by Carolyn Thomas ♥ @HeartSisters
Dr. Lisa Rosenbaum writes in the New England Journal of Medicine about a friend who is worried about her father since two of his sisters have recently died following strokes. She asks her friend:
“Is he on aspirin?”
“Oh, heavens, no,” the friend replies. “My parents are totally against taking any medications.”
“But why?”
“They don’t believe in them.”
Curious about what she calls this instinctive non-belief, a commonly observed reluctance to take the medications their physicians recommend (aka non-compliance or the slightly less patronizing non-adherence), Dr. Rosenbaum wanted to understand how patients feel about taking cardiac medications. The consequences of not taking one’s meds can be deadly, yet almost half of all heart patients are famously reluctant to do so.(1) Dr. Rosenbaum, a cardiologist at Boston’s Brigham and Women’s Hospital, wondered: Are there emotional barriers? Where do they come from? Can we find better ways of increasing medication adherence if we understand these barriers?*
So she interviewed patients who’d had a myocardial infarction (heart attack) – first at the time of the initial cardiac event, and again months later. Their answers fell into five distinct themes that might be surprising to doctors feeling frustrated by their non-compliant patients.
First, it’s important to remember that the focus here was NOT about how to get patients to do as they’re told, but (as I’ve written about here and here), how to understand why so many of us don’t take our meds.
(NOTE TO TECH START-UP TYPES: before you get too excited, the solution to non-compliance is NOT another of your beeping pillboxes, digital timers or app reminders!)
Missing from the patient interviews here are a number of commonly reported reasons for not taking/stopping prescribed meds, like experiencing significant side effects or being unable to afford the high cost of medications. (See also: Why Don’t Patients Take Their Meds as Prescribed?)
Yet here’s what I think is the most important part of what Dr. Rosenbaum has to say in her NEJM essay called Beyond Belief: How People Feel About Taking Medications for Heart Disease(2):
“Although we tend to view non-adherence as patients’ failure to know what’s good for them, learning about people’s feelings about medications has made me recognize that my ideas of good and bad were defined solely inmy terms.
“It’s our job (as physicians) to help patients live as long as possible free of complications of cardiovascular disease. Although most patients share that goal, we don’t always see the same pathways to get there. I want to believe that if patients knew what I know, they would take their medicine.
“What I’ve learned is that if I felt what they feel, I’d understand why they don’t.“
So here’s what Dr. Rosenbaum learned about how some patients actually feel about taking their meds:
1. Risks and Aversion
- Some patients she interviewed expressed a pervasive sentiment of general distaste for taking any drugs – with statements like “I’ve never been a pill person” or “I don’t like taking them, period.” With these particular patients, concerns about drug side effects seemed focused less on whether any have actually already occurred and more on the possibility that they might occur in the future, or, as one patient said: “Why take medicine that could wreak havoc on my body?” Negative emotions make even small probabilities of risk loom larger.(3) Other studies have confirmed that if we feel negatively disposed toward something, any information we receive about potential risks leads us to discount potential benefits. Physicians, warns Dr. Rosenbaum, must do a far better job at communicating the benefits of a drug as well as understanding what beliefs contribute to refusing to take cardiac meds in the first place.(4)
2. Naturalism and Identity
- Medications remind people that they’re sick – and who wants to be sick? Study participants frequently expressed a preference for the “natural”, as one patient explained: “I don’t like medications — especially chemicals.”
- Prompt treatment combined with effective medications allows many heart attack survivors to quickly feel better and resume their healthy lives, but their very sense of well-being may convince them that medications are not necessary. In fact, Dr. Rosenbaum posed this question: “Has having a heart attack become too easy?” Or, as one patient told her: “Unlike the flu which knocks you down for a week or two, I was amazed how good I felt right after the heart attack.”
3. Visualizing Benefit
- The absence of perceived benefit is a well-documented reason for not taking prescribed medications. When a perceived benefit does seem intuitive, patients may be more likely to take their meds, as in the case of anti-platelet drugs (Plavix, Brilinta, Effient). Many heart patients interviewed did speak of the importance of taking these “blood thinners,” citing the visually intuitive clogged-pipe analogy. As one participant said simply, “Medications keep my blood flowing.” Perhaps this is why anti-platelet drugs have the highest adherence rates among heart patients (70%) compared to statins or other drugs (36-49%).(5) After my own heart attack, for example, I was sent home wearing a “Do Not Stop Plavix” medical alert bracelet. Nothing says “important” to a patient like telling the whole world you must NOT under any circumstances stop taking this new drug until your doctor says it’s okay.
- It might help us if our health care providers presented a visual demonstration of the consequences of untreated heart disease before hospital discharge. Research shows that fear of chronic illness often trumps fear of premature death.(6)
4. Avoiding Dependency
- Patients explained that relying on medications to control cholesterol or blood pressure can feel like they brought this on themselves, or that taking medications is a sign of weakness, a cop-out, or what Dr. Rosenbaum described as a “shameful dependence”. There was also a common expectation that they would one day be weaned from medications. One patient believed, for example, that once he lost weight, he could stop taking his meds, adding: “My goal really is to get rid of the medication in the next couple of months.” (See also: To Just Be a Person, and Not a Patient Anymore)
- Many patients described taking medications as “following orders” or “following rules.” This is ironically complicated by physicians’ emphasis on lifestyle changes if patients believe such changes can substitute for medications. Physicians might be able to address this misperception by reminding patients why both are necessary.
5. Emotional Intelligence
- Dr. Rosenbaum believes that although the term “medication compliance” has largely been replaced by the word “adherence” (7), she also believes that physicians have made “only a superficial semantic adjustment without shifting either our approach to prescribing or our reaction to patients who don’t take their medicine.” (See also: Why Patients Hate the C-Word)
In answer to the question “How can we foster both a sense of good health and an understanding of ongoing risk for cardiovascular disease?”, Dr. Rosenbaum confirms a call to action that I’ve been writing about for several years:
“One critical though strikingly under-used resource is Cardiac Rehabilitation. Rehabilitation programs create a social environment where one can simultaneously have cardiovascular disease and be healthy.
“But although Cardiac Rehabilitation is associated with reductions in mortality, fewer repeat myocardial infarctions, and psychological and social benefits, only 14 to 35% of people who survive myocardial infarction and about 30% of those who undergo coronary-artery bypass grafting participate.”(8)
What Dr. Rosenbaum doesn’t mention is a 2012 American Heart Association report published in the journal Circulation that accuses doctors themselves of being a significant obstacle to cardiac rehab participation. (See also: Failure To Refer: Why Are Doctors Ignoring Cardiac Rehab?)
The AHA report ever-so-gently spanked all physicians who aren’t referring their eligible patients to rehab like this:
“Given the well-documented benefits of participation in cardiac rehabilitation, it is surprising how few eligible patients are referred to rehab. A number of recent surveys have reported referral rates in the order of only 20%.”
Dr. Rosenbaum’s overall findings mirror the position of Dr. Victor Montori and his Mayo Clinic-based Minimally Disruptive Medicine initiative. He writes and speaks eloquently about the chronically ill patient’s “burden of treatment“ – which I believe is a significant yet under-appreciated factor in non-adherence, particularly for those living with more than one chronic illness diagnosis. But although Minimally Disruptive Medicine is groundbreaking, game-changing work, it faces a tough slog to win favour among the traditional hierarchy of doctor-patient relationships. UPDATE: please read Dr. Montori’s new book “Why We Revolt: A Patient Revolution for Careful and Kind Care“.
When I asked Dr. Montori if he’s optimistic that current medical practice will be able to change enough to incorporate the key components of minimally disruptive medicine, his response to me was:
“I do not think that change will come quietly.
“I am focused on a patient revolution led by patients, in partnership with health professionals, to make healthcare primarily about the welfare of patients.”
* © 2015 New England Journal of Medicine
(1) Ho PM, Bryson CL, Rumsfeld JS. Medication adherence: its importance in cardiovascular outcomes. Circulation 2009;119:3028-3035
(2) Lisa Rosenbaum, M.D. Beyond Belief — How People Feel about Taking Medications for Heart Disease. N Engl J Med 2015; 372:183-187January 8, 2015DOI: 10.1056/NEJMms1409015
(3) Loewenstein GF, Weber EU, Hsee CK, Welch N. Risk as feelings. Psychol Bull 2001;127:267-286
(4) Finucane M, Alhakami A, Slovic P, Johnson S. The affect heuristic in judgments of risks and benefits. J Behav Decis Making 2000;13:1-17
(5) Choudhry NK, Avorn J, Glynn RJ, et al. Full coverage for preventive medications after myocardial infarction. N Engl J Med 2011;365:2088-2097
(6) McAfee T, Davis KC, Alexander RL Jr, Pechacek TF, Bunnell R. Effect of the first federally funded US antismoking national media campaign. Lancet 2013;382:2003-2011
(7) Tilson HH. Adherence or compliance? Changes in terminology. Ann Pharmacother 2004;38:161-162
(8) Lown B. Social responsibility of physicians (Essay 29) (personal blog) (http://bernardlown.wordpress.com/2012/04/29/social-responsibility-of-physicians).
NOTE FROM CAROLYN: I wrote much more about cardiac medications that heart patients are expected to take 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 the JHUP code HTWN to save 30% off the list price).
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Q: Do any of the five themes discussed by Dr. Rosenbaum ring true for you?
See also:
Behaviour change: if it’s so ‘easy’, why do so many studies show it won’t last?
Why don’t patients take their meds as prescribed?
Confessions of a non-compliant patient
Women and statins: evidence-based medicine or wishful thinking?
When the elephant in the room has no smartphone
Why don’t patients listen to doctors’ heart-healthy advice?
“To just be a person, and not a patient anymore”
What you need to know about your heart medications
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Heart Sisters 
Exactly three months ago today, I had a severe heart attack. One artery was 100% occluded, one was 98%, and two more at 50%. I had two stents placed in the most severe of the clogged arteries. I am now on aspirin, Brilinta, a statin, Coreg, and lisinopril. These meds are the reason I am still here.
I have a husband, four children and my first grandchild due this June. I want to stick around for awhile, so I will do what is necessary to do so. I have always worked out and have always been pretty healthy. I refused to take meds for my high cholesterol thinking I could just watch my diet and it would just work its way out. Not so. It was a combination of stress and cholesterol that caused my heart attack, two weeks before my daughter’s wedding. I’m still in my 50’s, so I heard a lot of “you’re so young”, etc.
I am so fortunate that I survived, especially since I had symptoms the previous night and made a reluctant visit to the ER, where the EKG showed negative findings. These symptoms seemed worse to me than the symptoms I had when I returned the next morning. EKG’s sometimes don’t pick up irregularities, which must have happened the night before. It actually took a total of three to confirm, and then a CODE STEMI was put into place.
Yes, I am very fortunate to be here.
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Thanks for sharing your story here, Susan. You are indeed fortunate for many reasons – including your decision to return to Emergency following negative tests. EKGs, stress tests and other cardiac diagnostic tests that have been researched and developed on (white, middle-aged) men do sometimes miss women’s heart issues. I too have a brand new grandbaby and I can tell you, as one of my readers wrote: “a baby is better for your heart than anything your cardiologist could prescribe!“
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Great post. I wish it could be read by lots of doctors, because there is so much to be gained when we as clinicians better understand our patients, and how we can help.
Also, Dr. Montori’s quote at the end really resonated with me, thanks for sharing it!
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Thanks so much, Dr. K. I’d love to have Dr. Rosenbaum’s findings considered as required reading in med school. And I’m such a fan of what Dr. Montori and his Minimally Disruptive Medicine team are doing!
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Reblogged this on Nurse's Links to Resources and commented:
Must read from Carolyn Thomas’ Heart Sisters
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I most identify with Risk Aversion and Absence of Benefit. But please, hear me out. Sometimes the docs are just doing cardiology-by-the-numbers with their prescription pads.
After my father’s heart stopped, his cardiologist (also sailing buddy) prescribed anti-hypertension meds, which my father took dutifully. But my father didn’t have hypertension. In fact, he famously said, “I never have high blood pressure. I just give it to other people.” The meds gave him intermittent bouts of such low blood pressure that he passed out, or “had spells.” Finally my mother (RN Class of 1950) made the connection, went along to his appointment, demanded to know why he was taking these things, and then threw a fit. Meds stopped. “Spells” stopped.
After my EKG seemed to read CRISIS but my emergency angioplasty showed relatively clear arteries, a series of cardiologists rejected my suggested diagnosis – Apical Hypertrophic Cardiomyopathy (AHCM) – and recommended beta-blockers and duly noted my refusal to take them. I was unconvinced of the benefit. I did take statins for protracted periods, several times, but never was convinced of the science concerning cholesterol either, and stopped taking them.
Over 6 years later, another cardiologist confirms that I’ve had AHCM all along, and I am referred to the HMO’s HCM specialist. And she tells me that people like me should NEVER take beta-blockers – that, for us, they are even dangerous! On the statins, I’m still not convinced and ever more research backs me up.
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Yoiks – both your Dad’s story and your own are frightening! Your Dad’s story reminds me of a virtually identical experience with an elderly friend who was taken to Emerg by ambulance a number of times following serious falls caused by “fainting”. He underwent all kinds of tests/brain scans looking for neurological reasons for his increasingly common fainting episodes. Not one of his many doctors thought that his (very low) BP was reason enough to take him off even one of his THREE different BP meds – until a family member specifically asked his family doc to do so.
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I fall under every single category Dr. Rosenbaum outlined!
My particular trajectory is that when I am desperate for relief for EXPERIENCED symptoms or fearful of what may happen if I don’t take the meds, I will take anything and am very compliant. Then I lose my fear of future episodes and focus on wondering what the long-term impact is on my body that science does not yet know about.
Fear, unfortunately, is still my biggest motivator to take or not take my meds.
I’ve often said that a doctor who can instill “fear” in me is what I need to stay the course. The good news and the bad news is my doctors don’t have that kind of personality or approach.
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You win the ‘All Category’ Prize, Judy-Judith! I’m reminded by your comment of why over half of all patients diagnosed with high blood pressure stop eventually taking their anti-hypertensive meds: it’s because if we take BP medications faithfully, we’ll feel fine. And if we STOP taking our meds, we’ll feel fine, too (right up until we have that stroke!)
But when we are “desperate for relief” and experiencing severe headache or nausea or debilitating joint pain, we’ll take whatever we possibly can as long as we need to in order to relieve distressing symptoms. (And that’s why I bless the name of Italian chemist Ascanio Sobrero who first made nitroglycerin back in 1847…)
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You know, Carolyn, my experience has made me also hesitant to use my thinking brain about meds . . . To take meds religiously and then take other meds to counter side effects only to discover that none of it was necessary and some of it was hurtful . . . it will be a long time before I trust flawed white coats ahead of my own flawed assessment.
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I hear ya! One’s personal experience with misdiagnoses (or missed diagnoses) can forever alter trust in that prescription pad!
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Great article, Carolyn – and I think many of us can relate to this. A lot of people believe that not taking any type of medication, especially as they get older, is a badge of honor. Of course, it is – but if we really need medication, we need to rethink that. No one likes to take a pile of pills. For myself, I came very close to dying and although I wish I didn’t have to take so many meds, I am glad they are available now. I don’t think people realize how many of us would not be here at all without them.
Another reason I have heard for people not taking their medication is the fact they can’t tolerate them. That is a huge problem! If the medication that is supposed to make you feel better makes you feel sick, it is very difficult for the person to stick with it.
And I often hear people talk about “Big Pharma” and how they believe that many of these drugs are just moneymaking ploys on the part of the pharmaceutical companies. I agree that the system is flawed and there have been many studies showing that doctors have pushed certain medications for their own financial benefit (like antidepressants).
Again, I think we have to step back and look at the statistics that show how many more people are surviving and going back to their lives on these medications. Yes, they can cause other problems – but the best we can do is to find a doctor we trust and follow their advice. (And if we don’t feel comfortable with the doctor we have, we need to look for one we are comfortable with!) It’s not easy, especially when it’s all new to us and there are so many varying opinions out there.
Ultimately, we all have to make our own decisions. But hopefully we will make them based on facts and not some preconceived notion.
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So many good points here, Bonnie – just as there are so many individual reasons that individual patients do not take their meds as prescribed. I’ve become interested lately in the emerging concerns about “polypharmacy” in older patients who take fistfuls of drugs. Some studies suggest that over 1/4 of seniors are being prescribed an astonishing 10 or more medications per week – many with debilitating side effects that mean patients need to take even more drugs to counter the side effects (as mentioned in another reader’s comment below). Polypharmacy is associated with increased risks of falls, adverse drug events, hospital admissions, and death in older patients. There’s now in fact a growing movement among physicians and pharmacists towards “de-prescribing” meds in their older patients.
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Knowing my fight with refusing to take statins, my Cardiology NP is beside herself. She tells me “You MUST be on a statin.” I say “But the muscle pain does not allow me to exercise and work without taking narcotics. I am in pain all the time.”
“Non-adherence”, “Non-compliance” it doesn’t matter what you call it, the patient is the expert on how the medications make them feel, how much they have to pay after insurance is done (or not having good prescription insurance).
Yep, I am a cardiac patient BUT I am also a diabetic with high blood pressure, weight problems and a nurse who is still in the workforce. Medications have to fit how I want to live my life and I really don’t like chasing side effects with more medications, especially ones that can stop my career in the case of narcotics.
Thanks Carolyn!
Elizabeth Y. RN, BSN
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Thank you for sharing your perspective, Elizabeth. What you are perfectly describing is what Dr. Victor Montori and his Mayo-based team call “Minimally Disruptive Medicine”. As I quoted Dr. M here:
“Medical practice guideline parameters have been designed on a disease-by-disease basis. They work when you have only one or two conditions. But once you have multiple conditions, these parameters start being difficult and overwhelming to patients.
“But what if these quality parameters end up causing more harm to the patient, and the patient realizes this and starts cutting back even more?
“What makes more sense is if parameters became more patient-centered. Define quality through the patient’s eyes, and not through the disease standpoint.”
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After her first (HA) my partner was three months into back to work strict medication compliance and then her dentist about to do a procedure told her to stop the blood thinners (Plavix & Aspirin) so said so done.
Obeying the (male) white coat! Then before the procedure bang! Angina (non regular) In the hospital and out in ten days.
Then her cardiologist plans an angiogram and tells her ‘stop the blood thinners’ but then he has an accident and misses the angiogram and bam Angina! In the hospital where the angiogram shows multiple blockages; by-pass x 3 is the response.
In her case she complied with the white coats and suffered the consequences!
A month on post-op, all is better (even these pesky little balls are jumping)!
BUT strict compliance with meds vital to her success!!
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Hi Old Battle – thanks so much for raising this important (and often confusing) issue. When heart patients on dual antiplatelet therapy require surgery or certain invasive diagnostic procedures, physicians need to determine whether or not to discontinue antiplatelet therapy to reduce bleeding risk. But as the editor-in-chief of the dental journal Anaesthesia Progress warned in a report called CAUTION: MAINTAIN ANTI-PLATELET THERAPY IN PATIENTS WITH CORONARY ARTERY STENTS (yes, all in CAPS!): “Premature discontinuation of dual therapy (e.g. aspirin & Plavix) is the single greatest predictor of stent thrombosis.” Patients must have thorough discussions on risks/benefits with their physicians before stopping dual antiplatelet therapy. Here’s a good general overview from the European Society of Cardiology.
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These ring quite true… but the last one concerning burden of treatment is the truest for me.
As a person with multiple issues, keeping track of a multitude of meds, always having refills on time, setting an alarm to remember to take off my patch, and carrying potassium with me everywhere just gets tiring and annoying.
Then, having the meds “fighting amongst themselves” is no picnic. Taking diltiazem for MVD, which caused edema in feet and hands, which caused the need for a diuretic, which then depletes potassium, which in turn created the need for potassium supplementation. I’m having to take 9 potassium pills each day on top of the other meds for other issues.
I think I take about 30 pills a day including supplements. Ugh. It’s just too much!
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Thanks for reinforcing such an important point – it IS too much. Are physicians even aware of this burden when they review a patient’s medication list?
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