Noncompliant: The Evil Word!

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 noncompliant 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.
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