I’ve never met MMA, but I can tell one very important thing about her from the blog she wrote about adherence to therapy at home. MMA is not a “difficult” or a “nonadherent” or even a “lazy” patient; no, she’s a motivated patient who wants to get back to life the way it was before her diagnosis. The problem is, she can’t quite do that. Just like when becoming a parent, one can’t undo the set of circumstances and experiences that having children entails, and go back to facing life as a nonparent. Nor can you undo the realities of a cancer diagnosis and the protracted treatment involved in an autologous stem cell transplant as MMA has. I can imagine how challenging it must be to accept this changed reality.
A psychiatrist and cancer survivor I know recently described cancer treatment as a phase in a diagnosis where the patient experiences an organizing force—finding the right provider, learning about options and making treatment choices, dealing with side effects, changing the plan because of new information or problems. One step leads, ideally in a coordinated way, to the next.
Once treatment is completed, patients return home, sometime with self-administered medications, and suddenly there is no regular contact with care providers, offering reassurance and oversight. Yet patients like MMA are “graduated” to survivorship and asked to manage their continued cancer care single-handedly. Whether a patient is getting an oral medication as primary treatment or for risk reduction, there can be very serious implications if we send patients on their merry way, with just a prescription and an information sheet. What happens if the patient doesn’t take the medication as prescribed?
Much of the discussion about adherence focuses on patient compliance, patient responsibility. I believe that patients get the best quality of care for them, if they self-advocate and take an active role in their care. If patients don’t articulate their needs, how can we help them with side effects, financial issues, anxiety, or any number of concerns as MMA so clearly described from her own experience? But really though, even if we want or believe that patients should be an active part of the healthcare team, and expect them to be responsible for taking oral meds or self-administered injections, does this mean that as healthcare providers, we have less responsibility when it comes to these patients? I say no.
As a patient advocate, I participated in the American Society of Clinical Oncology workshop as the organization updated its Chemotherapy Administration Safety Standards to include guidelines for oral medications. At that meeting, several participants articulated the many potential barriers to a patient’s nonadherence—these have been acknowledged for years—financial restraints (there isn’t always parity in payment by insurance for oral meds compared with intravenously administered ones), onerous side effects, patient lack of comprehension about the importance or purpose of the meds, etc. All of the commonly voiced potential barriers to adherence point to why patients may have trouble taking their medications as prescribed—and their solutions always point back to the patients and the job they must do and the various tools that can help them.
While these aids surely help some, I think there is a bigger issue at hand. At the heart of the issue is this—who is responsible for monitoring how a patient and his or her disease is responding to the given treatment and making treatment adjustments to improve outcomes? Should responsibility for monitoring outcomes be different, depending on whether a provider or the patient him- or herself administers the treatment? If providers monitor, measure, and document outcomes for intravenous cancer treatments administered at a healthcare facility, they should hold the same concern and practice the same quality and safety measures when a patient is sent home alone to manage the medication delivery on his or her own. I say that providers still own a great deal of responsibility when a patient is sent home with a prescription to fill.
MMA offers the solution, and it’s not difficult—provide the personal touch. And this is where a navigator comes in. Navigators can play a key role in following up with patients to see if they have been able to fill their prescription, if they are having any problems with taking the medication (remembering when to take it, especially if they are taking several medications or have comorbidities), paying for the drugs, problems with side effects, recalling what the medication is intended to achieve, and why it’s important to take it. I would argue that it’s not just the navigator’s responsibility to monitor patients in a regular and timely way—the oncologist, other physician extenders, pharmacists, and social workers all have touch points with patients and can do their part to support patients in taking their medication as prescribed. As a navigator, you can take the lead at your workplace, and create a feasible process within your practice’s workflow (using reminders in your electronic medical records software) to regularly follow up with your patients to see how they are doing with following the care plan. Consider coordinating a training where staff can learn how to use motivational interviewing, which has shown to be an effective method for provider–patient communications. Navigators can use motivational interviewing during the patient education about self-administered medication use to anticipate potential barriers (and avoid them) to adherence. Let’s not leave our patients feeling home alone, out of sight, out of mind, neglected.