Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others

Abstract

Background: 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.

Objectives: To better understand the challenges of decision-making from the surrogate's perspective.

Design: Semistructured telephone interview study of the experience of surrogate decision-making.

Participants: Fifty designated surrogates with previous decision-making experience.

Approach: 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.

Results: 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).

Conclusions: 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.