The following is a reader take, in response to a post on whether patients should own their medical records, by an anonymous nurse.
Dear Dr. Pho,
I wish to respond to your position on patient access to their medical records both as a patient and a nurse.
If a doctor or other health professional believes their documentation would be inappropriate or too sensitive for a patient to view, he or she shouldn’t document it. I understand your concern about liability and/or difficult repercussions but if one suspects or can truly substantiate harm inflicted upon the patient or others they have the option to report it to the appropriate agency and document their concerns in that confidential report.
As a patient I make it a practice to view all of my medical records and have found significant errors. Case in point, I was seen in the ER for what seemed like a bad case of the flu but with a bizarre symptom, a reddened and edematous right leg. When my symptoms hadn’t abated 3 days later I returned to the ER only to be met with disdain and judgment by the PA as he read the results of my urine analysis. It showed an impressive array of illegal substances that I knew to be untrue and needless to say I was shocked and dismayed, not to mention the ramifications of the care received by the patient to whom those results belonged.
At the time I worked at a drug detox facility and experienced first hand the tendency of addicts to be less than truthful. So it was not surprising that my insistence that there had been a mistake was met with indifference. I insisted that they repeat the test arguing that if those results were indeed mine many of the drugs would still be in my system. Needless to say the results were completely normal, yet despite those results and affidavits from my colleagues and primary care physician, and the off the record agreement from the supervising MD, I was told that once documentation is entered into my “permanent record” it was illegal to remove it. Eventually the Chief of the ER would only concede to write in an addendum note that the results “may have” been in error.
Despite this concession I knew my credibility as a patient in subsequent visits or hospitalizations would be met with suspicion.
On a professional note, as a nurse at a well known, cutting edge medical center on it’s psychiatric unit I found a distinct difference in the tenor of our notes when patients were given the opportunity to collaborate with their nurse on their goals for that shift and were required when possible to read the end of shift note to confirm their participation and progress. Our notes took on a more professional tone that reflected objective observation, compassion for their suffering and the difficulty and promise of managing their illness.
Yes, this entailed much more time and effort on our part, but I must say it left me feeling that I made a difference in honoring and alleviating another human being’s suffering and validating the truth that they indeed had a voice and were the most important person on their treatment team. On a more practical note, this manner of documentation as a part of treatment resulted in briefer hospital stays and decreased recidivism.
In a climate where mental illness still carries significant stigma, sadly I must say among some health practitioners as well, we would do well to consider how we phrase our documentation and ask ourselves: “Would I feel awkward or in jeopardy of liability if my patient read my note?” If the answer is yes, rather than being fearful of a patient’s reaction, I would propose we take an extra moment to re-phrase our documentation.
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{ 6 comments }
I think this is an excellent perspective.
If you can’t say something to someone straight away it doesn’t belong in their record.
I disagree. As you said, and as others have said, sometimes there are things you need to write in a chart that the patient may not like. I used to be a total hypochondriac and a frequent flyer. On occasion, I got a hold of my chart notes for various reasons, and sometimes I was offended at what I saw. I was incensed that the #1 assessment was anxiety in one visit when I had presented for occasional palpiatations and fine tremor. I could SWEAR I was dying of something weird. Was I? No. Was my doc right about the anxiety? Yes. At the time, I felt like he wasn’t listening to me and taking me seriously, but I realize now that he was – and considering my age and other medical history, it really was the most probable differential diagnosis. He may not have wanted to say it to me because I would have rejected it, but it was his duty and good medical practice to write it in my chart.
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.
Christine, I was once diagnosed with anxiety, related to complaints of palpitations and fine tremor.
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.
As a person with adult-onset Minimal Change Disease, reading the initial chart during my first nephrotic episode is slightly disturbing. The ED marked that I was an obese female with no signs of swelling or pitting, but after responding to treatment and losing 30 lbs of water weight after my week-long hospital stay, I recognize that the initial record was wrong, but the word “obese” will always remain in my “permanent record.”
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.
Unfortunately, it is not uncommon for doctors to write derogatory or outright libelous comments about their patients in the medical record, and these comments can and most likely will have an impact on patient care by prejudicing other doctors. This is particularly true for chronic pain patients, who are almost guaranteed to face this kind of abuse at some time in their journey through the medical system.
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.
I disagree with this psych nurses editorial. Hasn’t she taken care of patients who are dangerous threatening bullies? What does she do then? Whitewash their behavior in the record to avoid offending them? Doesn’t this put the patient at risk of bad care when the doctor makes decisions based on that record? I don’t think a fixed rule applies here. As a psychiatrist I always treated a request to view a record, within the limits of the law, as another therapeutic matter. If and when I thought it helpful, I agreed. When I thought it destructive of the treatment process, I did not. One consideration in an inpatient setting is the freedom of the rest of the staff to document objectively without being bullied over it. If they can’t freely write truthfully, then I don’t get the truth.
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.
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