The Case for Medical Mistrust: Racism as Violence and the Importance of Trauma Informed Care
By Rachel Lee-Carey, Reality Team healthcare lead, and volunteer at New Life Community Health Center
The long pandemic experience.
As I’m writing this we are thirteen months into the Coronavirus pandemic. Thirteen months of social distancing, masking, Zoom calls, canceled vacations, avoiding close contact with family, and general anxiety driven exhaustion. But with the distribution of safe and effective vaccines we can see the light at the end of the tunnel.
Here in America we’ve had a few hiccups on the road to immunity. Some like distribution issues can be fixed with time and better administrative efforts. Other issues like vaccine hesitancy are more nuanced and harder to both understand and fix. For some people it’s easy to dismiss fears about the vaccine as conspiracy theory drivel, especially when the concerns feature sci-fi scenarios like microchipping and genetic modifications. But for many in the population especially minority groups medical distrust is common, and frankly it’s warranted.
A link between trauma and mistrust.
I’ve heard a consistent narrative of distrust from many of my friends and family when it comes to vaccination. Phrases like “I’m not letting them experiment on me,” and “why would I let them have so much control over my body,” are consistently tossed around whenever the topic of vaccination comes up.
These phrases were eerily similar to ones I’ve heard in the clinic where I work, but when I heard them before they weren’t about the vaccine. They were from patients who have undergone severe trauma.
So what is trauma?
According to the American Psychological Association, trauma is the emotional response someone has to an extremely negative event. People are quick to identify certain aspects of Post Traumatic Stress Disorder, like fear, paranoia and mistrust. However the effects of trauma are often more than psychological. It can have real physical effects that are detrimental to your health.
While we may understand and accept what trauma is and how it may manifest in individuals, we can often overlook certain causes of trauma. We can easily identify traumatic events like war, rape, violent attacks, abuse, and neglect. But sometimes we fail to identify the more invisible sources of trauma. Racism is one of those overlooked triggers.
Racism is a form of violence and abuse that is also a source of trauma. It’s a daily series of attacks ranging from microaggressions, daily abuses, systemic “othering”, to psychological and physical attacks. These experiences can cause the same trauma in its victims as other forms of abuse. What makes the violence of racism so insidious is that often the violence is not committed by an individual, but by institutions. In cases like these we can see institutions, like the medical community, propagating racial violence against people.
A lived experience of medical racism
To be completely clear, black and brown people have been, and continue to be, traumatized by racism in the medical system. One of the many horrors of slavery was the history of medical experimentation on the enslaved population.
James Marion Sims, who until a couple of years ago was praised as the father of gynecology, actually performed surgical procedures on enslaved women without anesthesia. Medical schools in the south often advertised the large population of slaves as the reason they were able to provide ample amounts of cadavers to dissect and display. In an attempt to justify slavery and inhumane experimentation, scientists and physicians often propagated myths about the biological differences between black people and white people. Some examples of these myths are that black people have “thicker skin or skulls, that their nervous system is less responsive, and diseases that were inherent to dark skin.”
The history of medical racism
The abuses did not stop with the abolition of slavery. In the 20th century the medical violence continued, often sponsored by the government. A well-known example of this is the Tuskegee experiments, a forty year-long experiment starting in 1932, that denied syphilis treatment to hundreds of black men, all the while telling them they were being treated for “bad blood.”
Another example of experimentation without consent in the black community is the case of Henrietta Lacks. In the 1950s doctors found out her cells could continue to live outside of her body. Scientists took her cells without her consent and to this day have continued to conduct research on them, despite her family’s protests.
Beginning in 1907 African American, Native American, and Puerto Rican women were targeted by eugenics laws that forced sterilization on them. Even today ICE detainees have accused the government of reviving this practice and sterilizing the women in the camps without their knowledge or consent.
Modern Medical Racism
This history of medical racism has had a severe impact on our current medical system. Studies have shown that the myths formed during the slavery era are still widely held in the medical community.
One study showed that more than half of a sample of white medical students and residents believed that black patients have thicker skin than their white counterparts. This often led them to rate the pain of black patients as lower than the pain of white patients, which in turn led to disparities in both treatment and outcomes.
Black people are more likely to be under treated for pain; they are prescribed pain medication at lower rates than white people despite having the same conditions. When they are prescribed pain medication, they are prescribed lower amounts. This attitude also extends to children. In a study of one million children with appendicitis, they found that black children were “were less likely to receive any pain medication for moderate pain and were less likely to receive opioids—the appropriate treatment—for severe pain.” The disparity in infant mortality rates between black and white children is even higher than it was during slavery and the maternal mortality rates for black and brown mothers is much higher than it is for white women. These disparities are often attributed to physician and medical bias.
Lessons from trauma informed care.
So, what do we do when the case for medical mistrust is ironclad? How can we hope to enact a widespread vaccination in the name of “public health” when the health of minorities has so often been overlooked?
It’s in situations like these where I can’t help but think that the entire medical system needs a course or two in trauma informed care.
What is Trauma Informed Care?
There are a myriad of ways to practice trauma informed care (TIC), but it generally boils down to three key concepts. “(1) realizing the prevalence of trauma; (2) recognizing how trauma affects all individuals involved with the program, organization, or system, including its own workforce; and (3) responding by putting this knowledge into practice” (SAMHSA).
What does this mean for any organization trying to practice TIC?
First we recognize that we have no way of knowing by just looking at a patient if they have experienced trauma; just like we don’t know which patients have communicable diseases. So we put on gloves with everyone, and we treat everyone as if they have experienced trauma.
We also have to recognize that every interaction we have with a patient from the receptionist to the doctor is a part of their experience with our organization as a whole, so all staff must be trained in trauma informed care protocols.
Above all else we strive to not re-traumatize the patient. This can be difficult because everyone responds to trauma in a different way and you don’t know what triggers they have. Despite that there are a few general ideas for how TIC can be implemented.
Put the patient in control.
The first step is taking our hands off the wheel and putting the patient in the driver seat of their care. Often patients with trauma feel stripped of control. We want to empower them to regain it by having them steer their own care. This means being communicative about procedures, extremely transparent about potential outcomes, and ultimately being able to accept when a patient does not want to be treated. It means giving control to the person who was harmed.
It may take time.
In the case of the current pandemic this relinquishing of control to the patient will have a direct effect on the language we use with them.
Instead of talking to them in terms of mandates and what you have to do, we use language that empowers them. Instead of saying “you are mandated to wear a mask,” or talking about the possible limits and punishments for not getting vaccinated, we can talk about them “exercising your power to protect your neighbor by wearing a mask and getting vaccinated.” We can express to them how they have a critical role in ending this pandemic. We also have to practice patience while we wait for people to be ready to trust the medical community enough to allow them access to their bodies.
In the case of the medical institution this new formation of trust is even harder because the solutions are being presented by the abuser: that’s a tough pill to swallow.