It's What They Would Have Wanted... Or Is It?: An Intersectional Exploration of End-of-Life Care Quality Among US Adults

TitleIt's What They Would Have Wanted... Or Is It?: An Intersectional Exploration of End-of-Life Care Quality Among US Adults
Publication TypeThesis
Year of Publication2024
AuthorsKunkel, MRuth Corpo
Academic DepartmentDepartment of Sociology and Gerontology
DegreeDoctor of Philosophy
Number of Pages165
UniversityMiami University
CityOxford, Ohio
Keywordscumulative advantage disadvantage, death and dying, healthcare experiences, intersectionality theory, preferences, Quality of care

Quality end-of-life care necessitates that patient preferences be known and honored by family and health care providers, as well as that care is both accessible and affordable. However, patient preferences are not always assessed, nor is the quality and cost of end-of-life care consistent throughout the United States. For individuals with multiple marginalized identities, achieving high quality end-of-life care is even more challenging, as compounding issues like systemic discrimination on the basis of race/ethnicity and gender are prevalent. The intersectional impact of race/ethnicity and gender on end-of-life care quality is largely understudied. To address this gap, I studied a sample of White, Black, and Hispanic US decedents (N=1,410; representing a weighted sample of nearly six million US adults) with data from the Health and Retirement Study core survey, leave behind questionnaire, and exit survey. Using binary logistic regression analyses, I explored how goal-concordance and satisfaction with end-of-life care are impacted by end-of-life care circumstances and aspects of power and privilege. Race/ethnicity and gender were used as moderating variables. Significant end-of-life care circumstances (i.e., discussing end-of-life care options, receiving home care, and longer length of hospice enrollment) reveal the importance of further integrating person-centered care practices into end-of-life care, educating patients on end-of-life care options, and addressing barriers to hospice enrollment for racial/ethnic minority populations. Several aspects of power and privilege were associated with greater quality of care, including not being eligible for Medicaid and absence of depression, which highlight policy and practice areas in need of reform. Further, race/ethnicity and gender were found to moderate the relationships between adverse childhood experiences and goal-concordant care, and perceived discrimination and satisfaction. These findings may help older adults, care partners, health care and end-of-life care practitioners understand and evaluate end-of-life care quality. Research implications are also discussed, with a particular focus on better understanding end-of-life care disparities among multiply marginalized adults in future research.

Citation Key13827