Noncompliant. That is a very touchy subject for me and I get a little angry sometimes when I see that word being tossed around.
I do get that there are non-compliant people out there. There are people that don’t care. The American Diabetes Association suggests that A1cs be below 7% and the American Association of Clinical Endocrinologists suggest that A1cs be below 6.5%. Unfortunately, the majority of diabetics don’t even have an A1c below 7.
One of my aunts is also Type 1. When her doctor would ask her to call in her blood sugar numbers, she would actually make up numbers. I am sure her doctor had to realize those numbers were made up, but how can a doctor help someone when they do stuff like that.
One time, I was at the podiatrist and I could hear him in the next room with another patient. She apparently had surgery on her foot and was supposed to be staying off her foot. She had a million reasons why she couldn’t. When I was talking to him, he asked me a question about something. I don’t remember what the question was, but he then said, “most people would find 17 reasons why they could not do something.” He was right, most people do come up with a long list why they can’t do something.
Yes, I do understand that there are people out there that are not going to do the things they need to do. But there are also people that really have not received proper training or even basic knowledge to truly see what is going on.
I had another aunt that was Type 2. Not too long before she died in 2000, she was put on one shot of Lantus at bedtime. Prior to that, she had never been given a meter to check her blood sugar. When she started Lantus, she was given a meter and told to check her blood sugar in the morning. One day when I stopped to see her, she was bragging because her blood sugar that morning was in the 80s or some really good number. She asked me what mine was that morning and my fasting blood sugar was higher than hers. I also asked her what her blood sugar before lunch, dinner or bedtime was. She did not know because she was only told to check her blood sugar first thing in the morning.
The next time I stopped in, she told me that she decided to check her blood sugar at other times of the day and was very surprised at how much her blood sugar went up by lunchtime. Maybe she would have been like her sister that made up numbers, but on the other hand, maybe she would have seen what some of the junk she ate did to her blood sugar if she had been given the opportunity to test and see that.
Right around the time I started having problems with gastroparesis, I was also switched to Lantus. My doctor pushed the standard marketing line for Lantus that it was a one shot a day insulin. At the time, I was working long hours and did not have the time to get on the internet and learn about the stuff that doctors failed to tell their patients. Between the gastroparesis and the Lantus that I was taking once a day, my blood sugar was bouncing all over the place. Gastroparesis itself is a challenge because if you take insulin and your meal does not digest, your blood sugar will crash. If your insulin is worn off and your meal decides to start digesting, your blood sugar goes high.
My doctors were aware that I had gastroparesis. They certainly should have been aware of the problems gastroparesis causes with blood sugar. Instead of receiving help, I was criticized for my control. One time when a doctor was criticizing me, I even said, “tell me what to do and I will do it.” Instead of being offered suggestions, I was met with blank stares. But I was deemed noncompliant – and yes, that word was actually used in my file by that very doctor.
When my foot was infected, I was admitted to the hospital the same day that I decided I needed to look for another doctor. My sister had a name of a doctor in Pittsburgh and she actually called and made the appointment with him for me while I was in the hospital. I was actually told by the doctor that I was switching from that I could not go to Pittsburgh – had I listened, I would not have my leg today. But I was noncompliant because I checked myself out of the hospital to get a second opinion.
The new doctor in Pittsburgh wanted my medical records. I had to get the records from that hospital stay and from the wound center there. The word “noncompliant” was mentioned several times in my chart; however, there was no mention how I was noncompliant. Was it because my blood sugar was screwed up? I had gastroparesis and an infection going on for several months, both of which screwed up my blood sugar, but there was no mention of either of those things as a cause for problems with my blood sugar. No one offered advice to help with those things but yet I was the one that was noncompliant.
The night that I was admitted to the hospital, the admitting physician withheld my Lantus so of course, my blood sugar shot up over night. He walked into my room the next morning and made some nasty comment about how high my blood sugar was and I told him that it was high because he withheld my insulin. He just stood and stared at me. There was no mention in my chart of the fact that he withheld my insulin but he actually used the term noncompliant in his report.
I did everything I was asked to do. I stayed off my foot. I took the medicine they wanted me to take. I had home nurses and family members changing the dressings for me. But yet, I was noncompliant and there was there was no mention of what I supposedly did not do.
There was no mention in my chart that the doctor had me on an antibiotic that did nothing for the infection I had (if you have never seen a copy of a culture, they list what antibiotics will work with the particular infection you have). There was no mention that I had both a culture and an MRI that showed I had an infection. The doctor insisted my infection was gone, stopped antibiotics and put a wound vac on my foot – that in turn caused my bone to turn to mush. But I was the one that was noncompliant.
I guess the doctor was concerned that I would sue him so they needed to cover his a** and point the finger at me. Fortunately for him, I don’t believe in suing people. That does not make what he did right.
I know noncompliant people are out there- I have seen it in my family with my aunt. I also know that doctors use the term when they should not be using the term – I have had that happen to me. Neither of those situations is right. Because there are so many people that won’t do what they need to do, when there are people that are trying and struggling, it automatically gets “assumed” that they are not doing what they need to do. That is not right either.
As patients, we need to be held accountable for our actions. I also think that if a doctor is going to label someone noncompliant, they need to be held accountable for their actions also. What education did the patient receive? Does the patient understand what is going to happen? I think if a doctor is going to use the term noncompliant, they should have to fill out a noncompliant form that the patient has the opportunity to sign off on. The doctor would have to state why they are calling the patient noncompliant and the patient would be given the opportunity to present their side of the story. The patient would be able to list their 17 reasons why they are not doing something! In my case, if the doctor had said my blood sugar was out of control, I would have stated that I agreed with him that my blood sugar was out of control. I also would have added that I had gastroparesis and I did know how to fix the problem. The ball would be back in the doctor’s court to explain why he did not help me. I understand that most doctors don’t know how to help a patient with gastroparesis but don’t blame me because you don’t know how to help me. I am not noncompliant when I ask you for help me and you don’t help me.
Noncompliant. That is a very touchy subject for me and I get a little angry sometimes when I see that word being tossed around.
Thanks for writing about this topic. This is a pet topic of mine. I am a “noncompliant” patient and proud of it. But the plain fact is that I “Self Manage” my diabetes. I don’t passively sit there and do whatever the doctor says, I have the leading role in my diabetes management. But that is not the way the doctors see it, they beleive the “make the decisions.” My failure to follow exactly what they say has resulted in my being labelled “non compliant” just like you. It has consequences, I was unable to obtain life insurance because of my “non compliance” and it was reported to my health insurance carrier.
I have come to beleive that the label “non compliance” should be eradicated. Instead, I will only talk about “adherence” and “nonadherance.” I make the self management plan for my care. I will listen to the doctors, but I am in the drivers seat. I am adherant if I follow the plan I agreed to and nonadherant if I fail to follow that plan. If I decline the doctors advice and tell him that, it is “wrong” to call me “noncompliant.” If I make my plan to eat low carb and I fail to follow through with my own plan, then fine, call me nonadherant, I will have actually failed to do what I said I would do.
The whole “noncompliant” thing makes me angry. Not only is it used like you note to shift blame onto a patient, but it is used by the system to deny the role of the patient in self managed care.
Thanks BSC. I have seen a couple posts recently that triggered this post. Since finding the DOC (in my view, the right kind of doctor!), I have solved the gastroparesis problems and have good control. The things I do to get good control go against what doctors think I should do. Because I have a decent A1c, I don’t get labeled as noncompliant even though I don’t do what doctors think I should do anymore.
I agree with you that we should be able to develop our own plan and if we don’t follow thru, then we can be labeled nonadherant. I don’t fit into a nice neat little box and I want things that work for me, not what works for other patients.
Hi Kelly, thanks for sharing your experiences. I sense the evil hand of insurance companies behind all this box-ticking.
I take your point about many diabetics not getting enough information on how to manage their condition. On the other hand though, the onus is on the patient to take control. There is so much information out there in the DOC that there is really no excuse not to go out there and arm oneself with all the knowledge tools one needs to get a handle on the condition. So unless you live in the middle of the desert without a computer, there is no excuse!
Besides, medical professionals can often get it wrong on diabetes management. I don’t think we have this ‘non-compliant’ issue in the UK as there isn’t an issue with insurance companies. But I know I wilfully ignore some of the things the nurses told me, like ‘you have to eat at least 130g of carb a day for your brain to function’…
Lila, I agree that there is a lot of information with the DOC, but not everyone has a computer. I have a neighbor that is T2 that is in her 60s. She knows very little about diabetes (she did not even know there were different types when I asked her what type she was). She has no desire to get a computer. Neither of my aunts had a computer. Although I had a computer, I was working 60-70 hours every week and my computer time was very limited. I did not have time to surf the net looking for stuff. The few times I did look, I did not land on any message boards or get any information that actually helped me.
The computer is just a tool - even if someone hasn’t got a computer, there are still things like public libraries. You hit the nail on the head about your neighbour who has ‘no desire’ to get a computer - the issue really, is whether an individual is motivated enough to go out and empower themselves.
As for time issues, going to the diabetes clinic is also time-consuming, so even if a patient was offered lots of training and advice from the clinic, they would still need to invest time in getting to the clinic, waiting around etc etc. I find it is actually most time-efficient to look online because everything is within my control rather than sitting in the clinic waiting room, waiting hours for them to call out your name.
And you are here now - I hope you have managed to find helpful information. For me personally, it’s made a world of difference. Without the DOC, I’d still be doing stupid things like changing my lancet each time giggle
Just read your post. AGREE!!! I have been labled that at times too. I also have gasteroparis but most of that labeling came from the hospital not my dr. I have had him now for 26 years and both of us know I give it my best but some of these "on call’ Drs… well…
If your A1c is less than 6.0 and the doctor tells you that you are noncompliant, then threaten to sue them for slander.
As long as your AC is under 6.0, then you ARE compliant.
Also, who says you HAVE to comply to the doctor? The doctor should comply with YOU. You’re paying the daggone bill.
The instant a doctor said I was noncompliant, I would wait a day, then come back and see what they wrote in my records. If there are any negative comments, then I would get a copy and see a lawyer.
If you are labeled noncompliant, many insurance companies can limit your coverage until you copitulate. And even drop you as too high of a risk.
Also, if you try to buy life insurance, and the company sees noncompliance, they may not sell it to you.
Gotta love them labels, huh…
Lila, my neighbor’s case is probably a hopeless one! Unless someone knows that they should be looking for TLAP or Using Insulin, they would need some luck stumbling upon that. When I was first diagnosed, it was pre-internet days & I ordered a ton of stuff from the ADA.
I first read about gastroparesis in the ADAs Diabetes Forecast magazine and it was presented as impossible to control BS. Prior to getting gastroparesis, my control was fairly good. I did have access to a diabetes clinic. There were limited endos where I lived. I only saw my doctor at regular appointments so I was not missing a lot of time from work to keep those appointments. I always made 8 AM appointments so I was his first patient in & could get to work without being too late.
I started getting online in 2007 and that has made a world of difference for me also. Unfortunately for me, it took being on disability to have the time to look for stuff.
Doris, I know what you mean about on-call doctors! They don’t have a clue. Yes, I know you give it your best!
LOL! Kelly they po me! I fuss for hours at them but as you know you get no where “they know all about medicen and you don’t” ERRRRRRRRRR!
Zolar, at the time, my A1c was running in the upper 6s to 8 so I wasn’t under 6.
When I was working, I always made sure I had a job with group insurance. I was turned down for insurance not too long after I was diagnosed. My doctor at the time did not understand why. I learned the hard way to ask insurance questions before accepting a job!
I don’t believe in suing people. Even threatening a doctor that you will sue them is not good. Doctors are leery of patients that are sue happy. I had a relationship with a good doctor destroyed because someone that I thought was a friend contacted him and told him I was going to sue another doctor. That was not true but he did not know that. If you want to destroy a relationship with a doctor, just use the word sue.
Doris, I probably spend more hours praying that a doctor rot in h*ll more than any other subject! So yeah, I know how much they PO you! I usually keep my mouth shut then come home & let it out. I also believe in karma and hope some day, they get theirs!
Eloquently stated. Thank you, Kelly.
Excellent idea about the non-compliant form. Remember the threats in school about items be added to our “permanet record?” This document would somehow magically follow us our entire lives, but we had no access to seeing what it was. That’s how I feel about the non-compliant label & it’s for real.
Sure my record is stamped. I am non-compliant about statins. I’m non-compliant in following ADA dietary nonsense. I argued with the CDE about the flawed ACCORD study & never went back to her.
Thanks Gerri! I remember those threats in school also. I am also noncompliant about the same things you are with statins & carbs. I have argued with a couple doctors about Accord! Our noncompliant scarlet letter will really follow us once everyone starts using electronic records.
We’re sisters! The NCD sisters.
I was very moved by this post. I’m so sorry that you were treated so poorly by these medical (ahem!) professionals (harumph!)
Some doctors need to walk in our shoes for a few months. Let’s see how “compliant” they’d be if, for example, they had to write down the date, time and exact quantity of every morsel of food that goes into their mouths for 90 days AND take a “sugar pill” three times a day at precise times and log that, too.
Then let’s put them on a lie detector test and ask them some simple questions: “Did you ever neglect to write down your food intake exactly as instructed? Did you ever guesstimate your food intake? Did you ever neglect to take your pill? Did you ever take your pill early or late, even by 15 minutes or less, to accommodate your schedule? Did you ever “fudge” your records?”
We’d find out pretty darn quick how “compliant” they are, eh? We’re human. Being human means we’re going to make mistakes, going to face challenges we don’t know how to hurdle, going to forget something or misunderstand something, going to get tired and frustrated about repetitive tasks, going to need to work on getting better at something new or complicated or both.
Jean, you are so right. I don’t think some of these doctors could handle what we do for a day let alone 90 days. I especially love what you put at the end – jerks. I usually call them idiots but I like jerks better.
I was told by a doctor that I was noncompliant. I proved the dead wrong. Today’s A1C was 5.1
My last 5 A1C’s were 5.7, 5.8, 5.3, 5.2, 5.1
Now, how is that noncompliant? Just because I treat my disease MY way doesn’t mean I am noncompliant, does it?