TikTok - what it has to tell us about the medical lexicon?
How many of you have been shocked by what has been written in your medical notes about you?
I read the following New England Journal of Medicine article this weekend and was horrified. As a senior member of the medical profession, I shouldn’t be. The article examines how patients use TikTok to highlight biased and stigmatising language in their medical records. The authors analyse patient videos showcasing examples of insensitive phrasing and relate these to existing research demonstrating doctors' and healthcare professionals' patterns of bias against patients with specific demographics in their clinical records.
The following are examples of some of the phrases or text patients read when given access to their medical records:
“High-risk homosexual behaviour” - presumably, this statement was made in response to the patient admitting to having multiple sexual partners, unprotected intercourse or some other high-risk sexual behaviour.
“Habitual aborter” - This is an accepted gynaecological term for someone who has recurrent miscarriages and is still part of the medical lexicon.
“Generously proportioned” - a euphemism for being obese.
“Patient is a pleasant white female in NAD [no acute distress]. She is wearing a UF [University of Florida] sweatshirt and black leggings. She has long blonde hair.” - the point is, why is her appearance being documented this way? Does it have anything to do with her medical problems? Will it affect her medical management?
“Patient CLAIMS to eat healthy and exercise” - the HCP did not believe this patient.
One patient found out that she was diagnosed as having ‘borderline personality disorder’ by her doctor and was never given the diagnosis or offered any treatment. The assumption was that labelling someone as having a borderline personality disorder would require the doctor to explain the condition and its treatment. The treatment of borderline personality disorder is not that effective.
I am aware that this happens in MS. I have several patients who tell me that the first they heard they had MS was when they asked for a copy of the medical correspondence from the neurologist to their general practitioner. Similarly, many patients have found out they have functional neurological symptoms from their notes. Functional in the neurological context means medically unexplained, and it may indicate a psychiatric syndrome called somatisation disorder.
Terms I have personally used that patients have not liked include ‘analgesic/medication overuse headache syndrome’. When this diagnostic label goes into the medical notes, patients interpret it as a euphemism for addiction. It is not; it simply means that using analgesics regularly for headaches can lead to an analgesic withdrawal headache, and it, therefore, creates a vicious cycle of repeat dosing of analgesics to prevent headaches from coming back. A similar phenomenon happens with caffeine-withdrawal headaches. The medical profession formulates these terms without considering how stigmatising they may become in the future.
I often get taken to task by patients over my recording of their physical functioning, which may impact their ability to get disability benefits. I now ask patients what they can achieve on their best days and what they can do on their worst days. Thankfully, medical notes are not critical in the UK for disability assessments. These now require an independent assessor. Insurance claims, however, do use the medical notes. For example, not declaring a medical diagnosis before taking out insurance, then claiming for that diagnosis, and the diagnosis is found to predate the policy from the medical notes inevitably means the insurance claim will not be successful. This scenario is not that rare.
How many of you who have MS or another disease have access to your medical records and have had similar experiences where what is documented in the notes is similar to what has happened to these people sharing their experiences on TikTok?
I am also interested in medical euphemisms. Please note the latter is not consistently negative; for example, using the term worsening disability to not label someone as having secondary progressive MS allows the person to have access to a broader range of disease-modifying therapies (DMTs). I stopped using the term progressive MS for many reasons; a minor reason is access to DMTs.
The article argues that this language reflects underlying attitudes within medicine and proposes solutions such as using less stigmatising terminology and improving patient communication. The authors conclude that listening to patient concerns, as expressed through platforms like TikTok, is crucial for improving patient-centred care and reducing healthcare inequalities. They call for system-wide changes to address this issue. The issues raised reminded me of medical gaslighting.
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
The most annoying bit in mine is "Patient denies anxiety. Patient denies health anxiety. I suspect this is all health anxiety" followed by constant dismissals until I eventually insisted on getting a private MRI that showed lesions. :| I think comments about 'health anxiety'/malingering are particularly infuriating because they colour the opinions of every doctor you see from then on.
I saw "patient seems distressed upon learning she has MS" and was annoyed at that. Like no shit Sherlock. No one also bothered to explain what MS was at that time.