More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime, and of those diagnosed who receive intensive end-of-life care – such as mechanical ventilation, intubation, feeding tube initiation and new dialysis – most are from racial and ethnic minority groups, according to a Rutgers study.
Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, the researchers found.
“Dementia appears to have a multiplicative effect,” said Elizabeth Luth, an assistant professor in the Department of Family Medicine and Community Health at Rutgers and lead author of the study published in the Journal of the American Geriatrics Society.
“This difference is not problematic if it reflects patient preferences for intensive services,” said Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication and other barriers to accessing health care.”
To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues from Vanderbilt, Cornell and Harvard universities calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.
In addition to determining 51 percent of Medicare patients die with a dementia diagnosis claim, the researchers made another novel discovery: Race and ethnicity may influence how people with dementia live out their final days.
“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth said.
The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American and Pacific Islanders had 73 percent higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175 percent higher odds of receiving intensive procedures.
Luth said the findings should prompt efforts to improve end-of-life care and outcomes for people with dementia. Medicare reimbursements for physician-led advance care planning conversations could help, she said, as would end-of-life care counseling for all hospitalized patients.
“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth said. “If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”