Abstract
OBJECTIVES: To compare patient preferences for end-of-life care with care received at the end of life. DESIGN: A randomized controlled trial was conducted with individuals with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care. SETTING: Two centers in Wisconsin with associated clinics and dialysis units. PARTICIPANTS: Of the 313 individuals and their surrogates who completed entry data, 110 died. INTERVENTION: During PC-ACP, the trained facilitator assessed individual and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of treatment preferences, and assisted the surrogates in understanding the patient's preferences and the surrogate's role. MEASUREMENTS: Preferences were documented and compared with care received at the end of life according to surrogate interviews or medical charts. RESULTS: Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) cases in which patients' wishes about cardiopulmonary resuscitation were not met than in the control group (6/48) but not significantly so. Significantly more experimental patients withdrew from dialysis than controls. CONCLUSION: Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision-makers is needed to detect significant differences.