“Non-Compliance”

“Non-Compliant” seems, at first glance, to be a fairly straightforward idea—a patient who doesn’t follow the instructions given to them by their clinician. But the more I get into how we use that term and what it means, the more fraught with complications, misconceptions, and at times capitulation it becomes.

At my last clinical, there were several patients who were alcoholics in various stages of liver disease. “Non-compliant,” was the verbal label given to them by every health care worker who dealt with the turnover of their care. While care continued for these patients at the same standard as for every other patient in the unit, those words turned the burden of blame for their deteriorating health squarely onto them. Going through a chart, I noticed that one of these “non-compliant” patients was listed as being homeless. I had to ask: how possible is it to be “compliant” if you’re living on the street?

Days later these thoughts were echoed at my new placement in the Community Outreach Program at a domestic violence shelter. “The women who come here always have a long list of health care failures that have been branded as non-compliance,” one of the nurses at the shelter told us. “But unless you know someone’s situation inside and out, you just can’t label them as ‘non-compliant.’ There are so many obstacles at work preventing them from following through on their care.”

The reasons why people don’t follow the instructions their clinicians provide are endless: they couldn’t afford the medication, or couldn’t understand the directions. They didn’t have an access to transportation to get to a clinic. Maybe their abusive partner hid their insulin again. Oftentimes the barriers are less straightforward, though no less potent, with substance abuse and mental health serving as obstacles to following health care instructions.

When you’re an RN struggling to keep up with all of your patients, and the difficult alcoholic patient is taking up time that you wished you could have spent in supplementary care with the sweet renal patient two rooms down, it can be hard to remember that alcoholism is one of that patient’s health problems, and not simply a behavior. But it’s a reality that you can’t lose sight of without losing all of the ideals of equal healthcare. Labeling someone as “non-compliant” because they haven’t followed your instructions is easy, but it doesn’t address the problem—especially if the problem is the feasibility of your instructions, or the resources available for that patient to follow through on them.

Of course, it’s all much more complicated than that, and I’m only just starting to sift through the nuances of what happens around what we call “non-compliance.” In a great many cases, the individuals would have followed medical advice if the many overlooked barriers I’ve just talked about weren’t there. But in other cases, people just didn’t want to comply with their clinician’s instructions, for excellent, relevant, individual reasons steered by their own wishes and beliefs.

A few days ago, I wrote about respecting people’s rights to go against medical advice. But as my friend Madeleine said, understanding the reasons behind an individuals “non-adherence” or “non-compliance” is the greater struggle. “Not just being able to accept someone’s decision to refuse care, but also developing the relationships with patients that allow you to grasp, if not agree with, their decision-making process,” she said. “And even more challenging, to reach for that understanding while resisting the condescending belief that, ‘if only I could figure out what was really going on here, I could convince them to get the treatment they need.’ Realizing that the patient is not the means to your ends (their health), and that it is, in fact, about them, should be defining the parameters of the process from start to finish.”