Who decides what your doctor writes about you?

For anyone who's ever been called a "difficult patient."

Welcome to Chief Complaint! For those of you who are new, this newsletter features intermittent musings about medicine, gender, parenting, and body liberation — all from your friendly neighborhood primary care doc. I’m so happy you’re here.

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The other day in my primary care clinic, I encountered something I did not know how to handle: a patient who didn’t want me to write anything in his medical record.

I’m going to change the details for obvious reasons, but it went down kinda like this:

Me: Hi! This is Dr. Gordon, calling for your telehealth appointment. I don’t think we’ve ever met before, but you usually see my colleague as your primary care doctor. How can I help you?

Patient: I hear you typing.

Me: Yep, I’m just typing in your medical record, so we have information about what we discussed today for future reference. Don’t worry, I’m really good at typing while I listen to you!

Patient: I don’t want you to write anything down. I’m not going to tell you why I’m calling if you write anything in my chart.

Me: [Shocked into silence.] Ummm… I have to write down what we discuss for safety and legal reasons. It’s totally confidential, I promise. It’s protected by federal law.

Patient: I don’t believe that.

Me: Well, if I prescribe you a medication, I need to write what it was for, so it’s covered by your insurance. Can you just give me a general idea of what you want to talk about? I will read it back to you to make sure you agree with how I’m portraying the issue.

Patient: Stop it. I hear you typing.

Me: [Hands up, surrendering.] Okay! Not typing. Can you just tell me a little bit about what’s on your mind?

Patient: You swear you won’t write anything in my record?

Me: I mean, I have to write something.

Patient: I just know a lot of people who work at your hospital, and I don’t trust that they aren’t looking in my chart.

Me: Oh, I promise they aren’t! They track who goes in to every record, and you get fired if you are looking in a patient’s chart you aren’t supposed to. They take this really, really seriously.

Patient: I don’t believe it.

Me: Well, I’m worried I won’t be able to help you if you don’t tell me at least a little bit about what’s going on.

Patient: Can you just give me a medicine without writing it down?

Me: [Thinking… Do I even have a paper prescription pad?] Honestly, not really. Everything is done via the computer these days.

Patient: Stop typing!

And so on. We never really came to a resolution. The patient wouldn’t accept any prescription or treatment if there was anything written about it in the medical record. I wanted to document something — we had been going back and forth like this for almost twenty minutes.

We left it at an impasse: I wrote that the patient declined any documentation of his condition in his record, and he finished up the appointment without a diagnosis or treatment plan.

I genuinely wasn’t sure how I should have handled it. And I genuinely wasn’t sure what was really going on. Did he truly have so little trust in our confidentiality practices? Or was it some deeper psychological defense against verbalizing the issue he was experiencing? Did telehealth — talking on the phone, not face-to-face — make the situation better, or worse?

Photo by Mimi Thian on Unsplash

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Back in 2018, I wrote a piece for NPR about a new function that allowed patients to see everything that doctors wrote about them via the patient portal. At the time, it was quite novel. And doctors were freaked out about it!

I remember when the feature, called open notes, “went live” at my hospital system. There was endless chatter about how it might be dangerous for patients, how they might not understand all the information in there, how patients needed us doctors to explain it all — basically, a bunch of paternalistic garbage.

I think the real fear was this: Doctors were worried that patients would start to realize how the sausage gets made.

(See the classic Seinfeld clip below, where Elaine learns she has been labeled a “difficult” patient in her dermatologist’s medical record.)

I saw the light about open notes pretty quickly, once I learned in my reporting for NPR how much patients like it, and how there’s even some evidence it can improve their health. Open notes help them better understand the treatment plan, and next steps in testing.

And no wonder! The junk that prints out for them in the “patient handout” is pages upon pages of useless bloat, with instructions about adding vegetables to their diet and paragraphs of medical-legal “CYA” about vaccines.

Like doctors, patients know where the important part of the encounter is documented: the assessment and plan, not all the other stuff that clogs up the medical record. That’s where they can read about what actually happened. People are better at deciphering our chicken scratches than we give them credit for.

Open notes have changed the way I write about my patients, for the better. It’s forced me to start using more objective terminology, and to include the minimum amount of information necessary to take good care of the patient.

I no longer write “the patient refused the medication,” and instead write, “the patient declined the medication.” It takes exactly the same amount of time, and there’s a world of difference in how the patient is portrayed. I now write, “the patient was unable to get their labs drawn due to transportation/childcare/eldercare,” rather than, “patient noncompliant with lab draws.”

Writing about my patients in this new, more empathetic way has also changed my experience of caring for them. I no longer scurry away little judgmental tidbits about them in a secret, doctors-only diary. Writing with empathy helps me experience empathy. It’s powerful.

What about that patient who didn’t want anything written in his medical record? That scenario was the exception, not the rule, and most patients understand that having something in their record is part of the deal. It’s necessary for safety, for insurance coverage of medications, for legal reasons. I’m not allowed to take care of patients without keeping records on them.

But still, it did make me think about what an enormous amount of trust a patient places in us when they show up for an appointment. Not just trust that their medical issues will be taken seriously, that they will be assessed by a competent health care provider, that the next steps in the plan will be backed in science. There’s also trust about how they’re portrayed in their records, for eternity — or at least until Epic goes out of business.

I’ve written before about how I no longer use the term “obesity” in my patients’ medical records except in a very few number of circumstances. And “obesity” is only the tip of the iceberg. There are so many other stigmatizing diagnoses and pieces of information I’ve come across that have no place in a professional medical record and do not contribute to care.

For example: A patient who was on pre-exposure prophylaxis for HIV had “high risk homosexual behavior” as the diagnosis associated with the medication. What? I immediately switched it to “at risk for infection,” an imprecise alternative. (As far as I’m aware, there are no PrEP-specific ICD-10 diagnoses, but other docs, please tell me what you use!)

Another example: My sister-in-law just established care at a new hospital for her pregnancy. (Hooray for being an aunt, again!) She told me she was asked on her intake form, “At what age was your first sexual experience?” Again, what? Zero bearing on her care, 100% chance of making the patient feel alienated and judged.

The language doctors use in medical records has implications about the quality of care patients receive, bias they might face, and ultimately, their health outcomes.

A recent conversation on a clinician listserv I’m on made me add another dismal item to that list: criminal charges.

Documentation in the medical record can be used to press criminal charges for receiving services like abortion and gender-affirming care. It can be used to surveil patients around drug use. It can be used in immigration cases. It can be used by child protective services.

On this clinical listserv, a colleague shared a resource called Beyond Do No Harm, which made me start thinking about the myriad ways the medical record might be implicated in criminalization.

The Beyond Do No Harm Network is a group of US-based health care providers, public health workers, impacted community members, advocates, and organizers working across racial, gender, reproductive, migrant and disability justice, drug policy, sex worker, and anti-HIV criminalization movements to address the harm caused when health providers and institutions and public health researchers and institutions facilitate, participate in and support criminalization.

The guide for health care providers asks many provocative, important questions. Like these: Reflect on your experience as someone seeking care in the medical system - have you ever been asked questions that you felt were unnecessary for your care? Have you ever experienced judgment from health care providers which has stood in the way of getting the full care you needed?

What have your experiences with medical records been like? Have you ever been portrayed in a way that you felt was inaccurate?