As doctors, we’re usually pretty good at recommending treatments for different illnesses. But we definitely struggle to help patients manage these illnesses. That’s because our mindset from the start of our education is to think about the disease and the correct scientifically validated answer. We rarely explore or think about the very unscientific unpredictable element of disease; everyday life.
Recently, I had the privilege of seeing a patient with one of our bright house staff that illustrated the above point. Briefly, it was a young patient with poorly controlled Type 1 diabetes with repeated hospital admissions from inconsistently managing her complex medical illness. The patient blamed her inability to manage her diabetes to difficult living circumstances related to her parents and her boyfriend
After telling me this very complex medical story, I asked the resident what we should recommend to her. Right on cue, I got the technical answers I needed to hear in an academic setting. We talked about checking blood sugars frequently, increasing her insulin, improving her diet, carb counting and stressing the outcomes associated with diabetes ravaging a body.
I then asked him, how would we going to get her to do these things when it had appeared this advice had already been rendered to her several times before. Not surprisingly, I got a bit of a blank stare.
The first thing we did was recognize she had poor health literacy. With that in mind, our goal was to explain the disease in simple terms, advocating for consistency with just a few recommendations that would ensure she has more insight into her disease while allowing her achieve some semblance of success.
The bigger question was, how do we get her to manage this complex disease successfully long term? But before we figured this out, I asked the resident what made him spend so many hours studying and working so hard as a resident. He told me, it was his hope to have a successful gratifying career while being able to share in a happy and healthy life with his family and friends. With that answer in mind, the both of us went to see the patient.
After spending a few minutes discussing diabetes, I posed a similar question to our patient. I asked her, as a young woman with her entire life ahead of her, what was she looking forward to that could help motivate her to manager her diabetes more aggressively. She kind of smiled, looked down and the floor and couldn’t give me an answer. I pressed her for an answer again, and she told me,
“I dunno, just waitin.”
She wasn’t waiting for anything in particular, but just for anything good to happen.
With that, it became painfully obvious that she was also afflicted with hopelessness. Though there isn’t a diagnostic code for that, its a chronic illness, that persistent grey cloud and lack of hope that we also need to manage in chronic illness in the poor and downtrodden.