The Participatory Patient

I am past the stage in my life that I accept everything a doctor tells me without question. I’ve come to realize that they are specialized and trying to meet patient expectations that can vary considerably. There may be some patients that always want a medical procedure or drug to solve a perceived problem since that is what my doctor seems to expect of patients. My expectation is just opposite; I want to avoid drugs and medical procedures unless absolutely necessary - where it is very clear that the benefit to me is greater than the risk (both short and long term).

I like the standards of care but expect that they are tweaked with data from my particular test results. And I expect the doctor to be current on the recommendations from analysis of similar situations (i.e. the big data of medicine) and be able to clearly explain their rationale for me.

But it is hard to be a participatory patient…and hard on doctors to with new studies coming out all the time and not necessarily in their area of specialty.

The situation that started my thinking about this was a recommendation that I get an ultrasound guided needle biopsy on a thyroid nodule. I did a search and discovered that my nodule was the minimal size for this recommendation. When I met with the surgeon, I brought this up and he admitted that it was ‘low risk, low value’ but recommended that I go ahead and have the biopsy before the nodule got bigger. I acquiesced – but it was marginal.

The procedure was done and then the results came back via the surgeon’s office a few days later: the nodule is benign and I was told to have another thyroid ultrasound in 6 months. In checking the literature, I discovered that new guidelines re thyroid nodules came out from the American Thyroid Association in January of this year…and their recommendation after a ‘benign’ cytology from a biopsy is 12 months for a thyroid ultrasound.

The net of all this is - if I don’t challenge the doctor’s recommendation the ultrasounds will be done more frequently than the guideline and that increases the cost to me (both in $ and time) and to my insurance company.

Now I’m beginning to wonder about the timing of a lot of diagnostics and checks. It is hard being a participatory patient!