Project Summary
Racial disparities in end-of-life (EOL) care continue to persist in nursing home (NH) residents with Alzheimer’s
disease and related dementia (ADRD). Recent studies reported that black NH residents with dementia were
more likely to receive aggressive EOL care, including hospitalizations, ER visits, feeding tubes and aggressive
medication therapy, compared to Whites. ADRD is a progressive, life-limiting syndrome without a curative
treatment. Hence, hospice care is preferable for older adults with ADRD during EOL because it prioritizes
comfort and quality of life by reducing pain and suffering. Medicare is the primary insurer of patients with
ADRD and covers hospice for all with a 6-months or shorter prognosis. As about 90% of older Americans with
ADRD are placed in NHs before death, it is critically important for Medicare policy makers to understand
contemporary characteristics of racial disparities in hospice care in NHs in order to implement efficient policies
to promote health equity. Recently, there raised concerns about fraudulent/inappropriate patient selection
practices that favored long-stay patients, particularly ADRD patients, because patients with longer hospice
stays generated greater profits for hospices. To discourage hospice selection for long-stay patients, Medicare
launched the 2014 Improving Medicare Post-Acute Care Transformation (IMPACT) Act to mandate auditing
targeted hospices with high proportion of patient staying longer than 180 days. It remains unaddressed how
racial disparities change with implementing IMPACT in NH residents with ADRD.
The project’s overall goal is to improve EOL health equity for NH residents with ADRD. The aims for this R01
proposal are to identify the effects of IMPACT on racial disparities in hospice care in NH residents with ADRD,
and to characterize subgroups that are most likely to experience inadequate hospice care. The primary
hypothesis is that racial disparities in EOL care increased persistently after IMPACT was implemented. We will
employ mixed methods to accomplish the following aims (A) and hypotheses (H):
A1. To examine impacts of IMPACT on racial disparities in hospice care in NH residents with ADRD.
A2. To characterize phenotypes of NH residents with ADRD based on multimorbidity who have high risks for
very short or very long hospice care, and compare these phenotypes between Black and White residents.
A3. To obtain perspectives of care providers in NHs about how hospice polices may influence hospice
care referrals among residents with ADRD. An expert panel of clinical advisors will identify barriers to
hospice care referrals, and potential mechanisms through which Medicare policies could reduce them.
This study will evaluate Medicare policy on racial disparities in hospice care among a very vulnerable
population: older adults with ADRD who reside in NHs. Results will also identify subgroups of these individuals
at high risk of inadequate hospice stays. Findings will support clinicians with insight about how interventions to
reduce racial disparities and improve health equity can be targeted to individuals in high-risk groups.
