Advance Care Planning and End-of-Life Decision Making in Dialysis: A Randomized Controlled Trial Targeting Patients and Their Surrogates

Background: Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. Study Design: A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. Setting & Participants: 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Intervention: Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. Outcomes & Measurements: Primary outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. Secondary outcomes: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. Results: Primary outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (beta = 0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (beta = -0.01; 95% CI, -0.12 to 0.10). Secondary outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (beta = -1.13; 95% CI, 22.23 to 20.03), depression (beta = -2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (beta = -5.75; 95% CI, -10.9 to -0.64) than controls. Limitations: Study was conducted in a single US region. Conclusions: SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes. (C) 2015 by the National Kidney Foundation, Inc.