"There's a wonderful line from The Onion," says Ellen Goodman, a Pulitzer-prize winning journalist quoting the satirical newspaper: "Death rates hold steady at 100 percent."
Satire being what it is, the joke may reveal something about how we face the inescapable fate. "You look at the obit pages in our country, and they all say 'died from...'," Goodman says, as if you could escape death by defeating disease. "In a highly technological society, people lose a kind of sense of the life cycle. They think we're in charge of it, and they have more trouble thinking of it as a natural part of life that should be talked about."
Given her own experience and her journalistic sense of a movement primed for a platform, Goodman, 72, aims to change that. Last year, in coordination with a nonprofit called the Institute for Healthcare Improvement, she launched The Conversation Project, a Boston-based public education campaign to get people talking about the ultimate elephant in the room.
According to the project's national survey released last week, about 9 in 10 Americans want to discuss their and their loved ones' end-of-life care. But roughly 3 in 10 Americans have actually done so. "It's always too soon until it's too late," Goodman says.
Asked why they don't broach the issue of their own end-of-life care, 29 percent of the more than 2,000 respondents said they don't need to worry about it yet, 23 percent said they aren't sick yet, 21 percent felt uncomfortable addressing the issue and 19 percent don't want to upset their loved ones. And yet, 20 percent said they are waiting for someone else to initiate the conversation, 48 percent would welcome the chance to talk about their end-of-life care and 41 percent said that while it wouldn't be easy, they'd still have the talk.
"Everybody is trying to protect everybody else," Goodman says. "Elderly parents are trying to protect their adult children from worrying ... children are trying to protect parents from the idea that they're ever, ever going to die and, by the way, we all know what's going on – it's just that we're not sharing it," she says. "In this way of protecting each other, we can actually leave each other feeling very alone."
It was about six and a half years ago when Goodman became the primary decision maker for her mother, then ailing from dementia. "My mom was one of those people who could talk about your problems until you were bored with them," Goodman writes on the organization's website. "We talked about everything except one thing: how she wanted to live at the end of her life." All Goodman had to go on was her mother's rare reference to someone fastened to a feeding tube or life support: "If I'm ever like that, pull the plug," she told her daughter.
"When the time came, there was no plug to pull. There rarely is," Goodman says. Instead, there were myriad other decisions afforded by advanced medical technology, and Goodman wished she could confidently honor her mother's wishes.
[Read: Managing Life as a Caregiver.]
And so today, The Conversation Project advocates having "the conversation," although there's not one approach or even one conversation.
Just as every family is different, each conversation takes its own course. But the group provides a starter kit to help people consider when and where to discuss the subject and key topics to cover. A scale of 1 to 5, for example, helps people identify the extent to which they want to be surrounded by loved ones at the time of death, whether quality of life supersedes quantity of years and whether they are more worried about getting insufficient or overly aggressive care. It also offers ice breakers with prompts like, "I need your help with something," and supportive tips like, "You don't have to steer the conversation; just let it happen."
Having found so many so ready to share their experiences with end-of-life care, Goodman believes the moment is ripe for a sweeping culture shift on the subject. She likens this moment in end-of-life care to the brink of the women's rights movement, which she chronicled. In the late 1960s and early 1970s, storytelling set the stage for social change, she explains, suggesting that talking about end-of-life care can change the way we view and handle death and dying.
"If we get it right, we'll get something big right," she says. "When we get it wrong, we get something big wrong."
At stake is not just helping people die in the way they want but helping their loved ones through the process as well. "It's not that you reduce someone's mourning," she says. "Death is still a hard loss, but you can reduce their depression and guilt if they feel that they have done what the person they love wanted."
[Read: 7 Ways to Help a Loved One Grieve.]
Plus, you can avoid what she heard a doctor dub "seagull syndrome." This is the all-too-common conflict between siblings when one flies in and "dumps all over the plan" put in place by the child who is on site caring for the parent, she says. "The last thing that you want as a parent is for your kids to have a huge falling out at the end of your life."
When people do have these conversations, they report them being "some of the richest and most intimate conversations they've had," Goodman says. "It's real."