In 1993, I published an article entitled “Is non-compliance a dirty word?” in The Diabetes Educator in which I expressed my sadness that people with diabetes were actually getting blamed by their health care providers for not following treatment advice (1). I suggested that the patient’s failure might really be a failure in the partnership (or lack thereof) between patient and provider. Fifteen years ago, I challenged diabetes educators to work together with medical practitioners to change noncompliance from a dirty word to a rare occurrence. So how are we doing today?
From non-compliance to self-care
The diabetes lingo has gone from “non-compliance” to “non-adherence” to the inability to perform self-care, all to describe whether or not a patient with diabetes is following their prescribed regimen. No matter what we call it, the outcome is the same. The patient is not doing what we told them to do. The result can be the onset and progression of the complications of diabetes that we all know and dread. The consequences all belong to the patient, not us. My question to my fellow diabetes educators is: Whose regimen is it anyway? Are we taking the time to ask the patient how they choose to manage their diabetes? What are their goals? Have we presented both the benefits and the costs (time, money and energy) of the treatment we are recommending? Does the patient know how to follow their regimen safely and comfortably? Until we do this, the patient is not ready to be independent and perform self-care.
Several years ago I was asked to see a new patient as a favor to a former colleague. She was in tears describing how her husband was not taking care of his type 2 diabetes and she feared he would develop serious complications or worse. Frank’s wife and Frank’s primary care physician had both labeled Frank as “non-compliant” and blamed him for his poor glycemic control with an A1c of 8.8%. On the first visit, I asked Frank to bring in all of his medications so that I could review them with him. I was sad to learn that he was taking sub-therapeutic doses of three oral agents, and had stopped taking exenatide because it “didn’t do a thing.” When I questioned him further, I learned that Frank had been taking the exenatide at the starting (non-therapeutic) dose, at the wrong time (post meals), and in the wrong place (injecting in his forearm). He had received instructions from an office “nurse” who very likely was not a nurse at all. Frank stopped monitoring his blood glucose because the numbers had never improved despite intensifying therapy.
I imagine by now that your heart is racing. So is mine. As you read Frank’s story, you are probably filled with anger at Frank’s physician for not properly managing Frank’s diabetes. To make this story even more heart wrenching, let me add that Frank is in his early forties, has young children, and a blue collar job that requires physical labor. He needs to be healthy to support his family. Over time, I worked closely with Frank to develop a partnership with him through which he learned how to manage his diabetes through lifestyle changes and optimal pharmacological interventions. I am happy to say that Frank keeps in touch to let me know how he is doing. He is filled with pride that his hard work is finally paying off.
So, why am I telling you all this? It’s because we are all taking care of many “Franks”. These patients are getting sub-standard treatment because they’ve been labeled “non-compliant”.
How can we turn this around? I have made it my personal mission to react whenever the term “non-compliant” or “non-adherent” is used to describe a patient referred to me. I take the time to explain that indeed there has been a breakdown in the partnership between patient and provider that has led to this point that the patient is not capable of safely and comfortably performing self-care. I share with the provider the secret to my successes and help them to do better, one intervention at a time. I hope that you will take the time to do the same.
1) Seley, JJ (1993). Is non-compliance a dirty word? The Diabetes Educator; 19; 386-391