Hope, truth, and preparing for death: perspectives of surrogate decision makers.

Discussing prognosis is a challenging task for physicians, both because the news of a poor prognosis is emotionally difficult (1) and also because there is considerable prognostic uncertainty for many illnesses and for most individual, seriously ill patients (2). Physicians often rely on clinical experience and judgment in formulating prognostic estimates (3). Previous research suggests that 90% of physicians are reluctant to provide specific prognostic information, 75% shade their prognostic estimates to be more optimistic than they believe are true, and 44% wait to be asked before discussing prognosis (1, 4). Research on audiotaped clinician–family conferences in intensive care units confirms that physicians frequently omit important prognostic information from discussions or use vague language when discussing prognosis (3, 5). Christakis (6) found that 1 reason for physicians’ reluctance is a concern that their words may extinguish patients’ and families’ sense of hope; these physicians perceive the act of nondisclosure to be a humane attempt to minimize suffering. When patients are suddenly incapacitated by severe illness, physicians turn to surrogate decision makers for guidance about setting goals of care and making decisions to limit life-sustaining treatment (7, 8). Families report that the surrogate decision-making process is often problematic and poses substantial emotional burdens (9–12). Conflict about these decisions is common within families and between the family and the health care team (13, 14). Although several empirical studies in oncology have addressed the attitudes of patients on the topic of hope and telling the truth about prognosis (4, 15–17), no studies have focused on the perspective of family members who act as surrogate decision makers. Specifically, it is unknown whether surrogates share physicians’ perceptions that discussing a poor prognosis may extinguish hope. In addition, little is known about the ways that surrogates use prognostic information or why possessing such information might be important to them. These gaps in knowledge hinder the development of empirically derived interventions to improve surrogate decision making and the support of family members of patients who will probably die. We conducted this study to determine the attitudes of a diverse group of surrogate decision makers toward balancing hope and telling the truth in the care of seriously ill patients at high risk for death. Context Physicians caring for critically ill patients are often reluctant to discuss poor prognoses with family members. Contribution Family members interviewed in this study believed that physicians should not withhold information about poor prognosis as a way of preserving their hope. Caution The study did not assess psychological outcomes of family members who did and did not receive the prognostic information they said they wanted. Implication Physicians should not withhold information about poor prognosis solely to preserve family members’ hope. —The Editors