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

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 For some surrogates, these other sources of knowledge superseded the importance of the physician's prognostication.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.