Dataset Information

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

ABSTRACT:

Context

Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP.

Objectives

Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events.

Methods

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.

Results

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.

Conclusion

Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.

SUBMITTER: Nouri S

PROVIDER: S-EPMC10593504 | biostudies-literature | 2023 Nov

REPOSITORIES: biostudies-literature

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Publications

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

Nouri Sarah S Li Lingsheng L Huang Carrie C Chung Anni A Stokes Sandy Chen SC Pan Shirley S Wong Elizabeth C EC Newman Jeffrey J Woo Joseph W JW Cheng Joyce J Tan Charissa H CH Wertz Molly M Wood-Hughes Elyse E Quinn Mara M Pantilat Steven Z SZ Lyles Courtney R CR Ritchie Christine S CS Sudore Rebecca L RL

Journal of pain and symptom management 20230801 5

<h4>Context</h4>Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP.<h4>Objectives</h4>Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events.<h4>Methods</h4>A Chinese Community Committee (N = 19 community-based organization leaders, health system representatives, community members) conducted focus groups ...[more]

PMID: 37536524

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Project description:Advance planning for end-of-life care has gained acceptance, but actual end-of-life care is often incongruent with patients' previously stated goals. We assessed the flow of advance care planning information from patients to medical records in a community sample of older adults to better understand why advance care planning is not more successful.Our study used structured interview and medical record data from community-dwelling older patients in two previous studies: Assessing Care of Vulnerable Elders (ACOVE)-1 (245 patients age > or = 65 years and screened for high risk of death/functional decline in 1998-1999) and ACOVE-2 (566 patients age > or = 75 who screened positive for falls/mobility disorders, incontinence, and/or dementia in 2002-2003). We compared interview data on patients' preferences, advance directives, and surrogate decision-makers with findings from the medical record.In ACOVE-1, 38% of surveyed patients had thought about limiting the aggressiveness of medical care; 24% of surveyed patients stated that they had spoken to their doctor about this. The vast majority of patients (88%-93%) preferred to die rather than remain permanently in a coma, on a ventilator, or tube fed. Regardless of patients' specific preferences, 15%-22% of patients had preference information in their medical record. Among patients who reported that they had completed an advance directive and had given it to their health-care provider, 15% (ACOVE-1) and 47% (ACOVE-2) had advance directive information in the medical record. Among patients who had not completed an advance directive but had given surrogate decision-maker information to their provider, 0% (ACOVE-1) and 16% (ACOVE-2) had documentation of a surrogate decision-maker in the medical record.Community-dwelling elders' preferences for end-of-life care are not consistent with documentation in their medical records. Electronic health records and standardized data collection for end-of-life care could begin to ameliorate this problem.

Project description:BackgroundAdvance care planninganning (ACP) is a priority within palliative care service provision. Nurses working in the community occupy an opportune role to engage with families and patients in ACP. Carers and family members of palliative patients often find ACP discussions difficult to initiate. However, community nurses caring for palliative patients can encourage these discussions, utilising the rapport and relationships they have already built with patients and families. Despite this potential, implementation barriers and facilitators continue to exist. To date, no research synthesis has captured the challenges community nurses face when implementing ACP, nor the facilitators of community nurse-led ACP. Considering this, the review question of: 'What factors contribute to or hinder ACP discussion for nurses when providing care to palliative patients?' was explored.MethodTo capture challenges and facilitators, a global qualitative scoping review was undertaken in June 2023. The Arksey and O'Malley framework for scoping reviews guided the review methodology. Six databases were searched identifying 333 records: CINAHL (16), MEDLINE (45), PUBMED (195), EMBASE (30), BJOCN (15), IJOPN (32). After de-duplication and title and abstract screening, 108 records remained. These were downloaded, hand searched (adding 5 articles) and subject to a full read. 98 were rejected, leaving a selected dataset of 15 articles. Data extracted into a data extraction chart were thematically analysed.ResultsThree key themes were generated: 'Barriers to ACP', 'Facilitators of ACP' and 'Understanding of professional role and duty'. Key barriers were - lack of confidence, competence, role ambiguity and prognostic uncertainty. Key facilitators concerned the pertinence of the patient-practitioner relationship enabling ACP amongst nurses who had both competence and experience in ACP and/or palliative care (e.g., palliative care training). Lastly, nurses understood ACP to be part of their role, however, met challenges understanding the law surrounding this and its application processes.ConclusionsThis review suggests that community nurses' experience and competence are associated with the effective implementation of ACP with palliative patients. Future research is needed to develop interventions to promote ACP uptake in community settings, enable confidence building for community nurses and support higher standards of palliative care via the implementation of ACP.

Project description:BackgroundResources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience.AimTo collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families.MethodsRapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services.Results246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare.ConclusionsWe present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life.

Project description:ImportanceAdvance care planning improves the receipt of medical care aligned with patients' values; however, it remains suboptimal among diverse patient populations. To mitigate literacy, cultural, and language barriers to advance care planning, easy-to-read advance directives and a patient-directed, online advance care planning program called PREPARE For Your Care (PREPARE) were created in English and Spanish.ObjectiveTo compare the efficacy of PREPARE plus an easy-to-read advance directive with an advance directive alone to increase advance care planning documentation and patient-reported engagement.Design, setting, and participantsA comparative efficacy randomized clinical trial was conducted from February 1, 2014, to November 30, 2017, at 4 safety-net, primary-care clinics in San Francisco among 986 English-speaking or Spanish-speaking primary care patients 55 years or older with 2 or more chronic or serious illnesses.InterventionsParticipants were randomized to PREPARE plus an easy-to-read advance directive (PREPARE arm) or the advance directive alone. There were no clinician-level or system-level interventions. Staff were blinded for all follow-up measurements.Main outcomes and measuresThe primary outcome was documentation of new advance care planning (ie, legal forms and/or documented discussions) at 15 months. Patient-reported outcomes included advance care planning engagement at baseline, 1 week, 3 months, 6 months, and 12 months using validated surveys. Intention-to-treat analyses were performed using mixed-effects logistic and linear regression, controlling for time, health literacy, and baseline advance care planning, clustering by physician, and stratifying by language.ResultsAmong the 986 participants (603 women and 383 men), the mean (SD) age was 63.3 (6.4) years, 387 of 975 (39.7%) had limited health literacy, and 445 (45.1%) were Spanish speaking. No participant characteristic differed between the 2 groups, and retention was 85.9% (832 of 969) among survivors. Compared with the advance directive alone, PREPARE resulted in a higher rate of advance care planning documentation (unadjusted, 43.0% [207 of 481] vs 33.1% [167 of 505]; P < .001; adjusted, 43.0% vs 32.0%; P < .001) and higher self-reported increased advance care planning engagement scores (98.1% vs 89.5%; P < .001). Results remained significant among English speakers and Spanish speakers.Conclusions and relevanceThe patient-facing PREPARE program and an easy-to-read advance directive, without clinician-level or system-level interventions, increased documentation of advance care planning and patient-reported engagement, with statistically higher gains for PREPARE vs advance directive alone. 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-speaking and Spanish-speaking populations.Trial registrationClinicalTrials.gov identifiers: NCT01990235 and NCT02072941.

Project description:ImportancePrimary care is a key setting for advance care planning (ACP).ObjectiveTo test the effects of a multicomponent primary care-based ACP intervention (SHARING Choices) on documented end-of-life preferences and potentially burdensome care at end of life.Design, setting, and participantsThis pragmatic cluster randomized clinical trial in primary care practices from 2 health systems was conducted between March 2021 and April 2022. Adults 65 years and older with a scheduled in-person or telehealth visit with clinicians from participating practices were eligible for inclusion.InterventionsThe treatment protocol encompassed an introductory letter from the clinic, access to a designated facilitator trained in ACP, a person-family agenda-setting checklist, shared access to the patient portal, a mailed advance directive, and print education. The control protocol encompassed usual care.Main outcomes and measuresPrimary outcomes included (1) new electronic health record-documented end-of-life preferences (advance directive or medical orders for life-sustaining treatment) at 12 months among those without documentation at baseline and (2) receipt of potentially burdensome care within 6 months of death among a subsample of Maryland residents with serious illness who died within 18 months of study entry from health information exchange data.ResultsThere were 19 practices in the intervention arm and 32 practices in the control arm. The study included 22 949 patients in the intervention group (13 575 women [59.2%]; mean [SD] age, 73.9 [7.2] years; 1674 [7.3%] with diagnosed dementia) and 41 966 in the control group (25 057 women [59.7%]; mean [SD] age, 74.0 [7.1] years; 3223 [7.9%] with diagnosed dementia). A total of 17 907 patients (27.6%) were Black, 1373 (2.1%) were Hispanic, 40 345 (62.2%) were White, and 5290 (8.2%) were another race (including American Indian or Alaska Native, Asian, and Native Hawaiian or Other Pacific Islander, and missing race). Grant-funded facilitators initiated 17 931 outreach attempts by phone (13 963 [77.9%]) and through the patient portal (3968 [22.1%]) to patients from intervention practices, and 1181 engaged in facilitator-led ACP conversations. New end-of-life preferences were documented for 2190 of 18 314 patients in the intervention arm (12.0%) and 2130 of 32 321 in the control arm (6.6%). This treatment effect was significant for the overall cohort (adjusted odds ratio, 2.15; 95% CI, 2.02-2.30) and present but attenuated for Black patients, those 75 years and older, and those diagnosed dementia. Among 1498 Maryland resident decedents, potentially burdensome care was higher in the intervention group (150 of 521 [28.8%] vs 204 of 977 [20.9%]; adjusted odds ratio, 1.40; 95% CI, 1.08-1.81).Conclusions and relevanceIn this pragmatic cluster randomized clinical trial, the SHARING Choices intervention increased new documentation of end-of-life preferences but also increased potentially burdensome care at end of life. Mixed findings underscore the importance of comprehensive support for those with serious illness and prioritizing patient-relevant outcomes in ACP interventional research.Trial registrationClinicalTrials.gov Identifier: NCT04819191.

Dataset Information

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

Context

Objectives

Methods

Results

Conclusion

Publications

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

Similar Datasets

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