(Rochaun Meadows-Fernandez is a writer and research-based storyteller who processes the world through her award-winning writing. She found her voice in the aftermath of birth trauma and continues to sharpen it through the lessons she gains mothering her children. She finds joy in troubling one-dimensional narratives on Blackness, family, by speaking to the nuances of mothering while Black in the Mountain West. She’s also the founder of #freeblackmotherhood—an effort that asks Black mothers to prioritize self-love and authentic expression in all things, while asking them to imagine a world where Black women are free to feel. Her mediums change, but her passion for health, especially reproductive matters, remains the same. This post first appeared in Next Avenue in November 2018 and is used with permission.)
Jodi Savage was her grandmother’s caretaker in her last days. Like many Black Americans, her grandmother’s cultural beliefs and religious background led to very little discussion around the end of life. Culturally speaking, Black Americans on the whole tend to avoid discussing end-of-life topics for fear of speaking things into existence. Focus is placed on making the best of the time you’re given. A lack of cultural competency from physicians led to a misunderstanding of Savage’s grandmother’s needs and minimal support through the death-planning process. Savage endured all of this while trying to remain strong as her grandmother battled Alzheimer’s.
Savage wasn’t prepared for the process of making such impactful decisions on her grandmother’s behalf. No one assisted her with end-of-life planning during the process of caretaking, and she didn’t discuss end-of-life care until the night before her grandmother died.
Savage’s experience isn’t rare. Dr. Ramona Rhodes, an associate professor who works in internal medicine at UT Southwestern Medical Center and specializes in racial and ethnic disparities in older adults’ care, says Black Americans have a few key differences with end-of-life experiences compared to white Americans.
“Members of underrepresented groups have been found to opt for more aggressive treatments at the end of life, [are] less likely to participate in advance care planning and [are] less likely to enroll in hospice at the end of life,” Rhodes said. “The reasons for these disparities are often multifactorial. The research suggests that mistrust in health care systems may be one of those reasons.”
Inequality Affects End of Life
It’s no secret that wage gaps, discrimination and institutional racism limit Black Americans’ access to health equity. However, what’s discussed a lot less frequently is that these factors impact the way this group experiences death, too.
Nearly one in four Black Americans live in poverty as compared to one in 10 white Americans, and for older Black Americans, that number is even larger. Nearly 64 percent of older Black Americans are on the cusp of poverty. Because of financial insecurity, preoccupation with daily survival can take priority over death-related planning like writing advance directives and funeral planning for Black Americans. Studies suggest around 24 percent of older Black Americans have advance directives as compared to 44 percent of older white Americans. Savage’s grandmother had life insurance, but no will.
Black Americans predominantly live in states that refused the Medicaid expansion. Those who face financial obstacles are disproportionately impacted by a lack of coverage. The Black community has an uninsured rate of 12 percent, which can make health conditions more difficult to manage.
Black Americans report higher rates of dissatisfaction with medical and end-of-life care options like hospice than white Americans. The medical system’s historical mistreatment of Black Americans impacts trust in end-of-life providers.
Only 38.3 percent of Black American Medicare patients enrolled in hospice care prior to their deaths, compared to 51 percent of white patients.
“The research suggests that mistrust in health care systems may be one of those reasons,” Rhodes said. “This mistrust may stem from historical occurrences, such as the Tuskegee Syphilis Study [where the U.S. Public Health Service researched syphilis by letting it go untreated in 622 Black men in Alabama] or from patients’ and/or family members’ own personal experiences with the health care systems that were not positive.”
Lack of Cultural Competency Affects End of Life
It’s rare that end-of-life care providers educate employees on the importance of cultural competency, and even fewer of the providers are Black themselves. Naturally important unique cultural qualities that are held dear to Black individuals end up overlooked.
Black Americans are more likely to manage both every day and critical health experiences with their religious faith. That faith leaves them less likely to see a chronic illness or terminal diagnosis as a predictor of life expectancy. Medical professionals who aren’t familiar with this commonality might interpret this custom as delusion and be unsure how to engage with the patient.
Despite health challenges, Savage’s grandmother’s spirituality remained but was misunderstood on her path to an Alzheimer’s diagnosis.
“During the hospital stay that led to her being diagnosed with Alzheimer’s disease with psychotic symptoms, one doctor said my grandmother had religious ideations because she was very religious, called herself a prophet and said God spoke to her,” Savage said. “Had he taken the time to learn about her background, he would have known that my grandmother had always been very religious.”
In addition to a lack of knowledge about options, Rhodes said lack of culturally-competent care is commonly experienced by Black Americans.
“Other causes that have been cited in the literature include a lack of knowledge about advance care planning, palliative and hospice care and a perceived conflict [between] spiritual or religious beliefs and the hospice and palliative medicine philosophy of care,” she noted.
Alone at the End of Life
Savage’s grandmother was lucky to have her. Data suggests that in the near future, Black Americans might be exceptionally vulnerable to having their wishes ignored due to a rising lack of family members. By 2020, a projected 1.2 million older Black men and 1.6 million older Black women will not have kin. The consequences of this go much further than loneliness.
As the rates of aging Black Americans without relatives increases, they will be left without caretakers or anyone advocate on their behalf.
End-of-life issues and disparities that impact Black Americans are a cumulation of the challenges and systemic issues that plague Black Americans through their entire lifespan.
Savage’s experience made her aware of the importance of having these conversations ahead of time so they don’t have to be done in the moment.
“We often make end-of-life care decisions based on our inability to let go of our loved ones, but our loved ones are entitled to a good death — one that is humane and with as little suffering as possible,” Savage said. “Sometimes, letting go is the most compassionate and loving thing we can do.”
In the future, Rhodes would like to see providers designing and implementing culturally-sensitive interventions that address these disparities. She added: “Ultimately, for me, it is important that patients be informed not only about their condition, but their options for care at the end of life. I want them to be able to make a well-informed decision — whatever that decision may be.”
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers
who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN seeks to educate qualified individuals in practical,
peaceful ways to end their lives, offer a compassionate bedside presence and defend
a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law.
Final Exit Network is a 501(c)3 nonprofit organization.
The data presented in this article should not be surprising to anyone who has considered black-white disparities in medical care in the US. However, I find the attitude (perhaps it is a superstition or merely a fear) that some people “tend to avoid discussing end-of-life topics for fear of speaking things into existence” to be prevalent in all groups. In forty years as an attorney, I probably had twice as many people tell me they needed to do a will as I did those who followed through. The same is true of advance directives. Both are easily put off for one reason or another. When people wait until they have a terminal illness to tend to such matters, the fear becomes a self-fulfilling prophecy. However, the data provided clearly demonstrate the inequality that persists in the US for those of African-American ancestry.
In all my dozens of talks on right-to-die over 30 years I never saw a black face in the audience. A pity. They would have been welcome in the mostly liberal audiences.
“It’s complicated.” Research has show that a mixture of cultural, economic and social factors determine the behavior of any group (or individual). That creates plenty opportunity to speculate on why people do, or not do things. I hope that our readers agree that dogmatism is not justified and that open-mindedness is needed.