As a person’s end draws near, there comes a moment when responsibility shifts to someone else to decide what to do. And we’d mostly prepared for that moment. We’d had the hard conversations. He’d already spelled out how he wanted the end of his story to be written. He wanted no ventilators and no suffering. He wanted to remain home and with the people he loved.
But the arrow of events refuses to follow a steady course and that plays havoc with a surrogate’s mind. Only the day before, it seemed he might have weeks, even months. Now she was supposed to believe that hours might be a stretch? My mother’s heart was breaking, but as we talked, she recognized the pathway we risked heading down, and that the kind of life intensive care would preserve for him was far from the one he wanted. Endings matter, not just for the person but, perhaps even more, for the ones left behind. She decided to tell them not to intubate him. I called my sister and caught her as she was about to board her train into work. She was not ready for the news, either.
“How could it be?” she asked. “Are we certain he can’t return to how he was yesterday?”
“It seems unlikely,” I said. In few families does everyone see such situations the same. I arrived the quickest at the idea that my father was coming to the end, and I worried most about the mistake of prolonging his suffering too long. I saw the opportunity for a peaceful end as a blessing. But to my sister, and even more my mother, it didn’t seem certain at all that he was at the end, and the mistake that loomed largest to them was the possibility of failing to preserve his life long enough. We agreed not to let the hospital do anything further to resuscitate him, while hoping against hope that he’d hang on long enough for my sister and me to get there to see him. We both searched for flights as they moved him to a private hospital room.
Later that afternoon, my mother called as I sat at an airport departure gate.
“He’s awake!” she said, over the moon. He’d recognized her. He was sharp enough to even ask what his blood pressure was. I felt abashed for believing that he wouldn’t come to. No matter how much one has seen, nature refuses predictability. More than this, though, what I kept thinking was: I’m going to be there. He may even be all right for a while longer.
He was alive just four more days, as it turned out. When I arrived at his bedside, I found him alert and unhappy about awaking in the hospital. No one listens to him, he said. He’d awoken in severe pain but the medical staff wouldn’t give him enough medication to stop it, fearing he might lose consciousness again. I asked the nurse to give him the full dose he took at home. She had to get permission from the doctor on call, and still he approved only half.
Finally, at 3:00 a.m., my father had had enough. He began shouting. He demanded that they take out his IVs and let him go home. “Why are you doing nothing?” he yelled. “Why are you letting me suffer?” He’d become incoherent with pain. He called the Cleveland Clinic—two hundred miles away—on his cell phone and told a confused doctor on duty to “Do something.” His night nurse finally got permission for a slug of an intravenous narcotic, but he refused it. “It doesn’t work,” he said. Finally, at 5:00 a.m., we persuaded him to take the injection, and the pain began to subside. He became calm. But he still wanted to go home. In a hospital built to ensure survival at all costs and unclear how to do otherwise, he understood his choices would never be his own.
We arranged for the medical staff to give him his morning dose of medication, stop his oxygen and his antibiotics for his pneumonia, and let us take him. By midmorning he was back in his bed.
“I do not want suffering,” he repeated when he had me alone. “Whatever happens, will you promise me you won’t let me suffer?”
“Yes,” I said.
That was harder to achieve than it would seem. Just urinating, for instance, proved a problem. His paralysis had advanced from just the week before, and one sign was that he became unable to pee. He could still feel when his bladder became full but could make nothing come out. I helped him to the bathroom and swiveled him onto the seat. Then I waited while he sat there. Half an hour passed. “It’ll come,” he insisted. He tried not to think about it. He pointed out the toilet seat from Lowe’s he’d had installed a couple months before. It was electric, he said. He loved it. It could wash his bottom with a burst of water and dry it. No one had to wipe him. He could take care of himself.
“Have you tried it?” he asked.
“That would be no,” I said.
“You ought to,” he said, smiling.