Non-compliant patients who, for whatever reason, do not follow doctors’ orders are a pain in the neck to their physicians. But to me, the most problematic part of that statement is the use of the word non-compliant. Simon Davies of the U.K.’s Teenage Cancer Trust once described it as “a word that sounds like it has punishment at the end of it.” Yet physicians are frustrated about why so many of us still refuse to take their expert medical advice, particularly around taking recommended medications.
And as I’ve written in Why Don’t Patients Take their Meds as Prescribed? , for example:
“Some commonly held theories include forgetfulness, distressing side effects, the challenge of managing multiple prescriptions, psychosocial and cultural issues, uncertainty about the actual need for the medicine, and – of course – cost..“Let me just offer this pearl: this is a multi-faceted, complex issue, so what we don’t need is a single-purpose beeping, flashing pillbox to remind us to take our meds.”
Dr. Subho Chakrabarti explained in a 2014 study on this subject that the word compliance is defined simply as “the extent to which the patient’s behaviour matches the prescriber’s recommendations”.(1)
He knows how important it is to physicians that patients follow their advice. When they don’t, the problem is often compounded by a continued decline in following advice over time (so if you start off ignoring your doctor’s advice, you’re unlikely to suddenly stop ignoring it later on).
And he adds that this can not only adversely affect the outcome of your treatment, but it places a huge burden of wasted resources on society.
” Compliance refers to a process where the clinician decides on a suitable treatment, which the patient is expected to comply with unquestioningly. The word has adverse implications for patient autonomy and the clinician-patient relationship.”
Enter the new improved term, adherence. Dr. Chakrabarti describes this potential replacement for the word compliance as part of an effort to place the clinician-patient relationship in its proper perspective:
“Adherence refers to a process in which the appropriate treatment is decided after a proper discussion with the patient. It also implies that the patient is under no compulsion to accept a particular treatment, and is not to be held solely responsible for the occurrence of non-adherence.
“Adherence has been defined as the extent to which a person’s behaviour, taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider. It requires health care professionals to embrace patient participation in deciding treatment choices, and being non-judgmental about patients’ behaviours.”
This must sound like crazy talk to many physicians. They watch in frustration as their carefully considered recommendations are ignored, as people who could get better get worse because they refuse to follow recommendations, and as a growing segment of patients seems to openly question these educated opinions. .
Consider the important work being done by Mayo Clinic’s Dr. Victor Montori and his colleagues on the concept called Minimally Disruptive Medicine. This approach focuses on the “burden of illness” carried by patients living with chronic progressive disease. As Dr. Montori explains:
“One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives.
“This concept of burden of treatment relates to the distress (including suffering, interruption, inconvenience) caused by treatment-associated demands for time, attention, and work.”
PhD student Christiane Grünloh lives in the beautiful city of Cologne, Germany. In her recent HTO essay called Behaviour Change, Social Practice Theory, and Learned Helplessness, she also writes of this new term called concordance, about a patient living with Parkinson’s disease:
” He made a very conscious and informed decision not to take his prescribed medicine due to negative side effects that were so strong that he feared he would lose his family. This patient probably would have been labelled ‘non-compliant’. But his situation was more complex than that.”.
.” The approaches that I perceived as paternalistic may serve the society at large (i.e. take your medication, stop smoking, exercise more, eat healthy… so that you don’t become a burden to society)..“But these alternative approaches use coaching and reflection to help the individual to help themselves. In the end, the goal of the individual might be in concordance with or contribute to the societal goals, but the underlying basics of the approaches are quite different..“Why not aim for systems that help individuals to reflect on their behaviour, possibly help them change for the better (whatever that is…) and by that potentially contribute to the greater good?”
Dr. Chakrabarti sums up the compliance/adherence/concordance question like this:
Subho Chakrabarti, “What’s in a name? Compliance, adherence and concordance in chronic psychiatric disorders”, World Journal of Psychiatry. 2014 Jun 22; 4(2): 30–36.
Q: Compliance, adherence or concordance: which is better?
NOTE FROM CAROLYN: I wrote more about heart medications and how patients adapt to their cardiac diagnoses 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).