Compliance Is Complicated
I’ve been a patient since I was two years old, and in all that time I’ve never not been nervous during a rheumatology appointment. Any time I sit with my rheumatologist I’m reminded that I have a serious, potentially life-threatening illness and that, like it or not, my life is more complicated and challenging as a result. Often during an appointment, we talk about my stubborn, swollen joints and whether the medication or medications I’m taking are helping to control them. Rarely, a doctor will talk to me about something other than medications, and usually this is spurred on by a question from me, about the value of physical therapy or a similar topic. My nervousness often comes from the tug-of-war that seems to happen when I start to question the cost/benefit analysis of taking medication and/or staying on a medication that is causing me side effects.
Cautious of RA medication side effects
From where I sit, there is good reason for me to be cautious. Every medication I’ve ever been on has caused me some side effect so, for me, it’s a waiting game once I start something new. I’ve completely butchered my favorite aloe plant because of systemic itching I suffered while on a medication to control my JRA symptoms, I’ve gone temporarily deaf and blind, I’ve felt like I had the flu for half the year, I’ve completely lost my appetite- these things erode my quality of life just the way the JRA does.
Talking to a doctor about medication concerns
But when I’m with an MD, it’s hard to get that point across. I understand why: from the perspective of a rheumatologist, these things are less important than swollen joints. My swollen joints are scarier to them because they lead to deformity, pain, and disability. All of the metrics show them the value of taking medications as prescribed. The research they see shows them clearly what happens to people with untreated RA, and they went through medical school looking at pictures of severely deformed joints. They say to themselves, “Not on my watch!” I thank them for that.
Medication side effects & patient compliance
What the research says
When doctors talk about patient compliance, they look at health literacy, education, doctor/patient interaction, and ask themselves if emphasizing the benefits of taking medication will help. So far, from the studies I looked at (see the reference below), physicians are being confounded in their efforts to increase compliance.1 One study looked at whether showing patients their actively swollen joints on an ultrasound would help compliance, and they found that although patients were more likely to state that they believed medication is necessary, compliance wasn’t affected.
Asking the right questions about RA and RA treatment
When I think about this predicament we’ve found ourselves in, I have to wonder if any of us are asking the right questions. The first question I would ask is: what exactly are we dealing with here? A disease of unknown origin, that partially responds to pharmaceutical treatment, partially responds to alternative treatment, and partially responds to lifestyle adjustments. There is no cure and, every once in a while, a clinical remission which may or may not last for any length of time. A disease that changes often and without warning, and can start or stop responding to treatment at any time. The second question I would have is: what exactly are we trying to do? It may be the occupational therapist in me but my answer will always be, given all the uncertainty with this disease, we are simply trying to maximize quality of life. If you look at handling RA with this perspective as I do, medication is but one aspect of a life designed to minimize the impact the disease has on the life you want to live.
Rethinking RA treatment compliance
The importance of the doctor-patient relationship
I’m not sure how to bridge the doctor-patient divide when it comes to medication, but I do know that how medicine is practiced makes it hard. The limited time to get to know each other decreases trust and increases judgment which doesn’t help. The tunnel vision about medication that many doctors have affects my ability to trust their advice, especially when I’m met with the severe side-effects I’ve handled. My own fear and stubbornness about having this disease get in the way as well, and can affect what I say when I’m in the room with my doctor.
Compliance is more than medication
The bottom line is that compliance is important, and maybe we need to think about it differently. The barriers to compliance are complicated and often have nothing to do with health literacy or an easy to track metric. For me, there is one thing that will increase my compliance which is why I’m changing doctors right now. Having a doctor that listens to me, respects what I have to say, and is okay with me being the driver of the decisions we make, builds trust and in turn compliance. The doctor I’m traveling to see now has always done this for me. She also has given me strong lectures about why she thinks I’m undertreating my disease, which is usually what I do when I’m scared. And I’m thankful to her because I know that I need that, and she knows me well enough to know that too. I also know that if something goes wrong with a drug, she will be there with me, helping me to get through- she has done this for me before.
So maybe the answer is good old human connection combined with medical science. We all need to be honest with ourselves about our issues with compliance, and the more we communicate what they are, maybe someday doctors will stop scratching their heads.
For more information about compliance:
How often you do experience an unexpected boost of energy?