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.

And most recently, of course, there’s the optional “concordance“.

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

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.

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 eating healthy, quit smoking, exercise, and 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?   See also: “I’m just not a pill person” – and other annoying excuses

How many doctors 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 2008 industry trade paper warned:(1)

“  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

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