The Other Side of Non-Compliance (or, The Malfeasance That Dares Not Speak Its Name)

Community
#1

The term "non compliant" is entirely too familiar, either from personal experience or that of others. It gets used -- and more frequently misused -- by many in health care. That misuse has been and continues to be a fruitful topic of discussion in the diabetes online community.

That conversation is ongoing both here and elsewhere. I would like us to consider the other kind of non compliance: non compliance by health care professionals themselves.

What does HCP non compliance look like? It takes many forms:

• The doctor or staff person who promises to fax or email records to where they are needed, and doesn't

• The nurse who promises to deliver a message to the doctor and either doesn't, or scrambles it so that the doctor responds to you inappropriately (or not at all)

• The doctor who dismisses your symptoms or clear, unmistakable test results and says they don't mean what you think they do

• The HCP who simply doesn't hear what you say (because you are, after all, an uninformed lay person) and acts on what they "know" is really going on with you

• The HCP who sees dozens of diabetic patients yet whose knowledge of the current state of the art in diabetes is shockingly behind the times

. . . and I'm sure you can think of a great many more.

Perhaps we need to invent a term for physician non compliance -- a new buzzword we can add to the language and use constantly until it becomes commonplace.

Thoughts?

#2

This is a brilliant topic! I can only think of one polite way to describe at the moment to describe the apathetic nature had by many of the health care providers I've visited with. Not all, but a lot.

Underwhelmingly mediocre.

#3

When I was diagnosed in 1984, there was a strain of thinking amongst doctors that even "compliant" patient behavior was futile. They thought that expending large amounts of energy to keep BGs under some modicum of control was not going to alter the hopeless trajectory and progression of diabetes. They thought that progression was inevitable and secondary complications would proceed as fate unfolded.

When someone like me, highly energized to do whatever it took to maintain reasonable BG control, they didn't want to offer any hope. Of course, there were more hopeful doctors, often the younger ones. Looking back, a lot of things starting changing around 1984. BG meters were starting to come into use. We started to calibrate insulin dosing based on carbohydrate content in food rather than giving a fixed insulin dose and eating to that dose.

While I've often bristled at the ignorant and patronizing remarks that some doctors made, I do have a better appreciation for what they're up against. At least in America, endocrinologists seem dispirited by a health care system that makes them see a new patient every 15 minutes. How much dialog and understanding and real communication take place in 15 minute sessions four times per year? For a while I blamed doctors for this systematic shortfall but now I think that doctors are often victims, too.

The shame in a doctor labeling a patient as non-compliant stems from a lack of empathy and an evasion of responsibility to the patient's outcome.

There's been a lot written about a team approach to treating diabetes successfully. Now I know that some here claim that they have a great team that serves them well. My experience is that I see myself as the undisputed leader of any multi-disciplinary team by virtue of my "skin in the game authority." I will not take orders from any doctor that does not convince me with logic and a rational argument. I don't put doctors on the "god" pedestal and some doctors don't like that.

What can we, as patients, do to make things better for the next generation of doctors and patients? That's a direction in which I'd be willing to invest.

#4

Good points, Terry, all of them.

Just one comment on the old "complications are inevitable" thinking.

My good friend Bob recently passed away. He was 87 and the proud possessor of a Joslin 75 year medal. Pencil that out and it means he was born in the 1920s and dx'd in the 1930s. At his dx, Bob and his mom were given the then-current version of the "inevitability" mantra: that he would be okay for a while on this newfangled thing called insulin, but that in 10 years or so he would begin to go blind, start losing limbs, and die young.

Some time around the end of WWII Bob met a doctor who told him, "do what I tell you, live the way I say, and you can have as long and productive a life as anybody else." Which -- obviously -- he did.

So, there are good doctors and bad doctors, smart, aggressive ones and go-along-with-the-herd ones. Always have been; always will be.

#5

David..
Hmmmm. I was diagnosed in 1963. I had a very hardnosed pediatrician who demanded I become educated. At 11, he gave me Dr. Joslin's book. Told me to read it and to be able to answer questions about it at my next visit.

He also told me that if I did not follow his instructions, I would die. Heady words for a 11 year old.

Still here after 51 years. He taught me some important ideas about self awareness and decisions.

#6

I had a TERRIBLE doctor post diagnosis who told me I was crazy for wanting to test more than twice a day, that I was a type 2 no if ands or buts as I was not diagnosed with dka (though I suspect I had ketones and I was doing kusmal breathing when I went to the ER but okay then) in the ER and "adults can't have type 1." . She didn't listen to my concerns and barely talked to me other than gave me like enough to fill out a paper and said I was fine and not to worry and she'd give me a battery of tests in 3 months. After talking to the CDE and Dietian there they were like oh geez no you're not a type 2 , but we cannot do anything for you (and my insurance was no longer covering anyone at that office anyway after that point)get checked out further and they suggested looking into an endocrinologist so I did and that's where I"m at today and I'd say my endo's pretty good. He listens to my concerns, is pretty prompt about getting back to me (at least he always does or has someone contact me within 24 hours at most ) , and I also have got tons of free supplies from my diabetes team (I had like at least 4 free insulin pens , a ton of pen needles, a free meter, etc) and they never give me unnecessary negativity (the only negativity I got was for my eating disorder I was picking up which is not unnecessary I needed that negativity). They don't treat me like an idiot either and I like that. Then again my endo is a type 1 himself diagnosed at the same age where I feel like he has that connection some doctors don't where I'm sure that helps and overall makes him understand his patients a lot better and treats them with the same way he prefers himself.

#7

I had a different experience in the early to mid 80s. I was dx'ed in 1984 and then went to college a year and a half later. At college they gave me what seemed like an insane number of test strips, something like 7/ day, maybe they wanted us to test or whatever, but it was plenty to fuel my wild lifestyle and kept me at it for a while. Go drinking, head home, pick up a twelver for some light night fun, fire up the strobe lights and test and shoot up was pretty normal. My social circle was full of people passing out so some of the stigma was dissipated. I like the idea of smart, aggressive doctors and fired one recently who wasn't!

#8

My late mother was dx T2 in the 1980s. She always seemed remarkably non-compliant. She ate large amounts of carbohydrates & covered with insulin. No exercise. With time, she developed diabetes-related complications.
But in retrospect, we wonder what kind of guidance/education she received from her GP. I don't think she ever saw an endo or took part in a diabetes education class.
When I was dxed a few years ago my mother was my role model of what NOT to do.

#9

Personally, I hate the word non-compliance. Non-compliance is a "failure to act in accordance with a wish or command." I have been labeled as "non-compliant" by doctors because I didn't follow their orders. It has been reported to my insurance company and was used as a basis to deny me life insurance. The fact that my doctor had ordered me to do something that endangered my health and possibly my life mattered little. I felt that my right to make decisions had been usurped. This whole non-compliant thing frames the problem of health with the doctor at the center making decisions and barking orders.

Instead, I like the term non-adherent to mean that in a patient centered approach my doctor makes recommendations and together we agree to a plan. But if I don't follow the plan I agreed to, that is non-adherent. And I rightly can be criticized for not following the plan. But if I am adherent, but non-compliant that is entirely my right.

And I do think we need to apply that in reverse to doctors. If a doctor tells me they will do something and they don't, then they are non-adherent. And if I ask for something and they refuse, they are non-compliant. I a doctor is non-adherent, they should rightly apologize for not fulfilling their promise. But a doctor shouldn't necessarily be criticized for non-compliance, they are asked for their recommendation and if we don't like it we can choose another doctor, but it isn't our place to force a doctor to do anything. Unfortunately, I suspect I will have to continue to put up with a lot of non-adherence and non-compliance, but at least now I am armed with some words to really irk them.

ps. I also like to call doctors that resist prescribing insulin as "insulin resistant."

#10

I loved your last line, Brian! You gave me a good laugh for the day!

Best wishes,

marty1492

#11

+1