Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning

Abstract

IMPORTANCE: Advance care planning improves the receipt of medical care aligned with patients’ values; yet, it remains sub-optimal among diverse patient populations. To mitigate literacy, cultural, and language barriers to advance care planning, we created easy-to-read advance directives and a patient-directed, online advance care planning program called PREPARE in English and Spanish. OBJECTIVE: To compare the efficacy of PREPARE plus an easy-to-read advance directive to an advance directive alone to increase advance care planning documentation and patient-reported engagement. DESIGN: Comparative efficacy randomized trial from February 2014 to November 2017. SETTING: Four San Francisco, safety-net, primary-care clinics. PARTICIPANTS: English- or Spanish-speaking primary care patients, age ≥55 years, with ≥2 chronic or serious illnesses. INTERVENTIONS: Participants were randomized to PREPARE plus an easy-to-read advance directive (PREPARE) or the advance directive alone. There were no clinician/system-level interventions. Staff were blinded for all follow-up measurements. MAIN OUTCOMES AND MEASURES: The primary outcome was new advance care planning documentation (i.e., legal forms and/or documented discussions) at 15 months. Patient-reported outcomes included advance care planning engagement at baseline, 1 week, and 3, 6, and 12-months using validated surveys. We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy and baseline advance care planning, clustering by physician, and stratifying by language. RESULTS: The mean (SD) age of 986 participants was 63.3 years (± 6.4), 39.7% had limited health literacy, and 45% were Spanish-speaking. No participant characteristic differed between arms; retention was 85.9%. Compared to the advance directive alone, PREPARE resulted in higher advance care planning documentation (adjusted 43% vs. 32%; p<0.001) and higher self-reported increased advance care planning engagement scores (98.1% vs. 89.5%; p<0.001). Results remained significant among English and Spanish-speakers. CONCLUSIONS AND RELEVANCE: The patient-facing PREPARE program and an easy-to-read advance directive, without clinician/system-level interventions, increased advance care planning documentation and patient-reported engagement, with statistically higher gains for PREPARE. These tools may mitigate literacy and language barriers to advance care planning, allow patients to begin planning on their own, and could substantially improve the process for diverse, English- and Spanish-speaking populations.

Communication Tools to Support Advance Care Planning and Hospital Care During the COVID-19 Pandemic: A Design Process

“…Such communication can enhance connection and relationships with isolated patients, identify potential and addressable threats to their health and well-being, and prepare people for difficult decisions by eliciting and documenting information about what matters most in a crisis. 26 , 50 , 59 , 65 , 68 …”

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

“…Table 2 presents an overview of the content of the Web-based ACP programs, and Multimedia Appendix 2 presents the links to the Web-based programs. Target groups, for example, patients, were involved in the development of seven programs [31,[34][35][36][37][38][39][40][41][42][43][44][45]47,[49][50][51][52][53][54][55][56][57]. Four programs had a theory base [34][35][36][37][38][39][40][41][42][43][44][45]47,50,57], for example, Making Your Wishes Known was based on the Multi-Attribute Utility Theory, and PREPARE was based on behavior change theories.…”

“…Most programs were evaluated in one study [31][32][33][47][48][49]56,57], two studies evaluated MyDirectives [38,46], seven studies evaluated PREPARE [38,[50][51][52][53][54][55], and 12 studies evaluated Making Your Wishes Known in [34][35][36][37][38][39][40][41][42][43][44][45]. Multimedia Appendix 3 presents an overview of the characteristics of the studies.…”

Improved Serious Illness Communication May Help Mitigate Racial Disparities in Care Among Black Americans with COVID-19

“… Institute for Healthcare Improvement, Cambia Health Foundation, And Ariadne Labs 33 The Conversation Project A free guide and tool for helping people think about and document their values and what they would want if they became seriously ill with COVID-19. University of California San Francisco et al 34 , 35 PREPARE for your care Free online tool that helps patients identify and document medical decisions; features advance care planning scripts for outpatient health professionals, tips for patients about advance care planning and planning for a potential hospital stay, and access to advance directives. Partners Healthcare, adapted from Ariadne Labs 36 Partners Serious Illness Conversation Guide Freely available serious illness communication guide adapted from Ariadne Labs tools and implemented across primary and specialty care throughout the health system.…”