At TCOYD [Taking Control Of Your Diabetes], one of the sessions I attended was about Diabetes Police (Healthcare Providers) and Diabetes Criminals (People With Diabetes). And I was a little taken aback by the title of the session, but we used it to our advantage when we walked into the session a few minutes after it had already started.
“Okay, we see a few late stragglers in here. It’s not like they had to be on time or anything,” Dr. Edelman quipped from the front of the room, giving us a smirk.
“I’m sorry we’re late. But what do you expect? We’re the criminals, man!” I shot back at him. And the crew of us “criminals” took up the last few rows, our smartphones at the ready to Tweet out the best of the session. (We were the total nerd row.
The charismatic team of Dr. Bill Polansky and Dr. Steve Edelman were running this session, and it was packed with both PWDs [people with diabetes], caregivers, and medical professionals. Bill and Steve took to the white board, asking first for complaints that PWDs have about healthcare providers.
The list that was compiled ran the familiar gamut:
- HC providers are always late.
- They don’t work together (one doc may recommend a treatment that contradicts a specialist’s recommendation for another condition you may be living with).
- Docs set unreasonable goals.
- Patients are blamed for blood sugar numbers (the whole “good numbers/bad numbers” discussion).
- Patients want positive feedback, too, not just the negative stuff. (Stacey brought up a good example of her most recent A1C being the lowest she’s ever achieved, and her doctor said, “Nice job!!” It feels good to get patted on the back when you deserve it.)
- Docs say that they don’t have enough time to answer all the questions.
- Audience member: “[My blood sugar numbers were] creeping up for a long time, but ‘all of a sudden I was diabetic.’ Where was the preventative measure to bring them down?”
- One patient summed up the “seven minutes we get” sentiment with this statement: “It’s so hard to believe he’s paying attention because his hand is always on the doorknob.”
But it wasn’t all patients ranting about healthcare professionals. The HCPros had their time to voice their frustrations, too:
- Insurance companies actually grade us on the number of diabetes patients that make it “to goal” — regardless of the advancements that patients make, even if they don’t hit “goal.”
- One doc asked: ”Why can’t patients ‘get to the point’ and bring the most diabetes-related issues to the table? I want to help, but I can’t help with every issue they have.”
- Hearing the statement “You don’t know what it’s like to have diabetes.” Hard to make improvements suggestions because they aren’t taken seriously. (“I am an RN and my son thinks I can’t prick his finger, but his girlfriend can prick his finger.”)
- “I ran out of my meds.” Patients need to remember to renew/order/take their medication.
- When patients don’t update their medication list. “You know what I’m on.”
- When patients don’t know their own A1Cs
- “You never told me I was borderline diabetic.” Frequently, patients aren’t very honest about what they’re eating. (Bill: “So they’re also liars?”) Going on another medication costs too much, they don’t want a second med, etc. (Bill: Jokingly points to the word “idiots” on the sign.)
- Patients make up numbers on their logbooks, but the downloaded blood sugars form their meters tell a different story.
It was a good natured discussion, but some important points were raised by both sides. It’s not just the PWDs who are grappling with the healthcare system — doctors and nurses and CDEs are tackling issues, too. “We’re graded on how many patients we have that make that goal [the A1C target set by the American Diabetes Association], even if the patient has made tremendous advancements towards good health.”
(This issue resonated for me, because I’ve always struggled for an A1C under 7%. That pre-pregnancy goal took me a long time to achieve, and I conceived my child at an A1C of 7%. It dropped immediately and stayed very low and steady throughout my pregnancy, but for me, a goal of 6% pre-pregnancy was near impossible for me to hit without harrowing lows. My doctor and I had to take the blanket recommendations into account, of course, but we also had to tailor goals to my individual diabetes needs.)
I want this tattooed on my face.
The most refreshing moment of the session was near the end, when Bill took the microphone and offered this story as almost an aside.
“I realized I’ve told patients to keep 3 days of food records, but I’ve never done it, myself. So I tried it. And I lied. I lied on my food record, to myself. I was like: ‘I ate one Oreo.’ But I ate a whole sleeve of cookies.”
The doctor-patient relationship is just like any other — filled with dissenting opinions, moments of high triumph, and personal emotions. Living with diabetes, our disease requires our detailed attention every moment of every day. My hope is that healthcare professionals left this session understanding that their patients are more than their A1Cs, and that patients walked away knowing that healthcare pros are people, too. And that there’s a way we can meet in the middle and improve our diabetes health.
*This blog post was originally published at Six Until Me.*