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December 1, 2020

Why don't patients stick to their treatments? This doctor can explain it firsthand.

Daily Briefing
    Editor's note: This popular story from the Daily Briefing's archives was republished on Oct. 25, 2022.

    At 13 years old, Jessica Stuart had non-Hodgkin's lymphoma—and she didn't always take the 11 pills her doctors had prescribed her to take each day. Writing for STAT News, Stuart, now a resident physician at Brigham and Women's Hospital, explains why she sometimes was a nonadherent patient and how the experience helped her become a more empathetic doctor.

    How digital tools can support medication adherence

    A nonadherent cancer patient

    Stuart writes that while she was undergoing treatment for non-Hodgkin's lymphoma, she was prescribed a litany of medications that "worked either to fight the cancer or to prevent the complications that arose from the cancer-fighting medications."

    For example, her doctors had prescribed her methotrexate, which helped to stop cancer cells from duplicating their DNA but also damaged the white blood cells that fight infection, which made Stuart more vulnerable to certain types of pneumonia. Because of that increased vulnerability, Stuart writes that her doctors also prescribed her the antibiotic Bactrim.

    Stuart also was prescribed prednisone, which worked to kill lymphoma cells but also came with the side effect of stomach ulcers. To ward off the ulcers, Stuart also took omeprazole to decrease her stomach acid.

    Stuart writes that the amount of medications she was taking became so overwhelming that, at one point during her treatment, she stopped taking some of them. "I remember I would pluck the chemotherapy pills—the ones actually killing the cancer—from the paper cup, leaving behind the ones that prevented complications," she writes.

    According to Stuart, it's difficult for her to explain why, exactly, she stopped taking some of the medications because the answer is complicated.

    Her age "certainly played a role," she writes, as "[e]xecutive function is not primed in a 13-year-old."

    But that, alone, didn't explain "what a nuanced move it was for me to stop taking some pills but continue taking the chemotherapeutic ones," Stuart writes, noting that although the medications she continued to take "were the ones actually treating a known disease, while the others were all preventive," none of the medications were more important than the others.

    It wasn't the side effects either, Stuart writes, as the "medications with the worst side effects were the ones [she] continued taking, the chemotherapies." Nor was it cost, a lack of emotional support, or a sense of denial about her disease that caused her to stop taking some of the medications, Stuart writes.

    "My decision was, in a small and inappropriate way, my way of asserting control in a world that was spiraling out of control," Stuart writes. "My body with its bald head, stretch marks, and toothpick-thin legs was foreign to me. My days filled with hours of television, doctor's visits, and seemingly endless vomiting were so different from the days of sports, school, and friends I had been pulled from. I did not want or choose to be sick, so I decided I would not adhere to the medical regimen that had been imposed on me."

    Stuart was nonadherent to her treatment for only a short while. She writes that her parents found the pills she wasn't taking and, after a week, her dad—with "tears in his eyes"—sat her "down and [told her] how important it was to take all of [her] medicine, every day, so [she] could get better." Stuart once again began taking all of her medications, and she's now been lymphoma-free for 13 years.

    How being a nonadherent patient made Stuart more empathetic

    According to Stuart, medical professionals often view nonadherent patients with a stigma. For instance, she writes, "on rounds in the hospital, I have heard colleagues say, 'The patient has a history of being nonadherent to medication' in a way that is dripping with blame."

    And Stuart writes that she does understand the frustration providers can have with nonadherent patients. She recalls, for example, how she once took care of a liver transplant patient who had to be hospitalized many times because he wouldn't take his antirejection medications. "On rounds, the liver specialist I worked with, who had known the man for more than 10 years, started crying as she discussed his case, admitting, 'I just don't know what to do,'" Stuart writes.

    But Stuart also knows that "this 'history of being nonadherent' label applies to [her]," she writes. And as a result, she has empathy for the patients and understands "the distinct psychological challenges of the ill and the way in which it is so hard for healthy people—my current self included—to understand them."

    Ultimately, Stuart writes that she intends to approach patients who are nonadherent "with humility and compassion." She notes, "I feel sad when I think back to the liver transplant patient and how the judgment-laden thought, 'How could he not take these lifesaving medications?' crept into my mind, knowing the same question could have been asked of me as a cancer patient."

    Instead, Stuart writes that she does her best "to turn that exasperation into empathy and transform the question into a statement for nonadherent patients: 'Being sick is really hard'" (Stuart, STAT News, 11/6).

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