Health Disparities in Hospice in Nursing Homes

In the US, more than 15,600 nursing homes (NHs) provide long-term care to more than 1.3 million elderly adults, of whom about 20% are racial and ethnic minorities. About 40% of NH residents have advanced illness, and prior to the pandemic more than 27% of all deaths in those ages 65 years or older occurred in NHs, making high-quality end-of-life (EOL) care critical. Prior research has found racial and ethnic disparities in NH EOL care. Hospice, a government benefit, allows for EOL care to be provided by a specialist interdisciplinary team. Timely hospice enrollment is a best practice and is recommended for NH residents with advanced illness. However, of those dying in NHs only 1/3 enroll in hospice, and 30% of the enrolled residents receive hospice care for less than a week. Concerns about disparities in NHs related to implicit bias, systemic racism, and structural racism increased with the pandemic. During 2020, racial and ethnic minority NH residents were disproportionately affected by COVID-19 as mortality rose by 32%, yet hospice use decreased in most states. There are gaps in knowledge about racial and ethnic disparities in NH hospice enrollment, the quality of hospice care provided, and related EOL outcomes. How the pandemic impacted hospice use and if any related changes were long lasting is also unknown. To address these gaps, we propose a sequential explanatory mixed methods study guided by Donabedian's Structure, Process, and Outcomes Quality Framework and the NIMHD Minority Health and Health Disparities Framework. Our aims are to: 1) Identify racial and ethnic differences in hospice enrollment and the quality of hospice care provided over time, factors that influence these differences, and how COVID-19 changed these differences; 2) Identify racial and ethnic differences in NH EOL outcomes over time, factors that influence these differences including hospice enrollment and the quality of hospice care, and how COVID-19 changed these differences; and 3) Describe perceived facilitators and barriers that contribute to hospice use and quality of hospice care in racial and ethnic minority NH residents. To achieve Aims 1 and 2, we will use administrative and publicly available data from 2015 to 2024, including the Minimum Data Set and Medicare hospice and inpatient claims (n ≈ 8 million) of NH residents who died and a subset of this sample who enrolled in hospice (n ≈ 2 million). We will include all available racial and ethnic categories and comprehensive measures of hospice enrollment, hospice quality of care, and EOL outcomes. To meet Aim 3, we will purposively sample 16 NHs that vary in location, are either high or low users of hospice, and ≥ 30% of residents are racial or ethnic minorities. We will conduct semi-structured interviews with an administrator, hospice care planner, and 2 family caregivers of racial/ethnic minority decedents (i.e., one that used hospice and one that did not) from each NH. Results from this study will inform evidence-based policies at the national, state, and NH level and influence practice-based initiatives that can promote equitable access to high-quality hospice for diverse Americans living and dying in NHs.