Last year, I treated myself to a one-year subscription to The New Yorker. It didn’t really sink in that the magazine comes weekly until I had a backlog about six inches deep. I let the subscription expire recently in order to work through the giant pile next to my bed. I’ve gotten to August 2010.
One article, Letting Go: What should medicine do when it can’t save your life? by Atul Gawande, stuck with me enough that I’ve begun to mention it to family and friends. The passage below resonated in particular.
The evening before surgery, father and daughter chatted about friends and family, trying to keep their minds off what was to come, and then she left for the night. Halfway across the Bay Bridge, she recalled, “I realized, ‘Oh, my God, I don’t know what he really wants.’ ” He’d made her his health-care proxy, but they had talked about such situations only superficially. So she turned the car around.
Going back in “was really uncomfortable,” she said. It made no difference that she was an expert in end-of-life discussions. “I just felt awful having the conversation with my dad.” But she went through her list. She told him, “ ‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’
“I would never have expected him to say that,” Block went on. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that, in order to save his life, they would need to go back in. But he had already become nearly quadriplegic and would remain severely disabled for many months and possibly forever. What did she want to do?
“I had three minutes to make this decision, and, I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the O.K. to take him back to the operating room.
“If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment, because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he survived only to go through what proved to be a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided.
In light of a number of close – but not too close – terminal illnesses and deaths in my circle of being, I’ve begun to think more about how I, and those important to me, define quality of life and how the definition changes as I advances through different stages of life.
When I ask people how to know when it is time to say good-bye, most people just say they do not want to be a burden on others. But, that’s not really getting at the issue. I’m not only interested in my caregivers’ quality of life, but also in my own. What physical, mental, or emotional status would make life not worth living from my perspective? What simple pleasures keep me going? What’s my chocolate ice cream and football on television?