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.

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 For some surrogates, these other sources of knowledge superseded the importance of the physician’s prognostication.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

Background Although many physicians worry that openly discussing a poor prognosis will cause patients and families to lose hope, surrogate “decision makers’ perspectives on this topic are largely unknown. Objective To determine surrogate decision makers’ attitudes toward balancing hope and telling the truth when discussing prognosis. Design Prospective, mixed-methods cohort study. Setting 4 intensive care units at the University of California, San Francisco, Medical Center, San Francisco, California. Participants 179 surrogate decision makers for incapacitated patients at high risk for death. Measurements One-on-one, semistructured interviews with surrogates were conducted on the patients’ 5th day of receiving mechanical ventilation. Constant comparative methods were used to inductively develop a framework to describe participants’ responses. Validation methods included multidisciplinary analysis and member checking. Results Overall, 93% (166 of 179) of surrogates felt that avoiding discussions about prognosis is an unacceptable way to maintain hope. The main explanatory theme was that timely discussion of prognosis is essential to allow family members to prepare emotionally and logistically for the possibility of a patient’s death. Other themes that emerged included surrogates’ belief that an accurate understanding of a patient’s prognosis allows them to better support the patient and each other, a moral aversion to the idea of false hope, the perception that physicians have an obligation to discuss prognosis, and the notion that some surrogates look to physicians primarily for truth and seek hope elsewhere. A few surrogates (6 of 179) felt that physicians should withhold prognostic information because of a belief that discussing death could be emotionally damaging to the family or could negatively affect the patient’s health. Limitation The authors did not longitudinally assess whether early disclosure about prognosis predicts fewer adverse bereavement outcomes. Conclusion Most surrogates of critically ill patients do not view withholding prognostic information as an acceptable way to maintain hope, largely because timely discussions about prognosis help families begin to prepare emotionally, existentially, and practically for the possibility that a patient will die.

Background Little is known about what role physicians take in the decision-making process about life support in intensive care units. Objective To determine how responsibility is balanced between physicians and surrogates for life support decisions and to empirically develop a framework to describe different models of physician involvement. Design Multi-centered study of audio-taped clinician–family conferences with a derivation and validation cohort. Setting Intensive care units of four hospitals in Seattle, Washington, in 2000 to 2002 and two hospitals in San Francisco, California, in 2006 to 2008. Participants Four hundred fourteen clinicians and 495 surrogates who were involved in 162 life support decisions. Results In the derivation cohort (n = 63 decisions), no clinician inquired about surrogates’ preferred role in decision-making. Physicians took one of four distinct roles: 1) informative role (7 of 63) in which the physician provided information about the patient’s medical condition, prognosis, and treatment options but did not elicit information about the patient’s values, engage in deliberations, or provide a recommendation about whether to continue life support; 2) facilitative role (23 of 63), in which the physician refrained from providing a recommendation but actively guided the surrogate through a process of clarifying the patients’ values and applying those values to the decision; 3) collaborative role (32 of 63), in which the physician shared in deliberations with the family and provided a recommendation; and 4) directive role (1 of 63), in which the physician assumed all responsibility for, and informed the family of, the decision. In 10 out of 20 conferences in which surrogates requested a recommendation, the physician refused to provide one. The validation cohort revealed a similar frequency of use of the four roles, and frequent refusal by physicians to provide treatment recommendations. Conclusions There is considerable variability in the roles physicians take in decision-making about life support with surrogates but little negotiation of desired roles. We present an empirically derived framework that provides a more comprehensive view of physicians’ possible roles.