surrogate. The most common reason for preferring family members was the belief that they know which treatments the patient would want. Individuals also wanted to reduce the burden on their families. There was significant variation in the extent to which respondents wanted their surrogates to have leeway when making treatment decisions.
Conclusion
Individuals have three primary goals with respect to making treatment decisions for them during periods of incapacity: involve their family, treat them consistently with their own treatment preferences, and reduce the burden on their family. Unfortunately, prior systematic reviews have found that family members often are not able to determine which treatment patients want, and family members frequently experience substantial distress when acting as surrogates. These findings suggest that current practice frequently fails to promote individuals' primary goals for treatment decision-making. Future research should evaluate ways to better promote individuals' goals. In the meantime, clinicians should be aware of these findings and should encourage patients to document their own goals, including their treatment preferences and their preferences regarding how they want decisions to be made for them during periods of decisional incapacity.

Abstract

Objectives
To determine to what extent current practice promotes the goals of individuals who did not designate a surrogate while competent with respect to decision-making during periods of decisional incapacity.
Design
Systematic literature search for studies published in English and listed in PubMed, Scopus, Embase, CINAHL, or PsycINFO. Studies were eligible if they provided quantitative or qualitative empirical data on how adults want treatment decisions to be made for them during periods of incapacity.
Setting
Primarily United States, with six other countries.
Participants
Fourteen qualitative articles, representing 11 distinct data sets, and 26 quantitative articles, representing 25 distinct data sets, providing data on the views of 22,828 individuals, met the inclusion criteria. Most of the respondents were elderly or seriously ill.
Measurements
Quantitative surveys and qualitative interview studies assessing individuals' goals.
Results
The majority wanted close family members to act as their surrogate. The most common reason for preferring family members was the belief that they know which treatments the patient would want. Individuals also wanted to reduce the burden on their families. There was significant variation in the extent to which respondents wanted their surrogates to have leeway when making treatment decisions.
Conclusion
Individuals have three primary goals with respect to making treatment decisions for them during periods of incapacity: involve their family, treat them consistently with their own treatment preferences, and reduce the burden on their family. Unfortunately, prior systematic reviews have found that family members often are not able to determine which treatment patients want, and family members frequently experience substantial distress when acting as surrogates. These findings suggest that current practice frequently fails to promote individuals' primary goals for treatment decision-making. Future research should evaluate ways to better promote individuals' goals. In the meantime, clinicians should be aware of these findings and should encourage patients to document their own goals, including their treatment preferences and their preferences regarding how they want decisions to be made for them during periods of decisional incapacity.

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35 citations in Web of Science®
39 citations in Scopus®
58 citations in Microsoft Academic
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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:2012
Deposited On:28 Jan 2013 11:34
Last Modified:17 Feb 2018 00:44
Publisher:Wiley-Blackwell
ISSN:0002-8614
OA Status:Closed
Publisher DOI:https://doi.org/10.1111/j.1532-5415.2012.03937.x

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