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The Art of Compliance.

Is the word “compliance” frightfully out-dated? Or misunderstood? This month, “compliance” is the word under investigation over at diaTribe, with some crowd-sourced input from fellow people with diabetes, stemming from the Facebook question, “As people with diabetes, how does the word ‘compliance’ strike you? (Positively? Negatively? Apathetically?)”

“As with everything related to diabetes, your mileage may vary, and the concept of “compliance” is no exception. For me, it can feel like the end-all, be-all assessment of my diabetes, like an A1c result. But even if the word itself stirs up some negative feelings, it does serve to remind me that the to-do list of diabetes is never fully checked-off, and while there are plenty of reasons to feel good about my efforts, there is always something I can do to improve. The quest towards “better” remains constant, and I have to remind myself that a label doesn’t matter as much as my actions, and their outcomes.”

Check out the full article over at diaTribe, and if you want to weigh in with your opinion, I’d love to hear it.


14 Comments Post a comment
  1. “Compliance” as a descriptor for my diabetes is right up there with “uncontrolled.” I once saw that my endo had stated on my chart that I was a “compliant and uncontrolled type 1 diabetic.” I was like, “what the heck?” and asked him what he meant. He said, he thought I was doing a fabulous job, my A1C was good, but in order to be able to run the bloodwork and tests he wanted to run to keep me in check every 3 months, he had to put “uncontrolled” down on the paperwork for insurance purposes. Just sad that we have to use such (sometimes harsh-sounding) labels in order to get appropriate proactive care.

    04/3/14; 10:42 am
  2. Personally compliance, or rather non-compliance rates only slightly above certain vulgar swear words as a word that I dislike. If a type 2 decides that checking his fasting glucose is pointless, it doesn’t mean he has give up. It means that someone needs to tell him the point of doing it. I personally have been labeled a non-compliant patient because three cardiologist have vetoed a class of medications and a neurologist wants me to take one of them. Therefore to the neurologist I am non-compliant. To me, he joined the list of not my doctor. But what makes the word so abhorrant to me is that you can be 99% dead on with doing what you are asked, but that one evening where you decided it was worth it to do what you wanted to do makes you non-compliant. That one morning you walked out of your house forgetting to take your medication makes you non-compliant. That word demands that I be perfect, and that isn’t going to happen.

    04/3/14; 10:47 am
  3. For me, the word “compliance” is too general of a term because it doesn’t take into consideration that we as PWD are all different. Compliance usually means that a patient has followed a predetermined and uniform definition of how a good little diabetic should control their diabetes: “You did it the way we instructed you, therefore you get a compliance gold sticker to wear!” IMO it’s much more realistic to determine individual goals with the understanding that there will be times when one is going to come up short. Establishing guidelines that are too rigid can lead to someone not being honest with their healthcare provider because they do not want to be labeled a failure. There are no doubt many people with diabetes who are guilty of putting the “lie” in compliance.

    04/3/14; 3:18 pm
  4. I dislike the word immensely. I feel that it implies obedience – like a dog doing what it is told to do. And non-compliance implies misbehaviour.

    I feel that non-compliance is used to describe someone who is not doing what someone else thinks they should be doing. I might not wait 15 minutes after bolusing before I eat. I might not test 10-15 times per day and I might not download my results every week and look for trends. In those and in many other ways, I am non-compliant. I would argue that I am doing what works for me and it works well.

    To write non-complaint in someone’s file is extremely judgemental and does nothing other than paint a negative picture for anyone else who reads it. Uh oh, I’m meeting with this patient next and it says in their file that they are non-compliant. Better prepare myself for battle.

    I’d say toss that word (as well as the word ‘controlled’) out with the trash and focus on supporting each person based on their needs and personal health goals.

    04/3/14; 4:59 pm
  5. Had previously commented on the source Facebook poll, that it didn’t bother me at all. Didn’t and still doesn’t. But reading this article, and especially the quote from Scott Estrin, must wonder if it’s an entirely flawed term (“Compliance means following the prescribed order, to the letter. […] Diabetes is about figuring out what the prescribed order is, given the present situation.”) I would agree there is an implication in “compliant” that there is a right course of action, but Scott points out that there is a right course of action both for care and life, and there’s an implication there that the two may well be at odds with one another. An interesting point, and one I’d not previously considered.

    04/3/14; 5:43 pm
    • Excellent point, Brian.

      For the record, I had the quote from you in the original article but it was edited out for length, I’m assuming. 🙁

      04/3/14; 6:15 pm
  6. When I first hear compliant, I think of my sleep apnea (this was discovered before my T1 diabetes) and using my CPAP. My doctor said I was one of the most compliant patients he’d had. On one level, it’s easy to define. I used my machine as instructed pretty much every day. Another example, I have an antibiotic to take and I take it as instructed – OK, no problem w/ “complaint and non-compliant” that way. The gray area is diabetes has to be adjusted every day!! And those changes are often made without a doctor’s assistance and b/c every diabetic is different there’s no “set” plan of action (such as the antibiotic: you’re an adult or a child weighing between 40-60 pounds).

    I liked what the RN said that sometimes a “medical team” needs to talk to the patient and figure out what the road blocks are (paraphrase), that the patient may have a good reason.

    I have a neutral position (right now) on compliant/non-compliant because I’ve either felt good about it or didn’t care (my first endo diagnosed me as T2 and wouldn’t start me on insulin so probably considered me non-compliant in some way). But I do think that it’s a phrase that’s taken on negative connotations and was probably originally meant only as a “medical” term that has now been leaked into public use so the medical field should choose something else to use. 🙂

    04/3/14; 10:22 pm
  7. DennisD #

    In my experience, “Compliance” is knowing, understanding and living [acting] according to a set of sets of rules established by some authority; yes, I was “Director of Compliance” for a large international corporation. For me, living a full and complete life with diabetes has meant that I understand how MY body works and what it needs and then utilize available tools [medicines and technologies] and knowledge of [other] experienced persons to set my goals and guidelines. I have not always followed the established rules often written by non-PWD.

    In retrospect, by not following “compliance”, I have far exceeded the “best possible scenario” set for me in 1957 if possibly doubling my age if I followed many very restrictive rules of life. I enjoy being a free-thinker and working with others [as a guinea pig on diabetes ideas] to make life with diabetes enjoyable for others.

    04/3/14; 11:09 pm
  8. Emily H #

    As a junior doctor working in hospital medicine in the UK in 2003 – 2006 (now retired due to ill health – chronic lung disease, steroid induced diabetes) there was a brief fashion at one point to try to get us to use the phrase ‘concordance’ – as in, agreement between the doctors’ and the patient’s thoughts about how to manage their illness – rather than the more negative and stigmatizing ‘compliance’, which conveys a fairly paternalistic view of medical treatment, with the all-seeing, all-knowing great, powerful doctor prescribing in stone the ‘right’ treatment, and the good little patient meekly obeying without questioning. I don’t think the user of the word ‘concordance’ ever really caught on – at least, when I am in hospital as a patient I never hear the word, and I do hear ‘compliance’ mentioned occasionally – but I do think there has been a _slight_ shift in attitudes in the junior doctors (due presumably to changes in the teaching in medical schools) towards agreeing a management plan with a patient, rather than prescribing it without consultation and expecting the patient to blindly follow. That said, I do find that I am still put in situations where I am forced to be ‘non-compliant’ – for example, when a junior doctor discharges me from hospital with instructions to reduce my steroids back down to my maintenance dose at a rate which I know is too quick for me and will result in my lung disease flaring again. After 20 years with lung disease (since my teens) I know, usually better than my doctors, how to reduce my steroids safely! In such situations, I have learnt just to nod and smile and then when I get home, do things my way! (although maybe I should be speaking up to junior doctors and using the situation as an opportunity for a bit of education on the fact that patients with chronic illness usually know their conditions better than anyone! – but I only have so much energy (not a lot, nowadays) and sometimes re-educating junior doctors is not the best use of it!). As a junior doctor with a chronic illness that, even back then, required regular hospital admissions, I was very aware of the fact that my patients were often the best sources of information about their conditions, especially if they were suffering from something rare or that wasn’t responding to normal treatment. As someone whose condition never behaved the way it was ‘supposed to’ according to the text books, or responded to the usual first line, second line, third line (etc) treatments, I was always aware that every new consultant I saw – and there were a few! – in addition to evaluating my condition, was also evaluating ME, and considering whether the lack of control over my condition was due to me not taking the prescribed treatment. Sometimes they would take my word for it; on other occasions it took random blood tests to measure the level of the various drugs in my blood to convince them. As a doctor, I understand the necessity to consider the issue – after all, in a small proportion of patients with any uncontrolled disease, it is due to the patient not taking their medication, and it’s important to find these patients, so that you can try to explore with them why they sometimes don’t take their meds, rather than prescribing ever increasing doses of more and more toxic medication – but as a patient, depending on how it’s done, such questioning can be deeply insulting and damaging to the doctor-patient relationship. I suppose that’s the key – ‘depending on how it’s done’ – perhaps it’s important not so much what word we use, but what our and our doctors’ attitudes are to the issue of ‘non-compliance’. If we are not taking our meds and managing our conditions 100% how our doctors think we should be, and our doctors feel that needs to be addressed, there are ways of sensitively exploring with a patient why this is, rather than just giving them a talking-to/telling off and a stigmatizing label. As someone who is on over 22 different medications and up to 50 pills every day, as well as breathing treatments (nebulizers), chest physio, oxygen and BiPAP (non-invasive ventilation via a tight-fitting mask – similar to CPAP but a bit more invasive) my illness invades most of my life – with that many medications and that much time committed to managing my condition, it’s natural that I’m going to arrange things so that I can have as much of a life as possible, and that means sometimes doing things slightly differently to the management plan dictated by my doctors. Our doctors may know what’s best for our lungs/glycaemic control/blood pressure/whatever, but only we know what’s best for our lives!

    04/4/14; 7:18 am
  9. Emily H #

    Wow, sorry for the mini essay – I have strong feelings about this subject!

    04/4/14; 7:19 am
  10. Kathy Early #

    I loved this post Kerri. As a diabetes educator and researcher, since reading an article by Russell Glasgow and Robert Anderson in grad school (Diabetes Care, Dec. 1999, v22, number 12, pg 2090-2091). It was in response to a study published earlier that year discussing the idea that we need to move away from “compliance” and to “adherence”. Glasgow and Anderson’s points were echoed by some of the points made here among the DOC. Health care providers cannot take diabetes away from patients, but we can use more or less collaborative and effective styles in how we work with PWD. Health care teams need to stop paternalizing diabetes care and ICD codes need to get rid of “non-compliant” and similar terms that really keep health care providers using these outdated and often-offensively perceived terms. Diabetes self-management is just that and it is not helpful for health care providers to use labels like this. Thanks for posting on this topic!

    04/4/14; 10:38 am
  11. Tandy #

    I’m a T1 for 35 years and an RN CDE. I always hated the “compliant” word. Several people have already commented on the paternalistic nature of the word, and that’s what gets me the most as an educator. Every time a health care provider uses that word, it helps encourage an unhealthy relationship between them and the people they are working with. It’s not just that “we” as health care providers are being paternalistic when we use that term, it’s that it encourages the “patient” to feel guilty for all their difficulties and hand over all their successes with their diabetes to the provider. I’ve had so many conversations with people who tell me things like “I’ll get these numbers down for you” or “I’m sorry I haven’t been good on my diet.” These statements, I believe, all come from the compliance context. If I’m in charge of dictating the rules, then the only satisfaction someone I’m working with can take when they meet a goal is that they pleased me. And when they don’t meet a goal, it’s not just their own disappointment to deal with, they also have to deal with disappointing me. This is so unhealthy! I spend a lot of time untangling this context with people and trying to build a context that is first of all realistic in expectations for control, whatever that means, and is based on their own short-term goal setting. Today I worked with someone who rarely takes his T2 meds, never checks his glucose, and eats about a dozen cinnamon rolls a week. We talked for a long time about healthy diabetes management and just general health and how he feels about where he is now and where he wants to be. At the end of the conversation he decided that the short term goal he can realistically make and keep is to add vegetables to two meals this coming week. I was excited just because for one thing, he stayed engaged in the conversation, and more importantly, he identified his own short term goal. If he succeeds at meeting it, he gets all the credit, and it will hopefully help him feel better about making other goals. Do I have ideas of what the next ones should be? Absolutely, but it’s not my diabetes, it’s his. He doesn’t have to answer to me about what he does or doesn’t do. Compliance is a trap, not just for the PWD but for their health care providers too. It’s not just the word, it’s the whole context around it.

    04/4/14; 6:18 pm

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