How patients on TikTok are expressing their experience and critique of harsh, biased communication by their doctors (and what to do about it) nejm.org/doi/full/10.... @nejm.org - ThreadSky

erictopol.bsky.social • 28 days ago

How patients on TikTok are expressing their experience and critique of harsh, biased communication by their doctors (and what to do about it)
https://nejm.org/doi/full/10.1056/NEJMp2410601
@nejm.org

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sarahishere.bsky.social•27 days ago

"Non-compliance" chaps me every time I read it in a chart and its often listed in the "problem list" as though it has has ICD-10 code. So judgey.

maxdwolf.bsky.social•27 days ago

📌

athenaveritas.bsky.social•28 days ago

We shld absolutely pay attention to pt experiences & work to educate when feasible & where appropriate. How many times have we seen mistakes in charts? Medicine is FULL of acronyms, latin-based words & abbrs. One of my first experiences w/ a pt chart in med school, it said, “Pt SOB”; I was appalled…

defeline.bsky.social•28 days ago

Important to note:

dollymad1812.bsky.social•28 days ago

Patients don’t understand that we are trained to write in SOAP format. We state what they say, what we observe, our clinical assessment, &our plan of care to address patient centered goals. We don’t talk to them like our clinical notes read! Until surveyors change how we chart, it will stay that way

soranus.bsky.social•28 days ago

This is not a failure of sensitivity but a predictable outcome of mandating that a document meant for two primary audiences (medical professionals, billers) suddenly be open to the patient themselves. Is there future answer in LLM’s creating / translating this for patients?

soranus.bsky.social•28 days ago

The answer is certainly not in pointing fingers at physicians or wishing they would find language that sparks joy in every patient when making a record of complex clinical findings.

jasperino.bsky.social•28 days ago

Our medical records deserve scrutiny to ensure they are correct. I'm glad I have access. Corrected a note that I had "a history of diabetes' because I don't, not remotely true, and our records can be used by some insurance companies (LTC, Medigap) to deny coverage. I've made other corrections too.

ekindignp.bsky.social•28 days ago

the language of diabetes
https://diabetesjournals.org/care/article/40/12/1790/36977/The-Use-of-Language-in-Diabetes-Care-and-Education

jreal.bsky.social•28 days ago

A surgeon once referred to me as “delightful” in the notes, so no complaints here.

kucher06.bsky.social•28 days ago

IMO notes are for the legal community. Non compliance is charted to protect the doc from blame for a bad outcome.
As a person almost 40 years in care for chronic condition…I have NEVER felt like the medical system was built for me as the patient. It serves itself and protects the physician.

nursetawny.bsky.social•27 days ago

Our problem, as usual, is poor health education. It was especially pronounced during COVID, but it’s an epidemic. People don’t understand the terms and why they’re used. They also been colloquialisms and weaponized. It fosters dissatisfaction, inferiority & “us vs them” btw providers and patients.

eternalouroboros.bsky.social•27 days ago

Tell me why my orthopedist felt a need to describe me as " pleasant." Tell me why that was used in my initial evaluation of a rotator cuff tear. How does the addition of that word in any way affect my medical care compared to someone NOT described as " pleasant"? I don't get it.

nursetawny.bsky.social•27 days ago

I see that a lot in documentation. We’re required to add the patient’s disposition. Typically, only abnormal results need to be noted “combative”, “aggressive”, etc & “awake, alert and oriented”. With all of the physical and verbal abuse medical staff gets, I think it’s meant to reassure the reader

eternalouroboros.bsky.social•27 days ago

It shouldn't have been there. If the hospital required a disposition statement something along the lines of "cooperative" would have been far more appropriate. The notes are under scrutiny by patients for reasons that are valid as mentioned in the OP.

joshwithouthats.bsky.social•28 days ago

This makes me think of this video I found a couple years ago that blew me away. Context is chronic backpain, audience is a room of Army physicians and other medical staff. TLDR: the language doctors use w/ patients and the agency patients feel they do/don't have are HUGE
https://youtu.be/JS5ZCCOv07c?si=BXMeV5v9yN5nepWz

bgrrl.bsky.social•27 days ago

I just watched this while spinning indoors on my bike. This is a great video and very much my approach to treating back pain and other pain disorders in my clinic. I love the education around "degenerative disk disease." Hate the wording. Excellent teaching by this doc. Thanks.

susanhealey.bsky.social•27 days ago

The one I find most annoying is the phrase “non-compliant with meds.” You have to stop taking a drug due to severe side-effects or treatment failure and you get labelled “non-compliant.”

moralsbeforemoney.bsky.social•27 days ago

That should never be listed as noncompliance- that should be listed as an adverse effect and intolerance.
They don’t say chemo patients are “non-compliant” when they cannot tolerate the chemo… they actually won’t continue the treatment bc of the severe side effects

susanhealey.bsky.social•27 days ago

It’s just a shorthand for their notes, I think, that covers lots of scenarios. But it harkens back to the day when the doctor-patient relationship was one way.

sel33c.bsky.social•28 days ago

Wrote about similar sentiments shared by parents in the pediatrics world. It was striking how our language and word choice could inflict lasting, negative feelings and attitudes, yet also provide validation and immense support. Plenty of work ahead to build towards the latter.

nursetawny.bsky.social•27 days ago

We need to bridge the public health education gap

ramblingdoc.bsky.social•28 days ago

Professional terms are used to expedite communication between doctors. Medical records were originally created for the doctor's personal use and for referrals to other doctors. We don't expect other professionals to communicate with each other using only layman's terms

bluegumby.bsky.social•28 days ago

100%.
and now that documentation is 70% billing and 20% metrics and 3% legal and 2% timestamps
we can choose to make the last 5% "make the patient feel better when they read it" scoring/metrics/admin overreach OR preserve the last non-garbage 5% to actually convey diagnosis and treatment plans

haroldpurplecrayon.bsky.social•27 days ago

Let's go back and ask what is the purpose of "notes". I use them to remind myself what's going on, my thoughts, and my plans. They were never designed for insurance or the patients to read. They are for communicating between providers. How can we return to that?

bluegumby.bsky.social•27 days ago

first the whole billing system has to change... then we need to go back in time and have the government coordinate private data sharing (EKG, imaging, etc) regardless of EMR rather than issuing mandates linked to funding. Maybe having clinicians rather than MBAs in charge would have helped?

ramblingdoc.bsky.social•27 days ago

I started practice in 2000, when employment was just starting. We should have organized to stop the corporate takeover, but doctors didn't want to be political. So we ended up ceding power to hospitals, and scope of practice to nurse practitioners, PA's, nurse anesthetists, etc

bluegumby.bsky.social•27 days ago

100%

moralsbeforemoney.bsky.social•27 days ago

My job is to read patient charts…every single physician note, every single nurses note… every clinician that sees that patient while in the hospital. I will say I don’t see non-compliance wrongly documented A LOT but I see snarky comments that reflect the physicians’ personalities

bluegumby.bsky.social•28 days ago

The system only has so many dollars & so much time for actual CARE delivery. The vast MAJORITY of non-procedural clinician time is already wasted. While it should be good for patients to have access to their health data- fear of reader reactions will waste time & make documentation even MORE useless

mikeyd123.bsky.social•27 days ago

I have several chronic conditions that require the treatment of 4 different specialists.
My experience has been that the specialists see you as a piece of meat where my GP treats me like a human.

jaysoutbreak.bsky.social•27 days ago

I’m sorry you are going through that. I empower you to make the difference. Voice your concerns, challenge their treatment plans, and advocate for yourself to be heard and seen.

jaysoutbreak.bsky.social•27 days ago

I understand that overall pts mental health and self images need to be preserved, but we have to have some understanding on what the Physicians are facing. High volume of pts, multiple overlap, low volume of time. They are writing there notes to justify their dx and moving on to the next.

jaysoutbreak.bsky.social•27 days ago

For them to have the time to implement these changes, we have to hold the corporations (hospitals, chain practices) accountable for getting them more time to serve their patient.

bgrrl.bsky.social•28 days ago

Excellent observations. It is sound advice to write as if the pt is reading the note. These days, many are. Some of the old trite medical language has got to go. Is it really medically helpful to say "well-developed, well-nourished female" and things like that? Perhaps. But unlikely.

jaysoutbreak.bsky.social•27 days ago

I think depending on the context, it’s important to note how the pt showed up that day. (E.g. psych sxs/dx, routine PE, assault). Not as important if they are coming in for wound care or STI testing.

bgrrl.bsky.social•27 days ago

Yes. But what does “well-developed” mean to the average adult? Even “well-nourished”? We say these words only because we say these words. They impart no useful information.

jaysoutbreak.bsky.social•27 days ago

We shouldn’t be focusing on the average adult. We should be patient focused. If our patients have questions, we should be encouraging them to question us. This is not a “walk by faith not by sight” profession. I encourage my patients to speak up and question/challenge me. Other providers should too.

bgrrl.bsky.social•26 days ago

You totally missed the point. That's ok.

jaysoutbreak.bsky.social•26 days ago

I don’t think I missed the point. My response was we should be educating them. If we use terminology they may not understand than we need to educate and elevate them. All of our patients are smart and I believe its more important to teach them so they can understand instead of assuming they cant.

bgrrl.bsky.social•27 days ago

Agree. Normocephalic? There's just a lot of jargon said because it's always been said. I review a lot of medical records, and I can't believe a lot of what I read.

jaysoutbreak.bsky.social•27 days ago

I get where you are coming from. It’s up to us (the practitioners) to explain to our patients what the main take aways from their visits are and educate them. I think using jargon is okay especially if it encourages them to learn something new. It’s up to us to make that difference.

swalexander.bsky.social•28 days ago

It’s not much different in Germany. It took months for me to be diagnosed with thromboses, and even six months after being diagnosed with APS. I didn’t receive any follow-up tests or care.

macherie123.bsky.social•27 days ago

My husband's leg looks similar. What's APS? Related to the thromboses? Superficial? Thanks for any help you can give for me to research, to talk with his MDs.

swalexander.bsky.social•27 days ago

Sorry to hear. My first approach was finding a hematologist to have an ELISA test for Von Willebrand Factor (VWF) and Lupus. Good luck for the journey.
Some research: https://www.mdpi.com/2077-0383/14/3/733

swalexander.bsky.social•4 days ago

Here some more details.
Thick Blood Due to Factor V Leiden and Antiphospholipid Syndrome (APS) High Phytanic Acid Levels and Muscle Dysfunction: https://swaresearch.blogspot.com/2025/02/thick-blood-due-to-genetic-clotting.html

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