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Talking About How You Want To Die Before It’s Too Late

BOSTON — Death isn’t something most of us want to spend much time thinking about. But Ellen Goodman would like to change that. You probably know her as a former Pulitzer Prize-winning columnist for The Boston Globe, but since she retired from the paper about three years ago she’s co-founded a project meant to encourage people — young and old — to talk about how they want to die before it’s too late.

Ellen Goodman (Courtesy The Conversation Project)

Ellen Goodman (Courtesy The Conversation Project)

Goodman says she didn’t have that conversation before her mother’s decline and death last year. “My mother was unable to decide for herself what she wanted for lunch, let alone what she wanted for medical care,” Goodman recalled. “And so it fell to me to make medical decisions for her.”

That got Goodman and some of her colleagues to start sharing and collecting stories of what they call “good deaths” and “bad deaths.” Their story-gathering has grown into The Conversation Project, described as “estate planning for the soul.” When Goodman spoke with WBUR’s All Things Considered host Sacha Pfeiffer, she explained how she defines a “good death.”

Ellen Goodman: I would say it’s, among other things, a pain-free death, and one in which you are not subjected to the kinds of aggressive care that you would choose not to be. We know that 70 percent of people want to die at home. And we know that 70 percent of people are dying in institutions, hospitals and, God help us, ICUs. So I would say a good death is dying in the way that you would choose, whatever it is.

Sacha Pfeiffer: And why do you think more people don’t have these conversations? Is it something cultural? Is it fear?

I think there are two things. One, the greatest power on earth is inertia. So if we can have these conversations tomorrow, manana, better than today. And two, it’s a powerful taboo, still, talking about dying or how you want to live at the end of your life. There’s a kind of conspiracy of silence around this, particularly in parents and adult children. Parents don’t want to worry their children, children don’t want their parents to think they think they’re about to die. And in that conspiracy of silence, we often leave each other lonely at the end, and we often leave survivors — our children — uncertain, depressed and guilty about whether they did the right thing.

What conversation do you wish you had had with your mom before she died, and probably long before she got sick or anywhere close to dying?

Well, my mom and I talked about everything. I once described her in a column as, “she’s the person who will listen to your problems until you’re bored with them.” But the closest we had had to having a conversation about what she wanted at the end of life was her pointing to someone or telling me a story and saying, “If I’m like that, pull the plug.” But, of course, there was no plug to pull.

It’s never quite that simple.

It’s never quite that simple. And I suppose I wish I had had her voice in my head as I was making those decisions.

What kind of things were you having to decide without being able to ask her what she wanted?

I would be sitting at the office, and I’d get a call saying that my mother had pneumonia, and did I want to give her antibiotics, which is like saying, “Hmm, do I want my mother to be cured of this pneumonia or to die,” and I would say, “Could I call you back?” And at least two or three times I went through that process before my mother actually died what we call naturally.

Do you think that sometimes people feel this reluctance to talk about what they want at the end of their life, or maybe even a revulsion to talk about it, when in fact the conversation might not be as difficult as they think it’s going to be?

In fact, the conversations, we’ve learned, are some of the richest that they may ever have — and the most intimate. But there is a lot of fear about starting it.

For people who are afraid or uncomfortable starting that conversation, how do you suggest they do it? What should the start of that conversation sound like?

Well, as the parent of an adult child and also having been through this with my mother, it seems to me that you say to that parent, “Hey Mom, hey Dad, I’m going to need your help. I may have to make decisions for you. And I need your help now.” So we aren’t saying to each other, you know, “Tell me, if your left eye and your right elbow are gone, do you want to live or die?” It’s not a series of medical check-offs. We want to begin much earlier, which says, who are you? Not what’s the matter with you, but what matters to you? Tell me how you’ve lived and how you want the end of your life to fit into that narrative, and I’ll know what to do.

Ellen, some of the stories you’ve collected include people describing how their loved ones planned their deaths right down to the memorial service, including things like the brand of champagne they wanted for their toast, the hymns they wanted sung. So it seems that this isn’t just about making sure you’ve written up a Do Not Resuscitate order, but actually seeing that there could be some measure of joy in a death.

I’m wary of going down the joy-in-death road. But we asked people, “I want mine to be — fill in the blank.” And people said, “I want mine to be peaceful,” of course, was a big one. “I want mine to be easy on my family.” “I want mine to be joyful.” “I want mine to be pink,” someone said. And just to be provocative, I said, “I want mine to be as far from now as possible.” But I think it can have the quality of completion about it. That if you have finished your life in the way that you’ve led it, and you have left the people who you love feeling OK about it — in pain and loss but OK about it — that can be quite a remarkable thing.

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