Non-compliance vs. diabetes self care: Are we still playing a blame game?

Jane Jeffrie Seley, MPH, MSN, GNP, CDE

| Jun 19, 2009

In 1993, I published an article entitled "Is non-compliance a dirty word?" in The Diabetes Educator in which I expressed my sadness that people with diabetes were actually getting blamed by their health care providers for not following treatment advice (1). I suggested that the patient's failure might really be a failure in the partnership (or lack thereof) between patient and provider.  Fifteen years ago, I challenged diabetes educators to work together with medical practitioners to change noncompliance from a dirty word to a rare occurrence. So how are we doing today?

From non-compliance to self-care

The diabetes lingo has gone from "non-compliance" to "non-adherence" to the inability to perform self-care, all to describe whether or not a patient with diabetes is following their prescribed regimen. No matter what we call it, the outcome is the same. The patient is not doing what we told them to do. The result can be the onset and progression of the complications of diabetes that we all know and dread. The consequences all belong to the patient, not us. My question to my fellow diabetes educators is: Whose regimen is it anyway? Are we taking the time to ask the patient how they choose to manage their diabetes? What are their goals? Have we presented both the benefits and the costs (time, money and energy) of the treatment we are recommending? Does the patient know how to follow their regimen safely and comfortably? Until we do this, the patient is not ready to be independent and perform self-care.

Frank's story

Several years ago I was asked to see a new patient as a favor to a former colleague. She was in tears describing how her husband was not taking care of his type 2 diabetes and she feared he would develop serious complications or worse. Frank's wife and Frank's primary care physician had both labeled Frank as "non-compliant" and blamed him for his poor glycemic control with an A1c of 8.8%. On the first visit, I asked Frank to bring in all of his medications so that I could review them with him. I was sad to learn that he was taking sub-therapeutic doses of three oral agents, and had stopped taking exenatide because it "didn't do a thing." When I questioned him further, I learned that Frank had been taking the exenatide at the starting (non-therapeutic) dose, at the wrong time (post meals), and in the wrong place (injecting in his forearm). He had received instructions from an office "nurse" who very likely was not a nurse at all. Frank stopped monitoring his blood glucose because the numbers had never improved despite intensifying therapy.

Lessons learned

I imagine by now that your heart is racing. So is mine. As you read Frank's story, you are probably filled with anger at Frank's physician for not properly managing Frank's diabetes. To make this story even more heart wrenching, let me add that Frank is in his early forties, has young children, and a blue collar job that requires physical labor. He needs to be healthy to support his family. Over time, I worked closely with Frank to develop a partnership with him through which he learned how to manage his diabetes through lifestyle changes and optimal pharmacological interventions. I am happy to say that Frank keeps in touch to let me know how he is doing. He is filled with pride that his hard work is finally paying off.

So, why am I telling you all this? It's because we are all taking care of many "Franks". These patients are getting sub-standard treatment because they've been labeled "non-compliant".

How can we turn this around? I have made it my personal mission to react whenever the term "non-compliant" or "non-adherent" is used to describe a patient referred to me. I take the time to explain that indeed there has been a breakdown in the partnership between patient and provider that has led to this point that the patient is not capable of safely and comfortably performing self-care. I share with the provider the secret to my successes and help them to do better, one intervention at a time. I hope that you will take the time to do the same.

References

1) Seley, JJ (1993). Is non-compliance a dirty word? The Diabetes Educator; 19; 386-391

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Categories: A1c Test, Blood Glucose, Community, Complications & Care, Diabetes, Diabetes, Health Care, Living with Diabetes, Monitoring, Type 2 Issues


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Comments

Posted by Anonymous on 20 June 2009

The most important time when the rubber hits the road is when someone is using spolied insulin. It takes the doctors way too long to recognize what then problem is, instead as you say blaming the patient first for non-compliance.

Posted by MelissaBL on 22 June 2009

After transitioning from a pediatric endo to one I saw as an adult, I was shocked to be saddled with the label "non-compliant." Turns out, my information was bad. I didn't understand that my A1c was a problem or that my treatment and diet regimens were less than exemplary because what had been acceptable for one doctor was not acceptable for the next. It was a shock to the system and I responded by neglecting my self care because I felt my efforts weren't enough to produce the results my new endo wanted. It was five years before I switched to an endo and CDE who could more clearly define HOW I would reach my goals. The doctor/patient relationship and the medical team's understanding of diabetes care and technology have EVERYTHING to do with patient compliance and success.

Posted by Anonymous on 28 June 2009

Many of the patients I see...have no Blood Sugar Goals....don't understand CHO Counting...or what carbohydrates are....and since they only feel tired...think all is well even with an A1c of 10. Unfortunately the MD's they go to understand as little about Diabetes as some of their patients...with so many Diabetics appearing in the Hospital....getting them to go to Out Patient Classes is a must....so they will understand their Chronic Disease...how they are to take their meds...what their Blood Sugar Goals should be...why they are testing their Blood Sugars....some patients test their Blood Sugars 6 X a day...but have no understanding of what the numbers mean.....to see the light go on once we start them on the Path of Knowledge is a wonderful feeling....and it helps them to know that I as a Nurse and Diabetes Educator am like them and have been working and learning about my Disease too for 36 years.

Posted by eshahady on 28 June 2009

Excellent points about blaming the patient and great suggestions about helping the patient define their own goals use those goals to guide your treatment. But Seley goes on the blame the physician and his/her nurse/medical assistant. Would if not be more effective to communicate with the physician and the assistant about the issue so they might not repeat it in the future. I often hear the same story from CDEs. This blaming of the physician does not encourage us to involve CDEs in the care of our patients. Partners do not "bad mouth" each other.

Ed Shahady MD Director Diabetes Master Clinician Program Florida Academy of Family Physicians

Posted by Anonymous on 28 June 2009

Compliance of the patient is crucial, very true, but the doctor owns responsibility to manage the patient when they are "following the rules" and still experiences problems. k together with the patient to guide them to solutions. We must work as a team. Self management is what, too often, patients try to handle when communication breaks down. The disease is daily tweeked by the patient but overall insight and successful solutions are the Endocrinologist's responsibilities.

Posted by Feinman on 28 June 2009

This is the backbone of the argument against low carbohydrate diets. My students ask me what the ADA says when confronted with the data showing the benefit of such diets and in the end, they say that nobody can stay on them. Of course, they imply that it is in the nature of the diet that it is hard to stay on, but, of course they mean that the patient is at fault.

Posted by Anonymous on 28 June 2009

like 'spoiled insulin' mentioned before, what appears to be non compliance from hbA1c results can be the problem of 'bubbles' in tubing of insulin pump which is not raised in training from reps/medics?!

Posted by Anonymous on 28 June 2009

I have had diabetes for 15 years and for the first 5 years I was considered noncompliant. My Ac1 never got better than 8.8. Finally when the oral medication I was taking was recalled I was able to see an endocronologist. Surprise Surprise after some expensive testing it was discovered I was a type 1 not type 2. If I had not been stubborn heavens knows what would have happened. I still think back to all of those medical personal who basically told me I was lying when I showed them my food and exercise log. I think most of the problem comes from not listening to the patient but instead giving them your idea of what they should do.

Posted by Anonymous on 28 June 2009

As a victim of "blaming the patient" I am glad to hear you talk more about a more effective partnership. However there is still a tone of the medical culture of condesension in that patients are still viewed as "needing to be told what to do". Adult patients do need adequate instruction done in a way that treats us as adults, not errant children. Medicine is praternalistic, dogmatic and pedantic. Until healthcare providers learn how to teach and interact with adults we will still find that adult patients do not learn and take personal responsibility for self care.

For effective adult learning to take place the methods used to educate patients about diabetes self "management" not "care" must be based on a culture of mutual respect, clear adult-to-adult communication, careful listening on the part of the caregiver to make certain that the self management skills are consistent with the goals/values/lifestyle of the person with diabetes.

There is no such thing as a "non conpliant" or "non adherent" patient, only a patient that did not make informed decisions to participate in a proposed method of diabetes management. Rather than say to the instructor (not care giver) I don't think that this method will work well in my lifestyle, what else can we do, the patient will simply leave and implement their own solution whether it works or not. The concept of "compliance" assumes that someone in authority is giving orders that must be obeyed. While this is often the mindset of doctors, nurses and sometimes diabetes educators, its not the way life works. When the patient is recognized as being in charge and is educated/informed/treated with that respectful understanding then self management of dibetes will improve.

Posted by Anonymous on 28 June 2009

What an interesting article. An issue that I have thought about for many years. I am a Type I diabetic for 52 years and I have a few thoughts to share about doctor/patient relationships.

I have always felt that between 1957 (when I was diagnosed) and the '80s that, generally speaking, no one really knew HOW to help me other than keeping me as relatively healthy as possible. The diabetic end of the treatment was still "up for grabs" as to what to do!

Today we see vast improvement in care but there is still a long road ahead to understand individual diabetes health care for the medical professionals, the patients, their family and friends.

The point being lack of proper education for both medical professionals and the patients! It seems to me that there are too many times when the basics of control are not explained to patients and/or the patient is in such shock hearing that they have diabetes, that what is said to them is lost and needs repeating a few more times; perhaps better still to be written down as a guideline for the patient to read a few times and digest the message at home.

Questions that I hear or read about every day: What does an A1c really do? How many times should I test my blood glucose level? What is too high or too low for a diabetic's blood glucose level? What is the best breakfast for diabetics? Can I take both my basal and bolus injections at the same time? How many carbohydrates should I have per meal? Is it OK to have more carbs or less carbs at times? Can I enjoy alcohol again? How can I loose weight? Is 150 carbs a day best for me as I am only 5' 4" and 104 lbs? What method of exercise should I use? My hair is falling out! Why? My nails are brittle - why? My insurance will not pay for the amount of test strips I am told that I need? Is testing four times a day adequate? Why does my test results go up when the same meals, and method of control are repeated day after day? How do I handle this?

The above are basic questions that no person with diabetes should have to ask over and over again, should they? But they do!

There seems to be a constant change living with diabetes and how to handle the changes are crucial for average to good control in my view. There should be time for doctor and patient to discuss what issues need to be adjusted for better control. Why isn’t there more time?

There is no blame to pass around because diabetes has and does seem to continue to morph for each individual as the months and years go by. For everyone? Probably not, and therein lies the difficulty of knowing what to do for each and every diabetic in the world. Minute daily change and guidance can/may be a part of the secret for good control.

Who IS the Expert on diabetes, anyway?

Together We Can and Will Make a Difference!

Posted by Anonymous on 28 June 2009

Great article! My physician & I can't seem to mesh together. He thinks I'm not trying to control my diabetes, w/o regard to my living issues, loss of work, caring for a disabled child ect...I feel I am just a number game, & not a person with presses that at times are overwhelming. Thanks for letting me vent! ss

Posted by Anonymous on 28 June 2009

Being labeled as non-compliant or unable to perform self-care by a physician, nurse or CDE should be a rare occurrence but seems to be used when the patient's labwork or complaints do not reflect positively on the health care staff. The major assumption is that the treatment plan is correct for the patient's way of living which includes daily routine, financial considerations, religion and cultural aspects and emotional status. I agree that this is happening far too often and it is time for all members of the health care team and the patient to decide what are achievable and acceptable goals for the patient at that particular time.

Diabetic RN, MPH

Posted by Better Cell on 28 June 2009

You could only "turn this around" Jane Seley if most physicians(Endocrinologists) are able to lose their arrogance and replace it with humility and an opened-mind. Unfortunately in treating a Disease such as type 1 Diabetes and type 2 Diabetes, most physicians get "burnt out" within their profession because "success stories" seldom outweigh tragedies. For a Disease that is thousands of years old, very few accomplishments have been made besides Insulin. that is discouraging to the physician and patient alike. there also should be made Clinical Immunologists available to treat T1DM since it is an auto-immune Disease rather than a Metabolic one. Like in any given surgery, the right tools are needed for the specific procedure at hand!

Posted by Jerry1423 on 28 June 2009

I have been type 1 for 34 years and have been very lucky to have great doctors to help me during most of those years. When I hear about diabetics that just cannot find their "groove" become fragile I tend to blame that on their doctor rather than the patient (with exceptions).
I agree with Better Cell's posting: " ... very few accomplishments have been made besides Insulin." I feel strongly that there are things out there that can benefits diabetics, but are being held back. One of those things is the utilization of a laser for glucose testing instead of those damn (expensive) test stripes. I would feel much more comfortable if we were given the choice of using animal based insulins again instead of these damn (expensive) synthetic "insulins" ... I liked it better back then.

Posted by duckybird on 29 June 2009

Being "officially" diagnosed 3 years ago, I have now joined the ranks of those who are fat, non-compliant, and don't seem to care or understand possible complications. I can fast for 24 hours or eat a chocolate cake and my blood sugar stays about the same. My primary care doctor says my body is making enough insulin, so I need to exercise. I do not disagree, but sometimes my mulitple sclerosis just won't let me walk enough and I get frustrated. Also, the heat is a nightmare making me physically sick. I love to walk when it is not too hot, and it helps my blood sugar a little, not much, but it is a help. I don't explain this very often, as it is not important to those who ask, I do have a seriously ill husband who I am sole caregiver and I must work full time for insurance. It is okay and I can do a lot, but I'm so tired of the "just fat and lazy" label. I'm glad there are clinicians out there who do help their patients, someday I may find one. You all are great.

Posted by angivan on 29 June 2009

I am a perfect example of how labels are worthless and counter-productive. People learn in different ways. I was never told the right things to do because I was young and labeled "non-compliant". My endo didn't even explain what A1C numbers meant. I finally switched to an endo who took me aside and gently but directly explained how poor my self-care was, and he was shocked at how ignorant I was, but also how willing I was to learn if it were just explained to me. I now have an average A1C of 6.5 and have been happily pumping for 6 years.

On the topic of people learning differently...I was having dinner the other night with a friend and she noticed me counting carbs and figuring my bolus. She shook her head and said, "What do people do if they have Type 1 and they're not smart like you?" I admit I hadn't thought much about it, but most people are not as comfortable with math as I am, so I don't know how they figure out boluses, basal patterns, ratios, correction factors, etc. These calculations come naturally to medical staff, but sometimes "cheat sheets" are helpful for people who aren't comfortable with crunching numbers.

Posted by jimmysdevoted on 29 June 2009

I live in astate where there is no insurance for those over 21. No medicaid. And what is said is teh majority of people who need the self managment will never get it.
That was why I began POinte Diabetes Centers Mobile Unit.
It is not always non complicance by choice. Often wth no insurance strips are unaffordable, and with no insurance no doctords will see you unless you can come up with a fortune for office visists. free clincis are overwhelemed and short on services. And many Nurse practitoners here mess up more than they help.
getting into comlicance is not always simple. Many cant afford their medcations and are left to flounder. so while you in suburbia and rich states may see purposeful boohoo is me attitudes for non complicane, theer is a large poopulation that are literally forced into non compliance left to be a diebetes statistic.
On another note, there also seems ot be a drastic differentiation in slef managment information. Locally ven thogh they are CDEs, many nurses just tell peopel who are in lcasses stay away from bread and sugar. Many encourage alternative help like peroxidie injections as a cure. One thing is that you have to have a stable set fo rules and inforamtion that poeple can count on. Many leave self managment and fallw ay because of conatrdicting information.
I wou llek to close by saying, I am and NDEP and CAM provider. I maintain betwenn 20 and 40 hours a year worth of CMES on diabetes and its care.
I ahve held imromptyu classes at local county fairs, supermarkets, drug stores. Just to get reliable safe and stable information out there.
I offer my services in a host of ways and maintain contact with everyone, never leaving them to flounder and to step in in case of need. Doctors locally dont like that.But I do it anyway.

DR. Julia Sherman DN,rPhT,AHMA,DE, IFA

Posted by Steve M on 29 June 2009

Non-compliant is a term which I as a type 1 diabetes sufferer have tried to do something about. Two years ago I designed a product which helped you remember to take your insulin and tablet dose. (this being one reason for non-compliance). This product also is a sharpes container as well as being safe to place the needle on the pen. I am still trying to get it on to the market. Things can be so difficult at times! If anyone could help me in my quest I would feel that I have contributed to the helping of people with diabetes. Regards Steve M

Posted by Anonymous on 29 June 2009

How can patients be compliant when doctors do not agree on how to treat type 2 patients. My sister and I live nearby each other but go to a different hospital/medical clinic. We were both diagnosed with type 2 in the same year. We were both given very different instructions on how to moniter our blood sugars from our doctors. My doctor tests my A1C every 4 months, hers once a year. She only tests once in the day when first waking up, I test all the time to figure out which foods cause my sugar to rise. Her doctor told her that low carb diets are not healthy. My doctor says to only eat veggies and fruit carbs. Both of us have A1C's around 6.8 and cannot tolerate any of the meds. We have had some serious disagreements about who is getting the better medical care. It is a topic we can no longer talk about which is a shame.

Posted by Anonymous on 29 June 2009

As someone who has been writing in this area since the late 1980s, part of the issue is the difficulty in making the paradigm shift. We are still teaching health professionals that it is there job to develop a treatment plan and then teach them how to use it rather than recognizing that it is the patients plan and educators and physicians are here as resources, facilitators and cheerleaders.

Posted by Anonymous on 30 June 2009

Many, many good points here. I am a Type 1 for 32 years. One issue I would emphasize is that there is disagreement among providers over the something as simple as carbohydrates in the diet. Should the diet be low-fat or low carb? While I follow a low-carb diet (and have a 6.0 or 6.2 AIC) some providers might look at the fat in my diet an say I am "non-compliant." (my LDL is less than 70 and my HDL over 40). So, I get scolded by the dietician about eating eggs and cheese, but commended by the endocrinologist for the AIC. "Non-compliance" also depends upon who you are listening to.


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