For years, many Black patients have mistrusted doctors and the healthcare system. How are physicians rebuilding that trust?
While on a road trip to Washington D.C. a few years ago, Earl Sewell blinked, and the road around him instantly blurred. The fast-moving cars and trucks on either side of his lane looked like a watercolor painting. He pulled to the shoulder and prayed until his vision cleared.
Upon returning to Chicago, Sewell’s unsettling visual episodes continued. When his blood work came back, his primary care physician diagnosed him with sudden-onset type 2 diabetes.
The treatment plan: Sewell would receive a prescription for the diabetes drug Metformin and return regularly for blood tests.
For more than two decades, Sewell had traveled from his home on Chicago’s South Side to his primary care physician on the opposite side of the city for his annual physical, tests, and follow-up care. When diagnosed with high blood pressure and high cholesterol, Sewell took the medications his physician prescribed.
Now, though, the communications professional told his doctor that he preferred to manage the diagnosis by improving his diet. His physician agreed that losing weight would help, but told Sewell that he would eventually have to take insulin to avoid losing a limb, and to reduce the risks of a heart attack, stroke, and organ failure.
“I trusted the man,” Sewell says. “I really liked him. But the vision of my future that was being painted was not one I agreed with. I needed someone who could be more of an ally, someone who believed in the medical research that showed type 2 diabetes could be reversed.”
Sewell is among a number of people of color who want to follow their doctor’s advice but don’t trust that they’re receiving quality medical care. More than half of 525 participants in a 2021 Deloitte Center for Health Solutions focus group reported a negative experience that resulted in lost trust in a healthcare provider. The majority of respondents identified as Black, followed by Hispanic, Asian, and Native American.
“We spoke with people who said they often didn’t feel respected by healthcare professionals or didn’t think health care professionals were actively listening when they described symptoms and experiences,” Heather Nelson, a senior manager at Deloitte Consulting LLP, wrote in a blog post describing the findings.
The roots of mistrust run deep
This research comes at a time when Centers for Disease Control and Prevention statistics show that Black Americans continue to experience much poorer health outcomes than white Americans. Numerous studies show that mistrust in the healthcare system has been one reason for this disparity.
The ambivalence that Sewell, Deloitte focus group participants, and others say they’ve felt from medical establishments grows out of decades of insults and injuries.
Take, for example, the infamous U.S. Public Health Service’s experiment conducted at the Tuskegee Institute from 1932 to 1972. In order to study how syphilis progressed, government researchers withheld penicillin from Black men with the disease. Stories of a family patriarch’s loss of life or limb due to inadequate care also have been passed down from one generation to the next.
“For my particular family there was trepidation when it came to practitioners because of a history within my family and the African American community of being experimented on,” Sewell says.
History aside, participants in the Deloitte research cited medical microaggressions as barriers to care.
Black patients often have to prepare for encounters with healthcare professionals in which doctors signal mistrust in the patient, says Nikki Montgomery, program and communications manager for Family Voices, a national organization that advocates for children with special healthcare needs.
To combat the perceived mistrust, Montgomery says Black patients “may change the way they speak. They may sit up and give better eye contact. They may be extra charming and charismatic. For those who have had the privilege of education and career, they may even add those details into healthcare encounters. They need to do this in order to get safe and adequate treatment.” She adds, “Those adaptations are often because they need to humanize themselves.”
Research on the language doctors use in patient medical records demonstrates what Montgomery has found through her work. Mary Catherine Beach, MD, MPH, a bioethicist at Johns Hopkins University, has studied that language. She found that doctors commonly expressed greater doubt of self-reported pain among Black patients than among white patients.
Beach and a team of researchers analyzed 9,251 notes written by 165 physicians about 3,374 patients. They found that notes written about Black patients had a greater number of words that cast doubt on patient symptoms.
For example, notes might document a patient encounter as “patient reports that the headache started yesterday,” instead of “the headache started yesterday.” Researchers also found discrediting verbs such as “claims”, “insists”, and “states” in patient records as well as irrelevant details that cast a negative image of the patient.
In Chicago, an analysis of more than 40,000 electronic health records of patients who received care at an academic medical center in the city from January 2019 to October 2020 found that Black patients had two and half times the adjusted odds of white patients to be described with words such as agitated, noncompliant, and challenging in their history and physical notes.
“All the time, I had clinicians, providers, nurses, even patients say, ‘You know, I knew this. This happens all the time. We see this on a day-to-day basis,’” says study author and fourth-year University of Chicago medical student Michael Sun.
“All our study served to do and what I, what we, really sought to do, was just to make irrefutable proof for the medical community, the scientific community, that says the things that we say are happening, that our patients say are happening, are as real and as prevalent as what we’ve been trying to tell people,” Sun says.
Sewell suspected that the same implicit bias impacted the treatment plans his doctor offered.
“He saw me as a statistic,” Sewell says.
Building trust starts with providers
Researchers Beach and Sun are calling for more studies on how physician observations in patient notes impact trust between clinicians and patients.
In the year since Sun’s research published, the work has gained traction among medical educators.
“I was encouraged by the outreach from medical educators from across the country, or students who were interested in bringing the study, or the lessons from the study, to their institutions,” Sun says.
Advocates say medical establishments must do more to improve trust.
“The labor of being believed and believable has generally fallen to Black patients,” Montgomery says. “It’s important for providers to examine those impulses to disbelieve.”
Leveraging its impact with healthcare executives, Deloitte is engaging organizations to find ways to build trust. The group conducted interviews with health equity executives, advocates, and academic experts in that 2021 study to brainstorm enterprise-level efforts.
Ideas included creating patient advisory councils, encouraging patients to bring an advocate to appointments, and providing a platform for patients to submit feedback after a negative experience with a physician.
Otherwise a patient may feel the need to embark upon a different path, as Sewell did. Undaunted by the long list of practitioners within his health plan’s network, Sewell searched for a new primary care doctor.
“I picked some randomly, and I called a couple of people for a recommendation and asked, ‘Who is your general practitioner, and would you recommend them?’ Then I interviewed them all — I had never even thought to do that before.”
In the initial conversations with his new doctor, Sewell established his goals.
“I said, ‘I understand that type 2 diabetes is reversible. I’m the type of person who will do everything humanly possible to make lifestyle changes and do it. Would you help me reverse this?’”
The new doctor told Sewell: “Absolutely. It’s a tough journey, but you can do it.”
Since being diagnosed months earlier, Sewell had cleaned out his refrigerator, started working out, and began eating meat-free on Mondays. Still, his average blood sugar level only dropped slightly.
The new doctor reviewed the medications Sewell was on and took him off half of them.
“He said, ‘Based on what you’re doing, you don’t need this, this, or this. Let’s just put you on this one pill and see how it goes,’” Sewell recalls.
Over the next three years, Sewell worked with his new doctor to make changes needed to reverse type 2 diabetes, such as switching to a vegan diet and staying consistent with physical activity. Now 55 pounds lighter, Sewell maintains blood sugar levels that put him well below a diabetes diagnosis. The lifestyle changes he has made also helped lower his high blood pressure and high cholesterol.
A few visits into their relationship, Sewell’s new doctor did something that left Sewell shocked.
“He said ‘I see you have been on statins for high cholesterol for a very long time — over 20 years. Have you ever had a scan done of your chest to see if there are any blockages, to prevent a heart attack before it happens?’” Sewell says. He hadn’t.
The doctor then recommended that Sewell get a chest x-ray. If the scan revealed any blockages, an angioplasty could prevent a heart attack before it happened.
“That built up a lot of good trust between he and I,” Sewell says. My old practitioner wanted to treat symptoms. The new practitioner said, ‘Let’s get to the root and heal it.’”
As for the 20-year long relationship with his previous practitioner, it came to an abrupt end.
“Zilch,” Sewell says, describing the communication he has had since switching physicians. His former practitioner has never followed up to inquire about his well-being. “That speaks for itself.”
Originally published in the Spring/Summer 2023 print issue.
A native of Chicago’s Marquette Park neighborhood on the southwest side, Cassie M. Chew operates as a freelance healthcare policy reporter based in D.C.
