CAROLYN’S WARNING: this article contains a C-word that drives many chronically ill patients stark raving bonkers. Continue reading only if you can stomach the word “COMPLIANT”
Dr. Aaron E. Carroll wrote a compelling essay in the New York Times recently. (By the way, I’ve often wondered why so many people – mostly men, I’ve observed – insist on formally using a middle initial? Is it to differentiate them from all of the other Dr. Aaron Carrolls out there?)*
Dr. Aaron E. Carroll’s subject has intrigued me ever since 2008 when I was told in the CCU that, from now on, I needed to take this fistful of new cardiac meds – many of them every day for the rest of my natural life.
Pesky patients who, for whatever reason, do not follow doctors’ orders represent a perennial frustration in medicine. Sometimes the consequences of not being “compliant” (or “adherent”, the slightly less patronizing term) are brutal, so this decision not to can be deadly serious, accounting for two-thirds of medication-related hospital admissions. And more to the point, it begs the question of how to convince people to do what the doctor says they must (or, as some people – but not me – like to call it: “how to make non-compliant patients compliant”).
I’ve written about the C-word before (here, here, here and here, for example) – usually by way of putting my hand up politely just to remind experts that the magical solution to this C-word mystery is NOT a new beeping, flashing, digital pillbox – no matter what the tech startup hypemeisters of Silicon Valley keep insisting.
My own best guesses (there are several) at why we don’t do what we’re told were covered in “Why don’t patients take their meds as prescribed?“, in which I listed the reasons experts have already identified, plus a few of my own based on what my Heart Sisters blog readers are telling me.
I even disclosed my own non-compliance (and some of the reasons I believed were responsible) here in “Confessions of a non-compliant patient“.
In his fascinating Times article, Dr. Carroll describes a specific theory on what motivates us to change behaviors. It’s called behavioral economics, a field that earned a Nobel Prize in Economics for Richard Thaler. Many physicians, he adds, are turning to ideas from behavioral economics to see if a little “nudge” can also improve rates of taking medications as prescribed. According to this theory:
“People tend to do things, like donate organs, when it’s the default option as opposed to something they need to request. They tend to be less likely to miss appointments if you tell them how many other patients show up for theirs. They tend to be more likely to engage in preventive behaviors like using sunscreen if you focus on the benefits, not the harms.”
In his book Nudge: Improving Decisions About Health, Wealth, and Happiness co-written with Cass Sunstein, Thaler explained that a “nudge” is “not a mandate. Putting fruit at eye level counts as a nudge. Banning junk food does not.”
A study on 1,500 recent heart attack patients sought to replicate these findings. Here’s how the study was described by Dr. Carroll:
“The control group received the usual care. The other group received special electronic pill bottles that monitored patients’ use of medication. Those patients who took their drugs were entered into a lottery in which they had a 20 per cent chance to receive $5, and a one per cent chance to win $50 every day for a year.
“That’s not all. The lottery group members could also sign up to have a friend or family member automatically be notified if they didn’t take their pills so that they could receive social support. They were given access to special social work resources. There was even a staff engagement adviser whose specific duty was providing close monitoring and feedback, and who would remind patients about the importance of adherence.
This was what Dr. Carroll calls a “kitchen-sink approach” to ensure compliance involving:
- direct financial incentives
- social support nudges
- health care system resources
- significant clinical management
But all of it failed.
Despite these incentives to reinforce c-c-compliance, there was essentially no difference between the two groups.
Getting patients to change their behaviour is very hard, as Dr. Carroll reminds us.
“In the past, we’ve tried making drugs free to patients to get them to adhere to their medications and improve outcomes. That failed. We’ve tried lotteries (as in the study above) to nudge people to achieve better compliance. That failed.
“Maybe financial incentives, and behavioral economics in general, work better in public health than in more direct health care. There have been successes, after all, with respect to weight loss — although these seemed to disappear over time. We’ve also seen promise with respect to smoking cessation, although these come with caveats as well. Behavioral economics may offer us some fascinating theories to test in controlled trials, but we have a long way to go before we can assume it’s a cure for what ails patients.”
Many physicians are fed up with disobedient patients who refuse to follow instructions. But even non-physicians can be fairly intolerant of the non-compliant. This, for example, from one Leo Kretzner in San Dimas, California, who offered this finger-wagging lecturette to non-compliant Times readers in response to Dr. Carroll’s post (CAROLYN’S WARNING: there is precious little “due respect” in evidence here):
With all due respect to the whirlwind of life’s complications that may cause a person to forget to take their medicine; and with all due respect to side effects some meds may cause; and all due respect to whatever else is the problem…
“It’s very hard to be sympathetic to patients who, for whatever reason, do not take the medicines they’ve been prescribed. They’re being given a way out or a way to lessen the symptoms of their conditions, and essentially batting away the helping hand.
“Why don’t doctors with non-compliant patients threaten them with, and then follow through on, expelling said patients from their care?? If you’ve already come to me for help, and I help you and tell you what you further need to do, but you don’t do it… Do NOT come back to me for more help. I already tried to help you but you won’t help yourself, so it’s time for you to get out of my office until you’re ready to follow directions. I guess it’s called ‘tough love.’ Is there something that legally prevents doctors from using this approach??”
Many apparently agree with Leo’s no-nonsense lack of awareness of the many complicated reasons for non-compliance. In Dr. Victor Montori’s profoundly important book Why We Revolt, he reminds us that many clinicians “see the care of non-compliant patients as a money-losing, risky and unrewarding proposition”, adding:
“Non-compliance is one of the leading causes that clinicians and healthcare companies cite for firing patients.
“In this sea of impotence and incompetence, we assume non-compliant patients need more education, that their inability to execute instructions is surely the result of ignorance. Education is helpful when lack of expertise in self-care means that regimens can only be implemented when prescribed, rather than shaped to fit within life’s routines. This kind of practical wisdom is often found in other expert patients, not in the the class or in the bulleted facts of the educational pamphlet.
“Others may think non-compliant patients need motivation, to change their behaviour, or to become ’empowered’ or ‘activated’. Incentives and penalties will ‘ensure people take responsibility for their lives.’ These tactics of education and motivation are frustratingly unhelpful for most overwhelmed patients. It is as if we keep screaming directions to the lost tourist in a language they still cannot understand.”
Dr. Montori instead suggests that these patients (who are often diligent and caring parents, employees of the month at the two jobs they must keep, and active citizen advocates for their neighbourhoods) do not need activation, empowerment, more training, financial incentives, or punishments.
“They don’t need to be threatened, called non-compliant, or fired. They need a break. They need care.”
A similar theme was expressed by another NYT response to Dr. Carroll’s essay. A reader named Kaleberg (apparently, one of my American neighbours to the south in Port Angeles, Washington – which, in the words of Sarah Palin, I can see from my house) wrote to the Times:
Taking medication to prevent a second heart attack is emotionally fraught. Every time you do it, you are reminded of your mortality. Some people face their fears, and some retreat into magical thinking. There are people who believe that problems can be solved and are willing to work toward solutions, but there are also people who throw up their hands and mutter that nothing makes a difference.
“This is who they are, and it’s reflected in their health, their finances, and their votes – or their lack of votes. It is possible to change people, but it requires massive intervention over years.
“Nudging won’t do it.”
*Dr. Aaron E. Carroll is a professor of pediatrics at Indiana University School of Medicine who blogs on health research and policy at The Incidental Economist and makes terrific videos at Healthcare Triage. Follow him on Twitter at @aaronecarroll. Dr. Victor Montori is an endocrinologist and researcher in the science of patient-centred care at Mayo Clinic, the author of Why We Revolt, and the founder of the non-profit called The Patient Revolution, dedicated to advancing careful and kind patient care for all. Follow him on Twitter at @vmontori.
NOTE FROM CAROLYN: I wrote much more about how we adapt to going from being a “person” to becoming a patient 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 their code HTWN to save 30% off the list price.
Q: What has influenced your decision to take prescribed meds – or not?
Don’t Nudge Me: The Limits of Behavior Economics in Medicine (Dr. Aaron E. Carroll’s essay in the New York Times; yes, THAT Dr. Aaron E. Carroll!)
Living with the burden of treatment (more about Dr. Victor Montori’s work)