End-of-life care patterns for cholangiocarcinoma in the United States: A 26-year analysis of home and hospice deaths by demographic, regional, and urbanization factors.

BACKGROUND

End-of-life care in home or hospice settings has increased in the United States, yet contemporary data describing demographic and geographic differences remain limited. Cholangiocarcinoma (CCA) is a rare, aggressive malignancy with poor prognosis, and patterns of place of death for CCA patients are poorly characterized. This study examined long-term trends in home or hospice deaths among CCA decedents, with attention to demographic and regional disparities.

METHODS

CCA data from 1999 to 2024 were obtained from the CDC (Centers for Disease Control) WONDER database using ICD-10 codes C22.1, C24.0, C24.8, and C24.9. The proportion of deaths occurring at home or in hospice was analyzed overall and stratified by sex, ethnicity, census region, and urbanization (available through 2020). Joinpoint regression (version 5.40) assessed temporal trends.

RESULTS

Among 181,776 CCA decedents, 104,208 (57.3%) died at home or in hospice. The proportion increased from 42.0% in 1999 to 69.0% in 2020, then declined to 62.0% in 2024 (Average Annual Percent Change AAPC 1.71%, 95% CI 1.40-1.92). Trends were almost similar by sex with minor variations. Non-Hispanic Black patients had the lowest proportion of home or hospice deaths (47.29%), despite comparable upward trends across ethnic groups. Regional differences were modest, with the South and West showing the highest proportions (59.7%). Urban and rural areas exhibited parallel increases.

CONCLUSIONS

Home or hospice end-of-life care among CCA patients has risen over 25 years, though recent declines and persistent demographic disparities remain. Targeted strategies are required to ensure equitable access to high-quality end-of-life care for underserved populations.