I recently asked my dad if he ever reads the health section of the newspaper.
He said "Nope, never. That's for people who are sick."
My dad is 84 years old. He's paralyzed on one side of his body and suffers from multiple, serious chronic diseases and conditions. He not only doesn't think of himself as sick, he pays little attention to symptoms that might warm him of an infection, or increases in his paralysis, for example. His body doesn't seem to make much sense to him.
Needless to say, it's difficult for his many doctors to get a good report of his relevant symptoms, since he can't distinguish relevant from irrelevant, and besides, he'd rather be reading Shakespeare.
When I read reports of physicians urging their colleagues to attend more closely to patient reports of symptoms, like the one described in The New York Times on Tuesday, I am at once grateful that someone is raising the point which is a good one and simultaneously bemused by the clear assumption that we patients know what symptom reporting actually means.
Now, I imagine that anyone who has found and is reading this post might share this assumption. Whether we are patients or professionals, we have been immersed in and interested in - healthcare for so long that we simply can't imagine how someone wouldn't know how to report symptoms to their doctor after all, how hard could it be to tell her where it hurts?
But, I have interviewed many people who really don't have a clue about what constitutes a symptom, how to describe what they feel or specifically what might be useful for their provider to know to make a good diagnosis. For whatever reason, they don't naturally organize their experience in a way that is consistent with the information needs of their physician, resulting in miscommunication and probably (at the least) an inefficient, if not incorrect, diagnoses.
First, that one remedy for this problem may be straightforward: For a start, providers could spend a couple minutes teaching their patients who seem to be struggling some simple rules about what counts as a symptom and how they can tell their doctor about it so that it helps her do her job. Clear expectations are helpful to everyone.
Second, that people who spend their days delivering (or receiving, for that matter) health care often forget how much they know and how little those of us who are oriented elsewhere do. There is no reason for most of us even those of us with multiple chronic conditions to understand or remember the norms, rules and routine practices of health care. Our lives do not revolve around our care: we view our contact with our providers as occasional, one-shot experiences.
Overlooking our lack of familiarity with health care, renders us helpless. Not only do we not know many things about our care we also don't know what we don't know. Without recognition of our cluelessness by our providers and a little help to assuage it, we don't even have the option to participate in our own care.