Why patients hate the C-word

29 May

by Carolyn Thomas     @HeartSisters

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 sin 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 patient 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?

So 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.

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. See also: Why don’t patients take their meds as prescribed?

Feeling overwhelmed isn’t officially on that list, but it should be top of mind for every prescriber out there – especially for those with older patients. Depression isn’t officially on that list either, and it’s definitely not top of mind for prescribers of cardiac meds, but depression is common in up to half of all heart patients, yet appropriately identified in barely 10 per cent of them. People who are depressed tend to be far less likely to follow doctors’ orders – like taking prescribed meds, for example.

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 identified by researchers include cost, unpleasant side effects, confusion about the regimen, language barriers, and not feeling sick enough to need medicine.

As the New England Healthcare Institute reported in 2009, people living with chronic health conditions 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 (if any) of those patients living with chronic, longterm and progressive medical conditions 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 an inkling 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 all these pills? How many have an inkling of what kind of home patients are being discharged to? Before I was discharged from the CCU after my heart attack (that’s the intensive care unit of cardiology), not one physician, not one nurse, not one janitor asked me anything about my life at home. Did I have anybody at home who could help take care of me? Was there anybody at home whom I needed to take care of?

As I have written previously here:

“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.

But make no mistake: even when they are cloaked as noble support programs to help the poor misguided patient out there, they are also systematic 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.  See also Don’t Take This Personally, Doc…

“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.

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 treatment carried by many 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 patients are sometimes not c  . .  c . .  c . . compliant around taking our meds.

And by the way, if you think uncooperative patients are the only ones labeled “non-compliant”, consider this: while health care providers wonder why their patients don’t take their meds, patients are wondering why you don’t wash your hands.

NOTE FROM CAROLYN:  A version of this post was originally published on The Ethical Nag: Marketing Ethics for the Easily Swayed in November of 2012.  I wrote much more about what motivates patients to change behaviour – or not! – in my new book ‘A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, November 2017)

Q: Can you think of a better word to use than “compliance”?

See also:

.

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

 

11 Responses to “Why patients hate the C-word”

  1. Shelley April 19, 2017 at 2:24 pm #

    It’s a pity you don’t have a donate button! I’d most certainly donate to this superb blog! Will also share this with my fellow patients on our Facebook support group.

    Liked by 1 person

  2. Ashley June 10, 2016 at 9:37 am #

    Thanks for sharing! I’m an occupational therapist and you have opened my eyes to a new understanding of the word compliant. I use that word all the time in my profession! It’s never occurred to me that it could come across as condescending, but it makes sense now why it always seems my education goes in one ear and out the other.

    I feel a lot of “non-compliant” patients hate the way meds make them feel but also lack the understanding of how important it is to maintain a healthy lifestyle and take their medicines regularly. It amazes me, of what I think should be common knowledge, isn’t.

    A lot of my patients believe once their symptoms are controlled, such as bringing high blood pressure to normal levels, it will stay that way even if they don’t take their medicines. The meds make them feel yucky, so once their lab results are reading normal levels, why continue taking meds and continue to feel yucky? They then continue with high risk behavior, like inactivity and poor diet because no one has told them these behaviors increase the risk for a heart attack or stroke. So combine this with not taking their meds, and then they end up back in the hospital, and yet still don’t understand why they had another stroke or heart attack.

    Truly, a lot of my patients are baffled that this has happened to them for a second or even third time! I feel there needs to be a greater shift in focus for doctors and other healthcare providers on educating patients more about the illness, recovery, and prevention. Prevention to me is key and seems to be a lacking focus in the healthcare arena. My career has taken a shift, and while I continue to work in a hospital setting helping people recover from disease, I am focusing on creating a consulting business to help educate, prevent, and reduce the risk of disease before it occurs. Maybe we can begin looking at healthcare with a prevention mindset rather than a reactive mindset, then we may have less people needing to take all those pills nobody likes taking.

    Again, thanks for sharing!

    Liked by 1 person

    • Carolyn Thomas June 10, 2016 at 9:52 am #

      Thanks so much for sharing your perspective as a health care professional, Ashley. You raise a key point, but then seem to sidestep over it: “patients hate the way meds make them feel”. It’s so easy to under-appreciate this reality as significantly damaging to one’s daily quality of life, and one reason people stop taking these meds. Of course they will if they feel “yucky” every single day.

      I agree with you 100%: prevention would be so much better than waiting for a diagnosis. This has been a huge issue tackled by many people far above my pay grade for years, with only limited success given that health care professionals are rarely financially incentivized to spend time urging prevention. Best of luck to you in establishing your new business.

      Like

      • Ashley June 10, 2016 at 11:18 am #

        Oh gosh! It’s not puzzling at all to me why people stop taking meds because of the way it makes them feel. I see it on a daily basis as my dad tries to manage the struggles due to heart failure. I see the effects it has on his life everyday. But, he continues to take his meds and he also continues to walk, talk, and care for himself. I’m more puzzled when I work with a patient and they had no idea what the repercussions of not taking those meds are. They can’t believe they had another heart attack or stroke. And, like I said, sometimes, I work with people who have had 3 or more. Each time making the person more and more debilitated. I’ve had patients who made a complete recovery from their first stroke, and then had another one, and then ended up in a nursing home. Majority of the time someone ends up back in the hospital is because they weren’t taking their blood pressure meds. I guess coming from the perspective of seeing people go from being completely independent to completely dependent in an instant makes me encourage my patients to take their prescribed meds and to not stop until the doctor says its ok. Even if it makes them feel bad. Those bed bound patients I work with, feel a lot worse! And, that’s why I make sure my dad takes his meds regularly, despite his complaints. Again, I feel it comes down to education. People have a choice to either take their meds or not, but if they choose not to, I hope they are well educated on those consequences. Then they are able to decide for themselves if not taking the meds is worth the risk of having a reoccurence. It’s when someone isn’t given the knowledge to make an informed decision, that’s when I become puzzled. I don’t understand why they weren’t told what could happen if they stopped. You are definitely right about the barrier that exists because there is no financial incentive for prevention among health care workers, mainly doctors. That is a huge obstacle that needs to be overcome. Thanks for the response! I love good conversation that helps me look at all angles of situations!!

        Like

  3. Eve Hauser May 30, 2016 at 8:07 am #

    I am constantly baffled by this issue. Ever since I was discharged from the hospital following my heart attack with a boat load of prescriptions to fill, I have taken them faithfully. I am the compliant patient, but I never feel as though I have any choice but to do so.

    I have always been confused and critical of those that don’t follow doctor’s orders. Just a few months after my heat attack, I walked out of a support meeting shaking my head because a fellow member was talking about how she always “forgot” to take her meds. I just couldn’t understand that. Get a pillbox and take your meds at (or around) the same time every day! I never thought about some of the other reasons why people don’t take their meds; depression, forgetfullness, and cost.

    These reasons are why I am finishing my studies to become a Social Worker, because these are areas that a good Social Worker (if the patient has access to one) can help. When we can’t understand why a group of people do (or don’t do) something, this is a cultural competency issue and we need to educate ourselves and find the educational opportunities and create the interventions that will help. I hope that I am more understanding now and can help others be the best that they can be.

    Like

    • Carolyn Thomas May 30, 2016 at 11:46 am #

      Hello Eve – thanks so much for your honesty in admitting your (previous) lack of understanding. The ability to empathize with those who make choices that you can’t even imagine making is an important skill for any social worker dealing with real live patients and a variety of backgrounds, values, race, disabilities, education, income and other social determinants of health. As health policy lawyer-turned-chronically ill patient Erin Gilmer once reminded Silicon Valley tech hypesters: “Digital medication reminders are not what I need when I’m poor and can’t afford medicine.” The best way you can help your future clients is by not judging them as wrong or stupid. I’m hoping that by the time you finish your social work degree, you will not be so baffled by people who aren’t like you.

      Like

  4. The Accidental Amazon May 30, 2016 at 7:39 am #

    Amen to all this. Two issues that never seem to get enough attention are drug side effects/interactions, and drug costs, not to mention the dangerous craziness that is called polypharmacy, one of my biggest pet peeves in healthcare.

    Liked by 1 person

    • Carolyn Thomas May 30, 2016 at 11:33 am #

      Amen twice over! Thanks for your perspective here, Kathi. Drug-drug interactions are especially tricky (which is why I think we should all make friends with our local pharmacists for periodic medication reviews – these highly-trained professionals know far more about our meds than most MDs do). Speaking of polypharmacy (taking more drugs than are clinically necessary), have you seen this Bohemian Polypharmacy video spoof by the brilliant Dr. James McCormack at the University of British Columbia?

      Liked by 1 person

  5. Ralph Beckett MD May 29, 2016 at 5:56 pm #

    Nice blog about compliance. I wonder about two questions:
    1) When does non-compliance happen? I think it happens in the doctor’s office as the doctor is writing the prescription — the patient knows the chance they will take the medication is low.
    2) Is it true the greater number of medications a person takes the more likely each additional medication will not be helpful and will more likely be harmful? Probably.

    Liked by 1 person

    • Carolyn Thomas May 29, 2016 at 6:23 pm #

      Excellent questions, Dr. B – I’d agree with your #2 (having recently sat vigil at a friend’s bedside, 6 weeks in hospital with a near fatal drug-drug interaction after being prescribed a number of commonly prescribed meds).

      But with #1, I’ve had the experience personally of getting a prescription filled, starting it, and then finding the side effects were so distressing that I could not continue (but had genuinely planned to “comply” while in the doc’s office). Many of my readers also tell me they were planning to take their new meds – right up until they got to the pharmacy and saw the unaffordable price (their docs had no idea costs would even be an issue). Many answers for #1…

      Liked by 1 person

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