by Carolyn Thomas ♥ @HeartSisters
Compliant is one of those words that makes my skin crawl. It’s the word that our doctors use to describe good patients who take their prescribed medications exactly as ordered. The Teenage Cancer Trust’s Simon Davies in the U.K. once described the C-word (and its ever-so-slightly less patronizing alternative adherent) as words that “sound like they have punishment at the end of them.”
But for most physicians, both words mean the same thing: a serious health care issue. That’s because when patients refuse or stop taking the medicine their doctors have prescribed to help manage a serious medical condition, the consequences are often devastating. From organ transplant recipients to those living with chronic diagnoses like diabetes, heart disease, epilepsy, HIV or Hepatitis C, those consequences can be swift and sometimes even fatal.
Apparently, 20-30% of all drug prescriptions written for patients are never even filled at the pharmacy in the first place. That’s called primary non-compliance.
When physicians in a large medical clinic in Singapore noticed prescriptions they had just written tossed into the public litter bin, or crumpled up and discarded on the sidewalk just outside their clinic door, for example, they became curious. Their subsequent study on primary non-compliance found that patients who were both under age 30 and being treated for an acute complaint were far more likely not to get their prescriptions filled.(1)
The World Health Organization (WHO) estimates that only 50% of people who do get their prescriptions filled at the pharmacy actually complete taking the full course of medication therapy just as prescribed. Doctors call this secondary non-compliance.
Here is the WHO list of top disease categories known for secondary non-compliance (those who start taking their meds but then stop abruptly, or don’t take the meds in the precise way they were prescribed – such as daily pills taken every other day, or taking half a tablet instead of one):
- diabetes non-compliance (up to 98% in North America) is the principal cause of complications related to diabetes including nerve damage and kidney failure
- hypertension (high blood pressure) non-compliance (93% in North America, 70% in the U.K.) is the main cause of uncontrolled hypertension-associated heart attack and stroke
- asthma non-compliance(28-70% worldwide) increases the risk of severe asthma attacks requiring hospitalization
Stats like these drive health care professionals crazy. Why don’t these patients take their meds? Some commonly held theories include:
- cost (see reader comments below on Prescription Assistance Programs)
- distressing side effects
- the “burden of treatment” (see anything written by Mayo Clinic’s Dr. Victor Montori for more on the burden of treatment and Minimally Disruptive Medicine
- the challenge of managing multiple prescriptions
- cultural issues
- worsening health
- uncertainty about the actual need for the medicine
Research published in the journal Hypertension reported additional reasons not mentioned in that list: the strongest predictor of non-adherence in taking blood pressure meds was the number of medications prescribed. Other predictors were being female and a younger age.(2)
Other research specifically looking at the impact of stress/distress on hospital re-admissions and adherence to discharge instructions (including medication and things like exercise or smoking cessation) has also found emotional states to be a meaningful factor.
I’m not a physician, but even I can tell you that people who feel bad about declining health are not great at taking every pill their doctors order. Other emotional factors identified have been confidence (or lack thereof), self-acceptance, optimism, happiness, self-reliance, trust, resistance to change, resistance to authority and motivation to improve.
An emotional state that’s rarely if ever acknowledged is simply the desire to no longer be a patient. See also: “To just be a person, and not a patient anymore”
Studies that have been done on drug compliance consistently show that there are also certain characteristics common to those who don’t follow doctors’ orders.
In one example, a Boston University study looked at why patients with high blood pressure stop taking the medications their doctors have prescribed.(3) Researchers found that patients who were younger and less active in their treatment decisions tended to be less adherent 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 like nurse-practitioners) tended to be even less likely to comply with doctor’s orders.
I suspect that those with high blood pressure may share another characteristic, however. If you are diagnosed with high blood pressure, and you take your hypertension meds faithfully every day, you will feel fine. And if you stop taking your meds, you will feel fine. Unlike acute or chronic pain conditions, hypertension – the so-called “silent killer” because it has few if any troubling symptoms while it’s wreaking havoc on your arteries – does not remind you (as pain tends to do) that you forgot to take your pills today.
Another theory to explain non-adherence in taking prescription meds maintains that for many acute complaints (like upper respiratory infections, for example) the illness is in fact self-limiting – so it goes away whether or not you’ve filled the prescription. The rather obvious conclusion of the doctors who undertook this study:
“For these patients, a more satisfactory consult may result if we ask if they wish to receive medication rather than assuming that they do.”
We know that several barriers have generally stood in the way of improving patients’ willingness to take their prescription meds. For starters, “expert” evidence relating adherence to clinical outcomes has often been inconclusive.
While many studies have identified a cause-and-effect link between not taking prescription meds and poor health outcomes, the validity of some of these studies has been questioned because the link between adherence and outcomes is thought to be muddied by a number of influences. For example, studies may:
1. be subject to publication bias— the tendency of authors to submit, and journals to publish, only studies with findings that suggest improvements from therapy.
2. focus on groups of patients for whom the drug or drug class is approved for marketing (people who generally show the greatest positive effect from the drug) and exclude patient groups for whom the drug might be ineffective or even harmful.
As a result, the health care profession has tended to view medication adherence as an intuitively important quality goal, but one with uncertain effects on total outcomes.
Take antidepressant drugs as an example of this development. A 10-year Dutch study found that 76% of patients with mild or moderate depression who did not take any antidepressant drugs recovered and never relapsed. Another five-year study of 9,500 Canadian patients in Alberta concluded that the drug-taking group were depressed on average for 19 weeks, but those who did not take antidepressants were depressed for only 11 weeks. And the World Health Organization has reported that non-medicated patients with depression enjoyed better overall health than those who took antidepressant drugs.
Despite years of research on the puzzling problem of non-adherence, there is apparently no magic bullet that will convince patients to take their medicine “as directed”. I don’t know what the answer is.
The usual bright ideas – for example, electronic reminders, phone apps, flashing pillboxes, or easier-to-open packaging – tend to improve adherence only in the short term, largely because a one-size-fits-all approach fails to address the underlying causes of the way patients behave.
Of course, many patients living with a chronic illness do manage to take their daily whack of pills, often for years on end. And ironically, that in itself can ultimately become a barrier to adherence. Personally, I hate taking my pills.
Let me repeat that:
“I hate taking my pills!“
Every day, day after day, they remind me of what we heart patients call the New Normal. Only those who are expected to take a fistful of pharmaceuticals each day for the rest of their natural lives can appreciate the psychologically exhausting effect of doing so. Add to this the reality of living with this condition and related symptoms, the need to keep track of ongoing medical appointments and treatments, and the full-time job of maintaining that healthy new lifestyle from now on. Only a keen desire to not die of a second heart attack (which, by the way, I have learned that my fistful of cardiac meds does not guarantee me) keeps my dedication to my daily meds routine intact and hopeful. See also: The New Country Called Heart Disease.
Meanwhile, we try to develop resourceful routines – such as putting our morning pills beside the coffee maker and our evening pills on the night stand. We store our pills in blister packs or helpfully colour-coded Days Of The Week segmented pill storage containers. We put post-it notes on our bathroom mirror and buy phone apps or high-tech beeping/flashing pill boxes that sound reminder alarms so annoyingly intrusive that we often tend to shut them off.
One of the threats to that nice little routine is what happens if the routine breaks down.
When a brutal cold recently knocked me flat for two miserable weeks, for example, I didn’t care about anything much except trying to breathe. I couldn’t face showering or reading the mail or even running a comb through my stringy hair for days on end. I was truly amazed to discover once I started feeling a bit better that several of my daily pill box segments had not been touched during the worst of my illness. How did that happen? Easy! That’s situational non-adherence for you. See also: Confessions of a non-compliant patient
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.”
Far more problematic for our doctors is the exact opposite of this type of occasional ooops-I-forgot rationale: what’s been identified as mindful non-adherence.
Dr. Steve Balt, editor-in-chief of the Carlat Psychiatry Report, explains mindful non-adherence in his description of a clinical tool called the PSAS: the Patient Self-Advocacy Scale.
This tool was developed back in 1999 at the University of Illinois to measure patient involvement in their health care decision-making. Initial studies focused on patients in the HIV-AIDS community (in organizations like ACT UP) and health care communication patterns among patients who described themselves as activists.
The PSAS includes three dimensions: 1. illness education, 2. assertiveness, and 3. that “potential for mindful non-adherence.”
This third category is defined as “a tendency to reject treatments” or “a willingness to be non-adherent when treatments fail to meet the patient’s expectations.” Statements on the PSAS tool assess this particular potential in a patient, including:
#10: “Sometimes I think I have a better grasp of what I need than my doctor does.”
#12: “I don’t always do what my physician or health care worker has asked me to do.”
Call me crazy, but my guess is that virtually all patients I know who are active in rare or chronic disease communities online would respond YES and YES to those survey statements.
Last summer, I learned of a study reported by a team of researchers from RAND, UCLA, and UC Davis about the contrast between what physicians believe and what they actually do when it comes to seeing if their patients are staying on track with their medications.(4) Here’s what they found:
- Although physicians uniformly felt responsible for assessing and promoting medication adherence, only a minority of them asked detailed questions about adherence.
- Although providers often checked medications a patient was taking, they rarely explicitly assessed adherence to these medications.
- Many physicians expressed discomfort about intruding into patients’ territory to detect non-adherence. In the office, they rarely asked about missed medication doses.
- Most cases of non-adherence detected during office visit were revealed through unprompted patient comments.
This sounds to me like doctors fully expect patients to be 100% compliant (despite years of published research warning that this is just not happening) – so much so that they’d rather just assume this to be the case unless patients volunteer their own non-compliance confessions!
This is also the case with me, In fact, neither my family doctor nor any of my specialists have ever once asked me a simple question about whether or not I’m taking my meds as directed each day. (Did I mention how much I hate taking my pills?)
Couple that reality with a perceived lack of interest from any health care providers. Some days I surprise even myself by continuing to take my meds under these circumstances, because I too seem to possess a certain “potential for mindful non-adherence.”
Speaking of a perceived lack of interest in one’s patients, physicians seem remarkably uninterested in the financial capacity of their patients to be able to afford to fill prescriptions. As the late attorney and longtime chronically ill patient Erin Gilmer wrote about those who believe non-compliance is a problem that just needs more technology thrown at it:
“I am frustrated by the prescriptions and ‘solutions’ offered. I don’t want an app to tell me how to track my fitness goals – but that’s what is popular.
“Digital medication reminders are not what I need when I’m poor and can’t afford medicine.”
I read an interesting analogy recently that helped me to understand the issue of non-compliance, particularly when patients are not involved with their physicians in meaningful treatment decision-making.
The analogy was this: imagine that your longtime financial planner hands you a piece of paper instructing you to set aside 20% of your income from now on in specific secure investments for your retirement fund, instructions based on her considerable experience and known expertise in such matters. You like your financial planner and respect her counsel, but for many reasons that she is unaware of, you decide not to do this. Later on, you show up for your regular portfolio review, at which time your advisor indignantly labels you “non-compliant” because you didn’t follow her sound investment advice.
This would never happen.
NOTE FROM CAROLYN: I wrote much more about this and other ways that heart patients adapt to their diagnoses in my book, A Woman’s Guide to Living with Heart Disease . You can ask for it at your local library or favourite 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 20% off the list price).
(1) T. W. Loong et al. “Primary Non-Compliance in Singapore Polyclinic.” Singapore Medical Journal. 1999; Vol 40(11).
(2) D. Hyman. “Does Polypharmacy Lead to Nonadherence or Nonadherence to Polypharmacy?” Hypertension. May 2017, 69:1017–1018.
(3) X. S. Ren et al. “Identifying patient and physician characteristics that affect compliance with antihypertensive medications.” Journal of Clinical Pharmacy and Therapeutics. Volume 27, Issue 1. 47–56, February 2002.
(4) Derjung M. Tarn et al. Provider Views About Responsibility for Medication Adherence and Content of Physician-Older Patient Discussions. Journal of the American Geriatrics Society, 2012; 60 (6): 1019
First, there was compliance. Then, adherence. Now, concordance!
When patients demand treatments that don’t work
Confessions of a non-compliant patient
“To just be a person, and not a patient anymore”
Living with the burden of treatment
When you fear being labelled a “difficult” patient
Patient engagement? How about doctor engagement?
Has industry co-opted patient engagement?
When the elephant in the room has no smartphone
Q: Why do you think so many of us don’t take our prescription medications?
23 thoughts on “Why don’t patients take their meds as prescribed?”
Generics don’t always work. Last year I went through a painful period when Celebrex went off patent, and the online pharmacy started sending me generics.
The first generic was actually manufactured by the original company. It worked.
The second, third, and fourth generics were useless – I reported them to the FDA. I went through an enormous amount of physical pain. Fortunately, I had written notes in my journal – I was able to pinpoint the problem.
Unfortunately, because the online pharmacy buys generics by price (which is why I had four generics from four different companies), and will not guarantee they will buy theirs from the company which made the first generic which worked, I now have to get the brand name Celebrex, with an EIGHT times higher copay. I still don’t understand why I have to pay for THEIR inability to guarantee a generic works.
“Only a keen desire to not die of a second heart attack (which, by the way, I have learned that my fistful of cardiac meds does not guarantee me.” I’m sitting here at nearly 1 AM, wondering what’s going on inside my body, deprived as it is of the diltiazem I’ve been taking for 43 days, that I stopped taking last night.
The reasons for my lack of compliance? The cardiologist is treating drugs as though any drug will do – there is no fine tuning – “You can stop taking it if you don’t want to take it” – and, as I recall, it was, as usual, me, who asked, “How about THIS drug”?
I have not had a heart attack – at least no one is saying that I have had one, although from the little I’ve been able to absorb, I’m not sure that’s true. I’ve asked, and I cannot get a straight answer – or any answer. I do not have angina, at least not anything recognizable to me. I have anterior septal wall hypokinesis, and a post-exercise EKG that had them saying, “Stent, stent, stent.” (My apology in repeating myself, as I’m sure I’ve posted this elsewhere). Minimally, cardiac catheterization. Consultation with cardiology interventionalist, who stated that having the catheterization, or angioplasty would not prevent a heart attack. However, I was told that it is likely that I have a severe anterior LAD blockage. Then I was told, “You’ve probably grown lateral vessels around the blockage and that’s why you’re still ok.” (I’m not ok. I’m going mad.)
Suddenly, four days ago, both the cardiologist and the interventionalist, are “in agreement” that the risks outweigh the benefits for a catheterization. That medication and those “lifestyle changes”, and good supervised cardiac rehabilitation should be sufficient. I haven’t yet been able to get this sudden change straight in my mind.
But, there’s the issue of the drugs. Calcium channel blocker? Beta blocker? Other? I’ve lost track of how many hours I’ve spent reading case studies and comparisons of these drugs. The only conclusion I’ve reached is that beta blockers could run interference better than other drugs. But am I qualified to make that determination? Absolutely not. But is my cardiologist? If he is, he hasn’t presented a rational argument about any medication, and he’s not going to.
All the cardiologists are interconnected in a vast system. To go to another cardiologist within the system, there’s little chance that any of them would risk countering what another cardiologist in this massive “group” had ordered, even if I tell them that it was me who asked about a particular drug and then was given it.
When I was given a prescription for statins, as I am mostly a solid, (and I still haven’t yet been taken any of them), it was me who asked for the required lab work for a baseline. If I haven’t, the cardiologist would not have ordered it. I was ‘impressed’ when I received a note telling me that I would have a repeat of this test after taking the statins for x amount of time.
Patient compliance with medication is far more complex than many suggest.
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Jane, your experience is distressing on many levels, but mostly because of your fear that even going to another cardiologist is futile because they’re all in the same ‘group’. My standard response to a story like yours is typically “FOR GOD’S SAKE, GET A SECOND OPINION!” That would still be my counsel – because what you need is a clear, comprehensive explanation of what’s happening and why each of your meds is being recommended.
There’s currently a move among many U.S. physicians towards “de-prescribing“, not MORE prescribing. It’s important to remember that there are indeed cardiac cases in which the location of a blocked coronary artery, for example, does mean that intervention is not the best medical decision – but you need to KNOW all the specific details of your own case that will make sense to YOU. You seem like an intelligent, articulate person – you of all people deserve to “get a straight answer” to every single question. Please see another doctor. This may well be a communication problem, more than your cardiac problems. Best of luck to you…
I have to believe that “Health Care” itself is another reason that people are not taking their medications. The rise in health care cost and the lack of prescription coverage is a major problem. In 2012, there were over 48 million people in the US who are without insurance and yet they are being asked to take expensive medications like Abilify which retails at over seven hundred dollars.
I also feel that some doctors are being forced to see more patients on a daily basis and they receive very little compensation from the insurance companies. It becomes impossible for a doctor to scan their patients records while important information is being missed. I have had to tell the doctor that the medication he prescribed should not have been prescribed since I was taking another drug which would cause a reaction, so I had to stop the medication until my next visit.
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** Hi Michael – cost is certainly a huge barrier for many patients, who try to adapt by taking daily pills only every other day, or taking half a tablet instead of one, or just not filling the prescription at all. Most drug companies do offer low- or no-cost drugs through Prescription Assistance Programs or by contacting the drug manufacturer’s website directly.
Carolyn, You seem to understand the problem and I have to agree that the patient assistance programs are wonderful programs and help millions of people.
I work with over fifteen hundred doctors on a monthly, bi-monthy bases and many of them offer some kind of assistance through manufacturer programs. In saying that, not everyone qualifies or the patients may receive a 3 month supply. That is not to say people should not apply for such programs because if they are approved then the outcome is very rewarding.
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You bring up another excellent point, Michael: doctors who prescribe expensive drugs should know with certainty whether or not their patients have even the remotest hope in hell of being able to afford them.
Oh hallelujah for this article (okay that may not be correct English but…) I’m so very with you hating all those compliance/adherence words.
I wonder if what I’ve found falls under ‘confidence’ – that is, even the seemingly simplest instructions can be confusing: let me know if you agree or have more to examples to add to 10 second med school
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Lovely to hear from you, Kathy. I’m a big fan of your work. And your 10-second med school point (‘take three times a day’) makes a good point. Besides, let’s face it, ordering patients to take anything three times a day (or four, or anything more than once or maybe twice) is like ordering them to skip at least one of those doses.
You may want to add structurally induced non-compliance to your list. This results from an overwhelming burden of treatment on patients with limited capacity to face it. The solution is called minimally disruptive medicine. More about this here:
Otherwise excellent and comprehensive piece.
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Hello Dr. Montori and thank you so much for your addition to my post. I urge my readers to visit the link you shared here to the website called Minimally Disruptive Medicine, too. I’ve just subscribed to this site, while wondering why I haven’t discovered it until today!
For example, your paper published in the Annals of Family Medicine last year (listed under Bibliography) focuses specifically on what you call the “treatment burden” for patients living with chronic heart failure, but it could also be describing the reality for me and most other heart patients I know, heart failure or not:
“Treatment burden in chronic heart failure includes the work of developing an understanding of treatments, interacting with others to organize care, attending appointments, taking medications, enacting lifestyle measures, and appraising treatments. Factors that patients reported as increasing treatment burden included too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals.”
Hallelujah! You have hit the nail right on the head.
I wanted to say something profound about agreeing with you but find I’m exhausted after reading all the reasons I might be a compliance problem.
I have, at times, fit into almost every category: mindful non-compliance, cost saving non-compliance, and sometimes just rebellion. But when I just simply forgot that I had run out of my Atorvastatin for 2 weeks because I had thrown the empty bottle away instead of sitting it aside to refill, I reached a new level of self-negligence and found my LDL at 189 (preferred below 70) in that short time. I was embarrassed to admit to my Dr. that it was just plain ‘not paying attention.’
At which point he asked some rather well directed dementia questions! Ha!
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Well, yes. There IS that “forgetting” reason . . .
Great, comprehensive piece! I find most people feel they experience unpleasant side effects, especially when they’re taking a handful of drugs. One friend of mine brought in every medication she was taking and asked that her doctor make a case for each and every one. He found several he was unaware of, a few that had been ordered by other physicians, and were no longer needed.
Yikes. Your friend’s is a remarkable story – I’ve heard that this can be particularly common among elderly patients, too.
Often times you just can’t afford the medication. Medicare patients go into the donut hole too quickly and can’t afford the medication. It has happened to me for the last three years. I want to take them but if you can’t pay for them then what else can you do? Drug companies are giving less samples to the physicians who try to help when they can.
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Sandy, you are so right. There are a number of programs that provide free or low-cost medications to those who qualify. For example, Partnership for Prescription Assistance is often a good place to start. Or try contacting the pharmaceutical company that makes a specific prescription drug – most offer low-income assistance programs. And always ask for lower-cost generic equivalents.
Carolyn I have tried using the low-income assistance program but if you have any type of coverage you don’t qualify.
Here in Canada, I was approved to get free meds through the Prescription Partnership program (applied directly to the drug company).
Canada must be different from the U.S. because I was turned down and my retirement check is $435.00 a month.
That is HORRIBLE!
Yes Carolyn it is horrible but there is nothing I can do about it. I am going without my heart medications this month. I hope I’m still here in January to start them back up. I fell into the “donut hole” as Medicare in the U.S. calls it in October so I’m doomed for two months.