The Hurdles Facing Black Families Navigating Serious Illness

Note: This transcript has been created with a combination of machine ears and human eyes. There may be small differences between this document and the audio version, which is one of many reasons we encourage you to listen to the episode!

Dan Gorenstein: Hundreds of thousands of adults die each year from serious illness — cancer, heart failure, dementia. But many more are living with those conditions, dealing with chronic pain, coordinating care, preparing for the end of life. And data show there are significant racial disparities when it comes to how the people with these diseases use the health care system.

Today, what stops seriously ill Black patients and their families from getting the care they want in life…and in death. From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein. This is Tradeoffs.

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[SOUND OF CAR DOOR CLOSING, IGNITION STARTING] 

DG: This is the sound of Deborah Brunson starting her weekend. 

[MUSIC FROM EARTH WIND & FIRE “SING A SONG”] 

DG: Deborah lives in Wilmington, North Carolina on a coast dotted with beautiful beaches. But that’s not where the 70-year old retired educator and her husband Bernard are headed this Saturday in October. They’re off to Durham to see Darius, their youngest…again.

Deborah, how many nights would you guess you slept over at the hospital?

Deborah Brunson: Oh my goodness. I can’t even really…oh, I can’t even really say.

DG: It’s a long drive — two-and-a-half hours up there — where Darius has spent the last month. Deborah’s stayed over so many nights at the hospital, she’s ranked all the sleeping spots.

DB: I’m either sleeping in on the recliner, or they have a little pullout bed. But you know how that goes. So, I’d rather be in the recliner. [laughs]

DG: Why?

DB: Oh, because, you know, the last thing I need is for them to be calling the emergency room cause I done fell and broke something rolling off of that thing. So no. I’m in the recliner!

DG: Humor has helped these last five years. Doctors diagnosed Darius with a rare, aggressive leukemia back in 2017 at age 23. He’s been admitted to the hospital more than a dozen times. Deborah has found herself repeating a motto to Darius she raised him on.

DB: Live every day as fully and as freely as you can because nobody’s guaranteed the next day. Nobody.

DG: On these long drives to the hospital Deborah smiles knowing Darius has lived a lot of good days. He’s written stories, cooked in some of North Carolina’s top restaurants, explored a career in stand-up comedy…even made a kind of pilgrimage to New York City… 

Kevin Hart: It’s a driveway You drive in. You drive out. What the hell I need lights for? 

DG: …to see Kevin Hart perform at Madison Square Garden.

Kevin Hart: I was wrong. I need lights. [Audience laughs]

DG: And on these long drives, Deborah’s had time to think about why she’s made such sacrifices. As a mother, and as a Christian, it’s who she is — that’s a piece. But also, Deborah is anxious. Without her in the room, she is worried doctors and nurses may fail to give her 28-year old son what he needs.  

DB: During his journey, you know, there have been a couple of instances where I felt that the care wasn’t where it needed to be.

DG: Scores of studies show that seriously ill Black patients often don’t get the care they need, when they need it. They are diagnosed later with dementia, die sooner from most cancers. And they’re more likely to become seriously ill in the first place — in part because they’re less likely to get the care that prevents chronic diseases like diabetes from becoming deadly. There’s no one clear, causal reason that explains this inequity, but bias, unequal access to care and racism all play a role.

Surveys show that Black Americans also are less likely to trust their doctors, nurses and hospitals. The consequences of these inequities can be especially dire for patients like Darius — one of millions of adults with a serious illness — diseases that are often incurable, physically limiting and cost tens of thousands of health care dollars a year.

In short, he needs his doctors and nurses to be at the top of their game. And Deborah’s made it her job to ensure that happens. So when she and Bernard finally slash through the traffic outside of Raleigh and pull up to the hospital, the two are on the clock…alert. 

DB: We go up to his room. We check in with him. We check in with the nurse. 

[HOSPITAL SOUNDS]

DG: They’re vigilant. 

DB: And then when he’s getting a treatment, we’re watching right along with the nurses. We’re monitoring, we’re trying to stay out of their way, but we’re still in the room.

DG: They do this, says Deborah, because the couple has seen the health care system fail Darius before. 

There’s this moment that sticks out. Deborah calls it their deepest valley. At a different hospital back in 2018 Darius had been admitted for a raging headache he’d gotten after a treatment for his leukemia. 

DB: He had to be in a fully dark room. He could not stand any noise at all. So those are extreme symptoms that something is not right.

DG: Deborah was patient at first, trusting the medical team to run their tests, get to the bottom of things. But days turned to weeks and her son was suffering.

DB: And then somebody says, well, maybe the headache is not as bad as he’s saying it is. Or maybe it’s not really a headache.

Deborah both could and couldn’t believe what she was hearing. She’d heard stories from friends, seen news reports about Black patients not being treated or having their concerns dismissed. But to watch her own son fighting cancer say to her that hearing the sound of her texting was unbearable, and then have his care team deny those symptoms to Darius’s face? 

DB: And, you know, you are coming in here every day you can’t explain to us, okay, day 5, day 10, day 15, day 20, you cannot explain to us why he is still having a headache. I’m like, you need to figure it out.

DG: She and Bernard were firm — pushing, advocating, asking for more tests, more specialists.

DB: What about this? What about that? Have you thought about this? Have you thought about that?

DG: On day 30 — after a month of intense pain for Darius and lobbying from Deborah and Bernard — a specialist finally found the culprit: a life-threatening abscess in Darius’s brain. He needed two emergency surgeries, the second more invasive than the first. Deborah spent the day praying and pacing the waiting room during Darius’s second procedure.

DB: And it took forever and ever and ever and ever. And I’m just sitting there with Bernard and I’m just thinking, “Oh my God, my baby has died.” But the doctor came out. He said, “It took a long time. We got it. And I just collapsed.”

DG: Deborah was so thankful, so relieved. And so furious. Not only had Darius’s doctors left her baby in pain for all those weeks, but their delay in diagnosing the problem could have killed him.

Was this just hard to diagnose, she asked herself? Implicit bias? Even explicit racism? 

DB: I just, I don’t know, you know, it can be insidious. You don’t know how to take these things. Whether this is somebody who really truly is just incompetent at their job or whether there is some other layer going on there that you don’t know. You feel like in many ways you’re in it by yourself. So you don’t have like four or five other people with you there talking about, “Oh yeah, that happened to me,” or “That doctor did that to me too,” so you don’t know. You’re not sure.

DG: The data certainly suggest that Deborah and Darius are not alone. More than 20 studies have shown that Black patients are less likely than white patients to have their pain properly diagnosed, treated and managed.

Deborah is clear Darius has mostly gotten excellent care. They’ve seen the health care system at its best: the life-saving surgeries, the saint of a nurse who comforted Darius late one scary night when Deborah couldn’t be there. 

But with Darius’s health so fragile, they can’t afford to see this system at its worst. So Deborah stands guard, passing as many nights in the hospital room recliner, making as many trips up I-40 as it takes until her son comes home.

DG: After the break, we talk with a researcher who studies how these disparities shape not only the lives of the seriously ill, but their deaths too — and what it will take to change that.  

MIDROLL

DG: Welcome back. For seriously ill patients like Darius Brunson there’s a special part of the health care system dedicated to reducing their suffering as they live and as they die.

For people still focused on living, there’s palliative care to help manage symptoms, provide spiritual and emotional support. And for those at the end, there’s hospice care. Research shows that patients who get these services experience less pain and emotional distress and fewer unwanted interventions at the end of life — and their caregivers fare better too.   

But research also shows fewer Black patients and families get this kind of care. 

Karen Bullock: If this is the gold standard of care and people like me — Black people — are refusing this care, I wanted to understand why. 

DG: Karen Bullock is a licensed clinical social worker and a professor at Boston College. Throughout her career, Karen’s struggled to find funding and that’s made it harder to study this issue. That’s meant learning what she can from smaller and more qualitative studies, delaying her plans to build a much bigger data set. 

KB: That’s a choice that I’ve made to continue doing this work, but it’s been a sacrifice.

DG: Karen’s stuck with this work for the same reason she started it: her mom Annie Mae.

Annie Mae was diagnosed with stage 4 lung cancer when Karen was getting her PhD in sociology and social work. She became her mom’s caregiver the final four months of her life, even trekking from Boston to North Carolina to attend appointments. Karen saw up close doctors and nurses struggle to help her family navigate end of life decisions — second guess their choices, stumble over awkward questions about their “cultural preferences.”

KB: I mean, here I was a doctoral student and half the time I didn’t know what they were asking or what they were talking about.

DG: Annie Mae was never sold on most of the end of life care doctors offered. She never warmed to the idea of hospice — said she didn’t want strangers in her house. And Annie Mae was not alone, Just 35% of Black Medicare beneficiaries use hospice, compared to 50% of white ones. It was only when Annie Mae died that Karen began to see just what all these people from communities like hers were missing out on — what Karen and others call a good death.

After examining the experiences of more than 1,000 older Black patients and caregivers over her past two decades of work, Karen’s identified two big barriers.The most obvious: a deep-rooted mistrust of clinicians and the larger health care system.

KB: Why should Black people believe that a health care system is going to honor their wishes when for your lifetime, the system hasn’t honored your wishes? You haven’t had access to health care. And now as they’re approaching the end of life, to ask them to trust these same systems of care is a really difficult thing to do.

 DG: That lack of trust is one reason, Karen says, Black seniors are three times less likely than white ones to complete an advance directive documenting the kind of end-of-life care they want. Even her own mom never filled one out.

The second barrier Karen’s found is particularly true of hospice care — the care people get at the end of life at home or in a facility, free from aggressive medical intervention. Karen says it’s more subtle — a constellation of signs to Black families that this kind of care isn’t for you. It’s for white people.

KB: Hospice is a philosophy of care. We need to remind ourselves that this philosophy of care was brought to the U.S. from Europe. This is a European model of care that many white people find to be extremely helpful in dying a good death and having their needs met until the end. And there are certain aspects of that philosophy of care that are culturally incongruent for Black people in particular.

DG: One example, says Karen, is the spiritual care component of hospice. Surveys show spirituality plays a much larger role in the lives of Black families, but white hospice workers may not be familiar with those families’ religious traditions. 

DG: Karen, as you say, hospice is not a place. It is a philosophy of care. So some people are gonna want it, some people are gonna not. Given the incongruity you talk about, how much of a problem is it that fewer Black people are choosing hospice care?

KB: If there is a way in which patients can receive care, that they would not be in pain, that their spiritual needs could be met, that their cultural needs could be met, then yes, to answer your question, it is hugely problematic because the vast majority of people who have the highest rates of chronic illnesses are not receiving this gold standard of care at equal rates of white people. But on the other hand, if the care isn’t meeting their needs, should we have something else to offer them? Maybe we should, but we don’t have anything else to offer them.

DG: Let’s talk about solutions, Karen…about what else the health care system could offer Black patients and families that might build trust and actually meet their needs. What changes would you like to see the health care system make? 

KB: I think the number one thing that we can do in this country is look at the workforce development problem. If we had more Black doctors, social workers, nurses and patients could see that the system of care is committed to people of color because they employ them, because they’re integrated into the setting. And I’m not suggesting that simply because a person looks like you that you automatically trust them. 

But what does happen when you see a person who looks like you, you automatically conclude that this person has some idea what you might be experiencing in this care setting. And that phenomenon is one that you can’t teach…what it’s like to have experienced racism and how not to fear it, how not to think about it when you’re in a health care setting that historically has refused care to you and or your loved ones.

DG: And I appreciate that answer but I know experts also say that diversifying the health workforce in a meaningful way could take a very long time. What about a potential solution in the more immediate term?

There’s talk in health policy circles about expanding palliative care, which provides much of the same support as hospice but without that same requirement to “give up.” Do you see upside for Black patients and families, Karen, in policies that increase access to palliative care? 

KB: Yes, I absolutely do because one of the reasons that Black people shy away from hospice and end of life care is because there isn’t room to reevaluate and rethink and to ask for more if you change your mind. It’s too finite. And palliative care creates the opportunities for individuals to have a starting point, like this is what I think now and what I might want, but as I go across the illness continuum, I might feel differently. People need to be able to think about it and rethink about it and change their minds and palliative care gives you that option.

DG: Is there any progress, any data that makes you hopeful on end of life care getting more accessible and more relevant, I guess, and/or more relevant to the Black community?

KB: It does give me hope that increasingly more attention is being given to structural racism and systemic racism. Prior to the COVID-19 pandemic, we weren’t labeling racism as a social determinant of health. And now we’ve begun to look at racism as a factor. That gets us a little bit closer to understanding these gaps in utilization and access to care a bit better. So I’m hopeful that as the research is being collected and being published in academic journals where health care providers [and] clinicians are reading and that they’ll begin to rethink, you know, this approach.

DG: Karen’s clear that even though there’s progress being made on understanding and defining this problem, there’s very little progress on diversifying the workforce and there’s a lack of data on whether more Black people are accessing palliative care. 

Karen says she’s been on a long, largely lonely research journey these past 20 years. When I ask her what keeps her going, she brings it back to her mom Annie Mae.

Many parts of her mother’s care were not culturally competent, made Karen cringe, or made her mad. But the final three days were excellent.

Annie Mae had refused hospice up until the last day she could make decisions for herself. Once Karen became the decision maker, she made a different choice, and she’s so glad she did.

KB: In retrospect, seeing that my mother could actually die well is what set me on this journey to help others to be able to choose the options that could be available to them if we could incorporate more cultural competence in this work that we do.

DG: And what happened in those final few hours?

KB: Because we were in our own space, you know, there were as many of us as we wanted to have around the bed, even overnight. We could do all the things that culturally mattered to us. We could pray out loud, we could shout, we could sing, and that was one of the things that made the most significant difference in my mother’s capacity to die well.

DG: And was Annie Mae conscious in those last couple hours? 

KB: Well, according to the hospice philosophy, the hearing is the last to go. The hospice social worker said, “Continue to say the things you want to say because she can hear you even if she can’t respond.” And so we believe that, yes, that she was able to be comfortable and she was able to pass with dignity because we did all the things that we knew she would have wanted us to do. And that’s the message I would like to carry forward so that health care providers can create the space for other families to do the same.

DG: To have the good death. 

KB: To have the good death, yes.

DG: Karen has known Deborah Brunson for almost 25 years. And she’s seen how hard Deborah’s worked — and is still working — to help Darius live as good of a life as he can with a rare and unpredictable cancer. Darius recently enrolled in an experimental clinical trial. Deborah says they are staying positive.

DB: There are plenty of people walking around that the medical field said, “You should be dead and they’re still here. Absolutely no one knows. That’s why they call it the practice of medicine. It’s not perfected.”

DG: At the same time, she and Darius have also talked about death — what she calls the transition. He’s documented his wishes in an advance directive. Deborah knows the hospice in town. 

And if that time comes, she says she’ll be right by his side to make sure that her son’s choices are honored, and to let him know that whatever they are, those choices are okay.

DB: We didn’t come here to stay forever. You know, you run your race and you keep the faith, you live your life and then it’s okay. The struggling and whatever it is you’re doing, you can let it go now, and it, and it’ll be all right. 

Update from May 18, 2023 rerun:

DG: Less than a month after this episode first aired, Darius Brunson passed away. He was 28.

His mom Deborah told us in the days leading up to his death, Darius was “blessed to fully experience the laughter, love, and embrace of his family and friends.” At the same time, Deborah also says her family felt let down by the health care system once again — this time by a nurse from a local hospice agency.

Deborah says the nurse struggled to keep Darius comfortable and calm in his final hours, forcing the Brunson family to get involved in ways they’d never expected. To this day, Deborah second guesses whether Darius would have gotten better care in a hospital. Still, she says knowing Darius was able to die in his own room surrounded by family brings her some peace.

I’m Dan Gorenstein and this is Tradeoffs.