On the accuracy of medical records


Last year, I went to the emergency room at the same time as someone else: Both of us were asthmatic and both had been exposed to some sort of really nasty toxin that was a byproduct of the construction process in our building. (Right after we had been assured by the housing authority that everything was safe in here. I have never had breathing problems as bad as that, or anything that felt even remotely like that, even when I inhaled smoke once in a kitchen fire.)

Anyway, we eventually got our medical records from that visit, to show the housing authority so they would relocate us somewhere breathable.

It was very interesting. My records claimed that I had a history of severe scoliosis and allergies to medications that I am not allergic to. I think her records noted allergies to medications that I am allergic to, as well as other elements of my medical history. In other words, despite the fact that they seemed to question us each separately and enter us into the computer separately, they got all the data jumbled. That is scary.

Scarier is that I’ve seen other of my medical records. They often mess up things as routine as what city I live in. Sometimes they confuse me with other patients. Sometimes they add fictional bits of medical history that never existed, sometimes they leave out things that did exist.

Some are undoubtedly deliberately fudged.

I have on tape a description by a tester of fudging an IQ test so my weak points would not show up, which has me even more convinced that IQ testing is not as “objective” as people claim it is.

On a more sinister note, I have the records of the time I experienced attempted murder by neglect, and things were clearly charted in such a way as to make even the medications I was given at the time look much different, more according to procedure, more innocuous than they were. (When they did not succeed in allowing me to die the first time I had an obvious dangerous reaction to a drug, they gave it to me a second time “just to make sure” and told me that they would give me an antidote if I would agree to do what they told me in other areas. Records of that time document a slow increase in that medication (never happened) until an adverse reaction happened and it was discontinued (not quite).)

I’ve seen instances in which what they told me was not what they wrote down. When we had the breathing problems, they talked all about how they could hear the big difference in lung volume after breathing treatment, and exactly what was going on and stuff, but when they wrote it up they wouldn’t mention things like this, although they would sometimes exaggerate what we said about what we were planning to do about all this. In that case, since it was tied to a somewhat high-profile controversy in the area, I suspect they were covering their asses (one doctor even explained to us that he couldn’t write something a certain way because although he believed it was that way, he was afraid if it showed up in court he wouldn’t be able to prove it 100%, because there is no way of proving that particular symptom 100%), but it doesn’t make it right.

I have also had people invent elements of my life that don’t exist, as if out of thin air.

I once had a case manager write in my file that I was working for my landlord in exchange for rent. I never did anything like that so I don’t know where she came up with it. She also fabricated diagnoses out of thin air, and claimed I’d told them to her, when I’d never heard of them before. On the other hand, the diagnoses she was faxed by my doctor, for physical problems, were disregarded in favor of her imaginary diagnoses and of psychological problems. The most bizarre part was that she said all of this, and all her other distortions of my life, were what I had told her. I had told her nothing of the sort. She didn’t like me, though, and I think that was a lot of what happened. She told me not to be so confrontational before I’d had a chance to type a single word to her. She seemed to not be responding to reality much at all.

But others just seem accidentally, but dangerously, careless.

Switching around elements of my medical history and the history of the woman who came to the emergency room with me is bizarre and dangerous but probably not deliberate.

A lot of the factual errors are probably similar. Stuff that people got confused.

But what disturbs me is that medical records like this are taken as more factual than anything else. Clearly, from my experience and others, they can be either deliberately fudged or unintentionally screwed up in other ways. Yet medical records are supposed to be some kind of reality. They are sometimes treated as more real than real. This is strange.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

5 responses »

  1. I haven’t looked at my ASD kids medical records, which would be rather massive. One time I saw them in a stack and they were about 5 or 6 inches thick.

    What I have are his/her IEP records and some psych/IQ type testing results. The IEP’s especially have misleading stuff in them. Like some of my kid’s homework was so far above his/her ability that I was basically doing it with my child sitting there watching me and me explaining what I was doing and why, trying to teach it. It was easier than dealing with the teacher and fighting for an entirely different assignment.

    But it shows up as his/her work. There’s also a statement about my child not being able to do something “probably because s/he has little opportunity for exposure to blah blah blah.” But I took my kids to all kinds of events if I thought they were educational and interesting. We went to lots of galleries and museums and stuff. Maybe my child had fewer trips to baseball games or fashion shows… things I think are stupid anyway, but my kids got lots of high quality experiences and even a little travel (car trips). Even though we were really poor.

    They looked at me and my kids and assumed that my children had some kind of deprived childhood.

    I resented their assumption. My kid had problems with some concepts but it wasn’t because of lack of exposure to whatever. No one ever saw autism even though it was sitting right there, my kid is sometimes “active but odd”, but there are tons of signs of autism in this kid and no one ever tried to account for them. Mostly because so few people knew about autism then, but still no one ever tried to label it…. which is just as well I suppose.

    So much for the “train wreck” business.

  2. You’re probably aware of the 14-year-old in Florida who died after a videotaped beating at a “boot camp,” and how the medical examiner claimed that he actually died of natural causes due to “sickle cell trait” (a second autopsy was done by a different ME yesterday, and concluded that sickle-cell trait was not a factor). When she heard about the sickle-cell claim on the news, one Florida woman immediately got in touch with the lawyer representing the boy’s family and told him about another autopsy report that ME had signed off on. It was for her daughter, who was killed by Hurricane Ivan in 2004 and it stated, among other things, that her appendix, gallbladder, uterus, ovaries, prostate and testicles were all in “unremarkable” condition. No, you’re not hallucinating. Note that daughter’s appendix, gallbladder, uterus, and ovaries had all been surgically removed (the latter two because of severe endometriosis) several years before her death. I’m not aware of any intersex condition in which both male and female internal genitalia are present and “unremarkable.” It seems we humans have a remarkable (hehe) capacity to believe things that we objectively know cannot possibly be true.

  3. Doctors taking a history, unfortunately, tend to hear what they wan t to hear and report what fits with the snap judgment they make within the first few seconds. We’ve seen that too many times with our son; the records record us as having said something that is 180 degrees off.

  4. I have copies of my records and my son’s. I caught on early to the flaws – The Ped. Neurologist who diagnosed Alex, in his first report, stated “he does like to line things, such as cars and soldiers, in a row”

    Soldiers??? Pure fiction. And nothing about me would give the impression I’m the toy gun & soldier kinda mom….

    I made a point of correcting my Family Dr.s copies of notes that were wrong from that point on and if he received a report I felt was too wrong, I got him to reply to that Dr. correcting the mis-information.

    It’s still hard to say in the long run how accurate our records are but I’m happy I have a Dr. who considers my medical records to be my medical records and will give me copies of whatever I ask for.

  5. A copy of my medical record officially produced as evidence in a workplace discrimination case, contains a detailed description of my alleged statements made during the appointment that never took place due to the doctor’s having a family emergency. He didn’t show up for a scheduled appointment. I came in, waited for about 20 minutes in his waiting room (with his receptionist being there) and then left. Later, he called me at home and profusely apologized for being unable to make it due to a family emergency. Imagine my surpise while reading detailed and signed “notes” and 2 pages of his deposition transcript (taken under oath and penalty of perjury) describing what allegedly went on during our “session” on that very day…while another part of my chart contains a statement in his own handwriting that that appointment never took place.

    The individual in question had held his license to practice independently for about 5 months as of that moment, and was aggressively seeking to establish himself as a forensic hired gun. My employer’s lawyers were fully capable to offer him ample opportunities…

    I kid you not. Officially documented proof of every statement made in this post is readily available. This was not the only falsification he made in my chart, which from now on remains my permanent medical record.

    Yet another one I saw in connection with the same events…He had in his office a therapy dog – a gorgeous Golden Retriever named Tucker. Being a doggie mama unable to just pass by any pooch in sight, I was all over Tucker every time I was there (he’d approach me with a stuffed toy in his mouth, then plop down on my feet for tummy rubs), and even discussed with the Dr. my concern about several bald spots on the dog’s legs (the Dr. said those are called “hot spots”, and we spoke about them for a while).

    Imagine my surprise when I read in his deposition transcript (also taken under oath) how surprised he was and how he particularly noted me being “totally oblivious and ignoring toward presence of such a friendly dog” (my employer was trying to demonstrate that I was allegedly “lacking empathy and concern for students” and therefore should not be allowed to work in Student Services due to “being too disabled”)….

    (there was more of the like, but it would be redundant and bandwidth-consuming to quote them all. You’ve got the idea).

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