Bedside is a series about health care from a nurse's-eye view.
"What if we gave her some aloe vera gel?"
The question was from a thin woman, and though her query came out of desperation, her face was pinched with fury. She was a relative of the patient in the room, a young woman who was dying of an infection.
That's where gel, which the relative embraced as an herbal remedy, came in. It fell to me, the nurse, to explain why aloe vera could not cure the infection, could not save this patient's life. But what I was really doing was something we often fail to do in hospitals: facing the anger and fear that accompany impending death.
It's not easy to talk about death. President Obama acknowledged this reluctance when he tried to include reimbursement for end-of-life conversations in the Affordable Care Act. The conservatives' ease at recasting such efforts as government "death panels" shows how hard the topic of death is for many people.
There is a point of breakdown at which a body will irrevocably fail. In health care we understand that in terms of physiological details. What's hard for all of us is accepting the painful truth that people die.
The patient in this case had received a stem cell transplant from a matched donor to treat her cancer. She had been taking immune suppressants to keep the donated cells from attacking her own body. The challenge is that such patients are susceptible to infections that wouldn't trouble healthy people. That's what happened with this patient. She contracted a fungal infection, and despite our best efforts at treatment, it got into her brain.
For several weeks she had been asking for all curative treatment to stop, but her doctors kept saying it was too soon. At the point where I was assigned to her, the doctors had finally agreed that nothing more could be done to save her life. As a result of that decision the extended family had gathered to say goodbye. That was the group I walked in on when I took over the patient's care in the afternoon.
The relatives from far away had not seen the patient's sad and slow decline. They were not prepared to say goodbye, and they were angry. The doctors had given up on her, they said. Her husband wanted her to die. No one was trying hard enough to find the one thing that could save her. Maybe aloe vera gel would be the silver bullet.
I had been this patient's nurse often in the past, but not recently, so I didn't have solid answers for them. "Wait," I finally said as the questions came fast and furious, "I'm not putting you off. I need to read her chart so that I can accurately tell you what you want to know. I will come back."
I was lucky; I had time to sit down and make sense of the patient's treatment history, even though there wasn't a lot of sense-making to be done. Roughly 30 percent of patients are dead within a year of such stem cell transplants, and this patient fell within that group.
You can't tell a family only that, though, because there's no balm in it. And by balm I mean empathy for just how terrible it is for someone known and loved to die.
I went back to the room and again was lucky to have the time to really talk with the angry relatives. I told them the story of this young woman's cancer treatment, how she got high doses of chemotherapy to kill her cancer and the infusion of stem cells afterward essentially gave her a new immune system. I talked about immune suppression creating vulnerabilities to odd illnesses, like fungal infections. I told them the patient herself had been asking to go into hospice care long before her doctors assented.
I said that a body can get too broken to be repaired and, despite all our drugs and scans and cutting-edge procedures, sometimes we just can't fix someone, even if we ourselves helped create the problem that is killing her.
The aloe vera gel came up again, and I said it probably wouldn't hurt. The thin woman, now in the chair, her legs tightly crossed in front of her, waved my suggestion away with a quick flip of her wrist and I realized that the relatives weren't really intent on giving the patient aloe vera; what they needed was for someone in the hospital to understand how much they wanted this young woman to live, how desperate they were to reverse fate.
We can call this denial, hubris, fighting until the bitter end. But why not call it what it is? Being human and fearing death, the family could not, in the words of Dylan Thomas, stop raging against the dying of the light.
We read that famous poem as an exhortation: "Do Not Go Gentle Into That Good Night." I wonder if it is instead a reckoning of how very difficult it is to let life go; the poem was, after all, written about Thomas's own father. "Wise men at their end know dark is right," the poem tells us, but they and "good men," "wild men," "grave men" do not go gentle, because death inevitably brings regret for what might have been, what now will never be.
The idea that compensation be given for discussions about patients' health care choices at the end of their lives targeted this existential knot. It takes time to untangle the threads surrounding death — guilt, fear, anger and love — but it's work that needs to be done, by nurses and doctors, following the patient's preferences and physical reality. Because no matter how much we hate it, death will come.
I've seen a fair number of people die, and the truth is, some go gentle into that good night, but many do not, regardless of their intentions. For my patient it was the same. Her mind seemed to have acquiesced weeks before, but her body, so fragile and battered by disease, hadn't. A good friend of mine was her nurse the day she died. "I need to talk to you," she told me soon after the patient's passing. So long in coming and impossible to reverse, the end itself had been bloody, even gruesome. It was a hard memory for my friend, a seasoned oncology nurse, to bear alone.
I've never forgotten that afternoon in the hospital. Outside, day turned to dusk and then evening. The patient occasionally moaned, but was mostly silent. The thin woman in the chair was still angry, but as dark filled the windows outside the frustration in the room sublimated into a dull acceptance. We did not go gently into that good night, but we went, nonetheless.
Theresa Brown is an oncology nurse and the author of "Critical Care: A New Nurse Faces Death, Life, and Everything in Between."
A version of this article appears in print on 04/13/2014, on page SR8 of the NewYork edition with the headline: Providing the Balm of Truth.
