By Fred E Baker
Allowing Your Doctor, Clinic, Or Hospital To Control Your Medical Records Can Have Negative Consequences
My wife and I have become authorities regarding her Medical Records. Not by choice, but by necessity born of a combination of conditions and circumstances:
1. She has a wide variety of disabling ailments which produce thick medical files packed with huge amounts of information.
2. Her conditions have required consulting many different specialists within the medical field.
3. We have moved many times over the years, resulting in the need to transfer records across state lines as well as from city to city.
For the reader to fully understand the procedures we recommend, we need to share a few horror stories that have occurred in dealing with medical professionals who did not perform as legally required when it came to Pam's records. None of the examples have been exaggerated in the least.
+ Ten years of detailed medical records, covering the period from early 1986 through mid-1996, were irrevocably lost. Yes, that means forever. These records had supposedly been transferred from a clinic in Arizona to one in Oregon. When Pam's doctor in South Dakota requested the records from Oregon, he was advised that they had nothing--Arizona had never forwarded them up from the southwest. The clinic in Arizona swore they had forwarded every single available piece of paper and that Oregon must have lost them.
+A doctor in Montana refused to give us a copy of her records at all, even though most of them (five years worth) had literally been handed to him by us in the first place. His attitude toward my wife was terrible, and he was literally willing to become physically violent. Both Pam and I are capable warriors despite her terrible disabilities, but getting into a knock-down, drag-out battle with an M.D. in his own office in a small town did not seem advisable. Five months later, that doctor suddenly left town without warning. Other former patients were missing their records as well; we were far from the only victims. The concensus was that this particular physician had maliciously destroyed the records of every patient he disliked, and that list was rather extensive.
+ A number of doctors and physician's assistants have placed inappropriate comments in Pam's files over the years. This of course explains part of the reason they would prefer she (the patient and therefore legal owner of the files) not see them. Examples of such out-of-line file entries include:
---"Patient is a toothless 45 year old woman with...." That entry conjures up a really negative image, perhaps a bag lady or a speed freak who has destroyed her own teeth through drug abuse. Shortly before that entry was made, we had finally found a dentist who agreed her teeth were poisoning her and should be removed...but he messed up the dentures badly, making her look like Bucky Beaver on steroids when she wore them. We were in the process of forcing the dentist to have them remade to the proper size at that time. That entry, when we found it, broke my Pammie's heart.
---"Patient cries for no reason...." As with most entries over the past 12 years, I was present when that observation was made. PAM DID NOT CRY ONCE DURING THAT APPOINTMENT. Not only that, but we had already confirmed via an MRI that she had (has) some beginning brain demyelination, resulting in terrible headaches, balance problems, and a whole host of additional challenges. And if THAT weren't enough, Pammie had just recently lost her mother. Even so, her emotional balance was impressive. The doctor's was not.
+ Many years ago now, long before we met in 1996, Pam's ex-husband rushed her to the Emergency Room with a shattered shoulder. She had bucked off a horse and landed on a boulder. The doctor on call was DRUNK and did more damage than the original injury.
This article would have to be a full length novel to list EVERY such incident in my wife's life, so we'll stop there for now. The next step, obviously, is to let the reader know what we have learned to do to minimize the damage done by such less-than-professional behavior by so-called professionals:
1. Any time there is a need to change doctors, request a copy of your records to hand carry with you to your new health care provider. And always make an extra copy for your personal files.
2. In our experience, MORE THAN HALF of the medical folks around the country will try to AVOID giving you your own stuff. They will say, "Oh, we don't do that! Have your new doctor call us, and we'll send the records to HIM!" That is a flashing red warning sign ten feet tall!! There are three ways we have managed to get around that roadblock, as follows:
A. We tell them we're going on vacation and need a "travel copy" of Pam's records "just in case". Since she really could "wake up dead" on any given morning, this has worked for us more than once.
B. We tell them, "You sending the records to the new Doctor would be all right, EXCEPT that we may have to go through several to find one who can work with Pam, and we don't want you to have to be copying out a new set and sending it off every week for several weeks, huh!"
C. ONCE, when the resistance was pretty ferocious (but not QUITE as ferocious as the Doc who was ready to go to the mat), Pam had an inspiration. "Oh, that's okay," she said sweetly, "You can hang on to them. I would like to take a quick look at the file, though; would that be okay? I just need to remind myself when it was we changed medications, and which ones, so I don't sound like an idiot when I talk to our new Doctor..."
The nurse brought the file, made the mistake of turning her back...and we booked right out of there with the entire file and never went back! Call the cops? Nah. No problem. They legally WERE her files, after all!
3. When you do get those files, read every page with extreme care. When we shifted Pam's records from a Montana clinic to a new doctor in Arizona in 2005, we were enraged by what we found recorded in some of the pages. There were references in those papers to my wife as a probable hypochondriac (she is anything but) and me as a probable lowlife character referred to as "some guy". (We weren't married on paper yet at that time but had been together for nearly six years.)
4. Don't be afraid to censor the doctors. I removed nearly twenty pages from that Montana file without changing the true picture of her deteriorating health one bit. Any MD reading the unexpurgated version would have immediately assumed Pam was at best a loser and I was probably a criminal. By cleaning up the paperwork, she got a fresh start with her new Arizona physician. That man, an overworked Internist, started out extremely crabby but in the end became one of Pam's biggest fans, realizing full well that instead of faking illness, my honey fakes WELLNESS.
5. If censoring the paperwork is not a good option, write some cover notes. From Arizona, we moved to eastern Colorado. A small town doctor treated her there for just five months before I moved her over here to WESTERN Colorado. That EASTERN M.D. had, sure enough, put in some nasty, insulting comments that implied Pam was just pretending to be terribly ill. But he didn't have reams of entries, so deleting even a single page was out of the question.
At that point, I tried something we hadn't done before: Instead of eliminating pages, I wrote three pages of commentary on the "old" Doc's inaccurate observations. Well ahead of Pam's first scheduled appointment, I took the updated file with a cover note to the new clinic, asking BOTH the new Doctor AND his nurse to PLEASE read my "HUSBAND'S COMMENTARY" before looking through the rest of the file.
To our pleasant amazement, they both did! Her newest physician is also an Internist, like the gentleman with whom she did so well in Arizona. He clearly recognizes the depth of her disabilities, and he actually listens to what we have to say. His nurse is equally compatible with us and even reminds us both of my sister, Harriet, who is a Registered Nurse in Montana, and whom we love dearly.
Certainly the steps outlined above DO add up to extra work. We have found, however, that the struggle is well worth the effort.
Thanks for reading,
More about the author and his wife, Pam:
http://www.poetic-humor.com
An overview of the sometimes murky legal opinions regarding ownership of a patient's medical records: http://en.wikipedia.org/wiki/Medical_records
The reader will note that throughout the above article, the author has taken the position that all medical records are the sole property of the patient. However, the Wikipedia entry on this topic makes it clear that a court might find the entire subject to be an alligator-filled swamp of controversy.
An in-depth discussion of the many reasons why knowing your own medical history (in detail) and maintaining your own set of medical records makes good sense:
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