Effect of a disease-specific advance care planning intervention on end-of-life care

To compare patient preferences for end-of-life care with care received at the end of life.

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.

Two centers in Wisconsin with associated clinics and dialysis units.

Of the 313 individuals and their surrogates who completed entry data, 110 died.

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.

Preferences were documented and compared with care received at the end of life according to surrogate interviews or medical charts.

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.

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.