Solving the puzzle of patient compliance

by Dennis Grace

I recently received a message from the Center for Connected Health.  I must admit the opening of the letter really put me off. It asked:

How do you solve the puzzle of patient compliance?

I responded to the gentleman who sent the invitation with:

Well, you might start by calling it something less offensive. Patient compliance? The phrase assumes “patient” as direct object rather than subject of participatory medicine. We are all patients. We are not comfortable in the third person. We don’t want to be compliant. We want to be connected, educated, empowered participants.

I went on to say that I expected more from the Center for Connected Health, and I cc’ed the response to ePatient Dave deBronkart, who asked if I’d seen his blog post |about the hospital’s side of compliance. I said I had not and promised to take a look.

Now, in defense of the individual who forwarded me the first message, he did reply with an apology for the insensitivity of his choice of words. He was, however, echoing sentiments to be addressed in the symposium. If you look at Dave’s blog post—especially at his comments—you’ll see just how far this horrible phrase has gone.  Dave quoted the following, but I just want to look at this Wikipedia entry for compliance (medicine) in a little more detail. It begins:

In medicine, compliance (also adherence or concordance) describes the degree to which a patient correctly follows medical advice. Most commonly, it refers to medication or drug compliance, but may also mean use of medical appliances such as compression stockings, chronic wound care, self-directed physiotherapy exercises, or attending counseling or other courses of therapy.

The entry goes on to explain that many prefer adherence or concordance because the problem is seen not as one of refusal to comply with orders but rather as a failure to stick to orders or a failure to come to agreement with the terms. Funny how the variations still blame the patient but remove any onus from the physician. It’s not that the patient doesn’t comply with the doctor’s orders; it’s that she doesn’t adhere to the regimen.You might argue that concordance fixes the problem, but look again. The Wikipedia writer clearly could only accept concordance as another way to obtain compliance:

Concordance also refers to a current UK NHS initiative to involve the patient in the treatment process to improve compliance.

In other words, it’s still the patients’ fault.

This whole compliance (medicine) article comes through to me as blame the patient. My first response, as a patient, is to be insulted that I’m the target. So, I analyze that problem.

Problem part one: the patient. Okay, you handed something (drugs, exercise plan, a diet, an orthotic) over to the patient, and the regimen was never completed; therefore, we should blame the patient. Why? Were the instructions clear and complete? Did they explain the rationale or just provide marching orders? Was it the correct regimen? Were any contingency plans included? Did the patient have any options at any point? Was the patient part of the process or just a vessel? All this blaming accomplishes is making more patients angry and disaffected. Worse than that, labeling us as non-compliant is patronizing. That is, it makes the doctors look just that much more patronizing. Lecture me like I’m a naughty child — yeah, that’ll convince me.

When I try changing the emphasis, however, I see that patient isn’t really the problem.

Problem part two: the blame. Changing one word (compliance to concordance) doesn’t change the approach here (blaming someone); it just shifts the blame from the patient to the patient/doctor partnership. I don’t want to just shift the blame—not to the partnership, the doctors, the nurses, the pharmacists, Big Business, or the Puritan Work Ethic. I don’t care who’s at fault. Blaming just makes someone look incompetent or stupid or belligerent. Fixing the blame doesn’t fix the problem.

Changing one word won’t change this from being a blame game. We need to change the entire approach to the issue of completing a regimen. Instead of discussing the negative implications, let’s stick to the positive. Can’t we just discuss the concept of completion of regimen and put the emphasis on doing it right? Here’s a simple example:

Completion of an antibiotic regimen dramatically increases the odds that we will wipe out the invading bacteria altogether by eliminating even bacteria that attempt to hide from the antibiotic effects by going dormant. Knowing that, how do we ensure that this is the correct regimen and that the regimen is completed satisfactorily?

I know I’m not likely to fix a decades-old problem with a simple paragraph, but I think this at least points the way. Maybe you can come up with something better.

Dennis Grace is co-founder of MedicalBillDog.com and blogs at The BillDog Blog.

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  • http://www.facebook.com/natacha.pires Natacha Pires

    Compliance to therapy can also be impeded by health insurance practices such as specialty tiers that shift costs to the consumer/patient and more often than not, it forces the consumer/patient to choose between taking medication to get better and his/her daily basic living expenses. Furthermore, this impacts the consumer’s health outcome, and it raises health care costs in general.

  • Finn

    I strongly prefer “adherence” myself. Adherent = following the treatment plan; nonadherent = not following the treatment plan.

    But for blaming the patient, even the patronizing “compliant” can’t hold a candle to the standard medical phrase “patient failed treatment.” The patient didn’t fail a damned thing; the treatment failed.

  • pcp

    Every patient is a thinking individual with unique responses in a given situation. No physician or other entity has the power to force every patient to act in the exact same way. Calling “patient compliance” a problem is insulting to both patients and doctors.

  • http://boxcuttersinc.wordpress.com Michael Wong

    I like this definition by Dr. Melissa Hunt
    Associate Director, Clinical Training, University of Pennsylvania — “Adherence is not simply blind compliance. Adherence is an active and voluntary choice by the patient”

  • http://e-patients.net e-Patient Dave

    Thanks to Dennis for citing my post.

    This subject has nagged at me. I’d like to propose an even more-different view: instead of whether somebody stuck to a plan (and whether someone else got them to do it), as if it’s an assignment, why not view it as achievement? After all, isn’t the purpose to achieve better health?

    Increasingly I suspect a core problem in all our attempts to improve health is that we think it’s something the professional does to the patient, or fails to do. Sure, professionals do great things – mine diagnosed me, “surgeried” me, screwed my leg back together, killed my nasty tumors – but my primary has no control over whether I get off my butt, take my meds, etc.

    What could be possible if we viewed health improvements as achievements that we work on together?

  • http://e-patients.net e-Patient Dave

    (Pardon the omitted dash; I meant “isn’t that the purpose – to achieve better health?”)

  • http://e-patients.net e-Patient Dave

    One more thing – here’s a useful observation from Lancet:

    “Physicians often complain that patients are non-compliant; they do not do what they are told. This resistance perplexes doctors. They can write prescriptions for patients, but they cannot control what the patients do with the prescriptions. … To cajole or threaten has little effect. Rapport and education have likewise had little impact. Patients continue to disobey. …

    “[I]n my view it may be more appropriate to focus on the problem that may well be the cause … the assumption that physicians are in charge of their patients and are therefore entitled to make decisions. … The very word compliance suggests submission to a higher authority… Suggested alternatives, such as cooperation and concordance, connote a less overt paternalism but continue to suggest that the patient is the one who must yield.”

    The paper is “The Patient’s Right to Decide,” by Warner Slack MD. It was published in 1977. ( Lancet 1977; 2(8031):240.)

    My post about it is here.

    • gzuckier

      Interesting point. Would it be equally valid for patients to complain that their doctor is not compliant when he or she fails to address the patient’s complaint in a way the patient feels is sufficient? Offhand, I’d say that wouldn’t become a popular concept.

      • http://e-patients.net e-Patient Dave

        Nice point, GZuckier.:-) Personally, I just think “compliant” has no place in a partnership relationship with shared goals and responsibilities.

        If you want to take 5-10 minutes to read a long reflection on providers listening (and I mean management at least as much as docs), here’s a post from May. I’d just been to several conferences and visited a new cancer center, and was newly aware of challenges docs face plus a taste of excellence in how it can be.

  • devil’s advocate

    If a patient already knows at the time of the prescription that he will not take a particular medication or do a particular procedure, shouldn’t he let the doctor know so there can be a discussion?
    If a patient has the intention to take the medication correctly but develops difficulties (forgot dosing times, has side effects), shouldn’t he call the doctor’s office to let him know?
    I spend a good amount of time explaining why a medication is needed, how it works, how to take it, and what the typical side effects are. If there are additional reasons why a patient might choose not to take it as prescribed, I expect him to bring it up. If the patient comes back for a followup visit and says, “Sorry, doc, I forgot to do my labs, the form is sitting in my glove compartment,” who should I blame?

  • e-Patient Dave

    Advocage, I couldn’t agree more – in any kind of partnership with a shared goal, it’s cuckoo for either party to covertly think “not gonna happen” and not say so.

    Of course it raises the question “Then why did you ask for advice?”

  • http://www.littlepatientbigdoctor.com Haleh Rabizadeh Resnick

    The “compliance” terminology would be different if doctors viewed themselves as partners with their patients, which is what I advocate in Little Patient Big Doctor. Then no one would be offended and we wouldn’t have to play the semantics game. We could simply then have the very important conversation of where and why a break down exists when an agreed upon course of action is set but not followed.

  • http://louisianaqio.eqhs.org Lisa Stansbury

    Health coaching seems to build on patients’ sovereignty over their diagnosis and they learn to interact with the health care system with more power. As a Medicare QIO, we’ve tried it for reducing hospital readmissions in a local Medicare population and it’s worked well.

    • http://e-patients.net e-Patient Dave

      Lisa, I’d love to know more about what you did and your results – do you have a blog post or article about it?

  • http://boxcuttersinc.wordpress.com Michael Wong

    We have utilized adherence patients in dialogue with non-adherent patients. For a case study, please see http://www.hccatalyst.com/solutions.html

  • http://louisianaqio.eqhs.org Lisa Stansbury

    Hi Dave…sure. It’s been a wonderful project. Here’s a short You Tube piece with our head coach/nurse Laurie describing her view of one patient’s struggle, from the coaches’ point of view. It was taken at CMS’ care transitions conference in December.
    http://www.youtube.com/watch?v=3a0ax6b2YdE&sns=em\

    And CMS will be revealing the national results of their pilot in just a few months. Our local results were printed in the Remington Report here. http://louisianaqio.eqhs.org/PDF/Care%20Transitions/RemingtonReport.pdf

    Laurie’s approach is immersed in respect for the patients’ inherent abilities.

  • Carolyn Smith

    One issue I don’t see raised here is the simple monetary issue: Non-compliant patient (won’t exercise and lose weight), will simply choose not to visit MD again due to “naughty child” lecture fears and MD’s will soon find that they have no patients to scold or be labeled “noncompliant”.

    • http://e-patients.net e-Patient Dave

      Carolyn, seems to me the “naughty patient” lecture has noplace to stand if the patient sees it as a partnership with the outcome being achievement or not.

      I’m not downplaying the issue, far from it. I just keep coming back to how healthcare (and the practice of medicine) would be different if no patient ever expected the docs to wave magic wands.

      I’m no stellar patient myself, btw.

  • http://vhl.org Joyce Graff

    What strikes me is that in the business world, the success of a paid business consultant is measured by the extent to which his or her advice was followed and implemented.

    In the VHL-colored world I live in, “patient compliance” is also about whether the patient follows the screening guidelines the international medical community has devised for keeping on top of possible VHL issues to come. There have been studies about why patients don’t show up for their annual MRI’s. It tends to be little things like …
    1. Fear of what the scans may show — eek! another tumor!
    2. Cost of the procedure(s)
    3. Time away from work — will I get penalized or fired?
    4. Inability to convince the doctor to order the tests that are listed in the VHL Handbook (especially tests for pheochromocytoma), or to convince the insurance company to pay for them. This alone can be a part-time job. — see http://vhl.org/handbook

    Even when the cost factor is removed (as in UK or Denmark), fear and time away from work are major issues.
    Yes, it’s the responsibility of the patient to stay apprised of what’s going on in his or her own body, but as you rightly say we should not just “blame the patient”. We all need to work on figuring out how to schedule tests in a way that respects the patient’s need to earn a living and keep life feeling relatively normal, and helps to build up the person’s confidence that he or she has at least some control. You can get through your fear more readily if you feel this action will provide you with greater control. You probably won’t want to “comply” just because you are told it’s good for you, but if it puts you into the driver’s seat and makes you a true partner in your care, you are probably more likely to do it.

    Best wishes,
    Joyce

  • Scott Macleod

    Just to be somewhat skeptical of this concentration on the language and the blame mode as the answer, I like to look elsewhere. We all know that wearing seat belts saves lives. However it was not until fines were created, did the actual use increase. Human behaviour is just that. It varies from individual to individual and even within one depending on the situation. I am not promoting “fines” as the answer but being the nice provider and spening tons of time and money with more staff and partnership selling to those who “compliance” is avoiding history lessons in other fields. Look at the dismal failure of the drug free promotions to teenagers.

  • Finn

    I think the comments have shown that noncompliance is a problem with multiple causes, and therefore needing multiple approaches. It’s pointless to spend more time explaining the importance of treatment to a patient who can’t afford his prescription or to find financial help for the patient who stopped taking her antibiotic because it gave her diarrhea. Clearly the first thing to do is find out why the patient didn’t follow the treatment plan.

    On the terminology issue, I can tell you that I have been described as a “very compliant” patient (and I am), and still bristled at how patronizing that terminology is. I can only imagine how that term would affect someone who is already doubtful about the need for the prescribed treatment, or who discovers that it is ineffective or causes intolerable side effects.