Ever wonder how diabetes educators are trained to deal with us patients? That’s the most intriguing thing for us about covering the American Association of Diabetes Educators annual conference. Out of 15,000 attendees, we could probably count the non-CDE attendees on one hand. Not many actual patients are in attendance, so these CDEs end up talking and learning about “us” in absentia.
One session title that particularly intrigued us was titled “Dealing with Patients Who Just Won’t Change.” Ack! That didn’t sound promising. Was this going to be a rant-session all about how horrible us “noncompliant” patients are? A woe-is-me diatribe about all the ungrateful patients these CDEs have to deal with? I’ll admit: I was suspicious. What exactly where these CDEs going to hear about us?
But you know what? I actually liked it. Shocking, right? Keep reading…
Tackling Communication Issues
This session was led by two Michigan-based diabetes educators, the AADE’s Educator of the Year, Ann Constance, and her colleague, Cecilia Sauter. 
The ladies started off with two rather hokey skits to illustrate why patients have such a hard time listening to their CDEs. In the skits, one woman played a “bad” diabetic (high A1c, low activity level, little understanding about their diabetes) and the other woman, a CDE.
“We are the ‘experts’ in diabetes — so why are they not listening?” Cecilia asked the audience.
The skit was meant to illustrate why patients have difficulty following directions: the PWD character was a recently widowed man who was going out to eat a lot because he wasn’t used to cooking. The CDE character asked a barrage of questions and then provided unrealistic recommendations like never going to fast food restaurants. Of course, unrealistic recommendations usually lead to… patients not following through. Which leads to the controversial (and rather derogatory) label “noncompliant.” The second skit showed a successful CDE who, of course, actually listened to the patient, taking the person’s real lifestyle and concerns into account before suggesting — not ordering — some things to change.
“When our patients feel that we are actually listening, they are more willing in starting to make changes,” Cecilia explained. Seems kind of a “duh” statement from my POV, but it was a relief to know that the hundreds of CDEs in the standing-room-only ballroom were hearing it too! “It takes about two minutes for the patient to tell us what concerns them. Otherwise you are just background noise.” Uh-huh!
What does that mean for us patients at home? If our CDE (or endo!) isn’t listening to us, we have to pipe up! It doesn’t do us any good if we feel ignored, belittled or pushed aside. Our educator’s job is to help train us to manage our diabetes when they aren’t around, so let’s make sure that’s what they are actually doing.
Goal-Setting and Problem Solving
The presenters here talked about several methods for identifying issues, overcoming challenges and generally helping patients improve their diabetes self-management. Importantly, they noted that identifying how ready a person is to make a change is actually more important than identifying what needs to be changed. In diabetes, there are a ton of tasks to conquer, and any given patient might need help in several areas: testing more often, remembering to take our meds, carb counting, or exercise (or all of the above). All of these are important in diabetes, but not everything can be your immediate priority, right? So CDEs need to help us figure out what will bring us the “bang for our buck” in the short and long-term.
Here’s one example recounted: an overweight patient who’s told by her endo to lose weight. Her CDE then plans to concentrate on weight loss, but when the patient comes in to see the CDE, she says, “I’d really like to quit smoking.” Although this wasn’t what the endo recommended, it was a priority for the patient — and also a great health goal. Over the course of a few months, this patient successfully quit smoking, the presenters said. Moral of the story: even if our CDE or endo recommends one thing, we need to speak up for ourselves and realize the areas of our health that we are most committed to and passionate about fixing.
Once a problem is identified, there were several options presented for goal-setting and empowering the patient. One method I particularly liked was the 5 Step Model for Empowerment:
- Explore the problem
- Clarify Feelings
- Develop a plan
- Commit to action
- Experience and evaluate the plan
It’s fairly intuitive, but what I liked was that Cecilia steered away from using the term “goal” when working on changes. She says to call them “experiments.” You try something, and if doesn’t work, you move on. Sound familiar?
“When an experiment doesn’t work, does it mean I’m a bad scientist?” she says. That statement gave me a special kind of hope, not just for the CDEs’ sake, but for my own ability to cope with this confounding and frustrating disease. Who says I’m a bad diabetic because I went low during exercise? Or because I went high after trying a new restaurant? Who says I’m a bad diabetic because I have trouble committing to going to the gym? Diabetes is complicated and behavior change is a struggle — not because of us, but because of the disease. Just because something doesn’t work does not mean we are failures — it means that what we tried just isn’t for us! And — surprise, surprise — everybody is different.
When evaluating a diabetes “experiment,” the ladies suggested asking patients the following questions, which I think, in turn, we can simply ask ourselves:
- How do you feel about what you accomplished?
- What barriers did you learn about?
- What support did you learn about?
- What did you learn about yourself?
- What would you do the same or different next time?
Beyond the Doctor’s Office
It was a repeated mantra throughout the entire conference: CDEs need to help patients take care of themselves when the CDEs aren’t around. Go figure. Especially because the current ratio of CDEs to patients is one for every 1,517 patients a year. There’s no way CDEs could reasonably provide ongoing support to everyone in this country, even if everyone had access and coverage to visit a CDE!
Ann and Cecilia offered up a few “outside” resources, like Weight Watchers meetings that could help facilitate weight loss in a consistent and community-based way.
The only part of the session that had me cringing was what wasn’t said. There was absolutely no mention of the Diabetes Online Community, which I thought was slightly ironic considering that session took place just prior. It would have been a perfect continuation of the theme of diabetes support and education.
On the other hand, I was hardly surprised. The DOC is still very suspicious to most CDEs. At the end of the session, I did speak to Cecilia and thank her, and I asked her point-blank how she felt about blogs and the online community. She told me that she thought certain “vetted ones” were very helpful, but there simply wasn’t enough time to cover all the resources. Hmm.
Hopefully by next year, the DOC will no longer be an afterthought in resources for patients! What these educators may not realize is that it may be much easier for us to take advice from and get motivated by each other on things like lifestyle changes.
Interesting comment about ‘vetted’ sites. I wonder if we could connect to the CDEs and provide a (LOOOOOOONG) list of sites that provide useful information. There’s a lot of really great sites (including the ‘Mine), and just because the CDEs are ignoring them that doesn’t mean their patients aren’t finding out about them. If the CDEs get involved in the DOC conversations, then they might find themselves more qualified/able to deal with the real-life situations we’re all struggling with.
Great post. All diabetes patients should read this post. I am twitting this post for benefits of diabetes patients.
I really enjoyed this article, thank you. I have been recently getting notifications on my phone when you all post articles and I’m so happy I found this sight! My mother is a type 1 diabetic and living with her has encouraged me to become a CDE someday..I still have a few years left..but reading these articles has really opened up my eyes to how a lot of CDEs work and I agree with you all 100% that they Need to listen to everyone online. That is where our nation is at now, everything and everyone is online and they really should take advantage of the opinions and feelings of diabetics. Hmm, I know where i’ll be getting a lot of information when I begin my career hah. Thank you again for all the articles!
It’s a shame that they haven’t realized the value of the DOC. Patients can get 24/7 support from the DOC as well as motivation and tons of encouragement. My life changed so much for the better when I found the DOC. Now, I could never go back to the way I was before…which was not a very happy PWD. Hope they do include more on that next year. Thanks for sharing, it’s interesting to see it from their perspective!
I was one of the few “patients” (don’t like that word) attending!! I was most fascinated by the Food, Fat and Satiety, and Fructose and CVD: A Not So Sweet Connection presentations. If you can download the pdf files, they are well worth reading, although these ladies said a lot more than is in the slides.
I certainly think we need more of a presence at professional meetings, however cost is very much an object for most people. Somehow, we need to get it through to them that diabetes MUST be a partnership, not a doctor and CDE/patient relationship.
My CDE friend, non-diabetic, who roomed with me told me it was very educational for her to actually live with a PWD — she got to see what a hassle it is, especially when you’re low and confused, or when you have an infection (I developed a UTI, and had to decide whether to go to the ER or to wait it out until I could get a message through to my doc, and get a prescription phoned in — $45 cab ride for a $5 prescription, because I didn’t know where the closest pharmacy was!).
I WAS impressed with the level of knowledge and commitment that the CDEs demonstrated, but it’s the partnership component that’s missing. I didn’t really like being talked down to, when I asked questions. Sometimes I was just confirming my own knowledge, and didn’t like being treated like I was stupid. And I didn’t like the fact that they assumed I was Type 1 when I asked Type 1 oriented questions, and Type 2 when I asked Type 2 oriented questions. As if I couldn’t advocate for EVERYONE!
So, I hope we have some representative at all the important conferences, and find a way to make ourselves more of a presence!
Maybe they are just not concern to their health, they make every thing simple. At somehow they have a point, worrying doesn’t change everything. But they should follow their doctors.
Great post! Maybe when the CDEs listen to themselves a little more about the important of support in acheiving goals, etc., they will see the value in the DOC. What if they think about it like this?: As valueable as it is for all CDEs to gather together to learn from each other (ie the AADE conference), is as valueable as it is for PWDs to gather together and learn from each other (ie the DOC).
The condecension is what most irks me about the whole clinical aspect of managing diabetes! Grrrrrrr! Maybe someone should do a study comparing clinical and satisfaction outcomes between CDE-patient engagements that respresent “respectful engagement” vs “condescending and authoritative speak.”
Years ago, I thought I wanted to become a CDE. I ran into a Catch 22, because in order to have finished the courses and field work for an MSW, I would have needed to quit my job (and lose my health insurance!) Anyway, when I did attend an AADE conference, back in the 1990′s, I ended up rooming with a CDE who was not a Type I diabetic (or, in fact, any diabetic at all) – though she was a nurse. She was intrigued by how frequently I tested my blood glucose, and the large variations it encountered following a very strict meal plan. I am happy to report that she told me afterwards “Wow! I have never roomed with a diabetic before. Thank you! You have given me great insight into what it is like to have to LIVE with this disease!”
My experience with CDE’s
CDE 1. Has diabetes, uses a pump. Talks down as if you are stupid even though you are also on a pump. Worthless office visits.
CDE2. Has diabetes, uses a pump. Friendly, honest, practical and living a very normal life. Doesn’t talk down, talks equal. Eats real food.
The DOC is important, however, a great deal of newer generation type I and IIs are acting like they know better than the trained professionals. Many are mocking the CDE’s and what they teach or the views they convey.
I think there should be a balance. And the ones I really like I will take advice from and I wont be bad mouthing. Nor will I act like I know far more than they do. The others simply won’t be getting my business.
JBS, maybe you have a choice of CDEs, and diabetes professionals, but many of us don’t. We take what we get, and sometimes it’s case 1 (or maybe nothing at all). I only got real diabetes education in the beginning from the DOC — lucky enough to be diagnosed as an adult in the computer age, even if it was the wild and woolly Usenet. Now I try to give back what I can — I don’t diagnose or tell anyone what to do, but I DO suggest ideas for them to talk to their docs and CDEs and dietitians about. But when it’s case 1, it gets very hard. And people need to be empowered to advocate for themselves.
I wish I had a CDE that I could actually listen to his/her advice. Much of the advice given to me over the years has been as if they were talking to a child. I am compliant and I do want to learn better ways of controlling my diabetes, but so far it hasn’t been education I’ve learned from a CDE. To me the DOC has been much more help than my Endo, GP or the CDE ever thought of being. There must be good ones out there, but not in the area where I live.
I’ve had educators before that barely look you in the eye. Like I would trust them or do what they say! However, I really love my current CDE. She is a Type 1 pumper, very knowledgeable, down-to-earth, and very reasonable with her approach to my care. She even gives out her personal email to patients. That’s what I call dedicated! For those of you who haven’t found a good one, keep looking beacause they are out there! In my opinion, the medical field is like all other fields; there are going to be good professionals and bad ones. It’s our job to sort them out!
My CDE is a pumper at Kaiser. Seems pretty knowledgable and friendly so far. Have only met her once. She did email me congrats for good management on my bg’s though so that was nice.
This word “compliant” is so irritating. Like I am bad somehow if I don’t comply. This is a free country for god’s sake. I personally think a lot of what cde’s teach us is canned for general consumption and there is no thinking going into it at all. D is not a one size fits all disease and they still don’t seem to realize that fact.
Sorry to hear you were disappointed the DOC was not mentioned in this session. I attended this session (I’m a diabetes educator) as well as the session on the DOC. They were both excellent! I am in the process of putting together a quick education session on the DOC for my patients. I think the online community is a valuable resource for information and support! I will continue to visit this community (and others), learn from it and recommend it to my patients.
I’m sorry to hear you were disappointed the DOC was not mentioned in this session. I attended this session (I’m a CDE) as well as the session on the DOC. They were both excellent!! I think the DOC is a valuable resource for information and support. I will continue to visit this community and others and recommend them to my patients!