I Struggle with Diabetes. Don’t Call Me ‘Non-Compliant’

When Ally Hughes arrived for a routine eye exam, she had no idea the optometrist…

I Struggle with Diabetes. Don’t Call Me ‘Non-Compliant’

When Ally Hughes arrived for a routine eye exam, she had no idea the optometrist would also be judging her entire diabetes management effort.

“I was just getting an update for my glasses, and the tech was asking for health information,” recalls Hughes, a PhD health researcher and advocate in Boston who’s lived with type 1 diabetes (T1D) for 24 years since age 7. Over the years, she had no history or evidence of diabetic eye disease.

“After the exam, the tech sat down and immediately wrote ‘type 1 non-compliant’ on my chart, right in front of me, for billing coding.”

Hughes was especially alarmed and offended because this healthcare professional didn’t have access to her A1C lab test history or any blood sugar data, at all.

“She met me at face value and labeled me as ‘non-compliant,’” adds a frustrated Hughes. “I asked her why she was writing that, and she couldn’t even give me a reason. She got mad at me for asking. But someone trained her, taught her to use that language.”

In the health records of any person with diabetes (type 1 or type 2), you will find notes and insurance billing codes that aim to describe them: compliant vs. non-compliant, adherent vs. non-adherent, and/or controlled vs. uncontrolled.

The terms “non-compliant” and “non-adherent” are used in conjunction with overall diabetes management, dietary habits, exercise habits, and medication use. But “non-compliant” implies intentional neglect of one’s self-care, whereas “non-adherent” is supposed to be used to describe unintentional neglect.

The determination of “controlled” vs. “uncontrolled” is based entirely on blood sugar levels and A1C results. For many forward-thinking healthcare providers, this terminology has actually been deemed taboo in recent years, but it still persists in formal codes and in many healthcare practices.

None of these labels, however, serve the primary purpose of the visit: to determine what type of support, help, and education the person with diabetes (PWD) needs in order to improve their health and thrive with this condition.

Instead, these terms inevitably cast shame and blame on the PWD, and do not acknowledge what’s actually going on: that this person needs more support and is clearly struggling with something that is directly or indirectly affecting their diabetes management.

Anyone living with diabetes knows that blood sugar levels are the result of a vast list of factors, as demonstrated in research, and can easily run high even when a PWD is taking their medication as prescribed.

In T1D, a simple change in work schedule or sleep schedule can mean changes in insulin needs — not to mention hormones, stress, oncoming illness or infection, or even sometimes the weather (for real!). If a PWD has never been taught how to insulin dose around their menstrual cycle, for example, it could look like they are neglecting their diabetes for an entire week, when in fact they needed further education from their healthcare team.

In her job, Hughes often works with pharmaceutical companies to gather insight from patients to better serve their diabetes management needs. Over and over, she emphasizes the importance of the language used in every question asked to a patient.

“Language is so important, and research shows that,” explains Hughes. “The same way we try to avoid referring to someone as a ‘patient’ or a ‘diabetic,’ we should be avoiding terms like ‘non-compliant.’”

As a result of the wave of telehealth appointments in the wake of COVD-19, Hughes points out that patients have had more access to their health records, where they can actually read notes from providers.

“I have friends who have changed providers this year because the notes are so judgemental,” Hughes says. “They’re completely missing the human being and the challenges we face!”

Medical billing codes are not all bad. They can cover a variety of specifics, for example, whether or not a person was in diabetic ketoacidosis (DKA) at the time of their diagnosis.

In ongoing care, healthcare professionals also use billing codes to identify if a PWD has specific complications, too. These make sense, as a complication diagnosis would indicate and justify the need for specific treatments and types of care.

But the same cannot be said for terms like “non-compliant.”

“It’s a horrible term, horrible,” says Dr. Bill Polonsky, founder and president of the Behavioral Diabetes Institute and author of the seminal book, Diabetes Burnout.

“These terms are inaccurate, demeaning, and insulting, and perhaps even more importantly, it doesn’t actually help you get anywhere,” Polonsky added. “There have been some efforts to change the language around diabetes care, but the problem with these terms — and I can’t emphasize this enough — is that even if you don’t mind it, it’s almost always inaccurate.”

Polonsky points to research that has repeatedly proved that a person’s self-care behaviors do not necessarily correlate directly with their overall health.

“People with diabetes do what anyone else does: very few of us can follow every single healthy habit or change, so we choose the ones we can,” explains Polonsky. “But there’s a type of bias in which we see another person’s behaviors as a problem with their personality, but we see our own behaviors or choices as the result of a situational obstacle, like being too busy to exercise. Situational excuses.”

“I was just reading a study this morning that described an entire patient population as ‘non-compliant’ just because their A1Cs are high. Really? Maybe their doctors suck! Maybe they can’t afford the medications they need,” he tells DiabetesMine.

Polonsky points out that there are a vast number of reasons a person with any type of diabetes may be struggling with high blood sugar levels. For example:

  • Their health insurance won’t cover adequate diabetes education.
  • They can’t get affordable health insurance and are paying out-of-pocket for every visit.
  • They have a severe phobia of needles or swallowing pills but no one asked that when prescribing insulin injections or oral medications.
  • They’re struggling with depression, anxiety, or diabetes burnout.
  • Another major life event (like a death, a divorce, childcare, changes in employment) is significantly affecting their ability to make diabetes management a priority.
  • The side effects of their medications are unbearable and they’ve stopped taking them.
  • They were never educated on the purpose and value of taking that medication.
  • They live in an unsafe home, facing daily abuse.
  • They don’t have the financial resources for the costs of test strips and medications.

The list of possible obstacles goes on and on, he says.

Blame-focused language inevitably has a negative impact on PWDs, and also affects how a healthcare provider might view a new patient.

If “non-compliant” is in a patient’s health record, their new healthcare team sees this and might immediately approach this person with an assumption that this patient isn’t trying and isn’t worth much effort or time, Polonsky explains.

“Even if the patient is directly responsible for those high blood sugar levels, blaming someone isn’t helpful. I want everyone in healthcare to realize and recognize that consistently high blood sugar levels indicate that they are struggling. Something is in the way. They don’t need shame and blame, they need help.”

By viewing that “non-compliant” patient, instead, as someone grappling with an obstacle, rather than a lazy person, Polonsky suggests it would change the entire conversation during every appointment. It has the potential to help the PWD feel far more supported, as part of a team instead of as the “bad diabetic” who is failing because their blood sugars are high or their diet isn’t perfect.

“You’ve got to get to the specifics of what that person is struggling with,” adds Polonsky. “Unfortunately, most healthcare professionals are too busy, have a waiting room full of patients, and don’t have time.”

This further emphasizes the need for more access to diabetes specialists — both endocrinologists and diabetes educators.

“Language is powerful and can have a strong impact on perceptions as well as behavior,” explains the 2017 study, The Use of Language in Diabetes Care and Education, authored by Jane Dickinson, and published by the American Diabetes Association (ADA).

The study explains, “Language lies at the core of attitude change, social perception, personal identity, intergroup bias, and stereotyping. The use of certain words or phrases can intentionally or unintentionally express bias about personal characteristics (e.g., race, religion, health, or gender).”

According to the study, the biggest problem with terms like “non-compliant” — its impact on the person with diabetes and their motivation and empowerment to improve their health.

“Words have the power to ‘elevate or destroy.’ This is also true of language referring to persons with diabetes, which can express negative and disparaging attitudes and thereby contribute to an already stressful experience of living with this disease. On the other hand, encouraging and collaborative messages can enhance health outcomes,” the study states.

For healthcare professionals, this study emphasizes just how critical every sentence of every conversation with every patient truly is.

“How we talk to and about people with diabetes plays an important role in engagement, conceptualization of diabetes and its management, treatment outcomes, and the psychosocial well-being of the individual. For people with diabetes, language has an impact on motivation, behaviors, and outcomes,” the authors note.

Fortunately, many of today’s diabetes specialists already value the power of language and can hopefully lead the way for both experienced and learning diabetes healthcare professionals.

“I don’t use the term ‘non-compliant,’” says Dr. Camille Powe, an endocrinologist at Mass General in Boston and Harvard Medical School, and co-director of the Diabetes in Pregnancy Program.

“As doctors, we are supposed to help patients improve their health and it’s not useful to blame the patient for their disease,” explains Powe. “Our job as diabetes doctors is to help patients achieve diabetes control in a way that works for the individual patient.”

“Personally when I encounter a patient struggling with diabetes management, I try to meet the patient where they are and explore the barriers to blood sugar control. People are complicated and there are so many reasons why blood sugars may be different than we want,” says Powe.

She tends to use more specific, factual terms to describe the struggles of a patient when making notes in their files.

“For example, ‘barriers to using insulin before meals include a demanding job’ or ‘patient lost access to insulin due to cost’ or ‘patient is struggling with depression that is influencing diabetes self-management’ or ‘patient has severe insulin deficiency that makes diabetes very difficult to control.’”

Powe’s approach to language matches the ADA study’s recommendations, too, suggesting language that is based on facts and avoids casting judgment or blame.

Examples recommended in the study to replace judgemental terms like “non-compliant” in health record notes include:

  • “John takes his medication about half the time.”
  • “Sue takes insulin whenever she can afford it.”
  • “He eats fruits and veggies a few times per week.”
  • “She is checking blood glucose levels a few times per week.”
  • “He is taking sulfonylureas, and they are not bringing his blood glucose levels down enough.”
  • “He has not started taking insulin because he’s concerned about weight gain. He sees insulin as a personal failure.”
  • “Metformin was not adequate to reach her A1C goal.”

The study concludes that all care should strive to use non-judgemental language because it is “an essential starting point for conveying respect” and acknowledging just how challenging the demands of managing any type of diabetes truly are.

“Healthcare professionals have an opportunity to reflect on the language used in diabetes and adapt strengths-based, collaborative, and person-centered messages that encourage people to learn about and take action to manage this complex disease,” the study’s authors conclude. They note that people with diabetes and their doctors should be thought of as a team, tackling diabetes together.

They acknowledge that truly eliminating outdated, blame-focused language and replacing it with more patient-centered and empowering language will take time and persistence. Luckily, providers like Powe are already leading the way.