Advance Care Planning Engagement Research Articles

Advance care planning in British Columbia: awareness and engagement (2012–2020)

ObjectivesThis study examines trends in advance care planning (ACP) awareness, engagement, attitude and experiences among the public in British Columbia (BC), Canada, from 2012 to 2020. This time period is...

Validating care and treatment scenarios for measuring decisional conflict regarding future care preferences among older adults.

Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision-making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life-sustaining treatments and care utilisation to inform their broader use in ACP studies. Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31-.37, p < .001), and ACP engagement (r's = -.41 to -.37, p < .001) indicated convergent validity. A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life-limiting conditions and five current or former care partners.

A Mixed-Methods Comparison of Interventions to Increase Advance Care Planning.

Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention. All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P < .0001). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others. While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.

Patient Navigator Intervention to Improve Palliative Care Outcomes for Hispanic Patients With Serious Noncancer Illness

Disparities persist across the trajectory of serious illness, including at the end of life. Patient navigation has been shown to reduce disparities and improve outcomes for underserved populations. To determine the effectiveness of a lay patient navigator intervention, Apoyo con Cariño, in improving palliative care outcomes among Hispanic patients. This was a multicenter randomized clinical trial that took place across academic, nonprofit, safety-net, and community health care systems in urban, rural, and mountain/frontier regions of Colorado from January 2017 to January 2021. Self-identifying Hispanic adults with serious noncancer medical illness and limited prognosis were recruited. Data were collected and analyzed from July 2022 to July 2023. Participants randomized to the intervention group received 5 home visits from a bilingual, bicultural lay patient navigator; participants randomized to control received care as usual. Both groups received culturally tailored educational materials. Investigators/outcome accessors remained blinded to participant assignment. Change in score from baseline to 3 months on the Functional Assessment of Chronic Illness Therapy (FACIT) General quality of life (QOL) scale (primary outcome), Advance Care Planning (ACP) Engagement Survey, Brief Pain Inventory, Edmonton Symptom Assessment Scale, and FACIT Spiritual Well-Being subscale; at 6 months, advance directive (AD) documentation; and at 46 months or death, hospice utilization and length of stay, as well as aggressiveness of care at end of life. Of 209 patients enrolled (mean [SD] age, 63.6 [14.3] years; 108 [51.7%] male), 105 patients were randomized to control and 104 patients to the intervention. There were no statistically significant differences in the change in mean (SD) QOL score between the intervention and control groups (5.0 [16.5] vs 4.3 [15.5]; P = .75). Participants in the intervention group, compared with the control group, had statistically significant greater increases in mean (SD) ACP engagement (0.8 [1.3] vs 0.1 [1.4]; P < .001) and were more likely to have a documented AD (62 of 104 [59.6%] vs 28 of 105 [26.9%]; P < .001). There were no statistically significant differences in mean (SD) change in pain intensity score (0-10) between patients in the intervention group compared with control (-0.4 [2.6] vs -0.5 [2.8]; P = .79), nor pain interference (-0.2 [3.7] vs -0.4 [3.7]; P = .71). Patients receiving the intervention were more likely to be referred to hospice compared with patients receiving control (19 of 43 patients [44.2%] vs 7 of 33 patients [21.2%]; P = .04) and less likely to receive aggressive care at end of life (27 of 42 patients [64.3%] vs 28 of 33 patients [84.8%]; P = .046). In this randomized clinical trial, a culturally tailored patient navigator intervention did not improve QOL for patients. However, the intervention did increase ACP engagement, AD documentation, and hospice utilization in Hispanic persons with serious medical illness. ClinicalTrials.gov Identifier: NCT03181750.

Cognitive abilities and engagement in advance care planning among older adults: Results of a Swiss populational study.

Individuals often wait until the last moment to plan their end-of-life (EOL) care. Yet, decision-making capacity decreases with age, which could compromise engagement in and the effectiveness of advance care planning (ACP). Little is known about the association between cognitive abilities and the steps involved in the multifaceted process of ACP in older adults. The present study aims to better understand the association of global cognitive competence with engagement in ACP in a nationally representative sample of older adults in Switzerland. Global cognitive competence was measured via verbal fluency, immediate and delayed memory, basic calculation skills, and temporal orientation. Engagement in ACP included approving advance directives, having discussed EOL preferences, having a living will, and having a health care proxy. We analyzed data of 1,936 respondents aged 55+ from a paper-and-pencil questionnaire that was administered as part of Wave 6 (2015) of the Survey of Health, Ageing and Retirement in Europe in Switzerland using logistic regression models. Respondents with reduced global cognitive competence are less likely to have discussed their EOL preferences with others and to have a living will. Our results also indicate an interaction between age and cognition with respect to having a living will. Individuals with lower global cognitive competence in the oldest age group-adults aged 75 and older-are less likely to have a living will. Our findings highlight that low global cognitive competence can be seen as a barrier to engagement in ACP, particularly among adults 75 years and older. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

PERCEIVED BARRIERS AND SOCIOCULTURAL FACTORS OF ADVANCE CARE PLANNING AMONG CHINESE AMERICAN OLDER ADULTS

Abstract Despite documented benefits of advance care planning (ACP), persistent racial and ethnic disparities exist in ACP engagement. This study, guided by a social ecological model, examined perceived barriers and sociocultural factors associated with informal ACP conversations among Chinese American older adults. A purposive sample of 281 community-dwelling older Chinese Americans aged 55 years or older in Arizona and Maryland completed a survey in 2018. The average age of participants was 77.8 (SD = 9.4) and the average number of years living in the U.S. was 24.9 years (SD = 13.4). Most participants were first-generation immigrants (94.7%) and reported Chinese as their primary language (91.8%). About 26.5% of participants had ACP conversations with family. Hierarchical logistic regression results suggest that more perceived barriers were associated with lower odds of ACP conversations (OR = 0.87, p &amp;lt; 0.01). Sociocultural factors were associated with greater odds of ACP conversations, including more years in the U.S. (OR = 1.04, p = 0.02) and English language proficiency (OR = 11.85, p = 0.02). Social support had a significant moderation effect (b = -.01, p &amp;lt; 0.01), indicating a larger effect of perceived barriers on ACP conversations among those with lower social support. Findings highlighted the importance of language services, translated informational materials, and social support in facilitating ACP discussions among Chinese American older adults. Community-based ACP facilitators who have both language skills and cultural competence may be particularly beneficial in engaging this population. Effective ways to reduce barriers to ACP at various levels are needed.

HOW DO EDUCATION AND SOCIAL MEDIA USE MATTER FOR ADVANCE CARE PLANNING AMONG CHINESE OLDER ADULTS?

Abstract In general, the rate of advance care planning (ACP) engagement is low in Chinese societies globally. Few studies have compared the ACP engagement among Chinese in different regions. This study aims to examine and compare the associations between education, social media use, and advance care planning (ACP) discussion among Chinese older adults in mainland China (Wuhan), Taiwan (Taichung), and United States (Honolulu). Community-dwelling older adults ≥ 55 were recruited from 2017 to 2018. The ACP discussion rate in Wuhan, Taichung, and Honolulu were 15.2%, 19.2%, and 31.3%, respectively. Logistic regression models reveal that education was positively associated with ACP discussion in Taichung and Honolulu. Social media use was positively associated with ACP discussions in Wuhan and Honolulu, and it attenuated the association between education and ACP discussion in Honolulu. The present study contributes to previous research by comparing the association between education, social media use, and ACP discussion in different settings within the same ethnicity. Practice interventions may need use a social media as a tool to promote advance care planning among Chinese older adults where the palliative care is in the initial stage. Form a policy standpoint, it is important to develop palliative care while promoting advance care planning.

Psychometric Properties of the Advance Care Planning Engagement Survey-9 in Cardiovascular and Metabolic Diseases.

The purpose of this study was to test the reliability and validity of the Advance Care Planning Engagement Survey-9 Korean version in patients with cardiovascular diseases or metabolic syndrome. In this cross-sectional study, data on advance care planning engagement, registration of advance directives and the intention, and sociodemographic characteristics were collected from 105 patients (mean age, 66.3 years) at 4 medical institutions. Cronbach α was used to test the reliability. Confirmatory factor analysis and independent t tests were used to test the validity. Cronbach α s for the total scale and the self-efficacy and readiness dimensions were .93, .82, and .97, respectively. In confirmatory factor analysis with 2 factors, all indices of model fit were acceptable: comparative fit index, 0.995; Tucker-Lewis index, 0.989; standardized root-mean-square residual, 0.024; root-mean-square error of approximation, 0.059; and factor loadings > 0.65. Patients who registered advance directives ( P < .001) or had the intention ( P < .001) had higher scores of the Advance Care Planning Engagement Survey-9 Korean version than their counterparts. The findings demonstrate that the Advance Care Planning Engagement Survey-9 Korean version was a reliable and valid instrument. Health care providers, including nurses, can use this instrument to assess and manage advance care planning engagement in Korean patients with cardiovascular diseases or metabolic syndrome.

Telehealth Serious Illness Care Program for Older Adults with Acute Myeloid Leukemia and Myelodysplastic Syndromes: A Single-Arm Pilot Study

Introduction: Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) often feel shocked and bewildered about their diagnosis. Serious illness conversations (SICs) may increase patient's disease understanding and better prepare them for the future. However, SICs currently tend to happen late in the disease course. One reason is clinician-perceived patient discomfort. Telehealth may promote patient comfort by allowing SICs to take place from home. We previously conducted a qualitative study to adapt the Serious Illness Care Program (SICP) for delivery via telehealth to promote early SICs among older adults with AML and MDS. The purpose of this study was to assess the feasibility and usability of the telehealth-delivered SICP for older patients with AML and MDS. Methods: We conducted a single-arm pilot study and recruited patients aged ³60 years with AML or MDS and their caregivers. Participants underwent a 30- to 60-minute adapted SICP visit with their oncology clinician. The SICP includes: 1) Geriatric assessment of aging-related vulnerabilities, 2) Patient preparation pamphlet to prepare patients to talk about their values, 3) Clinician preparation email, 4) The Serious Illness Care Guide (SICG) used by clinicians during the SICP visit, 5) Documentation template for clinicians to use in the electronic health record, and 6) Family guide to assist patients with discussing their values with loved ones. Feasibility was measured using retention rate (i.e., completion of the SICP visit; &amp;gt;80% was considered feasible). Usability was measured using the telehealth usability questionnaire (TUQ, range 1-7; a score of &amp;gt;5 was considered feasible). We collected secondary outcome measures including acceptability of the SICP, advance care planning (ACP) engagement, disease understanding, and healthcare communication. Healthcare communication was assessed using the adapted 6-item Health Care Communication Questionnaire [(HCCQ), range 0-20; higher score is better] and the 1-item Heard and Understood question (range 0-4; higher score is better). Hypothesis testing was performed at α=0.10 (two-tailed) due to the pilot nature of this study. We elicited participant feedback through audio recorded semi-structured interviews. Interviews were transcribed verbatim and two investigators independently coded transcripts using MAXQDA. Results: We included 20 patients (mean age=75; SD 5.9, range 63-87) and 6 caregivers (mean age=64; SD 13.7, range 44-77). The majority of patients and caregivers were White (patients: 85%, 17/20; caregivers 100%, 6/6) and non-Hispanic (patients: 80.0%, 16/20; caregivers: 83.3%, 5/6). Of the 19 SICP visits, 13 took place via video call, 5 took place via telephone, and 1 visit took place in person. We found the SICP to be feasible (retention rate: 95%). Mean TUQ scores were 5.9 (SD 0.9) and 5.9 (SD 1.1) for patients and caregivers, respectively, indicating that the SICP was usable. In terms of acceptability, the majority of patients felt the SICP increased their sense of control over medical decisions (58.8%, 10/17) and closeness with their clinician (75.0%, 12/16). From baseline to post-intervention, ACP engagement scores increased numerically [mean +0.4 (SD 1.0); p=0.12]. At post-intervention, compared to pre-intervention measures, patient's estimates of curability and life expectancy aligned more closely with clinicians. Mean scores for HCCQ and Heard and Understood were 18.3 (SD 2.1) and 3.5 (SD 0.5) for patients, respectively. Mean scores for HCCQ and Heard and Understood were 18.2 (SD 2.9) and 3.7 (SD 0.5) for caregivers, respectively. In qualitative interviews, most patients (89.5%, 17/19) and caregivers (100%, 6/6) said they would recommend a SICP visit to others. The majority of patients (94.7%; 18/19) and caregivers (83.3%; 5/6) felt that the patient was prioritized during the SICP visit. Participants appreciated the comfort of telehealth during their SICP visit, felt the SICP visit provided them with the opportunity to share their wishes with their oncology clinician, and said that the SICP visit eased their worries. Conclusion: In this study, we found the adapted SICP to be feasible and usable, and well-liked by patients and their caregivers. It has the potential to improve patient disease understanding, strengthen the patient-clinician relationship, and help clinicians align care to what matters most to patients and their families.

Abstract 13088: The Psychometric Properties of the Advance Care Planning Engagement Survey in Cardiovascular Diseases

Background: Patients with cardiovascular diseases (CVDs) have high mortality rates, and the progress is uncertain. Advance care planning (ACP) can help these patients and their caregivers prepare for expected or unexpected end-of-life situations effectively. However, the implementation of ACP is suboptimal in this population, resulting in unnecessary suffering of patients and their caregivers and increased health costs. Different versions of the Advance Care Planning Engagement Survey (ACPES) have been used to assess ACP engagement. However, the comprehensive psychometric properties of the ACPES-9 have not been tested in South Korea. Aim: To test the reliability and validity of the ACPES-9 in patients with CVDs. Hypothesis: The reliability of the ACPES-9 is supported by Cronbach’s alpha ≥ .70, and the validity is supported by meeting the cut points of good model fit indices (chi-square test: not significant, CFI ≥ .95, TLI ≥ .95, SRMR &lt; .05, and RMSEA &lt; .07) with factor loadings &gt; .40 in confirmatory factor analysis (CFA) and significant associations of ACP engagement with registration of advance directive (AD) and the intention. Methods: In this cross-sectional study, data on ACP engagement (ACPES-9) and registration of ADs and the intention and sociodemographic characteristics (sample characteristics questionnaire) were collected from 4 hospitals or public health centers (N = 105, mean age: 66.3) between February and March, 2023. Cronbach’s alpha was used to test the reliability. Confirmatory factor analysis and independent t-tests were used to test the validity. Results: Cronbach’s alphas for the total scale and self-efficacy and readiness dimensions were .93, .82, and .97, respectively. In CFA with two factors, all indices of model fit were acceptable: chi-square test = 21.76, p = .151; CFI = .995; TLI = .989; SRMR = .024; RMSEA = .059). All factor loadings were &gt; .65. Patients who registered AD (35.3 vs. 24.3, p &lt; .001) or had the intention (28.9 vs. 20.6, p &lt; .001) had higher scores of the ACPES-9 than their counterparts, respectively. Conclusions: The findings demonstrate that the ACPES-9 was a reliable and valid instrument by supporting the hypothesis. Healthcare providers can use this instrument to assess and manage ACP engagement in patients with CVDs.

Advance care planning among older cancer survivors in the United States.

91 Background: The goal of advance care planning (ACP) is to ensure that end-of-life (EOL) care is consistent with patient wishes and preferences. The ACP is particularly relevant to older adults with cancer due to their high risk of mortality. However, it remains unclear whether older cancer survivors have a higher rate of ACP engagement than general older adults. Methods: We used data from the National Health and Aging Trends Study (NHATS) Round 8, a nationally representative study of adults aged ³65. This cross-sectional analysis included 4,666 participants (1,568 cancer survivors), representing 33.93 million older Americans in 2018. The ACP was defined as having any of the three self-reported elements of ACP: EOL discussion, durable power of attorney (DPOA), or living will/advance directive. Cancer survivors were identified by self-reported cancer in Round 8 or prior rounds. Covariates were self-reported, including age, sex, race, marital status, education level, income, number of comorbidities, number of limitations in activities of daily living (ADL) and probable/possible dementia. We used logistic regressions to examine the association of cancer diagnosis and ACP engagement, adjusting for covariates and complex survey design and weights. Results: Older cancer survivors reported a higher rate of ACP engagement (80.10% vs 73.39), EOL discussion (66.94% vs 60.92%), DPOA (58.56% vs 51.02%) and living will/advance directive (63.34% vs 52.81%), compared to older adults without cancer. However, in adjusted logistic models, there was not significant difference between the two groups in ACP engagement (adjusted OR=1.12, 95% CI: 0.93, 1.36, P=0.22), EOL discussion (adjusted OR=1.08, 95% CI: 0.91, 1.29, P=0.37), DPOA (adjusted OR=1.07, 95% CI: 0.90, 1.28, P= 0.42) or living will/advance directive (adjusted OR=1.20, 95% CI: 1.00, 1.45, P=0.05). The oldest old (&gt;80 years), women, White people, single/not married, with higher education, income, comorbidities and ADL limitations were more likely to engage in ACP (all P&lt;0.01). The associations were similar across models that explored the individual elements of ACP. Conclusions: Despite the high mortality risk, older cancer survivors are not more likely to engage in ACP than the general older adults. About 20% of US older cancer survivors have not engaged in any form of ACP. Hospital, clinic and community strategies to introduce and encourage ACP among older cancer survivors are needed, especially for those minority populations.

"At the End I Have a Say": Engaging the Chinese Community in Advance Care Planning.

Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP. Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events. A Chinese Community Committee (N=19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4=most ready); and assessed event acceptability. A total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events. Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.

I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations

Advance Care Planning (ACP) is a communication process about serious illness decision making designed to inform patients of possible medical options. Native Hawaiians consistently have low rates of ACP and low use of palliative and hospice care services. Our multidisciplinary community and research group partnered to create I kua na'u “Let Me Carry Out Your Last Wishes,” an ACP intervention featuring culturally tailored videos and are now testing its efficacy. Focus groups and informant interviews were conducted with Native Hawaiian community members to ensure the curriculum honored the history, opinions, and culture of Native Hawaiians. Native Hawaiian culture has traditionally been an oral culture; the spoken word transmitted the moʻolelo, stories, traditions, histories and genealogies, which merges seamlessly with video media. The I kua na'u intervention included multiple educational sessions enhanced with videos (informational and personal). The specific aims are to compare ACP knowledge (primary outcome) and readiness for ACP engagement, ACP preferences, decisional conflict, and ACP completion rates via electronic medical record review (secondary outcomes) in 220 Native Hawaiians over age 55 in: (a) a randomized controlled trial of 110 people recruited from ambulatory clinics, and (b) a pre-post study design among 110 people living on Hawaiian Homestead communities located on lands set aside for Native Hawaiians or assisted living.Our protocol aims to evaluate the efficacy of our video-based educational intervention for Native Hawaiians to support decision making in this community and decrease disparities in serious illness care.Clinical Trial Registration Number: NCT04771208

American Muslim Engagement With Advance Care Planning: Insights From a Community Survey.

Background and Objectives: Advance Care Planning (ACP) is a critical tool in advancing patient self-determination in health care delivery. Despite increasing research into racial/ethnic minorities' engagement with ACP in the US, studies on Muslim Americans are relatively scarce. We aimed to examine levels of ACP engagement among Muslim adults and measure associations between socio-demographic and religiosity characteristics and ACP engagement. Methodology: This was a survey study among Muslims attending mosque seminars in Chicago and Washington DC. Religiosity characteristics were assessed using a modified version of the Duke University Religion Index (DUREL) and the Psychological Measure of Islamic Religiousness (PMIR). ACP engagement was measured by the 4-item ACP Engagement Survey (4-ACPES) and 2 additional items covering ACP religious dimensions. Statistical analyses were performed using SPSS 28.0. Results: Out of 152 respondents, 56.2% to 72.6% were in the pre-contemplation stage of ACP across the 6 ACP items. Bivariate analyses showed that ACP engagement was correlated with participant age, ethnicity, duration of stay in the US and country of birth. Multivariable analyses demonstrated no association between religiosity characteristics and ACP engagement; independent predictors of ACP engagement were race/ethnicity (being South Asian), country of birth (born outside the US) and duration of stay in the US (longer years). Discussion/Conclusion: Our study suggests that American Muslims are largely unprepared to engage with ACP. Moreover, religiosity does not predict ACP engagement. We call for greater community outreach and educational programs that instill awareness and knowledge on the importance of ACP, and provide resources for tailored religiously-oriented conversations that assist individuals with ACP.

Community-led, peer-facilitated Advance Care Planning workshops prompt increased Advance Care Planning behaviors among public attendees

ObjectiveDespite recognized benefits, engagement in Advance Care Planning (ACP) remains low. Research into peer-facilitated, group ACP interventions is limited. This study investigated the acceptability of community-led peer-facilitated ACP workshops for the public and whether these workshops are associated with increased knowledge, motivation and engagement in ACP behaviors. MethodsPeer-facilitators from 9 community organizations were recruited and trained to deliver free ACP workshops to members of the public with an emphasis on conversation. Using a cohort design, workshop acceptability and engagement in ACP behaviors was assessed by surveying public participants at the end of the workshop and 4–6 weeks later. Results217 participants returned post-workshop questionnaires, and 69 returned follow-up questionnaires. Over 90% of participants felt they gained knowledge across all 6 learning goals. Every ACP behavior saw a statistically significant increase in participant completion after 4–6 weeks. Almost all participants were glad they attended (94%) and would recommend the workshop to others (95%). ConclusionThis study revealed an association of peer-facilitated ACP workshops and completion of ACP behaviors in public participants. InnovationThis innovative approach supports investment in the spread of community-based, peer-facilitated ACP workshops for the public as important ACP promotion strategies.

A communication intervention to improve prognostic understanding and engagement in advance care planning among diverse advanced cancer patient-caregiver dyads: A pilot study.

Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient-caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers. Patients with advanced cancer and their caregivers (n=22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP. TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives. TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.

Predictors of Advance Care Planning Engagement Among Muslim Americans

Predictors of Advance Care Planning Engagement Among Muslim Americans

“Now I get what’s important” - Shifting philosophies of hospice society staff and trained volunteers involved in peer-facilitated Advance Care Planning workshops for the public

ObjectiveCommunity-led approaches can increase public engagement in Advance Care Planning (ACP). Better understanding of the experiences and perspectives of community staff and volunteers who host and facilitate community-led, peer-facilitated ACP workshops is valuable when considering the spread of these approaches. MethodsContent analysis of qualitative data from community-based hospice societies delivering ACP workshops to the public in British Columbia: one-on-one interviews with 5 organizational representatives and focus groups with 13 peer facilitators. ResultsThree main categories emerged: 1) ACP is about ‘Living well’; 2) Transitioning focus from legal forms to conversations; 3) Benefits to all involved. ConclusionsCommunity staff and volunteers acknowledge the role they could play in promoting ACP in their communities. They recognize the benefits to the facilitators and public participants from following a community-led approach that emphasizes the importance of ACP conversations over the completion of relevant legal forms. Additional potential benefits of this approach, as reported by the organizational representatives, are increased volunteer engagement, more community partnerships, and an enhanced organizational profile. Practice implicationsThis community-led model can be a meaningful and approachable way to engage the public in ACP. Hospice societies are well positioned in the community to incorporate ACP workshops into their programming.

Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer.

The goal of this study was to develop and optimize an intervention designed to address barriers to engagement in advance care planning (ACP) among Latino patients with advanced cancer. The resulting intervention, titled Planning Your Advance Care Needs (PLAN), is grounded in theoretical models of communication competence and sociocultural theory. An initial version of the PLAN manual was developed based on a prior intervention, Ca-HELP, that was designed to improve communication around pain among cancer patients. PLAN uses this framework to coach patients on how to plan for and communicate their end-of-life care needs through ACP. In the present study, feedback was obtained from key stakeholders (n = 11 patients, n = 11 caregivers, n = 10 experts) on this preliminary version of the PLAN manual. Participants provided ratings of acceptability and feedback around the intervention content, format, design, modality, and delivery through quantitative survey questions and semi-structured qualitative interviews. Results indicated that the PLAN manual was perceived to be helpful and easy to understand. All stakeholder groups liked the inclusion of explicit communication scripts and guidance for having conversations about ACP with loved ones and doctors. Specific feedback was given to modify PLAN to ensure it was optimized and tailored for Latino patients. Some patients noted reviewing the manual motivated engagement in ACP. Feedback from stakeholders resulted in an optimized, user-centered version of PLAN tailored to Latino patients. Future research will examine the acceptability, feasibility, and potential efficacy of this intervention to improve engagement in ACP.

Disparities in advance care planning among older US immigrants.

Despite known racial disparities in advance care planning (ACP), little is known about ACP disparities experienced by US immigrants. We used data from the 2016 wave of the Health and Retirement Study. We defined ACP engagement as self-reported end-of-life (EOL) discussions, designation of a power of attorney (DPOA), documented living will, or "any" of the three behaviors. Immigration status was determined by respondent-reported birth outside the United States. Time in the United States was calculated by subtracting the year of arrival in the United States from the survey year of 2016. We used multivariable logistic regression to estimate the association between ACP engagement and immigration status and the relationship of acculturation to ACP engagement, adjusting for sociodemographics, religiosity, and life expectancy. Of the total cohort (N = 9928), 10% were immigrants; 45% of immigrants identified as Hispanic. After adjustment, immigrants had significantly lower adjusted probability of any ACP engagement (immigrants: 74% vs. US-born: 83%, p < 0.001), EOL discussions (67% vs. 77%, p < 0.001), DPOA designation (50% vs. 59%, p = 0.001) and living will documentation (50% vs. 56%, p = 0.03). Among immigrants, each year in the United States was associated with a 4% increase in the odds of any ACP engagement (aOR 1.04, 95% CI 1.03-1.06), ranging from 36% engaged 10 years after immigration to 78% after 70 years. ACP engagement was lower for US immigrants compared to US-born older adults, particularly for those that recently immigrated. Future studies should explore strategies to reduce disparities in ACP and the unique ACP needs among different immigrant populations.