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.”
“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 in my 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 20% off the list price).
Q: Do any of the five themes discussed by Dr. Rosenbaum ring true for you?