Surrogate decision-makers from historically marginalized populations have lower levels of preparedness for care planning.

BACKGROUND: Surrogate preparedness for medical decision-making is an important part of care planning. This study examined preparedness and engagement among historically marginalized surrogates. METHODS: Surrogates were included if they were named medical decision-makers by patients ≥55 years at a San Francisco safety-net and Veterans Affairs hospital. We assessed preparedness for medical decision-making by asking if surrogates had been formally asked to be the medical decision-maker, if patients had discussed medical wishes with surrogates, and if the surrogate role and these medical wishes had been documented. We assessed surrogate confidence and readiness using a modified Surrogate ACP Engagement Survey. We used Wilcoxon rank-sum tests to measure the association of engagement scores with surrogate characteristics. RESULTS: Of 422 surrogates, their mean age was 53 years (SD ±14.5), 73% were from minoritized groups, 38% were Spanish-speaking, and 15% had limited health literacy. For preparedness outcomes, 13% of surrogates were not formally asked to play this role, 46% reported the patient had not discussed end-of-life medical wishes, and 51% reported there had been no formal documentation of the surrogate role. Surrogates reported higher confidence 4.43/5 (SD ± 0.64) than readiness 3.70 (1.22) for decision-making (p < 0.001). Confidence and readiness scores were lower among historically marginalized participants. CONCLUSION: More resources are needed to prepare surrogate decision-makers from historically marginalized communities for discussing patient's goals of care and treatment preferences.

Engaging Diverse Older Adults With Cognitive Impairment and Caregivers in Advance Care Planning: A Pilot Study of the Interactive PREPARE Website.

INTRODUCTION: Engaging patients with cognitive impairment in advance care planning (ACP), including completing advance directives and naming health care proxies, before they lose decision-making capacity is important. METHODS: We determined the feasibility of the PREPAREforYourCare.org ACP program among 20 diverse older adults with mild-to-moderate cognitive impairment and their caregivers in a 1-week, pre-post pilot. We examined ease-of-use, satisfaction, and feasibility using validated scales, and change in ACP Engagement scores, including knowledge, contemplation, self-efficacy, and readiness subscales (5-point scales), from baseline to 1-week. RESULTS: Participants were on average 70 years old (SD=9.0), 45% Spanish-speaking, 60% had limited health literacy, and 15% felt comfortable using the internet. Patients and caregivers rated PREPARE a mean of 8.6 (SD=1.6) and 9.4 (SD=1.1) on the 10-point ease-of-use scale, 4.7 (SD=0.4) and 4.7 (SD=0.3) on the 5-point satisfaction scale, and 4.9 (SD=0.4) and 4.8 (SD=0.6) on the 5-point feasibility scale, respectively. ACP engagement scores increased for 16 of 20 (80%) patients (P=0.03) and 16 of 20 (80%) caregivers (P=0.18). Caregivers experienced increased knowledge (3.8 to 4.7, P=0.002) and self-efficacy (3.6 to 4.5, P=0.034) for ACP. DISCUSSION: The PREPARE website was feasible and may facilitate ACP engagement among diverse older adults with cognitive impairment and their caregivers.

English and Spanish-speaking vulnerable older adults report many barriers to advance care planning.

BACKGROUND/OBJECTIVES: Advance care planning (ACP) rates are low in diverse, vulnerable older adults, yet little is known about the unique barriers they face and how these barriers impact ACP documentation rates. DESIGN: Validated questionnaires listing patient, family/friend, and clinician/system-level ACP barriers and an open-ended question on ACP barriers. SETTING: Two San Francisco public/Department of Veterans Affairs hospitals. PARTICIPANTS: One thousand two hundred and forty-one English and Spanish-speaking patients, aged 55 and older, with two or more chronic conditions. MEASUREMENTS: The open-ended question on ACP barriers was analyzed using content analysis. We conducted chart review for prior ACP documentation. We used chi-square/Wilcoxon rank-sum tests and logistic regression to assess associations between ACP barriers and demographic characteristics/ACP documentation. RESULTS: Participant mean age was 65 ± 7.4 years; they were 74% from racial/ethnic minority groups, 36% Spanish-speaking, and 36% with limited health literacy. A total of 26 barriers were identified (15 patient, 4 family/friend, 7 clinician/system-level), and 91% reported at least one ACP barrier (mean: 5.6 ± 4.0). The most common barriers were: (patient-level) discomfort thinking about ACP (60%), wanting to leave health decisions to "God" (44%); (family/friend-level) not wanting to burden friends/family (33%), assuming friends/family already knew their preferences (31%); (clinician/system-level) assuming doctors already knew their preferences (41%), and mistrust (37%). Compared with those with no barriers, participants with at least one reported barrier were more likely to be from a racial/ethnic minority group (76% vs 53%), Spanish-speaking (39% vs 6%), with fair-to-poor health (48% vs 34%), and limited health literacy (39% vs 9%) (p < 0.001 for all). Participants who reported barriers were less likely to have ACP documentation (adjusted odds ratio = 0.64, 95% confidence interval [0.42, 0.98]). CONCLUSION: English- and Spanish-speaking older adults reported 26 unique barriers to ACP, with higher barriers among vulnerable populations, and barriers were associated with lower ACP documentation. Barriers must be considered when developing customized ACP interventions for diverse older adults.