Back in 1993, I published an article titled “Is Noncompliance a Dirty Word?” in which I expressed sadness that people with diabetes were being blamed by their healthcare providers for not following treatment advice (1). I suggested that the patient’s “failure” might really be a failure of the partnership (or lack thereof) between patient and provider. Fifteen long years ago, I challenged diabetes educators to work with medical practitioners to change noncompliance from a dirty word to a rare occurrence. So, how are we doing today?
From noncompliance to self care
Well, the diabetes lingo has evolved from “noncompliance” to “nonadherence,” and then to “the inability to perform self-care,” but they all describe a patient with diabetes who is not following the prescribed regimen. No matter what we call it, the outcome is the same. Patients are not doing what we tell them to do.
The result can be the onset and progression of the complications of diabetes that we all know and dread, but the consequences all belong to the patient, not to us. My question to my fellow diabetes educators is: Whose regimen is it anyway? Are we taking the time to ask patients how they choose to manage their diabetes? What are their goals? Have we presented both the benefits and the costs (in time, money, and energy) of the treatment we are recommending? Does the patient know how to follow the 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 as she told me that her husband, Frank, was not taking care of his type 2 diabetes and related her fears that he would develop serious complications, or worse. Both she and his primary care physician labeled Frank as noncompliant and blamed him for his poor glycemic control and A1c of 8.8%.
On his first visit, I asked Frank to bring in all 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 he 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) because he had received instructions from an office “nurse” who very likely was not a nurse at all. He had stopped monitoring his blood glucose because the numbers never improved, despite intensifying therapy.
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 was in his early forties, had young children, and worked at a blue-collar job that required physical labor. He needed to be healthy to support his family.
Over time, I worked closely with Frank to develop a partnership with him, and 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, and he is filled with pride that his hard work is finally paying off.
Why am I telling you all this? For this reason: We are all taking care of many “Franks” who are getting substandard treatment because they’ve been labeled noncompliant. How can we turn this around? I have made it my personal mission to react whenever the term noncompliant or nonadherent is used to describe a patient referred to me. I take the time to explain that a breakdown in the partnership between patient and provider has led to the 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 I try to help them do better, one intervention at a time. I hope that you will take the time to do the same.
1) Seley, JJ (1993). Is Noncompliance a Dirty Word? The Diabetes Educator; 19; 386-391