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.

Quality and Satisfaction With Advance Care Planning Conversations Among English- and Spanish-Speaking Older Adults.

Background: Little is known about the patient-reported quality of and satisfaction with advance care planning (ACP) conversations with surrogates and clinicians among English- and Spanish-speaking older adults, or the potential disparities associated with ACP communication satisfaction. Objectives: To determine patients' perceived quality of and satisfaction with ACP surrogate/clinician conversations and associated patient characteristics. Design: Cross-sectional baseline data were used from two ACP trials, 2013-2017. Outcomes included self-reported ACP conversation quality ("general" vs. "detailed") and communication satisfaction (5-point Likert scale). Associations were determined by chi-squared and t-tests. Setting/Subjects: Subjects were primary care patients ≥55 years with chronic/serious illness in the United States. Results: Of 1398 patients, mean age was 65.6 years (±7.7), 46% women, 32% Spanish speaking, 34% had limited health literacy, and 589 (42%) reported conversations with surrogates and 216 (15%) with clinicians. Of these, less than half rated the conversations as detailed high quality (clinician: 43%; surrogate: 37%). Five-point communication satisfaction scores were higher with detailed versus general conversations (e.g., surrogates: 4.4 vs. 4.1, p = 0.001; clinicians: 4.4 vs. 4.2, p = 0.18) and more often reported by men versus women [(4.4 (0.8) vs. 4.0 (1.0), p = 0.003]; those with adequate versus limited health literacy [4.4 (0.8) vs. 4.0 (0.9), p = 0.002]; and English versus Spanish speakers [4.5 (0.7) vs. 3.5 (0.9), p < 0.001]. Conclusions: Among English- and Spanish-speaking older adults, ACP conversations were infrequent and most were general in quality. Higher quality detailed conversations resulted in greater communication satisfaction. Interventions are needed to improve conversation quality, particularly for Spanish-speaking patients and those with limited health literacy. Trial Registrations: 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.

Surrogate Decision Makers Need Better Preparation for Their Role: Advice from Experienced Surrogates.

Background: Surrogate decision makers are required to make difficult end-of-life decisions with little preparation. Little is known about what surrogates may need to adequately prepare for their role, and few resources exist to prepare them. Objective: To explore experiences and advice from surrogates about how best to prepare for the surrogate role. Design: Semistructured focus groups. Setting/Participants: Sixty-nine participants were recruited through convenience sampling in San Francisco area hospitals, cancer support groups, and community centers for 13 focus groups. Surrogates were included if they were 18 years of age or older and reported having made medical decisions for others. Measurements: Qualitative thematic content analysis. Results: Forty participants reported making surrogate decisions for others: 6 were Spanish speaking, 22 were women, 16 were Black American, 11 Asian/Pacific Islander, 6 Latinx, and 7 White; 9 had limited health literacy. The majority (29, 73%) emphasized the importance of advance care planning (ACP) and expressed the desire for additional guidance. Five themes and advice were identified: (1) lack of, but needing, surrogates' own preparation and guidance (2) initiate ACP conversations, (3) learn patient's values and preferences, (4) communicate with clinicians and advocate for patients, and (5) make informed surrogate decisions. Conclusion: Experienced surrogate decision makers emphasized the importance of ACP and advised that surrogates need their own preparation to initiate ACP conversations, learn patients' values, advocate for patients, and make informed surrogate decisions. Future interventions should address these preparation topics to ease surrogate burden and decrease disparities in surrogate decision making.

Empowering patients with the PREPARE advance care planning program results in reciprocal clinician communication.

BACKGROUND: The patient-directed PREPAREforYourCare.org program empowers patients to participate in advance care planning (ACP) discussions with clinicians. Our goal was to determine whether PREPARE could reciprocally increase clinician ACP communication. METHODS: In a secondary analysis of two trials evaluating the efficacy of PREPARE plus an easy-to-read advance directive (AD) versus an AD alone, patients were included if they were ≥55 years old, English- or Spanish-speaking, and had ≥2 chronic conditions. We audio-recorded postintervention primary care visits and used the validated clinician-patient participation coding scheme to calculate the number of clinician ACP utterances concerning information-giving, recommendations, or supportive talk. We examined differences by study arm using mixed effects negative binomial models, stratifying by language. To assess possible mediation, we adjusted for active patient participation (e.g., asking questions or stating preferences). RESULTS: Three hundred ninety-three visits were audio-recorded (177 in PREPARE arm and 216 in AD-only arm). Recordings included 179 clinicians (mean 2.2 [SD 1.9] patients each). Patients' mean age was 66 ± 8 years, 31% had limited health literacy, and 25% were Spanish-speaking. Exactly 67% of recordings included information-giving, 85% recommendations, and 62% supportive talk. PREPARE resulted in 51% more clinician supportive talk versus the AD alone (mean 4.5 [8.9] vs. 2.9 [6.0] utterances; incidence rate ratio 1.51 [95% CI 1.02-2.24]). Effects were most pronounced among Spanish speakers. There were no differences in information-giving or recommendations. After adjusting for active patient participation, no differences in supportive talk remained. CONCLUSIONS: The patient-directed PREPARE program was associated with greater clinician supportive ACP communication with older adults compared with an AD alone; the effect was most pronounced among Spanish speakers and was mediated by active patient participation. Thus, PREPARE helps patients be more engaged communicators, which in turn encourages clinicians to be more supportive of patients. Enhanced patient-clinician communication represents an important mechanism by which PREPARE may decrease disparities in ACP.

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.

Developing eHealth tools for diverse older adults: Lessons learned from the PREPARE for Your Care Program.

BACKGROUND/OBJECTIVES: Electronic Health (eHealth) tools offer opportunities for people to access health information online; yet, most tools are not designed to meet the unique needs of diverse older adults, leading to health disparities. Our goal was to provide guidance for the development of eHealth tools for diverse older populations for use in geriatric care models. DESIGN: Guidance for eHealth tools was compiled from user design resources and eHealth design literature. Pragmatic examples were provided from an evidenced-based eHealth tool called PREPAREforYourCare.org (PREPARE). We used quantitative feasibility data from PREPARE research studies and qualitative analysis of PREPARE focus groups, cognitive interviews, and feedback from randomized trials to further inform our recommendations. RESULTS: Guidance and lessons learned include: (1) define clear objectives and a conceptual framework; (2) co-create with the target population; (3) optimize the design and layout for accessibility and ease of use, such as text at the 5th grade reading level, closed captioning, etc.; (4) use simple, standardized navigation design; (5) use actionable information to enhance behavior change, such as modeling of behaviors; (6) align accompanying written materials with the eHealth tool; and (7) create tracking mechanisms for ongoing user feedback. PREPARE is used as a case example to provide pragmatic illustrations for how the guidance may be operationalized. CONCLUSION: eHealth tools can be tailored to the unique characteristics, preferences, and needs of diverse older populations. Following the "lessons learned" may help decrease health disparities among diverse older adults and ensure eHealth tools are readily accessible and culturally appropriate.

The PREPARE for Your Care program increases advance care planning engagement among diverse older adults with cancer.

BACKGROUND: Advance care planning (ACP) is low among older adults with cancer. In a secondary analysis of randomized trial data, the authors compared the efficacy of the PREPARE for Your Care (PREPARE) website plus an easy-to-read advance directive (AD) with an AD only among older adults with and without cancer. METHODS: Safety net, primary care patients in San Francisco were included if they were 55 years old or older, were English- or Spanish-speaking, and had 2 or more chronic conditions. The authors determined cancer diagnoses by using International Classification of Diseases, Ninth Revision/Tenth Revision codes. The primary outcome was new ACP documentation in the medical record at 15 months; the secondary outcomes were self-reported ACP engagement, ease of use, satisfaction, and depression/anxiety. The authors used mixed effects logistic and linear regression adjusted for prior ACP, health literacy, and clinician, including a cancer interaction term. RESULTS: Of 986 participants, 220 (22%) had cancer. The mean age was 63 years (SD, 6 years), 61% were women, 81% were of a minority race/ethnicity, 45% were Spanish-speaking, 39% had limited health literacy, and 27% had prior ACP. New ACP documentation was higher in the PREPARE arm versus the AD-only arm among participants with cancer (62% vs 43%; P = .01) and without cancer (38% vs 28%; P = .01), as was ACP engagement in both arms (P < .001), with no interactions by cancer. Ease of use and satisfaction were high, and depression/anxiety was low, with no differences by study arm or by cancer/no cancer. CONCLUSIONS: PREPARE plus an easy-to-read AD increased ACP documentation and engagement among diverse older adults with cancer more than an AD alone, with no increase in depression or anxiety between study arms or by cancer. PREPARE may help to decrease ACP disparities among patients with cancer. LAY SUMMARY: Advance care planning (ACP) is the process of sharing values, goals, and preferences for medical care, but engagement in ACP is low among older adults with cancer. Among 986 English- and Spanish-speaking older adults from a safety net hospital, an interactive, multimedia, web-based ACP program (PREPARE for Your Care at https://prepareforyourcare.org/) plus an easy-to-read advance directive increased ACP documentation and engagement more than an advance directive alone. There were no differences in this increase in ACP between older adults with cancer and older adults without cancer. Also, engaging in ACP did not result in increased depression or anxiety.

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

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.

Brief English and Spanish Survey Detects Change in Response to Advance Care Planning Interventions.

CONTEXT: The validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of ACP behaviors but is long. OBJECTIVES: Determine whether shorter survey versions (55-item, 34-item, 15-item, 9-item, and 4-item versions) can detect similar change in response to two well-validated ACP interventions and provide practical effect size information. METHODS: We assessed ACP engagement for 986 English- and Spanish-speaking adults in a randomized trial of PREPARE vs. an advance directive-only study arms. The survey was administered at baseline, one week, three months, six months, and 12 months. We calculated mean change scores from baseline to follow-up time points by study arm, intraclass correlation coefficients of change scores between the 82-item survey with shorter versions, and within-group and between-group effect sizes of the mean change scores. RESULTS: Shorter survey versions were able to detect within-group and between-group changes at all time points. Within-group intraclass correlations of the 82-item to shorter versions were high (0.78-0.97), and the amount of between-group differences was comparable using all survey versions. Twelve-month within-group effect sizes ranged narrowly from 0.76 to 1.05 for different survey versions in the PREPARE arm and from 0.44 to 0.64 for the advance directive-only version. Between-group effect sizes ranged narrowly from 0.24 to 0.30 for different survey versions. Results were similar when stratified by English and Spanish speakers. CONCLUSION: Shorter versions of the ACP Engagement Survey were able to detect within-group and between-group changes comparable with the 82-item version and can be useful for efficiently and effectively measuring ACP engagement in research and clinical settings.

Health Literacy Matters More Than Experience for Advance Care Planning Knowledge Among Older Adults.

BACKGROUND: Advance care planning (ACP) engagement is low among vulnerable populations, including those with limited health literacy (LHL). Limited knowledge about ACP may be a modifiable mediator of the relationship between LHL and ACP. Our goal was to determine whether health literacy is associated with ACP knowledge. DESIGN: Cross-sectional design. SETTING: A public health delivery system and Veterans Affairs Medical Center in San Francisco, CA. PARTICIPANTS: English- and Spanish-speaking patients (N = 1400). MEASUREMENTS: ACP knowledge was assessed with seven validated multiple-choice questions. Health literacy was measured using a validated scale. Sociodemographic measures included age, sex, language, education, race, health status, and social support. Prior ACP experience was defined as having documented legal forms and/or goals-of-care discussions in the medical record. We used Kruskal-Wallis tests and linear regression to examine associations of ACP knowledge with LHL, prior ACP experience, and sociodemographic factors. RESULTS: Mean age of participants was 65 (±10) years, 48% were women, 34% had LHL, 32% were Spanish speaking, 47% had high school education or less, and 70% were nonwhite. Mean 7-point knowledge scores were lower for those with limited vs adequate health literacy (3.8 [SD = 1.9 vs 5.5 (SD = 1.7); P < .001). In multivariable analysis, ACP knowledge scores were 1.0 point lower among those with LHL; 0.6 points lower among Spanish speakers and those with high school education or less; and 0.5 points lower among individuals of nonwhite race (P < .001 for all). Knowledge scores were 0.02 points lower per year of older age (P = .007) and 0.01 points higher per point of greater social support (P = .005). Prior ACP experience was not associated with knowledge after adjustment (P = .7). CONCLUSIONS: Health literacy and sociodemographics are stronger predictors than prior ACP experience of ACP knowledge. This study suggests that providing easy-to-understand ACP materials is paramount and should be offered even if patients have previous experience with the ACP process. J Am Geriatr Soc 67:2151-2156, 2019.

Symptom Assessment Solutions for In-Home Supportive Services and Diverse Older Adults: A Roadmap for Change.

BACKGROUND: Millions of older adults require Medicaid-funded home care, referred to as In-Home Supportive Services (IHSS). Many of these individuals experience serious illness, disability, and common symptoms such as pain and shortness of breath. OBJECTIVE: To explore whether and how to integrate symptom assessment into an IHSS program to identify and manage symptoms in diverse older adults who receive in-home care. DESIGN: Qualitative study comprising 10 semistructured focus groups. SETTING AND SUBJECTS: Fifty San Francisco IHSS administrators, case managers, providers, and consumers. MEASUREMENTS: Two authors double-coded transcripts and conducted thematic analysis. RESULTS: Four main themes emerged from the data: (1) Large unmet needs: gaps in understanding, training, standard assessment, and untreated symptoms, including identifying loneliness as a symptom; (2) Potential barriers: misunderstanding of palliative care, consumer reluctance, and the added burden on IHSS workforce; (3) Facilitators: consumer and provider buy-in and perceived benefits of such a symptom assessment program, and the ability to build on current IHSS relationships and infrastructure; and (4) Implementation logistics: taking an individualized, optional approach; consider appropriate messaging about quality of life and not end of life; and creating standardized, easy-to-use procedures, tools, training, and workflow to support providers. CONCLUSIONS: An IHSS symptom assessment program is desired, needed, and feasible and can leverage the established IHSS infrastructure and relationships of consumers and IHSS providers to assess symptoms in the home. Acknowledging consumer choice, developing appropriate tools and trainings for IHSS staff, and effective messaging of program goals can contribute to success.