Building Trust after a History of Systemic Abuse

By Naeemah A. Munir, MPH

A physician draws blood during the Tuskegee Syphilis Experiment, c. 1953

I. Blood Transfusion

As the clock approached noon in the internal medicine resident workroom at Hillcrest Hospital, I eagerly awaited to hear a stimulating lunch talk, and to enjoy the free food!  Before lunch, my intern asked if I wanted to observe him consent a patient for blood transfusion. Although I wasn’t directly following the patient, I joined my intern for the consent.

A typical consenting process may take 1-5 minutes, but this was not a typical patient interaction.  The patient was in his mid-60s, with stage-4 colon cancer, and had been  transferred from a skilled nursing facility (SNF) to the emergency department for an upper respiratory infection.  The results of the respiratory pathogen nucleic acid amplification test indicated that the patient had a parainfluenza infection that was spread by droplets during coughing or sneezing, and thus was placed on droplet isolation precautions.  He was confined to a single bed, enclosed by glass doors, and healthcare workers were required to wear gowns and masks upon entry to his room.

During the consent process, the patient began to express his concerns regarding his hospital stay and questioned his placement in confinement. My intern patiently and empathetically addressed the patient’s concerns, which mainly surrounded his placement in  a SNF after being in confinement.  As a 3rd year student, I quietly stood in the corner and observed the 30 minute tense conversation.  From my observations, the patient felt trapped, caged, like he was being experimented on; he was not aware that his infection required this level of confinement.

After my intern had addressed his concerns and educated him on the plan of care, we reflected on the encounter and thought of ways to ensure that the patient felt cared for and aware of the continually evolving plan of care and discharge placement.  I concluded that the patient had developed a mistrust of everyone involved, healthcare providers as well the healthcare system in general.

The patient’s terminal condition, lack of patient autonomy during droplet precautions, and the rapid progression of care definitely contributed to the patient’s apprehension.  However, although we aren’t certain that race played a role in this scenario, we would be remiss not to acknowledge the history of deceit and experimentation that certain populations have experienced. The patient was African American.

II. Beyond Tuskegee

“It is a mistake to attribute African Americans’ medical reluctance to simple fear generated by Tuskegee Syphilis Study, because this study is not an aberration that single-handedly transformed African American perceptions of the health-care system.  The study is part of a pattern of experimental abuse, and many African Americans understand it as such, because a rich oral tradition has sustained remembrances of pain, abuse, and humiliation at the hands of physicians.” (1)   

Everyone knows about Tuskegee, right?  You may have learned about it during a medical humanities class in college or if you conducted human subjects research and paid attention to the online CITI training.  But in medical school, we do not have any formal training on the topic or other instances of unethical coercion of physicians; nor do we learn how the rippling effects of this recent history influence our relationships with patients of color.

I recently learned more about the Tuskegee/Syphilis Experiment, when I was reading Medical Apartheid by Harriet Washington.  The book provides a detailed historical account of the interaction of the health care delivery system and people of color.  Before Tuskegee, during the antebellum period, Black slaves were used as clinical material for physician researchers.  They were sold, kidnapped, and murdered, and their graves exhumed to supply medical schools with clinical material to further medicine.  Physicians such as Dr. J. Marion Sims withheld known and available anesthetics from Black patients while he tested gynecological surgical procedures.  When Sims perfected the vesicovaginal fistula repair, he administered anesthetics to White women. (1)

The Tuskegee Syphilis Study is the longest and the most infamous- but hardly the worst- experimental abuse of African Americans. It has been eclipsed in both numbers and egregiousness by other abusive medical studies.” (1)  

Such acts include the eugenics nature of the development of Planned Parenthood, providing or coercing minority and low-income individuals to receive contraception in order to better the American population by decreasing the Black population.  In the 1970s, many Blacks believed birth control to be a government ploy to eradicate blacks, comparing it to genocide.  Or in the 1990s, when a research institute received ethics review approval from Johns Hopkins University to evaluate cheaper lead-abatement techniques in low-income, minority housing units. Although the information provided to parents implied that the study was protecting children from lead, the researchers encouraged landlords to rent known lead apartments to families with young children.  Some children’s blood-lead levels increased fourfold during the study and researchers withheld this information from parents. (1)

Why is this history relevant today and to this patient interaction?   Because, as Washington stated, these atrocities are a pattern.  The pattern existed in the mid 19th century, when a physician decided to amputate a slave girl’s leg without considering other conservative treatments, as though the decision to amputate should be weighed differently according to a person’s race and class. (1)   And the pattern exists today: Blacks are two- to four-times more likely to receive limb amputation compared to whites–independent of comorbidities and insurance status–and are less likely to receive revascularization or wound debridement prior to amputation. (2)

III. Medical Mistrust

The physician-patient relationship may be compromised when medical mistrust is present.  When patients have mistrust they may feel uncomfortable in health care settings, fearful of health care professionals, doubtful of the intentions of diagnosis and treatment.  Individuals from communities of color that have been historically marginalized typically exhibit higher rates of medical mistrust. Current research has demonstrated that the influence of medical mistrust materializes in perceptions of provider communication regarding medication adherence and uptake of preventive services such as vaccinations and cancer screenings.

Among diabetic patients, individuals with greater mistrust had worse perceptions of provider communication. (3)   Mistrust predicted lower medication adherence among African American men living with HIV. (4)   Black Americans are more likely to go to emergency departments than outpatient clinics for primary care, compared to White counterparts. Mistrust accounted for racial differences in primary  source of care (emergency department vs. primary care clinic) between African-Americans and whites.5   Medical mistrust has also been studied among college-aged, racial and ethnic minority women.  Women without established primary care physicians and women who reported difficulty communicating with providers had higher mistrust scores.  Additionally, women who had not received the HPV vaccine had higher rates of mistrust compared to vaccinated counterparts. (6)

IV. Conclusion

As I reflect upon this patient’s interaction and the medical history of experimentation and abuse, I wonder what role, if any, medical mistrust played. A recent meta-analysis demonstrated that the majority of quantitative studies found negative associations between higher rates of mistrust and lower colon cancer screenings rates.  Additionally, among African American men, fear of experimentation and intrusiveness of screening methods were unique themes regarding mistrust and colorectal cancer screening literature. (7)   Without trusting relationships between physician and patient, patient interactions can be very frustrating and may contribute to further bias among providers towards ‘difficult’ or non-adherent patients.  What are medical schools doing today to address the persistent ripples of our profession’s past?   Conclusions from the majority of mistrust literature call for cultural competency training and policies to create equitable and safe spaces for African-Americans.  But does our cultural humility training include historical medical mistrust and how it influences health care delivery and outcomes among minority populations? How can we regain the trust of those that we have wronged?

UCSD SNMA Black History Month Movie/Reading List