“Failure or refusal to comply. In medicine, the term noncompliance is commonly used in regard to a patient who does not take a prescribed medication or follow a prescribed course of treatment. A person who demonstrates noncompliance is said to be noncompliant.”

While the above definition sounds bland enough, in reality this label carries along a lot of negative baggage.  It implies willfulness on the patient’s part, i.e., he/she is purposefully not following treatment recommendations.  So, if the patient who is deemed ‘noncompliant’ has a bad outcome, the fault lies with the patient, not the provider or medical system as a whole.

It kind of lets us off the hook.

Which is a cop-out.

Mr Q, 65 yrs old, was referred to our palliative care clinic ostensibly for a discussion about hospice.  He had just been diagnosed with widely metastatic colon cancer.  He wanted to ‘try anything’ to slow down the disease, but due to his overall frailty, palliative chemotherapy was not an option- it would likely kill him faster than his disease.  When reviewing Mr Q’s medical record, it saddened me to realize that when he was initially diagnosed 3yrs earlier, his cancer was considered curable.   Mr Q received the first parts of the recommended treatment- neoadjuvant chemotherapy followed by surgical resection.  But the months following his operation were filled with missed appointments.  On the few instances when he did come in, the clinician noted he “continues to be noncompliant” with the treatment regimen.  Then Mr Q disappeared from the system for over a year and missed a critical part of the proposed treatment.  Now he returns, with widely metastatic disease.

Mr B, 46 yr old, with a long-standing seizure disorder secondary to tuberous sclerosis and multiple other medical issues.  He typically shows up in the emergency room when urgent issues arise (ex. a seizure when he has run out of medication), gets admitted, gets treated and then the cycle repeats.  The frustration of the treating providers radiates from their notes as they comment about his ‘continued noncompliance’ with follow-up appointments and frequent emergency room visits.

Both Mr Q and Mr B are labeled ‘noncompliant’ and the providers seem to leave it at that.   Aside from sending out letters to try to reschedule the missed appointments, there is little to document that anyone tried to find out the why behind the behavior.

Try this test of compliance to mimic a commonly prescribed antibiotic regimen.  See how well you can do.

• Purchase a pack of m&m’s or skittles or nuts, whatever.
• Count out 28 and put them in some type of a container.
• They will be your medication, which needs to be taken 4 times/day for 7 days.
• AND, they must be taken on an empty stomach (which means ½ hr before or 2 hr after eating).

How well do you think you can do?

It’s not that easy. Likely there will be days when you forget and have breakfast before the first dose in the morning.  Additionally, you will forget to bring the ‘pills’ with you when you leave home.  There’s lots of ways to accidentally miss doses.  And you have it easy:  you aren’t really sick (so no symptoms of for example, nausea, fevers, fatigue) which may make taking the medications challenging, the “pills” have no side effects (and are even pleasant to take), and you can easily afford their purchase.   Even with these advantages over the reality of many of our patients, it’s likely you will miss doses- because even if you want to comply with the regimen, it’s nearly impossible to do so.

My bias is that although there may be patients who make a conscious choice not to follow the prescribed treatment regimen, the vast majority of patients who get labeled as ‘noncompliant’ are not purposefully going their own way.  And honestly, do we really think that someone who has sought out care wants to incorrectly follow the prescribed treatment plan?

The point of this post is to impart the notion that when labeling a patient as ‘noncompliant’ it says more about us/the medical establishment, than the patient.  It’s reflects a failure to tailor effective treatment to the individual patient in front of us.

and for both of these patients, their realities were far more complicated than providers understood.

Mr Q’s reality:  About two years ago, just after his operation, Mr Q’s 25 year old daughter sustained a devastating injury, which left her permanently quadriplegic.  She requires total care, and with few resources to help, Mr Q became the primary caregiver for her and her young daughter.  His wife works multiple part-time jobs; the family barely keeps afloat financially.  Any wonder he missed appointments and was lost to follow-up?   Mr Q has a 24hours/day, 7 days/week job caring for his family, which he does without complaint.  That his daughter survived the accident, is “God’s blessing”.  He does not have the luxury of being able to think about himself- his daughter and his family are his life.   No matter the consequence.

Mr B’s reality:  Mr B lives with his girlfriend and teenage daughter in a very rural area at the far end of the county.  They are intermittently homeless and have little social support.  He doesn’t drive and there is no public transportation that will get him to the only clinic that will take his limited insurance (50 mi away).  Although his insurance theoretically provides transportation assistance- the service is unreliable.  Plus, Mr B has cognitive challenges (from his underlying condition), and he depends on his teenage daughter to help him with day to day activities.  Do you really think he is purposefully not following instructions?

Are these patients really being noncompliant?

It would be far more productive if providers would take the point of view that the vast majority of patients are trying their best.  For many, life is complicated.  And the prescribed treatment regimen may be impossible to follow given their real-life every day issues.    Cost of medications, number of pills/day, side-effects, transportation, work, life challenges- all these things have to be juggled by patients while they are trying to manage their illness.

So instead of just writing someone off as ‘noncompliant’– have some humility and empathy.  Reach out, take the time to determine what is interfering with their ability to follow through and try to understand their world, from their perspective.  Explore how you can garner resources or change the regimen or do whatever it takes to come up with an effective treatment regimen.  Patients come to us for help- it’s our responsibility to come up with a plan that is both effective and doable.