Friday, September 23, 2011

Hey Doc: Can I get some data on this please?

My five year-old has developed a type of sleep apnea caused by his large tonsils that flop back and block his airway when he lies down.  He's otherwise healthy and doesn't suffer the frequent bouts of tonsillitis that led to the removal of my tonsils at the tender age of three.  I thought it was great because whenever I pushed my call button I got a cherry popsicle.  To this day I crave popsicles when I have a sore throat.  I haven't missed my tonsils, but I'm hesitant to automatically sign my son up to have the surgery.  Why?  Because I don't feel like I can make an informed decision.

I understand enough about risk to know that it is probably far riskier for my son to ride in a car than to go under general anesthesia to have this procedure.  But I don't KNOW that.  Whatever I do know I've learned by scouring the Internet and soliciting advice from friends.  I certainly wasn't told your son has a 1 in X chance of mortality from the general anesthesia.  And I wasn't given any context to interpret that risk, say for example, your chances of dying in a plane crash are roughly one in a million.

There's also the matter of being informed about treatment options, including the option of doing nothing.  The number of childhood tonsillectomies for tonsillitis went down dramatically when data from case studies suggested similar rates of sore throats for kids who had their tonsils removed and who didn't about two years after the operation.  When I asked what would happen if we didn't do the surgery I received a somewhat vague answer in the form of what I assume are largely associational studies linking sleep apnea with growth restriction and ADHD.  Common underlying cause anyone?  I specifically went to this doctor because Perrin's primary doc said that this specialist was not likely to take the tonsils out unless "they really need to come out."

I believe that this doctor and other doctors I've known and received care from really do have the best interests of the patient at heart.  We have been on the receiving end of extraordinary care and literally life-saving interventions by many talented, dedicated doctors and nurses.  The more experience I have, however, the more I realize that I am more of an expert on my child than anyone (except maybe his father).  The responsibility of making this decision for my child to undergo a certain amount of risk in order to hopefully achieve an outcome of improved health, however, is not an easy one.  It keeps me awake at night.  It's also not made any easier by my feeling that I simply do not have the data I need to make this decision.  After all, doctors are specialists with a certain kind of training.  Their training is certainly impressive and allows them to greatly affect the health of an individual.  They will apply the training they have but simply because humans and the disciplines they create must necessarily be defined and therefore limited, they will only have certain tools.  In this case, the tool is taking out my son's tonsils.    

What frustrates me is that I am not given more information to make this decision by those recommending it.  Hey, doc, I can read.  The public education system actually did a pretty good job for me and if you pull out a summary of articles on the topic I can probably follow along.  Even if I was not privileged to have a great education or language skills, give me the data anyway.  Maybe I could get someone to help me read it.  In any case, I would rather be overwhelmed with a massive amount of information than overwhelmed with the feeling that I can't make an informed decision.

I understand and appreciate how lucky we are that this is a fairly minor issue.  Ultimately we'll do what we think is in Perrin's best interest.  But we'll educate ourselves as best as we can before we make the decision.

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