Sitting with my morning coffee yesterday, I came across the same article many of us did about young Anthony Stokes, a teenager in Atlanta, who after being told that he had six months to live, was denied placement on a heart transplant list. His physician cited in a letter to the family, “Anthony is not a transplant candidate due to having a history of noncompliance.” This morning, I was relieved to read that the hospital notified the family that young Anthony was now placed on the transplant list, after a day of media coverage regarding their decision.
Today, however, the quake felt from a health care team making a life-ending decision for a patient based on assumed future behavior still echoes.
I can think of a tremendous list of scenarios where teenaged boys are noncompliant. I can also think of a lengthy list of diverse patients who are noncompliant to instructions from their health team. And let us not forget the tremendous list of heart patients who have struggled to maintain a consistent schedule with the many medications they are taking? Patient compliance is one of the main reasons health care reform has concentrated efforts around hospital readmissions, patient discharge summaries, and medication prescribing practices.
A while back, I attended an event with Script Your Future, regarding medication adherence in the United States. One of the speakers that day was Ron Michaud, a tremendous patient advocate and member of Mended Hearts. He bravely shared his story about how he was the only surviving brother among a family with tremendous hereditary heart disease and a history of passing away before turning 40. At the close of his presentation, he held up his list of instructions and his pillbox showing 13 different medications, 21 pills a day at four different times. “Patients have to be their own advocates,” he said and he detailed just how hard he and his wife worked with his cardiologist to create a routine that would keep him healthy, active, and adherent to all of his medications after his heart transplant in 2004.
I don’t know about you but some mornings, I have a hard time remembering to even take my multivitamin and the truth is, as many as 75% of us don’t take our medications as directed.
When faced with a patient unable to comply with their at-home medication routine, I cannot fathom a health team that would just wave a forfeit flag – particularly when that decision involves a patient’s life.
As much as we, as patients, have to be our own advocate, we cannot do it independent of our health team. Articles abound on the impacts of effective patient interventions for medication adherence improvement when the health team, patient and caregivers come together to identify the obstacles the patient faces, discuss the health goals the patient seeks, and build a strategy to achieve those goals together. When they do, success happens.
At Mercy Health Clinic in Maryland, the entire health care team, which includes non-clinicians like the front desk staff, come together to support their patients. On average, a patient has four chronic conditions and the team conducts extensive consultation with the patient and their family caregivers when a new patient is first referred to the clinic. Together, the patient and the team work together to engineer an adherence plan that accommodates the patient’s concerns, the goals, prescribed medications and the needed lifestyle changes. They address language barriers within their volunteer team of clinicians, and even get creative to leverage printed adherence “calendars” for patients that include things like smoking cessation and nutrition appointments to turn a patient’s health future around.
Another example of clinician creativity comes from Massachusetts: After a lengthy consult, a pharmacist discovered that a patient was consistently taking a “swig” of her oral medication from her doctor, thinking that met the criteria for the “one ounce” dosage prescribed on her bottle. To make sure the patient received a consistent dose, the pharmacist took the condiment containers from the hospital cafeteria and made a monthly kit of the medication using the little cups and their lids. This stabilized the dosage amount and the patient’s health stats stopped being irregular almost immediately now that she was no longer taking more than was needed.
We know medications are often not filled because of prescription costs and that alternative medications are oftentimes available and at a lower cost to the patient. We know that refrigerated medications are sometimes not refrigerated. We know that “three times a day” sometimes means spread across 24 hours and sometimes means when awake. We know grapefruit interferes with a substantive category of medications and must be avoided. And we know language barriers between the patient, caregiver, and clinician often lead to adherence hurdles. These facts are just the short list. We know a lot of pieces to this puzzle around adherence, but we also know not one set of pieces will solve every puzzle.
When I consider Ron Michaud and the incredible support he had from his family and his health team, and the examples of creative clinicians everywhere that are just like Mercy Health and the pharmacist from Massachusetts, I can’t help but be frustrated that creativity wasn’t exercised when Anthony showed up as a teenager facing the last six months of his life. My hope is that he finds himself among an inspired health team, dedicated to his health goals, on the day he wakes up from transplant surgery — imagine how empowering it would be to collaborate as a health community and give Anthony back his life instead of giving up.
The hospital has issued a statement and says that they “are continuing to work with this family to establish a care plan and determine the best next steps for the patient.” My hope is that Anthony now finds himself among an inspired health team, dedicated to his health goals, on the day he wakes up from transplant surgery – everyone feels empowered as a health community and continues on a path to gift Anthony his future.
As many as 115,000 people are waiting on the organ donation registries in the United States right now. You can register as an organ donor online at Donate Life America.