People of Color Need Better Access to All End-of-Life Care Options

Sep 25, 2019 Brandi Alexander people of color

Religion & Politics published an essay on Sept. 3, “How Race Matters in the Physician-Assisted Suicide Debate. The essay concluded: “patients of color, individual and systemic level encounters in healthcare can contribute to their disparate experience with implications including harsher treatments, such as amputations, and lower quality recommendations, such as for routine pain mediation.”I concur with this assessment by the essay author, Terri Laws, a professor of African and African American studies and religious studies at the University of Michigan-Dearborn who teaches courses in medical ethics and African American religious experience. 

In fact, according to the 2017 Journal of the American Geriatrics Society study “Racial Disparities in Hospice Outcomes: A Race or Hospice‐Level Effect?” black hospice enrollees were significantly more likely than white enrollees to be admitted to the hospital, visit an emergency room and withdraw from hospice. Experts say this disparity means black patients are more likely than white patients to endure unwanted medical treatment and experience unnecessary pain and family strife. 

However, from my perspective as a black woman who has spent 15 years empowering people of color across the nation to discuss end-of-life care options and to find out what they want, Ms. Law’s conclusion that: “For black and brown Americans, health equity is [a] more relevant political activity than the right to die as they choose” needs a deeper dive.  

In fact, national polls show most people of color support the option of medical aid in dying (even when pollsters use the inaccurate, pejorative term “assisted suicide” to describe it), but our inability to access it mirrors their inability to access healthcare throughout our lives. 

Opponents of medical aid in dying refer to it as “assisted suicide” or “physician-assisted suicide” to try to shame patients and doctors from participating in this legitimate medical practice to relieve unbearable suffering when aligns with their value system. The Journal of Palliative Medicine has published peer-reviewed, clinical criteria for physician aid in dying, not “physician-assisted suicide.” 

The reality is that people of color often are in denial of their mortality. As a result, they are more likely to suffer terribly at the end of life. A 2017 study from University of Washington and the  Fred Hutchinson Cancer Research Center found that blacks are less likely to have end-of-life care directives and nonwhite patients with leukemia received more aggressive treatment. Even after Aretha Franklin learned she had deadly pancreatic cancer, she never completed a living will or advance directive to help her family determine her end-of-life care.

The Bible (Ecclesiastes 3:1-8) says: “For everything there is a season, and a time for every matter under heaven, a time to be born and a time to die.” Those of us of faith know what happens after death based on our belief systems, but what about how we make that transition? How will we leave this earth?

Love it or hate it, medical aid in dying advocacy is transforming healthcare at the end of life. One year after the California End of Life Option Act went into effect in 2016, the Los Angeles Times reported that doctors in that diverse state are having more conversations with their patients about end-of-life care options. The physicians concluded that the law “has improved medical care for sick patients, even those who don’t take advantage of it.” 

In other words, the debates and discussions about end-of-life care have opened up the lines of communication in all communities. Improving end-of-life care for all is a direct result of these conversations in homes, churches, medical offices, synagogues, legislative offices and beyond. 

People of color are experiencing the dying process differently, in part because of their lack of access and usage of quality of end-of-life care. Informing, educating and listening to people of color to ensure their decisions fit their priorities and values is critical, particularly during the end-of-life process. Inclusive programs and materials can only help to empower all.

Not many issues are more personal and spiritual than those that arise around the end of life. As a person of faith, I have been taught about the power of discernment and the ability to make decisions based on my spiritual belief system. 

Medical aid in dying is no different. If it doesn’t fit your value system, then you don’t have to use it. Don’t, however, judge people who decide they need it by calling it “assisted suicide” or suggesting a lack of faith by those who even consider this end-of-life care option or any other option. The end of life is a time for quiet and personal reflection. I believe in a God of love, one whose son suffered so that we don’t have to.