Sunday, February 4, 2007

Medical non-compliance

A selection of Frost and Wren last night.

For the past two nights Wren has slept one three hour period. Sometimes these begin at 9pm so I miss part of it but its still a bit improvement on the 90 minute sessions he was having a week ago. Last night he slept 10-1am, 1.30-4am and then the bad grunty-snacking period until 7am. I don't think I slept after 6am. He also alarms me at night by dreaming and breathing very fast at times which makes me alert and sleepless.

This morning he seems okay. He nursed well in the night and didn't sweat at all and he woke smiley. I shall wait and see how he does today.

Anyway, the title of this blog relates to the book I am reading The Spirit Catch yous and You Fall Down about a Hmong refugee family with a sick child interacting with the US medical system. One section deals with the way they feel that compliance with medical advice is optional and routinely alter medication and administer the medications they like. While the book addresses the deeper issues of the cross-cultural misunderstandings I was thinking how I am as the patient or parent of a 'sick' child and whether I am totally obedient.

I find that I am not.

If there is an area in which I am not fully educated about the reason for a therapy or subscribe to an alternative I don't comply. An example is the iron supplement Wren is on. I suspect it is causing him constipation (he strains a lot when he is on it) and am also of the view that iron levels in babies are over-rated. However, I am concerned that he not be anemic in case of future surgeries so I have decided to administer his iron every second day. I will discuss this with our pediatrician but meanwhile I am quite happy to do what I think is best. I also didn't use the cortisone my doctor prescribed because I don't like cortisone but I took the prescription "in case" I changed my mind.

I wonder if I am atypical in doing things a bit my own way and how difficult this must be for doctors.


Allan Showalter, MD said...

First, I wish you all and, especially, Baby Wren the best.

You are assuredly not atypical with respect to healthcare compliance. ("Compliance" is a horrible term but it's the one most recognized.) A rule of thumb is that, across the board, one expects 50% of patients to be non-adherent to a treatment plan. This is a bigger problem for chronic disorders.

The fact that you tell your doctors what you're doing, however, is very helpful (and, alas, very unusual). My deals with patient adherence to treatment. In respect to your query, you might find these two pages useful:
Noncompliance Prevalence
Noncompliance Costs

Best of luck.

Shannon said...

Allan, I found your article/site very interesting and am surprised I hadn't thought of this or encountered it as an issue before.

You may find the book I was referring to interesting. It relates a cross-cultural case in which parents widely reinterpreted the medication prescribed to control their child's epilepsy. It is fascinating and I hadn't realized it was such an issue within our own culure(s).

On reflection, I pride myself on always completing courses of antibiotics but otherwise feel that medication and exercise prescriptions are elective to the extent that I am the best monitor of my well-being. In general, I use medicine when I believe that they do me benefit.

Why don't doctors ASK whether a patient has completed the course of medicine or treatment? I would answer honestly if asked but there is never any discussion of qualitative issues in the 10 minutes of physician contact.

During my pregnancy, the nurse asked offhandedly whether I was taking my prenatals. I said "no, just folic acid" She looked shocked. She asked if I was taking the iron and I told her I'd switched to a liquid iron I tolerated better. That stunned her a bit too. Surely a bit of feedback would help?

Some of us would welcome being regarded as more than passive recipients of medical facts.

Anonymous said...

That is such a good book alot of the ICU doctors at childrens has read that book which I was happy to hear because of all the culters that do come through the ICU. (we were there a while) Another good book is the kite runner
wyndi and izzy