Empowering Older Adults to Discuss Advance Care Planning During Clinical Visits: The PREPARE Randomized Trial

Abstract

Background/objectives: A patient-directed, online program (PREPARE for Your Care [PREPARE]; prepareforyourcare.org) has been shown to increase advance care planning (ACP) documentation. However, the mechanisms underlying PREPARE are unknown. Our objectives were to compare the efficacy of PREPARE plus an easy-to-read advance directive (AD) vs an AD alone to increase active patient participation in ACP discussions during clinic visits and to examine effects of active patient participation on ACP documentation.

Design: Audio recordings of postintervention primary care visits from two randomized trials (2013-2016).

Setting: Seven primary care clinics at a veterans affair and safety-net hospital in San Francisco, CA.

Participants: English- and Spanish-speaking adults, aged 55 years and older, with two or more chronic/serious conditions.

Intervention: PREPARE plus an easy-to-read AD or an AD alone.

Measurements: The primary outcome was the number of active patient participation utterances about ACP (eg, asking questions, stating preferences) measured by the validated Active Patient Participation Coding Scheme. We examined differences in utterances by study arm using mixed effects negative binomial models and utterances as a mediator of PREPARE's effect on documentation using adjusted logistic regression. Models were adjusted for health literacy, prior care planning, and clinician.

Results: Among 393 participants, the mean (SD) age was 66 (8.1) years, 120 (30.5%) had limited health literacy, and 99 (25.2%) were Spanish speaking. PREPARE plus the AD resulted in 41% more active patient participation in ACP discussions compared with the AD alone (mean [SD] = 10.1 [16.8] vs 6.6 [13.4] utterances; incidence rate ratio = 1.41; 95% confidence interval = 1.00-1.98). For every additional utterance, participants had 15% higher odds of ACP documentation, and active patient participation accounted for 16% of PREPARE's effect on documentation.

Conclusions: The PREPARE program and easy-to-read AD empowered patients to actively participate in ACP discussions during clinical visits more than the AD alone. Increased activation was associated with increased ACP documentation. Therefore, PREPARE may mitigate barriers to ACP among English- and Spanish-speaking older adults.

Trial registration: ClinicalTrials.gov identifiers: "Improving Advance Care Planning by Preparing Diverse Seniors for Decision Making (PREPARE)" NCT01990235 and "Preparing Spanish-Speaking Older Adults for Advance Care Planning and Medical Decision Making (PREPARE)" NCT02072941. J Am Geriatr Soc 68:1210-1217, 2020.

Keywords: advance care planning; aging; patient participation; patient-physician communication.

Figure 1.

Audio-recording Consolidated Standards of Reporting Trials diagram. AD indicates advance directive; PREPARE, PREPARE for Your Care (prepareforyourcare.org). ^aRemoved patients include individuals deemed by staff to be too physically or mentally ill to participate.

Figure 2.

Active patient participation in advance care planning (ACP) discussions during clinical visits by study arm: PREPARE for Your Care (PREPARE; prepareforyourcare.org) plus the easy-to-read advance directive (AD) vs the AD alone. CI indicates confidence interval. ^aIncidence rate ratios (IRRs) adjusted for health literacy, prior advance care planning, and clustering by clinician. ^bReference group for IRR is AD only. ^cActive patient participation is a cumulative count of utterances that combines questions, expressions of concerns, and assertive responses. ^dUtterances are verbal units of participation included in an individual’s “turn” in a discussion and include a cumulative count of both active patient participation and other utterances about ACP, such as providing contextual information in response to question.

Figure 3.

Effect of patients’ active participation on advance care planning documentation by study arm: PREPARE for Your Care (PREPARE; prepareforyourcare.org) plus the easy-to-read advance directive (AD) vs the AD alone.