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.

Using behavioral theory to adapt advance care planning for homeless-experienced older adults in permanent supportive housing.

BACKGROUND: Older adults experiencing chronic homelessness (i.e., prolonged homelessness and a disabling condition) have low rates of advance care planning (ACP) despite high rates of morbidity and mortality. Rehousing of homeless-experienced individuals into permanent supportive housing (PSH) may present an opportunity to introduce ACP; but this is unknown. Therefore, we explored staff and resident perceptions of conducting ACP in PSH. METHODS: We conducted semi-structured interviews with PSH staff (n = 13) and tenants (PSH residents) (n = 26) in San Francisco. We used the capability (C), opportunity (O), motivation (M), behavior (COM-B) framework within the Behavior Change Wheel model and the Theoretical Domains Framework (TDF) to inform interviews, categorize themes, and guide qualitative thematic analysis. RESULTS: The mean age of PSH residents was 67 (SD = 6.1) years and 52% were women. Of staff, 69% were women. Important COM-B barriers included ACP complexity (C), complicated relationship dynamics (O), resource limitations (O), pessimism (M), variable staff confidence (M), and competing priorities (M). Facilitators included easy-to-use documents/videos, including the PREPARE for Your Care program (C), stability with housing (O), exposure to health crises (O), potential for strong relationships (O), and belief that ACP is impactful (M). Recommendations included adapting materials to the PSH setting, providing staff trainings/scripts, and using optional one-on-one or group sessions. CONCLUSIONS: We identified behavioral determinants related to ACP for formerly chronically homeless older adults in PSH. Future interventions should include using easy-to-use ACP materials and developing resources to educate PSH residents, train staff, and model ACP in groups or one-on-one sessions.

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.

A Toolkit for Community-Based, Medicaid-Funded Case Managers to Introduce Advance Care Planning to Frail, Older Adults: A Pilot Study.

Background: Advance care planning (ACP) among frail, older adults receiving in-home care is low. Leveraging case managers to introduce ACP may increase engagement. Objective: Pilot an ACP-Toolkit for case managers and their clients. Design: Feasibility pilot of an ACP-Toolkit for case managers to introduce ACP and the PREPAREforYourCare.org website and advance directives. Setting/Subjects: Case managers from four local aging service organizations who referred English-speaking clients ≥55 years old. Measurements: Using validated surveys (five-point Likert scales), we assessed changes in case managers' attitudes, confidence, and readiness to facilitate ACP and clients' readiness to engage in ACP from baseline to follow-up (one-week) using Wilcoxon signed-rank tests. Results: We enrolled 9 case managers and 12 clients (median age 69 [standard deviation 8], 75% minority race/ethnicity). At follow-up, case managers' confidence increased (3.2 [0.7] to 4.2 [0.7]; p = 0.02), and clients' readiness increased (2.8 [1.5] to 3.4 [1.4]; p = 0.06). All case managers agreed the Toolkit was easy to use, helped start ACP conversations, and would recommend it to others. All clients found the Toolkit easy to understand and were comfortable with case managers using it. Nearly all clients (92%) would recommend it to others. Suggestions for improvement included offering the Toolkit in other languages and disseminating it in clinical and community settings. Conclusions: The ACP-Toolkit resulted in higher case manager confidence in facilitating ACP and client readiness to engage in ACP, and usability was high. A brief ACP-Toolkit may be a feasible solution to increase ACP engagement among frail, older adults receiving in-home care.

Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study.

Background: Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting caregivers in symptom assessment (SA) may reduce suffering. Objective: Pilot an SA-Toolkit for caregivers to assess older adults' symptoms at home. Design: Pilot study. Setting/Subjects: English-speaking patients ≥65 years of age and their caregivers from a home-based geriatrics program in San Francisco. Measurements: With multiple stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, validated Faces Scale, and easy-to-use tracking system with phone numbers of family/friends/clinicians. At baseline and one week, we assessed change in patients' symptoms and caregivers' self-efficacy with SA (5-point scale) using Wilcoxon signed-rank tests. We assessed acceptability at one week. Results: Eleven patient/caregiver dyads participated in the study. Patients were 84.7 years old (SD 5.7), 81.8% women, 27.3% non-white. From baseline to one week, mean number of symptoms decreased (3.7 [1.5] to 2.6 [1.8], p = 0.03). Specifically, patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 [0.3] to 4.8 [0.3], p = 0.09). Patients found the symptom illustrations easy to use (8.7 on 10-point scale), but the Faces Scale less so (7.3/10) because it provided "too many choices." Caregivers liked the SA-Toolkit because it was easy to use; nearly all (10/11, 90%) would recommend it to others. Conclusions: The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in SA. The SA-Toolkit is acceptable and may help reduce suffering in frail, older patients.