Facilitators and Barriers for Advance Care Planning Among Ethnic and Racial Minorities in the U.S.: A Systematic Review of the Current Literature

Hong, Michin; Yi, Eun-Hye; Johnson, Kimberly J.; Adamek, Margaret E.

doi:10.1007/s10903-017-0670-9

Cited by 129 publications

(158 citation statements)

References 40 publications

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“…We also found independent relationships between ACP knowledge and other sociodemographic factors, including Spanish language and nonwhite race, similar to other studies . Prior studies, however, did not assess health literacy, preferred language, finances, or social support.…”

Section: Discussionsupporting

confidence: 88%

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

Nouri

Barnes

Volow

et al. 2019

J American Geriatrics Society

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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

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Section: Discussionsupporting

confidence: 88%

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

Nouri

Barnes

Volow

et al. 2019

J American Geriatrics Society

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“…30 Familycentered decision making was also an important factor in the perceived value of ACP among African American, Latino, and Asian ethnic groups. 28,30,32,55,72,75 Family-centered decision making could affirm relationships but was also challenging. 72 The concept of filial piety (duty to one's family) may have a dual meaning, emphasizing both the need to preserve life but also to ensure patient wishes and comfort.…”

Section: Perceived Value Of Acp Discussionmentioning

confidence: 99%

“…These reviews were heterogeneous, including a range of health conditions, cultural groups, and populations. 22,26,28,29,33,34,39,44,51,53,54,56,60,62,64,66,68,73,75 In the context of dementia, ascertaining the views of people with dementia rather than reliance on proxies should be of primary concern. 48 This meant that health care professionals would need more training in ACP processes and prognostic implications of dementia to be able to confidently discuss with people with dementia and their carers.…”

Section: Recommendations For Practicementioning

confidence: 99%

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

Hall

Rowland

Grande

2019

Journal of Pain and Symptom Management

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Context. The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. Objectives. The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. Methods. This is a systematic review of reviews. Results. We identified 55 literature reviews published between 2007 and 2018. ACP discussions were facilitated by a diverse range of formats and tools, all of which were acceptable to patients and carers. Patients and carers preferred health professionals to initiate discussions, with the relationships they had with the professionals being particularly important. There were mixed feelings about the best timing, with many people preferring to defer discussions until they perceived them to be clinically relevant. ACP was felt to bring benefits including a greater sense of peace and less worry, but it could also be disruptive and distressing. Patients and carers perceived many benefits from ACP discussions, but these may differ from the dominant narratives about ACP in health policy and may move away from the narratives of RCTs and standardization in research and practice. Conclusion. Researchers and clinicians may need to adjust their approaches as current practices are not aligned enough with patients' and carers' preferences. Future research may need to test implementation strategies of ACP interventions to elucidate how benefits from standardization and flexibility might both be realized.

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“…In our cohort of nurses with their similar education levels and healthcare backgrounds, the persistent racial differences in ACP highlight the importance of better addressing the range of factors limiting ACP participation in minorities because this limited participation may lead to EOL care that is not goal aligned . Reviews have found, particularly for older generations of African Americans, that barriers such as communication problems with physicians and mistrust of the healthcare system were obstacles for ACP engagement; our findings may indicate that such communication issues and mistrust may be deeply embedded because they persist even among former nurses, or there may be other barriers that are as yet unidentified.…”

Section: Discussionmentioning

confidence: 99%

Predictors of Advance Care Planning in Older Women: The Nurses’ Health Study

Kang

Bynum

Zhang

et al. 2018

J American Geriatrics Society

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BACKGROUND/OBJECTIVES Relatively little is known regarding predictors of advance care planning (ACP) in former nurses. We aimed to evaluate potential predictors of ACP documentation and discussion. DESIGN Cross‐sectional study, 2012‐2014. SETTING Nurses’ Health Study. PARTICIPANTS A total of 60,917 community‐dwelling female nurses aged 66 to 93 years living across the United States. MEASUREMENTS Based on self‐reports, participants were categorized as having (1) only ACP documentation, (2) ACP documentation and a recent ACP discussion with a healthcare provider, or (3) neither. Multivariable log‐binomial models were used to estimate prevalence ratios (PRs) and 95% confidence intervals (CIs) of the two separate ACP categories vs those with neither. We evaluated various demographic, health, and social factors. RESULTS The large majority (84%) reported ACP documentation; 35% reported a recent ACP discussion. Demographic factors such as age and race were associated with both ACP categories. In multivariable analyses, race was most strongly associated: compared with whites, African Americans were 27% less likely (PR = 0.73; 95% CI = 0.69‐0.78) to report ACP documentation alone and 41% (PR = 0.59; 95% CI = 0.54‐0.66) less likely to report documentation with discussion. Additionally, health/healthcare‐related characteristics were more strongly associated with ACP documentation plus discussion. Women with functional limitations (PR = 1.15; 95% CI = 1.10‐1.20), women who were recently hospitalized (PR: 1.10; 95% CI = 1.08‐1.12) or women who had seen a physician for health symptoms (PR = 1.43; 95% CI = 1.35‐1.52) or screening (PR = 1.40; 95% CI = 1.32‐1.49) were more likely to report having both ACP documentation and discussion. Social factors showed limited relationships with ACP documentation only; for documentation plus discussion, being widowed and living alone was associated with higher prevalence (PR = 1.21; 95% CI = 1.19‐1.24) and having little emotional support was associated with lower prevalence (PR = 0.84; 95% CI = 0.81‐0.86). CONCLUSIONS Among older nurses, most of whom reported having documented ACP, 35% reported recent patient‐clinician ACP discussions, indicating a major participatory gap in an element critical to ACP effectiveness. Even in nurses, African Americans reported less ACP documentation or discussion. J Am Geriatr Soc 67:292–301, 2019.

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Facilitators and Barriers for Advance Care Planning Among Ethnic and Racial Minorities in the U.S.: A Systematic Review of the Current Literature

Cited by 129 publications

References 40 publications

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

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

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

Predictors of Advance Care Planning in Older Women: The Nurses’ Health Study

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