“I kept trying to come up with new memory devices to improve her pill-taking, hoping that it was simple forgetfulness.” These were the thoughts of Dr. Michael Stein as he worried over the non-adherence of his HIV patient of three years, Beatriz. One would think, that the patient education she received, regarding the results of not following her plan of care, (such as increased suffering and an early trip to the grave) might have improved Beatriz’s memory. It did not.
 Stein, Michael, (2016) Losing Control, Harvard Business Review.
Simple forgetfulness is a function of choice, likely based on the consequences of following a care plan. I am reminded of the inscription on the James Farley Post Office in New York City that reads, “Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds.” This inscription, which was not based on the US Postal Service, but rather the mounted couriers of Persia in 500 BC, showed that all things can be endured when the consequences of the behavior are positively reinforced. Is it possible to improve adherence so that patients let neither inconvenience, nor expense, nor illness, nor forgetfulness, nor side effects, nor distrust stay them from the appropriate implementation of their plan of care?
Nothing is forgotten more frequently than taking a pill or a handful of pills, day after day. Every behavior has consequences. Positively reinforced behaviors almost never end up in the pile of unfinished tasks at the end of the day? To be sure, there are times when things are forgotten and then picked up at the next opportunity, as long as there is positive reinforcement.
Care Plan Punishment
People avoid punishing consequences. Whether they get something they don’t want (punishment) or avoid the loss of something (penalty) they already have and want, negative consequences are consequences that normal people avoid. Patients, in particular, want to avoid negative consequences because their tolerance for negative consequences has been lowered by their illness.
Few providers think of their care plans as punishing. Punishment clearly violates the 2,400-year-old Hippocratic admonition to, “first, do no harm.” From the provider’s perspective, care plans offer only positives. By definition, harm refers to injury or damage, and is easily overlooked when the pharmacopoeia describes treatment as improving, reducing or stopping harm. At the same time, all providers are aware that many medications have side effects. Some medication therapies, once started, will be a lifelong commitment to a daily regimen of care. Side effects, lifelong and daily regimens, from the patient’s perspective, are all punishing.
Journals are full of articles listing the value of being “patient centered.” The 2010 National Healthcare Disparities Report stated there is a need, “To provide all patients with the best possible care, providers must be able to understand patients’ health care needs and preferences and communicate clearly with patients about their care.”
Today, it is not enough to know that your patients are non-adherent. We need to know why they are non-adherent. How can we possibly address this behavioral issue when we don’t know where the problem lies? BEARS offers assessment and analysis tools that can be easily used with your patients to assist you in looking at the “punishers” from the patient’s perspective.
Beatriz: This is What You Need to Do… Show Me Where You Can’t or Won’t Do It!
Patient centeredness goes beyond just doing the right thing for your patient. It goes beyond providing educational materials. It includes identifying the things that your patients are likely and not likely to do. Everything we ask our patients to do will have Positive and Negative consequences. In addition, the consequences can be either Immediate or Future, Certain or Uncertain, and your patient may be either Aware or Not Aware of the Consequences. Going through the care plan with the patient, using the BEARS Consequence Analysis, is the most practical and patient centered way to achieve adherence and persistence. There is power in consequences. Consequences that are Positive, Immediate, Certain and the patient is Aware of the event are highly likely to improve or continue adherence. Conversely, Negative, Immediate, Certain and Aware of the consequences will stop adherence.
Forgetfulness is a Symptom of Consequences.
Beatriz’s admission that she was missing pills was reasserted every three months. “I forget. I don’t keep them with me,” she said. I warned her at every visit that forgetting to take her pills, two or three days a week, would get her in trouble…” Dr. Stein wrote, “I needed her to be perfect with her pills.”
The only way for providers to ensure adherence is to identify the consequences that are punishing to adherent behavior. Consequences come in many forms. These can be divided into manageable categories. ICE-IF-SAD is a good mnemonic to remember the key factors: Inconvenience, Choice, Expense, Illness, Forgetful, Side Effects, Accepting and Distrust.
However, only Choice is the linchpin in this formula because choice is a function of convenience, expense, illness, side effects, acceptance and distrust. The patient chooses to take or not take the medications because of the consequences. Forgetful is a passive symptom of choice. Perhaps your patient forgot to take his or her medicines because the cost was too great or the side effects too many. Knowing why your patient chooses to forget or chooses to not fill the prescription is taking the correct step towards making your plan of care more “patient centered.”
Forgetful is not a behavior. Dr. Ogden Lindsley famously created the ‘dead man’ test saying that if a dead man can do something perfectly, it is not a behavior. A dead man can be forgetful, but a dead man cannot make a choice!