Abstract

Importance  Evidence is limited regarding whether end-of-life care for individuals with dementia varies by race and ethnicity, and whether observed variations can be explained by differences in the physicians providing their care.

Objective  To evaluate end-of-life care among individuals with dementia across racial and ethnic groups, and to investigate whether care variations are explained by differences in treating physicians.

Design, Setting, and Participants  This cohort study used national, population-based claims data from a 20% random sample of Medicare fee-for-service beneficiaries aged 66 years or older with a diagnosis of dementia who died between 2016 and 2019. Data were analyzed from January 2024 to June 2025.

Main Outcomes and Measures  Emergency department, hospital, and intensive care unit use, mechanical ventilation or cardiopulmonary resuscitation, and feeding tube placement in last 30 days of life; death in acute care hospital; hospice use and palliative care counseling in last 180 days of life; and any billed advance care planning before death.

Results  Among 259 945 decedents with dementia (mean [SD] age, 85.8 [8.0] years; 60.4% female), 8.3% were non-Hispanic Black, 4.4% were Hispanic, and 87.3% were non-Hispanic White. Compared with non-Hispanic White decedents, non-Hispanic Black decedents were more likely to receive emergency department (difference, 5.7 percentage points [pp]; 95% CI, 5.0-6.4 pp), hospital (difference, 4.0 pp; 95% CI, 3.3-4.7 pp), intensive care unit (difference, 4.3 pp; 95% CI, 3.7-4.9 pp), mechanical ventilation or cardiopulmonary resuscitation (difference, 3.8 pp; 95% CI, 3.3-4.3 pp), and feeding tube placement (difference, 1.8 pp; 95% CI, 1.5-2.1 pp) care, as well as die in a hospital (difference, 3.5 pp; 95% CI, 2.9-4.1 pp). Non-Hispanic Black decedents were less likely to use hospice (difference, −6.1 pp; 95% CI, −6.8 to −5.4 pp) and more likely to receive palliative care counseling (difference, 3.2 pp; 95% CI, 2.6-3.9 pp) and billed advance care planning (difference, 1.8 pp; 95% CI, 1.2-2.3 pp) than non-Hispanic White decedents. Similar patterns were observed among Hispanic decedents. Variations in end-of-life care remained qualitatively unchanged when comparing decedents treated by the same physician.

Conclusions and Relevance  Findings from this cohort study suggest that non-Hispanic Black and Hispanic decedents with dementia received more intensive end-of-life care despite higher rates of billed advance care planning and palliative care counseling than non-Hispanic White decedents. Observed racial and ethnic variations were not explained by differences in the physicians treating them.

Discussion

This study looked at how older adults with dementia in traditional Medicare were cared for at the end of life, and whether patterns differed for Black, Hispanic, and White patients. Using claims data from nearly 260,000 people who died between 2016 and 2019, the authors measured things like ER visits, hospitalizations, ICU stays, feeding tubes, CPR/ventilation, death in the hospital, hospice use, palliative care consultations, and billed advance care planning. They found that Black and Hispanic decedents with dementia were more likely than White patients to receive intensive hospital-based care in the last 30 days of life and to die in the hospital, and they were less likely to use hospice in the last six months of life. At the same time, Black and Hispanic patients were actually more likely to have billed advance care planning and palliative care counseling documented.

To understand whether “which doctor you see” explains these differences, the researchers compared patients who were cared for by the same primary care physician. The racial and ethnic gaps in intensive end-of-life care and hospice use mostly stayed the same, meaning physician practice style only explained a small part of the disparity. Over the four-year period, differences in the rates of billed advance care planning and palliative care counseling between White and Black/Hispanic patients grew, but disparities in intensive hospital use did not meaningfully shrink.

The authors conclude that structural and social factors such as access to services, timing of dementia diagnosis, cultural values, past experiences with the health system, and systemic inequities are likely driving these patterns, rather than just individual doctors’ preferences or skills.

For hospice teams, this article is a clear reminder that many Black and Hispanic people living with dementia still reach the end of life in the hospital, even when conversations about goals of care and palliative care are happening.

Practical questions to bring back to your agency include: Are we seeing disparities in our own hospice enrollment and lengths of stay for patients with dementia by race or ethnicity? How early are we connecting with families of Black and Hispanic patients before the crisis ED visit, or only once they are already hospitalized? Do our educational materials, community outreach, and marketing speak directly – and respectfully – to diverse communities’ concerns about “giving up,” spiritual beliefs, and mistrust of the system? Are we partnering with hospitalists, ED teams, nursing homes, and primary care practices that care for large numbers of Black and Hispanic dementia patients so that when palliative and advance care planning conversations occur, hospice is presented as a real, trusted option and not an afterthought?

These are the kinds of concrete, agency-level questions this paper invites hospice nurses, administrators, and marketers to wrestle with.

Link to Full Article

Link to article: End of Life Care for Older Adults with Dementia