Is your medical record being used against you?
Criminalizing patients for what's written in their charts
Welcome to Chief Complaint! For those of you who are new, this newsletter features intermittent musings about medicine, gender, parenting, and body justice — all from your friendly neighborhood primary care doc. I’m so happy you’re here.
“Do you have to write that in my record?” my patient asked the other day.
She was looking over my shoulder at the computer, where I clicked away as we finished up her visit.
She was pointing at “Gender dysphoria.” F64.9, according to the ICD-10. I paused my clicking.
“Um, no, I guess not,” I told her. “But we’ve used it before. Did something change?”
“I just don’t really like it,” she said.
“It’s not meant to be stigmatizing,” I said, brightly. (Note to self: Maybe come on a little less strong, next time.) “It helps get your meds covered by insurance.”
“I know,” she said, looking down. “It doesn’t offend me, or anything. I do have gender dysphoria. I’m just —” She stopped. “I’m just worried it might cause problems if someone saw my record.”
I turned to face her. “Tell me more about what’s on your mind.”
“Just everything that’s going on with the government.” She was looking down at her lap, methodically shredding a tissue. “Trying to make it illegal to be trans. What if somebody, like, came after me because of my medical record?”
“Yeah,” I said, slowly. “I hope that doesn’t happen.”
When I first started medical school, I saw what I wrote in the medical record as a way for my professors to assess my intelligence. I was quite literally graded on the notes I wrote. Did I think of enough rare diagnoses? And did my plan for testing and treatment reflect all the esoteric things that could be going on with my patient?
Even beyond the number of rare conditions I could come up with, I felt like documenting a comprehensive social history was a way to demonstrate my compassion and communication skills. If I could draw out a difficult story from my patient’s childhood, or I had learned that my patient had once experienced homelessness or had used drugs, writing it in the record “gave me credit” for being the kind of student who was skilled enough to learn those sensitive facts.
Over time, no longer in training, I learned to stop thinking of the medical record as being a way that I was being judged and instead started to think of it as a tool for communication.
Were my notes readable? Was my thinking clear? Would other doctors and nurses understand why I had done what I had done? It was a relief, in many ways, to cut back on the lengthy prose and obscure differential diagnoses. Note-writing was no longer a homework assignment. It served a clear purpose for me to do my job. Still, that doesn’t mean that my notes these days read like Hemingway.
I still like to include lots of personal details. These can range from the mundane (my patient works a desk job, which might explain his debilitating back pain) to the stigmatizing, like an episode of homelessness or drug use. I write down the names of their dogs and their kids so I can remember them the next time the patient comes in. I genuinely believe that the more I know about my patients, the better care I take of them.
It’s illuminating — and, I would argue, medically relevant — to know that my patient has a highly unusual hobby like sword juggling or breeding iguanas. It’s also relevant to know that my patient has no hobbies at all, and they spend their time working or at home, alone, watching TV and waiting for the day to end. (I can’t tell you how many people don’t know how to answer when I ask, at almost every new patient visit, “What do you do for fun?”)
Beyond my own borderline-pathologic love of human stories, I’m also under enormous pressure, from a variety of sources, to keep adding more information to my notes.
“If you don’t document it, it didn’t happen,” the saying goes. More is always more when it comes to the electronic medical record. I write thousands of words a day. I spend more hours looking at this software than I do gazing at my own husband or child.
All this writing serves many purposes — the least of which is effective care of patients.
Documentation is used to justify higher levels of billing, so we can make more money for each visit. (I wrote here about some of the pressure I face to include “obesity” as a diagnosis, for example.)
It’s also a tool to protect from liability. If we have a difficult interaction with a patient or if a patient gets upset, “Document, document, document,” we’re told. If a patient declines a recommended treatment plan, “Document, document, document.”
The patient record becomes a unilateral narrative of the health care system’s version of events. (I was moved when my patient asked me, “Do you promise?” to not sneakily add in any transgender-identifying diagnoses after our recent visit. A reminder of the power imbalance, even if I forget about it sometimes.)
All of this has created a patient record that is, at times, virtually unusable. Much has been written about how medical records are so bloated with clinically useless information that it can be unsafe. Doctors and nurses can’t find the relevant facts hidden amongst all the extra crap. It can be hard to tell what conditions our patients have and what medications they’re taking.
I can’t tell you how often what’s in the record does not match reality. That’s why, when my patients say, “Do I need to go over all this again? It’s all in the computer!” I gently push back and say, “Nope, I really need me to tell me what’s going on.”
It’s a hot mess.
And now, there’s an added sinister layer. What if medical records are used to turn our patients into criminals?
My transgender patient who wanted to take “gender dysphoria” out of her chart didn’t have unfounded fears. In 2023, for example, Vanderbilt University Medical Center turned over medical records about transgender care to the Tennessee attorney general. The investigation came at the request of the governor, after conservative commentator Matt Walsh accused the health system of promoting gender-affirming care for profit.
Abortion, of course, is another clear example of where medical records could be used in criminal cases. In a STAT News article about the privacy of health records in states where abortion is illegal, several legal experts caution that medical records may not be as private as we’ve been led to believe.
“People think HIPAA protects a lot more health information than it actually does,” said Kayte Spector-Bagdady, a professor of bioethics and law at the University of Michigan.
She said the federal privacy rule contains exceptions that could allow prosecutors to compel businesses to relinquish information relevant to a criminal investigation — and the same is true for other kinds of legal action, too. In other words, in a state that has outlawed abortion, HIPAA wouldn’t necessarily keep records of the procedure from being used as evidence.
Beyond medical procedures and treatments that are at risk for being criminalized, all that extra info that I love to know about my patients — well, unfortunately, it can be high risk, too.
For example, undocumented folks are less likely to have health insurance, which affects the types of treatments and tests I can recommend. If I note that in the chart, it helps me take better care of my patients. But that information, codified in a legal document like a medical record, can also put my patients in harm’s way.
Even medical information that’s unequivocally critical for patient care — like being HIV positive, for example — has been historically used to criminalize our patients.
All this means I have some unlearning to do. What can doctors do to resist?
Through colleagues, I’ve discovered an important resource called Beyond Do No Harm, from the activist group Interrupting Criminalization. The organization lays out 13 principles that can help protect our patients from criminalization in health care settings.
For the patient I saw the other day worried about having “gender dysphoria” as a diagnosis in her chart, doctors and other health care providers who provide gender affirming care are advocating for another approach. Use a more general diagnosis, like E34.9: Endocrine disorder not otherwise specified. My patient was experiencing an endocrine disorder, which we were using hormones to treat. It helps protect her from anti-trans information gathering, but also communicates in her medical record that she’s taking hormones.
Beyond Do No Harm has some powerful core principles: End information gathering and documentation that is not directly relevant or related to the person’s course of care.
They ask some thoughtful questions:
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?
If you are a provider: Have you ever asked people seeking care questions that made them uncomfortable or documented information that you - or they - didn’t believe was essential to patient care?
Reading about this work is radically changing my practice. I still love to know all the juicy details about my patients’ lives, but writing them in the medical record may put them at serious risk.
I am working to become more deliberate in my question-asking — do I need to know this information to take care of the patient? — and more consensual in my documentation, pausing to ask, “Is it okay if I write this in your record?”
I still struggle with this approach. It can feel sterile to not ask questions beyond the purely medical. It’s bad medicine to not take into account the ways that society might affect my patients’ experience of disease. I reject the idea that doctors — especially us primary care docs — should always limit ourselves to the biomedical. And I genuinely believe that human connection will help save us from the despair of corporate medicine.
But I’m working to be more intentional. I want my visits to feel like an invitation to share, and I want the medical record to be a narrative that’s constructed with my patients’ consent.
I hope my patients come to trust me. But I am coming to accept that they may not trust the systems in which I work.
A note about patient confidentiality: Trust is at the core of all of my relationships with my patients, and as such, I don’t share their stories publicly. Any story you read here — or in any of my writing that isn’t in the electronic medical record where I write thousands of words a day, ha ha — either has details removed so patients can’t be identified, details changed, or is a composite story that combines information from multiple patients.
The essence of every story I share is true.
Like consent forms...there are no ironclad protections. But, why not record that your patient has long-haired guinea pigs? That human inquiry into how Fluffly is managing next time you meet will let your patient know they are seen and known.
it is all too scary what is happening now in many arenas. It is horrible that people need to worry about these things when seeking health care. I wonder how many it will cause to delay or not seek care?
I have a different but related question as it is about medical records. What is your take on documenting alcohol use or something similar. Now that there is a change in warning labels on the table could a history of that potentially mean the person wouldn't be covered if XXX developed in the future. One hears different things about covering pre-existing conditions etc. thanks.