Pushing Back on the System of Fear

By Stephen Nelson

Since the New Year and my writing about my fears of people of color, I’ve been thinking a lot about this. As I re-read my blog post about my upbringing and the instillation of fear of people of color, especially black people, it strikes me as somewhat hopeless. Especially the part where I say:

“This fear is ingrained. It is automated. It is immediate. It is engaged even if we are not conscious of it. We don’t have to do anything to make it happen. It just does. Just like my car doors locking; my stereotyping, bias, and fears play out automatically. Sometimes I’m aware of this, and sometimes I’m not.”

This feels like maybe we can’t do anything about it. This is absolutely not the case. This is not the case because the patterns I’ve identified within myself are the product of intensive socialization on the part of a White-dominant system. This system miseducated me by creating false narratives about people of color through mainstream media and by segregating me from people of color to decrease the chances that these narratives would be disproven through my own relationships with people of color. This is not just “happenstance”, but rather a calculated and intentional move on the part of the White dominant structure in order to make sure that White people go along with the system and keep it in place. So, my fear only SEEMS ingrained because it is meant to feel that way. Thus it will also feel unchangeable in the minds of Whites.

This past November I was presenting at the Overcoming Racism Conference in St. Paul. We had a lively group in our workshop with approximately 20 participants. I presented on the social determinants of health as well as institutionalized racism and how it affects health care delivery. I focused quite a bit on stereotyping and unconscious biases of all of us, specifically health care providers. Here is one of the slides I showed during that presentation:

Nelson Blog Image 1

 

After the workshop was completed and I was leaving the building to trudge through the snowy cold streets of St. Paul to get to my car, one of the participants of my workshop flagged me down. She was a person of color. We talked for quite a long time and she was very complimentary about the workshop. She did give me one piece of advice. She suggested that I change but one-word in the entire presentation. As I pondered her recommendation, and I continue to do so, she is absolutely right. Since then, I have changed the above slide. This is how the slide reads now when I present on the topic of health care provider bias. See if you can see the subtle but so important and impactful change.

Nelson Blog Image 2

A single word can have such profound meaning. One single word. Saying that unconscious biases are normal lets White people off the hook in a sense. White people cannot help it. It is just the way it is. There is nothing Whites can do about it. My use of the word normal essentializes unconscious racial biases.

One single word. Using the word common helps to illustrate the frequency with which White health care providers rely on stereotyping during work with patients and families. I do feel that it is important to stress the important role of health care provider bias in the persistence of racial health inequity. Using the word common does this without essentializing biases for the listener and for myself.

I am so very thankful for the advice I received. One simple word.

My fear and biases are not normal. These are not an essential part of my being. They are not permanently ingrained. As I stated in January: “So, if I am honest with you I will say that I still have some fear of black people.” But what might be more accurate would have been to say, ‘if I am honest with myself, I am still plagued by the socialized fear of black people I was given throughout my youth and into early adulthood’ because this is really what I am struggling with in my daily interactions with patients, friends, family and everyday folks I encounter throughout my day. I did not ask for the messages I received, no White person ever does. And they have taken root and it is a slow and arduous process of noticing the fear, confusion and misunderstanding they produce in me on a regular basis.

And, I work daily to undo this and push against this fear and unconscious bias. Before entering the room to see a patient, I take just a few seconds to check my bias and potential discomfort if the patient is a different race than my own. I focus on our shared humanity. I can find something in common with a person of color as easily as I can with a white upper middle-class suburban family. I find that I spend just as much time with families of color as I do with white families. This helps to break down some of the fear and mistrust of the healthcare system that affects so many patients of color. It has also translated into my offering specific therapies to all appropriate patients without my preconceived notions of their ability to adhere to our treatment plans.

But, I also know that this kind of individual “self-check”, while important, is not enough. For this reason I also try to see how the system of racial oppression is situated at work and do my best to challenge those structures and the ways they deny resources, in some cases life-sustaining resources, to families of color. Working on my own unconscious bias and stereotyping is critical, but I must also work to dismantle racism at the institutional level.

I want to share a specific example of how working on our unconscious biases improves patient trust and outcomes. My hospital has been part of a multicenter NIH study of sickle cell disease, a disease that in North America predominantly affects people of African descent. Participation in clinical trials by people of color has historically been very low. There are many reasons for this that include mistrust on the part of the patient as well as bias on the part of the provider. Because of fear and unconscious bias patients of color are often not approached (by the majority white providers) to participate in clinical trials. Unfortunately, this translates into most evidence-based protocols being developed using outcomes of white patients. This only perpetuates healthcare disparities for people of color.

I am proud to say that the sickle cell trial met its accrual goals one year ahead of schedule. Compliance with the study requirements was greater than 98%. The study was completed ahead of schedule. All of the 121 participants on this trial are of African descent. This was one of the most successful in NIH- sponsored clinical trials in history, and not a single patient was White.

We can improve care for patients of color. We can undo our fear and unconscious bias. We have to push back against the systems of fear that are in place. We can do this.

A System of Fear

by Stephen C. Nelson, MD

In addition to training and consulting with Hackman Consulting Group, Stephen Nelson is currently a physician specializing in the treatment of Sickle Cell Disease at Children’s Hospital in Minneapolis, MN. Dr. Nelson received a Bush Fellowship in 2009 to study the role of racism in the treatment of patients with Sickle Cell Disease, and regularly trains and presents on racism in medicine, provider bias, and transforming racial disparities in health care.

As I listen to conversations about the events surrounding the homicides in Ferguson and Staten Island at the hands of the police, I am struck by some similarities that I encounter in healthcare. Too often, it appears we get stuck on single, isolated incidents at the expense of appreciating the “big” picture. By focusing on individual acts, we lose sight of broader systems that may be affecting these individual acts.

I was especially disheartened to hear a particular conversation on NPR on the way home from work the other evening. I was listening intently to the interview on December 5th with civil rights attorney Constance Rice on how she built trust with police. I was particularly frustrated to hear her say:

“Cops can get into a state of mind where they’re scared to death. When they’re in that really, really frightened place they panic and they act out on that panic. I have known cops who haven’t had a racist bone in their bodies and in fact had adopted black children, they went to black churches on the weekend; and these are white cops. They really weren’t overtly racist. They weren’t consciously racist. But you know what they had in their minds that made them act out and beat a black suspect unwarrantedly? They had fear.”

I was frustrated to hear her use the word” racist” when talking about these individual white cops. This makes racism an individual act and not a broader system of oppression. What I believe she really meant to say was that these white cops were not prejudiced. By focusing on the individual police officers, she failed to acknowledge the systems of racism and white supremacy in our society that led these police officers to fear black men. I absolutely believe that many white cops fear black men. But, she didn’t discuss why this is true.

White people are scared of black people. Just admit it. We are. We are not proud of it.

This is how we were raised. This is how we were taught. This is “just the way it was”, especially in the South, especially in Virginia where I grew up in the 60s and 70s. But this miseducation didn’t stop in the 60s and 70s. It continues today.

So, if I am honest with you I will say that I still have some fear of black people. Think about it… Use the “dark alley” scenario, or “walking down the street alone” and you hear foot steps behind you. Are you relieved in either situation when you realize the person behind you is white?

As with many of us, we learn this fear at a very young age. For me, it was when our family was in Atlanta visiting friends. I had finished 7th grade. It was the summer of 1973. Dad got tickets for us to see the Atlanta Braves play the New York Mets. He was especially excited because Tom Seaver was pitching for the Mets that night. We were driving to Fulton County Stadium and some neighborhood children had placed a detour sign to force traffic down their street. The goal, as I discovered, was to give you directions to the parking lot and then ask for money. When we turned down that dark street, my mother reached around and locked all of the doors to the car. She was afraid. So I was afraid. The boys giving us directions were black. We were in an all black neighborhood at night in Atlanta in 1973. It was subtle. It was very quiet. But, it reinforced a feeling deep inside me that I carry to this day. I was to fear black people.

We have a college friend who apparently does this a lot. Every time she would lock her car door her husband would ask “Did you see a black person, Linda?” My husband Peter and I would start asking each other the same question if we locked our door. “Did you see a black person, Linda?” We’d ask friends or family when they locked their car door “Did you see a black person, Linda?” We thought it was funny. This was before I started recognizing my white privilege, before I started to understand how racism really works in our society, and before I began to look at my world with a critical race lens to see, to really see how people of color are treated in our country.

This fear is now automatic. Thanks to the ingenuity of the American automobile industry, we don’t have to think about it anymore. Our car doors lock automatically. Sure, this is for our own safety, right? Or is it so we don’t have to ask “Did you see a black person, Linda?”

This fear is ingrained. It is automated. It is immediate. It is engaged even if we are not conscious of it. We don’t have to do anything to make it happen. It just does. Just like my car doors locking; my stereotyping, bias, and fears play out automatically. Sometimes I’m aware of this, and sometimes I’m not.

Stereotyping, unconscious bias, and fear have affected, in such profound ways, the care that I have given to my patients and families of color. Like my car doors, I was unaware. It just happened. I never even noticed it.

Turns out, my patients and families noticed. How do I know this? Dr. Hackman and I asked. Race matters. Race and racism affect the delivery of health care. To learn more you can read our manuscript published last year: “Race matters: Perceptions of race and racism in a sickle cell center.” Pediatr Blood Cancer 2013;60:451–454 as well as our chapter “Dismantling racism to improve health equity” in Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination. Nova Publishers, New York, 2013, Chapter VI, 147-160.

Physicians and health care providers, for the most part, are good people. We go into medicine to give quality care and to help patients and families. We like to think that our healthcare system somehow functions in a vacuum, outside of our highly racialized society. We are not taught how the structure and systems of our society (racism) affect the social determinants of health such as poverty, education, incarceration, homelessness, unemployment and insurance. The disparities seen with these social factors in people of color are partly to blame for the profound racial health inequities seen in the United States.

Some of the blame also lies with us, the healthcare system itself. We are overwhelmingly white. According to 2010 U.S. Census data, Minnesota is now 5.2% black and 4.7% Latino/Latina. However, of the 13,083 licensed physicians in Minnesota only 261 are black and 313 are Latino/Latina. The numbers are even more disparate when looking at the nursing workforce. Of the 57,639 RNs in Minnesota, only 105 are black and 30 are Latino/Latina. And, of the 220 graduates from the University of Minnesota Medical School in 2013, one was black.

The education and miseducation I received growing up that led to my fear of blacks was not very different from my medical education. Who teaches us in medical school? Whites. Only 4% of American medical school faculty are from under-represented minorities (black, Latino, Native American). What are we taught? Evidence-based protocols developed by majority white researchers, using majority white patients, carried out by the majority white health care system.

What are we not taught? We are not taught about the social determinants of health and how racism affects these as well as health outcomes. We are not taught to see our own unconscious biases and stereotyping.

Just as police officers may fall prey to their own biases, stereotyping and fears; so too may the health care provider. In both cases, the result may be deadly for people of color. While the presence of more significant training for providers regarding racism may help to lessen the racial disparities in health care, the opposite is also true. The absence of substantial training on issues of race and racism will serve to perpetuate and potentially exacerbate racial health care disparities. Until racial issues are honestly addressed by the health care team as well as the judicial system, it is unlikely that we will see significant improvements in racial disparities for Americans.

Fear is real. But, we can lose it.

Here’s wishing for a less fearful and more joyful 2015 for all of us!

Physician, Heal Thyself

Last month I was at a speech given by Minnesota Department of Human Services Commissioner Lucinda Jesson where she laid out the possibilities and challenges of the Affordable Care Act and its impact on our state’s medical options. She then showed slides from a Commonwealth Fund study identifying Minnesota as simultaneously one of the best states for overall quality of health care and one of the very worst in terms of racial disparities in health care. How is this possible? In asking this question of physicians, nurses and health care administrators, the answer is most typically an overgeneralized referencing to “the system” or “economic factors” or “the complicated nature of health care these days”, but rarely are these (majority white in Minnesota) health care providers willing to say “and part of it is the bias I, as a white provider, have been socialized to hold regarding People of Color.”

 

In a colleague’s PubMed search regarding racial disparities in health care, over 4,000 articles were found – a majority of which identified provider bias as one of a handful of reasons for racial health care disparities in the U.S. Additionally, the National Health Care Disparities Report of 2011 also names provider bias as one of the key determining factors regarding racial disparities in health care. This report builds on over a decade of knowledge regarding the role of provider bias stemming from the Institute of Medicine’s report “Unequal Treatment”, mandated by Congress in 1999 and published in 2002 which found that provider bias and stereotyping were a significant contributor to racial disparities and that extensive training for providers is needed. This was eleven years ago: racial disparities have not lessened, and providers are still not being trained. The influence of  “provider bias” is not exclusive to health care and is widely present in other major sectors of U.S. society such as education, law, government, non-profits and for-profits – areas that I happen to do a lot of racial equity training and consulting in. And while these other sectors of U.S. society can be quite challenging to train in because of resistance, denial, or misinformation, I have found that no sector has been as difficult to even get in the door as the health care system. Mind you, their reticence to be trained has not stopped these providers and their major employers from holding summits and colloquia and conferences on racial disparities in health care. It has not stopped them from saying that racial disparities are a significant problem. It has not stopped them from suggesting that “something must be done”. And yet, in the last two years of trying to gain any traction in providing a race, racism and whiteness (RRW) training specifically designed for health care providers, I have hit wall after wall after wall. Some of it has been the simple fact that I am not an M.D. or an R.N. and therefore “cannot possibly have anything to say” to doctors or nurses. The rest of it, however, is whiteness and the insidious ways it seeks to preserve its hold on the health care system in the United States.

 

The current and historic white centrality of this overall institution is substantial, and runs deep (see Harriet Washington’s work, Medical Apartheid). I was at a presentation a few months ago where a white, male speaker was quite forthrightly naming RRW and its problematic effects on health care. During the question and answer period, a researcher who has been looking at provider bias for some time stood up and said that if you try to address provider bias through the lens of RRW you might make some people (read, “white” people) defensive and shut down their willingness to learn. Instead, this person suggested that we use terms like “cultural competency” and “diversity” training in order not to alienate anyone (again, read “white” people). It was quite amazing to hear her say this given that she is a well-known researcher in the field. More disconcerting, however, was the fact that “diversity” and “cultural competency” frameworks, while fine in their own right, are awful approaches for racial issues because they are not in any way designed to address race, racism or whiteness. As a result, the solution she offered belies the decades of research she herself has been conducting on racial bias, and in fact would allow the racial dynamics of racism and whiteness in health care to stay safely in tact due to the utilization of a completely ineffective “diversity” approach.

 

But where does this deeply rooted bias in providers come from? When looking over the arc of a doctor or nurse’s educational career, here is what we know: if they have a standard U.S. P-12 education, they have been woefully mis-educated about issues of race, racism and whiteness. And, if they have gone to most undergrads in the U.S. they have been exposed to very little racial justice content (an examination of most undergraduate general education credits will reveal this). Follow that with a nursing or medical school education where there is virtually no content regarding race, racism and whiteness and add to this a society whose messages are steeped in racial stereotypes and biases, and we get white providers who, through no fault of their own, are likely drowning in bias and preconceived notions about their patients of color. And so, unless a physician or nurse has actively sought out racial justice content either via an undergrad major, a medical school specialty, or through other avenues of professional development, there is no reason to presume that a white provider graduating with an M.D. or R.N. will have any awareness of issues of race, racism and whiteness beyond the standard stereotypes seen in mainstream media.

 

The answer to this in the short term is professional development for those already in the field. The answer in the long term is intentional and thorough undergrad (pre-med), nursing, and medical school education regarding racial issues and their impacts on health and health care. Both of the above bring me to my earlier point – I have been trying for two years through grant applications, conference presentation proposals, formal and informal meetings with hospital administrators, pitch presentations to groups of providers, and written appeals to health care leaders to get the chance to offer doctors and nurses a deep and comprehensive race, racism and whiteness training firmly grounded in health care and the daily realities of providers. And, as I mentioned, I have hit resistance, obfuscation, and simple silence at almost every turn. This is frustrating for obvious reasons – if provider bias is a key factor in racial disparities, then providers need to be trained. It is problematic for another reason, however, in that training providers is one of the most expeditious and efficacious ways to address racial disparities in health care. While large, structural changes in health care might take years or decades to enact and lead to observable, addressing provider bias can be done effectively and substantially in a much shorter time frame. In a study with a colleague, even a very short RRW training series helped a group of residents make important (and measurable) changes in their practice. Knowing this, it is even more problematic that the barriers to training providers on issues of RRW seem so intractable.

 

It may be hyperbolic to say in everyday life that “White Liberalism kills”, but it is not too much of a stretch to say it when it comes to health care and the desperate need that some of the most vulnerable people in this society find themselves. For example, hospitals who gage their ER efficacy on whether or not patients return with the same presenting symptoms will often conclude that their ER has done a good job because a patient did not return. However, if that hospital does not take into account that perhaps the patient did not return because they experienced racism and poor treatment, they are likely misreading that data and are quite possibly contributing to the persistence of racial disparities. This unconscious racial bias and its concomitant manifestations of racism and white privilege are clearly harmful to the patient (and whole communities of patients) in that they do not receive the care they need. However, it is also harmful to the entire health care system and the providers within it because it degrades their capacity to truly care for those in need. Perhaps I am being naïve here, but I believe that most if not all of these providers do what they do because they truly and deeply care for the health of their patients. I believe that they take their oaths seriously and know that the care they provide is literally life and death on a daily basis. And, I choose to believe that if they were aware of the ways that unconscious bias was impacting their ability to care for their patients, they would do something about it immediately. That is why I will continue to knock on the doors of health care, that is why I will continue to hold out hope that one will open, and that is why I am sure that at the end of the day providers’ willingness to lean into this difficult and often painful content will not only help their patients but also help them to heal as well.

Racial Health Care Disparities: How Do We Move Forward?

I have been practicing Pediatric Hematology in Minnesota for 20 years. For the bulk of that time I’ve had the distinct honor and privilege of caring for children with sickle cell disease. Sickle cell disease is one the most common inherited genetic disorders, and is the most common abnormality detected on nationwide Newborn Screening tests. There are 100,000 Americans living with sickle cell disease. It is a disease that affects the red blood cell and has multiple complications including severe pain, stroke, lung disease, infections, and early death (http://scinfo.org/). Although sickle cell disease is a global issue that affects people of all races, in the United States patients are predominantly black.

As a white man, trained by mostly white faculty and white mentors, I never really gave this much thought. Physicians strive to provide quality health care to all of our patients and families and race shouldn’t be an issue, right? Well, then I stumbled into a workshop on White Privilege given by Heather Hackman at the Rainbow Families Conference in 2008. Only then did I begin to consider how my identity as a white male physician might affect the health care delivery to my patients of color. This consideration was long overdue and since that moment, I have been on a journey to better understand racial health care disparities and, with Heather, develop an action plan to address this inequity.

While many factors affect health care equity, disparities based on race that target communities of color are consistently reported in the management of many diseases. For example, blacks receive a lower standard of care than whites when being treated for breast cancer, orthopedic problems, cardiovascular disease, pain, and end-of-life care. According to the 2009 National Healthcare Disparities Report produced by the Agency for Healthcare Research and Quality, many of these discrepancies are not decreasing. Blacks receive worse care than whites for half of the core measures studied, and only about 20 percent of measures of disparities in quality of care improved over the study period of 2000–2007. Being uninsured was the single strongest predictor of quality of care. However, when correcting for uninsurance and socio-economic status, blacks still eceive worse care than whites (www.ahrq.gov/qual/qrdr09.htm). At the local level, a recent Wilder Foundation study reported similar results. Blacks and Native Americans in the Twin Cities have a significantly shorter life expectancy than whites, even after correcting for socio-economic status. (“The unequal distribution of health in the Twin Cities: a study commissioned by the Blue Cross and Blue Shield of Minnesota Foundation,” October 2010 available at www.bcbsmnfoundation.org/objects/Publications/F9790_web%20-%20Wilder%20full%20report.pdf)

Barriers to racial health care equity include the health care system (insurance, funding, white-domination in provision of care), the patient (poor health literacy, fear, mistrust), the community (awareness, advocacy), and we the providers (bias, attitudes, stereotypes, expectations). The combined magnitude of these factors can seem overwhelming, and yet there are points of entry for each of these major variables. As providers, I believe we have the greatest potential for changing racial disparities by working on our own biases. There is much published evidence that our behavior contributes to race/ethnicity disparities in care and that patients and providers perceive race as an issue in health care delivery. Heather and I recently published some of our work in this area (http://www.hackmanconsultinggroup.org/hcg/wp-content/uploads/Race-Matters.pdf). So, what can we do about provider attitudes and biases?

Stay tuned…..Heather and I have developed a training module for health care providers to address race, racism and whiteness and how these affect health care delivery. We hope to present data from our initial pilot training at the 7th Annual Sickle Cell Disease Research and Educational Symposium & Annual National Sickle Cell Disease Scientific Meeting April 14-17 in Miami (http://fscdr.org/).

Similar to Heather’s blog from January 13 Racial Justice Work: A Spiritual Imperative, I strongly believe that racial justice work is also a Health Care Imperative. In the words of Martin Luther King, Jr: “Of all forms of inequity, injustice in healthcare is the most shocking and inhumane.” National Convention of the Medical Committee for Human Rights, Chicago- 1966 (http://www.standupforhealthcare.org/blog/martin-luther-king-jr-a-civil-rights-icon-s-thoughts-on-health-care).

 

© 2013 Hackman Consulting Group – Do not reproduce part or all without permission.