Medical Decision-Making for Adults Who Lack Decision-Making Capacity and a Surrogate: State of the Science

Abstract

Background:

Adults who lack decision-making capacity and a surrogate (“unbefriended” adults) are a vulnerable, voiceless population in health care. But little is known about this population, including how medical decisions are made for these individuals.

Objective:

This integrative review was to examine what is known about unbefriended adults and identify gaps in the literature.

Methods:

Six electronic databases were searched using 4 keywords: “unbefriended,” “unrepresented patients,” “adult orphans,” and “incapacitated patients without surrogates.” After screening, the final sample included 10 data-based articles for synthesis.

Results:

Main findings include the following: (1) various terms were used to refer to adults who lack decision-making capacity and a surrogate; (2) the number of unbefriended adults was sizable and likely to grow; (3) approaches to medical decision-making for this population in health-care settings varied; and (4) professional guidelines and laws to address the issues related to this population were inconsistent. There have been no studies regarding the quality of medical decision-making and its outcomes for this population or societal impact.

Conclusion:

Extremely limited empirical data exist on unbefriended adults to develop strategies to improve how medical decisions are made for this population. There is an urgent need for research to examine the quality of medical decision-making and its outcomes for this vulnerable population.