Why patients hate the C-word

Way back in 1847, the American Medical Association panel on ethics decreed that “the patient should obey the physician.” There may very well be physicians today – in the era of empowered patients and patient-centred care and those darned Medical Googlers who glance nostalgically backwards at those good old days.

Let’s consider, for example, the simple clinical interaction of prescribing medication.  If you reliably take the daily meds that your doctor has prescribed for your high blood pressure, you’ll feel fine.  But if you stop taking your medication, you’ll still feel fine.  At least, until you suffer a stroke or heart attack or any number of consequences that have been linked to untreated hypertension.

Those who do obediently take their meds are what doctors call “compliant”. And, oh. Have I mentioned how much many patients like me hate that word?

Simon Davies of the U.K.’s Teenage Cancer Trust once described the word compliance (and its ever-so-slightly less patronizing alternative adherence”) as words that sound like they have punishment at the end of them.

What both doctors and drugmakers might not appreciate, he says, is the very real emotional connection that patients may have to their medications.  For example, he himself takes a prescribed pill every morning for what he describes as a mild medical condition, but says:

“I hate taking it!”

He hates taking it? I wonder if his doctor knows about this. I wonder if he’s even mentioned to his doctor how much he hates taking it. I wonder if he has told his doctor why he hates taking it. I wonder if, after he decides to stop taking it (which he most certainly will if he hates taking it now), he will bother to confess his non-compliance to the doctor.

And just imagine how I and other heart attack survivors feel having to take a whole fistful of meds every single morning? Before being discharged from the cardiac ward, virtually every survivor is handed a prescription for a number of standard cardiac meds like blood thinners, anti-hypertensives, calcium channel blockers, ACE-inhibitors, beta blockers and statins. Few of these patients, if any, are asked how they “feel” about now taking all these daily drugs – even if they are the kind of person who has never taken more than an aspirin for occasional headache in their whole life until this moment.

Even some Big Pharma types have come to hate this C-word when it comes to drug prescriptions.

For example, Stephen Whitehead (CEO of the Association of the British Pharmaceutical Industry) admitted during an interview at Patient Summit 2012 in London:

“I hate the word compliance. I hate the word adherence. Because they’re just not patient-friendly words.”

Yet in the patriarchal top-down world of medicine, once the doctor pulls out the prescription pad, the only acceptable “compliant” response as an obedient patient is to take exactly what the doctor orders, no matter how much you may “hate” the very thought of doing so. The interaction from start to finish is fraught with unspoken miscommunication risks.

Most docs consider drug compliance to be a no-brainer. You’ll take this because I said so, because you need to take this, because you have Condition A symptoms which require Drug B to fix. And don’t patients want to get better? Shouldn’t they be doing what I recommend to achieve that goal?

Why don’t patients take their meds? 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.

Prescription drug use is heavily concentrated in people aged 55-65, according to Steven Findlay, senior health policy analyst at Consumers Union.

Of older adults, 12% are prescribed an astonishing 10 or more medications per week. Of those who stop/don’t start taking these meds as ordered, valid reasons include cost, unpleasant side effects, confusion about the regimen, forgetfulness, language barriers, and not feeling sick enough to need medicine.

As the New England Healthcare Institute reported in 2009, people living with chronic illnesses such as diabetes or high blood pressure are far less likely to take their medications as intended than people being treated for an urgent acute care problem like sudden pain or bacterial infection.

How many of those patients with chronic, longterm and progressive disease diagnoses are asked by their prescribers if they will be able to afford to keep taking expensive drugs every day for the rest of their natural lives?

And how many of their well-meaning doctors have a clue about the psychosocial fallout of standing over your bathroom sink every single morning of your life and reminding yourself that you are now some kind of a sick person who needs to take pills?

As I have written previously on my other site, Heart Sisters:

“From a physician’s perspective, there is considerable angst that this trend towards patient empowerment may lead to non-compliance – such as refusing to take medication as prescribed by the doctor.  But the reality may actually be quite contrary to that assumption.

“When patients refuse or stop taking the medicine or undertaking the therapy that their doctors have prescribed, the consequences might be serious. Apparently, 20-30% of North American prescriptions are never filled at the pharmacy. Doctors call that primary non-compliance.

“The World Health Organization estimates that only 50% of people complete the full course of medication therapy as prescribed, which can put longterm patient health at risk.  Doctors call this secondary non-compliance.

“Studies on patient compliance consistently show that there are indeed certain characteristics common to those non-compliant types who don’t follow doctors’ orders – but the results may surprise you.

“For example, a Boston University study looked at why patients with high blood pressure stop taking the medications their doctors had prescribed; researchers found that patients who were younger and less active in their treatment decisions tended to be less compliant than their older, more involved peers.

“Interestingly, the same study also found that these kinds of patients, when combined with health care professionals who were older, specialists, and physicians (compared with non-physician prescribers) tended to be even less likely to comply with doctor’s orders.

“What this study appears to be suggesting is that the less patients are involved in their own meaningful treatment decisions, the more they tend towards non-compliance.

“I heard an interesting comment recently that helped me to make some sense of non-compliance. Maybe it will help some doctors figure this out, too:

“The analogy was this: imagine your financial planner handing you a piece of paper instructing you to set aside 20% of your income in specific investments for your retirement fund. But for many practical (and valid) reasons, you decide against this plan.  Later on, when you show up for your regular portfolio review, your advisor indignantly labels you “non-compliant” because you didn’t follow his advice.

“Can you even imagine such a thing happening?  No. You likely can’t.”

Not surprisingly, non-compliance turns out to be a major headache for Big Pharma, too.

Pharmaceutical companies have spent millions to get those initial prescriptions into the bathroom medicine cabinets of the world. Remember those 50% of patients with chronic conditions who stop taking their prescribed medications, and the one-third who never fill their prescriptions in the first place? This lost sales opportunity costs the pharmaceutical industry an estimated $30 billion in revenues per year.

So the industry naturally worries about how to improve patient compliance. No wonder drug companies have started launching patient engagement programs to address non-compliance. Make no mistake: even when they are cloaked as noble support programs to help the poor misguided patient out there, they are also systemic corporate strategies to offset significant revenue losses.

And as one 2008 industry trade paper warned:*

“Any drug compliance program implemented must be able to provide improved compliance with the brand, as well as improved bottom-line profit for the brand.”

Phoenix family physician Dr. Melanie Lane had her own refreshing take on this issue in a KevinMD column:

“Most medications prescribed in the primary care setting just allow people to avoid taking responsibility for their own wellbeing. Those cholesterol, blood pressure and blood sugar pills may prolong your life, but they won’t make you happy or well. The more pills you take, the more potential adverse reactions are possible.

As reported by The People’s Pharmacy, another missing link in the C-word discussion may well be the basic concept of mistrust, citing patients’ concern about side effects, alarming drug industry recall/marketing fraud scandals, or longterm unintended complications of taking many drugs.

“What has been missing from this decades-long debate on compliance is the question: why don’t patients take their pills? Health care professionals and drug companies have seemingly ignored their own responsibility in this discussion.

“One of the major reasons people are reluctant to swallow prescribed drugs is a lack of trust.

“Poor adherence may have a lot less to do with uncooperative, lazy, unmotivated patients and a lot more to do with distrust of drugs. Physicians are going to have to demand better data from drug companies and the FDA if they plan to convince patients that the medicines which are supposed to be helping are not going to cause unexpected harm down the road.”

There has indeed been little rigorous research on how to get more patients to take medications as instructed, but studies have pointed to some promising approaches, according to the New England Healthcare Institute report. These may include:

  • simplifying drug regimens (like prescribing once-a-day pills instead of four-times-a-day)
  • educating patients on their disease and their medications
  • enlisting case managers and pharmacists
  • using health information technology
  • lowering drug costs

The Institute also recommends some system-wide changes, such as revamping how health care providers are paid. Rather than reimbursing doctors based on the number of patients they see each day, they could instead be paid based on how well their patients are doing, their report says.

Finally, 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.”

It strikes me that, no matter which option health care providers (or their pharmaceutical industry pals) choose, there remains a deeper, darker reason that we are just not c  . .  c . .  c . . compliant around taking our meds.

See also:

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* Dr. Andree K. Bates. DTC Perspectives. March 2008. “Patient Compliance Programs: How to Ensure They Are Not Doomed to Fail”

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17 thoughts on “Why patients hate the C-word

    • Also, it is not necessary to use ANY of these words. Rather than using judgmental, paternalistic terminology, one could simply write, “Pt reports not taking meds BECAUSE xyz.” The “because” part is important. Otherwise it just reads like an accusation.

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  1. What an excellent piece, Carolyn. I, too, shudder at ‘compliance’, which contains a nasty echo of another c-word, coercion.

    When my mother was diagnosed with a pre-leukemic blood disorder at the age of 80, she was given a fistful of pills to take at various times during the day, and even though she was completely compos mentis and committed to taking her medication, she was overwhelmed by the regimen.

    When I stayed with her for a couple of weeks, I felt exactly the same way. It’s tough enough to have to deal with a life-threatening diagnosis without enduring a bewildering array of instructions and pills, not to mention drug interactions and side affects.

    Perhaps big pharma could spend some of its massive profit on creating medications that can be taken in a single daily dose.

    Liked by 1 person

    • Nice to hear from you again, Kate. Your mother’s story is a great example of this issue at work in real life. I’m guessing that if your mum’s doctors had also been ordered to somehow juggle those multiple meds at precisely the correct time of day, the penny would have dropped.

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  2. Great article with some interesting thoughts.

    I will point out that there is no one size fits all approach. To give a “for example,” one suggestion in this article was to prescribe medications that need to be taken fewer times per day. Well the most recent prescription I did not take as prescribed was an antibiotic for an ear infection. I was somewhat hesitant to fill it because I know that antibiotics are not actually recommended as a first line of defense for ear infections, being that most are viral. But I was pregnant, felt miserable, and was *trying* to be compliant for the sake of my baby. I sent my hubby to the pharmacy to get the prescription. When he got there he learned that my Dr. had prescribed a twice per day pill that would cost $40, while the 3 times per day pill (same amount of med in 24 hours) would cost just $4. If I had been picking up the prescription I would have called my Dr’s office from the pharmacy and asked if the prescription could be modified. But my husband didn’t–he accepted the prescription at $40. Brought it home, where I discovered that they were “horse pills”– HUGE! I’m usually good with swallowing pills. But these? Ugggh. They needed to be cut in half. So I took one or two of them…and then the rest of the pill bottle sat in my medicine cabinet un-used until I decided to dispose of them.

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    • Thanks so much for sharing this story. Yours is a classic example of the pitfalls of drug-taking “compliance”. First, you were reluctant/not convinced that the prescription was actually necessary in the first place (that was a huge factor before you even opened the pill bottle!) Second, the pill size was so problematic that you wonder why the drug company – or even your pharmacist! – would let this issue slide by. And you ended up spending 10 times more than the cheaper (identical) drug.

      Q: Were they deliberately trying to make taking your meds as difficult as possible?

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  3. My daughter was a student without insurance at the University in Tucson. She has PTC. She had no money for the prescriptions so her doctor put down that she was non-compliant. It infuriated her because it looked on paper as though she was refusing to follow her doctors recommendations.

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  4. Perhaps “compliant” should be changed to say “conscientious,” or “take-charge.” Being described in those terms sounds more positive. But then, I don’t mind being called “compliant” when it comes to taking medicine. To me it means “agreeable.”

    When my doctor considers adding a medication, (and I currently take six pills a day for various things) I might ask “could I try three months of more exercise to see if it lowers my blood pressure?” Sometimes he has been willing to agree with that request. But when he gives me a good reason as to why we should add it, then I understand better and I agree with him. So I never feel like a little kid following rules. I feel like a responsible adult who wants to stay healthy and active.

    I’ve been much more likely to forget a pill if I have a sinus infection or something, because it isn’t in my daily regimen. Otherwise, I never forget my daily pills. And I don’t question or fight taking them. I’m 61 and I’ve had high blood pressure since about age 51. I exercise, watch what I eat, and take pills. My doctor prescribes them because he is the expert about medications and how they work. But I take charge of my health by taking them. To me, it’s a no brainer, because the thought of a heart attack or stroke is not on my agenda. To me, I’m just being proactive about taking good care of myself, with the advice and guidance of my doctor.

    Liked by 1 person

    • I disagree. Turn it on its head. We’re talking about not judging people who decide not to take their meds or can’t take their prescribed meds for any number of reasons. If we use the word “conscientious,” the opposite is very judgmental. The term needs to be value-neutral.

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  6. In the case of type 1 diabetes, achieving a level of blood sugar control that minimises your risk of long-term complications whilst avoiding immediate death from hypoglyceamia is a complex art of titrating insulin doses according to your food intake, stress, exercise levels and a multitude of other factors and constant vigilance in monitoring and acting on the results of your home blood glucose monitoring.

    A reasonably speedy and unpleasant death is the result of failure to take insulin at all for a day or 2. Compliance is such a grossly inadequate word to describe the regime of a type 1 diabetic, no doctor can possibly give me detailed enough instructions to “comply with”, there’s a lot of trial and error and learning by experience-and I’ve had type 1 diabetes for 44 years!

    Prof. Jay Skyla uses the term “infinite creativity” in preference to intensive insulin therapy and I like this term also in preference to compliance.

    I am managing my diabetes with infinite creativity!

    Liked by 1 person

    • Hi Melinda – love that terminology “infinite creativity”! People living with diabetes are the original self-trackers – a relentless pursuit! Thanks so much for sharing your perspective here.

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  7. I started being compliant, however nasty side effects to medications have caused me to be extremely distrustful of any pharma drugs. I took bp medications and developed diabetes with bd sugar at average of 503. I was given diabetic medication (metformin) and another bp medication (without my knowledge) lisinpril. I developed many other side effects I still have to this day…they include(d): hair loss, rapid heart beat, hot flashes all day and night, difficulty sleeping, muscle ache, arthritis, pain in my right side of body, nasal drip, etc.

    The funny thing is that I kept forgetting to take the bp medication (lisinpril) and then my blood sugar level went back down to normal (average 142). I also stopped taking the metformin (for last 3 years).

    I during this time googled the drugs I was taking and the condition of diabetes that I had. Similar to scurvy, many people recover from type 2 diabetes when the proper nutritional needs are met. However, my doctors and the medical establishment would have people believe that this isn’t possible.

    The sad…very sad thing about type 2 diabetes, is that if you take the medications (diabetic, blood pressure, statins, etc.) that are prescribed to you, your body will gradually become more unable to metabolize sugar. This is because these drugs while they suppress symptoms appear to damage the body in ways that make it more prone to chronic illness. Doctors need to go back to being healers, and also to know of natural remedies, and how food supports and can help the body heal itself. Doctors need to get away from selling drugs and to realize that the boundaries of defining disease continue to grow every few years, often voted/paneled by those who have direct financial ties to the pharmaceutical companies. Please understand, I’m not saying that pharma drugs don’t have a place; they do. The do wonderfully well in the short term; but side effects tend to occur with long term usage.

    According to reliable sources, Americans represent 5% of the world’s population, and take over 50% of the all prescribed drugs. Yet, we are currently ranked in the 50th percentile among other industrial nations in terms of health, and longevity.

    I will remain uncompliant until it’s absolutely necessary for me to do otherwise. I chose quality along with longevity of life.

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  8. By the way, My bp prior to taking bp regularyly was clocked at approx. 157. However, prior to this reading, I had been taking cough and cold medicine. These medicines I’ve been told can increase bp. This didn’t come to mind until much later. My doctor had blood work done on me and my fasting blood sugar was 91.

    Approxi. 6 months later, one day while at work, I felt a violent shift in my body. Immediately afterwards, I became extremely thirsty, needed to go to the bathroom frequently, and after a week of this, my vision became blurred. At my doctor’s instance, I had additional blood work performed. My fasting blood sugar at this point was at 393!!!!! Gee what a jump!

    When I finally went to the doctor to see what was happening, approx. one month later, I asked whether or not the blood pressure medication had anything to do with the increase of blood sugar…I got silence. When I asked whether or not Diabetes type 2 could be healed…I was told under muffled laughter that perhaps if I lost a lot of weight this could happen. My AIC 16.5 (503 BLOOD SUGAR).

    I did a lot of research to find out bp medication causes a lot of people to develop diabetes, and that diabetes medications can cause heart problems. I’m currently off all medications. My bp at times is read at 144 and 2 seconds later on the same arm at 128. From what I have read really dangerous bp when one is beyond menopause is over 180 or much higher. A side effect of bp medication includes memory loss…could that possibly be due to not enough blood reaching the head?? I have also read that over 40 years ago, a fasting blood sugar of less than 200 was considered fine and not diabetic. Now fasting blood sugar over 100 is considered cause to prescribe medication. Could this possibly be one of the reasons why MORE people are becoming diabetic….the disease category has been expanded (downward). Oh, metformin the first line of defense…there’s a corrollation between taking this drug and developing arthritis. Between the AIC 16.5 – 503 blood sugar reading and the 6.2 – 142, I lost only six pounds.

    I know that many doctors have hearts of gold, but unfortunately an 8-minute visit is not enough time for me to evaluate whether or not this is true or not or whether or not they are operating under the pressure to sell more drugs. I thought that the doctor who practically ran my health into the ground had extremely good intentions for me. Perhaps she did…but I cannot trust a medical industry with such strong ties to drug companies. Not ever ever ever again!!!!

    Instead, I do try to be healthier…green drinks, herbal supplements, exercise, positive thoughts, gallbladder liver flushes (so many of my health concerns disappeared), eating organic, etc.

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