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Surrogate Decision-Makers' Perspectives on Discussing Prognosis in the Face of Uncertainty

¹ Division of Pulmonary and Critical Care Medicine, University of California School of Medicine; ² Department of Clinical Pharmacy, University of California School of Pharmacy; ³ University of California School of Medicine; ⁴ Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital; and ⁵ Program in Medical Ethics, Department of Medicine, University of California, San Francisco, California

Correspondence and requests for reprints should be addressed to Douglas B. White, M.D., M.A.S., University of California, San Francisco, Division of Pulmonary and Critical Care Medicine, 521 Parnassus Ave., Suite C-126, 0903, San Francisco, CA 94143-0903. E-mail: dwhite{at}medicine.ucsf.edu

Rationale: Many physicians are reluctant to discuss a patient's prognosis when there is significant prognostic uncertainty.

Objectives: We sought to understand surrogate decision makers' views regarding whether physicians should discuss prognosis in the face of uncertainty.

Methods: We conducted semi-structured interviews with 179 surrogates for 142 incapacitated patients at high risk of death in four intensive care units at an academic medical center. The interviews explored surrogates' attitudes about whether physicians should discuss prognosis when they cannot be certain their prognostic estimates are correct. We used constant comparative methods to analyze the transcripts. Validation methods included triangulation by multidisciplinary analysis and member checking.

Measurements and Main Results: Eighty-seven percent (155/179) of surrogates wanted physicians to discuss an uncertain prognosis. We identified five main reasons for this, including surrogates' belief that prognostic uncertainty is unavoidable, that physicians are their only source for prognostic information, and that discussing prognostic uncertainty leaves room for realistic hope, increases surrogates' trust in the physician, and signals a need to prepare for possible bereavement. Twelve percent (22/179) of surrogates felt that discussions about an uncertain prognosis should be avoided. The main explanation was that it is not worth the potential emotional distress if the prognostications are incorrect. Surrogates suggested that physicians should explicitly discuss uncertainty when prognosticating.

Conclusions: The majority of surrogates of patients that are critically ill want physicians to disclose their prognostic estimates even if they cannot be certain they are correct. This stems from surrogates' belief that prognostic uncertainty is simultaneously unavoidable and acceptable.

Key Words: surrogate decision making • ethics • critical care • prognostication

AT A GLANCE COMMENTARY Scientific Knowledge on the Subject Prognostic uncertainty is inherent in caring for many critically ill patients. Previous research suggests that physicians are reluctant to prognosticate in the face of uncertainty, but little is known about surrogates' views on this topic. What This Study Adds to the Field Most surrogates see prognostic uncertainty as unavoidable and acceptable and desire a discussion of uncertain prognoses. These insights may contribute to the goal of improving physician–surrogate communication.