John is a 55-year-old man. He is overweight. He takes two different pills daily for diabetes. He also has hypertension and, until recently, was using a diuretic, a so-called “water pill.” Because he was not meeting the target for blood pressure control set in the practice’s contract, his doctor added another tablet, a beta blocker. Now, every time John stands up quickly, he becomes dizzy. John also has high cholesterol, depression, a painful lower back, and pain in his feet from damage to his nerves caused by diabetes.
Because of lack of progress in improving any of these conditions, John’s primary care clinician referred him to the big medical center. Her hope was that he would get sorted out by a diabetes specialist, a podiatrist, and a dietitian. To attend these appointments, John had to take time off work and convince his neighbor to give him a ride. In these visits, the doctors told him that he needed to avoid salt, fats, and carbs; that he needed to be active and to exercise despite his painful back and feet; that he needed to check his feet regularly, but John has not been able to see his feet in some time because of his rather large belly.
The doctors repeatedly admonished him for not taking his pills regularly, assuming this must be why he was not making the disease targets … even though he does take them. This is exactly why he gets dizzy when he stands up too quickly. He did not get a chance to contradict them. They also told him to check his blood sugars and to log them. He has been writing down his numbers religiously, bringing them to his appointments. Instead of reviewing the logged numbers, his doctor routinely focuses on a laboratory measure of the average blood sugar levels in the last three months, hemoglobin A1C. In all these encounters, clinicians only discussed John’s inability to lower the levels of his A1C, cholesterol, blood pressure, and weight. Not a word about John’s difficulties with pain, insomnia, and despair.
Worries about his job keep John up at night. Because of layoffs, John was now the only accountant left of the three the company used to employ. He faced impossible deadlines. To meet these deadlines, he brought work home. He looked hard at the numbers and found problems; the company and his job were in peril. If he were to lose his job, he would also lose his ability to pay his debts, his health insurance premiums, and his mortgage.
But something about home worried him more than paying his mortgage. John’s oldest daughter had come back to live with him. When she showed up at the doorstep, she was seeking refuge from an abusive relationship for her and for her two daughters. No escape seemed possible, however, from her addiction to painkillers. John was worried sick about his family.
Slumped in the living room sofa, John reflected about his future, the future of his family, the future of his granddaughters. Dejectedly, he looked at the unopened mail. He noticed the bills and set them aside. He also had a letter from his primary care doctor. He opened it. It was terse. He was not meeting disease control targets. He should look for a new primary care clinician.
There is nothing extraordinary about the story of John. I made him up from the stories of many of my patients. I’ve presented John’s story around the world; everywhere, clinicians respond: “Yes, I too know John” and “You just described a large part of my practice.” Patients have approached me at the end of my talks with “I am John,” “I am Joan,” or “You just told the story of my father.”
John is an archetype: the patient living in a complicated medical and personal situation that industrial healthcare seems unable to help, yet is ready to shame and blame. It is for patients like him that programs to engage, educate, and activate are developed — as if he was in trouble because of ignorance or lack of participation. He is the inspiration” for insurance schemes that target patients like him with financial penalties to make sure “he has skin in the game.” As if the futures of his granddaughters were insufficiently high stakes. He is the scapegoat for poor healthcare outcomes despite escalating healthcare costs.
But John is not the problem. Healthcare needs to care for John, not shame him, or get rid of him. Thinking of John’s situation as the problem of healthcare is like blaming the house fire on the smoke escaping through the windows. John is a sign.
Like the one depicted in a picture I found online. It showed a tired and soot-covered miner with, allegedly, the last canary used in an English coal mine. Miners would carry these canaries with them to serve as a signal of the air quality deep inside the mine; if the air were to become toxic, the canaries would become agitated and eventually stop singing. At this point, at the latest, the miners would abandon the mine.
Healthcare became toxic to John. Its responses to John’s problems could not and did not improve his situation. His lack of improvement, interpreted as noncompliance, should have been interpreted differently. John, the canary, had stopped singing. But in healthcare, it turns out, that this is too often thought to be the canary’s fault.
How can the care that Dr. Montori calls for in Why We Revolt help someone like John? Watch John’s Story: What Does Careful and Kind Care Look Like, from Dr. Montori’s nonprofit organization, The Patient Revolution.
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This essay first appeared in Dr. Montori’s book, Why We Revolt (Mayo Clinic Press).
Why We Revolt
Winner of the 2018 PenCraft Award for Literary Excellence, Why We Revolt peels back the curtain to expose the corruption and negligence present in the modern American healthcare system—and how, with focused collaboration, we can revolutionize the way our country approaches patient care.Shop Now