I know, not the first time I’ve talked about the importance of thinking about the words we use but hey, what can I say, I firmly believe in word dynamics: word® mind ®manifestation. So the the two words I want to pick on today are Adherence and Compliance.
In the diabetes community, adherence and compliance are words that are used to talk about and evaluate how PWD are doing with their diabetes management. These words are often combined with: good, poor, non, won’t, bad. As well as: he is, she isn’t, they are, he has. See where I’m going with this – He is non-compliant, She has poor adherence, They have good adherence…..
Before we go into the impact of these words, let’s start by looking at what our friends at Merriam-Webster Dictionary say about the words of the day.
the act of adhering; especially: the act of doing what is required by a rule, belief, etc.
the act or process of doing what you have been asked or ordered to do: the act or process of complying
My two big beefs with using these words to describe a person and his/her diabetes management are that they are accusatory and detract from finding more effective ways to support and improve health outcomes.
Diabetes is a chronic condition that comes with a great deal of blame, shame, guilt and misunderstanding about what it is and how it “should be” treated. When healthcare professionals use these terms (adherence/compliance) it perpetuates the belief that the person with diabetes is to blame if they aren’t able to maintain a target A1c.
Let’s face it, saying a person is non-compliant or has poor adherence likely takes that person right back to the feeling in grade school when you got in trouble for not raising your hand or lining up on the wall when told. The clear message is you’re a behavior problem and not following the rules. Coincidence that A and c (adherence / compliance) is in the name of our diabetes report card- A1c?
My second beef with the words of the day is that their meaning points healthcare professionals in a certain direction for answers to the question “how to improve health outcomes for PWDs?” If the issue is that they (PWDs) won’t follow directions or do what they’re suppose to do, then the answer is about finding a way to make them do it (adhere/comply).
From this path of thinking come programs focused on Medication Adherence (reminders/incentives to take medication), Disease Management (monitoring and frequent touches to make sure you know someone is watching to see if you are doing what you’re suppose to), Disease Awareness (learning what happens to you if you don’t follow the rules).
I recognize that all of these programs are beneficial in some ways and offer necessary resources. But these programs are ultimately designed with the goal of helping people do what they are suppose to do, so to the person with diabetes they often feel like policing efforts based on control and scare tactics. Additionally, studies show that these programs have a very low rate of effectiveness in improving health outcomes.
Switch now to looking at the situation from the broader context of treatment barriers. Re-frame the challenge of maintaining healthy BG control to – the need to identify what’s getting in the way (barriers) of healthy BG control – and people start to look beyond the person with diabetes as the source of the problem.
Adherence / Compliance Treatment Barriers
Won’t Take Medication(s) Can’t afford, extreme side effects, mobility/vision limitations
Won’t Eat Right Low nutrition education, limited access to quality food (cost and availability), cultural gap with FDA food pyramid
Doesn’t Follow DM Plan Psychosocial factors: depression, denial, anxiety, under insured, lack of proper supports, work constraints, language barrier…
As you can imagine, the types of programs and resources that are built to address the points in the Treatment Barrier column are very different than the programs based on points from the Adherence Compliance column. Beyond program content differences, asking questions and building care plans that align with treatment barriers has the ability to make the person feel supported rather than blamed and policed.
The great news is that psychosocial issues are gaining attention and focus in programs for PWD- this is exciting from both clinical and human perspectives. By updating our word choices related to diabetes management we have the power to support that trend and chip away at the diabetes culture of blame.
As PWD we can help move the conversation towards treatment barriers by being open and forthcoming about the real life things that might be getting in the way being able to follow a specific diabetes care plan.
Diabetes management shouldn’t be seen as one size fits all. If an aspect of your diabetes management routine is making it difficult for you to follow, ask your healthcare provider to recommend other options. Adjustments or alternatives are available for certain medications and how they are taken or delivered, meal plans and exercise/activities can also be greatly varied to better accommodate your lifestyle. Your health care provider should also be able to connect you with resources for community and emotional support, financial aid, behavioral health and general health education and wellness.
With both health care providers and PWDs working to bring attention to treatment barriers the conversation can continue to shift away from adherence and compliance and towards to increasing the programs and resources that address treatment barriers.