• Adeline L Goss, VoumardRachel RutzRRDepartment of Medicine, Palliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.Clinical Ethics Unit, Institute of Humanities in Medicine, Lausanne University Hospital and , Ruth A Engelberg, CurtisJ RandallJRDivision of Pulmonary, Critical Care and Sleep Medicine, Department of Medicine, University of Washington, Harborview Medical Center, Seattle, WA.Cambia Palliative Care Center of Excellence at University of Washington, Harborview Medical , and Claire J Creutzfeldt.
• Division of Neurology, Department of Internal Medicine, Highland Hospital, Oakland, CA.
• Crit. Care Med. 2023 Jul 1; 51 (7): 924935924-935.

ObjectivesIn 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.DesignWe 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.SettingOne U.S. academic medical center.PatientsWe iteratively collected and analyzed semistructured interviews with 22 surrogates for 19 patients.InterventionsNone.Measurements And Main ResultsThrough 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.ConclusionsIn 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.Copyright © 2023 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.

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