Only Anecdotal

I was talking last week to a group of intensive case managers in a big primary care practice that is moving to a medical home model.

Now, I like my work a lot, especially when things click, and it really is a matter of helping people navigate the system. I like it even better when I get to tell the changemakers–legislators, heads of healthcare systems, etc.–what people really want and need.

The problem is, people often do not know what they want, much less need. And this creates a situation where other people, or whole systems, try to dictate this to them. Or more exactly, try to dictate how people should live their lives in order to be healthy, and therefore happy.

Health and happiness, though, are qualitative terms that are not easily measured by what may be deemed as wellness in many respects. If a person feels fine, that perception is unlikely to change unless something changes rather dramatically in qualitative measures: it hurts, or it keeps me from being able to do something.

And even then, it seems to me that the change has to be rather sudden. Loss of ability over time allows for adaptation. And in general, this is good.

But in comes the healthcare system, with its idea that it has to fix things.

Or so I hear. There is a rather amazing power dynamic between many a sick patient and a doctor. The one that is perhaps skeptical about all the prescription bottles sitting on his kitchen counter (how much they cost, and how they are making him feel) and the doctor who sees a treatment as the thing that will significantly improve that patient’s quality of life.

So, I spend a lot of time working on issues around quality of life–housing, for example. Or transportation–not just to medical appointments, but to go out to the store, or to the hairdresser (amazing how often this concern comes up). And I also spend a lot of time telling people what their rights are, what choices they have whether in the hospital or in trying to make home modifications. And the person who will use the resources is always the person who drives the bus, in my book.

The case managers I saw last week all were happy about this, and agreed.

So, I am always eager to hear about the professionals I work beside, too. What is frustrating to them? What would make their jobs easier?

I asked the case managers what their biggest challenge was.

Their answer?

Compliance.

It was universal, and it stunned me. I was thinking about that as I visited people in the next week, people in varied and often drastic situations. I was thinking about concerns around hospital readmissions and chronic conditions that often lead to more disease, or worse. And I was thinking about this whole idea of compliance, and what it really means.

I think it is a matter of control. Some people may know full well that they feel better if they stick to a regime of one sort or another, and still choose not to do it. But there may be a lot of other issues that lead to what appears to be lack of compliance.