Of all the hospice patients in the United States, only 14% of enrollees are people of color (The National Academies of Sciences, Engineering, and Medicine). While communities of color and low-income communities faced the brunt of COVID-19, they also face a myriad of hurdles when navigating and accessing end-of-life care.
Hospice care provides professional caregiving and the coordination of care for people who have chosen to discontinue disease-fighting treatments (Mayo Clinic). Having access to hospice care, especially that which meets the patient’s cultural, physical, and social needs, can be all the difference between a painful versus a dignified death. Unfortunately, humane hospice care is often inaccessible to low-income and BIPOC patients (The National Academies of Sciences, Engineering, and Medicine).
TAKE ACTION
• Advocate for hospice care using the advocacy resources provided by the National Hospice and Palliative Care Organization.
• Take action with the Hospice Action Network.
• Read Atul Gawande’s Being Mortal to learn about the unnecessary suffering in America’s hospitals, hospice, and nursing home systems.
In the United States, two main public systems are responsible for funding hospice care: Medicare and Medicaid. Medicare is a government insurance program that serves people over 65 and younger individuals with disabilities. Two million Medicare beneficiaries die yearly, representing roughly 80% of deaths in the U.S. (Kaiser Family Foundation).
Meanwhile, Medicaid provides government insurance to low-income people regardless of age (U.S. Department of Health & Human Services). Approximately 70,588,000 individuals were enrolled in the Medicaid program in 2020, and 44 million beneficiaries enrolled in Medicare, making these systems some of the largest payers for hospice services (Medicaid, AARP).
But when public hospice care is underfunded, it disproportionately impacts BIPOC communities, which are more likely to face greater disparities in end-of-life care (Journal of Palliative Medicine). That’s why some states’ stringent laws on eligibility are problematic. In Texas and Kentucky, only those with a life expectancy of six months or less are eligible for hospice care, and in New York, hospice patients only will be admitted if they have a life expectancy of one year (U.S. News). Other states, like Oklahoma and Louisiana, have completely excluded hospice coverage from their plans (Oklahoma Human Services, 4WWL).
Medicaid also tends to be underfunded in facilities where Black patients are enrolled (JAMA Health Forum). Studies show higher rates of disenrollment in hospice programs and more concerns about the quality of care and communication among Black patients (Journal of Palliative Medicine). Other communities of color also face barriers when navigating end-of-life care. Over 11 million undocumented immigrants are not covered by the Medicare Hospice Benefit, and one in three hospice programs refuses to treat this population (JAMA Internal Medicine). This leaves undocumented people reliant on the exorbitant costs of emergency services which can drive up end-of-life care expenses. They are more likely to have fewer private insurance options due to their nationality status (JAMA Health Forum).
Hospice and palliative care are inaccessible to Native people. Today, there are only 14 tribal nursing homes still in operation that allow visitors and cultural practices such as greeting the sun every morning, a Navajo tradition, in end-of-life care (Indian Health Services). But for Native communities to provide hospice services under Medicaid, tribal health organizations have to meet a great number of logistical and bureaucratic requirements, which can serve as a deterrent.
When tribal health organizations are unable to meet these requirements, it leaves Native patients reliant on private or outside hospice programs that often are culturally insensitive to tribal end-of-life practices (JAMA Health Forum). Medicare and Medicaid need to make hospice certification accessible for such facilities. If the certification process was streamlined for Native-run hospice care organizations, it would allow these clinics to incorporate tribal practices into the fold of their work.
Hospice coverage under Medicare and Medicaid is systematically flawed and requires policy-level changes. If these programs made a concentrated effort to increase enrollment, not only would Medicare save $6,430 for each patient enrolled in hospice care, but the quality of life of patients would increase (Indian Journal of Palliative Care, National Library of Medicine).
A successful end-of-life healthcare system is one that delivers care at the right time and according to the patient’s preferences. It is a system that values life and quality of life over money and profit. The folks nearing the end of life deserve healthcare. The underfunding of Medicare and Medicaid disproportionately impacts BIPOC communities, leaving them without health insurance, hospice care coverage, and access to culturally-sensitive hospice programs. We need to push for investment in Medicare and Medicaid programs to better support marginalized people until the very end of their lives.
KEY TAKEAWAYS
• Medicare beneficiaries represent 80% of deaths in the U.S., underscoring the need to expand hospice coverage.
• Most low-income populations are excluded from hospice care under Medicaid and Medicare coverage.
• The underfunding of Medicaid disproportionately impacts BIPOC communities leaving them without health insurance, hospice care coverage, and access to culturally sensitive hospice programs.
*This piece was originally published on 2/24/21. It was updated and edited by The ARD on 7/14/23.
