More Difference by Race: Disparity in Hospice Use, ED Visits and Hospitalizations Among Medicare Beneficiaries With Dementia

Study after study has found major differences between the healthcare services received by Black and Hispanic patients and the services received by White patients.

Findings reported today in JAMA Network Open show that the pattern extends to people with dementia in the final months of life.

Meanwhile, results of an unrelated study reported in the June issue of Health Affairs showed that hospice enrollment among people living with dementia was associated with a higher quality end-of-life care compared with not being enrolled in hospice.

The study published in JAMA Network Open included about 5,000 Medicare beneficiaries with a dementia diagnosis, according to the claims data. The study focused on people’s final 180 days of life.

Lead author Pei-Jung Lin, Ph.D., M.S., an associate professor at Tufts Medical Center in Boston and a researcher at the medical center’s Center for the Evaluation of Value and Risk in Health, and her colleagues found that Black (309 of 809, or 38.2%) and Hispanic patients (153 of 357, or 42.9%) were less likely to use hospice services than White beneficiaries (1967 of 3892, or 50.5%). They also found that Black and Hispanic beneficiaries were more likely to have had an emergency department visit or an inpatient admission than their White counterparts. The differences in inpatient admissions resulted in a 60% difference in expenditures on inpatient care for Black ($23,279) and Hispanic ($23,471) beneficiaries compared with White beneficiaries ($14,609).

Lin and her co-researchers also looked at differences in advanced planning and the expressed wishes for healthcare. They found that the Black (20.7%) and Hispanic (21.4%) beneficiaries with dementia were far less likely to have completed advanced care planning than the White beneficiaries (57.1%) were. Of those who had advanced care plans, they found a larger proportion of Black (20.8%) and Hispanic (18.5%) beneficiaries indicated that they wanted all care possible to prolong life than did White beneficiaries (39%).

The reasons for these differences in planning and preferences were beyond the scope of this study, but the researchers referenced other research documenting mistrust of the U.S. healthcare system that is associated with “medical racism” and healthcare inequalities, and that the mistrust “may lead more non-White patients to perceive hospice care as ‘giving up’ and motivate them to request more aggressive, life-sustaining interventions.”

Other studies have examined the use of hospice services among people with dementia. Lin and her colleagues said their study had the advantage of including a broader group of patients — those living in the community as well as the nursing home population that other studies have focused on.

Krista Harrison, Ph.D., and her colleagues who conducted the study published in Health Affairs also said their study filled a research gap by including patients living outside nursing homes. Hospice care and its payment was originally designed for people dying of cancer but Harrison, an associate professor at University of California, San Francisco, and co-authors notedalmost half of older adults receiving hospice care have dementia.

Their study was based on assessments of the quality of care during the last month of life by proxies (loved ones and caregivers). Just under half (951 of 2,059) of the patients in the study had dementia. The takeaway finding was that the proxies of patients with dementia who were enrolled in hospice rated the quality of the care of the patients higher than proxies of the patients with dementia who were not enrolled in hospice. Their analysis also suggests that care improves as people spend more time enrolled in hospice.

To qualify for the Medicare hospice benefit, two physicians must attest that the patient is terminally ill with a prognosis of six months or less. Prognostic challenges in dementia make certifying eligibility for this benefit difficult, note Harrison and her colleagues. Meanwhile, CMS has implemented policies designed to curb long-term hospice enrollment due to concerns about for-profit hospices and private equity funding, resulting in dementia patients being disproportionately discharged alive from hospice, they said in their Health Affairs article.

Lin and her co-authors said in JAMA Network Open that their research shows that the timing of hospital enrollment is often suboptimal. One in 3 beneficiaries with dementia entered hospice very close to the end of life (i.e., within 7 days before death), a higher proportion than the general Medicare population.

Additionally, some dementia beneficiaries in hospice were subsequently admitted to the ED or hospital before death, especially Black and Hispanic beneficiaries, they found.

“Some hospitalizations are necessary and expected as part of the natural course of treatment,” wrote Lin and her colleagues, whereas others may be considered low value at the end of life.”

They said that alternative payment models, such as bundled payments for episodes of care, are one way to counteract hospitalizations that are expensive and don’t improve the quality of life of the patients with dementia who are enrolled in hospice.