Beginning to talk about the end
It's the conversation no one wants to have. But on a chilly spring afternoon, 18 people have come to a small office building to start to have it. They are older residents of Cambridge and surrounding towns, and they're meeting to talk about death — "but not so much about death," says one of the presenters, paraphrasing the writer and physician Atul Gawande, "as about living a good life right up until the end."
The meeting is held at Cambridge Neighbors, a nonprofit group that helps people stay in their homes, and stay connected to their communities, as they get older, with programs ranging from wellness and exercise classes, to book groups, to assistance with transportation and grocery shopping.
Today's presentation, "Aging Your Way," is led by a panel of four members of Cambridge Neighbors who speak candidly and movingly about having met together several months ago, at one of their homes, to talk about what each of them would, and wouldn't, want to happen at the end of their lives.
"I'm not going to die tonight, or next Tuesday, or anytime soon," says one presenter, "but I wanted a chance to think about and express my wishes. And then I can go on living my life."
Each of the four women started by filling out a workbook called "Your Way," which posed a series of detailed questions. What mattered most to them in their lives today — which activities, which values, which beliefs? If they were someday to become incapacitated (unable to recognize or communicate with people), would they want medical care to prolong life or just to provide comfort? Would they want artificial nutrition and hydration, or not? How would they feel about pain management? How important would it be to remain clear-headed? How important to die without lingering? To die at home?
Once they'd thought about the questions, the four of them arranged to meet together, and they listened to one another's answers without commenting or interrupting. "The process was so, so helpful," one says. "People articulated things I'd never thought about. Listening made me rethink some of my answers."
Another echoes this. "I thought I wouldn't want my life prolonged under any circumstances, but I realized that if it were a matter of keeping me alive for a little while so someone I loved could come say goodbye, I would want that."
And another: "There was a question about would you want a spiritual or religious counselor. I realized my answer is yes, absolutely, but with a caveat: no dogma."
After meeting in their small group, the women felt prepared to begin sharing their wishes with family or friends — the people they would trust to be effective advocates, if they couldn't speak for themselves. "It's partly about trying to lighten the burden for your family," one woman says. "It can be really hard to make decisions for someone if you don't understand what their own choice would have been." She adds, "None of this is final. I can keep revising as my life changes."
Listening to these women talk, I'm impressed at how unafraid they seem. They are holding still and looking at the stuff most of us avoid. No one here has any illusion that dying is an entirely controllable process. They just believe that thinking about it, talking about it, is better than not thinking and not talking about it. They encourage their fellow Cambridge Neighbors to form their own small groups to start having these conversations. "It's good to start to look at it together," one woman says. She smiles. "Because the reality is, none of us has ever aged before."