Compliance versus Compassion
If you’ve been around diabetes for a while, you’ve surely heard the term “non-compliant.” This is the label that doctors, nurses and other health professionals have used for years to describe patients who don’t follow orders: don’t take medications as directed, don’t stick to meal plans, or generally fail to implement the prescribed treatment regimen.
You and I both know there are lots of reasons why diabetes patients don’t always do exactly what we’re told. And most of them have nothing to do with being just plain lazy or stubborn, as the term “non-compliant” implies. This term not only places a heap of blame and guilt on the patient, but it also reinforces a patronizing doctor-patient relationship; they give us commands, and we should obey.
I’m happy to report there’s been quite a backlash in recent years against this terminology, and the mentality that goes with it.
I’ve been to numerous health conferences in the past months, and one after another, experts — including MDs, health plan executives, and health policymakers — take the stage and talk about “understanding patients’ values” and “working with patients as partners.” Just buzzwords? Hopefully not. At least talking about it is a good start.
Christi Dining Zuber, an innovation expert at Kaiser Permanente, put it this way: “The traditional notion of a doctor’s role was: ‘you tell people to do stuff, you push them to do it, and then you track it.’ That’s just not working anymore.”
Funny that when large numbers of people failed to perform the “stuff,” no one seems to have thought about critiquing the methods. But again, that appears to be changing.
Conversation Matters
The medical establishment seems to be finally recognizing that we “patients” are people just like them. We have children, and high-pressure jobs, and financial woes, and family stresses, and food hang-ups, and God-only-knows-what-else to deal with in our lives. So don’t just hand me a print-out of a meal plan and expect me to go home and follow it to a T. What if it turns out that I work in a bistro and I’m around rich foods all day? Maybe this meal plan is a complete mismatch for my lifestyle… Did you ask about my lifestyle?
And there’s more to it than that. It’s the way that a doctor or nurse or CDE treats me. First, do they view me as an equal? Second, I need to believe that their concern is genuine.
“Health care is humans giving care to other human beings. It has to be about compassion, an appeal to the heart,” says Kaiser’s Zuber. What a wonderful concept – one that seems to get lost in all the process around health care these days.
Another expert, a researcher and designer named Maggie Breslin at the famous Mayo Clinic in Rochester, MN, spent years studying every imaginable sort of patient interaction at the million-square-foot clinic. What do you think her conclusion was about what good healthcare looks like?
The answer: A satisfying conversation!
“Conversation is how people determine quality and value,” she says. “People love the Mayo Clinic not because of all their state-of-the-art treatments and procedures, but because doctors take the time to talk and answer all patients’ questions.”
A good conversation is the essence of human compassion, I’d say – and oftentimes what we need most from the person helping us manage our diabetes.
A Compliant Doctor?
Finally, veteran diabetes writer David Mendosa reminds us that medical professionals not only need to work better WITH us, but they actually work FOR us. “We hire our doctors. We can fire them too,” he writes. So why not shop around for a “compliant” doctor?
“A compliant doctor is one who not only talks at his patients but who also listens to them. Nowadays, many doctors are too busy processing insurance paperwork to spend much time listening to us… It's our body, and we are responsible for it. One of the ways in which diabetes differs from other diseases is that between rare visits to our doctor's office, we are in control. We have the right to set our own goals and decide how we will manage our diabetes because we have to live with the consequences,” Mendosa says.
Too true. We can be angry with our doctors. Or we certainly have the right to switch doctors if we’re unhappy. Either way, I think we’d ALL be better off if we dropped the “compliant” term altogether and focused on injecting more compassion into the mix.
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20 replies
WOW!!! When I read the article, I thought it was kiind of harsh and hard on the doctors. But after reading most of the comments, I see why. I did not know that so many people were so lost on this issue. I know how hard it is when you are doing all you can and your sugars stay high and cause complications. That happened when I was changing to insulin injections, and my doctor was being too conservative. I have been blessed with a great general doctor who diagnosed and treated me for 16 years, and we kept it under control. Then I started having really bad lows at odd times, and he decided I should change to insulin for better control. He had already referred me to an indocronologist, and a nephrologist (kidney doctor) so all three were being kept informed of my progress in all areas. They work with each other, and call each other if they aren't quite sure why a test result would have been that way. I feel very sorry for all of those who have uncaring doctors. Keep changing until you find one who will work with you and help you keep your numbers down. However, one of my doctors wrote non compliant so that my insurance would pay for certain medicatons. Because without that, insurance would not pay. I needed the medication, but insurance said I did not. So, we made me look bad, and I did not mind at all. But you DO have to follow your doctors orders and keep up with what you eat. And EDUCATE YOURSELF as much as possible. If it is a family member with diabetes, educate yoursself too. God Bless to All of You. Liquorish
For me, I tell my doctors what I want and they either comply with my requests, explain to my satisfaction as to why they can't comply with my requests, or I find a different doctor who will. I tell all doctors this.
It's my health, my life, not theirs. All the doctors want is my money anyway. If they didn't, my medical care would be a LOT cheaper.
I label doctors who do not do what I want as 'Non-compliant'.
I also tell them that if they don't want to give me the treatment that I prefer, I can buy any 'treatment' from either the internet or my local …ummm… pharmacist.
I give them a choice - either we do it under medical supervision or I do it without. Either way, I will do it.
I even went so far as to buy my own insulin and syringes.
I now know about how much to inject, and when it's necessary, long before they do.
I asked my endo one question the other day when I called for insulin and an appointment.
My question was: Why do people keep band-aids in their house?
They laughed and said "I don't know, why?".
I replied that people have them just in case and that's why I wanted insulin - just in case. I only need it when blood sugars are above 200, which is infrequent.
Now, my endo will prescribe insulin and instruct me on the information I need. They are calling it 'adjustment medication'.
I don't play around with medical hassles like milking me for money with a test here, a test there, all the while waiting for medication for this disease.
About diet - I do not eat veggies, and do not plan to.
My dietitian has difficulty with this.
So, I eat my usual diet, less all the bad foods, and got my numbers nearly perfect (till the weather got hot).
I can get any one number anywhere I want it, without medication.
This too puzzles them.
I take the bull by the horns and self treat instead of relying on them for treatment.
If they don't like it, then I will take my business (and money) elsewhere.
For those who have trouble with blood sugars, google Dr Bernstein and eat an all meat diet for a month or two, or until you are satisfied that YOU have blood sugars under control.
Note: go to bloodsugar101 and you can learn more about blood sugars.
I was called at home after tests, at 5pm on a Friday and told "You have diabetes, where do you want me to call you in something to try?" and "If you have questions I will be back in the office on Monday". I had to beg for info. I changed to another doctor, and I have had difficulty getting info there too. Everything I have learned has been by my own research, and help thru sources like this web site. Thank you for the article. I will keep looking for someone that will work with me, instead of against me.
There has got to be a better system, My mom has diabetes with a host of other problems, kidney, artery disease & the frustrating part is each doctor has a different opinion & each doctor changes medications & thoes medications have reactions to others. It is frustrating.
I have chronic pain & see a few specialists looking for answers & then my diabetes showed up. I went t my PCP & he said, you have so many specialists I'm out of the loop.
There are too many referrals today, no one or 2 doctors who are in charge of someones care. So my problem is the doctors, no one takes charge, no one steps on others toes or communicate to get the best treatment for their patient.
This has been my experience the last 4 years, maybe I'm doing something wrong.
diane
will try to find the right endocrinologist for me. my family doctor has just been adding more and more medication with no improvement.
5 stars!!!!!
EXACTLY11111 i coudnt have said it better… yes this is sooo true.. my daughter for a yr was labled none compliant and after trying to please and failing then instead of trying to fix it logically they again labled her ect???? why.. if we are chidren and know what we are told to do? then why not do it?? well thats the clincher allways being told nag nag nag… i see it in her eyes the desperation to please and one or two failings ?? well there bck with this again… wish i can find a mayo some were??/… lost with a lable ..kristyns way
I thank you for this article. I have type 2 diabetes and it is out of control right now. My dr. is insisting I am doing things wrong. In the last 3 months I have lost 25 lbs and excercise daily. I have been eating right and my sugar is still out of control. I also have lymphedema in my arm. There are alot of stressors in my life right now. I am now stressed about my sugars!
Amy-We'll put. And I think I made this 4 pages of comments now. I think you have really hit the nail on the head. Thank you for bringing this very real, very serious problem to light.
I've been complaining about this for years!!! Last year, I was beginning to see the changes when I attended the Taking Control of Your Diabetes Fair. One of the smaller workshop topics was about the patients complaints versus the medical professions complaints! It was enlightening to say the least!!! This year I found out about TuDiabetes.com and the Behavioral Diabetes Institute (They say they are the first of its kind to deal with the psychological aspects related to diabetes and are located in San Diego).
Both sides need to be heard and listened to. Both sides DO need to work as partners, with the understanding that ultimately it is the patient who must make the final decisions since we live with our disease. I know because I have been a Type One Diabetic for 39 years now and I was born multi-handicapped for which I have dealt with many doctors, nurses, and hospitals, etc.
Words DO make a difference and if those words are condescending, then the damage can and will be done, but rectification is always a healthier way to continue… AND I hope we do…
Thank you for this wonderful article!
Rebecca Rodick
That was very inlightning and I too have felt that way. I have quit smoking and now have a little over a year behind me but gained 35 pounds so my every thing is off the charts what is worse the smoking or the sugar + weight + cholesterol; however, that is what I was told, thought I was doing a good thing!
I am a Type 1 dia. After my Whipple surgery in 2007 I found life to be just a little different. One thing that I can't find is a Type 1 group to meet with unless I drive for 1-1/2 hours one way to make the meeting. Is there a page in the computer where I can go?
I live in a city of 50k and there is only one type 2 class or meeting group.
Thanks
Chuck
How sad I just went for a follow up visit for my A1c. The doctor didn't even mention that but I went over all my bs readings and told her they were good. I had lost some lbs. and then did I need any perscription refills…changed one medication not related to my diabetes and I am to go back in 6 weeks to see how my meds are doing…she will get a phone call if my meds are doing ok and if not I will go in. Otherwise I am going elsewhere for my next A1c. She doesn't have a clue about my diabetes and what I go through every day to stay healthy
There are many qualities an individual may use in selecting a doctor. Recently, my daughter-in-law called me and asked me to call my friend who is a doctor she wanted to have. However, this doctor wasn't taking any more patients. She said she doesn't take any doctor and only look for the best.Well, I called her
snd she took my daughter-in-law immediately. My daughter-in-law was ecstatic. This doctor has compassion, humor, and is thorough in her practice.
In my opinion, compassion supercedes all other qualities.
This was a great article. I have felt this way numerous times and when you see more than 1 doctor it makes it more difficult.
I cannot agree more to the contents!
A health care professional works for the client, not the other way around.
Blame for any issue can be passed on however, lack of personal attenetion does not make the fault anyone elses. I have daily problems with being a type 1 dia. I realize that it is my issue and I need to overcome all issues myself.
wonderful article!! Really, it comes down to metabolism —and that is what diabetes is all about!! Every individual is different from the next; what works well for one person, may not work for the next person!! We know our own bodies better than a Dr. does, because "we live in our own skin, and they don't"!!
This article is so true. I have a doctor that went from taking time to listen to rushing through my visits. He does not seem to understand chronic pain, which I have. And when it comes to my diabetes, which the pain sometimes makes my blood sugars elevate, he always says there is no reason other than diet or not taking insulin that my sugars would be high. I have lost 33 pounds since discovering that I am a diabetic and I finally confronted him about that fact and told him I did not lose that much weight eating sugars all the time. I told him that he was going to have to trust me and he finally said "I trust you" and "maybe your pain could be the cause." I have other doctors who have shown compassion and stated that they think I am a type 1A rather than a type 2 diabetic since my blood sugars were high for decades before a doctor finally diagnosed me and due to the fact I have diabetic kideny disease only five years after the diagnosis. I take insulin shots twice a day and Actos once a day and have for the past almost three years. Doctors who have shown compassion say that I trust you are doing what you need to do and that sometimes diabetes reaches a stage it is just difficult to control. The doctor that tries to shame me just makes me defense and that works against what our common goal should be.
Bravo, do I relate to this article ! I have had Doctors who have made me feel like a naughty, defiant child. Thats a right I reserve only for my Parents and since I'm 51 years old not even them for quite some time. Having been diagnosed only 18 months ago, its been a struggle trying to change things I've done all my life. There is so much to learn about Diabetes and juggling all the medications I'm on is not easy. Is it so hard to understand that this along with the pressures and stress of everyday life can be a bit overwhelming. I'm doing the best I can. Where is their compassion for the patient? I am the one with this illness after all !