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Treating a Patient With a Nightmarish Condition

In my dreams she was a monster out of Greek mythology: eyes unseeing, skin flayed, mouth bleeding crimson; a howling mountain of pure pain made flesh that I alone was to face. I would awaken sweating before my 4 a.m. alarm, dreading the day’s tasks, fighting bile and self-hatred on every step of my icy walk across the Charles River to the hospital. During the day, I was the monster, her torturer.

The innumerable injustices I visited upon her body in the name of treatment haunted me. I restrained her flailing limbs and hunted for her femoral artery with needles each time she spiked fevers.

I murmured words of apology, calling her honey, sweetie, my friend, doubting she could ever hear me, knowing the shameful inadequacy of every syllable of my susurrations. We poured powerful sedatives into her veins in desperate attempts to dampen her agony, antibiotics to combat the constant blood infections, drugs to suppress her seizures.

She was young and strong, fought hard no matter what we did, tried to pull the breathing tube from her throat each time she approached sufficient consciousness to permit purposeful movement. Her eyelids were sewn shut to protect her eyes from desiccation, but this did not prevent tears from rolling down her face. In the burn surgery intensive care unit, she lived out this nightmare in a heated cage made of what looked and felt like plastic wrap: a necessary intervention, for she had lost every last bit of her skin.

Before her illness she had been a student with a diagnosis of bipolar disorder, dutifully swallowing an antipsychotic medication; then a mild rash and swollen lips turned into toxic epidermal necrolysis syndrome, the one-in-a-million, dreaded pharmacological complication that caused her skin to bubble up and melt away. She was in her early 20s — younger than I was — but nobody knew if she would live; nobody remembered seeing a case this severe. Her only chance was for us to keep her alive until her body could regrow the layer of skin that she had lost.

I thought often, during those days, of Dax Cowart, a Vietnam veteran who suffered devastating burns after a gas explosion in the 1970s, and who endured 14 months of agonizing treatment that he did not want. His case, a mainstay of medical ethics seminars, was notable for the fact that he tried to refuse treatment — rationally, persistently and articulately — and was denied that right over and over again by his doctors. He survived, married, went to law school and continued to argue that his doctors should have respected his desire to decline treatment, should have allowed him to die. His case was used in the burgeoning patient’s rights movement to promote the primacy of autonomy among the principles of medical ethics.

In my estimation, my patient’s situation was even worse than his. Throughout the time I cared for her, she remained sedated and on a ventilator, meaning that she would have been unable to even vocalize a desire for us to stop trying, a desire I felt sure I would hold in her position. At the end of my month on the burn surgery service, her status, in the words of my attending, “stably unstable,” I fled. I did not check her chart or press colleagues for updates the way I had done for so many patients I’d cared for before her. I was certain that she would die, just as I was certain I had helped make her last weeks on Earth an unbearable, undignified, unrelenting horror show.

Three years later almost to the day, at another hospital in the middle of an otherwise uneventful night on call, a familiar name appeared on the emergency room dashboard. Though my patient’s appearance had changed — she was at once smaller and larger than I remembered — I recognized her in an instant, and when she wheeled herself in and stood on shaky legs to make her way to the exam chair, I told her who I was. I said I knew she wouldn’t remember me but that I had been one of her doctors during her first month in the hospital, and told her how overwhelmed I felt bearing witness to how much she had recovered.

“I think I’d like to hug you,” she said in a gentle and musical voice, and when she did so her new skin was soft and shiny, like satin.

We talked for an hour, her fiancé open-mouthed in the chair next to her, my pager mercifully silent, her whole story spilling out in the middle of the night. Before she was ill, she told me, she was planning to go to medical school; now, she wanted to talk to medical students about her experience as a patient.

She recounted the numerous and surprising consequences of her illness: her ongoing pain, the difficulties she encountered trying to find doctors who weren’t afraid to treat a patient with such a complex history, other doctors who accused her of seeking painkillers. She explained that after all she went through, her doctors had rescinded the diagnosis of bipolar disorder. She detailed the operations she’d had to replace the membranes of her eyes. She was witty — funny, even — showing me a picture of the son she had a year ago (“my miracle”), describing the panic that flared while she was undergoing a bladder catheterization shortly after his birth.

We moved easily between laughter and tears. She had always wanted to meet the people who took care of her and dreamed of going to the unit to see everyone, now that her eyes were open, but worried about what being back in that space would do to her fragile emotional recovery.

Then: “The doctors at the first hospital wanted to put me on a morphine drip,” she said. “They wanted to give up.”

I took a deep breath in. “Did you ever wish they had?” I asked, fearful of the answer. “Do you ever wish we had stopped?” But she shook her head. She remembered no details beyond going to the emergency room with a high fever and a rash, wasn’t even sure she would recognize the unit where she had lived for over three months.

“I really don’t think I woke up until rehab,” she said. And now she couldn’t imagine never having had her son; planning her wedding with her fiancé. Whatever we had put her through — the consequences she was still going through — it was worth it to her to be with them.

We moved on to the reason for her visit, and I was able to be her doctor again: I diagnosed an infection, treated her pain, took extra care to make sure she would get the specialty follow-up that she needed. “Thank you for listening to me,” she said, hugging me again, and then she was gone, our chance reunion at an end. Emerging from the room, I felt a bit lighter, having started to shed a burden I hadn’t realized I still carried.

The next morning as I prepared to leave the hospital, I felt at once raw and healed, exposed and protected. The doors opened before me and, blinking, I stepped through, tilting my chin to feel the cold wind and the warm winter sunlight on my face.

Alessandra Colaianni (@alessacolamd) is an otolaryngology-head and neck surgery resident in the department of otolaryngology at Harvard Medical School.

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