Impact of federal policies on disparities at the end of life care among nursing home residents with Alzheimer's diseases or related dementia

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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.