Language is very powerful and certain words can convey a number of different meanings depending on the context and the situation. Words can hurt (as in “calling names”) or they can heal (as in “words of affirmation”). Words are almost always used by those in power to defend their power. Masterful leaders use words to accomplish their objectives – but so do dictators and autocrats.
When I first entered the healthcare world at the Mayo Clinic in Rochester, Minnesota in the early 2000s, I came across an expression that I found quite strange: Patient Compliance.
I had just moved to the US two years prior and was still vigorously studying the English language and American expressions and trying to understand all of its nuances. Having encountered the word “compliance” in other circumstances (as in: following orders given by the authorities or obeying the rules), it seemed to be at odds with my fresh, naïve view of healthcare. I guess my image of “healers” and “helpers” clashed with the notion of “order givers” and “rule makers”. Why were patients supposed to do as told, “or else”?
Of course I quickly came to understand that most rules were designed to protect the patient (“don’t get out of bed — because you have an IV in your arm!”) and to help them heal or at least prevent a deterioration of their condition.
Over time, as “treatments” and “care plans” became more and more about making lifestyle changes (sleep more, eat less, exercise more frequently) and the prophylactic or health maintenance consumption of medications. Here, the disbelief and frustration seemingly conveyed in the phrase of the patient “not being compliant” seemed arrogant and did not show much empathy and absconding responsibility.
If the doctor tells the patient to take a pill daily and the patient does not take the pill, then who has failed — the patient or the doctor? I’d say definitely the doctor. And maybe also the patient. But the word “compliance” is pre-judging the patient and not taking the circumstances into consideration.
Maybe the pills gave the patients side effects they did not know how to deal with and were afraid to ask about. Maybe they simply forgot. as the habit of taking medication daily is not second nature to most. Or the medication is too expensive. Or maybe the medication was not making them feel abny better (or worse), so they stopped taking it.
In any of these scenarios, the clinician failed the patient in explaining the side effects, in following up with the patient after a week or two, in making sure that the patient understood the benefits of the medication, etc.
Overall the world “compliance” reeks of arrogance and conjures up images of demi-gods in white lab coats “knowing what is best for the medically-untrained patient”.
But after a few years in healthcare, I came across a new term:
Putting on my “English as a second language” hat for a moment, my first association is with “adhesive”, i.e., something that sticks. I guess “adherence” is about “sticking to the rules” and it sounds a bit less harsh and less dictatorial as “compliance’.
When a “patient is not adhering to the care plan”, then it linguistically leaves the option open to change the care plan vs. to blame the “non-adherence” solely on the patient.
Still the concept of patients having to “adhere” to a plan still misses the opportunity to have patients actively participate in their care.
Which brings us to the next term, that I first heard in the mid- to late 2000s.
This new term really shifted the gestalt of the patient/physician relationship from one of a “master and servant” to co-conspirators in figuring out the best approach to solve the problem at hand: how to improve the patient’s condition.
What clinicians, I think, realized is that ultimately the patients are the ones who have to put in most if not all of the work: Take the pills. Watch your diet. Go to physical therapy. Undergo the surgery. Have that CT scan. Etc.
Almost none of those activities involve the treating clinicians — but they all involve the patient. The goals of the care plan thus can only be achieved if the patient is engaged in the design of their care journey. And it becomes the clinician’s responsibility to get the patient engaged – and not to simply expect the patient to comply with a plan they developed without the patient’s involvement.