New Recommendations on Language for Diabetes Care and Education Published in Consensus Report

ARLINGTON, Va. (October 17, 2017) — Diabetes is a complex disease that requires continuous daily care and relies on effective communication between care providers, educators and people with diabetes to achieve the best health outcomes. The language that healthcare professionals and others involved in diabetes treatment use to discuss the disease may impact both self-perception and treatment outcomes for people living with diabetes. A panel of experts from the American Diabetes Association (Association) and the American Association of Diabetes Educators (AADE) have published a Consensus Report to help guide the language used by healthcare providers to be positive, respectful, inclusive, person-centered and strengths-based, acknowledging the paradigm shift in diabetes care toward a collaborative approach that includes people with diabetes as the primary member of their care team. The recommendations reflect the opinions of the expert panel.

The panel’s recommendations, included in the article “The Use of Language in Diabetes Care and Education,” represent the work of the expert task force, which executed an exhaustive review of literature regarding the impacts of language used specifically in diabetes care and in health care generally. The task force made five key recommendations for discussing diabetes:

  • Use language that is neutral, nonjudgmental, and based on facts, actions, or physiology/biology;
  • Use language that is free from stigma;
  • Use language that is strengths-based, respectful, inclusive and imparts hope;
  • Use language that fosters collaboration between patients and providers; and
  • Use language that is person-centered.

The panel’s recommendations also include a detailed table of commonly used language with potentially negative connotations and suggested replacement language. The panel’s full recommendations will be published in the December 2017 issues of Diabetes Care and The Diabetes Educator. The complete article is available online in Diabetes Care at http://care.diabetesjournals.org/lookup/doi/10.2337/dci17-0041 and The Diabetes Educator at http://bit.ly/2yHE7PV. Additional guidance and tools are available at DiabetesEducator.org/language.

“People with diabetes face both the challenges of managing their diabetes and the added challenge of unfair stigma and judgement from others in society. The language used to describe people with diabetes, to describe management and treatment options and even to discuss how to reduce risk or delay the onset of diabetes can impact how individuals perceive themselves — possibly extending to health outcomes,” said the Association’s Chief Scientific, Medical and Mission Officer William T. Cefalu. “Just as we’ve shifted diabetes treatment to acknowledge the critical role of the person with diabetes in their daily care and advocacy, we must adjust the way we talk about diabetes to empower and reduce the negative stereotypes and judgement about diabetes.”

“As healthcare professionals, researchers, journalists and organizations that serve people with diabetes, it is imperative that we listen to those affected by the disease, understand the challenges they face and support a positive, inclusive environment“ said AADE President Nancy D’Hondt, RPh, CDE, FAADE. “Modifying how we talk about diabetes is a relatively easy change that can have a profound impact on self-management and outcomes. In this language movement, we hope to steer the conversation around diabetes to something that is both motivating and free of blame.“

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A step, at least, in the right direction, and years overdue.

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A major plea I would have is that physicians generally, for all major diseases, stop mixing ludicrously over-optimistic propaganda when characterizing conditions to their patients. In condition after condition, the dominant phrase used is ‘you too can have a normal life,’ even though it is palpably obvious that all the adjustments and interventions required to survive it make life anything but normal. Respect the patient by being honest, please.

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I don’t think that most clinicians understand or appreciate just how hard it is to manage diabetes well. We, as patients, aim for a blood glucose window that can seem incredibly small with the tools at our disposal. This lack of understanding undermines the respect diabetes patients deserve.

Langauge is important. Diabetes is an attitude game as much as it is a metabolic one. Doctors and other medical practitioners have the power to bolster or detract from the willpower of the patient. Attitude often precedes results. A good attitude increases self-confidence.

Diabetes is all day, every day with never a day off. We need compliments and respect to fuel the daily grind. Doctors need to be solid clinicians but they also need to be enthusiastic cheerleaders.

When I visit the doctor with a great A1c, I should never leave the appointment only remembering the hypoglycemia warning.

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I think I can sometimes downplay just how difficult good control is to achieve to others because I don’t want to become Type 1 Tim. Thankfully, I can talk to others here and feel the relief of knowing that I don’t have to explain what I’m talking about.

Most good clinicians can recognize when their patients are working hard at it. I think it can get harder when we get weary of it and it’s starting to affect our care of ourselves. I don’t need cajoling when I am struggling with motivation. I need perspective and encouragement just to do one thing to help myself.

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And in a sense, it’s not their fault that they don’t. They learn a lot of rules and principles in school, but the gulf between academic knowledge and real-world dynamics is rarely as wide as it is with diabetes. That’s why so many HCPs are firmly wedded to the one-size-fits-all mentality, and so censorius of anyone who doesn’t automatically get good results. I would go so far as to say that the difference between an ordinary HCP and a good one is whether or not they have open minds and are willing to be educated.

I’ve told this story before, but the last time I was choosing a new doctor I went to the trouble of meeting with and in effect interviewing potential candidates. One of them said—unprompted—“I don’t know everything.” He’s now my doctor and he treats me as a team member, not an errant pupil.

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I, too, like the doctor who is aware of what he doesn’t know about the different areas of medicine. S/he is confident enough in their skill set and realize no one expects full knowledge of anything.

While I agree that we shouldn’t expect doctors to be 100% cognizant of the patient experience, they should be able to discern the competence it takes to manage diabetes well. Even more than the average member of the public, they should appreciate the complexity of what we’re up against. They may not be fully aware of the extent of this competence but they should be able to infer this extent from some simple conversation during our visits.

It’s natural, even obvious to think so, but It’s kind of a Catch-22. Extensive education ought to confer some awareness of how much more there is to know, but people frequently don’t internalize it that way. Instead, they often take for granted that since they know so much more than anyone else, the opinions of those with fewer credentials can be safely disregarded. As with any other occupation, when you find one whose thinking isn’t canalized that way, you’ve found a winner. Hang on to them for dear life (literally, in this case).

Because most doctors have no idea how difficult it can be to control blood sugars, their first reaction to poor control is to assume the patient must be lazy, careless, ignorant, or cheating. They are really victims of a system which gives them very little education about diabetes as a lived-through condition, they see patient management only in the extremely artificial context of bedside hours spent with patients in a hospital, and then they are given the status of official authorities with the sole right to give medical advice and write prescriptions. So they are set up to be idiots, but have no idea of how profoundly stupid they look to the patients.

I think of the particular example of my endocrinologist for many years who was professor of endocrinology at the local university. After he married a type 1 diabetic, he apologized to me for how little he had actually known about the disease all those years of pompously giving me directions about the disease. As said before on this forum, if doctors would spend a single weekend with a type 1 diabetic, they would know more about the disease than they will otherwise learn over a professional lifetime.

Another ingredient in the stew is that doctors are chiefly trained to attack and defeat acute illness, not in 24x7x365 management of chronic conditions. Lots of factors in this equation, but we all know the end result . . . too well.

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