Advance Care Planning, Palliative Care, and End-of-life Care Interventions for Racial and Ethnic Underrepresented Groups: A Systematic Review

Jones, Tessa; Luth, Elizabeth A; Lin, Shih‐Yin; Brody, Abraham A.

doi:10.1016/j.jpainsymman.2021.04.025

Cited by 62 publications

(41 citation statements)

References 45 publications

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“…Multiple patient, family, provider, and contextual reasons contribute to these differences and more research is badly needed to foster better understanding of why these differences persist and how to address them . 26 Approaches to enhancing routine goals of care documentation for all eligible patients, particularly among ethnic and racial minorities, is an important point of focus for future implementation programming. Relatedly, only a small portion of eligible patients (2.9%) had a goals of care conversation documented during the pilot period.…”

Section: Discussionmentioning

confidence: 99%

Goals of Care Documentation: Insights from A Pilot Implementation Study

Haverfield

García

Giannitrapani

et al. 2022

Journal of Pain and Symptom Management

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Section: Discussionmentioning

confidence: 99%

Goals of Care Documentation: Insights from A Pilot Implementation Study

Haverfield

García

Giannitrapani

et al. 2022

Journal of Pain and Symptom Management

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“…However, much work remains to address the persistent inequities in access and outcomes in end-of-life care for groups typically excluded from research, such as American Indians. 40 While recruiting diverse samples can be challenging, researchers should consider targeting geographical locations with higher populations of underrepresented racial and ethnic groups and collaborate with them to optimize recruitment. Collectively, our findings support the persistent need to provide more equitable end-of-life research for PLWD.…”

Section: Discussionmentioning

confidence: 99%

Hospice interventions for persons living with dementia, family members and clinicians: A systematic review

Lassell

Moreines

Bhatti

et al. 2022

J American Geriatrics Society

Self Cite

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Background Hospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies. Methods A systematic review was conducted using a comprehensive search of five databases through March 2021 and follow‐up hand searches. Included studies were peer‐reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre‐determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26‐item Consolidated Standards of Reporting Trials (CONSORT) Checklist. Results The search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add‐on services, and “other” delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early‐stage research with clinical education and training strategies showing deliberate progression towards real‐world efficacy testing. Implications Hospice interventions for PLWD are sparse and in early‐phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.

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“…Efforts to increase ACP and the completion of ADs have included clinical practice guidelines, expert statements, and comprehensive reports documenting the problems with, and need to improve, ACP and end-of-life care in the USA [10,[20][21][22][23][24][25][26]. There has been considerable research examining various ACP interventions, ranging from educational activities to multimedia decision aids to one-on-one counseling strategies [27,28]. Reviews of these research interventions have found heterogeneity of study design, outcomes, and results, which has fueled recent controversy and discourse in the literature questioning the value of ACP itself [29][30][31].…”

Section: Background and Rationale {6a}mentioning

confidence: 99%

Comparing two advance care planning conversation activities to motivate advance directive completion in underserved communities across the USA: The Project Talk Trial study protocol for a cluster, randomized controlled trial

Scoy

Levi

Bramble³

et al. 2022

Trials

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Background Advance care planning (ACP) is a process involving conversations between patients, loved ones, and healthcare providers that consider patient preferences for the types of medical therapies received at the end of life. Underserved populations, including Black, Hispanic, rural, and low-income communities are less likely to engage in ACP than other communities, a health inequity that results in lower-quality care and reduced hospice utilization. The purpose of this trial is to compare efficacy of two interventions intended to motivate ACP (particularly advance directive completion) for those living in underserved communities. Methods This 3-armed cluster, randomized controlled mixed methods design is being conducted in 75 community venues in underserved communities across the USA. The goal of the trial is to compare the efficacy of two interventions at motivating ACP. Arm 1 uses an end-of-life conversation game (Hello); Arm 2 uses a nationally utilized workshop format for ACP conversations (The Conversation Project); and Arm 3 uses an attention control game (TableTopics). Events are held in partnership with 75 local community-based host organizations and will involve 1500 participants (n=20 per event). The primary outcome is completion of a visually verified advance directive at 6 months post-event. Primary analyses compare efficacy of each intervention to each other and the control arm. Secondary mixed methods outcomes include (a) other ACP behaviors and engagement; (b) communication quality; (c) impact of sociocultural environment on ACP (via qualitative interviews); and (d) implementation and sustainability. Subgroup analyses examine outcomes for Black, Hispanic, and rural groups in particular. Discussion This trial will add to the evidence base behind various conversational ACP interventions, examine potential mechanisms of action for such interventions, and provide qualitative data to better understand the sociocultural environment of how community-based ACP interventions are experienced by underserved populations. Results will also provide important data for future researchers to learn whether visual verification of advance directives is necessary or whether reliance on self-reported outcomes is of comparable value. Data from this study will inform ways to effectively motivate underserved communities to participate in advance care planning. Trial registration ClinicalTrials.gov NCT04612738. Registered on October 12, 2020. All information from the WHO Trial Registration Data Set can be found within the protocol.

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Advance Care Planning, Palliative Care, and End-of-life Care Interventions for Racial and Ethnic Underrepresented Groups: A Systematic Review

Cited by 62 publications

References 45 publications

Goals of Care Documentation: Insights from A Pilot Implementation Study

Goals of Care Documentation: Insights from A Pilot Implementation Study

Hospice interventions for persons living with dementia, family members and clinicians: A systematic review

Comparing two advance care planning conversation activities to motivate advance directive completion in underserved communities across the USA: The Project Talk Trial study protocol for a cluster, randomized controlled trial

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