Your doctor is writing rude things about you

Photo by National Cancer Institute on Unsplash

I read this Kaiser Health News piece about doctors using stigmatizing words to describe their patients in their charts, and, well, I felt immediately implicated.

Let me explain.

The piece — which I read in print in my local newspaper, the Philadelphia Inquirer — does a really nice job humanizing the complex issue of biased language in the electronic medical record. It focuses on a recent study in JAMA Network Open, which used natural language processing to identify stigmatizing terminology written in notes about patients.

In findings that were unsettling but perhaps unsurprising, the authors found that doctors and nurses were more likely to use stigmatizing language about Black patients.

The KHN piece about the study featured a heartbreaking story of a Black patient experiencing brain fog, who told his doctor he “used to be PhD level” when it came to thinking and communicating clearly. His worsening confusion was a sign of liver failure, but his partner didn’t think they were taking him seriously.

His partner told KHN that the fact that his doctor put the phrase “used to be PhD level” in his chart was a snarky mockery of the patient, evidence they were dismissive of his symptoms. He passed away about a year later.

The story sent chills down my spine, both because his untimely death was tragic, but also because I frequently add in quotes just like that one to the notes I write about my patients. I do it because it seems better to tell the patient’s story in their own words — it helps bring them to life, to explain their illness on their own terms. The patient notes I write are littered with quotes just like that one.

But does the use of patients’ own words make them feel disrespected? In a medical record, which words are stigmatizing, and which words help lift up a patient’s lived experience? Which words help us understand our patients as whole people, and which words diminish them?

The authors of the JAMA paper had a very specific list, which they plugged into a computer program and scanned for in tens of thousands of patient charts.

Some of the terms, I agreed, were unequivocally terrible. They imply skepticism, that patients are somehow “unreliable” and not to be trusted. They are vague and usually do not have a specific, medical meaning. Here are a few from the study that I always, always avoid when I’m writing about my own patients:

• Malingering

• Junkie

• Fake

• Addict

• Drug-seeking

• Difficult patient

• Degenerate

No brainer. These words do not have a role in the electronic medical record.

There are some words on the list that have clear alternatives. I try to write, for example, “the patient declines a flu shot,” rather than “the patient refuses a flu shot.” The “patient has not been taking medications regularly because they’re too expensive,” rather than “the patient is noncompliant.”

Subtle choices — a patient “insists,” or “claims,” or “demands” — have big impacts.

But there’s some evidence that there can be a disconnect from the way doctors are trained to write their notes and what our patients perceive.

A fascinating 2021 paper in the Journal of General Internal Medicine surveyed patients who had access to their medical records through a “patient portal,” i.e. one of those apps you can use to message your doctor, receive test results, etc. (By the way, I’m 100% on board with sharing notes with patients, especially after writing this piece for NPR on the topic and understanding the positive effects.)

Almost 10% of patients felt judged or offended by something they read in the notes.

Some of the examples were obvious. Don’t comment on a patient being “well-groomed” or “delightful” or “pleasant.” I still see those words all the time in the notes I read, and it doesn’t add much to the discussion and has a high potential for transmitting bias.

Others were trickier. Some patients were offended by being called a “former smoker,” a term that is absolutely relevant to care: they may need lung cancer screening, or medicines to prevent heart disease. Is there a better term? Someone who used to use cigarettes? Past medical history of cigarette nicotine dependence? Perhaps.

The words “obesity” or “obese” were also frequently thought to be stigmatizing, for example. I tend to agree — I try hard to avoid them, I find BMI doesn’t usually have much of a place in my clinical decision-making, and the terms can be offensive. But my electronic medical record, for example, sends me zillions of alerts encouraging me to add “obesity” to my patients’ notes, because it makes our patients appear more complex for documentation purposes and, the idea is, will get our health care system more money from insurance companies. I still avoid those words, but I’m up against a big opponent.

In the JGIM survey, patients often felt betrayed by seeing information they perceived as confidential as being listed in the chart.

I’ve had patients complain about this to me before, and it’s tricky. I like to add in a note about their job, or who lives at home with them, or what they do for fun, because it helps me remember them better, helps me remember the human being behind the list of diagnoses in the computer. Sometimes information that could be considered stigmatizing is genuinely relevant to their care.

Sometimes this upsets patients, because they don’t want another doctor to know the same details they tell me. I’ve learned to ask consent before adding information that doesn’t seem immediately clinically relevant.

But sometimes, that extra step — confirming that yes, this will be in their record, yes, their cardiologist will be able to see it — feels like one more thing to add to my list as I type and talk and examine and diagnose and counsel, all in a 15 minute appointment.

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What do you think? Have you ever read something your doctor wrote about you? Did you agree, or did you think it was unfair?