“But I took my medicine!” I hear this down the hall from a patient room. I’ve heard this enough times in my work as a psychologist that I immediately begin to assume what is going on in the room. In my mind I imagine the child down the hall is probably being told that labs came back showing little to no medication in her system, even though she’s on a considerable dose for a serious problem. She has been admitted and she’s in bad shape; in lots of pain. The medicine they wanted her to take could help her body get better, or at least keep her problem from getting worse. And she is adamant she has been taking it, perhaps also implying she has been taking it every time she was supposed to take it. And… the doctor or nurse talking to her doesn’t think she is being completely honest. They shake their heads: “But honey, numbers don’t lie.” She then looks to her mother for support but finds, instead, a disapproving look.
I could be wrong about my assumption (my daughters might say I am wrong more than I should be!). Nevertheless, this issue of medical non-adherence –failing to follow the medication, diet and lifestyle recommendations of a physician or medical team for a particular medical problem- is far more common than I wish it were.
I think, in moments like this, that a pediatric patient might see herself in a boat, all alone, supposedly in charge of making sure her boat doesn’t capsize, or sink, or head into a storm. And that just isn’t fair. There might be room in the boat for her mother and father, but if they are there, I am guessing there are times they are doing their own jobs on this boat. There might even be a physician or a nurse; at times a psychologist might even hop aboard. However, to the child, with the oars in her hands, she might be the only one feeling the full weight of responsibility for medical adherence. And that is the heart of the problem. She can’t do it alone.
I argue our young patients need to have boats that are big enough for a whole crew of supporters who are responsible for helping make sure they take all the medications; follow all the rules. In fact, I argue that those patients need not just to see, but to feel, that there are co-captains prepared to take the wheel, turn the oars, ready the sails, whatever is needed, because they are partners in the success of the boat (and the young boat-captain!). Yes, they need to know they are steering their own boat, and yes, as they get closer to adulthood they need to be able to do more and more of this on their own. But how many children are ready to be captains for such a big job – keeping their bodies going when they have medical problems that are far greater than pimples or bad hair days; when not keeping good track of medications could mean, well, death? We love our children. And when I say ‘we’ I mean mothers, fathers, physicians, nurses, dieticians, social workers, pharmacists, psychologists, and many others. I want us to find better ways to partner with our littlest captains, so they can grow into their jobs successfully, and without so many disapproving looks and avoidable hospital stays. Who’s with me?