By Darius Tahir | KHN
David Confer, a bicyclist and an audio technician, told his doctor he “used to be Ph.D. level” during a 2019 appointment in Washington, D.C. Confer, then 50, was speaking figuratively: He was experiencing brain fog—a symptom of his liver problems. But did his doctor take him seriously? Now, after his death, Confer’s partner, Cate Cohen, doesn’t think so.
Confer, who was Black, had been diagnosed with non-Hodgkin lymphoma two years before. His prognosis was positive. But during chemotherapy, his symptoms—brain fog, vomiting, back pain—suggested trouble with his liver, and he was later diagnosed with cirrhosis. He died in 2020, unable to secure a transplant. Throughout, Cohen, now 45, felt her partner’s clinicians didn’t listen closely to him and had written him off.
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That feeling crystallized once she read Confer’s records. The doctor described Confer’s fuzziness and then quoted his Ph.D. analogy. To Cohen, the language was dismissive, as if the doctor didn’t take Confer at his word. It reflected, she thought, a belief that he was likely to be noncompliant with his care—that he was a bad candidate for a liver transplant and would waste the donated organ.
For its part, MedStar Georgetown, where Confer received care, declined to comment on specific cases. But spokesperson Lisa Clough said the medical center considers a variety of factors for transplantation, including “compliance with medical therapy, health of both individuals, blood type, comorbidities, ability to care for themselves and be stable, and post-transplant social support system.” Not all potential recipients and donors meet those criteria, Clough said.
Doctors often send signals of their appraisals of patients’ personas. Researchers are increasingly finding that doctors can transmit prejudice under the guise of objective descriptions. Clinicians who later read those purportedly objective descriptions can be misled and deliver substandard care.
Discrimination in health care is “the secret, or silent, poison that taints interactions between providers and patients before, during, after the medical encounter,” said Dayna Bowen Matthew, dean of George Washington University’s law school and an expert in civil rights law and disparities in health care.
Bias can be seen in the way doctors speak during rounds. Some patients, Matthew said, are described simply by their conditions. Others are characterized by terms that communicate more about their social status or character than their health and what’s needed to address their symptoms. For example, a patient could be described as an “80-year-old nice Black gentleman.” Doctors mention that patients look well-dressed or that someone is a laborer or homeless.
The stereotypes that can find their way into patients’ records sometimes help determine the level of care patients receive. Are they spoken to as equals? Will they get the best, or merely the cheapest, treatment? Bias is “pervasive” and “causally related to inferior health outcomes, period,” Matthew said.
Narrow or prejudiced thinking is simple to write down and easy to copy and paste over and over. Descriptions such as “difficult” and “disruptive” can become hard to escape. Once so labeled, patients can experience “downstream effects,” said Dr. Hardeep Singh, an expert in misdiagnosis who works at the Michael E. DeBakey Veterans Affairs Medical Center in Houston. He estimates misdiagnosis affects 12 million patients a year. Conveying bias can be as simple as a pair of quotation marks. One team of researchers found that Black patients, in particular, were quoted in their records more frequently than other patients when physicians were characterizing their symptoms or health issues. The quotation mark patterns detected by researchers could be a sign of disrespect, used to communicate irony or sarcasm to future clinical readers. Among the types of phrases the researchers spotlighted were colloquial language or statements made in Black or ethnic slang.
“Black patients may be subject to systematic bias in physicians’ perceptions of their credibility,” the authors of the paper wrote.
That’s just one study in an incoming tide focused on the variations in the language that clinicians use to describe patients of different races and genders. In many ways, the research is just catching up to what patients and doctors knew already, that discrimination can be conveyed and furthered by partial accounts.
Confer’s MedStar records, Cohen thought, were pockmarked with partial accounts—notes that included only a fraction of the full picture of his life and circumstances.
Cohen pointed to a write-up of a psychosocial evaluation, used to assess a patient’s readiness for a transplant. The evaluation stated that Confer drank a 12-pack of beer and perhaps as much as a pint of whiskey daily. But Confer had quit drinking after starting chemotherapy and had been only a social drinker before, Cohen said. It was “wildly inaccurate,” Cohen said.
David Confer and Cate Cohen in summer 2016 visiting the Outer Banks of North Carolina. Throughout Confer’s battle with non-Hodgkin lymphoma, Cohen said, she felt her partner’s clinicians didn’t listen closely to him and had written him off. Confer died in 2020, unable to secure a liver transplant.
Cate Cohen“No matter what he did, that initial inaccurate description of the volume he consumed seemed to follow through his records,” she said. Physicians frequently see a harsh tone in referrals from other programs, said Dr. John Fung, a transplant doctor at the University of Chicago who advised Cohen but didn’t review Confer’s records. “They kind of blame the patient for things that happen, not really giving credit for circumstances,” he said. But, he continued, those circumstances are important—looking beyond them, without bias, and at the patient himself or herself can result in successful transplants.
The History of One’s Medical History
That doctors pass private judgments on their patients has been a source of nervous humor for years. In an episode of the sitcom “Seinfeld,” Elaine Benes discovers that a doctor had condescendingly written that she was “difficult” in her file. When she asked about it, the doctor promised to erase it. But it was written in pen.
The jokes reflect long-standing conflicts between patients and doctors. In the 1970s, campaigners pushed doctors to open up records to patients and to use less stereotyping language about the people they treated.
Nevertheless, doctors’ notes historically have had a “stilted vocabulary,” said Dr. Leonor Fernandez, an internist and researcher at Beth Israel Deaconess Medical Center in Boston. Patients are often described as “denying” facts about their health, she said, as if they’re not reliable narrators of their conditions.
One doubting doctor’s judgment can alter the course of care for years. When she visited her doctor for kidney stones early in her life, “he was very dismissive about it,” recalled Melina Oien, who now lives in Tacoma, Washington. Afterward, when she sought care in the military health care system, providers—whom Oien presumed had read her history—assumed that her complaints were psychosomatic and that she was seeking drugs.
“Every time I had an appointment in that system—there’s that tone, that feel. It creates that sense of dread,” she said. “You know the doctor has read the records and has formed an opinion of who you are, what you’re looking for.”
When Oien left military care in 2013, her paper records didn’t follow her. Nor did those assumptions.
New Technology — Same Biases?
While Oien could leave her problems behind, the health system’s shift to electronic medical records and the data-sharing it encourages can intensify misconceptions. It’s easier than ever to maintain stale records, rife with false impressions or misreads, and to share or duplicate them with the click of a button.
“This thing perpetuates,” Singh said. When his team reviewed records of misdiagnosed cases, he found them full of identical notes. “It gets copy-pasted without freshness of thinking,” he said.
Research has found that misdiagnosis disproportionately happens to patients whom doctors have labeled as “difficult” in their electronic health record. Singh cited a pair of studies that presented hypothetical scenarios to doctors.
In the first study, participants reviewed two sets of notes, one in which the patient was described simply by her symptoms and a second in which descriptions of disruptive or difficult behaviors had been added. Diagnostic accuracy dropped with the difficult patients.
The second study assessed treatment decisions and found that medical students and residents were less likely to prescribe pain medications to patients whose records included stigmatizing language.
Digital records can also display prejudice in handy formats. A 2016 paper in JAMA discussed a small example: an unnamed digital record system that affixed an airplane logo to some patients to indicate that they were, in medical parlance, “frequent flyers.” That’s a pejorative term for patients who need plenty of care or are looking for medications.
But even as tech might amplify these problems, it can also expose them. Digitized medical records are easily shared—and not merely with fellow doctors, but also with patients.
Since the ’90s, patients have had the right to request their records, and doctors’ offices can charge only reasonable fees to cover the cost of clerical work. Penalties against practices or hospitals that failed to produce records were rarely assessed—at least until the Trump administration, when Roger Severino, previously known as a socially conservative champion of religious freedom, took the helm of the U.S. Department of Health and Human Services’ Office for Civil Rights.
During Severino’s tenure, the office assessed a spate of monetary fines against some practices. The complaints mostly came from higher-income people, Severino said, citing his own difficulties getting medical records. “I can only imagine how much harder it often is for people with less means and education,” he said.
Patients can now read the notes—the doctors’ descriptions of their conditions and treatments—because of 2016 legislation. The bill nationalized policies that had started earlier in the decade, in Boston, because of an organization called OpenNotes.
For most patients, most of the time, opening record notes has been beneficial. “By and large, patients wanted to have access to the notes,” said Fernandez, who has helped study and roll out the program. “They felt more in control of their health care. They felt they understood things better.” Studies suggest that open notes lead to increased compliance, as patients say they’re more likely to take medicines.
Conflicts Ahead?
But there’s also a darker side to opening records: if patients find something they don’t like. Fernandez’s research, focusing on some early hospital adopters, has found that slightly more than 1 in 10 patients report being offended by what they find in their notes.
And the wave of computer-driven research focusing on patterns of language has similarly found low but significant numbers of discriminatory descriptions in notes. A study published in the journal Health Affairs found negative descriptors in nearly 1 in 10 records. Another team found stigmatizing language in 2.5 percent of records.
Patients can also compare what happened in a visit with what was recorded. They can see what was really on doctors’ minds.
Oien, who has become a patient advocate since moving on from the military health care system, recalled an incident in which a client fainted while getting a drug infusion—treatments for thin skin, low iron, esophageal tears, and gastrointestinal conditions—and needed to be taken to the emergency room. Afterward, the patient visited a cardiologist. The cardiologist, who hadn’t seen her previously, was “very verbally professional,” Oien said. But what he wrote in the note—a story based on her ER visit—was very different. “Ninety percent of the record was about her quote-unquote drug use,” Oien said, noting that it’s rare to see the connection between a false belief about a patient and the person’s future care.
Spotting those contradictions will become easier now. “People are going to say, ‘The doc said what?’” predicted Singh.
But many patients—even ones with wealth and social standing—may be reluctant to talk to their doctors about errors or bias. Fernandez, the OpenNotes pioneer, didn’t. After one visit, she saw a physical exam listed on her record when none had occurred.
“I did not raise that to that clinician. It's really hard to raise things like that,” she said. “You're afraid they won't like you and won't take good care of you anymore.”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
