Surviving Surrogate Decision-Making: What Helps and Hampers the Experience of Making Medical Decisions for Others

Abstract

A majority of end-of-life medical decisions are made by surrogate decision-makers who have varying degrees of preparation and comfort with their role. Having a seriously ill family member is stressful for surrogates. Moreover, most clinicians have had little training in working effectively with surrogates. To better understand the challenges of decision-making from the surrogate’s perspective. Semistructured telephone interview study of the experience of surrogate decision-making. Fifty designated surrogates with previous decision-making experience. We asked surrogates to describe and reflect on their experience of making medical decisions for others. After coding transcripts, we conducted a content analysis to identify and categorize factors that made decision-making more or less difficult for surrogates. Surrogates identified four types of factors: (1) surrogate characteristics and life circumstances (such as coping strategies and competing responsibilities), (2) surrogates’ social networks (such as intrafamily discord about the “right” decision), (3) surrogate–patient relationships and communication (such as difficulties with honoring known preferences), and (4) surrogate–clinician communication and relationship (such as interacting with a single physician whom the surrogate recognizes as the clinical spokesperson vs. many clinicians). These data provide insights into the challenges that surrogates encounter when making decisions for loved ones and indicate areas where clinicians could intervene to facilitate the process of surrogate decision-making. Clinicians may want to include surrogates in advance care planning prior to decision-making, identify and address surrogate stressors during decision-making, and designate one person to communicate information about the patient’s condition, prognosis, and treatment options.