Quite frequently I will come across the word “non-compliant” in the medical record of a patient, one that I am going to admit to the rehabilitation hospital after they have had a stroke or brain injury. The word shows up in the emergency department physician’s introduction to the patient’s story, the “history of the present illness,” also known in the medical world as the HPI. In the case of a patient who has had a stroke, the HPI may read something like this: “A 66-year-old male with a history of hypertension, hyperlipidemia, tobacco use and diabetes, non-compliant with medications, presented to the emergency department with complaints of left sided weakness and slurred speech.” The silent message between the words is clear: this patient did not do what they were supposed to (take medications to ameliorate their stroke risk factors) which therefore caused their stroke. They are to blame.
The picture that automatically comes to mind is of a male who looks older than his age, cigarette hanging out of his mouth, overweight, and well…unhealthy. And the use of the word “non-compliant,” the definition of which is not complying to a rule, wish, or command, implies the patient is rebelling against medical advice. Not only that, but it also sets up an inherent tension in delivery of care for the patient; physicians are expected to take care of whoever shows up in their exam room, no matter what decisions the patient makes, or what the patient believes about medications or the recommended treatment plan. It’s harder to deliver care to a patient that is “non-compliant” with stroke preventative strategies, such as smoking cessation, blood pressure control, and blood sugar regulation. It’s easier to have compassion for the patient who does all the right things and yet still has a stroke due to bad luck.
I would argue that the word non-compliant is not helpful and should not be used in the medical record. It is heavy with assumption and blame. Reporting that a patient is not taking any medications is factual. However, there can be many reasons why a patient isn’t taking any medications other than purposefully choosing not to. Maybe they can’t afford the medications; not a far stretch to imagine given the sometimes-exorbitant costs of pharmaceuticals and health insurances that may or may not cover the medication depending upon the company’s “formulary” list. Maybe they can afford the medications but have impaired memory and familial support systems, so they don’t take them correctly. Maybe they are visually impaired and can’t see what’s written on the prescription bottles. Maybe they have arthritis and can’t even open the tamper proof tops.
It’s also possible the patient just doesn’t believe the medications will help. Is this a crime? Something to shame the patient for? We often have patients in the hospital that have a bracelet stating, “no blood products.” These are usually patients who are Jehovah Witnesses, believing that it is against God’s will to receive blood, and to do so risks their excommunication from their religious community. They would rather die than receive a transfusion. Should we call these patients “non-compliant?”
I’m thinking of a patient I took care of years ago, who came to the rehabilitation hospital after a stroke. His HPI read just as it did above, setting the scene for a patient that likely contributed to his own cerebrovascular injury. When I walked into the room to meet him, I was astonished to see a very fit older male who looked about a decade younger than his biological age. He was strong and muscular, and it was obvious he very much cared about his own well-being. He was recovering from a ceremony that he had participated in, one that was in line with his cultural and spiritual beliefs. He believed that his stroke had happened because of a wound that was taking longer than usual to heal, a wound created during this sacred ceremony. He told me that I did not understand his world, that it was different from mine, and that he thought he could stay healthy using his own herbs, prayers, and medicines. I agreed with him that I did not understand, and sat down to ask him about his world, whatever he wanted to share.
We developed a great relationship during his rehabilitation stay and he had an excellent recovery from his stroke. I told him it was his choice whether he wanted to take the western medicine that would treat the risk factors he had for having another stroke: his high blood pressure, high cholesterol, and high blood sugars. It was his choice, and I would not blame him if he continued to live his life according to his own beliefs. I would not call him “non-compliant.”
He was willing to take the medications I recommended when he discharged. He told me that it was time for him to be a part of “both worlds,” and agreed to check his sugars daily as well as his blood pressures. I don’t know why he made this decision. Maybe it was because he saw other patients on the rehabilitation unit and in the therapy gym that had obviously suffered from more severe strokes. Maybe it was because I didn’t pressure him to take care of himself in the Western Medicine way. Or maybe it’s as simple as the fact that I was open, that on that first day I sat down next to him on his bed and asked him to tell me about his world and his beliefs. I’m hoping that I never have to see him again as a patient in the rehabilitation hospital and that his choices allow him to live a long and healthy life.