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The Art of Compliance

by Kerri Sparling

Twitter summary: Kerri tackles the tricky question of compliance – is it offensive, out-dated, or misunderstood? Our readers weigh in.

com·pli·ance (noun) -  the act or process of doing what you have been asked or ordered to do : the act or process of complying

The word “compliance,” by definition, does a great job of putting my actions into specific categories. Am I doing what I was told, or not?  Am I counting my carbs to the gram and calculating my insulin doses accordingly? Or am I relying too heavily on estimations? It’s a word that comes with a simple definition, but with many connotations, especially in the world of diabetes care. “Compliance,” for so many, can be a word loaded with shame, finger-pointing, and judgment.

If my doctor calls me out for a lack of compliance, I feel terrible for disappointing her and not meeting her expectations.  But mostly I feel discouraged with myself for my inability to follow directions. What makes it so hard to do what’s necessary – the multiple glucose checks per day, the healthiest diet, the regular exercise?  And why does this one word seem to make or break a mindset for so many?

Over the last almost-three decades, I’ve had some very compliant pockets of time with my diabetes duties (e.g.. pregnancy, where I followed every rule to the absolute best of my ability). I’ve also been decidedly non-compliant/apathetic at other times (e.g. during my parent’s divorce, where I barely tended to my diabetes needs at all). During the tougher times, words like “compliant” weren’t said out loud during my endocrinologist appointments. When my labwork and logbooks showed lots of out-of-range results, my endo didn’t stamp my file with a big NON-COMPLIANT mark that was visible to me, even though there were several visits where the “uncontrolled” box was marked, or the notes recounted issues I was experiencing. 

It wasn’t until I entered the diabetes advocacy space and started reading a lot of anecdotes from other patients and healthcare professionals that the word kept jumping out at me. “Compliance,” or the lack of it, was to blame for everything diabetes-related that plagued us: a non-compliant pancreas giving rise to a list of diabetes maintenance requirements, and non-compliant patients who didn’t do all the things that we had been asked to do.

I posted an open question on my Facebook page, asking “As people with diabetes, how does the word ‘compliance’ strike you? (Positively? Negatively? Apathetically?)”  Of the 133 responses, most associated the word with a mixed bag of negative emotions, ranging from “offensive” to “underhandedly judgmental” to “it has no meaning [to me].” Briley Boisvert, diagnosed with type 1 diabetes at age two, offered, “I think it's a results-based word for PWDs [people with diabetes] rather than an effort-based word.”

Jessica Collins, living with type 1 diabetes since she was ten, said, “I cringe when I hear the word ‘compliance’ used with diabetes. For me, it is a completely negative word. [It] elicits a knee-jerk, angry reaction. I don't completely understand why, but part of it is the judgment. If you call someone ‘non-compliant,’ then you are judging that person, intentionally or otherwise. Support and encouragement are much more constructive.” “‘Noncompliant’ makes me think of toddlers refusing to eat their vegetables. At best the term is demoralizing and infantilizing, and at worst it implies deliberate sabotage of your self-care. I loathe, loathe, loathe the word,” said Karen Hoffman Anderson, living with T1D.  

Caroline Sheehan, a fellow T1 PWD, agreed, but offered a solution, saying, “’Compliant’ feels like I am following commands by a medical professional, as though I am in lockstep in a one-way relationship. "Adherent" feels like following their suggestions, a two-way relationship in which I stick to or stray from recommendations, not rules. Working in the medical field, I try to say ‘adherent/non-adherent’ as much as possible, and I notice more professionals saying it too. However, ‘compliance’ in the medical world is very common across several domains, not just diabetes. More education and listening to patients' feedback are needed.”

"Compliance means following the prescribed order, to the letter,” said Scott Estrin, diagnosed with type 1 in 1981. “Diabetes is about figuring out what the prescribed order is, given the present situation. It may have been an appropriate in "the olden days of diabetes" when we followed a strict regimen and had crude and limited ways to see how we're doing. Nowadays, when there is so much variability and detail to consider, not just in our choices and our behavior, but in how we measure our current physical and behavioral activity, there is no way to even create a set of rules of which to comply. The term, more than having a positive or negative connotation, is simply outdated.”

Christopher Angell, diagnosed with type 1 diabetes at the age of 30, hit upon the gap between medical advice and disease-in-context:  “What I think it illustrates more than anything is the gap between conventional medical care – doctor gives patient instructions/prescriptions, expects predictable results based on those orders - and what's required for diabetes, like mental health care, peer-support, ability to try different devices/treatment regimens, acknowledgement of the inherent fluctuation of results, etc. I feel like the negative reactions to the word ‘compliance’ or, more accurately ‘non-compliance’ are really reactions to the horribly misguided idea that a doctor, or anyone else, can have specific expectations for an outcome based SOLELY on their medical advice/prescriptions.”

For one parent, the word “compliance” helped her maximize her child’s rights at school. “I find this word [to be] an ally since I need the school staff to be in compliance of taking care of my child with diabetes,” said Diane Cervati, the mother of a young son with type 1. “A checks and balance system implemented to ensure he's safe when in the care of others. The purpose for these orders is to make sure that the school and the nurse maintain standards to keep him safe and allow him to maximize his time at school to be a student rather than a patient. It holds the school accountable, as the consequences for them not following his plan to the letter could result in my son suffering harm. And there are legal ramifications for non-compliance as well.”

Tricia Moore, a RN with type 1 diabetes, offered her take. “I think if, as healthcare professionals, we were able to get to know our patients better, spend more time with them, and see what's really going on, the rate of the labeling of ‘non-compliance’ would significantly drop because we would see that the majority of patients are not simply giving up and are not truly ‘non-compliant’ but have other barriers to their successes. We can then also help find different ways to solve the issues that are present and make the end goals more attainable through education, clarification, financial assistance, etc.”

Is the word “compliance” frightfully out-dated? Or misunderstood? As with everything related to diabetes, your mileage may vary, and the concept of “compliance” is no exception. For me, it can feel like the end-all, be-all assessment of my diabetes, like an A1c result. But even if the word itself stirs up some negative feelings, it does serve to remind me that the to-do list of diabetes is never fully checked-off, and while there are plenty of reasons to feel good about my efforts, there is always something I can do to improve. The quest towards “better” remains constant, and I have to remind myself that a label doesn’t matter as much as my actions, and their outcomes.

“People are resistant to change, and the art is finding what it will take for somebody to do what we are ‘supposed’ to do,” said Scott Scolnick, a fellow person with type 1 diabetes said.  “Compliance is a journey.”

Kerri Morrone Sparling has been living with type 1 diabetes for over 25 years. She writes a much-trafficked diabetes blog, Six Until Me (SUM), and is an active member of the diabetes community. She is known for her tagline, “Diabetes doesn’t define me, but it helps explain me.” Dexcom is currently a sponsor of SUM, and through that relationship, the company provides her Dexcom sensors free of charge. For Kerri’s full disclosure, please visit http://sixuntilme.com/about/2010/03/disclosure.html.

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