Racial and ethnic differences in end-of-life care in the United States: Evidence from the Health and Retirement Study (HRS)

Orlović, Martina; Smith, Katharine; Mossialos, Elías

doi:10.1016/j.ssmph.2018.100331

Cited by 107 publications

(75 citation statements)

References 34 publications

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“… 10 Although findings from the USA have suggested that these strategies have had limited impact in the uptake of palliative care services among migrant communities. 11 Other recent initiatives have recommended the need to gather more on the experiences and needs of population groups that access less palliative care. 9…”

Section: Introductionmentioning

confidence: 99%

Experience and perspectives on palliative or end-of-life care of Chinese people and their families as immigrants to high-income countries: a systematic review and thematic synthesis

Kwok¹,

Low

Devakumar³

et al. 2020

BMJ Glob Health

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BackgroundA sizeable cohort of Chinese migrants in high-income non-Asian countries is reaching old age and many will develop life-limiting illnesses. They may benefit from palliative care, which is integrated into universal health coverage in many of these countries, but the uptake of this care among migrant communities remains low. Cultural differences between the Chinese and the host community, and poor language skills may be barriers to access, yet understanding the reasons hindering uptake are obscure.AimsTo understand the cultural perspective of how first generation Chinese migrants and their families perceive the provision of palliative care, to identify what exists which may limit their access in high-income non-Asian countries.DesignA systematic review and three-stage thematic synthesis of qualitative studies. Citations and full texts were reviewed against predefined inclusion criteria. All included studies were appraised for quality.Data sourceMEDLINE, EMBASE, PsycINFO, CINAHL and PubMed were searched to July 2019.ResultsSeven qualitative studies were identified (from USA, UK, Canada and Australia). Across the studies analytical themes that impacted on the use of palliative care services were identified: (1) migrants’ intrinsic perceptions of cultural practices, (2) their expectations of and preparation for care at the end of life, (3) perspectives and influences of family and (4) knowledge and communication with palliative care providers in the host country. Key elements found that challenge access to palliative care services in the host countries were: Chinese culture is rooted in the core values of the family as opposed to the individual; migrants’ limited experience in their place of origin in accessing healthcare; and practical issues including a lack of language skills of their host country.ConclusionsPalliative care services do not always match the needs of Chinese migrants in non-Asian high-income countries. Engagement and education on multiethnic cultural awareness in both the host non-migrant and the migrant communities is needed.

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Section: Introductionmentioning

confidence: 99%

Experience and perspectives on palliative or end-of-life care of Chinese people and their families as immigrants to high-income countries: a systematic review and thematic synthesis

Kwok¹,

Low

Devakumar³

et al. 2020

BMJ Glob Health

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“…( 24 ) Some of these findings may reflect cultural differences in preferences for end of life as well as potential socioeconomic or cultural barriers such as the cost of hospice and access to timely advanced care planning. ( 40,41 ) Although it is reassuring that the rates of hospice adoption are increasing in Black patients, the rates still lag behind those of White patients, and further attention is necessary to ensure that rates equalize.…”

Section: Discussionmentioning

confidence: 99%

National Trends in Location of Death in Patients With End‐Stage Liver Disease

et al. 2021

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Despite improvement in the care of patients with end‐stage liver disease (ESLD), mortality is rising. In the United States, patients are increasingly choosing to die at hospice and home, but data in patients with ESLD are lacking. Therefore, this study aimed to describe the trends in location of death in patients with ESLD. We conducted a retrospective cross‐sectional analysis using the Centers for Disease Control and Prevention Wide‐Ranging OnLine Data for Epidemiologic Research from 2003 to 2018. Death location was categorized as hospice, home, inpatient facility, nursing home, or other. Comparisons were made between sex, age, ethnicity, race, region, and other causes of death. Comparisons were also made between rates of change (calculated as annual percent change), proportion of deaths in 2018, and multivariable logistic regression. A total of 535,261 deaths were attributed to ESLD—most were male, non‐Hispanic, and White. The proportion of deaths at hospice and home increased during the study period from 0.2% to 10.6% and 20.3% to 25.7%, respectively. Whites had the highest proportion of deaths in hospice and home. In multivariable analysis, elderly patients were more likely to die in hospice or home (odds ratio [OR], 1.20; 95% confidence interval [CI], 1.07‐1.35), whereas Black patients were less likely (OR, 0.58; 95% CI, 0.46‐0.73). Compared with other causes of death, ESLD had the second highest proportion of deaths in hospice but lagged behind non–hepatocellular carcinoma malignancy. Deaths in patients with ESLD are increasingly common at hospice and home overall, and although the rates have been increasing among Black patients, they are still less likely to die at hospice or home. Efforts to improve this disparity, promote end‐of‐life care planning, and enhance access to death at hospice and home are needed.

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“…One study found that Black and Hispanic workers were not able to take time off from work to take care of their family (26% and 23%, respectively; Horowitz et al, 2017). In addition, racial and ethnic minority individuals are less likely to be involved in end-of-life planning and more likely to die in hospitals as opposed to at home (Orlovic et al, 2019). Furthermore, ethnic minority individuals with low incomes reported using hospice care services less (Hughes & Vernon, 2019), which might result in additional physical, psychological, and financial burdens to the caregivers (Born et al, 2004).…”

Section: Discussionmentioning

confidence: 99%

Women’s Experiences of Managing Work and End-of-Life Care: Challenges, Rewards and Recommendations for Vocational Psychologists

O’Brien

Yang

Jankauskaite

2020

Journal of Career Assessment

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End-of-life care is a form of unpaid care work that is primarily the responsibility of women and can affect their career development, employment, finances, and vocational success. This paper provides a review of the literature on the career and economic effects of providing unpaid end-of-life care for women caregivers. Illustrative reflections from women caregivers highlight challenging and positive aspects of providing end-of-life care. Challenges identified by the women caregivers included managing conflicting demands among work, home and caregiving as well as experiencing emotional strain, financial burden and economic instability. In addition, work schedules had to be altered and career trajectories were interrupted. Interestingly, caregivers reported receiving support from their employers and co-workers and few work-related benefits were used. Despite the many challenges in managing work and end-of-life care, many participants felt positively about their ability to provide a caring environment for a loved one at the time of their death. Recommendations for individual, familial, workplace, and societal changes related to unpaid end-of-life care will be provided.

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Racial and ethnic differences in end-of-life care in the United States: Evidence from the Health and Retirement Study (HRS)

Cited by 107 publications

References 34 publications

Experience and perspectives on palliative or end-of-life care of Chinese people and their families as immigrants to high-income countries: a systematic review and thematic synthesis

Experience and perspectives on palliative or end-of-life care of Chinese people and their families as immigrants to high-income countries: a systematic review and thematic synthesis

National Trends in Location of Death in Patients With End‐Stage Liver Disease

Women’s Experiences of Managing Work and End-of-Life Care: Challenges, Rewards and Recommendations for Vocational Psychologists

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