Author: Priyanka Datta (PGY 2)
Contributor and Editor: Smruti Desai (PGY4)
This blog post is dedicated to Sha-Asia Washington, Amber Rose Issac, Cordielle Street and countless other women who have died from childbirth related complications.
I am the first person in my family to go to college and medical school. I am also a descendent of slaves. As a resident in a diverse EM program such as ours, my voice is not only heard, but celebrated. Having learned about the centuries-long mistreatment of Black people in medicine, I do not take this voice for granted. With this in mind, I dedicate this post to those patients who had nobody to speak for them throughout the history of medicine.
The history of American gynecology was founded in the institution of slavery. In 1808, American slavery became dependent on domestic slave births as a result of a federal ban on slave importation.[1] Subsequently, slave owners, now needing a new source of slaves, became invested in the birth of healthy children. White physicians, such as J. Marion Sims, used this ban as an opportunity to experiment on slaves without their consent. At the time, a common complication of childbirth in slaves was vesicovaginal fistula [as a result of substandard care of laboring slave mothers]. This threatened not only a slave woman’s ability to perform hard labor but also her future reproductive capacity. Sims, under the pretext of treating these fistulas, performed surgical procedures on slave mothers without anesthesia, which at the time consisted simply of chloroform and ether.[2]
Sims performed procedures on eleven slave mothers without sedation or analgesia – one of them, Anarcha, underwent 30 such experiments. At that time in history, many physicians including Sims believed that black people experienced less pain than white people. However, in his autobiography The Story of My Life, Sims, in describing his experiments, writes about another slave that “Lucy’s agony was extreme…and I thought that she was going to die.”[2] Despite writing this, he still supported the notion that it was not necessary for slaves to receive anesthesia during gruesome procedures. It is widely known from his autobiography, publications, and available history text that he would not only have slaves rest on their knees and elbows during procedures but also have other slaves hold the women down to control their response to pain [2]. At the beginning of his career, he was widely supported within the medical community. However, as his colleagues learned more about the excruciating pain his experimental “subjects” went through, support for him began to change into criticism. The following year, he moved to New York and formed his woman’s hospital, where he would perform the same procedures on wealthy white women with anesthesia.
Sims is not the only example of a physician who was famous for his mistreatment of slaves. Dr. William Aiken bored holes into the head of a slave named Lucinda, who had a bony growth around her eye. He performed this procedure without anesthesia and consequently left her disfigured. [3] Another slave, Harriet, suffered from epilepsy, and in order to test the results of electrotherapy, was electrically shocked for 53 minutes without anesthesia. Physicians interpreted her protests “as a sign of electrotherapy efficacy.”[3]
The famous Tuskegee experiments from 1932 to1972 studied the effects of untreated syphilis in Black men despite penicillin being a known cure.[4] Physicians at the time treated patients’ physical ailments in exchange for food and free medical care; at the pretext of offering these “benefits”, they knowingly withheld the cure of a debilitating disease from these men. This experiment ended 48 years ago. However, I am strongly reminded of these experiments whenever a patient refuses a COVID swab out of fear that physicians may be inserting the virus into their bodies through it.
Henrietta Lacks’ story is where overt, physical racism meets the systemic racism that has lasted for generations. Ms. Lacks was undergoing treatment at Johns Hopkins for cervical cancer. At the time, Johns Hopkins was one of the only hospitals in the area that treated poor and black people. Ms. Lacks was not aware of the side effects she would experience during her treatments – a picture of her consent form (Fig 1) is not only devoid of a risk-benefit profile but also does not specify why she was getting the procedure. In one of her doctor’s notes, she was “told she could not have any more children. Says if she had been told so before, she would not have gone through with treatment.” [5] It is therefore apparent that Ms. Lacks was not given that most basic aspect of research–informed consent.
Fig 1. Henrietta Lacks’ consent form.
During one of Henrietta Lacks’ treatments, cells were taken from her cervix without her knowledge. Using these samples, Dr. Gey created a cell line known as HeLa Cells, which have been used in research for Parkinson’s Disease, AIDS, influenza, and the development of a vaccine for polio.[6] This became a multimillion-dollar industry, with large payoffs for pharmaceutical industries and the researchers involved. Meanwhile, Lacks’ children and family lived in poverty, often being unable to afford doctors’ visits.
To this day, certain biases and false beliefs about black patients persist amongst the medical community. In 2017, the nursing textbook NURSING: a Concept-Based Approach to Learning stated that “blacks often report higher pain intensity than other cultures.” [7] Additionally, studies have shown that white medical students and residents have a false belief that black people have a higher pain tolerance and are likely to undertreat their pain.[8] It is therefore not surprising that, based on the history of mistreatment of black patients and the pervasiveness of biased beliefs, black patients have a greater distrust of physicians than do white people.[9]
As a result, the U.S healthcare system has sustained inequalities that have a disproportionate impact on people of color and other marginalized groups. Some of these inequalities include gaps in health insurance coverage and uneven access to services, leading to poorer health outcomes among certain populations. African-Americans bear the brunt of these health care challenges; for example, they are more likely to die from stroke, heart disease, and preventable complications of cancer and diabetes, amongst other conditions.[10] The disparity in their healthcare outcomes is not limited to chronic conditions. African-American children are ten times more likely to die from gun violence as compared to white children.[10] During the COVID-19 pandemic, our predominantly Black and Caribbean population suffered tremendous loss of life and livelihood. Additionally, we have seen an increase in violence within our community, This particular summer, the Kings County Emergency Department cared for more than 60 gunshot-related trauma cases in just one month. All of these patients were either black or LatinX.
Further, according to NYChealth.gov, black women in NYC are eight times more likely to die from pregnancy-related complications.[11] In 2019, the CDC reported that Black babies were more than twice as likely to die before their first birthday compared to white populations, even when statistically controlling for a mother’s income or education level.[12]
According to the Association of American Medical Colleges website in 2019, black people represent more than 13% of the patient population but only 6.2% of medical students.[13] Additionally, although Hispanic and Latino people represent more than 18% of the US population, only 5.3% of medical students are from these communities.[13] According to White Coats For Black Lives, in order to create a representative physician workforce, medical schools would need to admit classes consisting entirely of Black, Latinx, and Native American students for the next 10 years.[14] Notably, the majority of medical students in the continental USA come from white, affluent backgrounds of higher socioeconomic status. Not only are students from low socioeconomic status families underrepresented, but they are also more likely to leave medical school within the first two years.[15] This means that our current health care workforce does not represent the patient population, which creates cultural barriers to communication between providers and patients.
Fig 2. Comparison of race/ethnicity breakdown in US medical schools and in the United States population in 2018
This history and data beg this question from us as a medical community: What can we do to better serve our minority populations? The first step is to recognize your bias. While our first instinct in response to this may be defensiveness and shame, we must acknowledge that our biases may be inherent, and we cannot begin to unravel them without addressing them introspectively and educating ourselves on their undoing. Harvard University has produced an implicit bias survey, which providers can take to learn about their own inherent bias. The next step is to actively contribute towards a culture in our medical community that advocates for the dismantling of systemic racism in health care. This can begin with the creation of an infrastructure in health care institutions that is dedicated to addressing health care disparities, one that is already in motion at SUNY Downstate Health Sciences University. Two of our residents, Drs. Desai and Berland mobilized the administration, faculty, and residents to materialize their ideas and projects on advocacy, social justice, and systemic racism by leading a hospital-wide demonstration in June. Dr. Desai went on to reform the SUNY Downstate Diversity, Equity, and Inclusion Council into a centralized hospital-wide infrastructure composed of seven subcommittees led by residents and faculty – recruitment, mentorship and retention, social justice, inclusion, education, research, and community engagement. Emergency medicine residents such as Dr. Aurrocoechea have proceeded to create a curriculum in Social Emergency Medicine as part of our residency education, while Drs. Sim, Warshaw, and Cai have subsequently created a Social EM mini-fellowship to encourage more participation and education on these subjects. Drs. Sim and Warshaw are currently leading an initiative for community engagement for new interns.
These changes initiated by our EM residents are borne from a simple concept: Lack of equity and diversity in our health care workforce comes from lack of equity and diversity in our medical education. Racial inequality in health care has not only led to health care disparities but has also led to the development of deep distrust in our system among our minority populations. Deconstructing both requires not only passion but also patience and a methodical approach to systemic culture change. Much more work needs to be done, but it is important to educate yourself on the field, be an advocate for your patient and, most importantly, work on increasing the representation of people of color in medicine.
References
[1] Martin, M. (2008, January 10). End of Slave Trade Meant New Normal for America. Retrieved September 16, 2020, from https://www.npr.org/templates/story/story.php?storyId=17988106
[2] Sims J. The Story Of My Life. New York: Appleton and company; 1884.
[4] Tuskegee Study – Timeline – CDC – NCHHSTP. Cdc.gov. https://www.cdc.gov/tuskegee/timeline.htm Published 2020. Accessed September 16, 2020.
[5] Skloot R, Moss S. The Immortal Life Of Henrietta Lacks. New York: Broadway Books
[6] Butanis B. The Importance of HeLa Cells | Johns Hopkins Medicine. Hopkinsmedicine.org. https://www.hopkinsmedicine.org/henriettalacks/importance-of-hela-cells.html Published 2020. Accessed September 16, 2020.
[7] Nursing: A Concept-Based Approach To Learning, Volume I. 2nd ed. Pearson; 2020:161.
[8] Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci U S A. 2016;113(16):4296-4301. doi:10.1073/pnas.1516047113
[9] Guffey T, Yang PQ. Trust in Doctors: Are African Americans Less Likely to Trust Their Doctors Than White Americans? SAGE Open. October 2012. doi:10.1177/2158244012466092
[10] African American Health. Centers for Disease Control and Prevention. https://www.cdc.gov/vitalsigns/aahealth/index.html Published 2020. Accessed September 16, 2020.
[11] Howland RE, Angley M, Won SH, et al. Determinants of Severe Maternal Morbidity and Its Racial/Ethnic Disparities in New York City, 2008-2012. Matern Child Health J. 2019;23(3):346-355. doi:10.1007/s10995-018-2682-z
[12] Taylor J, Hamm K, Phadke S. Eliminating Racial Disparities in Maternal and Infant Mortality – Center for American Progress. Center for American Progress. https://www.americanprogress.org/issues/women/reports/2019/05/02/469186/eliminating-racial-disparities-maternal-infant-mortality/ Published 2020. Accessed September 30, 2020.
[13] Figure 13. Percentage of U.S. medical school graduates by race/ethnicity (alone), academic year 2018-2019. AAMC. https://www.aamc.org/data-reports/workforce/interactive-data/figure-13-percentage-us-medical-school-graduates-race/ethnicity-alone-academic-year-2018-2019 Published 2020. Accessed September 16, 2020.
[14] Smith T. White Coats 4 Black Lives peacefully presents U of U School of Medicine a list of change ‘demands’. abc4.com. https://www.abc4.com/news/salt-lake-city-protests/white-coats-4-black-lives-peacefully-presents-u-of-u-school-of-medicine-a-list-of-change-demands/ Published 2020. Accessed September 16, 2020.
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