Our treatment of patients with chronic health conditions often looks more like a wrestling match than a collaboration. But what are we supposed to do with cardiac and renal patients who don't follow their fluid restrictions. Hypertensive folks who won't lay off the salt. The obese whose greatest exercise is a hike to the refrigerator. And patients who "forget" to take their meds, cancel appointments, or refuse to follow our instructions. These are the ones who make us want to throw up our hands in frustration.
Of all chronic patients, type 2 diabetics are arguably the most challenging. Because their disease is systemic and sneaky, their indiscretions often don't result in immediate signs or symptoms. But the long-term nature of their condition makes them a good population to study.
What comes to mind when you think about type 2 diabetic patients? Obesity? Neuropathy? Foot ulcers? Heart attack? Add the possibility of kidney problems, blindness, and amputation, and you have a hospital shipload of challenges.
Some of your patients--the highly-motivated and extremely capable--will prove to be the teacher's pets of the medical world. Those in the hump of the bell curve will skip, amble, plod and sometimes stumble, but they'll still make steady progress toward better health. Then there are the ones you'd like to suspend or at least send to medical detention, if only such a thing existed. Hollering expletives at patients is considered unprofessional, so you'll have to settle for writing a dirty word in their charts.
These are the folks we label as--"noncompliant."
To a healthcare professional, this might seem like an innocuous term describing a patient who is doing bad things or isn't doing good things. No big deal. Right? Let me tell you what "noncompliant" and "noncompliance" can mean to someone battling type 2 diabetes.
Noncompliance implies its opposite--"compliance," and that tells you is that there's an agenda at work. That's not such a terrible thing on the surface, but whose agenda is it? The doctor's? The nurse's? The parents' or the significant other's? Who's missing from that list? Ah yes, that would be the patient.
It might seem obvious that if Joe Donuteater is diagnosed as a type 2 diabetic, certain things will automatically fall into place. We'll outfit him with a glucometer, tell him he has to start exercising, write out a handful of prescriptions, and send him off to the dietician so she can explain food exchanges and journaling to him.
What could possibly be wrong with any of that?
What's wrong is that it's a nearly universal practice to kick-start this rescuing behavior before the diagnosis has had a chance to sink in and without once asking the patient what his goals are and what he is willing to do to achieve them. We answer questions the patient hasn't yet asked or even had a chance to think of. And we assume that because our goals are the only ones that make sense to us, they are the only choices, period.
In making that assumption, we pick up one end of a tug-of-war rope and hand the other to the newly diagnosed diabetic. And when he pulls against us--a fairly reflexive reaction once we start yanking--we call his behavior noncompliant. Then we tug all the harder-- educating, lecturing, pleading, scolding, shaming, and using all manner of scare tactics to whip this sorry guy into shape. (I want you to get your numbers under better control so you can preserve your kidney function. We're concerned because the results of your lipid panel show that you're a prime candidate for a heart attack. You don't want to lose your feet, do you?) Does "our" worrying work? With many of these troublesome patients it does--for a little while. But then they fall off the wagon (there must be a lot of potholes in front of pizza joints and Chinese buffets) and don't come back to the office for months or even years.
Which begs the question--if the methods we've been using on this difficult group are really so effective, why are there still so many "noncompliant" patients?
The second thing that the term "noncompliant" suggests is that the patient answers to the professionals. That might have cut it during medicine's paternalistic "golden days," but in the age of informed consumers, such a backward approach won't fly. Offended patients might not jump ship, but they also might not get better.
Using "compliance" to describe a patient's cooperation with an itinerary he didn't agree to is like patting him on the back because he followed us into the cab we said would begin his trip to boot camp. To often we later have to reverse ourselves and protest (loudly) that he didn't comply at all, dadgum it, because he gave us the slip at the airport and hopped a plane to Hawaii! Not unlike the patient who walks out the office door promising to get with the program (our program), only to return months later with his HA1c a full point higher.
Finally, the concept of compliance often contains elements of coercion and capitulation that can strike tiny sparks of resentment. Who doesn't feel like smoldering a little when they fear being lectured or spoken to like a naughty child if they don't knuckle under? And when those sparks ignite, that resentment can lead to rebellion, rebellion to failure, and failure to giving up entirely. That's serious enough when a job or a relationship is on the line, but when such a power struggle has the potential to undermine a person's health and possibly cut short his life, the outcome can be tragic.
But that's not our fault, is it? The disease took the patient's choices away. Not us.
That's the mindset we've been using. How well do you think it's working?
