by Carolyn Thomas ♥ @HeartSisters
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.
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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?
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See also:
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!)
First, there was compliance. Then, adherence. Now, concordance!
Confessions of a non-compliant patient
Why don’t patients take their meds as prescribed?
Living with the burden of treatment (more about Dr. Victor Montori’s work)
Heart Sisters 
Since I take meds for bipolar disorder, what helps me remain compliant is reminding myself what life was like before meds. I also use pill boxes, automatic refills with text reminders, and set alarms on my phone as reminders.
I’m battling the decision as to whether or not to go on cholesterol medication since it can cause depression. I made an agreement with my provider to give me time to manage it without the RX before making a decision.
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Thanks so much for weighing in here, s.e. I have always suspected that meds which actually relieve pain/get rid of inflammation/address distressing symptoms as in your case have a far higher likelihood of being taken as directed because we are very well aware of feeling very bad if we stop them.
But preventive drugs like statins or blood pressure-lowering meds are tricky: if we take them, we’ll feel fine. If we stop taking them, we’ll still feel fine. Mayo Clinic has an interesting statin decision-making tool for patients you might find useful, and Dr. James MacCormack at the University of British Columbia has created a good risk calculator too that might help in your ‘battle’ to decide. Best of luck to you…
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Thank you for the resources.
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Wow, I must contrast a person like Isabella who commented here who is extremely well-informed both about treatments and about her own personal health, with a person who is like my mother-in-law — very intelligent yet ignorant, not educated (didn’t finish high school), yet who thinks she knows it all, and you can’t tell her what to do. She is proud and knows better than everyone else, including the doctors. She is also 77 and a real character, old enough to feel she should not have to listen to what you say.
You just can’t tell her anything. My poor husband shudders when she buys a new cell phone — it “never works right” — so she gets a new one, when the issue is she is not patient enough to learn how to work it. And she takes her medications to an extent, but I don’t see her as a compliant patient at all.
It would seem to me that someone like Mom is at the polar opposite extreme from someone like Isabella who is very well educated and in a very good position to make her own healthcare choices. Is there a bell curve? Is the person who is in the middle, at the top of the bell curve, the one who is most likely to be compliant? Do doctors like those patients best?
How much has the internet and having tons of ready information at our fingertips influenced this situation? There are so many terrible quack websites out there promising so much with “medications” that are way overpriced and that don’t actually help you. Even AARP links them on their website — something that really irritates me.
I myself often forget to take my meds but I guess I’m only human — when routines change it slips my mind. I went through a period of time where I did have problems with one that was prescribed (not a heart medication) that had a possible side effect of nausea. I didn’t get that, but for some reason I began gagging on all my pills while taking it. I finally stopped taking it and this went away. It was very upsetting to feel like I couldn’t take my medications without this happening. It was completely psychological, I’m sure.
Far worse is not exercising when I know how much of a benefit that will be. I wish I knew why I avoid this. I just don’t make myself do it most of the time even though it costs nothing and I know better, having been through rehab twice. My cardiologist is going to yell at me next week at my check up and I don’t know what to tell her. I don’t mean to be non-compliant. I just hate doing it!
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Thanks for this, Meghan. I’m not a physician, but my guess would be that your bell curve example is likely the one easiest for physicians to get along with – not as keen as Isabella who looks up journal articles and does lots of her own homework, yet not as defiant as you mother-in-law.
Exercise is another great example of something that all heart patients know they SHOULD be doing. The trick is, I believe, to find the kind of exercise you like and WILL keep up because it’s fun for you, not because somebody told you that you SHOULD be doing it. For example, my days of working out in the gym are over ever since I finally came to the conclusion that I *hate* going to the gym and always have, which is why I used to procrastinate and make excuses and “miss” my sessions and then feel bad about how I ‘should’ go. But when I discovered Zumba classes, it was just dancing and fun! Maybe you just haven’t found your exercise option yet. Hope your cardiologist doesn’t actually yell at you (that’s not very motivational!)
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Hi Carolyn,
I am very compliant with the meds I can tolerate, however I have refused to continue with drugs that make me feel so awful that life isn’t worth living.
After a SCAD 18 months ago I was treated medically with all the usual drugs for stented heart patients (I didn’t have a stent inserted). I have always had great cholesterol results, not overweight and pretty fit. I have never smoked and only a moderate intake of alcohol.
The dual antiplatelet therapy (Plavix and aspirin) nearly killed me and the statin gave me terrible muscle problems. I stuck it out for two months before I stopped the Plavix and statin. I went to my cardiologist with the Mayo protocols for non-stented SCAD patients explaining why I had stopped the meds with the blessing of my GP.
He accused me of giving up too easily and told me I didn’t need to see him again! I told him I felt so much better two weeks after I stopped taking the meds and that I would rather die than feel terrible taking those meds for life! He didn’t offer me alternatives or discussion as to why I had these reactions.
My next specialist told me I should never have been on those drugs! He diagnosed me with Microvascular disease and told me to try Verapamil. He said see how you go, some people can’t tolerate the side effects of calcium channel blockers. He thought I was drug sensitive and he was right! After 2 months I had to give them away. I really wanted them to work! He said it’s about how you feel and if something makes you feel terrible you will be stressed out. I’m now just taking the lowest dose of olmesartan which sometimes lowers my blood pressure a bit too much and I’m trying to keep stress levels down. I can exercise with a little help from nitro spray and I’m feeling better than I have in a while. The difference having an understanding specialist is incredible. Quality of life is so important!
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Hi Cathran – Somehow, I don’t think that accusing a heart patient of “giving up too easily” qualifies as an effective motivation tool to encourage behaviour change. What a relief it must have been to meet the second one! I hope your improved quality of life continues…
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Hi Carolyn, As usual you are on point in bringing to the forefront the patient/doctor relationships that could use more empathy from physicians. I must admit, I too have often forgotten to take my meds, and I’ve been on them for 20 years!
However, I read an article by Jane E. Brody, New York Times in April 2017, which brought another view to this conversation. Namely, the statistics when patients do not take their meds – I posted about it on my blog. Patients also need to understand (I included) what could happen in the event they don’t adhere to their med routine.
Thanks!
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Thanks for that link, Judith. I sometimes “forget” to take my meds whenever I’m struck with a bad cold. I’m often gobsmacked once I’m up and around again to check my little days-of-the-week pillbox to discover that I’ve missed 2 or 3 straight days of meds!
You’re so right: the consequences of not taking meds as prescribed can be dangerous, even fatal. That NYT article mentions that 1/3 of kidney transplant patients stop taking their anti-rejection drugs – this sounds insane (until we try to understand WHY they do this). I met a man once, for example, who told me he had started smoking again on the one-year anniversary of his massive heart attack. I looked at him like he’d sprouted two heads! I couldn’t believe what I was hearing! But that was before I’d learned about the ‘burden of treatment‘ that Dr. Montori talks about. Sometimes, as crazy as it sounds to others who cannot comprehend, they just want to be a person and not a patient anymore…. I get that now. Very complex stuff..
PS Was that Jane E. Brody in the Times, or Jane W. Brody? 😉
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That was Jane E Brody in the Times.
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I am compliant with meds…a whole box full….that I take three times a day. With nitro and rescue inhalers as well as EpiPens should they be needed. I take meds because I like to feel reasonable….in other words, breathing is nice and lack of chest pain nicer and functioning sort of normal is the best.
As brother used to say….I am a goody two shoes.
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Oh Sue! You may be a goody two shoes, but you’re a goody two shoes who can breathe and function without chest pain. It’s all good! I suspect that meds that address a specific debilitating symptom (pain, shortness of breath, nausea, etc) are more predictably taken promptly as directed. But drugs that are prescribed to help prevent some far off possible bad outcome that may or may not ever happen (high blood pressure, stroke, heart attack) are much trickier…
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Just a comment on two studies I’ve read:
The first is on medications. We have all heard of studies in which 1 group gets the medication while the other gets the placebo. In this study, everyone got the placebo – one group was given the “meds” and told to come back if they needed to. With the second group, the doctor came and ACTUALLY SAT DOWN in the room with them, explained the problem, told them the name of the medication and what the expected outcome would be and asked them to come back in a week. Even though nobody was given medication, the group who were given TLC -proper unhurried communication – had remarkable improvement in the ‘symptoms’ they had experienced.
The 2nd study had to do with weight loss: first group given diet and exercises; the second group didn’t get either but were asked to come each week for a weigh in and short chat – not specifically weight-related. Surprise – over 6 months, the 2nd group lost more weight than the diet & exercise people.
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Sylvia! I’ve been doing it wrong all these years!! I’ve basically been on a diet since I was 13, losing and gaining the same 20 pounds for decades, but always using the old-fashioned diet and exercise method!! I must look up these intriguing studies…
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What has me being “compliant” regarding my meds is fear that I will drop dead the day I forget one!! Also, I am a “good girl” and want all A’s on my report card.
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Hello Pauline! I hope you get all As for being this good! 😉 Have you ever read my blog post about my 5-year old self, sick with some kind of childhood illness, for which Dr. Zaritsky, our family doc, made a house call? (Yes, that’s how old I am!) When I learned he was planning to give me a needle in my bare bum, I proceeded to punch him in the stomach. As a good little Catholic girl, I believed my Mum afterwards when she told me I was going straight to hell for that kind of non-compliance…
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Why not ask the patient how they can best be helped?
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Good idea, Dr. Anne!
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Hi Dr. Anne,
A lot of sick people are so befuddled with the chaos of grieving – when they don’t even realize they are grieving – that they can barely string words and thoughts together. This is one reason why so much is missed in communication. They simply are so focused on feeling bad that they don’t know what anyone can do to make them feel good.
Example, when caring for my mom with advanced dementia, she would get pretty agitated when the words and thoughts evaded her. A simple, “Words are over-rated. Lets go for a coffee” brought smiles and distractions. The minute she hit the car seat, she fell asleep and forgot that she forgot. It’s like doing a hard reboot on your computer. When she put up a stink on eating or taking pills, I simply said, “Well, whenever you are ready and get those pills into you…here are the adventures that are awaiting us today.” Got the pills and food into her and we were off on another adventure.
The tough part is that someone has to care enough to care for others when they need a wee bit of attention. Instead, it feels like everyone is so darned busy with their own life that no one is left watching those who need a helping hand.
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Those are powerful examples of dealing with dementia! “Caring enough to care for others’ is beautifully put. For people who are not necessarily ‘befuddled’ (what a great word that is!) but not taking their meds for a variety of other reasons, I’m reminded of one of my readers who could not afford to take her meds (her husband had recently lost his job – and health insurance coverage). She had decided to cut her pills in half, then into quarters, and then took the little pieces every other day instead of daily to make them last a bit longer. She wasn’t confused. She was making the best decision she knew how to make – except she had been too embarrassed to admit to her doctor that her meds were too expensive.
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That’s another reason many people go off their psych meds too, loss of insurance, unable to afford to see their doc, unable to afford rx’s. On forums I’m always letting people know about the programs many pharm companies have for free meds to help in such situations.
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I believe that ill people are grieving the loss of the privilege of good health (sound familiar, Carolyn?).
Part of that grieving is denial. One cannot deny being ill if they have to take meds for that illness. Chances are that they are also not eating well, sleeping well, not feeling well, bills are not paid on time, the house is dirty, etc. But these things are likely not visible to the doctor who also doesn’t make house calls. They observe a patient for ~10 minutes and make their opinion.
Most physicians and nurses have never actually walked in their patients shoes or have lost their privilege of good health. They do not know what they do not know. Yet, because of their certifications, they feel comfortable in holding rank and setting policy/opinion about how others “should” live.
Likewise, most patients have never experienced grieving before and may have not yet understood why they lack functionality – right down to remembering to take medicines that they have not yet accepted into their lives.
It is at this time that the patient needs the monitoring control (aka direct friendly oversight) to ensure that bills are paid, adequate rest/eating sleeping/bowel function and that medicine is taken. The medical community has made it a checklist. The patient needs to feel normal to be accepting of the change. They need someone who will have their back.
As Mary Poppins sang, “A spoonful of sugar makes the medicine go down…”. Pills are rewarded with fun companionship and the stability that companionship brings to their lives to help them adjust to the loss of the privilege of good health.
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Hi Anne – we are singing from the same songbook! I’m reminded of how far removed the medical profession has become from what Dr. Montori calls “the burden of treatment“, and how little the average doc likely knows about the lived experience of the patient sitting in the exam room. Grief and just wanting to be ‘a person, not a patient‘ are such under-appreciated aspects of living with chronic and progressive illness. Thanks for putting this so beautifully…
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It is a grieving process. And it’s hard to be in denial when you have to take meds 3x a day. It’s also a constant reminder that I am ill. It took a long time to make peace with it, and it is still a pill that is hard to swallow sometimes.
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Dear Carolyn,
Thank you for another great Sunday morning read.
Doctors advise us. Are some of them forgetting this? Sometimes it seems to me that doctors can (perhaps unwittingly) become agents of the pharmaceutical approach only to healthCARE.
When I read the British Medical Journal articles of 100 years ago I find a ‘functional approach to medicine and health care’. In other words, it was well accepted to support the patient with nutritional support and care. There is a whole new wave of physicians training in the functional medicine approach and it is this approach that I resonate with in the selection of my doctors and health care professionals. They prescribe ‘drugs’ as well, but integrate also nutritional support and lifestyle changes.
Reading (and referencing) Suzy Cohen’s book DRUG MUGGERS is key in how I follow or do not follow what my doctor prescribes/recommends. Suzy is an American pharmacist.
I also do my own research on Pub Med and read other medical journals and take courses on how in fact to read the research correctly as to the impact a medicine has or does not have.
The other bit I use in my decision making is I have genetic testing and also am aware of my family health history and so I use this is my decision making. For instance warfarin for someone with my own genetic predilection needs to be prescribed with care because my blood can become too thin and I have relatives who may have been given too many blood thinners.
I also have some methylation issues which affect the liver and the liver affects heart function and so I support myself with B vitamins and make lifestyle choices to support my heart.
So — in summary response to article today…I use a lot of tools in my decision-making: The main one being ‘self-care’ and ‘self-trust’ in league with me respecting and conversing with the doctors who advise me and help me/treat me.
Kind regards,
Isabella
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Thanks for this, Isabella. You seem like a well-informed, curious and self-confident person – ironically, precisely the type of patient that some physicians have the most trouble accepting! Someday, good docs will welcome fulsome conversations with smart patients.
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