The Stamp of Compliance

If you're a type one, you've likely accumulated a litany of diagnoses over your lifetime. Hashimotos, celiac, lupus, the works. They pile on, accruing in your chart over the years. Maybe this bothers you, maybe it doesn't. There's constant debate about the power of labels and how one's diagnostic label can help or hurt them if they over-identify with it. But the more time I spend in the medical field, the more I notice a label that doesn't seem to yield any benefit: compliant. Or, for our purposes, non-compliant.

Over time, doctors need to monitor your diagnoses and how you are managing your health. But seeing non-compliant or history of non-compliance tacked onto a patient chart tends to create an image in a provider's mind before they even meet their patient. There is a level of judgement that inevitably occurs once your diagnostic labels include compliance issues. Much like words that we no longer use due to the negative connotation and derogatory nature they became so closely linked with, compliance is beginning to get a bit of a bad rep. Why? To start, let's look at the definition:

source: www.dictionary.com

Obeying. Yielding. Not exactly words I would appreciate being used towards me as a patient. "You must obey your diabetes regimen." I'm trying to live my best life, not surrender at battle in Winterfell. I've heard certain healthcare providers talk about a shift toward using the word adherence, which I personally think is better. The bottom line is, the word compliance has developed a stigma. To have such a strong label as a diagnostic tool on a patient's chart is a risky move. It becomes easy to say, "This patient is non-compliant. I better not get my hopes up. They're probably not doing what they're supposed to."

This label extends beyond diabetes - it applies to all chronic illnesses, whether it's ESRD, epilepsy, or asthma. It can be so easy to say, "Well, this patient's non-compliant. They don't want to care for themselves," when this may not be the case. There is another approach. When assessing patients and families I prefer to ask, "Are you able to take your medications/follow your diet/etc. as prescribed?" Asking from a place of non-judgement and not-knowing allows space for the patient to ask for help if they need it. Maybe they aren't taking their medication because their insurance doesn't cover it. Maybe they're struggling with an underlying anxiety or depression, or could just benefit from some educational counseling. Simply labeling someone as non-compliant and leaving it at that eliminates any possibility for improvement. And people living with chronic illness deserve a chance for improvement. Being stuck in a place where they are struggling to care for themselves doesn't have to be a place where they remain.

So what now? Other than adherence, what words would you prefer to have used, as a patient or as a provider? I am curious to know.