Playing doctor.

Amy Welborn’s not sure what to say at the doctor’s office:

…the doctor said, “What we generally have is three options….” and he ran through them quickly, and then looked at me and said, “Well, what do you want to do?”

Of course, I’m sitting there trying to still sort of what “lumbar” and “thoracic” are all about and trying to imprint in my brain of Notoriously Poor Retention whether he said a certain disc space was a bit small or large, and he’s presenting me with three options for treatment and I’m supposed to choose one? Now?

… I sense what it is: a definite move away from the paternalism of days of old, because, of course, we patients should have final say over our treatment options… But still…I couldn’t help but wonder what I, not exactly a professional orthopedist, could knowledgeably decide without a bit more input.

… Not that I’d define what I’ve described as a “problem,” and I should mention that the reason I moved from OB/GYNs to midwives was precisely because of paternalism and attendant issues,  but this tentativeness gives me pause and a little crack in the my confidence about the care I’m receiving.  I like my rights, but I’m not sure I’m exactly competent to direct my – or someone else’s – medical treatment.

I’m convinced the average person, sufficiently motivated, and in touch with the necessary resources, can become competent to direct her medical treatment.  And something like a serious diagnosis, or a lot of pain, can be a great motivator.  Faced with Amy’s situation, you can take the information home and research it in the library or online. 

So you didn’t go to medical school.   Most of what your physician learned in medical school is probably irrelevant to your condition. Not everybody has the time and inclination to acquire the broad general knowledge of a trained physician; but if you’re sufficiently motivated to learn about the narrow area of a specific condition, you can learn enough to direct your treatment options. (If this sounds overwhelming, just consider how much the average NFP user knows about NFP relative to the average OB/GYN.)

My daughter suffered a severe urinary tract infection at a few months old, and in the week that elapsed between the treatment of the acute infection and the follow-up appointment at which we were to decide her long-term preventative care, I was able to identify the typical course of prevention, figure out ways we could make it less aggressive or more aggressive, find out how risky are the radiology procedures that would be recommended, decide which facility we wanted to perform them, prepare for cushioning my daughter from the stress of the upcoming experiences — plenty of useful things.

Unless your physician knows you very well, he is not an expert on what’s important to your family.  Something that’s important to you may not seem important to him.   It goes without saying that this is crucial wherever ethical questions are involved — end-of-life decisions, reproductive conditions, experimental treatments.  But it’s true for ordinary decisions too.  For example, I was concerned about the effects of a daily antibiotic that is usually prescribed for my daughter’s condition.  I was worried it would upset her intestinal flora and lead to yeast overgrowth, which van be a real problem for nurslings.  To my relief I learned that the recommended antibiotic is one that resides almost wholly in the urinary tract and doesn’t migrate to the gut — a detail that the pediatrician either didn’t know or did not consider important enough to mention to me  — and this information helped me decide to consent to the antibiotic instead of a less aggressive option. 

Not everybody is interested in independently researching their own medical conditions.  Some are more comforted by avoiding decision-making, letting someone else call all the shots and possess all the knowledge.   When my mother was first diagnosed with stage III-B adenocarcinoma of the lung,  a bit more than five years ago, my brother was the one who passed that news on to me.   I had never heard the term "adenocarcinoma" before, and didn’t know what III-B meant (neither did my brother); I hung up the phone and turned on the computer, and in less than an hour I knew just how bad the news was, the average length of survival, and also what the various treatment options were for her.   But my mother did not actively seek out any information, and waited for the doctor to give her information as he saw fit.  By the time she finally asked the doctor to tell her how much time she had left, and the doctor told her, one-third of that time was gone.  As far as I know my mother never opened a book or read an article or anything else about her condition, never compared treatment options, never questioned what the doctors suggested.   

It’s not what I would have chosen;  I still find it very hard to understand, now that she has been gone for four years.  Perhaps it reflects different ways of coping with difficult news:  trying to gain control (however illusory) by gathering as much information as possible, versus trying not to have to think about it very much. 

I’m heavily biased towards the former.  I believe that by learning more, you always get a little bit of control that isn’t an illusion. But I concede that others might be able to enjoy life more by letting someone else think about what is frightening, what is complicated, what is serious.