The hogwash that one shouldn’t write what one cannot openly reveal with patients sounds good–in a perfect world where everyone is always reasonable. That isn’t the world we live in. Get real.

The medical record is not a forum for a doctor’s bigotry or paranoid insinuations. There should be nothing in the patient’s records but concrete facts or informed opinions based on science, and not wanton speculation or defamation based on ignorance and prejudice.

The primary reason most doctors wish to hide aspects of the record from their patients is because they are cognizant of the liability issues involved in this kind of defamation. It doesn’t stop them from doing it, however.

Every patient should have the right to review anything and everything that is written about them by their doctors, and to demand the removal of objectionable material where appropriate. We also need to begin to recognize in our legal system that defamation of this sort constitutes a particularly destructive form of malicious libel and increase the penalties involved, as it can result in denial of care and even death to patients.

In the grand scheme of things, things that patients agonize over are most likely not big deal, so I don’t really care to see what my nephrologist or PCP say in their personal notes… but I sure as hell get copies of any test results or hospital records in order to be an informed patient.

Yet in the end, I was surprised by a diagnosis of iron deficiency anemia by the second doctor I saw, who reviewed THE RESULTS OF THE FIRST DOCTOR’S ordered bloodwork. First doctor never took back his diagnosis, and never informed me of my tiny, pale, inadequate number of red-blood cells.

The second doctor investigated and treated me for the anemia – and I recovered, lost my palpitations and my tremor and weakness and fatique.

The first doctor also shook his head at me when I said I had pressure in my throat and that I felt as if there were something “in there”, taking up space, and that I had lost my singing voice, and that swallowing seemed a “little off” and a little difficult at times.

He examined my neck and did a cursory thyroid check, and then said “there is nothing in there” very curtly, to dissuade me definitively of any such notions, and said I had globus hystericus. I saw an ENT and after some inexpensive testing it was revealed I had a nodule within the thyroid, which was of significant size, 2 by 4 cm, not immediately obvious on visual inspection or exam, and only subtly detectable on careful exam. The first doctor never allowed that such a thing was even possible.
If he didn’t see it, it didn’t exist. Whereas in hindsight I found out that its not uncommon for exams to miss a fair number of comparable thyroid tumors – that his next step shouldn’t have been to dismiss out of hand or humiliate, but to follow up on my symptoms with a test that can see places he can’t feel on exam.

The anemia was the worst of it for me though. He told me to see my primary care doctor for antidepressants. I was sick.

Only by checking my test records could I have seen his mistake. I have never since that time failed to get my own copy of test results. I don’t trust any physician to actually pay attention to them, and if they do, to tell me anything about it, especially if it contradicts their pronouncements.

I do believe that most of the time, the physician ought to be open with the patient in describing his thinking and differentials and why… but I also believe that there are certain patients and certain situations where it may not be in the patient’s best interest to know everything their physician is thinking. It would have been better for me to not see my chart because it increased my anxiety, and caused me to distrust in my physician.

There is also the matter of lab results that are abnormal enough to earn an “A, H, or L,” but not out of the reference range enough to mean anything significant for THAT patient. Same for imaging or procedural reports that report something random but benign. A patient seeing those results and not knowing what they really mean could “freak out” so to speak, thinking that their physician has been careless in overlooking and not treating something “abnormal.”

If records are to be released to the patient, it might be best if there were someone there to go through the records and explain any abnormalities before the patient was left to scour the internet and draw their own conclusions, right or wrong. That, or there ought to be someone easily accessible to answer any questions. Of course, that is not always feasible, so I don’t have the right answer, but I don’t think that medical records ought to be open to the patient without professional explanation.

It sounds nice in theory, but it’s a huge can of worms for many patients and therefore also their providers.

If you can’t say something to someone straight away it doesn’t belong in their record.