Culturally-competent death doulas are professionals who understand cultures other than their own. Unfortunately, the majority of death work is done by White people who have very little understanding or knowledge of how bad deaths disproportionally affect Black people.
Dr. Ramona Rhodes is a physician who works in internal medicine at UT Southwestern Medical Center and specializes in racial and ethnic disparities in older adults’ medical care. She told Next Avenue that Black Americans have specific differences compared to White Americans experiencing end-of-life.
“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,” Dr. Rhodes said.
It’s important we understand the reasons behind this truth.
Inequality issues from birth affect death
When we consider factors leading to limited access to quality health care in general, we know that financial insecurity plays a large part. This extends to end-of-life as well. Poverty results in a huge number of people dying deaths that no one should experience. Here are some other factors to consider.
Lack of concern
The tragic deaths of George Floyd, Ahmaud Arbery, and countless other Black Americans are only the most recent evidence of America’s systemic failure to acknowledge and value Black lives. It is the foundation upon which this country was built.
Limited access to quality health care
In undervalued areas where there are fewer car owners and unreliable public transportation, residents delay or skip medication, often miss appointments, and will postpone even urgent care. These populations also have a higher late-stage presentation of certain medical conditions. Additionally, physician shortages result in patients experiencing longer wait times. Fewer EMT professionals mean delayed care.
When Black patients seek medical care, they are less likely to be believed or taken seriously. Because of implicit bias, studies have shown that White doctors give Black patients, more than any other racial group, incorrect or reduced medical options.
When many death doulas get started, they join networking groups and senior care associations with few professionals of color. They don’t host as many information sessions in undervalued neighborhoods. As a result, deaths in Black communities happen at a higher rate and the elderly don’t even know these options exist.
As just one example, in an oft-cited 2016 study, many White medical students recorded wrong assumptions about higher pain tolerance among Black patients. They based their decision to offer less-potent pain meds on unsubstantiated misconceptions that Black people had less sensitive nerve endings. These beliefs began with racist doctors in the 19th century who spread these lies in an effort to justify unethical medical testing on enslaved people.
Lack of insurance
Almost one in four uninsured Black Americans live under the poverty line. They disproportionally live in states with reduced Medicaid options. When many of us are one illness away from total financial ruin, this is especially true for low-income populations.
Part-time, seasonal and minimum-wage workers don’t get benefits like paid time off or sick days. If they do spend precious time taking care of themselves or loved ones, they do it at great financial risk to themselves and family.
High dissatisfaction rates with end-of-life care
Research suggests that Black Americans simply don’t know about hospice programs and that in itself is a barrier to their use. There are also conflicts between the individuals’ spiritual and cultural beliefs and the goals of hospice care. A preference for aggressive life-sustaining therapies among families of color is a possible reason for this dissatisfaction.
The U.S. medical establishment has a disgraceful legacy, from pre-colonial days through and beyond the horrific Tuskegee Syphilis Study, of discriminating and exploiting Black Americans. The collective trauma and memory remain deeply embedded in the community’s consciousness.
Awareness and Understanding
We need culturally competent death doulas who are aware of this disparity so we can work to alter it. Additionally, we must understand:
- Religious Faith: Black Americans are more likely to connect their serious health experiences with religious beliefs. As a result, they’re less likely to see a terminal diagnosis or illness as a predictor of life expectancy. Doulas who aren’t familiar with this might mistakenly label it ignorance.
- Isolation: A projected 1.2 million elderly Black Americans will face life without their family around. That means fewer caretakers or advocates.
Who gets the privilege to plan?
Advance care planning is getting more attention. People talking with loved ones and health care providers about what they do and don’t want at the end of their lives is happening. They’re appointing surrogates to help make decisions and advocates to help support those decisions. They’re contacting family attorneys to legally document their wishes, and this often includes limited life-prolonging treatment if they’re unlikely to survive or maintain their quality of life.
All of this planning is a step in the right direction.
However, death preparation still remains a taboo subject among marginalized populations. And who can blame them? When the system has failed and shortened Black lives every step of the way, it’s natural that Black Americans feel a strong reluctance to engage with that same system when planning for death.
Culturally competent death doulas can break down barriers and build trust within the Black community. Because without the benefit of planning, Black Americans are less likely to receive quality death care.
And that’s not okay.
It’s already hard to talk or think about death. If we are not able to properly plan, it’s even harder.
People struggling to make ends meet are a bit preoccupied to think about advance care directives. Creating a peaceful death is a luxury that many cannot afford. So let’s help turn that around.
If you’re a death doula, get educated. Reach out to vulnerable communities. Seek those who might partner with you to spread awareness. Offer discounted rates for those who might need financial help.
Our Black neighbors are entitled to a good death — one with dignity and compassion. Culturally competent death doulas can make that happen. If you’re in Chicago and in need of similar support, reach out to Anitya Doula Services.