Broken Records: Stigmatizing Language in Medical Histories May Follow Patients for Years

Illustration by Mikel Casal

Published in Dome - Dome July/August 2018

The notes in Mr. R’s medical record reveal a lot about him.

Bouts of severe pain stemming from sickle cell disease have occasionally sent the 28-year-old man to a hospital emergency room. The notes say that he suffers from chronic hip pain and needs a wheelchair to get around.

But Mr. R’s records include much more than such medically relevant details. For starters, they imply that he uses the emergency room as a source to feed an opioid addiction.

“He is narcotic-dependent and in our emergency department frequently,” read the notes from Mr. R’s physician.

While this story is common, neither Mr. R nor his physician is real. They are the hypothetical creation of Johns Hopkins professor of medicine Mary Catherine Beach and her research team. Their study about the use of stigmatizing language in medical records, and the effects it can have on patient care, was published in The Journal of General Internal Medicine in May.

The narrative notes detailing Mr. R’s fictional visit to the emergency department are designed to determine whether the language and descriptions used in patient records can perpetuate bias among physicians. In the Johns Hopkins study, more than 400 physicians in training — both medical students and residents — were presented with one of two chart notes about the fictional Mr. R.

While both hypothetical chart notes contained medically identical information, one used neutral language to describe the patient and his condition and the other contained nonessential language that implied various value judgments. Study participants were asked to choose a treatment plan for Mr. R based on the notes they received.

According to the study, when physicians read notes and descriptions from previous medical visits, the language used may influence how they regard that patient, as well as how aggressively they manage the person’s pain. 

Physicians in training who were given the stigmatizing patient chart notes were significantly more likely to have a negative attitude toward the patient than those who read the chart containing more neutral language.

“This record may be the only source of information a new clinician has about some patients,” says Beach, who holds a joint appointment in health, behavior and society at the Johns Hopkins Bloomberg School of Public Health. “We have to question the assumption that the medical records are always objective.”

A Powerful Record

Every patient visit to a clinician is documented in a medical record, which becomes a comprehensive collection of facts and impressions of a person’s health history. Health care providers depend on this detailed information to help them make decisions about the patient’s health.

In addition to specifics such as vital signs, allergies and prescribed medications, the record contains narrative descriptions of patient encounters, written by physicians and other health care providers.

Imagine reading this stigmatizing note: “Yesterday, Mr. R was hanging out with friends outside McDonald’s where he wheeled himself around more than usual and got dehydrated due to the heat. The pain has not been helped by any of the narcotic medications he says he has already taken. He appears to be in distress. His girlfriend is lying on the bed with shoes on and requests a bus token to go home.”

The neutral note version of the same scenario reads that Mr. R. “is in obvious distress,” rather than appearing to be in distress. It says his girlfriend is “by his side, but will need to go home soon,” making no mention of medically extraneous information such as shoes on the bed or bus tokens.

The study found that such descriptions affected treatment plans as well as attitudes: The physicians in training who read the stigmatizing chart note took a less aggressive approach to managing Mr. R’s pain.

Even those who recognized the language as stigmatizing were more likely to treat Mr. R’s pain less aggressively.

“There is growing evidence that the language used to communicate in health care reflects and influences clinician attitudes toward their patients,” says Anna Goddu, a Johns Hopkins University School of Medicine student who co-authored the study. “Medical records are an important and overlooked pathway by which bias can be propagated from one clinician to another, further entrenching health care disparities.”

Beach adds that, in the study, medical residents had more negative attitudes toward the hypothetical patient than did medical students.

“Attitudes seem to become more negative as trainees progress,” she says. “It may be that trainees are influenced by negative attitudes and behaviors among their peers and seniors in the clinical setting.”

Participants who identified as black or African-American generally had more positive attitudes toward the patient — a finding affirmed by other studies, Beach says.

Goddu hopes this study will increase awareness about the importance of using neutral, nonjudgmental language in patient narratives.

“When prompted, the participants seemed able to reflect on how the words used in the chart notes communicated respect and empathy for the patient,” she says. “To us, this seems like a promising point of intervention. I hope our study makes clinicians think twice before including certain, nonessential points about a patient’s history or demeanor in the medical record.”