Social Determinants of Health - Medical Racism and Patient-Clinician Trust

Social Determinants of Health in Cancer Care

This episode was originally released May 27, 2021

Dr. Demetria Smith-Graziani (University of Texas) moderates a discussion with Ericka Hart, an activist and sexuality educator, and Dr. Kemi Doll (University of Washington) on the historical and structural reasons for patients’ mistrust of the healthcare system due to systemic racism in medicine, with insights from both the clinician and patient perspective.

TRANSCRIPT

LORI PIERCE: I’m Dr. Lori Pierce, the President of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care, and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed an ASCO position or endorsement. For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable, but ASCO is committed to advancing equitable cancer care for all individual – Every Patient. Every Day. Everywhere. I have dedicated this vision to my term as ASCO president. These conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what they look, receives high quality, equitable cancer care. Thank you.

DEMETRIA SMITH-GRAZIANI: Welcome to the fifth episode of ASCO Social Determinants of Health Series. I'm Dr. Demetria Smith-Graziani, and I'm a clinical fellow at M.D. Anderson Cancer Center. I'm joined today by Ericka Hart, an activist and sexuality educator, and Dr. Kemi Doll, a health equity researcher and gynecologic oncologist from the University of Washington.

This series is part of an initiative proposed by ASCO President Dr. Lori Pierce focused on increasing oncologists' understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer. Inspired by Dr. Pierce's presidential theme of equity every day, every patient everywhere, in this episode, we'll discuss the historical and structural reasons for patients mistrust of the health care system due to systemic racism in medicine within the clinician and patient perspective. So it's important to know that race is a social construct that continues to affect the health of marginalized populations. We have laws and practices that date back to chattel slavery, and clinicians really need to understand each patient's identity within the appropriate historical context in order to provide optimal care and engage in meaningful research to improve outcomes.

The health care system has not proven itself to be trustworthy in the past. It's still not trustworthy today. And there's a long history of institutional discrimination against racial and ethnic minorities, sexual and gender minorities, people with disabilities, and other marginalized groups that continues today and affects the patient-provider relationship. We'll focus today on anti-Black systemic racism within health care, and this will provide a foundation that we hope will encourage further discussion about other forms of discrimination within health care.

Thank you both so much for joining me today. We'll start with the first question, and that's that conversations about trust and health care among the Black community are usually centered around the Tuskegee study of untreated syphilis in the Negro male. But there are many other instances of clinicians and researchers engaging in unethical medical neglect and experimentation on African-Americans. So what other historical and current events should clinicians know about and what resources should they be using to stay informed? And we can start with Dr. Doll.

KEMI DOLL: SURE. So I think history is vital because without understanding our history, it's very hard for us to make sense of what's happening around us. And I think that the US study of untreated syphilis is-- in many ways, a medical education obscured the contemporary racism and the contemporary exploitation and mistreatment of Black people in the health care system. And so my first-- in terms of what else do people need to know-- is that they need to know that horrors as terrible as the syphilis experiment continue today all the time. I don't think you have to look far to find these incidences.

I will point out Dr. Susan Moore, a Black woman doctor, who died just a few months back being mistreated in a hospital system in the region where she practices and could not get care to the point where she was able to verbalize, I'm going to die. Because I am being mistreated, I'm not going to make it, and she didn't. So I want to gently remind us that to have to pull back to the syphilis experiment is demonstrating a willful not seeing, a willful choice not to see what's happening to us every single day.

The other thing that I would say for clinicians or researchers that want to stay abreast is that everything impacts health care. So the current trial of Derek Chauvin right now for the murder of George Floyd is an example of racism and how we value Black life. And so we need to understand as clinicians that when you walk into a room-- and now thinking about the oncology world that I'm in, the cancer world that I'm in-- and you are for example, trying to have a discussion with somebody about the risks and benefits of a certain treatment and survival and their life and maybe even trying to have a conversation that maybe it's time to stop treatment because I don't think you're going to make it and that patient is Black, you need to understand that that's happening in the context of us understanding that our lives do not matter to the same extent that other people's do just walking around on a daily basis.

DEMETRIA SMITH-GRAZIANI: Great point. Great point. Ericka, anything to add?

ERICKA HART: Yeah, for sure. Thank you for saying that, Kemi. That's brilliant and I do think it's important to be thinking about how this is continuing to show up contemporarily as folks will hearken back to the past as if we are now in a new day, and we are 100% not. But I do think what's important to talk about is whose stories get told. The focus now is on the Derek Chauvin trial due to the murder of George Floyd, but there wasn't this much attention, I would say, around Breonna Taylor's case and the fact that it wasn't actually addressed.

And even again, another marginalized community is Black trans people. When Black trans women die, what then is the national conversation? It doesn't exist. And I think that has a lot to do with the bodies that we are saying are worthy to be considered. And so what we talk about when I get so frustrated about the Tuskegee experiment being repeated over and over again is the erasure of Black femmes.

So J. Marion Sims is a pseudo medical provider who operated on countless Black femme people without anesthesia and then was named the father of gynecology. And then we come into the 1920s with Margaret Sanger and the experimentation of birth control experiments and the sterilization that continues to happen to this day. And what was happening is that Margaret Sanger used Black folks to say W. E. B. Du Bois was on-- I always say, "DeBwa"-- Du Bois is their name. They're from Massachusetts, so I'm going to give them spice.

W. E. B. DuBois really worked alongside of Margaret Sanger's eugenics project to essentially eradicate disabled folks and Black people and also went all the way to Puerto Rico to essentially attack and harm Black Puerto Ricans to create this birth control for white people. And then coming to the 1950s, we have Henrietta Lacks and the experiment on her body when she went to John Hopkins for actual care and the lack of informed consent. So I get frustrated when the focus is always on the Tuskegee experiment just as much as I get frustrated when we talk about police brutality being focused on Black cisgender man. There are so many folks who get impacted by the state, and often times we don't even hear their names because the media has construed who we see as important. And beyond the media, whiteness says whose identities are most important.

And it's important that when folks are studying medicine that you understand that you are also indoctrinated in this idea that certain people's identities are more valuable than others. And oftentimes, I'm told that there isn't much conversation around racial and social justice, gender justice at all in medical spaces. And I would say my resource is Medical Apartheid by Harriet A. Washington. It is necessary reading for anyone who wants to do anything in the world that relates to people's bodies beyond the medical spaces. I think it's important that you understand how folks bodies have been regarded in this country.

Another book I just got is called Medicalizing Blackness-- hold on, let me give you the author-- by Rana A. Hogarth. This is the book. Also, highly recommend-- it's just you have to do your research and really be applying this. Again, like Kemi said, it is not a function of the past.

It is happening currently. We can look to maternal mortality to really get the continuation of medical experimentation. I'm not a linguist, but even the word experiment has a lot to do with using someone to prove something.

So even inside of that, there is so much that we don't know that's not even really covered in these books. There's so much that has been buried. So yeah, that's what I would say.

DEMETRIA SMITH-GRAZIANI: Great [INAUDIBLE].

ERICKA HART: Thank you.

KEMI DOLL: May I have one more book Deirdre Cooper Owens, Medical Bondage, which focuses on the history of-- I love the pseudo. I love pseudo-physician. I'm going to start using that. Thank you, Ericka. A pseudo-physician J. Marion Sims, so thank you.

ERICKA HART: You're welcome.

DEMETRIA SMITH-GRAZIANI: This transitions well into a question about how does medicine as an inherently racist institution actually address these failings? One of the things that's been focused on recently is increasing diversity, increasing representation within medicine.

ERICKA HART: Yeah, so diversity and inclusion is ineffective. And what it does is it creates this idea that if you have cookie dough-- cookie dough without the chocolate chips is already kind of brown, right? But let's just imagine that it's mostly white.

So you have cookie dough, and then you're like, OK, you're not going to make chocolate chip cookies without chocolate chips, so you throw in the chocolate chips. That's diversity and inclusion. The basis, the foundation of it, is still white. You haven't done anything to uproot or change or acknowledge the harm that has been caused. What you are now doing is throwing Black people and non-Black people of color into the space to say, OK, look we got some Black doctors here.

But then, how do you address the fact that most medical schools are impossible to get into? The barriers that set up to actually get into medical school are incredibly financially impossible. And when Black doctors are practicing, they get so much racism that they experience from patients-- patients saying things like, I don't want that doctor. I don't want to work with them. What then is the impact on the doctor?

And then, can a Black doctor actually be politicized in their highly political position? Or do they have to essentially have-- I don't want to say minstrel show-- but perform Blackness in a way that's palatable to white people so they can keep their job? It has to go beyond identity. Identity will not save us. I want to know what your politic is, and diversity and inclusion is consistent with doing that as a way to absolve white institutions of their racism.

KEMI DOLL: If I could plus one, heart, like everything Ericka said times 10. I 100% agree especially regarding the point about identity. And it's not just about, I think, Blackness. It's about, I mean-- I don't know how to say this word-- but visible blackness, I'll just say. I mean, it's about the--

We are very hypervisible. Black physicians are hypervisible, especially in academic places. And I have to speak there because that's my experience.

So what happens is you walk in the door, and 30 seconds after you walk in the door, your face is on a poster. Somewhere, you in marketing materials, girl. You're already there.

And then on top of that-- so you're very visible. You just started. The scrutiny about what kind of doctor you are and the quality of care that you can provide is ramped up immediately even up and over what would be for a normal person starting.

Then you add on the layer of exactly what Ericka is talking about, which I have certainly experienced, is the also higher bar that patients have for you. Because they walk in, they're like, oh, you're my doctor. Now all of a sudden, you're reciting your pedigree, you're reciting how many cases of X you've done, you've done all of this stuff, plus the microaggressions that happen on a daily basis from staff who are supposed to be reporting to you but feel a type of way about reporting to a Black woman or a Black femme in a certain kind of position.

So you add on all of that. And so then, I say you add on all that, and then you turn to the Black doctor and you say, you're the solution to medical racism. It's ridiculous, it's insulting, and it's actually just racism. I agree 100% that simply having a Black doctor is not going to fix racism, and my perspective also is that it's necessary but not sufficient.

So we're definitely not getting anywhere without Black doctors. However, I personally did not get into my politic and understand race, gender, and the intersection of race, gender, and health and racism as it applied to my particular area, GYN oncology and endometrial cancer, until I was through medical training, through subspecialty training, and deliberately spent years consuming sociology and anthropology and equity frameworks, which just gives you a sense. Because I'm a Black woman watching all of this happen in front of me as a trainee.

If you do a four-week course in the summer on racism, you're not doing anything because it's about the embeddedness everywhere. It's about how we talk about Black bodies. It's about how we talk about race as a risk factor instead of racism as a risk factor. And I can just speak personally it's a journey out of that and then to turn around and look at it and then to say, now I am deliberately staying because I am deliberately trying to deconstruct.

And I do think that that saves lives. I do know that being in my position and a Black woman walking in with the politic and understanding that I now have is the difference between her getting the care she needs and not getting the care she needs. I've had people come to me as their third or fourth opinion because they can't have a respectful conversation with an oncologist who can listen to them and their concerns and who understands that everything isn't black and white. The things that we measure aren't always the things that matter to everybody.

And so it's both/and for me. We do have to grapple with the problem that Black people in medicine can obscure the progress towards anti-racism in medicine and towards deconstructing these things when all they are is identity and there's no effort to understand and define a politic. And I understand that makes us vulnerable, but it's always going to make us vulnerable until we remake the system. So that's what I would add.

DEMETRIA SMITH-GRAZIANI: Yeah. Thank you. It's really, really important points. So building off of all of that-- so let's say people are saying, OK, I'm learning to look through this lens where we're going to infuse the practice of learning about racism throughout medical training.

OK, now what do I do now? I'm a physician. I'm a nurse. I'm a health care practitioner. How do I use the power and privilege that I have to then to combat racism in medicine when I see it to help my patients? Who's going first this time? Maybe we can start with Kemi this time.

KEMI DOLL: It's-- OK. So what can I do is a hard question to me because there's a billion things to do, and so I just want to acknowledge that that question is sometimes used to not do anything. There's always something to do.

If the issue was you had high infection rates after all of the surgeries, people would have 30,000 things that they would try immediately tomorrow. So the first thing I just want to-- I have to say is stop asking that question. And in addition to reading something-- you got book recommendations already-- start doing something different. Just try. Iterate. Do that first.

Secondly, I would say that look in your own house. So what we know-- I'm going to quote a study and it's going to be terrible I can't tell you where it was. I can't remember anything about it. But it was about-- I think it was cardiologists, and they surveyed the survey cardiologists. And they were like, there was a study that came out that demonstrated that specifically-- getting to the intersectionality point-- specifically Black women, when reporting cardiac symptoms suggestive of a heart attack, are not referred to get cardiac catheterization to literally save their lives compared to white men and women and Black men.

After this, there's a study that asks cardiologists they say, OK, well, where do you think racism exists in the health care system? And it's like, out in the health care system, at my own hospital, in my own practice with me and my patients. And you might imagine what that looks like.

Oh, it's definitely out there. Maybe it's in my hospital. It could be in my practice, but not with me.

And so my answer to that question is acknowledge that there's racism in your practice because you literally live and breathe white supremacy. So acknowledge that it exists. We're not fighting that question.

And then because I am a research person-- I apologize-- get your data. Pull your-- stop assuming. Pull your data right now and look and see who's not doing well.

To Ericka's point about trans, non-gender binary people. Where are they? Are you asking people? Do you even have that data?

And then going on-- race, ethnicity, ethnicity breakdowns within the Asian population. Are you even looking to see how are we doing on these metrics? Who's getting care and who is not?

That is like the bare minimum of what you would do if you said, today, I am trying to change something. You would go get your own data. You wouldn't keep asking people, what should I do? So that's my answer. But also, just listen to Ericka.

DEMETRIA SMITH-GRAZIANI: Yes. Yes. [INAUDIBLE] kind of ruled this into how this affects your day-to-day experience as a patient, tying that together, hopefully. Yes. [INAUDIBLE]

ERICKA HART: Yeah, sure. I'll tie it together as well. I think everything that can be said and what I'll add is the lack of intersectionality, the lack of looking at intersecting identities that influence how folks receive or don't receive health care. One point that I feel like when we're having these conversations about medical institutions is that we leave out insurance companies, and insurance companies are a major barrier to actually accessing health because it is politicized in this country. It is connected to the government, which it should never be.

Folks should have access to health care. That should not even be a radical statement. Everybody should have access to health care, and we don't. I'll tell you right now-- and this is not an exaggeration-- I pay $660 a month for health insurance, and that is just because I don't want to leave my oncologist.

I don't want to have to search for another oncologist. I want to stay with this oncologist for the next-- I've been with them for five years. $660, right? And I'm in a privileged position where I can afford that, but it is still a lot of money. That is ridiculous.

So addressing the barriers-- my breast cancer surgeon actually saw me when I did not have health insurance. I don't know that-- I won't say his name because I don't know what you all to be finding him or doing nothing to him. That's my homie.

He really saved my life. He was willing to see me even though I did not have health insurance. Stop putting up the barriers of red tape. Right now, what we're seeing in states like Arkansas and Mississippi are racist and transphobic governors and politicians who are trying to stop trans young people from accessing health care.

The government is going to do what the government is going to do. What are you going to do when folks come into your office? Are you going to tell a trans young person, oh, the government says that I can't treat you? Hell no.

So my suggestion to medical providers, to folks who work in any field that serves people, is to risk losing your job. Put your job on the line for somebody else. Do not not give me care so you can continue to collect a check. How do you sleep at night?

What needs to happen is that medical institutions need to go away. They are consistent with supporting-- they work with the state clearly. They are informed by the state. Therefore, they are also informed by police. We are inside of a police state.

All of these things are connected. As a Black queer non-binary femme who has to navigate medical institutions on a regular basis, it is terrifying. And it is exhausting how most even when I get at the door and I fill out the copious amount of paperwork that ask me for everything besides how much butt hair do I have.

There's nothing on there that ask me my pronouns. There's nothing on there to ask me my gender identity. There's most likely to be an assumption of who my partner is or who I love or how I love, which is now triggering. I'm now stressed out to be at the doctor.

I'm also a person of size. I am inside of fat activism spaces I am considered a small fat. So any time I go to the doctor, there are some sort of correlation made with my health connected to my fatness.

It's pseudo-science. Anything you're talking about in terms of race has then a function of anti-Black racism, how I have been harmed in terms of racism, how my body is weathering due to the constant racism and transphobia and classism and fatphobia that I have to navigate. Don't contribute to that. Cut it out.

DEMETRIA SMITH-GRAZIANI: Yeah, it's kind of-- it seems complex, but it is kind of simple, right?

ERICKA HART: It's so simple. That complexity is a function of white supremacy as well-- to make it complex, so we could constantly be, like Kemi said, what do we do? And what do we do? It's nonsense.

You know what to do. You are unwilling to do it because it could eventually, hopefully lead to this institution falling apart. Great.

I want to go to the doctor underneath a tree. I don't care if the red tape to get to the technology has to be addressed. And that's all I mean.

DEMETRIA SMITH-GRAZIANI: All those barriers.

KEMI DOLL: Exactly. I just want to point that out though because I think in medical discursive spaces when people hear Ericka saying, we don't need the institution. We don't need all of this stuff. We need to dismantle it.

That gets skewed into we don't need anything, like all of this-- we're going to go back to bloodletting. That's not what we're talking about. But what we're talking about is we don't have to couple those things together.

We don't have to couple innovation and knowledge together with power and class and exclusion. Those can be decoupled. And I don't know, I'm like-- I don't know. My view is always like that is the goal. And then, what am I doing today?

What am I doing today that is disruptive? If you're doing something today disruptive, you're disrupting, and you're disrupting every day. Sometimes, that disruption is in the form of how you're talking to somebody as the first person who's talking to them as a person, as a whole human being, as a whole non-defective human being, and seeing everything that's on top of them not as something intrinsically wrong with their body, but as a function of the experience that they've had.

But in addition to that, in addition to an individual disruption of thinking about people as problems to solve, then disruption can also look like, for example, not allowing the same appointment length of time for a patient who speaks your language and a patient who doesn't. Just think about that. If all of your appointments are 30 minutes and you see-- or 15-- and you know somebody is coming to see you that y'all don't speak the same language, that means that you have to have a translator.

By definition, by the structure, that person gets half as much time with their doctor. They pay the same amount, they have to deal with the same insurance, all of those things, and yet they get half the amount of time because you're spending time going back and forth. That is a systematic disruption that's available to you right now.

To say, schedulers, an hour every time somebody comes in who does not speak my language? Double the appointment time because that's the bare minimum of equity. I mean, there's more things. I don't want to pretend like that's the solution. But there's an infinite number of things that you can do while still choosing to be in a system that disrupts that system is how I think about it.

DEMETRIA SMITH-GRAZIANI: I think we're always afraid of rocking the boat. But really, we have to think about, well, what are the consequences? And sometimes the consequences aren't really that bad, and that all depends on your personal identities and how you might be [INAUDIBLE] within a larger institution. But a lot of times the consequences aren't that bad if you push that boundary.

I wish I could continue this conversation all day. There are so many gems here, but I know this is just the beginning of the conversation. I really hope this is something that continues among oncologists, among other clinicians, health care providers, researchers. But we'll end there.

But thank you so much for sharing your time with me. This was amazing. And thank you all for joining us on this episode of ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by leaving a review or emailing us at [e-mail].

SPEAKER 4: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.