Racial Disparities in In-hospital Death and Hospice Use Among Nursing Home Residents at the End of Life :

We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research. We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers. Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales. Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.

Nursing home care is currently a two-tiered system. The lower tier consists of facilities housing mainly Medicaid residents and, as a result, has very limited resources. The nearly 15 percent of U.S. nonhospital-based nursing homes that serve predominantly Medicaid residents have fewer nurses, lower occupancy rates, and more health-related deficiencies. They are more likely to be terminated from the Medicaid/Medicare program, are disproportionately located in the poorest counties, and are more likely to serve African-American residents than are other facilities. The public reporting of quality indicators, intended to improve quality through market mechanisms, may result in driving poor homes out of business and will disproportionately affect nonwhite residents living in poor communities. This article recommends a proactive policy stance to mitigate these consequences of quality competition.

Studies using local samples suggest that racial minorities anticipate a greater preference for life-sustaining treatment when faced with a terminal illness. These studies are limited by size, representation, and insufficient exploration of sociocultural covariables. To explore racial and ethnic differences in concerns and preferences for medical treatment at the end of life in a national sample, adjusting for sociocultural covariables. Dual-language (English/Spanish), mixed-mode (telephone/mail) survey. A total of 2,847 of 4,610 eligible community-dwelling Medicare beneficiaries age 65 or older on July 1, 2003 (62% response). Demographics, education, financial strain, health status, social networks, perceptions of health-care access, quality, and the effectiveness of mechanical ventilation (MV), and concerns and preferences for medical care in the event the respondent had a serious illness and less than 1 year to live. Respondents included 85% non-Hispanic whites, 4.6% Hispanics, 6.3% blacks, and 4.2% "other" race/ethnicity. More blacks (18%) and Hispanics (15%) than whites (8%) want to die in the hospital; more blacks (28%) and Hispanics (21.2%) than whites (15%) want life-prolonging drugs that make them feel worse all the time; fewer blacks (49%) and Hispanics (57%) than whites (74%) want potentially life-shortening palliative drugs, and more blacks (24%, 36%) and Hispanics (22%, 29%) than whites (13%, 21%) want MV for life extension of 1 week or 1 month, respectively. In multivariable analyses, sociodemographic variables, preference for specialists, and an overly optimistic belief in the effectiveness of MV explained some of the greater preferences for life-sustaining drugs and mechanical ventilation among non-whites. Black race remained an independent predictor of concern about receiving too much treatment [adjusted OR = 2.0 (1.5-2.7)], preference for dying in a hospital [AOR = 2.3 (1.6-3.2)], receiving life-prolonging drugs [1.9 (1.4-2.6)], MV for 1 week [2.3 (1.6-3.3)] or 1 month's [2.1 (1.6-2.9)] life extension, and a preference not to take potentially life-shortening palliative drugs [0.4 (0.3-0.5)]. Hispanic ethnicity remained an independent predictor of preference for dying in the hospital [2.2 (1.3-4.0)] and against potentially life-shortening palliative drugs [0.5 (0.3-0.7)]. Greater preference for intensive treatment near the end of life among minority elders is not explained fully by confounding sociocultural variables. Still, most Medicare beneficiaries in all race/ethnic groups prefer not to die in the hospital, to receive life-prolonging drugs that make them feel worse all the time, or to receive MV.