Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates

Abstract

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.

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.

Primary outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β=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 (β=-0.01; 95% CI, -0.12 to 0.10).

Secondary outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β=-1.13; 95% CI, -2.23 to -0.03), depression (β=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β=-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.

Keywords: Advance care planning (ACP); advanced kidney disease; bereavement; death; dyad congruence; emotional distress; end-of-life decision making; end-stage renal disease (ESRD); hemodialysis; life-sustaining treatment; medical decision; patient education intervention; patient-surrogate dyad; randomized controlled trial (RCT); surrogate decision maker; treatment options.

Figure 1

Flow through the Sharing Patient’s Illness Representations to Increase Trust (SPIRIT) trial of an advance care planning intervention for long-term dialysis patients (pts) and their chosen surrogates. (A) Participant flow. ^aFive dyads did not receive the second SPIRIT session (a brief follow-up [f/u] discussion): 3 dyads repeatedly canceled, 1 patient died before the scheduled session, and 1 home visit could not be made due to safety concerns for the interventionist. ^bSee Fig 1B for surrogate participant flow after patient’s death. (B) Surrogate participant flow after patient’s death.