Doctors Are More Likely to Describe Black Patients as Uncooperative, Studies Find

Medical records contain a plethora of information, from a patient’s diagnoses and treatments to marital status to drinking and exercise habits.

They also note whether a patient has followed medical advice. A health provider may add a line stating that the patient is “noncompliant” or “non-adherent,” signaling that the patient has been uncooperative and may exhibit problematic behaviors.

Two large new studies found that such terms, while not commonly used, are much more likely to appear in the medical records of Black patients than in those of other races.

“In medicine, we tend to label people in derogatory ways when we don’t truly ‘see’ them — when we don’t know them or understand them,” said Dr. Dean Schillinger, who directs the Center for Vulnerable Populations at San Francisco General Hospital and Trauma Center, and was not involved in the studies. “The process of labeling provides a convenient shortcut that leads some physicians to blame the patient for their illnesses.”

The first study, published in Health Affairs, found that Black patients were two and a half times as likely as white patients to have at least one negative descriptive term used in their electronic health record. The study was based on an analysis of more than 40,000 notes taken for 18,459 adult patients at a large urban medical center in Chicago between January 2019 and October 2020.

About 8 percent of all patients had one or more derogatory terms in their charts, the study found. The most common negative descriptive terms used in the records were “refused,” “not adherent,” “not compliant” and “agitated.”

“It’s not so much whether you should never use these words, but why are we applying these words with so much more frequency to Black patients?” said Michael Sun, the lead author of the study and a third-year medical school studentat the University of Chicago’s Pritzker School of Medicine. “Do we really believe Black patients are truly not compliant, so many more times than white patients?”

Rather than assume the patient is lacking in motivation or disengaged, he said, the medical team should inquire whether the patient is facing financial barriers, transportation difficulties or other obstacles to adhering to treatment, such as illiteracy or trouble with English.

The researchers found that outpatient clinic records were far less likely to contain the negative comments, compared with records from hospitals and emergency rooms, perhaps because outpatient providers have ongoing relationships with their patients and are more familiar with their circumstances.

Regardless of race, unmarried patients and those on government health plans like Medicare and Medicaid were more likely to have negative descriptors applied to them than married or privately insured patients. Patients in poor overall health, with several chronic underlying health problems, were also twice as likely to have negative adjectives in their medical records, the study found.

The second study, published in JAMA Network Open, analyzed the electronic health records of nearly 30,000 patients at a large urban academic medical center between January and December 2018. The study looked for what researchers called “stigmatizing language,” comparing the negative terms used to describe patients of different racial and ethnic backgrounds as well as those with three chronic diseases: diabetes, substance use disorders and chronic pain.

Overall, 2.5 percent of the notes contained terms like “nonadherence,” “noncompliance,” “failed” or “failure,” “refuses” or “refused,” and, on occasion, “combative” or “argumentative.” But while 2.6 percent of medical notes on white patients contained such terms, they were present in 3.15 percent of notes about Black patients.

Looking at some 8,700 notes about patients with diabetes, 6,100 notes about patients with substance use disorder and 5,100 notes about those with chronic pain, the researchers found that patients with diabetes — most of whom had type 2 diabetes, which is often associated with excess weight and called a “lifestyle” disease — were the most likely to be described in negative ways. Nearly 7 percent of patients with diabetes were said to be noncompliant with a treatment regimen, or to have “uncontrolled” disease, or to have “failed.”

A note might say that a patient “refused diabetic diet,” for example, or was “noncompliant with insulin regimen.” The more severe the disease, the more likely the patient was to have notes with negative descriptors.

In contrast, only 3.4 percent of patients with substance use disorders were described in negative terms, and fewer than 1 percent of patients with chronic pain had notes with negative descriptions.

The medical record is the first thing a hospital-based health provider sees, even before meeting the patient, said Dr. Gracie Himmelstein, the paper’s first author, and it creates a strong first impression.

“Before I even go meet a patient in the emergency room, the first thing I do is call up their record and read through the previous admission notes and get a sense of their history,” said Dr. Himmelstein, a resident physician at the University of California, Los Angeles, who carried out the research as part of her doctoral thesis at Princeton University. “I’m looking to see what their medical problems are, but as I do so, I’m also reading a narrative of their interactions with previous physicians.”

Instead of relying on vague and stigmatizing terms like “noncompliant,” physicians should try to understand why a patient isn’t cooperating and note specific reasons in the medical record, Dr. Himmelstein said.

“If the patient is, quote-unquote ‘noncompliant’ with the regimen, what is going on?” she said. “It’s hard for people to manage insulin. It can be prohibitively expensive. There can be issues around health literacy. We need to pinpoint where that problem is.”

The labels have consequences, Dr. Schillinger warned. While some of the notes convey critical information, the terms used can cloud the physician’s — and future clinicians’ —  judgment and decision-making, diminishing their compassion and empathy. And that may cause patients to lose trust in their providers.

“Patients whose physicians tend to judge, blame or vilify them are much less likely to have trust in their doctors, and in the medical system overall,” Dr. Schillinger said. “Having health care providers who are trustworthy — who earn their patients’ trust by not judging them unfairly — is critical to ensuring optimal health and eliminating health disparities.”