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Comment by arielweisberg | Hacker News Reader

Medical notes are largely fiction IME. You should request all your medical records from any doctor you have seen and start demanding they correct them. You will be shocked at the lies they tell about you.

You will be even more shocked down the road when you find out how these lies can hurt you.

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"how these lies can hurt you"

True story, I had a major illness in my late 20s. And apparently I have a high tolerance for pain, so the nurses and doctors repeatedly underestimated how much pain I was in. I can be in incredible pain and still hold it together and answer questions in a calm and rational manner. This made one doctor suspicious that I was faking the whole thing. So then I tried to adjust my behavior. I started deliberately giving more outward signs of the pain I was in. And then the another doctor accused me of exaggerating or being a hypochondriac.

I was not able to find a level of external performance that kept all of my doctors happy. If I was too restrained, then they had trouble believing I was really feeling the pain that I described with my words. But if I tried to act the pain I felt, then I was accused of being a hypochondriac.

I should add that most of my doctors were great. In my whole life, I've only had 2 negative experiences with a doctor, the two that I just mentioned.

"I have a high tolerance for pain"

I know you said "apparently", but how can you know this for a fact?

How can anyone's pain tolerance be objectively measured? I've always wondered about this...

Pain causes not just symptoms, but also physical signs. Increased blood pressure, for one. These are the physiological consequences of the way pain signalling happens in the body. People can even die from these physiological effects.

The physiological signs of pain occur mostly as a consequence of the way we consciously experience and process pain. (This is why "general anesthetic" works: central processing of pain is required before sensory input is actually registered as painful, and so, without the brain there to decide that a thing is painful, the physiological consequences don't happen. Pain that would give you a heart attack if you were awake doesn't cause the slightest physiological problem when you're unconscious from general anesthesia.)

If you are receiving a lot of "painful-stimulus describing" sensory input, and you're consciously experiencing those stimuli as painful qualia—but your body shows relatively little physiological response—then you have a high tolerance for pain.

This can be measured by using a standardized painful stimulus (e.g. a sub-cutaneous injection of a standardized dose of some insect's venom) together with an fMRI (or just self-reporting) to measure the intensity of the painful qualia, and various physiological monitors (EKG, etc.) to measure physiological response to the pain.

I believe this has been done before specifically in the case of certain sects of monks who like to demonstrate the depth of their meditative ability by tolerating large amounts of pain. They did the experiment to try to figure out whether the monks are tolerating an experienced pain, or merely are somehow not experiencing the painful stimulus as pain-qualia.

Contrary to the myth, general anaesthesia does not in fact fully defeat physiological responses to painful stimulus.

I've watched first hand as the anesthetist has said "whatch the monitor as the surgeon does this bit" and seen the response.

Not at the levels we like to use for surgery, certainly. But my understanding is that a “medically-induced coma” (the potentially-irreversible palliative-care kind) does suppress all pain signalling. Likewise, people in a vegetative state have no physiological response to pain. If you completely suppress central functioning, then you completely suppress pain response.

(There might still be a local release of pro-inflammatory cell-danger-response purines from the wound site that do things when they hit various organs/tissues on their way through the circulation, but I believe we don’t tend to call those “pain signals”, for the same reason we don’t call them that in plants or fungi.)

Some anesthesiologists believe that, but there's really no solid evidence for it. The reality is that no one really knows how or why anesthetics work, we just know what generally does work. I was told this by an honest doc, who also told me this scary fact: Because it's best to minimize the drugs that put you under (especially gaseous), and b/c we're getting better at walking that line, it's increasingly common to have patients wake up and freak out at the sight of their chest spread open. That's why the anesthesiologist keeps a couple of loaded syringes on the cart ready for emergency use: one is an instant paralyzing agent, the other a powerful memory blocker.

I found omissions to be particularly interesting too.

For example, I once declined to take a shot after the doctor explicitly told me that it would most likely not yield any benefit, given the response I had from other treatments.

The medical record simply shows that I declined the shot, but not that this was upon strong recommendation from the doctor.

This became an issue later when the provider went back to the records and stated "you were offered this shot and declined". It is technically true of course, but context would tell a slightly different story, and would definitely shift more responsibility towards the doctor.

The doctor was probably right to make this recommendation, but the fact that it is not captured in the records makes me uncomfortable.

Half the goal of note taking is not writing down anything that will implicate you in a future legal battle.

This statement is very accurate.

The article has an example of the opposite, but equally important oddness of liability. If you don't mark down "XYZ thing is normal" then someone will come back to complain that you didn't find a problem with XYZ when examining them 27 years ago.

A while back I had a doctor where you could access everything via the online portal. I don't think some of the employees there realized that as there was some truly shocking stuff in there. One thing I learned was that anything I said which could possibly be misconstrued in a negative light was noted in my record as if the negative connotation was accurate.

I think you're being too kind. The person taking notes was (or should have been) trained to listen for and accurately record admissions against interest. If it ever wound up in court stuff like this is presumed to be highly reliable because reasonable people are disinclined to admit to negative things.

This sort of thing highlights the need for broad and bulletproof physician-patient privilege.

When I carefully read my records, I saw a bunch of random errors. I asked my PCP and surgeon how that happened; they said “probably transcription errors”

I don’t have a lot of faith in the quality of the records

And this is before you realise that your identity may have been incorrectly matched against someone else leading to you having somebody else’s treatment on your record.

It’s not always the healthcare provider at fault here (but must usually be). I’ve been peripherally involved in 2 cases where someone actively pretended to be someone else (one due to a sketchy immigration status and the other was a mental health situation).

Both were a complete nightmare to sort out.

In the US you're legally entitled to your medical records too but every time I've done it the response is always defensive, ie "why do you need them", "send me the doctors information and I'll fax it to them myself".

every time I've done it the response is always defensive, ie "why do you need them"

I was asked this once after requesting mine. I flatly said "I don't", and waited. The person on the other end of the line was clearly thrown off by this, probably expecting something they could dish out a canned response to, hoping I'd give up. It was obvious from their voice they were scrambling for what to say to that.

A bit of rigmarole later, I had my medical records.

Why would they be so hesitant? Surely it’s not that extra work for an office admin to pull something up and hit “print”.

Some doctors have been concerned that patients lack the education needed to interpret their own charts. So when patients don't understand something they call back and ask a lot of questions, which doctors see as a waste of time. (I don't agree with this perspective, just giving some context.)

In the US that's fine, because the doctor can bill for the follow-up consultation.

Answering questions over the phone is usually not billable.

Most patient management systems don't have a convenient "print" button to print out the entire file.

Individual documents/entries, yes. Everything, no.

I encourage patients to read or listen to me dictate my note about them during our exam. Often they catch something that I had misinterpreted.

That's a great idea! Simple and sounds very effective.

Side question, would the "right to be forgotten" also entitle you to call your doctor and demand that all your medical records be destroyed?

Docs need to keep a history for multiple reasons, from insurance to malpractice lawsuits, so no.

My understanding is that, in the US, your medical records are the property of the healthcare provider, absent some contractual language otherwise. The new thing was the federal law that required them to give you a copy of everything at cost. Before that, the only sure way to get a copy of your medical records was to sue the provider and perform document discovery.

This is interesting, and I didn't know it! Does it include everything (doctor's notes, etc.), or just whatever your doctor/organization wants to include in your "official" medical record?

I'd like to do this myself, but I want to understand what I'm actually entitled to so I can be prepared if they push back.

Same experience. Try requesting through a Psychologist or case worker I have had success with that.

At Kaiser, you just have to walk into any member services office and request. It doesn't happen right then, but I believe in a few days you get a thumb drive with all of your records on them.

However, the law allows the doctors to redact certain portions in your copy that they feel could be harmful to you.

1-2 years after moving to Finland I had a brain-scan done, and the doctor involved told me I could get a copy of the data if I was interested.

In the past I worked at a medical company, so I was familiar with the joys of DICOM, etc. I paid €20 for a copy of my own brain-scan data on CD-ROM, posted to my house.

Pretty mind-blowing to have access to a scan of my own brain (well blood-vessels at least) on my home PC.

> However, the law allows the doctors to redact certain portions in your copy that they feel could be harmful to you.

Like what?

Like any parts which could cause you to sever ties with them, find insulting, or sue them.

There was an interesting discussion earlier on here about the potential emotional harms of suggesting to a patient that they are likely to develop Alzheimer's within a few years (an AI based early detection system).

On the one hand, you might catch it and treat it earlier. On the other hand, it will color every interaction you have with others and cause stress every time you try to remember something. The potential harm may very well exceed the harm of not telling the patient (up to and including suicide).

If a doctor suspects something but lacks evidence, they may simply make a note to look for more signs at subsequent follow-ups. A patient seeing that may read more into it than is there, and subsequently suffer undue stress or paranoia.

Patient claims to be suicidal.

https://www.hhs.gov/hipaa/for-professionals/privacy/guidance...

Scroll down to "Information Excluded from the Right of Access", particularly the bit about psychotherapy notes.

Also see "Reviewable grounds for denial (45 CFR 164.524(a)(3))", which includes things like "The access requested is reasonably likely to endanger the life or physical safety of the individual or another person" or "The access requested is reasonably likely to cause substantial harm to a person (other than a health care provider) referenced in the PHI".

https://www.hhs.gov/hipaa/for-professionals/faq/2046/under-w...

> Another limited ground for denial exists if a licensed health care professional determines in the exercise of professional judgment that the access requested is reasonably likely to endanger the life or physical safety of the individual or another person. For example, a covered entity may deny a suicidal patient access to information that a provider determines in his professional judgment is reasonably likely to lead the patient to take her own life.

"Extremely painful stomach cancer ruled out"

> In the US you're legally entitled to your medical records too but every time I've done it the response is always defensive, ie "why do you need them"

Whenever I've been asked, I just say "I want them for my files," and I've had no problems.

Sometimes questions like that could actually be an attempt to be helpful. For instance to send along only the needed records rather than a fat file full of extraneous info or save the patient the trouble of being a middleman between two doctors.

Sometimes questions like that could actually be an attempt to be helpful.

This is my thinking, annoying as it can be-I understand and can appreciate this position. It's possibly a matter of how that help is intended to be delivered.

"Why do you need the files?"

versus

"Is there something about your last visit you have questions about/do you have a follow up question for your doctor?"

etc.

I mention this because when I was on hard times financially and fell behind on a few bills I found it quite invasive and annoying when I called, on my own initiative to make a payment only to be asked "Why were you late on this payment?" in a rather abrupt manner. My response has always been "Is this question required for you to process the payment?" to which "No but we have payment options and plans to help individuals who may have fallen on hard times".

Okay, that's fair. I'd be more receptive if that olive branch was offered more delicately than "Why were you late?" which is frankly none of the debtor's damn business.

I agree that it could be handled more delicately, and that doing so would probably be more fruitful (and just more pleasant). I'm not sure it's none of the creditor's business why a payment was late though. It's certainly in their interest that payments be made on time, and to have the ability to estimate the likelihood that future payments will be late. Given an obligation to pay an amount by a given date, it doesn't seem completely unreasonable for an explanation to be requested if the amount isn't paid.

this is probably just because there is a pop-up dialog box the secretary sees when she puts in the request, and they are obligated to ask. there is no answer that will result in your request being declined, including "I'd rather not say".

This may actually be financial. The rules vary by state, but most states allow practices to charge copying fees (even though they're generally no longer copying paper charts).

I think those are regularly charged if records are being obtained for legal reasons (e.g. drug/equipment manufacturer lawsuits) but are generally not charged if records are being sent to a new provider. Copies for personal use/records are probably on a per-provider basis.

Faxing to you carries a bunch of bureaucratic hurdles to avoid HIPPA violations. Facing to another physician doesn’t, and the other physician will be quite good at narrowing down exactly what records he wants.

It’s just way less work to send them directly. And since that’s what most patients are asking for...

That’s just clerk-speak for “I don’t feel like doing this”. You handle it like any other lazy customer facing person. Dig in and escalate if necessary.

I recall reading perhaps 30 years ago that in China people (from birth) possessed their original medical records and brought them to the doctor's office or hospital. I have no idea if this was/is true. I remember thinking how wonderful this would be, as opposed to the U.S. system (I'm a retired neurosurgical anesthesiologist with 38 years of experience — UCLA/USC/UVA). As a rule, I administered anesthesia to people whose records were often lacking very important information from outside physicians/other hospitals that was simply unobtainable in the time frame available to get it: i.e., patients were admitted the evening before craniotomy/brain tumor resection etc. scheduled for the next day, and their previous records — other than those from the hospital I/they were in — might as well have not existed.

Support the OpenNotes movement. Patients have a legal right to view their records (with some limited exceptions). But it needs to be easy and happen by default rather than as a special request.

https://www.opennotes.org/

Forget "view". I want to own my records. It's my personal data that I've enlisted a professional to gather on my behalf.

Once you view, you will own.

(Or so many years of experience with DRM says ;-)

can you elaborate on the distinction you are making between viewing and owning?

I presume they want to have control over who can access the file.

Then their interpretation/diagnosis would be their information, arrived at by processing your raw data through their experience and education.

At one point recently someone noted on a X Ray that I had hepatitis. I asked my PCP; he said don’t worry, we don’t diagnose that with radiology.

I asked that it be removed.

No can do.

AFAIK I’ll go to the grave with a note from a random radiologist that I have hepatitis.

Google search suggests hepatitis is diagnosed via x-ray/cat scan.

Or maybe it was hipatitis? ;-)

Your comment reminds me of a series of Seinfeld scenes [0] which honestly scares me to death as I'm pretty sure all my doctors have labeled me as a hypochondriac.

[0] https://www.youtube.com/watch?v=ZJ2msARQsKU

Yes at least with paper they were typically tied to one hospital. Now with Epic they are basically automatically pulled over.

The product for this is called Care Everywhere for epic to epic transfers.

An example handout from Yale New Haven Hospital about it: https://projectepic.ynhh.org/Epic%20Newsletters%20and%20Fact...

You can also find out more about cross-vendor interchange at https://carequality.org/

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