Randomized controlled trial of SPIRIT: an effective approach to preparing African-American dialysis patients and families for end of life

Abstract

This randomized controlled trial tested an intervention, Sharing Patients' Illness Representations to Increase Trust (SPIRIT), designed to enhance communication regarding end-of-life care between African Americans with end-stage renal disease (ESRD) and their chosen surrogate decision makers (N = 58 dyads). We used surveys and semi-structured interviews to determine the feasibility, acceptability, and preliminary effects of SPIRIT on patient and surrogate outcomes at 1 week and 3 months post-intervention. We also evaluated patients' deaths and surrogates' end-of-life decision making to assess surrogates' perceptions of benefits and limitations of the SPIRIT while facing end-of-life decisions. We found that SPIRIT promoted communication between patients and their surrogates and was effective and well received by the participants.

Figure 1

Study Participants’ Progress in the Study

Figure 2

Number of Dyads Who Improved Dyad Congruence and Surrogate Decision Making Confidence by Group Note. “Improved” included the combination of congruent dyad + confident surrogate (score ≥ 3); “Not Improved” included three combinations, incongruent dyad + unconfident surrogate (score ≤ 2), incongruent dyad + confident surrogate, and congruent dyad + unconfident surrogate.

Figure 3

Participants’ Experiences with SPIRIT Described During Acceptability Interviews Note. Each description was counted only once even if the individual mentioned it more than once.