Structural Racism and the Completion of Advance Directives Among a Diverse Population of Older Adults with a History of Homelessness

Overwhelming racial disparities have been revealed during the Coronavirus disease 2019 (COVID-19) pandemic. Black and Brown people have been disproportionately affected and the projected mortality and morbidity devastation are unprecedented. In particular, older adults have been disadvantaged, with lower survival rates and lasting chronic disease impacts. Arguably, racism is a social determinant of these poor outcomes with populations that have long been vulnerable due to health inequities. COVID-19 gave rise to the need for social work researchers to examine advance care planning (ACP) among vulnerable populations, before they experience a health crisis.

The Patient Self-Determination Act of 1990 requires healthcare system,s receiving federal funding, to provide information to patients regarding advance directives. Little is known about how persons living without stable housing engage in such discussions about their preferences for or against withholding and withdrawing life-prolonging interventions, and identifying a healthcare proxy to speak on their behalf. While previous research has documented many people wish to forgo aggressive measures such as cardiopulmonary resuscitation (CPR), ventilator support or other types of therapies, racial and cultural differences exist; and most of the available data have not included persons experiencing homelessness.

To explore preferences for and against the completion of advance directives among an older adult population, data collected during a community-based outreach project were coded and analyzed to better understand structural barriers including perceived racism as a factor among community dwelling diverse older adults.

Design: In-person focus groups and individual survey interviews were conducted with older adult living in senior housing communities.

Procedures: A series of focus groups with 6-10 members in each group, were conducted. Participants were purposefully selected, using “snowball” sampling techniques. Community dwelling older adults utilizing some form of senior care services were approached for participation. Recruitment was extremely successful, and the use of this method was critical in recruiting and retaining older adults of diverse racial and ethnic backgrounds. In addition, one-on-one interviews were used to complement the focus groups and ask survey questions.

Analysis: Qualitative data coded and analyzed using Grounded Theory and Critical Race Theory to explain the difference in outcomes. Quantitative data were analyzed using SPSS. T-test or ANOVA; Crude comparisons of proportion of patients with expressed wishes in each ethnic group were made using chi-square; Multiple logistic regression analysis for potential co-founders; alpha <.05.

Results: (1) Significant differences in health care wishes and how individuals chose to express their wishes were noted. (2) Black and Latino older adults were more likely to choose aggressive interventions and less likely than Whites to utilize written advance directives. (3) Religious beliefs and practices were associated with preferences for and against certain types of medical interventions.

Conclusions: Difference in hospice, palliative and end-of-life care preferences exist. Awareness of differences can assist social workers in understanding structural factors that influence cross group differences. Findings have important implications for social workers and highlight the need for cultural competency when discussing advance care planning options with persons experiencing homelessness and those of diverse populations across racial, ethnic and cultural backgrounds.