Clinicians routinely talk about the challenges of caring for non-adherent patients. What about patients who comply with tests, treatments, visits, and timely reporting of symptoms? With aplastic anemia now rocking my world in unexpected ways, I see how talking about the toll of compliance may open new opportunities to comfort and inspire patients who are compliant, non-compliant, or anything in-between.
Initially diagnosed with cancer in 1990, I vowed from my hospital bed to be like the low-maintenance patients in my practice. Once discharged, I discovered that complying goes beyond following directions. "I knew exactly what I had to do to increase my chances of a good outcome...and yet, for some reason, I was not always doing the right thing." (Happiness in a Storm. WW Norton; 1997). Humbled by early lapses, I sought to narrow the gap between knowing what to do and doing it. Over the years, my lists of "Practical" and "Emotional" obstacles kept growing and overlapping. My approach to optimizing compliance centered on helping patients recognize and overcome those obstacles.
Obstacles to compliance. Cancer causes an unsettling sense of loss of control, which can be exacerbated by the demands of medical scheduling, prescriptions, and proscriptions. A need to feel in control may explain why a smart thrombocytopenic patient kept riding his motorcycle and a fellow physician skipped her final radiation treatment.
Medication goofs could be blamed on multi-drug regimens combined with fatigue, stress, and/or cognitive impairment. Patients' hesitation to report symptoms may reflect dread of introducing additional stress and uncertainty at home. That hesitation increases if patients feel unsure whether symptoms qualify as serious enough to "bother" doctors, especially afterhours. If a patient's call falls through the cracks, the increased appeal of waiting until the next routine visit may erode patients' resolve to call again.
Early in my survivorship, I found ways to overcome such common obstacles. Pill minders and cell-phone alerts decreased medication errors. New habits and personalized aphorisms short-circuited emotion-driven rationalizations, making compliance almost automatic. (Healing Hope-Through and Beyond Cancer; Curant House; 2018). If I still hesitated, two mantras did the trick: "Action is your superpower" and "Just do it, no matter how 'doing it' makes you feel."
The toll of compliance. My survivorship skills worked well until given a diagnosis of aplastic anemia. My initial gloom and anxiety were predictable. Confident of my honed survivorship skills, I expected to make a graceful adjustment. Months later, unrelenting sadness and irritability disappointed and confused me. At a routine follow-up, while sharing my distress the crux of my problem became clear: I could always muster enough willpower to comply, but no amount of willpower or practice could prevent all the painful thoughts and feelings about the associated stresses and losses.
For example, two of my medications must be taken hours after food and can't be taken together. To comply, I changed our decades-old mealtime routines. At my son's wedding and then at my granddaughter's birthday party, I was the only one not eating cake. It was no big deal to save it for later, and nobody noticed. But in-the-moment reminders of my life-threatening illness intensified the emotionality of those milestone events.
Patients who do everything you ask of them-eagerly or reluctantly-may experience grief about...
* Physical losses (e.g., hair; taste; memory; mobility; immune competence)
* Social losses (e.g., changed relationships; lost roles; missed events)
* Financial and educational losses (e.g., inability to work or continue school)
* Loss of routines, hobbies, expectations, hopes
Each patient brings unique longstanding issues to an illness. If dealing with poor body image, complying with physical exams may provoke anxiety, embarrassment, or shame. If scarred by past bullying or abuse, physicians' directives may stir anxiety or helplessness. If financially strapped, patients feeling guilty about using family funds may wrestle with temptation to delay appointments, skip medications, or keep symptoms secret.
Regret tends to be greater after acts of commission (versus omission). Might compliant patients suffer from subliminal regret, having brought the losses on themselves by their actions? Even if that's nonsense, things going awry after doing everything right may heighten frustration, anger, confusion, disappointment, and sense of powerless vulnerability. Setbacks despite patients' best efforts may lead to loss of confidence or hope.
I'm not complaining, just reporting: Marshaling needed physical and emotional energy to keep complying can be exhausting. Over time, the toll of compliance may threaten patients' sense of self, set the stage for depression, or prompt withdrawal or dangerous choices.
How can clinicians help? While in practice, I encouraged patients to comply by focusing on the benefits they'd enjoy. That approach unwittingly downplayed the hardships and sacrifices. If I had it to do over, I'd prepare patients for the toll of compliance and bolster their confidence in managing it by...
* Acknowledging the toll. All these tests and treatments demand a lot of time and effort.
* Clarifying leeway. Let's review which things need to be done exactly on time and which have flexibility.
* Encouraging communication about the toll. Please keep us informed about how it's going. If following instructions creates stress, we may be able to make changes without compromising your chance of the best outcome.
* Reframing the toll. Complying is the most powerful way for you to influence the outcome. While the toll of complying may feel like a lot, we know the toll of not complying would be greater.
* Offer support. Support services offer insights and tips on doing all the things you need to do.
Compliant patients make your work easier and more satisfying. On the other side of the stethoscope, complying can be disruptive and exhausting. Thinking and talking about the challenges and losses associated with compliance may assist in your evaluations, guide your instructions, and open opportunities for healing words of comfort and inspiration.
WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope-Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on "Healthy Survivorship" and "Healing Hope." As she notes on her website (http://wendyharpham.com) and her blog (http://wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.