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“It’s not just what the doctor tells me:” Factors that influence surrogate decision-makers’ perceptions of prognosis*

Boyd, Elizabeth A. PhD; Lo, Bernard MD; Evans, Leah R. Med; Malvar, Grace BA; Apatira, Latifat BA; Luce, John M. MD; White, Douglas B. MD, MAS

doi: 10.1097/CCM.0b013e3181d8a217
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Objective: Physicians and surrogate decision-makers for seriously ill patients often have different views of patients’ prognoses. We sought to understand what sources of knowledge surrogates rely on when estimating a patient’s prognosis.

Design: Prospective, mixed-methods study using face-to-face, semistructured interviews with surrogate decision-makers.

Setting: Four intensive care units at the University of California, San Francisco Medical Center in 2006 to 2007.

Participants: Participants were 179 surrogate decision-makers for 142 incapacitated, critically ill patients at high risk for death.

Main Results: Less than 2% (3 of 179) of surrogates reported that their beliefs about the patients’ prognoses hinged exclusively on prognostic information provided to them by physicians. The majority cited other factors in addition to physicians’ predictions that also contributed to their beliefs about the patients’ prognoses, including perceptions of the patient’s individual strength of character and will to live; the patient’s unique history of illness and survival; the surrogate’s own observations of the patient’s physical appearance; the surrogate’s belief that their presence at the bedside may improve the prognosis; and the surrogate’s optimism, intuition, and faith. For some surrogates, these other sources of knowledge superseded the importance of the physician’s prognostication. However, most surrogates endeavored to balance their own knowledge of the patient with physicians’ biomedical knowledge.

Conclusions: Surrogates use diverse types of knowledge when estimating their loved ones’ prognoses, including individualized attributes of the patient, such as their strength of character and life history, of which physicians may be unaware. Attention to these considerations may help clinicians identify and overcome disagreements about prognosis.

From Department of Pharmacy Practice and Science (EAB), University of Arizona, Tucson, Arizona; Program in Medical Ethics (BL), Department of Medicine, Division of Pulmonary and Critical Care Medicine (LRE), Division of Pulmonary and Critical Care Medicine (GM), School of Medicine (LA), University of California, San Francisco, San Francisco, California; Division of Pulmonary and Critical Care Medicine (JML), San Francisco General Hospital, San Francisco, California; Program on Ethics and Critical Care Medicine (DBW), Department of Critical Care Medicine; University of Pittsburgh Medical Center, Pittsburgh, PA.

The work was performed at the University of California, San Francisco.

The study was reviewed and approved by the Committee on Human Research at the University of California, San Francisco.

This project was supported by a U.S. National Institutes of Health grant KL2 RR024130 from the National Center for Research Resources (NCRR), a component of the NIH Roadmap for Medical Research (DBW).

The authors have not disclosed any potential conflicts of interest.

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© 2010 by the Society of Critical Care Medicine and Lippincott Williams & Wilkins