You never know what environment you are going to walk into at the start of a busy clinic day. Patients visit their doctors with a multitude of expectations and fears surrounding their medical treatment and care. As medical providers, we must apply our carefully practiced art of medicine to deftly sort through these delicate notions. It’s why we are taught, time and time again, to work our hardest to leave our biases at the door before knocking to enter a patient room.
I had spent part of the prior evening preparing for the patients scheduled for our primary care clinic that day. Since completing my chart reviews, I had one main concern that wouldn’t leave my mind. One of the afternoon patients had multiple discrepancies in his chart. Specifically, there were several pharmacy communications detailing refill rejections for blood pressure and diabetes medications from six months ago, with the only recent update being the successful refill of a lipid-lowering medication. But that was months ago, and surely the patient had not gone so long without his medications, right? Still, my worry wouldn’t budge.
As the busy morning passed, naturally, my worries were sidelined, as I had new patients with new concerns to focus on. When I had a free moment, I began to more thoroughly read through the chart of the patient who had stuck out to me the previous evening. The most recent note was riddled with a latent sense of disdain for the patient: I advised patient to lose weight. Patient did not lose weight.
Finally, I noted “noncompliance” buried within his problem list.
When I entered the patient’s exam room, I was greeted with a sheepish, “Hello doctor,” by a well-appearing male who seemed to be in his mid-forties, staring at the floor. I clarified my position as a medical student, but before I could finish, he began to apologize, anxiously rambling about his guilt for not coming to the clinic sooner. His speech was pressured and jittery — he was nervous, with eyes that never once left the floor.
My initial suspicions proved correct. He had not taken any medications for his blood pressure or diabetes since September, a whopping six months ago. But it was not for a lack of trying. There were clear notes in his chart detailing his attempts to refill his medicines. Disregard for his health, embedded in the notion of “non-compliance,” did not seem to be the issue. He was taking his daily cholesterol medication. He was logging his blood pressure at home twice daily and his blood sugar three times daily. For someone not appropriately taking medications to assist with these conditions, I wasn’t quite sure why he was checking so frequently, but he seemed more adherent to monitoring regimens than any patient I’d seen in my rotations thus far.
It all clicked when I decided to ask him to describe his medications and the conditions they were used for. He understood that he was to take tablets daily but had little awareness of their purpose. His knowledge of diabetes was limited to the fact that he had once witnessed a hypoglycemic episode in his mother after she had taken her insulin, but even that story was not clear. He had thought she was dying, but EMS “fixed her diabetes.”
I realized he lacked health literacy and did not understand his medical problems or their respective medications. In my experience, specific deficits in health literacy are typically addressed at the first or second visit when medications are initiated. I felt a unique bias at play here. The patient was a Caucasian male, English-speaking but not formally educated. We often grant those with language barriers time and grace with understanding their medical conditions. This is certainly warranted, as it is a difficult task to learn medical jargon when English is not your first language. However, we often assume that someone who speaks English has received formal schooling and is going to be able to keep up with the prescribed treatment regimen. This is not the true reality of the patient population we care for. Data from the latest U.S. census reveals that nearly 10% of the population have less than a high school diploma equivalent and nearly 30% have no further education beyond high school. This is a resounding number, considering the well-documented relationship between literacy rates and health outcomes, particularly as it relates to chronic disease.
I quickly organized a plan to engage the patient in some teaching. We began with an exercise to hand-write the names of his medications and their indications on a sheet of paper that he could carry in his wallet. I then organized handouts with primarily graphic representations about diabetes and glycemic index and took a seat next to the patient to read and talk through the images. He was more engaged with me at this point than he had been in the entire encounter, holding eye contact with me, asking questions and interjecting comments about adjustments he could make to his diet and lifestyle. We then spoke about his blood pressure and the need to have another meeting to do the same for it. To avoid overwhelming the patient with information, I didn’t cover all that I wished to cover, but by the end of the visit, I felt slightly reassured with his understanding of his health. While one visit will not solve everything, at the very least, I provided some tools to jumpstart his understanding of what has likely been repeatedly explained to him without much effect.
Now, as I reflect on this experience months later, I am led to reflect on the very character of the notes we write about our patients. Truly, the purpose of documentation is to allow us to describe details for ourselves and other providers to be able to continue care for the patient in a clear, organized manner. This allows us to put the patient first and to, over time, find solutions that meet our patients where they are in order to help them improve their health. Oftentimes, it is necessary to delineate a patient’s adherence to the advised regimen, but it is not at all useful without understanding why they are not adherent. This is the central purpose of our shared decision-making model. Ultimately, in situations like this, a label of “noncompliance” can be quite harmful, instigating continued biases that have no place in caring for people.
I often think back to this patient, particularly as I meet many more like him — individuals with limited health literacy who desperately need an opportunity to understand their condition. I wonder if he was able to understand and retain the massive amount of information shared with him during our one office visit together. Unfortunately, with the end of my rotation came the end of my follow-up with him, and I may not know what became of our discussion. Yet, now I understand, this is the role of a doctor. We may not be able to resolve every deficit or to amend every problem, but focusing on compassion and understanding is our best chance at improving the health of our people.
Ultimately, from this experience, I gleaned a new perspective on the “non-compliant” patient. There are a plethora of barriers that we can prepare for, but we can never fully predict why a patient may not follow our exact instructions. This patient clearly lacked any apparent understanding of his medical conditions, with a background that prevented him from understanding the words used by providers and a shortage of confidence to stop providers for clarification. No amount of nutrition or other specialty referrals would have been able to get through without increasing his baseline knowledge. This patient is no different than a patient who speaks a different language, yet we may often find ourselves failing to recognize the need for a translation. But if we are conscious of this bias moving forward, we can touch more people; and this is where we find the true art of medicine. And I am very proud to spend my career learning and practicing it.