“They sent me out with hospice papers,” she said to my father. “What do you think about that?”
My father didn’t say anything for a moment. The nurse waited. She knew how to be silent.
“I think it may be best,” he said, “because I don’t want chemo.”
“What kinds of problems are you having?”
“Nausea,” he said. “Pain control. Grogginess. The medicine makes me too sleepy. I’ve tried Tylenol with codeine. I’ve tried Toradol pills. Now I’m on ketamine.”
He went on. “I woke up this morning and it was a big change. I couldn’t stand up. I couldn’t push the pillow up in the bed. I couldn’t handle a toothbrush to brush my teeth. I couldn’t pull my pants or socks on. My torso is becoming weak. It’s getting hard to sit up.”
“Hospice is about palliative care,” she said, about giving care to help manage these difficulties. She went through the services that Medicare would cover for my father. He’d have a palliative care physician who could help adjust medications and other treatments to minimize his nausea, pain, and other symptoms as much as possible. He’d have regular nursing visits plus emergency nursing support available twenty-four hours a day by phone. He’d have fourteen hours a week of a home health aide, who could help with bathing, getting dressed, cleaning up the house, anything nonmedical. There’d be a social worker and spiritual counselor available. He’d have the medical equipment he needed. And he could “revocate”—drop the hospice services—at any time.
She asked him if these were services he’d like to start now or think about.
“Start now,” he said. He was ready. I looked at my mother. Her face was blank.
The nurse practitioner got into the nitty-gritty: Did he have a DNR? A baby monitor or a bell for him to summon a caregiver? A 24-7 presence in the house to help?
Then she asked, “What funeral home do you want to use?” and I was divided between shock—are we really having this conversation?—and reassurance at how normal and routine this was to her.
“Jagers,” he said, without hesitation. He’d been thinking about it all along, I realized. My father was calm. My mother, however, was stunned. This was not going where she’d been prepared for it to go.
The nurse turned to her and, not unkindly but nonetheless all too clearly, said, “When he passes away, don’t call 911. Don’t call the police. Don’t call an ambulance company. Call us. A nurse will help. She will discard the narcotics, arrange the death certificate, wash his body, arrange with the funeral home.”
“Right now, we’re not thinking of death,” my mother said firmly. “Just paralysis.”
“Okay,” the nurse said.
She asked my father what his biggest concerns were. He said he wanted to stay strong while he could. He wanted to be able to type, because e-mail and Skype were how he connected with family and friends all over the world. He didn’t want pain.
“I want to be happy,” he said.
She stayed almost two hours. She examined him, inspected the house for hazards, sorted out where to place the bed, and figured out a schedule for the nurse and the home health aide to visit. She also told my father he needed to do just two main things. She figured out he’d been taking his pain medications haphazardly, tinkering with which drug he took at what dose, and she told him he needed to take a consistent regimen and log his response so the hospice team could gauge the effect accurately and help him find the optimal mix to minimize pain and grogginess. And she told him that he needed to no longer attempt to get up or around without someone helping him.
“I’m used to just getting up and walking,” he said.
“If you break your hip, Dr. Gawande, it will be a disaster,” she said.
He agreed to her instructions.
In the days that followed, it astonished me to see the difference the hospice’s two simple instructions made. My father couldn’t resist still tinkering with his medications, but he did it much less than he had and he kept a log of his symptoms and what meds he took when. The nurse who visited each day would go over it with him and identify adjustments to make. He’d been oscillating wildly, we realized, between severe pain and becoming so drugged he seemed drunk, with slurred, confused speech and difficulty controlling his limbs. The changes gradually smoothed the pattern. The drunken episodes all but disappeared. And his pain control improved, although it was never complete, to his great frustration and sometimes anger.