Doctors Need to Go Beyond A1C
A mother of a child with Type 1 diabetes argues it’s the only way to help people with Type 1 diabetes be healthy.
Diabetes doctors need better verbiage, according to a committee of psychologists, diabetes educators, and clinicians, who recently proposed a statement on language use for the American Diabetes Association and the American Association of Diabetes Educators. The rationale for the proposed statement is simple: language is symbolic action. When clinicians use words that imply judgment (“non-compliant,” “poor control”), they negatively impact their patients’ efforts to manage diabetes. Therefore, the committee suggests more holistic language that recognizes the patient’s dignity while promoting healing.
As both a rhetoric scholar and the mother of a child with Type 1 diabetes, I am pleased that experts recognize how much words matter. There is a lot of negative language circulating in discourse about diabetes, and we should critically interrogate the words we use to discuss the disease. The word “test” is such an example of language’s potentially negative impact. When a person—especially a child—with diabetes is instructed to “test” blood sugar, this person may feel as if he or she is performing. Words like “monitor” or “check” don’t have the same effect. Such words don’t put the person on trial.
But clinicians’ insensitive language is only a symptom of a bigger problem: diabetes doctors are too focused on the biological dimensions of diabetes and not the social, emotional, and psychological dimensions. The physician and medical historian Chris Feudtner makes this exact argument in his book Bittersweet: Diabetes, Insulin, and the Transformation of Illness, which chronicles the socio-medical phenomenon of diabetes over the last century. According to Feudtner, diabetes physicians have historically failed to acknowledge the extent to which diabetes shapes a person’s very sense of self.
So what should doctors do? How do they attend to these social, emotional, and psychological aspects of diabetes? For starters, they should go “beyond A1C”, as a recently trending hashtag suggests (#BeyondA1C). Rather than focusing exclusively on diagnostic data, doctors should take time to understand their patients’ vulnerabilities. I realize, of course, that endocrinologists are not psychiatrists, and I’m not asking for a full therapy session in each office visit. I am simply suggesting that doctors take a few moments during visits to learn of their patients’ fears, stressors, beliefs, passions, or goals. These experiences can’t be separated from the physicalities of the disease.
My daughter is fortunate to have a clinician who realizes this. Her pediatric endocrinologist is emotionally generous, as well as clinically instructive. Our appointments with her take no longer than any other specialist appointment—and yet, they are distinct for one particular reason: the physician is willing to enter our world, if only momentarily.
If she sees one of us carrying a book, she asks what we’re reading. When she inquires about the daily hours of physical activity, she also asks my daughter, “What’s your favorite thing to do on the playground?” To better understand diabetes management at school, she asks, “Do you have a best friend? Does she help take care of you?”
She’s also a careful reader. She acknowledges sighs and shrugs. During one office visit, she commented on a pattern of dropping-then-spiking after dinner: “I can see that she’s dropping after dinner and then you’re over-correcting.” When I exhaled loudly, she added, “I know. It’s impossible, isn’t it?”
She’s even cued into the body language that contradicts verbal responses. For instance, she once asked my daughter if she were getting enough to eat. My daughter answered in the affirmative, but her body language said otherwise. And so, the physician followed up: “Do you still feel hungry after meals?” Yes. “It must be uncomfortable when your belly is grumbling. Maybe we should give a little more bolus at meals so you can eat more.”
These small gestures are not time-consuming, and they make a difference. They tell us that she cares and that she understands how downright unruly diabetes can be. They also demonstrate that she is attending to the entire index of the disease.
Such acts of clinical imagination are imperative in diabetes treatment because diagnostic tests don’t tell the whole story. An individual might have a 6.1 A1C, but this doesn’t mean the person is “well.” In fact, this individual might have such a stellar A1C because he or she might be obsessing over food choices or avoiding social outings. And if guilt and shame shape one’s experience with diabetes, then one is certainly not “managing” this disease.
Holistic approaches to diabetes treatment aren’t merely an ideal; they are a necessity. Should diabetes doctors mind their language? Of course. But more importantly, they should mind their patients’ robust experience with diabetes. They owe it to their patients to acknowledge that diabetes is felt socially and emotionally, as well as physically. And they owe it their patients to base treatment upon the varied realities of living with the disease.
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