Hey, diabetes educators: It's not about you; it's about us people with diabetes.
At the annual meeting for the American Association of Diabetes Educators (AADE), I sat in on several sessions focused on teaching CDEs how to be better educators. While it was reassuring to note that the trainers are starting to grasp that they need to talk less and listen more, it also reinforced my perception that the vast majority of diabetes educators really could learn a thing or two from the Diabetes Online Community.
For me, the DOC helps me cope, keeps me grounded and sane, helps me figure out the missing pieces in my diabetes management.
But the online community isn't the go-to resource of information for many PWDs. That role falls to the diabetes educators. And too often, these D-educators are only focused on what a patient is doing — Are they eating right? Taking their meds and checking their glucose? Are they exercising regularly? — while completely glossing over the essential element of what a patient is feeling.
Emotions guide us as humans, so they are vital to our motivation and actions. Thankfully, some of the sessions at AADE did focus on how feelings manifest for PWDs.
One focus topic was exploring the difference between "distress" and "depression."
In her session, "Diabetes Health Distress," Martha Funnell, RN, CDE of Michigan Diabetes Research and Training Center, explained that while clinical depression is a well-known complication of having diabetes, daily "diabetes distress" is actually more prevalent. Distress is essentially the bucket term for many negative emotions we might feel, including fear, anxiety, guilt, and anger. Most people feel diabetes distress at one time or another, but for many it's ever-present. In the expansive DAWN study on the psychosocial aspects of diabetes, 85% of people felt distressed at their diagnosis, and 43% still felt distressed 15 years later.
Most of us have felt distressed at one point in our lives, but diabetes educators don't seem particularly tuned in to this problem. While Funnell spent a portion of her session discussing how to identify distress, two other diabetes educators, Mary Ann Hodorowicz, a registered dietician and CDE in Chicago; and Janis Roszler, a CDE and family therapist in Miami, discussed patient empowerment and how educators can do a better job of helping us manage the stress that diabetes brings.
It was a nice surprise to hear Hodorowicz speak candidly about her own mistakes to a standing room only audience of educators. In the introduction to her session, Making Your Patients A.D.O.P.T.E.E.S, Hodorowicz shared that her clinic patients many years ago hated her because she never paid attention to them. They complained about her to the doctor and did everything they could to avoid seeing her again! Yikes!
Hodorowicz soon learned that in order to work well with her patients, she needed to work on herself first: "I have to change my behavior to change their behavior. It was hard to change my behavior. It takes a long time to change." I appreciated hearing first-hand from a CDE that they aren't perfect either, and thus can't expect their patients to be.
Hodorowicz stressed the importance of diabetes educators having a relationship and partnership with their patients. She explained that by developing a rapport, patients are more likely to engage with their diabetes educator.
"If you think for any second that you know more than your patient, you're not in an equal relationship," she said. "Do you like being around people who make you feel inferior? Let's not do that to our patients."
In our AADE recap earlier this week, we reported that a recurring theme at the AADE conference was CDEs doing less talking and more listening. It's amazing how much CDEs can miss or not realize about a patient's stresses simply because they're doing all the talking (!)
The ideal ratio is for educators do 20% of the talking and 80% of the listening, Hodorowicz believes. How close are CDEs to that ratio now? Most of the audience admitted they do about 50% of the talking. It's traditionally been done that way because educators are required to... you know, educate their patients... based on an established curriculum created by either the AADE or the American Diabetes Association.
But life doesn't always follow a curriculum (I swear!), and attendees were encouraged to focus a little less on the official material and more on what patients are actually concerned about.
Funnell highlighted the fact that our healthcare system is starting to trend toward patient-centered medical care (ya think?), and to do that, diabetes educators need to focus more on the thoughts and feelings of patients, not just on what they do or don't do.
"If we only do our agenda, it's not patient-centered, it's provider-centered," she said.
Hodorowicz pretty much agreed, saying in her session that educators have to do less on "firehosing" a patient with tons of information. She also warned against educators "lording over" patients, because people can sense a change in tone and demeanor and will tune-out information.
"You can show off your knowledge when you speak at a conference podium — that's it," Hodorowicz said. "When you're with patients, you have to minimize yourself to maximize the patients."
So, what's the key to "maximizing" patients to do what they need to?
Hodorowicz said it's important that we, the patients, come up with our own goals and solutions for ourselves. Not only so that we understand them, but so that we accept what we need to do and can take ownership.
"If you try to persuade patients to change, it will backfire. Patients will 'dig in' to protect and defend the exact same negative behavior you want them to change. It's a paradox."
— Mary Ann Hodorowicz, registered dietician and CDE in Chicago
Hodorowicz's words are so true! I can't tell you how many times I've been told or read somewhere that in order to be healthier or have better blood sugars, I need to X, Y, and Z. All of which I hated and didn't want to do! If someone else wants us to make a change, where is our motivation coming from? The motivation to change needs to come from us.
But what about when things don't go according to plan, even when we really try? Encouragement from diabetes educators is key to patient self-esteem, CDE and family therapist Roszler pointed out. She hosted a session on patient self-esteem, which hit a cord with many in the room who acknowledged they get many crying patients in their offices.
One point Roszler made was that most educators teach to the curriculum and focus on accomplishing objectives... with very little appreciation for progress! Example: If a patient was instructed to lose 50 pounds and lower his or her A1C from 13% to 7%, but only managed to lose 5 pounds and lower that A1c to 10%, most educators are going to label the patient with the dreaded N word... "non-compliant."
Patients then feel all their work is for nothing, and they quit! Yea, that's so NOT productive...
I agree with Roszler that staying positive with patients is absolutely crucial. And I'll add to that: we need to stay positive with ourselves. I don't see a diabetes educator nearly as often as I used to now that I've had diabetes for nearly 20 years, but I can be just as critical with myself over what I should be doing, and not nearly appreciative enough over what I have accomplished.
Roszler also emphasized that how we feel about ourselves isn't necessarily based on fact; sometimes it's perceived and that can be difficult to tackle.
"We write our own stories," she said. "As a therapist, if I find that your story is problematic and preventing you from growing, and preventing you from reaching your goal, then we have to look at your story."
Overall, most diabetes educators think that PWDs need them and that's true. We do. But we need them for a lot more than just instructions on how to use a glucose meter or what our target blood sugars are. The psychosocial aspect of support is a missing piece of the puzzle too often, and we're glad to see they more CDEs starting to embrace this more as the business of D-Education continues evolving.