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The Non-compliant Patient
Charles Atkins, MD First Published in American Medical News April 9, 2001
I recently listened to myself describe the potential side effects of a medication to a patient. "Well, you could gain weight, might experience hair loss, and there's a chance that your thinking won't feel as crisp." As I hit forty I can just imagine what my response would be to a physician trying to push a drug that would make me fat, bald and stupid. Yet if I were to be recommended such a pill--in this case for manic-depression--and then neglect to take it I would become a…Noncompliant Patient. In my current position, where I oversee systems of care, I review thousands of medical records for individuals with severe and prolonged mental illness. Repeatedly, I come up against this term--noncompliance. The more I see it, the less I like it. So starting with Stedman’s to ascertain whether or not this is even a word. I find compliance, "The consistency and accuracy with which a patient follows the regimen prescribed by a physician or other health professional. Adherence." Still, I don't care for the sound of it-- as if not following the doctor's advice is a sign of moral turpitude. The term masks bigger issues; why is this person not doing what the doctor said? It's not because they're naughty. Hidden below the surface of non-compliance are things of real meaning such as, the person can't afford the medication, or can't tolerate the side effects, or can't deal with the illness for which the medication is prescribed—denial is a dandy response to all sorts of bad news. If I don't take the pill or the injection then maybe I don't really have hypertension, diabetes or schizophrenia. For those clients on sedating medications noncompliance might be the manifestation of iatrogenic memory loss. It's not that they don't want to take the pills, they just forgot. Or, if not a side effect of medication, non-compliance has led me to more than one diagnosis of dementia. But again, if we can't see beyond the term, we don't assess for the possibility of short-term memory loss impacting the ability to take a medication as prescribed. Then I think about my own history with medication. Every couple years or so I'll get a cold which will progress to my hacking up something green and nasty. Armed with a plastic cup of sputum I'll knock on my PCP's door. He'll look in the cup and prescribe me ten day’s worth of an antibiotic, while sending the specimen for culture and sensitivity. Within a day or two I'll feel much better and will no longer be expectorating phlegmy gobs of goo. Somewhere around day four I'll miss my first dose; I'll remember later and will either double up the next dose or do without. Yes, I can hear the collective tsking sound; it's bad; it's naughty; it's not how we were taught. Still, by day seven all traces of the green goo are gone, and the remaining three-day's worth of antibiotics find their way to the bathroom drawer where they'll keep company with vintage pill from years gone by. It's true; I confess; I am a non-compliant patient. As a resident, I became friends with an older man whose adult child was in treatment at the local mental health center. One day he pulled me aside and showed me three shoeboxes stacked next to his refrigerator filled with pill bottles; they were mostly full and the prescribers were a Who’s Who of my training program. He asked me what the pills were for. As I went through bottle after bottle of Trilafon, Mellaril, Trilafon, Klonopin, Cogentin, Cogentin, Navane, Lithium…. I asked him why his daughter wasn’t taking her medication. "She doesn’t like them," he told me. "She takes some for a little bit and then she stops." "Do her doctors know that she isn’t taking them?" "I don’t think so. Because they keep prescribing them." "Why don’t you tell them?" "She gets mad if I call." "Do the pills help?" "When she’s in the hospital they help. But when she comes out, she gets them all mixed up and then she just stops taking them." I've developed an admiration for people who are actually able to keep on top of multiple medications taken multiple times a day; it’s not easy. Years back, when I worked in geriatrics, I took part in a performance improvement project that looked at medication accuracy. It was a simple study where older patients wrote down their medications, the dosage, and frequency and why they were taking them. We even allowed people to cheat i.e. they could use anything they had on them to help complete the list. The results were sobering. Across the board there was a 25-75 percent error rate, some of them quite serious. In response, we launched a campaign that involved various strategies to help improve accuracy, things as basic as setting up weekly pill boxes, medication alarms, wallet-sized cards that got updated every time the patient saw a doctor, and bringing in additional supports such as family members and visiting nurses. Over time I've developed what some might consider a jaundiced view of medication accuracy. There are so many variables that figure into whether or not someone will take a pill; I never assume they do. Instead, I ask them if they've been taking the medication and also how they've been taking it; I try to be as open as possible to any response. At least this way I'm operating with more reality-based data. If my client is hallucinating I'm not about to increase the medication if I learn they've only been taking half the prescribed dose. "How come you're not taking the whole pill?" I'll ask. And then depending on the answer: "I thought I was taking the right amount." "I only had to take half when it was green." "I can’t get it up when I take the whole thing." "It’s giving me a rash." "I can’t sleep." "I can’t get up." "You told me not to mix pills and alcohol." "I was trying to make them last because I'm on a Medicaid spend down." "The whole pill makes my hands shake." I'll be better clued in to the next step in treatment. But noncompliance scrawled across a treatment plan, presenting problem or progress note tells me little. I guess all it really says when I see it in a chart is that the patient isn't doing what the treater said, and no one is willing to spend the time to find out why.
My struggle with noncompliance is an active issue for me. After I’d published an earlier draft of this essay, I received dozens of emails cluing me in to an ever-expanding list of why people don’t/can’t or won’t follow doctor’s orders; they all made sense, and many of them spoke to a lack of communication between patients and their physicians. I also noticed how omnipresent this word had become, not just in client charts but peppered through the professional literature, as though noncompliance has some unified meaning that we all understand. I’ve started to play a game with this as I go through charts and work with clients and clinicians. It’s easy to play; whenever you find yourself reaching for the word noncompliance, ask yourself, what is it you really mean to say? What I find is that this leads to greater specificity. It also helps lay the groundwork for understanding and change around important clinical issues where the patient and the doctor have become stalled and disconnected.
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