Racial Disparities in Palliative Care: Can We Be Honest?

RACIAL DISPARITIES IN PALLIATIVE CARE:

Can We Be Honest?

Vanessa Grubbs, MD, MPH

Let’s be honest. I’ll start.

When I landed a book deal with Amistad, an imprint of HarperCollins Publishers that focuses on writers of color, I feared being pigeon-holed as yet another Black physician only talking about race. We can be experts in and talk about other things, universal things, I fixated on. Furthermore, I believed palliative care when it came to end-stage kidney disease was a universal thing. The thing that applied to everyone because everyone must die. There’s a line in the book that tells on me and my mindset then1:

“Dialysis has gone from a miracle to something mundane but to be avoided at all costs to the thing we Americans— no matter if rich or poor, Black, Brown, Yellow, or White— cling to, because it holds the promise of more time.”

Silly me.

Because of course race in embedded in palliative care too. When I participated in the very first NephTalk, a several-day workshop patterned after OncTalk, I remember a peer saying something like, “Some of these families, there’s just no talking to about stopping dialysis.” I can’t remember if he specifically said “Black families,” but that he took furtive side glances at me and only me, that was certainly the implication.

Sure, a small study found that Black people in a primary care setting were less favorable to non-aggressive care and advance care planning than their White counterparts.2 And another study found that Black people with end-stage kidney disease were nearly third less like to use palliative services than their White counterparts.3 But the study findings are not the point. The point is who is blamed for these findings and how these findings are generalized to the entire community.

The blame in these studies and others is usually set squarely on the Black community. Specifically their religiosity and mistrust of the health care system. It’s true that a 2014 Pew Center survey found that religion was very important in the lives of Black participants, but it also found 25% reported religion was only “somewhat” or “not at all important” in their lives. Tuskegee, or more accurately the United States Public Health Service study that chose to observe the natural history of Black men for 40 years, 25 of which were after penicillin had been discovered, is most often targeted as the root of mistrust. Certainly Tuskegee is a familiar tragic example of what the medical system is capable of, but to attribute today’s mistrust to that event, is to dismiss individuals experiences engendering mistrust in the medical system today and often. I think many people can acknowledge interpersonal racism plays a role in creating race disparities in palliative care. But no one sees themselves as the culprit. The disparities are always assumed someone else’s fault. But rarely have I heard anyone consider that the problem is us, the palliative care providers. That patients’ and families’ reactions have anything to do with how we approach, engage, or deliver our recommendations. That colleague certainly didn’t.

This is exactly why we should stop “implicit bias” trainings. They don’t work. A study of police officers showed that while short-term biases improve with implicit bias training, their actions—stops, frisks in stops, and arrests among Black people—stayed the same.4 And before someone suggests that health care providers are different because most of us got into this line of work to “help people,” the evidence indicates that healthcare professionals exhibit the same levels of implicit bias as the wider population.5

So what do we do instead? We should start with telling the truth.

Our medical institutions are racist, as is everyone in them in any position of power in any given situation to some degree. The power position may be just a rung up on our hierarchical racial caste ladder (where Black women are at the very bottom) but it is still a position of power. This includes palliative care. And if we could be honest about this truth, then we could get on with the work of undoing the racism. Pointing fingers isn’t getting us anywhere. Another research study is unnecessary.

Consider a house built with materials contaminated by mold. Everyone is exposed in some way. The exposure in different rooms of the house may be non-uniformly affected, but all are still exposed. Just because one doesn’t see it, smell it, or has become physically ill because of it, doesn’t mean it doesn’t exist.

And just because we as individuals or maybe even our direct ancestors had nothing to do with building this house, by living in it, one assumes the responsibility of upkeep.

Similarly, our house—our health care system—is built upon a foundation of a hierarchical racial caste system. Therefore, it is racist by design and no one in it can be unaffected. If one is not personally affected, through structures that marginalize that group or through internalized belief that they or their group is inherently inferior, then one is either inflicting harm or standing by allowing it to happen.

So, if we would simply acknowledge this truth—rather than defending the innocence of one’s self or division or institution— we could get on with the work of fixing our house. And by extension, fixing the house feels impossible if one imagines the solution is to demolish the house and build a new one. Though I often wish we could just burn it down and start over—the affected individuals remain the same and would only poison the new structure.

Therefore, start where you are. Disinfect your contaminated clothes, your contaminated skin. And then find a group to help replace a pipe, a board, one piece at a time—recognizing that if you’re not vigilant, the mold will sneak back onto your clothes and your skin.

Empathy is the solution.

While the pandemic has laid bare just how apathetic towards the needs of others if inconveniencing our “individual liberties” is required, providers can often empathize with the medical suffering people endure, even if we ourselves have never experienced it. (Well, at least when we’re not blaming the patient for causing it.) We can think things like, how awful the headaches that brain tumor is causing and how horrible that brittle type 1 diabetes must be. We don’t know for sure, but we can imagine ourselves in that situation and what it might feel like to us. Arguably, nobody displays such empathy more than palliative care providers.

But what about when it comes to race?

Here we’re more likely to refer to “them” and “these families” and apply some generalization, usually negative, to everyone we meet from that group. The generalization may be formed from whatever revisionist history we were taught in schools or the media. It may even be formed from an experience with a patient. We rarely pause to consider how nuanced people are among the groups we encounter—just like the ones we belong to.

It’s time we start being honest. The integrity of our house depends upon it. Vanessa Grubbs, MD, MPH is with the Department of Ambulatory and Preventive Medicine, Alameda Health System, Oakland, CA. drvanessa@thenephrologist.com, website: thenephrologist.com

References

1. Grubbs V. Hundreds of interlaced fingers: a kidney doctor’s search for the perfect match. New York, NY: Amistad an imprint of HarperCollins Publishers; 2017. 2. Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc. 2008;56(10):19531958. 3. Wen Y, Jiang C, Koncicki HM, et al. Trends and Racial Disparities of Palliative Care Use among Hospitalized Patients with

ESKD on Dialysis. J Am Soc Nephrol. 2019;30(9):1687-1696. 4. RE W, SJ M, RS E, et al. The Impacts of Implicit Bias Awareness Training in the NYPD. The John F. Finn Institute For

Public Safety, Inc. https://www1.nyc.gov/assets/nypd/ downloads/pdf/analysis_and_planning/impacts-of-implicitbias-awareness-training-in-%20the-nypd.pdf. Published 2020. Accessed October 6, 2021, 2021. 5. FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics. 2017;18(1):19.