“Taking over somebody's life”: Experiences of surrogate decision-makers in the surgical intensive care unit

Abstract

Impaired capacity of patients necessitates the use of surrogates to make decisions on behalf of patients. Little is known about surrogate decision-making in the surgical intensive care unit, where the decline to critical illness is often unexpected. We sought to explore surrogate experiences with decision-making in the surgical intensive care unit. This qualitative study was performed at 2 surgical intensive care units at a single, tertiary, academic hospital Surrogate decision-makers who had made a major medical decision for a patient in the surgical intensive care unit were identified and enrolled prospectively. Semistructured telephone interviews following an interview guide were conducted within 90days after hospitalization until thematic saturation. Recordings were transcribed, coded inductively, and analyzed utilizing an interpretive phenomenologic approach. A major theme that emerged from interviews (N=19) centered on how participants perceived the surrogate role, which is best characterized by 2 archetypes: (1) Preferences Advocates, who focused on patients' values; and (2) Clinical Facilitators, who focused on patients' medical conditions. The primary archetype of each surrogate influenced how they defined their role and approached decisions. Preferences Advocates framed decisions in the context of patients' values, whereas Clinical Facilitators emphasized the importance of clinical information. The experiences of surrogates in the surgical intensive care unit are related to their understanding of what it means to be a surrogate and how they fulfill this role. Future work is needed to identify and manage the informational needs of surrogate decision-makers.