Non-compliant patients who, for whatever reason, do not follow doctors’ orders are a pain in the neck to their physicians. But to me, the most problematic part of that statement is the use of the word non-compliant. Simon Davies of the U.K.’s Teenage Cancer Trust once described it as “a word that sounds like it has punishment at the end of it.” Yet physicians are frustrated about why so many of us still refuse to take their expert medical advice, particularly around taking recommended medications.
And as I’ve written in Why Don’t Patients Take their Meds as Prescribed? , for example:
“Some commonly held theories include forgetfulness, distressing side effects, the challenge of managing multiple prescriptions, psychosocial and cultural issues, uncertainty about the actual need for the medicine, and – of course – cost..“Let me just offer this pearl: this is a multi-faceted, complex issue, so what we don’t need is a single-purpose beeping, flashing pillbox to remind us to take our meds.”
Dr. Subho Chakrabarti explained in a 2014 study on this subject that the word compliance is defined simply as “the extent to which the patient’s behaviour matches the prescriber’s recommendations”.(1)
He knows how important it is to physicians that patients follow their advice. When they don’t, the problem is often compounded by a continued decline in following advice over time (so if you start off ignoring your doctor’s advice, you’re unlikely to suddenly stop ignoring it later on).
And he adds that this can not only adversely affect the outcome of your treatment, but it places a huge burden of wasted resources on society.
” Compliance refers to a process where the clinician decides on a suitable treatment, which the patient is expected to comply with unquestioningly. The word has adverse implications for patient autonomy and the clinician-patient relationship.”
Enter the new improved term, adherence. Dr. Chakrabarti describes this potential replacement for the word compliance as part of an effort to place the clinician-patient relationship in its proper perspective:
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“Adherence refers to a process in which the appropriate treatment is decided after a proper discussion with the patient. It also implies that the patient is under no compulsion to accept a particular treatment, and is not to be held solely responsible for the occurrence of non-adherence.
“Adherence has been defined as the extent to which a person’s behaviour, taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider. It requires health care professionals to embrace patient participation in deciding treatment choices, and being non-judgmental about patients’ behaviours.”
“To overcome certain problems in the concept of adherence, a third term concordance has been introduced.
“The concept of concordance has evolved from a narrower view, emphasizing an agreement between the clinician and the patient, which takes into account each other’s perspective to a broader process consisting of open discussion, imparting information, and supporting patients’ behaviour changes.
“It is a therapeutic relationship which entertains patients’ views, and acknowledges that patients’ views have to be respected even if they make choices which appear to be in conflict with the clinician’s views.”
This must sound like crazy talk to many physicians. They watch in frustration as their carefully considered recommendations are ignored, as people who could get better get worse because they refuse to follow recommendations, and as a growing segment of patients seems to openly question these educated opinions. .
Consider the important work being done by Mayo Clinic’s Dr. Victor Montori and his colleagues on the concept called Minimally Disruptive Medicine. This approach focuses on the “burden of illness” carried by patients living with chronic progressive disease. As Dr. Montori explains:
“One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives.
“This concept of burden of treatment relates to the distress (including suffering, interruption, inconvenience) caused by treatment-associated demands for time, attention, and work.”
PhD student Christiane Grünloh lives in the beautiful city of Cologne, Germany. In her recent HTO essay called Behaviour Change, Social Practice Theory, and Learned Helplessness, she also writes of this new term called concordance, about a patient living with Parkinson’s disease:
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” He made a very conscious and informed decision not to take his prescribed medicine due to negative side effects that were so strong that he feared he would lose his family. This patient probably would have been labelled ‘non-compliant’. But his situation was more complex than that.”.
..” The approaches that I perceived as paternalistic may serve the society at large (i.e. take your medication, stop smoking, exercise more, eat healthy… so that you don’t become a burden to society)..“But these alternative approaches use coaching and reflection to help the individual to help themselves. In the end, the goal of the individual might be in concordance with or contribute to the societal goals, but the underlying basics of the approaches are quite different..“Why not aim for systems that help individuals to reflect on their behaviour, possibly help them change for the better (whatever that is…) and by that potentially contribute to the greater good?”
Dr. Chakrabarti sums up the compliance/adherence/concordance question like this:
“Although none of these terms are ideal solutions to understanding the complex process behind patients’ behaviours, the move from compliance to adherence and concordance represents genuine progress in this field, which puts the patient’s perceptions at the centre of the whole process.”
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Subho Chakrabarti, “What’s in a name? Compliance, adherence and concordance in chronic psychiatric disorders”, World Journal of Psychiatry. 2014 Jun 22; 4(2): 30–36.
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Q: Compliance, adherence or concordance: which is better?
NOTE FROM CAROLYN: I wrote more about heart medications and how patients adapt to their cardiac diagnoses in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
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See also:
“I’m just not a pill person” – and other annoying excuses
Why don’t patients take their meds as prescribed?
Deprescribing: fewer drugs, better health outcomes?
Why you’ll listen to me – but not to your doctor
Non-inspirational advice for heart patients
Why don’t patients listen to doctors’ heart-healthy advice?
Women, controversial statin guidelines, and common sense
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Heart Sisters 
Wow!
These stories in the comments are hair-raising.
I became worried by heart flutters when I reached the age my Dad had his fatal heart attack.
I was sent immediately to a heart clinic for a full inspection. Terrified as I watched that little twitching thing on the screen, thinking ‘THAT is what keeps me alive?’…
The verdict? Strong as an ox and no worries!
The flutters were the menopause.
I live (thankfully) in the Netherlands.
This occurred 10 years ago. Not sure if it’s as perfect since Corona, but this is sure how it ought to be.
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Merle, I agree – this is exactly how it ought to be: sent to the heart clinic immediately for a full inspection – and the ‘strong as an ox’ diagnosis was a terrific bonus.
I have had several holidays in your beautiful country, mostly Amsterdam and Haarlem (my brother and his family live in Belgium, so ‘in your neighbourhood!’)
Take care, and stay safe. . . . ♥
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This article and blog is amazing, everything you mentioned in the blog, I agree with you.
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As a newly diagnosed 55yr old female with a moderately blocked artery, I found this site and had hopes of connecting with other women who have gone through heart disease diagnoses to get some inspiration that life can still be good. After reading a few of the posts I’m kind of depressed (or more depressed) with all the negativity around “Big Pharma” and doctors. I realize people have been let down but at this point I need inspiration and hope, not doom and gloom.
I didn’t fit any of the risk factors for blockage: career in fitness, triathlete, runner, great diet, no family history, optimal weight, and then started to have chest pains while running. Only risk factor had been high cholesterol numbers, but both HDL and LDL were high so the ratio was ok – so no statins were recommended (no big Pharma pushing drugs, which now I wonder if they had I might not be in this position – so not all drugs are bad).
My GP did not dismiss me and did a cardiac workup which was inconclusive so she sent me to a cardiologist. Although the cardiologist thought a blockage was unlikely he too did not dismiss me and sent me for a CT Angiogram which in turn showed a moderate blockage in one artery – BOOM 😦 Everyone is surprised.
Being a very active, “fit” person until now this has been a huge blow to my life. I am hoping to find a support group who maybe go on regular walks or hikes, or bike rides. I would love to connect with other athletes that have had a let down like this but have moved forward and have some great suggestions for me and a good outlook on life. If that may be you, please let me know! I live in Victoria.BC. Canada
Thanks!
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Hello JMW – I can appreciate what a shock your recent diagnosis must have been for you. When I was at Mayo Clinic attending the WomenHeart training after my own heart attack, there were 45 other heart patients attending our class, age 31-71, a group that included triathletes, vegans and even a physician (the most surprised woman in that group!) I’m not a physician, but I can say that the most encouraging part of your story is that your coronary blockage was described as “moderate”, which likely means you didn’t need an invasive procedure to treat it, which also likely means your prognosis is positive, and YES, life can indeed still be good for you.
Normally, I’d recommend that you sign up for a supervised cardiac rehab program, but, in my experience, triathletes usually don’t think they belong in such a group because they’re already so fit. You can call any of the Victoria rec centres that offer these Take Heart programs to get more info.
You might also want to consider signing up for the next Heart To Heart 7-week education program for newly diagnosed heart patients at the Hillside Health Centre. They run all year round, and feature a weekly guest speaker (cardiologist, pharmacist, kinesiologist, etc) – more info here.
Lastly, there’s a free WomenHeart support group on the third Wednesday of each month at the Jubilee Hospital run by a former cardiac nurse (she’s also a heart patient) and a cardiac social worker. Just email Rose or Barb at the email I’ve posted on the right hand sidebar of this page (scroll up!) under The News.
Neither Heart to Heart nor the WomenHeart group are based specifically on walking/hiking/biking activities, but chances are good that in one or both, you’ll meet some other heart patients with similar goals and interests who might want to join you.
Best of luck to you…
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Thanks Carolyn, I will follow up with the support group and contact the Take Heart instructor for more info. You are correct that I don’t need any intervention just statins but adjusting to a new norm is very upsetting. As G.Fire says I need to find my “new people”.
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JMW, I can understand your situation. I’m a long-time cyclist who was diagnosed with atrial fibrillation and flutter in 2008 at the age of 50. I, too, was an active and fit person with none of the standard risk factors. This is likely one reason why proper diagnosis took 10 yrs., a story unto itself, as partially described in a new book about athletes who develop heart issues.
I’ve reduced the frequency and intensity of my work-outs, but am still bicycling and weight training regularly. I hope you find understanding and inspiring exercise partners, or your “People,” as my female cycling buddies call our group.
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Thanks for this supportive message to JMW – I’m guessing that the book you referred to is Dr. John Mandrola’s book on The Haywire Heart? I ordered it last week and am looking forward to reading it…
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Another thought provoking post, Carolyn.
After provoking my own thoughts, I don’t think it actually matters what we call it. Those who “follow” doctor’s “orders” blindly will continue, those who “question” will continue questioning etc. Our own personalities, experiences will continue to dictate no matter what we call it.
There are times when I’ve wanted a doctor to be more directive/authoritative since I knew I was not in a frame of mind to sift through the information and make my own decision. Other times I’ve welcomed collaboration (I’m lucky to have collaborative doctors, for the most part), and there are times when I’ve simply been non-compliant.
Perhaps because I live in an area where doctors are abundant (as are alternative health care modalities) and it’s easy to find and switch doctors, many are a bit more “sensitive” to patient needs?
Changing the “language” would help some but for me (thanks to you) I’ve now decided it’s a non-issue.
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I agree mostly, Judy-Judith. As you say, it’s not the specific words chosen, as much as it is the attitude that spawned the words in the first place. And no matter how directive or authoritative a doctor might be, the patient is still the one who ultimately decides on whether to “comply” or not. (Many perfectly directive/authoritative docs do not necessarily end up with compliant, obedient patients who follow directions, after all – and then the docs get to toss the accusatory “non-compliant” word around!) FYI, here’s a really terrific look at words that drive some patients crazy from the BMJ.
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Carolyn, I have had a best guessed diagnosis of Prinzmetal’s angina since 1989. I still can remember my first episode. Very scary. I’ve seen many drs, been in hospital many times etc. always at rest, mostly during nite.
I am now a 68 year-old woman. I take 120 mg insurance daily, 10 mg am and pm Altadena and 80 mg Pravachol and nitro as needed. Any thoughts?
>
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Slooze, I’m not a physician so of course cannot make any comments about your specific regimen (plus I think some typos – “insurance” and “altadena”, for example, make your question hard to figure out). Speak to your local pharmacist and your physician to request a medication review to make sure that what you’re taking is what you should be taking. Prinzmetal’s is often hard to diagnose these days – back in 1989 it must have been even tougher to get appropriately diagnosed! Best of luck to you…
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I am happy to be here even though I am a man! My heart attack was 5 years ago and I still have trouble doing stairs or walking on level ground… I wind easily. I have had all the new tests very recently too. I am overweight but even after the attack and losing 30 lbs I still had these problems. Some is from heart failure and I take Lasix for that… some coughing at night and in the morning. I know many heart attack victims but they do not complain of these symptoms. My anxiety was bad making it worse this past winter – very uncomfortable hyperventilating made me go straight back for more tests. The Lasix has helped.
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Hello Wayne – sounds like you’ve been having quite the time lately. I’m not a physician so cannot comment on the specifics you describe, but I can say generally that the symptoms you describe seem to fit those of people diagnosed with heart failure more so than those who have had a heart attack (which might explain why the heart attack patients you know don’t share the same symptoms). I hope your test results help your cardiologist and you decide on some new treatment plans that will help you.
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Negotiation comes to mind. I had *one* doctor out of the dozens I’ve seen for my array of health issues who was truly paying attention when I brought up serious reactions to a med he prescribed (a beta blocker). We negotiated – he reduced the dose and promised to have me taper off after a couple more months – with me willing to take it under those circumstances because I
a) understood the benefits to my heart, even if temporary, and
b) I could seen the end in sight.
ONE doctor out of dozens was willing to do that. Others start out *acting* like they’re willing to listen, respect my issues, and negotiate a compromise, but none has continued in that way. Instead, it’s “my way or the highway” when I bring up the problems again later on.
Doctors are trained to be gods. I’m sure Big Pharma is part of the problem, at least in the US, but it’s the initial training that’s the problem. They slot every patient into a chapter in a textbook and if the patient doesn’t fit that slot, must be the patient’s fault – she’s non-compliant or otherwise incompetent, it can’t possibly be the textbook and doctor-god who’s wrong.
And then they do love slapping bandaids like anti-depressants over the sucking chest wounds of real diseases like hypothyroidism. My primary care provider tried to convince herself my hypothyroid symptoms were from any other cause – including stomach cancer, would you believe? – rather than the fact I wasn’t responding to the treatment she prescribed and needed a different med. Utterly amazing.
Holly
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Negotiation is another good word, Holly. You’ve had that experience with your beta blocker-prescribing doctor – what a great example! I wish you good luck in meeting more doctors in the future just like him.
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Let’s not forget the role of support groups. If I have a frightening health issue with an even more frightening treatment, I need to hear from other people how following that treatment has helped them. I may politely listen to my doctor, but when it is another person in my shoes giving me their experience, strength and hope, I will be in a better place to try the recommendations of my doctor.
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I agree, Lisa! Personally, I’ve found Inspire’s WomenHeart support community (over 31,000 members worldwide) to be so helpful since my own heart attack (and especially since my subsequent diagnosis of coronary microvascular disease – a condition that’s not well understood by some (many?) physicians) but very well understood by the women who know what it’s like to experience it every day. These women are gold mines of information learned through lived experience, available 24/7 at no charge, with no judgements, and with remarkably consistent accuracy.
Interestingly, the British Medical Journal (BMJ) once reported that inaccurate statements in online patient groups are in fact rapidly corrected by other participants in subsequent postings. Researchers found only 10 of 4,600 online patient group postings studied (that’s just 0.22%) were actually found to be inaccurate. But of these, seven were identified as such by other site participants and corrected within an average of four hours and 33 minutes!
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I don’t mind the word adherence so much. All imply rules and regulations with no choice by the patient. Until a doctor is in our shoes, our homes, etc. they are issuing rules and regulations. I will do my best to adhere to medications , etc. but I expect my doctor to understand if I’m having side effects that are making my life a living hell and not judge me for wanting to try another medication. (One doctor actually told me I was quitting too soon, she badgered me to take them for another few weeks.) I don’t need the judgmental attitude I have found in some doctors.
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Hello Fran – I hate hearing stories like yours (feeling “badgered” by doctors!?) The thing is: all patients certainly DO have a choice, providing that we understand completely the pros and cons of making decisions that can affect our health and our lives.
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Concordance forever! In the past I’ve had to argue with docs who apparently thought so little of my intelligence that they didn’t trust me to know if a course of treatment or a med’s side effects were painful or otherwise distressing.
Now, thank God, both my PCP and my cardiologist accept and value my word. As far as I’m concerned the old patriarchal mode [which, mind you, applied [applies] equally to bossy nurses too] is just another version of misogyny; medical staff with God complexes are devoutly to be avoided. I simply refuse to accept any of it.
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How wonderful to hear rave reviews for both your PCP and your cardiologist, Sandra. That’s how all patients should be describing their relationships with their docs!
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Thank you Michelle for your comment… I have found from my limited experience as a heart patient that doctors don’t like to be questioned… even with all of the diplomacy one can garner. Being a patient is not a question of compliance, adherence, or concordance. It should be an exercise in collaboration but that does require intense listening, researching reliable sources and observing the body that is not broken but is malfunctioning for some reason.
The bias I have experienced is that of doctors who want to ignore the possibility that the side effects from medication might overwhelm the benefits. What I have discovered is that my doctor is amazed when I do well with no real intervention from him and scarcely knows what to say. And life goes on and I am thankful for that!
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Hi Carol – it seems that your definition of collaboration sounds a lot like that of concordance, after all. If you encounter drug or other medical side effects/adverse events in the future, by the way, please consider reporting them to the FDA (you can do this online here). That’s the only way they’ll hear about “side effects that overwhelm the benefits”.
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It’s been my experience that when I tell someone who is supposed to be a trained medical professional that I am ‘chemical sensitive/drug intolerant’ … and often I’ll give some of the severe, life-threatening side effects I get … that the ‘someone’ – a doctor – still persists in attempting to force me to take the drug/drugs.
One disease in particular that provokes drs to insist I take anti depressants and go to a psychiatrist is Fibromyalgia! These drs do not ASK me if I’m depressed, they TELL me! I say I’m not, they refuse to believe me – in essence, calling me a liar – a mentally disturbed liar, apparently.
Thing is, I’m a mature woman over three quarters of a century old … I’m intelligent, logical, independent in my lifestyle and in full capacity of my mental faculties. I was ‘fired’ by one of these drs for this non-compliance and threatened several times by the next one … until I ‘fired’ her for non-compliance relative to disrespecting me and my right to choose not to take drugs that do things worse to my body and mind than the disease itself – and that I don’t even need.
Last I heard, America is not a communist country, it’s a country in which we have rights to make our own life decisions as long as they do no harm to ourselves and others. It’s one thing for a dr to advise and educate, but inexcusable to force a patient to take drugs known … by the patients and by the drug manufacturers … to cause serious side effects, including heart attack, stroke, and … death. My lips and side of my face have swollen up, I’ve developed rashes, become depressed … even suicidal! … developed severe joint and bone pain making my day to day life unlivable. I even did have a heart attack from drugs. But, no medical person cares to listen, or cares – at all! They Rx one drug that causes certain side effects, so they RX another drug to counteract those side effects, then another drug for the second drug’s side effects … and on and on until the patient walks into the drs waiting room carrying a supermarket plastic bag filled with “all the drugs you take” that drs nurses tell patients to bring with them for each appointment.
The thought wave now is that doctors get so much money and perks such as vacation trips to exotic locations from Big Pharma that they will continue to push drugs to, I guess, meet their limit to fill their pockets.
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Hello Michelle – one line of your comment stood out for me: “I’m intelligent, logical, independent in my lifestyle and in full capacity of my mental faculties.” Yet when your preferences and needs are ignored, it can feel as if a health care professional (sometimes one who has never even met you) dismisses that description. I believe that those “vacation trips to exotic locations from Big Pharma” you mention are a thing of the past, given current beefed up conflict of interest rules, but there are still many less-obvious examples of the profound influence of the drug/device industry on the practice of medicine.
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Good response Michelle! I agree with everything you state. And I still believe Big Pharma is lining the pockets of the medical community. It’s all about the money, not the patient’s health and well being.
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