Systematic Review Revisited, 2010-2020: The Effect on Surrogates of Making Treatment Decisions for Others

Abstract

Objectives: This study mapped research evidence spanning the last 10 years to identify the effect of being a surrogate decision maker for an incapacitated adult. Methods: A scoping review strategy was employed to allow for a focus on the breadth of the effect of surrogate decision making and to identify gaps in the existing research literature. Results: Surrogate decision making created emotional distress and burden for the majority of the SDMs. We found the negative effects on SDMs were linked to variety of stressors: fear of not knowing what the patient would want or being unable to fulfill the patient's actual or perceived wishes, feeling unprepared to assume the role of a SDM, and watching a loved one's health deteriorate over time. Discussion: Additional research is needed to elucidate the emotional burden of culturally diverse SDMs to determine their differences when compared to various groups.

Keywords: burden and decision making; surrogate; treatment.