Worsening Racial Disparity for Hospice, but not for Palliative Care: Explanation and Call to Action

Key Message: Despite the growth of hospice availability, the long-standing racial disparity in hospice enrollment continues to increase. We argue that removing the mutual exclusivity (opportunity cost) of the Medicare hospice benefit and providing reimbursement for community-based palliative care are both necessary to transform serious illness care for all.

Abstract:

Background: Several reviews of racial disparities in hospice and palliative care (PC) have been conducted in recent years; the findings have been mixed and the messages have been unclear regarding what action is needed(1–4).

Objectives: 1) To quantify White and Black use of hospice and specialty PC services; 2) to determine if there are disparities in other home-based healthcare services.

Methods: We conducted a review and meta-analysis of federal data and high-quality research studies.

Results: MedPac reports revealed a continuous and worsening record of Black-White disparity in hospice use from 1998 through 2023; most recently, 54.3% enrollment for White vs 39.7% for Black beneficiaries. Our meta-analysis of 23 datasets from 17 hospice studies dating back to 1988 produced an overall odds ratio for Black patients enrolling in hospice of 0.73 (95% CI: 0.67, 0.80). This included numerous studies that adjusted for various person-level and hospice-level variables. In contrast our meta-analysis of 15 carefully selected, multi-site PC studies had an overall OR of 1.06 (0.97, 1.17) indicating no disparity. Our review of studies of other home-based healthcare services found no evidence of disparities, and concurrent hospice care (such as the Medicare Care Choices Model) is associated with reduced racial disparity.

Conclusions: Hospice – but not palliative medicine more broadly, nor home-based services more broadly – creates significant racial disparities in both enrollment and disenrollment. We conclude there is an urgent need for Medicare policy reform to remove opportunity cost for patients by eliminating the forced choice between hospice care and other forms of healthcare and treatment. Simultaneously there is a need for payment mechanisms for community-based PC which is concurrent by design. We attribute mixed findings in prior reviews to the dozens of studies published in recent years that used questionable methods to measure receipt of specialty palliative care services(5).

References: 1. Bazargan M, Bazargan-Hejazi S. Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature. Am J Hosp Palliat Care. 2021;38(6):688-718. doi:10.1177/1049909120966585
2. Heitner R, Rogers M, Chambers B, et al. The Experience of Black Patients With Serious Illness in the United States: A Scoping Review. J Pain Symptom Manage. 2023;66(4):e501-e511. doi:10.1016/j.jpainsymman.2023.07.002
3. Nelson KE, Wright R, Peeler A, Brockie T, Davidson PM. Sociodemographic Disparities in Access to Hospice and Palliative Care: An Integrative Review. Am J Hosp Palliat Med. 2021;38(11):1378-1390. doi:10.1177/1049909120985419
4. Chuang E, Yu S, Georgia A, Nymeyer J, Williams J. A Decade of Studying Drivers of Disparities in End-of-Life Care for Black Americans: Using the NIMHD Framework for Health Disparities Research to Map the Path Ahead. J Pain Symptom Manage. 2022;64(1):e43-e52. doi:10.1016/j.jpainsymman.2022.03.017
5. Cassel JB. What Does “Palliative Care” Represent in Research Using Secondary Data? J Pain Symptom Manage. 2024;68(4):421-428. doi:10.1016/j.jpainsymman.2024.07.011