Ethnic Differences in Advance Directive Completion and Care Preferences: What Has Changed in a Decade?

Abstract

Studies have documented ethnic differences in advance directive (AD) completion, with lower rates in minority groups. Of those with ADs, blacks are more likely than whites to prefer aggressive care, but little is known about how these differences in preferences have changed over time in ethnic groups. This nationally representative study aimed to investigate whether these differences in AD development persisted after adjusting for important confounding variables. Year of death was analyzed to see how AD completion changed over time within ethnic groups, and for those with an AD, the association between these factors and opting for aggressive care was investigated. Data from the 2000 to 2012 Health and Retirement Study (HRS) exit interviews from 7,177 decedents were used. Analyses included logistic regression to determine the relationship between ethnicity and AD completion and preferences for aggressive care and how it changed over time in ethnic groups. Forty-six percent of decedents had completed an AD (whites 51.7%, Hispanics 18.0%, blacks 15.0%). Of blacks completing an AD, 23.8% elected prolonged care, compared with 13.3% of Hispanics and 3.3% of whites. Logistic regression revealed that blacks 75% lower odds of completing an AD and Hispanics had 70% lower odds. Model covariates had a small influence on ethnic differences, although in examining the change in AD completion over time, the odds of having an AD increased with each subsequent death year for blacks and whites but not Hispanics. Additional research is needed to investigate the effect of cultural differences in AD completion rates of ethnic minority groups to ensure that preferences are honored in the clinical setting.

Correlates of advance directive treatment preferences among community‐dwelling older people with chronic diseases

“…The utilisation rates vary by healthcare context (Glaudemans et al, ), with the completion of ADs ranging from 26.3% of the general adult population aged 18 years or older in the United States (Rao, Anderson, Lin, & Laux, ) to 71% among deceased American adults (Enguidanos & Ailshire, ). Racial and ethnic disparities are also concerning; the awareness and utilisation of ADs are particularly lacking in Hispanics, African Americans and immigrant minorities, such as Korean Americans, who retain the cultural influence of their native country (Dobbs, Park, Jang, & Meng, ; Portanova, Ailshire, Perez, Rahman, & Enguidanos, ). Therefore, additional information from East Asian countries is likely to aid in developing and delivering culturally sensitive palliative and supportive care in a timely manner.…”

"We Take Care of Patients, but We Don't Advocate for Them": Advance Care Planning in Prison or Jail

“…A previous study noted that effective ACP was contingent on psychosocial support but further research is needed to understand inmates’ unique psychosocial needs during ACP. Future research should also explore whether knowledge of historical instances of unethical treatment of prisoners could affect decision‐making and the extent to which provider distrust, a barrier to ACP found in ethnic minorities and homeless people, is a challenge in prisons and jails. Because participants identified the need to address policies that limit ACP, the development of a guide that describes exemplary correctional ACP policies could benefit all systems.…”

Shortcomings of Research Regarding Long-term Acute Care Hospitals and Skilled Nursing Facilities—Reply

“…As such, the most recent data shows that LTACs still account for over 130 000 annual admissions and $5.3 billion in annual Medicare spending, which is 18% of the spending on SNFs. 4 Furthermore, the modest decline in LTAC use among fee-for-service beneficiaries may also reflect increasing enrollment in Medicare Advantage. Release of Medicare Advantage data would greatly strengthen our understanding of postacute care.…”

“…Of interest is that these conversations were initiated in the physician's office. Various studies [2][3][4] have noted that the setting in which this important discussion occurs may affect the outcome. For example, Bern-Klug and Byram 2 noted that a higher percentage of individuals had discussed their end-of-life wishes with a lawyer in comparison to a physician.…”

“…3 In African Americans, distrust of the health care system may influence choices about end-of-life care. 4 In addition, several studies have noted that ethnic minorities prefer to make end-of-life choices as a whole family whereas white patients generally accept an individualistic decision-making style. 4 These studies show that conversations regarding advance directives can be most beneficial when personalized according to the patient's needs and background.…”