姜小白对《Being Mortal》的笔记(2)

“For those who had no interest in moving into such places—Alice Hobson, for instance—it became acceptable and feasible to remain in their own homes, living as they wanted to live, autonomously. That fact remains something to celebrate. There is arguably no better time in history to be old. The lines of power between the generations have been renegotiated, and not in the way it is sometimes believed. The aged did not lose status and control so much as share it. Modernization did not demote the elderly. It demoted the family. It gave people—the young and the old—a way of life with more liberty and control, including the liberty to be less beholden to other generations. The veneration of elders may be gone, but not because it has been replaced by veneration of youth. It’s been replaced by veneration of the independent self.”

“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.’