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

Abstract

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.

Figure

Study flow diagram.