How race plays a role in palliative care

“Black life remains unexpected.”

I have been mulling over these words written by Ibram X. Kendi, in The Atlantic. This followed his piece exploring the “anniversary” of slavery in 2019. He experiences this 400-year marker both with hope and concern given the persistence of a split America: “Black death matters to racist America. Black life matters to African America.” He writes, “there may be no more consequential white privilege than life itself.” That our white lives are supported, valued, and even encouraged goes without saying. By extension, our white deaths are felt as devastating and tragic. But what about black deaths? As Mr. Kendi points out, our policies and behaviors, as a society, show a very different reaction.

As a palliative care physician, I take care of patients with serious and largely life-threatening illnesses. Even if they have years left to live, death is always in the room lurking when we talk. I address symptoms of disease, and of treatment, but I also discuss the end of life. The literature in palliative care shows that African American patients have less interest in advanced care planning, complete advance directives at a lower rate, receive fewer palliative care consultations, and are less likely to enroll in hospice care. We discuss cultural sensitivity and cultural humility. It has even been asked whether our own white cultural emphasis and push for planning for death are even fair if there are those that find it uncomfortable or even disturbing. Even more, if African Americans may live the experience that some other Americans don’t value their lives as much or, even worse, actually value their deaths, how can we even have these conversations?

In palliative care, most of us truly believe that less end of life care is what most people would want if they understood what it would look like. And, in my experience with most patients, descriptions of dying on sedatives, in an ICU, hooked up to breathing tubes and beeping monitors, with limited space for comforting family members, almost uniformly results in expressions of distaste and disavowal. Conversely, conjuring a scenario wherein one spends their last days in their own bed, surrounded by the sounds and touches of loved ones, tends to result in a sense of tangible relief.

But the space between adequately treating illness and planning for, and finding, peace when the end is near can be full of trepidation, particularly for those who understandably don’t trust that their very lives are valued or “expected” as Mr. Kendi writes. As palliative care physicians, in an almost entirely non-black workforce, we need to work harder to confront systemic racism and the trauma that it engenders, particularly around issues of life and death. In addition to actively addressing bias in ourselves, and in our workplace, and really hearing each individual’s experience and growing and shifting our own communication skills and understanding in the process, we need to directly name the racism with our patients and in our worlds, and we need to work to change it. Only then can we start to earn all of our patients’ trust and help our country to become whole in the process.

Eve Makoff is an internal medicine physician.

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