Do They Have a Choice? Surrogate Decision-Making After Severe Acute Brain Injury*

Abstract

Objectives: In the early phase of severe acute brain injury (SABI), surrogate decision-makers must make treatment decisions in the face of prognostic uncertainty. Evidence-based strategies to communicate uncertainty and support decision-making are lacking. Our objective was to better understand surrogate experiences and needs during the period of active decision-making in SABI, to inform interventions to support SABI patients and families and improve clinician-surrogate communication. Design: We interviewed surrogate decision-makers during patients’ acute hospitalization for SABI, as part of a larger (n = 222) prospective longitudinal cohort study of patients with SABI and their family members. Constructivist grounded theory informed data collection and analysis. Setting: One U.S. academic medical center. Patients: We iteratively collected and analyzed semistructured interviews with 22 surrogates for 19 patients. Interventions: None. Measurements and Main Results: Through several rounds of coding, interview notes, reflexive memos, and group discussion, we developed a thematic model describing the relationship between surrogate perspectives on decision-making and surrogate experiences of prognostic uncertainty. Patients ranged from 20 to 79 years of age (mean = 55 years) and had primary diagnoses of stroke (n = 13; 68%), traumatic brain injury (n = 5; 26%), and anoxic brain injury after cardiac arrest (n = 1; 5%). Patients were predominantly male (n = 12; 63%), whereas surrogates were predominantly female (n = 13; 68%). Two distinct perspectives on decision-making emerged: one group of surrogates felt a clear sense of agency around decision-making, whereas the other group reported a more passive role in decision-making, such that they did not even perceive there being a decision to make. Surrogates in both groups identified prognostic uncertainty as the central challenge in SABI, but they managed it differently. Only surrogates who felt they were actively deciding described time-limited trials as helpful. Conclusions: In this qualitative study, not all surrogate “decision-makers” viewed themselves as making decisions. Nearly all struggled with prognostic uncertainty. Our findings underline the need for longitudinal prognostic communication strategies in SABI targeted at surrogates’ current perspectives on decision-making.