Family Members' Understanding of the End-of-Life Wishes of People Undergoing Maintenance Dialysis.

Background: People receiving maintenance dialysis must often rely on family members and other close persons to make critical treatment decisions toward the end of life. Contemporary data on family members' understanding of the end-of-life wishes of members of this population are lacking. Methods: Among 172 family members of people undergoing maintenance dialysis, we ascertained their level of involvement in the patient's care and prior discussions about care preferences. We also compared patient and family member responses to questions about end-of-life care using percent agreement and the kappa statistic. Results: The mean (SD) age of the 172 enrolled family members was 55 (±17.0) years, 136 (79%) were women, and 43 (25%) were Black. Sixty-seven (39%) family members were spouses or partners of enrolled patients. A total of 137 (80%) family members had spoken with the patient about whom they would want to make medical decisions,108 (63%) about their treatment preferences, 47 (27%) about stopping dialysis and 56 (33%) about hospice. Agreement between patient and family member responses was highest (though still fair) for the question about whether or not the patient would want cardiopulmonary resuscitation (CPR) (percent agreement 83%, kappa 0.31) and substantially lower for questions about a range of other aspects of end-of-life care including preference for mechanical ventilation (62%, 0.21), values around life prolongation versus comfort (45%, 0.13), preferred place of death (58%, 0.07), preferred decisional role (54%, 0.15) and prognostic expectations (38%, 0.15). Conclusions: Most surveyed family members reported they had spoken with the patient about their end-of-life wishes but not about stopping dialysis or hospice. While family members had a fair understanding of patients' CPR preference, most lacked a detailed understanding of patients' perspectives on other aspects of end-of-life care.