Spouse as health care proxy for dialysis patients: whose preferences matter?

PURPOSE: We examined the extent to which the substituted judgments made by spouses of patients with end-stage renal disease actually reflect patient preferences.

DESIGN AND METHODS: We used data from 291 couples to compare dialysis patients' preferences for continuing hemodialysis under a variety of hypothetical situations with both substituted judgment data from spouses and information about spouses' own preferences.

RESULTS: Substituted judgments were more highly related to spouses' preferences than to patients' preferences.

IMPLICATIONS: Findings raise questions about the extent to which the moral principle of patient autonomy should guide decision making at the end of life.