"Six years ago after [college] graduation… it was becoming clear to me that existing in public puts me at risk to brutality, and sometimes death. Because I was living with my parents, I made it a practice to say, “I love you” to my mother before I left the house… I figured that if this was my unlucky day, at least those would be the last words she heard from me. That was one way I could negotiate with my possible death. Most of my decisions nowadays (how I carry myself, who I trust, how I speak, what I say, decisions in my career) are connected to me negotiating my possible death.”
The statement above was posted recently on Facebook by my friend Rodney. He was speaking directly to the experience of living today as a Haitian-American man in the midst of the COVID-19 pandemic and the attention to rampant race-based police violence. He went on to talk about his chances of death being “greater than he would like.”
Rodney ended his post this way, “So if I’m ever killed, let it be known here: I love you. Go be great.”
His post reminds us of what is now as clear as day: there are very real racial disparities in our country when it comes to morbidity (disease) and mortality (death), and there always have been. Many of us are learning for the first time that much of this disparity connects to legacies of structural racism going back to the system of slavery.
To put it bluntly, centuries of structural violence and suffering play out in how we live and how we die. And people like Rodney are coming to grips with this every day, perhaps now more than ever.
What Social Structures Affect Our Ability to Have ‘A Good Death?’
I have never liked the term “racial disparities in mortality.” It sounds so detached and sterile. But Rodney’s voice, the real-life stories of George Floyd, Breonna Taylor, Ahmaud Arbery, and many more bring this home in deeply human ways.
Black Americans live with the real risk of dying every day.
Another way to put this is to ask the question, “Who gets to have a ‘good death?’” The answer is very much linked to a person’s social privilege, such as race, socio-economic class, gender, and geographic location.
As a sociologist who teaches about death and dying, as well as someone who cares about the future of health care in America, and about justice in our societies, I feel it is time for us to confront the tragic reality of racial disparities in dying, and preparations for dying.
The Effects of Inequality in Death and Dying
The systemic structures that lead to limited educational resources, eviction, and redlining ripple throughout Black neighborhoods all across the U.S. These same inequalities are also present in end-of-life scenarios for many Black families.
They can show up in various ways like the following:
- Black Americans are less likely to engage in formal end-of-life planning processes than White Americans. However, as Rodney reminds us, Black people across the nation feel they must prepare psychologically for their mortality every day of their lives as they move around in a White world.
- Because of higher mortality, morbidity rates, and lower life expectancy, one may expect conversations related to death, dying, and grieving to happen more frequently in Black American households.
- Research shows that Black people in the U.S. are more likely to die in hospitals, requesting life-saving measures. They are also likely to have less access to pain medication, such as in palliative care cases, due to the biased historical assumption that Black American individuals could endure more pain.
- Black Americans report being less satisfied with the quality of their end-of-life care and often report concerns about provider communication. Reports about poor communication with their care providers as well as the larger context of doctor-patient mistrust are not new. Again, these situations stem from centuries of non-consensual medical exploitation such as the Tuskegee Experiment and medical experimentation on slave bodies.
- We must not forget that Black Americans have historically created informal care networks to care for one another. Anthropologist Carol Stack, in All Our Kin, reminds us to never forget these “strategies of survival” and practices of resilience going back centuries.
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Prioritizing New Healthcare Practices to Help All Communities
Our health care priorities must shift dramatically to offer high-quality care to those who have historically had the least access, and who have been listened to the least.
Whether talking about end-of-life care or basic health care, access is one part of the puzzle, but it is not the only solution. As I tell my students over and over, access does not equal justice. Access to a system that is ingrained in White privilege could create more harm than good.
- We need health care education that de-centers Whiteness, and re-centers culturally sensitive care.
- We need health care structures that prioritize hiring from and serving communities of color with empathy and compassion.
- We need providers who understand trauma, who prioritize trauma-based care.
- We need providers who study history and social science and understand and want to interrupt legacies of inequity.
- We need providers who take the time to humanize their patients and listen to their individual needs and desires.
- Cultural sensitivity requires the involvement of community liaisons such as spiritual and community leaders.
Cultural sensitivity requires understanding how toxic stress and intergenerational trauma operates in communities of color and shifts life expectancy
Everyone Should Be Able to Have ‘A Good Death’
I want to live in a society that cares for and honors our Black American friends and neighbors. A society that works hard to reduce racial disparities in health. A society that knows how to listen and offer comfort in life and death.
Let’s take this cultural moment as an opportunity to rectify health inequities. Only then can we achieve just and sustainable community-based care, especially in the context of death and dying.
Johnson, K. Racial and Ethnic Disparities in Palliative Care. Journal of Palliative Medicine 2103 Nov; 16:11) 1329-1334. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822363/
Loe, Meika. Aging Our Way: Independent Elders, Interdependent Lives. Oxford University Press: 2011.
Mar, JoAnn. Racial Disparities in End-of-Life Care – How Mistrust Keeps Many African Americans Away from Hospice. USC Annenberg Center for Health Journalism. https://www.centerforhealthjournalism.org/fellowships/projects/racial-disparities-end-life-care-how-mistrust-keeps-many-Black Americans-away
Stack, Carol. All Our Kin: Strategies for Survival in Community. Basic Books: 1983.