Words matter in medical records. The most recent reminder of this truism comes from studies in Health Affairs and JAMA Network that have drawn attention to the potential for racial and ethnic bias in physician literature.
The disproportionate use of negative terms like “non-compliant” to describe black and brown patients could affect the impression future caregivers have of the patient, according to studies and subsequent media coverage. Additionally, with patients now having nearly universal online access to their doctor’s notes, reading seemingly derogatory descriptions of themselves most certainly degrades trust.
While bias resulting from the language used in medical records is an obvious potential problem, it may be time for a broader review of how clinicians describe patients in medical records.
The reason for a visit is often referred to as a “complaint”, as in “Patient complains of fever”. It is not uncommon that when hearing a medical student present a patient’s story on rounds, the patient exclaims, “I’m not complaining. I’m just telling you what’s wrong with me. Unlike the rest of the world, in the exam room, complaints are expected and welcome.
We also talk about patients “failing” treatments, as in “Patient failed medical therapy and now presents for surgery”. Except the reality is that if the patient has not achieved significant pain relief from the prescribed physical therapy, it is the treatment that has failed, not the other way around.
If a patient reports that they are not a substance user, we often use the term “deny”, as in “Patient denies having used drugs or alcohol”. The use of “deny” in most of the world has an undercurrent of disbelief, as if the clinician is saying “maybe so or maybe not”. Even if the physician does not intend to represent suspicion, a patient or other clinician reading the record might believe him. In the case of substance use or abuse, the patient is potentially not telling the truth, depending on the circumstances. We also use “deny” to indicate the absence of various symptoms, as in “Patient denies having coughed”. Who knows better than the patient if he is coughing? A physical examination doesn’t need to be described in the medical record as a cross-examination, does it?
When a patient cannot or does not want to follow the doctor’s recommendations, this patient can be called “non-compliant”. You might as well call them “disobedient.” The word stinks of condescension and promotes the infantilization of patients, which is never appropriate. Its use negates the idea of shared decision-making between doctor and patient, where decisions about tests and treatments are made together and in full knowledge of the facts. Ironically, shared decision making makes the patient more likely to be “compliant” with the plan.
The use of OpenNotes, where doctors’ notes in medical records are available online for patients, has grown over the past few years and is now cemented in place with the 21st Century Cures Act. Initially, such access worried physicians, who feared – ultimately unhelpful – that these online records would lead to a flurry of (non-billable) calls to the practice, with patients requesting a slightly abnormal lab value or the meaning of a medical term. This fear does not appear to have materialized to any significant extent, in part because patients are not yet fully aware that the notes are shared.
We have all learned to use a particular language as part of our medical training. Maybe it’s time to refresh that language.