He was an adult, but young enough that the docs used a pediatric protocol to treat his cancer. It wasn't his age that stood out for most of us, though-it was his autism and mental retardation.
When the patient, whom I'll call Ben, first arrived on the floor, he sat in his room naked and played video games for hours on a handheld Xbox. His family was indigent and lived far away, so he didn't get many visitors.
When his mother called one day, I told her he'd developed a rash. She said that Ben had a latex allergy. Up-set that we'd been careless about such a detail, I posted a sign on Ben's door, replaced his regular gloves with latex-free ones, and removed the latex Foley catheter they'd placed on an earlier trip to the OR.
Ben was impaired enough mentally that he couldn't understand the idea of allergies. I'm sure he didn't even know the word "latex." Having such a dependent patient on an adult ward, without regular interaction with the family, seemed unsafe and scary.
But Ben stayed, and we found ways to structure his days and provide him with things he enjoyed. Someone donated a computer, allowing Ben to play the games he loved. Coloring books and markers kept him occupied for long stretches. Nothing made him happier than watching Family Feud.
We also established a few rules. He couldn't turn up the volume on his TV to blasting. Shouting out profanities-which he would do on walks-earned him an immediate sequestration in his room.
Chemotherapy couldn't put Ben's disease in permanent remission, so the medical team decided to give him an allogeneic stem cell transplant. Receiving someone else's stem cells was his only hope for a cure, but opinions about the decision strongly diverged. Some nurses felt that Ben deserved the same chance as anyone else. Others, including me, were uncomfortable giving such a difficult treatment to a patient who wouldn't understand what he was enduring, or why.
The question of whether Ben's family could care for him adequately after the transplant also remained unanswered. He would need a carefully controlled drug regimen for months, possibly years. His mother showed genuine concern for him, but also seemed stretched beyond her limits. If he didn't receive the medications he needed at the right times, he'd be more likely to get sick with graft-versus-host disease (GVHD) or an infection.
Still, we transplanted him, and in the months following he spent more time in the hospital than out. An infection in his central line, a little bit of GVHD-these were what brought him back.
I was Ben's nurse during one of those admissions, and the dressing covering his central line needed to be changed. He had a fever and was feeling so lousy that he even ignored his beloved video games. I tried to be gentle, but it hurt when I removed the last bit of the old dressing. He yelled out an "ouch!" that was more a wail than a word.
That night I left work almost in tears. This may be the end of his life, I thought, and he's spending it with strangers who, in the name of caring for him, are hurting him.
Ben made it home that time, but he died within a year of his transplant. He got pneumonia he couldn't beat, despite our best rescue efforts using a RotoProne bed in the ICU.
Many of the nurses on the floor were deeply sad when he died, and I was sad, too, but also worried. I couldn't shake the feeling that our care had been ethically compromised. Ben's inability to understand even the basics of his situation, combined with his lack of family support, made it seem that we were in effect imprisoning him and torturing him.
I talked it over one day with an MD friend-in fact, the intensivist on shift when Ben was struggling to survive on the RotoProne bed. I described my ambivalence, my concerns about our treatment decisions. He listened and then said, "It's standard of care."
I heard that phrase with relief, as a way out of my ethical confusion. "Standards of care" exist to protect patients like Ben. It's predicated on the idea that everyone deserves the same chance, that all patients must receive standard care because apportioning treatment on the basis of mental impairment is a slippery slope. That way lies eugenics, forced sterilization, and involuntary euthanasia.
It's problematic to use a therapy as notoriously risky as an allogeneic transplant to treat an adult who can't understand what's being done to him. But according to standards of care, not treating such patients would be immoral.
How, then, does one ultimately make the right medical choice? I may know the ethically correct answer-but I also know that if a patient like Ben came through our doors tomorrow, I would feel just as strongly that aggressively treating him was wrong.