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

Abstract

Background and objectives: 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.

Design, setting, participants, & measurements: 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 percentage agreement and the κ-statistic.

Results: The mean (SD) age of the 172 enrolled family members was 55 (±17) years, 136 (79%) were women, and 43 (25%) were Black individuals. 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%) had spoken with the patient about their treatment preferences, 47 (27%) had spoken with the patient about stopping dialysis, and 56 (33%) had spoken with the patient about hospice. Agreement between patient and family member responses was highest for the question about whether the patient would want cardiopulmonary resuscitation (percentage agreement 83%, κ=0.31), and was 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 preferences but not about stopping dialysis or hospice. Although family members had a fair understanding of patients' cardiopulmonary resuscitation preferences, most lacked a detailed understanding of their perspectives on other aspects of end-of-life care.

Keywords: death; family; knowledge; maintenance; renal dialysis; terminal care.