Too many times already, I’ve written that what I love most about the practice of medicine is that there is always more to learn. Every time I think, “I’ve got this”, I am tripped up by something new. A corollary to this is that I always have things to learn from my peers.
Over the years, I have known 100’s of people who have not taken the medications I have prescribed. Dr. McBride’s essay gave me new insight. I’ve followed her work for a while and am looking forward to reading her debut book, Beyond the Prescription: A Doctor’s Guide to Taking Charge of Your Health, which was published by Simon & Schuster on August 11.
Adam Cifu
Daniel was one of my favorite patients. (Doctors don’t like to admit we have favorites, but we do.) He was in his mid-60s and always on time. He ate well, exercised, and took his vitamins. We had an easy rapport. He was open to suggestions and grateful for our visits. He was, by every measure, a “good” patient.
Except that he wouldn’t do one thing I’d urged him to do for two years.
A while back, Daniel admitted that he was drinking too much. His wife had called me on a gray February morning, concerned about his late nights drinking bourbon and Coke alone. He had a history of depression, so I pushed him on it and, reluctantly at first, he agreed to give up drinking. He knew quitting would help his atrial fibrillation and his sleep apnea. When he was sober, and I asked him how he was remaining so, he told me it was daily exercise, but mostly it was his wife’s threat of divorce.
But sobriety didn’t help Daniel’s depression. Most days he felt irritable and hopeless. On the worst days, he had trouble getting out of bed or motivating himself to shower. Despite meditating and journaling and connecting with friends, he still felt melancholy. His PHQ-9 score was consistently in the mid-teens. It was time for an antidepressant. “Not as a sign of failure,” I told him, “but as another tool in the tool kit.” He promptly declined.
So I did what doctors do. I explained the pharmacology and ran through the latest data on SSRIs. I walked him through potential side effects and reassured him about the stuff he’d read online. I offered the lowest starting dose and framed it as an experiment: “We’ll try it for a month. We can stop any time.” He continued to politely decline.
One February morning, he sat across from me, his spirit clearly dwindling. After a two-year campaign of trying to help him, I shifted in my chair and asked him a different question. Instead of “Why won’t you take this medication?” I asked, “What would it mean for you if you did?”
He paused and looked at his shoes. I thought he might cry. Then he told me about his sister’s lifelong struggles with mental illness, punctuated by hospitalizations and his parents’ frantic worry about her. Growing up, his family had been built around protecting her. His sister was the one with mental illness, not him. And he wasn’t like her. Her marriage had fallen apart. She drank. She had red hair (his was brown). Most importantly, he had built a life that was reliable, sturdy.
It dawned on me: the pill I was offering wasn’t just another prescription. It was a clash with his concept of himself. It meant becoming her. The argument I’d been making for two years had been answering questions he wasn’t asking in the first place.
Doctors call patients like Daniel noncompliant—or, as we’ve softened it over time, “non-adherent.” About half of medications prescribed for chronic conditions aren’t taken as prescribed, and usually doctors attribute that to a patient’s lack of education or health literacy or, quietly, among ourselves, “they’re difficult”. Our first therapeutic response to refusal is repetition. Then we say the same thing slower, sometimes with a handout. When all of that fails, we document it and move on.
But patients bring narratives to their medical decisions the way they bring their personalities into the exam room. When a doctor’s advice collides with a patient’s concept of self, the advice loses every time, even when it’s medically correct. In Daniel’s case, the medication was never the obstacle. It was the story he’d been telling himself since his teenage years, and no medical logic could rewrite it.
His internal narrative turned out to be more relevant than his lab test result or his PHQ-9 scores. It was the data I needed most to help him. And the only way to collect it was time, trust, and the kind of rapport that happens only when doctors and patients can sit in conversation. The patient’s story — and the invisible veil of self-preservation — isn’t measurable in a test tube.
I told him I completely understood.
A few months later, toward the end of a visit about knee pain, Daniel casually asked what dose he would start with — if he started the antidepressant. I’d like to tell you that my master’s degree in pharmacology is what clinched the deal. Or maybe it was one of these sentences I tossed at him that finally took hold (“I’m not calling this mental illness.” “I’m treating you.”) He told me what changed for him was the frame. The story in his mind had shifted from “I am becoming my sister.” to “This depression isn’t the real me.”
A few months after starting the antidepressant, Daniel’s mood lifted. He was no longer waking up filled with dread. His negative self-talk wasn’t as loud, and instead of surrendering to it, he could reason with it. He wasn’t sure it was the medication that was helping, because so much else had changed at the same time — he’d adopted a dog and started tending his garden — so how could he possibly know what was what?
I didn’t know either, I told him. But let’s keep doing all the things together. He agreed. And it reminded me: over 25 years of patient care, I’ve learned that a refusal to receive care is less likely a call for more information than a sign of something below the surface — a family role, an old fear, a private rule about what kind of person takes this kind of pill. Sometimes the story behind the refusal is the one I need to hear, because my advice is “non-adherent” to the plotline. And sometimes we never know why someone changes their mind.
Dr. Lucy McBride, MD, is a primary care physician in Washington, DC, and writes the newsletter Are You Okay? on Substack.
Photo by Christina Victoria Craft on Unsplash
Wow: “A refusal to receive care is less likely a call for more information than a sign of something below the surface.”
YOU wrote that. Then you stopped one layer short of it.
Daniel didn’t reject the pill. He rejected the premise -that a PHQ-9 in the mid-teens is a diagnosis and not a symptom. Two years explaining pharmacology to a man whose body was pointing somewhere else.
Then look what actually happened. He got sober. Adopted a dog. Started tending a garden. Mood lifted. And you file that under “so much else changed, how could we know what was what?” - treating the finding as a confounder.
That’s the paradigm talking. Cure by the pen (a quip by many of my physician friends). So captured by it that practitioners can’t hear the patient in front of them, and can’t hear themselves when they narrate the actual cure and call it noise.
The story under the refusal isn’t always a family role or an old fear. Sometimes it’s a patient who knows there’s a cause and won’t have it papered over. The individual human.
That’s not non-adherence. That’s the only person in the room living in the body.
I’m curious about when this patient’s SSRI might be stopped, given that there are known confounders—Dr. McBride suggests they will stay the course. I’m a lay person, so all I’ve read about anti-depressants recently is that people take them for years despite the FDA-approval data covering only eight weeks, that the meds sometimes dull even pleasurable feelings, that a percentage of the patient population can’t stop taking them without experiencing withdrawal, and that researchers haven’t figured out how to successfully taper to zero for these people, who end up forming groups online to figure it out themselves. (Is it time for a Sensible Medicine article to rebut the new reputation anti-depressants have acquired, or do I have this about right?)