The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

Abstract Objective Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed. Methods This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008). Results Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact. Conclusion Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances. Practice implications This review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.