Systematic Review: Individuals' Goals for Surrogate Decision-Making

Authors


Address correspondence to David Wendler, Department of Bioethics, NIH Clinical Center, Building 10, Room 1C118, Bethesda, MD 20892. E-mail: dwendler@nih.gov

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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