End-of-Life Choice, Palliative Care and Counseling

Posts TaggedCoversation Project

How Do You Want It to End?

By Paula Span
The New York Times
August 17, 2012

Among the many things that Ellen Goodman has done — written a widely syndicated column, published books, won a Pulitzer Prize for commentary, given probably hundreds of talks on topics from friendship and feminism to bioethics — is this familiar job: She’s been a family caregiver.

She traces her latest mission, leading a new campaign called the Conversation Project, to her role as “designated daughter” for her mother, who died five years ago at age 92. “She had dementia and was no longer able to decide what she wanted for lunch, let alone medical decisions,” Ms. Goodman told me in an interview.

“My mom and I talked about everything, but we’d never had a conversation about what she wanted at the end of life that went any deeper than, ‘If I’m ever like that, pull the plug.’ Then there was a long decline,” Ms. Goodman said ruefully, “and no plug to pull.”

Some decisions seemed clear to her. When doctors, suspecting cancer, suggested a spinal tap, “the idea that they’d put her through a painful test in order to discover something she would not treat — that was nuts.” But when Ms. Goodman had to decide whether to authorize antibiotics to treat her mother’s pneumonia, she felt less certain.

“A couple of times I answered yes when I probably shouldn’t have,” she said. “I very much wished I had talked to her about it when she still could say what she wanted.”

The Conversation Project, whose Web site made its debut on Wednesday, aims to encourage such discussions. It grows out of meetings Ms. Goodman convened in Boston, starting in 2010, with medical experts, clergy and fellow media people. “It’s an attempt to get people’s end-of-life wishes expressed and respected — that’s the shorter-than-Twitter description,” she said.

Americans are perennially urged to have those talks and to codify the results in advance directives. There’s National Healthcare Decisions Day each April. And the Five Wishes effort, which dates to 1997. But all such efforts have proved largely unsuccessful.

Last year, a study in The Journal of the American Medical Association, involving 3,300 Medicare beneficiaries who died over nine years (mean age: 83), found that fewer than 40 percent had written a “treatment-limiting advance directive.” In a 2006 Pew Research Center survey of end-of-life attitudes, those with a “living will” had more than doubled since a similar 1990 report, but they still represented only 29 percent of respondents.

Perhaps that’s because most advocates never really explain how to go about these discussions. What, exactly, do you say? When’s the right time? “These are tender subjects,” Ms. Goodman said.

The starter kit on the Conversation Project Web site offers both reassuring hand-holding and concrete topics to tackle. It even suggests wording: “What do you feel are the three most important things that you want your friends, family and/or doctors to understand about your wishes for end-of-life care?”

The kit helps measure the intensity of people’s feelings. Where do you fall, on a five-point scale, between “I’m worried that I won’t get enough care” and “I’m worried that I’ll get overly aggressive care”? It also provides advance care planning forms with which to document an individual’s decisions.

ABC News has joined the Conversation Project and will broadcast a “World News Tonight” segment on end-of-life conversations next week.

“I do think we’ve hit a tipping point,” Ms. Goodman said, pointing out that the baby boomers now watching their parents age have been forces for change throughout their lives.

“This is a subject we’ve been slow to grapple with,” she said. “And I think people really are ready.”