April 2, 2001
Your Medical Records
David Bradley - Editor
File this under Strange, but True. It began with a posting to Club-Mets-BC a Metastatic Breast Cancer Online Support Group on www.acor.org/club-mets-bc.html from Gayla Lacatena in California:
My oncologist gave only oral reports, nothing written. Following a series of Tuesday infusions, I asked him about the written reports. His attitude was, Oh, yeah, I have those, I'll give you a copy before you leave. But his tone of voice was more like, Why are you asking for those? I'll give them to you if you insist, but... He didn't direct his assistant to make copies of anything when he left. I had to ask her myself. Once I'd read them, I had questions that the oncologist should have raised, like, There are some things on your report you may want to discuss. I know you are concerned and maybe I can answer some of your questions... Nope. He went golfing in Palm Springs; which he is perfectly entitled to do. I'm still waiting, however, to ask him what are the possibilities, and treatments, for what turned up on my CT scans. And the waiting is the hard part.
Is Gayla just paranoid to wonder if her doctor might be unwilling to give out a simple document? Well... no. Because she's not the only one who's had to ask two and three times, waiting weeks in between, without ever seeing a copy of the report on the liver biopsy, the bone scan, the core biopsy... Because, although you pay for the procedure, or someone pays on your behalf, contrary to popular belief, medical records are the property of the health care facility, not the patient. Some states have laws that require the health-care provider to furnish copies of medical records on demand. But others do not. In fact, it can be surprisingly difficult to even get a good look at your medical records.
Most disturbingly, our example took place in California. Our legal mavens advise us that, in the Golden State, and most of the others, patients or their representatives must be allowed access to, and copies of, their own medical records (California Health and Safety Code §123100). This provision extends to doctors, hospitals, mental health facilities and clinics. Generally, the health facility will charge a reasonable fee for copying records. It may seem outrageous, but then, what in this life is free? Copying ain't free, ink ain't free, postage ain't free...and x-ray film really ain't free.
If you receive care in a federal medical facility, you have a right to obtain your records under the Federal Privacy Act of 1974 (5 USC 552a). There is web access at www.usdoj.gov/foia/privstat.htm but most medical offices will want you to make your request in writing.
All the laws, we are solemnly assured, are on the patient's side. Well, yes, sort of... And yet, asked specifically, too many doctors and oncologists still say they prefer not to do much more than confirm that the sample was malignant.
Now, let's be clear. We don't expect anyone to sit down with a frightened, bewildered patient, and grind through every gorey detail, all at once, on the first visit. Few of us could cope with that.
But we are talking about patients who have been seeing their doctors long enough to have formed some sort of relationship... but haven't. Maybe they are a minority of a minority, but some are still being told, in essence, not to worry their pretty little heads over the meaning of cell mitosis or S-phase information, or the other two-bit words.
Many will point out how much better, more open and honest,the situation is today; and they will be right. Only 20-odd years ago, it was still standard practice not to even tell the patient that they had cancer until everyone else in the family knew... and sometimes, not then.
Yes, it's better today. But it's still so bad that a lot of patients don't seem to know that the tumor in (for example) their liver is measurable; only that it might be significant. But, bear with us for a moment: when the radiologist reads scans, x-rays, etc., those are measurements of masses. Previous images are used in comparison (indeed, this is the main reason they keep the old films, in order to measure the effect of treatment, whether the biomass is shrinking, and by how much... e.g., the mass in the upper lobe of the liver has shrunken by 25%.
Confused? Of course, because this is a basically incomplete kind of explanation. It's not hard to see why some doctors might think laymen see this sort of thing and either freeze with boredom or go completely postal, but our experience indicates patients today are a savvy bunch. They look up terminology they don't understand; and when doctors and nurses pooh-pooh their questions, these patients set out to educate themselves as to what it all means. They don't settle for starry idols who snap the rubber gloves and say, Yep, it's cancer alright, yep, it surely is. Here, have a tranquilizer.
What we are dealing with may be rare cases, but listen up: There shouldn't be any such cases. It's the patient's health, the patient's body. Maybe some patients don't want to know. Others do. The least a doctor can do is to find out who is which.
Of course, it's all a bit like telling your child about sex. Be sure you're answering the question that IS being asked, not some other question you think they want to ask. The patient, too, should be clear about what's wanted. It's no one's responsibility to read anyone's mind. A receiver is just as vital to communication as a broadcaster.
Doctors, oncologists, radiologists, should offer to share as much information as the patient wants. Is the ER/PR negative, poorly differentiated, could it become resistant to Taxol (or whatever)? Don't baffle with terms of art, explain what wants explaining. Show the films from the scans, when the report isn't clear exactly where the metastasis is. Let the patient bring you the X-rays, unless they seem likely to lose or destroy them.
Any tumor will ultimately become resistant to any one treatment. The nature of the beast is its ability to change, to mutate, to develop resistance. We're not recommending actually looking over anyone's shoulder as they work; but when someone -- anyone -- is monitoring lab work, the result ought to be more careful lab technicians -- which should translate into healthier patients. It may take up a few extra minutes in an overly busy day, but some people may only have a few minutes...and closer attention might turn up such kinks in the system as the radiologist we heard of who couldn't tell left from right, so that it seemed the cancer danced from one lung to the other...
In fairness, though, even when all else is straightforward, sometimes measurements are hard for the best of radiologists to interpret. The CT is, after all, pictures of slices, which have to be put back together. They are, in short, two dimensional pictures of three dimensional things; and written reports usually give somewhat less than precise sizes (for example, approx 3 cm in width)
Again, just to be clear, the best thing is to get copies, not the originals. We recommend against EVER allowing the original films, scans and such to be moved from one medical facility to another, because you cannot assume that they will catch up with you when you arrive for that 2nd opinion. And, if they do, just pray that they will get back to the original location... where someone may want them for comparison, someday. How often we hear the doleful refrain, the films never were returned (lost, with so much else, in that postal vat, deep in the beyondmost)...
It's curious, but, despite all the political babble about patient rights, the trend often appears to be in the opposite direction. Our founder, Alexandra Andrews, once asked an oncologist what seemed a simple question, only to receive the lofty answer, I'm not going to play that game with you.
Perhaps it is rather like a game, to some. Maybe it's the malpractice suits, maybe it's the suits who work at the HMO, maybe it's the fine old tradition of Now sweetie, the doctor knows best... but it troubles us deeply. It doesn't seem fair to treat people as if the truth would inevitably push them off the deep end. Maybe some medics don't think they have time to figure out who can handle full disclosure and who needs candy-coated apopthegms, but if any given patient insists on the truth about their own life, their own death... who has the right to withhold or fudge the facts?
One oncologist told us, basically, that most people will not hear what they do not want to hear. He didn't volunteer information that was not absolutely necessary for the patient to know, because in his experience, patients did not remember it. This is not to say he is right; but he does have a point.
We believe, however, that people mostly have trouble hearing the things that they have not been prepared to hear. So, as the Scouts used to chorus, Be Prepared! None of us are really in control. Don't be fooled into thinking oncologists have much control, either. In cancer treatment, we fly by the seats of our pants... until our pants get tired.
Here's the skinny: If there's something you want to know, and you're not being told, it's up to you to rationally and calmly rock the boat. Because it's your boat.
Are we clearer than mud yet?
It is normal, and legal, to request and receive copies of your own scans, reports, whatever. You are not required to be the good little patient that goes along, taking whatever is handed out.
Our best, most carefully considered advice is: Read your own charts, and ask questions. There are no stupid questions, only stupid answers. As proof, try this: Anytime there is a 10% change in anything, ask about it. In many cases, you'll find that, once the medic gets used to you, he'll start looking for that 10% variation himself, and comment before you can even ask. (Why 10%? No reason. Pick a number.)
One very obvious advantage of having your own copies of your medical records is that this allows you to travel as you wish, without having to worry about getting a new doctor up to speed on your case. Or, if fire or flood or natural disaster wipes out your clinic or hospital... you've cheated cruel fate again! You'll still have your records.
But first, you have to get them. You will, perhaps, have to be vigilant, and determined. Some doctors will assure you that they'll call when they get the reports, but somehow they never do.
If they will not release your medical records, ask for a written letter of denial. Then contact a patients rights group, the local medical society, the state medical board or an attorney, and they will give you further assistance. Generally, a request for disclosure may be denied if the health care provider believes that the information will be harmful to the patient. Even then, however, the provider is usually required to disclose your record to a physician of your choice.
If you just can't wait... and if you're moderately clever... you can, sometimes, at least, see your file before your doctor does... because then, your chart is probably hanging on the door outside the examining room, maybe in a little metal or plastic bin, or lying on a countertop. Just grab it. Read it. If they have a copy machine, make your own copies. It's about you, after all. And when the doctor finds you spying on yourself, maybe he will stop thinking that you don't want to know. Some doctors we've heard of have gotten into the habit of dictating additions to the files while the patient is listening... which saves a lot of time and postage.
Sometimes, though, it's just very difficult. You might have to call your HMO's medical secretary just to find out who you have to write to when you ask for copies of your own records. You might have to argue with someone... you might have to tell people what you want.
Start with your records from the last year or so. Pick them up yourself, or have them sent by courier, Fed-Ex, UPS or registered mail (because regular mail will not be tracked until it has been missing more than 21 days). They might not be sent right away, either, so don't get paranoid too fast. They sometimes have to wait several days after faxing a report to your doctor, probably to ensure that he or she has the opportunity to give you any bad news.
Because, of course, sometimes there actually is something being hidden. It may not be anything worse than some doctor's tendency to write down unkind personal comments about your appearance or mannerisms. Their embarrassment should be less important than your health, however.
If you encounter stalling beyond the point of ordinary delay and procrastination, simply send a certified letter, requesting a copy of everything in your file. Mention the Federal Privacy Act.
When you eventually get your files, you will quite possibly be dismayed by the way reports are written. Some are full of (relatively) irrelevant information, like how full the bowels are. Others may be so brief they don't include a single measurement, or even a list of the drugs to which you have an allergy.
But what do you do when a mistake has been made? Obviously, the first thing is to determine the seriousness of the error. One of our sources had been getting scans every 4 months. It had been determined that comparisons should be made to previous scans, done at thus-and-such intervals... It was noticed that all of the scans after a certain date showed an increase, presumably because the tumor had been ablated, leaving a 2-3 cm margin all around it. The ablated area turned to liquid and took a long time to fill in...
A close rereading of the reports showed that the last two scans had been compared to much older previous ones, a small error almost missed by oncologist and patient alike. It seemed like a serious problem, until the radiologist explained that it was all done to get a better reading... a concept which confused everyone involved.
However rarely, there do creep through some really horrendous mistakes. What do you do then?
What if your records read like fiction, describing drugs never taken, incorrect reactions to medications, wrong body parts, and other bloopers? In cases like this, one solution is to be a copy cat, as follows: Make a copy of their report, make your corrections on the new copy, and finally send them a copy of your corrected copy, so that they can correct their copy. Another is to sit down with your medical provider and have your records corrected in your presence.
* * * * * *
Many persons contributed to this report, including: Melanie Aguillard Kathleen Allen, Alexandra Andrews, David Bradley, Sandy Caverly, Sammy De Roos, John Fetto, Allan Grossman, Merry Holley, Judy Kean-Lunsford, Victoria Kozak, Gayla Lacatena, Judy Nielsen, Stephanie Payne, Karolen Paularena, Patricia Smith, Glenda Strieter, Jeanne Turner, Sheila Werner, and Chris Wong.