You’ve heard of Brexit, Great Britain voting to exit from the European Union. I'm thinking about Dexit, exiting from the Diabetes Union. That stronghold of health professionals, insurance companies and regulatory agencies that impose impossible standards on people with diabetes.
Standards may be causing more harm than good. Just take a look at these:
Standard #1. You Can Control Blood Sugar
No, you can’t. Once people no longer have a properly functioning pancreas, their blood sugars are designed to be out of control. Yet we make people with diabetes feel achieving “normal” blood sugars is just a matter of being diligent. Worse, when they don’t get them, we call them lazy, irresponsible and unmotivated.
I was on a panel for the psycho-social side of diabetes at this year’s American Diabetes Association’s national conference. Moderator Barbara Anderson, PhD and Professor of Psychology’s first question to me was, “What do you find tough about living with diabetes?”
“The toughest thing is you can’t control it,” I said. “And I'm tired of everyone telling me that I can.” I had to stop as cheers rose from the audience. We patients know this.
Yet we and our blood sugars are constantly judged, rated and compared to people without diabetes. No matter how many “right” things I do, there are too many variables – known and unknown – for me to control the outcome. Read Adam Brown’s wonderful list of 22 factors that influence blood sugar.
Standard #2. Blood Sugars Can Be Predicted Based On Your Actions
No, they can’t. My actions help influence my blood sugar, but they don’t ensure the numbers I hope for. Many times not even close. Why else would we talk about the "X factor"? Do the same things two days in a row and you’ll get different numbers.
Many in business and the military are familiar with the term VUCA. It stands for Volatile, Uncertain, Complex and Ambiguous. It is an acronym for situations that are rapidly changing and challenging where choices and consequences are unclear. Diabetes is a VUCA disease. Especially type 1. Dealing with anything VUCA requires emergent, in-the-moment solutions. Hmmm...the opposite of standards.
If we respect the VUCA of blood sugar management, then we need to work with people differently. We need to help people discover actions that will create the greatest potential for in-range blood sugars - for them, and how to respond when those are not the numbers they get.
Blood sugar management is not cause and effect. People with diabetes, because they have diabetes, are now designed for unpredictable blood sugars. Not acknowledging this truth causes people to feel like failures. Much of the heartache of living with diabetes.
Standard #3. You’re Just a Disease So Ignore My Language
Language is powerful. In diabetes it often creates critical self-judgment. Why are we still using, “Test your blood sugar” instead of “Check your blood sugar?” You do get that “test” alone implies judgment – we are either passing or failing with each blood sugar “test."
There's been a push to get away from labeling blood sugar numbers as “good” and “bad.” They are best used as information to guide our actions forward. Yet why do we call extra doses of insulin “correction doses?” Did we make a mistake the first time?
Have you ever heard the words “non-compliant” and “non-adherent” used outside of diabetes? These are medical terms that have crossed over to judge people. Enough said.
Standard #4. Use Huge Population Studies For Universal Standards Of Care: What Works For The Average Will Work For You
Really? But I’m so un-average. I’m a 62-year-old Caucasian woman of Eastern European descent living in a much too small one bedroom apartment in New York City. I’m 5’4”, or used to be, 125 pounds, on a good day, and if I look at a donut I’ll gain weight just like my rolly polly ancestors.
I have had type 1 diabetes 44 years, a good ten years before I had a glucose meter. I was put on orals the first three years being wrongly diagnosed with type 2. Although I identify as a New Yorker, don’t ask me where to get the best bagel. They’ve long been off my low carb diet.
How much do I have in common with another type 1, let alone a type 2? How much do they have in common with me?
Whittling everything down to the lowest common denominator doesn’t work for individuals. Who are we treating - flocks of geese, herds of cows, or people? We minimize getting it right for individuals when we start from the average.
I don't want to give you a fifth standard because that would be so standard, but I must acknowledge this crippling standard for our health care providers.
Standard #5. The Impossible Standards Placed on Health Professionals Who Work With People With Diabetes
The health care profession increasingly has misplaced the word, "care." Not because those who go into the field don't have it, don't want to give it. But because the health care "system" has nearly made it impossible.
Twelve minute visits, half the time spent on electronic records, picking codes and "checking boxes," as one educator nearing her certification said to me. Making sure you covered what was on someone else's list, not yours.
Diabetes care, as medicine has become institutionalized, modern and test-based, has become looking at the parts - blood sugar, cholesterol, blood pressure, cardiac markers, microalbumin...and missing the whole - the person sitting there.
These standards, meant to improve patient's health, is in part why so many people with diabetes do not improve.
We could help people manage and live with diabetes a lot better by telling the truth about “controlling” blood sugar. That life without a working pancreas is VUCA. By not labeling people and measuring them against the average. By supporting health providers to be with their patients.
Equipping people to best manage their diabetes and remain invested in doing so starts with a message like this from a health professional, “Keeping your blood sugar in range is hard work. All I ask is that you do your best most of the time. We’ll figure out your unique health patterns together and how you can get blood sugars in range more often. And when they’re not, when you do all the “right” things and your numbers don’t reflect it, you’ll also know how to respond - without blame or self-judgment. Because, it’s just another diabetes day.”
That's the standard of care I'd like to add to diabetes.
Maybe I don’t want to Dexit but move to the side. The side where we tell people living with diabetes the truth. The side where we focus on what people do well, help them build on their successes and champion them forward.
Think about it. Standards really don’t belong in diabetes standards of care.