“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as nursing home reformers deploy staff to help people with severe disabilities. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while—not on whether Cox’s life would be longer or shorter. Nonetheless, when she was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Hospice is not an easy choice for a person to make. A hospice nurse enters people’s lives at a strange moment—when they have understood that they have a fatal illness but not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” Creed said. When she first encounters her patients, many feel that their doctors have simply abandoned them. “Ninety-nine percent understand they’re dying, but one hundred percent hope they’re not,” she told me. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’”
That was how she started with Dave Galloway, whom we visited after leaving Lee Cox’s home. He was forty-two years old. He and his wife, Sharon, were both Boston firefighters. They had a three-year-old daughter. He had pancreatic cancer, which had spread; his upper abdomen was now solid with tumor. During the past few months, the pain had often become unbearable, and he was admitted to the hospital several times for pain crises. At his most recent admission, about a week earlier, it was found that the tumor had perforated his intestine. There wasn’t even a temporary fix for this problem. The medical team started him on intravenous nutrition and offered him a choice between going to the intensive care unit and going home with hospice. He chose to go home.
“I wish we’d gotten involved sooner,” Creed told me. When she and the hospice’s supervising doctor, JoAnne Nowak, evaluated Galloway upon his arrival at home, he appeared to have only a few days left. His eyes were hollow. His breathing was labored. Fluid swelled his entire lower body to the point that his skin blistered and wept. He was almost delirious with abdominal pain.
They got to work. They set up a pain pump with a button that let him dispense higher doses of narcotic than he had been allowed. They arranged for an electric hospital bed, so that he could sleep with his back raised. They also taught Sharon how to keep Dave clean, protect his skin from breakdown, and handle the crises to come. Creed told me that part of her job is to take the measure of a patient’s family, and Sharon struck her as unusually capable. She was determined to take care of her husband to the end, and perhaps because she was a firefighter, she had the resilience and the competence to do so. She did not want to hire a private-duty nurse. She handled everything, from the IV lines and the bed linens to orchestrating family members to lend a hand when she needed help.
Creed arranged for a specialized “comfort pack” to be delivered by FedEx and stored in a minirefrigerator by Dave’s bed. It contained a dose of morphine for breakthrough pain or shortness of breath, Ativan for anxiety attacks, Compazine for nausea, Haldol for delirium, Tylenol for fever, and atropine for drying up the wet upper-airway rattle that people can get in their final hours. If any such problem developed, Sharon was instructed to call the twenty-four-hour hospice nurse on duty, who would provide instructions about which rescue medications to use and, if necessary, come out to help.
Dave and Sharon were finally able to sleep through the night at home. Creed or another nurse came to see him every day, sometimes twice a day. Three times that week, Sharon used the emergency hospice line to help her deal with Dave’s pain crises or hallucinations. After a few days, they were even able to go out to a favorite restaurant; he wasn’t hungry, but they enjoyed just being there and the memories it stirred.
The hardest part so far, Sharon said, was deciding to forgo the two-liter intravenous feedings that Dave had been receiving each day. Although they were his only source of calories, the hospice staff encouraged discontinuing them because his body did not seem to be absorbing the nutrition. The infusion of sugars, proteins, and fats made the painful swelling of his skin and his shortness of breath worse—and for what? The mantra was: live for now. Sharon had balked, for fear that she’d be starving him. The night before our visit, however, she and Dave decided to try going without the infusion. By morning, the swelling was markedly reduced. He could move more, and with less discomfort. He also began to eat a few morsels of food, just for the taste of it, and that made Sharon feel better about the decision.
When we arrived, Dave was making his way back to bed after a shower, his arm around his wife’s shoulders and his slippered feet taking one shuffling step at a time.