Health Disparities in Hospice in Nursing Homes (Hospice in NH)

The "Health Disparities in Hospice in Nursing Homes (Hospice in NH)" study will address the gaps in knowledge about racial and ethnic disparities in nursing home hospice use, quality of hospice care, and end-of-life outcomes.

Columbia University School of Nursing is conducting the study in partnership with MJHS Health Systems and the RAND Corporation.

The National Institutes of Health’s National Institute of Nursing Research is funding this project (R01NR020601).

Background:

In the US, approximately 15,600 NHs provide long-term care to more than 1.3 million older adults, about 20% of whom are racial and ethnic minorities, and this proportion has been rising.^1-4 More than 40% of NH residents have advanced illness, which is defined as occurring when one or more conditions become serious enough that general health and functioning decline and treatments begin to lose their impact.^5-7 Prior to the COVID-19 pandemic, 27% of US deaths in adults aged 65 and older occurred in NHs, making EOL care important in this setting.⁸ Racial and ethnic disparities have been found in NHs including in EOL care.^9-12 Hospice, a government benefit program that provides EOL services delivered by an interdisciplinary specialist team, is available in most NHs and may reduce disparities.^1,13 Hospice care decreases resident symptom burden, reduces unnecessary and burdensome care near the EOL, and increases the quality of life for the resident and family.^14-17

Yet, only 33% of those dying in NHs have enrolled in hospice, and 31% of NH residents that enrolled did so in the last week of life.¹⁸ Furthermore, as mortality increased in 2020, in most states the percent of those dying who enrolled in hospice decreased; yet, there is no information about how the pandemic changed the use of hospice by racial and ethnic minority NH residents or if any changes had lasting effects.

Little is known about racial and ethnic disparities in NH hospice enrollment or the quality of the hospice care provided. ^19-23 Concerns about implicit bias and systemic and structural racism resulting in inequitable EOL care in NHs have increased with the pandemic, as NH mortality tragically rose by 32% during 2020, and racial and ethnic minority residents were more affected by COVID-19 than White non-Hispanic residents. ^24-27 Furthermore, as mortality increased in 2020, in most states the percent of those dying who enrolled in hospice decreased; yet, there is no information about how the pandemic changed the use of hospice by racial and ethnic minority NH residents or if any changes had lasting effects.

Study Goals

To address these gaps, we will conduct a mixed-methods (administrative data and qualitative interviews with administrators, hospice care professionals, and caregivers at nursing homes), sequential explanatory study guided by Donabedian’s Quality Framework and the NIMHD Minority Health and Health Disparities Framework.

The results from this study will inform evidence-based policies at the national, state, and nursing home level as well as practice-based initiatives, such as quality management and professional education, which can promote equitable access to hospice and improve the quality of end-of-life care for the diverse Americans living and dying in NHs across the country.

Study Aims:

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.
3. Describe perceived facilitators and barriers that contribute to hospice use and quality of hospice care in racial and ethnic minority NH residents.