Evolving end-of-life care patterns for hepatocellular carcinoma in the United States: A 25-year national analysis of disparities in home and hospice utilization

Background and Aims

Hepatocellular carcinoma (HCC) remains one of the leading causes of cancer-related mortality worldwide and in the United States. In recent decades, there has been a growing emphasis on end-of-life care delivered in home or hospice settings, yet detailed contemporary insights into how these patterns differ by sex, race/ethnicity, region, and urbanization remain sparse. This study aimed to characterize the trends in the proportion of HCC descendants receiving home or hospice care over a 25-year period, using data derived from the CDC WONDER database.

Methods

Data for HCC-related mortality were obtained from the Centers for Disease Control and Prevention’s Wide-ranging Online Data for Epidemiologic Research (CDC WONDER) database by ICD-10 code (C22.0), covering the years from 1999 to 2024. The analysis focused on the proportion of home or hospice deaths relative to the total number of HCC-related deaths. Trends were examined for the overall population as well as stratified by race/ethnicity, sex, census region, and urbanization. Trend analysis was conducted using Joinpoint 5.30 to identify significant changes in the temporal patterns.

Results

The overall proportion of patients with HCC who died at home or in hospice increased steadily over the study period, rising from approximately 40.19% in 1999 to 54.67% in the most recent year, with an overall aggregate proportion around 47.6%. Among the different racial and ethnic groups, Non-Hispanic White decedents showed a notable increase from 44.57% to 58.04%, while Non-Hispanic Black decedents increased from 27.38% to 44.91%, and Hispanic decedents from 39.17% to 51.38%. Both female and male patients experienced rising trends in home or hospice deaths, with females increasing from 41.67% to 54.48% and males from 39.64% to 54.73%. Regional variations were evident, with the South consistently reporting the highest proportions of home or hospice deaths, starting at 42.71% in 1999 and reaching 58.38% in the latest data, while the Northeast exhibited comparatively lower rates. A similar upward trend between 1999 and 2020 was observed in both rural and urban areas, with rural settings increasing from 41.16% to 58.81% and urban settings from 40.04% to 59.86%.

Conclusion

In conclusion, our study highlights both obvious progress and persistent disparities in end-of-life care in HCC patients in the US. Significant disparities do exist between racial/ethnic groupings and geographical areas, despite a significant increase in home/hospice utilization. Multiple interventions which intend to remove barriers to healthcare access, enhance cultural competence palliative care administration, and apply policy reforms to support concurrent palliative and disease-modifying therapies will be necessary to achieve health equity. Ensuring that all patients have fair access to high-quality end-of-life care should be a top priority for physicians, researchers, and policymakers as the prevalence of HCC keeps increasing.