Headline

Medicare beneficiaries with dementia, especially Black and Hispanic patients, often receive poor quality end-of-life care.

Context

End-of-life care is critically important for people living with dementia, but some research indicates there may be racial and ethnic disparities in hospice use and end-of-life hospitalizations. This cohort study reviews cost and utilization patterns of end-of-life hospice care, emergency department (ED) visits, and hospitalizations among Medicare decedents with dementia by race and ethnicity. It also analyzes ethnic and racial differences in patient instructions related to end-of-life treatment.

Findings

Black and Hispanic decedents with dementia used less hospice care but more ED and inpatient services and had around 60 percent higher Medicare inpatient costs at the end of life when compared with white decedents. As compared with white individuals, more Black and Hispanic individuals that used hospice were admitted to the hospital before dying. Advanced care planning occurred in only 1 of 5 Black and Hispanic patients, which is a lower proportion than for white patients. These disparities can be due to several reasons, including inequitable access to hospice care, differences in cultural and religious or spiritual values, and mistrust of the health care system due to racism.

Takeaways

Policymakers and health care providers should explore strategies to improve quality of care and reduce racial disparities for patients with dementia at the end of life. Examples include policies to expand hospice care access for people with dementia and value-based approaches to incentivize providers to deliver effective hospice care delivery and lessen burdensome end-of-life care transitions.