The needles on a white pine in my yard had turned brown so I consulted Jack, an arborist, to see what might be done. “Bad news”, Jack said. The tree was infected with a fatal and contagious blight. He advised taking it down along with its neighbors on either side. Though the other two trees looked healthy they, too, would soon be blighted. It would be best to do the job all at once and quickly before the infection spread even further.
Though I trust Jack, I was reluctant to follow his advice. Instead, I stalled by peppering him with questions: Were the trees in any real danger of toppling over? What if the dead-appearing tree recovered? What if the other trees didn’t get infected after all? Would there really be any harm in waiting a few months and seeing what happened?
As I interrogated Jack I sensed his growing frustration. I’d sought his expertise as an arborist and now I was negotiating or even arguing with him though, I’d be the first to admit, I knew nothing about trees.
If Jack had been a physician he might have labeled me “noncompliant,” the term used to describe patients who don’t do what we think they should. Like certain other medical jargon—“deny” comes to mind, as in “The patient denied alcohol use” (implying that they might be hiding something)–“noncompliant” contains a seed of judgment. In other contexts, “noncompliant” means rigid or stubborn.
The very high prevalence of medical noncompliance, however, suggests that it must be explained by more than sheer obstinacy. The Centers for Disease Control and Prevention (CDC) estimates that in 2016 fewer than half of all Americans received the recommended vaccination for influenza and the numbers of Americans who have had screening for colon, breast, and cervical cancer is failing to meet targets set by the national Healthy People 2020 initiative. Beyond the U.S., the 2017 Future Health Index, a survey of 33,000 healthcare professionals across five continents, reports that a high percentage of patients don’t even recall their physicians counseling them to lose weight and stop smoking.
When I first went into practice as a primary care doctor many years ago I saw my role as rather paternalistic—an odd stance for a young woman, in retrospect. I took pleasure in knowing that the Latin root of doctor is docere—to teach—and assumed that if a patient did not do what I thought they should do either they were recalcitrant or I hadn’t communicated my instructions effectively. I remember a woman named Janie, admitted repeatedly for diabetic ketoacidosis after missing doses of insulin. I asked her to enlist a family member or an aide to help administer her insulin, but she refused. At every discharge, the medical staff asked Janie who would be helping her with her insulin and she’d reply “My own self.” We were flummoxed. How could someone make a decision so self-destructive, so ill-advised, so plainly wrong? We referred Janie to a social worker and a therapist but never got to the root of why she was so intent on managing her own diabetes when she was incapable of doing it safely.
Understanding non-compliant behavior
In a recent blog at NEJM Journal Watch, an emergency physician describes a patient much like Janie. Despite repeated admissions for diabetic ketoacidosis, the woman missed appointments and insulin doses and ate sweets. Why would someone act so blatantly against her own self-interest? The author provides a list of possible answers–a “differential diagnosis” of noncompliance–including “premature discharge,” “low health literacy,” and “financial difficulties.”
Then, the author considers a more disturbing possibility: that self-harm may actually be the patient’s goal. She quotes an intriguing 1984 article observing that patients admitted to the hospital repeatedly with DKA resemble the Sartoris family in William Faulkner’s novel, As I Lay Dying: ill-fated simply because they are “hell-bent on self-destruction.”
Slow suicide may indeed be the intention of certain noncompliant patients. Commonly cited factors involving patients’ education and financial resources, not to mention the practices and attitudes of their caregivers, contribute to noncompliance more often. But when I’ve probed deeply into a patient’s reasons for rejecting medical advice, I’ve found that they are highly individual, deeply rooted in a life story, and not so neatly classified.
Take, for example, my patient Maurice, who refused to wear oxygen despite his chronic hypoxemia. When I first met Maurice, his refusal puzzled and exasperated me. How could someone with an oxygen saturation in the low eighties, someone with blue lips and clubbed fingers, someone who often seemed visibly short of breath, refuse oxygen? At every visit I talked while Maurice shook his head. “No, no, no.” He incanted. “No oxygen.”
Then one day I asked Maurice to tell me more about his life, about what oxygen meant to him. It turned out that he’d been chronically ill as a child but very proud and independent and determined not to become invalid. Wearing oxygen, to him, represented surrender in a very old battle. Plus, Maurice was a dapper man and ugly plastic tubing and metal tanks did not fit his self-image. Ultimately he agreed to use oxygen only in the privacy of his home. It wasn’t ideal, medically, but it was what he could abide. I reflected later that without calling it such, Maurice and I had participated in the relatively new model of shared decision-making, in which patient preferences are taken into account as much as doctors’ edicts.
Like Maurice, there was more to my “noncompliance” regarding the white pine trees than met the eye, or Jack’s eye, anyway. To him, the problem, and its solution, were obvious. He likely thought my main concern was the cost of taking down the trees. I did flinch at the expense, but mostly I just loved the trees and couldn’t bear to lose them. I feared severing the connection I feel to the young mother I once was, holding my now grown babies while looking at the trees’ perfect, horizontally oriented limbs. Contemplating their loss, I could relate to Henry David Thoreau who, a hundred and fifty years earlier, living not far from where I live now, wrote The Death of a White Pine in which he mourned the loss of a tree just like mine. He wrote: “A plant which it has taken two centuries to perfect, rising by slow stages into the heavens, has this afternoon ceased to exist…Why does not the village bell sound a knell?”
In the end, Jack and I agreed that the tree in the middle, the dead one, should come down, but that we would wait and see how the other two fared. It wasn’t exactly what either of us wanted, but it was a plan both of us could live with. Like healthy trees facing a strong wind, we’d each bent a little. We’d each complied.
 All patient names have been changed to protect their privacy