Kayla Hui Nicole Cardoza Kayla Hui Nicole Cardoza

Advocate for end-of-life care.

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 face the brunt of COVID-19, they also face a myriad of hurdles when navigating and accessing end-of-life care. According to the Centers for Disease Control and Prevention, people of color are up to 2.8 times more likely to die from the virus, underscoring the importance of end-of-life and hospice care for this population (CDC).

Happy Wednesday, and welcome back to the Anti-Racism Daily. With over 500,000 lives lost to COVID-19 in less than a year, along with the compounding impact of natural disasters and economic woes that threaten our wellbeing, end-of-life care should be prioritized and centered for all. However, there are clear disparities in the opportunities granted for ourselves to care for one another. Today, Kayla shares more on what we can do to change that.

This newsletter is a free resource and that's made possible by our paying subscribers. Consider giving $7/month on Patreon. Or you can give one-time on our website, PayPal, or Venmo (@nicoleacardoza). You can also support us by joining our curated digital community. Thank you to all those that support!

Nicole

TAKE ACTION

  • Advocate for hospice care using the advocacy resources provided by the National Hospice and Palliative Care Organization.

  • Encourage your elected officials to address disparities in end-of-life-care in Medicare and Medicaid.

  • Read Atul Gawande’s Being Mortal to learn more about the unnecessary suffering in America’s hospitals, hospice, nursing home systems.

GET EDUCATED

By Kayla Hui (she/her)

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 face the brunt of COVID-19, they also face a myriad of hurdles when navigating and accessing end-of-life care. According to the Centers for Disease Control and Prevention, people of color are up to 2.8 times more likely to die from the virus, underscoring the importance of end-of-life and hospice care for this population (CDC). 

Hospice care is a service that 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 cultural, physical, and social needs of the patient, can be all the difference between a painful versus dignified death. Unfortunately, humane hospice care is often inaccessible to low-income and BIPOC patients (The National Academies of Sciences, Engineering, and Medicine). 

In the United States, there are two main public systems responsible for funding hospice care: Medicare and Medicaid. Medicare is a government insurance program that serves people over sixty-five years of age and younger individuals with disabilities. Two million Medicare beneficiaries die every year representing roughly 80 percent of deaths in the U.S. (Kaiser Family Foundation). Meanwhile, Medicaid provides government insurance to low-income people, no matter their 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 who are more likely to face greater disparities in end-of-life care (Journal of Palliative Medicine). That’s why some state’s 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 excluded hospice coverage from their plans completely (Oklahoma Human Services, 4WWL). 

Medicaid also is likely to be underfunded in facilities where Black patients are enrolled (JAMA Health Forum). Studies show that there are higher rates of disenrollment of 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 eleven 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 their costs for end-of-life care. These people are more likely to have fewer private insurance options due to nationality status (JAMA Health Forum). 

Hospice and palliative care are inaccessible for Native people. Today, there are only fourteen 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 in order 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 not able 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 increase the quality of life of patients, especially those who are vulnerable to COVID-19 (Indian Journal of Palliative Care, National Library of Medicine). 


A successful end-of-life 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 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 percent of deaths in the U.S., underscoring the need to include hospice coverage within the Medicare and Medicaid programs.

  • While some states have made efforts to include hospice care under Medicaid and Medicare coverage, others have excluded it from funding, leaving low-income populations without care to navigate end-of-life.

  • The underfunding of Medicaid disproportionately impacts BIPOC communities leaving them without health insurance, hospice care coverage, and access to culturally sensitive hospice programs.

RELATED ISSUES

PLEDGE YOUR SUPPORT

Thank you for all your financial contributions! If you haven't already, consider making a monthly donation to this work. These funds will help me operationalize this work for greatest impact.

Subscribe on Patreon | Give one-time on PayPal | Venmo @nicoleacardoza

Read More