Disparities and trends in hospice facility deaths among leukemia patients

Abstract Background Patients with advanced or refractory hematologic malignancies experience a distinct disease course when going through the end-of-life. They often experience frequent hospitalizations with impacted quality of life and are more likely to die in acute settings compared with those with solid malignancies. Although there have been increasing efforts to increase palliative care referral and use of hospice services in the United States in patients with leukemia, it remains unclear if they have translated into higher hospice utilization. This study aims to identify the temporal trends and demographic disparities in hospice utilization for the past 20 years in patients with leukemia. Methods We performed a retrospective, population-based analysis using the Centers for Disease Control and Prevention Wide-ranging Online Data for Epidemiologic Research (CDC WONDER) Multiple Cause of Death database. We included deaths from 2005 to 2024 where leukemia was listed as a cause of death, identified by International Classification of Diseases, 10th Revision (ICD-10) codes: C91-C95. Temporal trends in the proportion of hospice facility deaths were assessed using joinpoint regression models, with a pre-specified jump between 2019 and 2020 to account for the potential impact of the COVID-19 pandemic. Annual percent change (APC) and average annual percent change (AAPC) were calculated. Joinpoint analyses were conducted using the Joinpoint Regression Program (version 5.4.0). Urban–rural residence was assessed using the 2013 National Center for Health Statistics (NCHS) Urban–Rural Classification, which is available through 2020. Analyses involving urban–rural status included data from 2005 to 2019 (the pre-COVID period) and joinpoint regression models without a jump model. Logistic regression models were used to examine associations between demographic variables (sex, race, urbanicity, ethnicity) and the likelihood of hospice death, adjusting for year. Statistical analyses were performed using R (version 4.4.0). Data for 2024 is provisional. Results Between 2005 and 2024, the proportion of leukemia-related deaths occurring in hospice facilities rose from 1.96% in 2005 to 10.63% in 2019 (pre-COVID), declined to 8.73% in 2020, and partially rebounded to 9.49% in 2024 (provisional). Joinpoint analysis identified a rapid increase from 2005 to 2008 (APC: 31.8%), followed by a moderate rise from 2008 to 2014 (APC: 13.8%), and slower growth from 2014 to 2024 (APC: 2.2%), with an AAPC of 10.1% (95% CI, 7.7 to 12.5). Females consistently had higher hospice utilization than males, but the difference was not statistically significant (OR 0.54; 95% CI, 0.18 to 1.56). Upward trends were observed in both sexes (AAPC: 9.9% for females, 10.4% for males). Racial disparities persisted throughout the study period. By 2024, hospice deaths were most common among non-Hispanic Whites (NHW) (10%), followed by non-Hispanic Blacks (8.94%) and Hispanics (7.16%), with all groups showing significant upward trends (AAPC: 9.8%, 10.1%, and 9.9%, respectively). Compared to non-Hispanic Whites (reference), the odds of hospice death were significantly lower for non-Hispanic Blacks (OR 0.27, 95% CI 0.09 to 0.78) and Hispanics (OR 0.07, 95% CI 0.03 to 0.21). Urban–rural analyses (2005–2019) revealed persistent disparities. In 2019, hospice deaths were less common in rural areas (7.32%) than in urban areas (11.37%), with rural regions experiencing a higher AAPC (18.8%) than urban areas (12.1%). Urban residence was strongly associated with higher odds of hospice death compared to rural residence (OR 42.23, 95% CI 23.94 to 74.51). Trends showed a decline in hospice facility deaths during the initial COVID-19 pandemic (2020) across nearly all groups, with partial recovery by 2024. Conclusions The proportion of leukemia-related deaths occurring in hospice facilities increased over the past two decades, yet significant disparities persist by sex, race, and urban–rural status. Hospice deaths remain less common among males, racial and ethnic minorities, and rural residents. The COVID-19 pandemic interrupted a steady upward trend in hospice utilization, with only partial recovery observed through 2024. These findings highlight ongoing barriers to equitable end-of-life care and underscore the need for targeted efforts to expand access to hospice services, particularly among historically underserved populations.