Patients and Full Disclosure

I was reading a story written by a young rheumatologist discussing how some patients search the internet for information on an illness and how their search can impact the visit to the doctor.  She admitted that those patients often come with more knowledge and better questions.  Then she discussed the impact, positive and negative, of sharing her notes with patients after an appointment.  A colleague of hers had stated that the only way a patient could truly benefit by having their medical reports and notes is to have attended medical school.  She closed the article with this quote:

If we are being frank, we ought to admit that there are limits to what a patient can understand, and full disclosure may not always be appropriate.”  (article from Rheumatology News)

It started me thinking.  What should a doctor tell a patient?  How much information should they share?  If a patient wants access to that information, does a doctor have the right to refuse?  And why shouldn’t the patient get to see what the doctor writes in his notes.

Ten years ago I had some really strange symptoms that my former primary physican showed little interest in.  It was a little more important to me as I, the gal who doesn’t like doctor’s appointments, actually ended up in the emergency room twice.  At that point I started asking for copies of all labs and kept summaries of my symptoms and experiences and took them with me as I traveled.   After my RA diagnosis several years later, I was diligent in maintaining copies of my labs and other diagnostics.  It makes me feel more a part of the management of my disease to see the results each time.  I want to be knowledgeable.   This is my health, I have a tremendous interest in it.

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I cannot help but connect this young rheumatologist’s feelings to a recent experience in the veterinary world. I took one of my dogs to a vet specialist.  We had a tech we have known a while and respect a lot.  I asked a question and in return got a lecture – a not very nice lecture.  She told me that people should just stay off the internet as they couldn’t understand what they read, that we were wasting the vet’s time with needless questions and should just let him do his job and not interfere.

I left that office insulted and angered.  It’s my dog – I have every right to ask a question as I am his medical advocate and, as far as I’m concerned, the vet has the responsibility to explain and answer questions.

I feel the same about my healthcare.  I ask a lot of questions.  I’m always prepared when I go to an appointment and do not want to waste the doctor’s time or mine, but it’s my life, my health and I have every right to read, research, ask questions and have copies of my medical records.

While I understand the rheumatologist’s quote above and agree that patient’s may  not know or understand everything they read, I do believe it is the doctor’s obligation to share copies of medical reports, including their notes, with the patient if they have an interest in that information.

I hope one day all doctors realize the importance of partnering with the patient.  It’s the very reason I left one rheumatologist and sought another.  When a patient is part of the process, they are empowered and that benefits the patient as well as the medical team.  It fosters trust and respect between the patient and doctor and it strengthens the ‘partnership’.  For those reasons, I believe full disclosure is appropriate.

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2 thoughts on “Patients and Full Disclosure

  1. I am a big believer in being our own advocate. After all it is our body! I left my last rheummy because I got 5 minutes with him. If he couldn’t fix it with a new script or an injection, his eyes glazed over as he listened to me. I moved on. Happily! My new one spends a minimum of 45 minutes with me each visit and always calls me with lab results herself. I know when I call her office she will know my name. I’ve even met her on the street and she has stopped to say hello. I did butt heads with her over methotrexate. I had been on it since 2003. Every time a doctor increased the dosage above 3 pills a day (7.5 mg) I would pop new modules and my old ones would grow bigger. I told her when she wanted to increase it, but she discounted my observation. 6 months later she saw what new activity I had and took me off of it completely. Within 3 months all nodules went away. Gone! I hope she learned to listen to the patient’s history before she fell back on her training. Oh, and I looked it up on the internet (swat my hands!) and it says right on one of the big medical sites that MTX can cause nodules in some patients.

    Oh, and if there is something major about my condition that would impact how I manage it at home, then tell me! Don’t just write it in my chart.

    • Thanks for sharing, Marcia. It’s great when you find someone who truly partners with you.

      I had a problem when they increased my MTX and, like you, had read the drug information sheet. Asked the rheum about it and his reply was ‘it doesn’t do that.’ Then I asked why they would put it in the information sheet that accompanied the drug. No response.

      Personally, I think you should get a copy of the notes from every visit – how else would you understand what’s going on.

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