Patient-First Care: Reframing the Language of Diabetes
March 12, 2024
Innovations in Diabetes & Metabolic Care | Winter 2024
According to a recent international consensus statement published in The Lancet, 80 percent of adults with diabetes experience stigma. Increasingly, there are calls for diabetes care providers to proactively minimize feelings of shame or isolation by adopting neutral, person-first language in their practices.
“Language is not stagnant — it is always changing to reflect what people are receptive to,” says Nicholas Galloway, BSN, RN, CDCES, Coordinator of Diabetes Education within the University Hospitals Diabetes and Metabolic Care Center. “In the clinical setting, we need to update how we communicate and build relationships with the patients we serve.”
The first step toward change starts with eliminating the word “diabetic.” In 2016, the American Diabetes Association (ADA) revised its Standards of Medical Care in Diabetes to state that diabetic should no longer be used. The policy aligns with the agency’s position that a diagnosis of diabetes does not define an individual. Instead, health care providers are encouraged to implement person-first language — “a person with diabetes.”
Galloway emphasizes that he does not correct patients who refer to themselves as diabetic but refrains from using the term himself. “Some individuals are proud to identify as diabetic, and that is perfectly fine,” he says. “I hope to convey that when clinicians adopt person-first, strength-based language, they empower patients and enhance their well-being.”
Diabetic Entrenchment
As electronic medical records (EMRs) become widely available to patients, it is evident how frequently the word diabetic has been embedded into the health care lexicon. Although the field of medicine evolves slowly, some changes are simple. For example, traditional definitions like diabetic retinopathy can be updated to diabetes-related retinopathy.
“Too often, the term ‘diabetic’ is fraught with pejorative assumptions of decreased willpower, overweight or inactivity,” says Galloway. “There are many underlying causes for elevated glucose that we need to investigate without preconceived, inaccurate biases of someone’s behavior.”
By fostering a holistic culture around diabetes, people can become more confident self-managers of their diabetes.
Changing the Paradigm
A Task Force comprised of experts from the ADA and the Association of Diabetes Care & Education Specialists (ADCES) released a joint paper that provides recommendations for language that “is neutral, non-judgmental and based on facts, actions or physiology/biology.”
Examples of problematic versus preferred phrasing include:
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Using diabetic as a noun or adjective.
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Avoid using a disease to describe a person.
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Terms such as non-compliant or non-adherent |
Focus on self-management instead of giving orders. Encourage what is working for the patient. |
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Labeling glucose levels as controlled, uncontrolled or poorly controlled |
Focus on A1C, glucose targets and time in range |
Social Determinants of Health
“Sometimes, I will get a referral stating a patient is non-compliant,” says Galloway. “There is a negative tone that does not speak to an individual’s active engagement in managing his or her diabetes or the unique challenges he or she may face.” Psychosocial or financial hardships may impact how often patients take insulin or whether they have access to healthy foods that support glycemic control. A facts-based approach to patient charting avoids adding layers of judgment.
“Patient not adherent with medication,” becomes, “Patient takes insulin once a week because of concerns over cost.”
“Maybe someone has a family member with a chronic condition or lost insurance coverage for preferred diabetes medications or supplies,” says Galloway. “There are so many reasons why people might not be able to prioritize their health at that moment. Our goal should be to build consensus, understand the root causes of challenges and collaborate on a plan to move forward.”
Dropping Control
Galloway explains that “control” and “diabetic” are inherently in conflict because diabetes is a disease of uncontrolled blood sugar. “In reality, we are dealing with dysregulated glucose,” he says. “Rather than focusing on control, we need to advocate for the individual in front of us and make practical recommendations based on lifestyle. Small steps can motivate big changes.”
For more information about person-first diabetes care, contact Galloway at Nicholas.Galloway@UHhospitals.org.
Contributing Expert:
Nicholas Galloway, BSN, RN, CDCES
Coordinator of Diabetes Education
UH Diabetes and Metabolic Care Center
University Hospitals Cleveland Medical Center