Wellness: Are You Compliant?

By Julie Desch, MD

I can’t really speak to the focus of this issue of CF Roundtable, transplantation, other than to say that I am continually amazed by the courage and sense of gratitude that emanates from everyone I meet who has undergone the procedure. I hope only that when/if it becomes necessary for me, I will handle it as well. Instead, I am going to take this opportunity to vent on one of my pet subjects: compliance.

I don’t know about you, but when I hear people who don’t have CF talk about the difficulty of “compliance” in people with CF, I become a touch irritable. I know that doctors mean well, that parents mean well, and that psychologists mean well as they look for ways to “increase compliance” in those of us with CF.

As a doctor myself, I understand the frustration your doctors feel when their suggestions are not taken. It drives them crazy. They know from years of training and practice, and from reading current research papers, exactly what their patient (you) should do to optimize health. They have this valuable information and they think that you should take this information and ACT!

Indeed, this is probably a mere fraction of the frustration a parent must feel when their child doesn’t do his/her prescribed treatments or take prescribed meds. Then, not only do they think they know better (and they do), but this is their child whom they love and want more than anything to be healthy. But the doctor and the parent do not live in the body that needs these treatments. They look in from the outside with their “expert hat” on, tell us what to do, and expect us to do it. And when we don’t do it, we are “noncompliant.” Boy, do I hate that word. It adds to the problem! It labels the patient/child as someone who will not change…as someone who is difficult, defiant, a pain in the a**! When, really, the patient/child is simply not yet ready to change, and could use some assistance with the change process.

What does it take for a person who is not doing something (taking a medicine, doing an aerosol treatment, doing CPT or the VEST®, taking enough enzymes, eating enough or eating better, exercising…you name it) to start doing something? I’ll give you a clue: it is NOT information or a prescription from the doctor/parent alone. That is a start – a good start! I would love it if every CF doctor actually prescribed exercise, for example!

What is needed beyond the prescription, though, is “behavior change”. Behavior change is a process that has been studied extensively. As a wellness coach, I have learned all about behavior change. In fact, I recently wrote an entire chapter entitled “How We Change” in a text for personal trainers who are certifying with the American College of Sports Medicine.

Behavioral science tells us that successful behavior change occurs in distinct and predictable stages. You can’t skip stages and expect lasting change. Additionally, there are processes and strategies that are distinctly beneficial to use in some stages and not others. In fact, using a strategy that is mismatched to a person’s stage of readiness to change can be, frankly, detrimental.

I don’t intend to go into a long recitation of the stages of readiness to change and processes for each stage. What I do want to stress is that getting someone to “do what you say” does not work. In my opinion, now is time to apply proven behavioral science techniques to the adult CF population, and assist them in finding their own reasons to change.

How do we do that? First, if you have been branded as “noncompliant”, forget that! People are not either “compliant” or “noncompliant”. It is not that simple! When I work with someone who has been told by their doctor to start exercising, do you think they immediately jump on a treadmill? Of course not. Are they being “noncompliant”? Well, sort of; but that is not the point! The point is, you don’t just start exercising one day anymore than you actually achieve an ill-planned New Year’s resolution.

One of the reasons that coaching works is that an effective coach helps their clients first develop the vision of where they want to go (what changes do they want to make?) and then find their own intrinsic motivators: why they want to change…what will be better…how will their life improve? Intrinsic means it comes from the clients themselves, as opposed to extrinsic, which is a change you want to make to please someone else or to achieve some objective measurement. An intrinsic motivator is a personal thing, a feeling, a sense of accomplishment, self-confidence, etc. An intrinsic motivator will always be there – it won’t go away when the goal is reached. For example, you may have a goal imposed on you (extrinsic) by your doctor to do your hypertonic saline (HTS) twice-a-day. You do it, but only so that you are not labeled a “noncompliant” patient. Then, your doctor stops asking and you slack off, and you realize that you feel much worse. You cough more. It’s harder to clear sputum. You are run down. Suddenly, you have an intrinsic motivator – you know that you feel better on HTS. It doesn’t matter what your doctor tells you about the benefits anymore, you do it because you know that you will feel better, and you want to feel good.

The “noncompliant” patient has not yet discovered compelling intrinsic motivators to do what it takes to optimize health. This is what needs to be addressed; not their stubbornness, or laziness, or general pain-in-the-___ness. We do what we want to do. We need to discover why we want to be as healthy as we can be. “Compliance” will follow.

Julie is a physician who has CF. You may direct your questions regarding CF-related health issues to her at: jdesch@usacfa.org.