If you're going to visit your parents during the holiday season, or your kids are coming to see you, we'd like to suggest a topic of conversation to raise after you've updated each other on your lives: Your end-of-life wishes.
Several years ago, Ellen Goodman, a Pulitzer Prize-winning columnist for the Boston Globe, was forced into the position of decision-maker for her mother. As her mom's health declined, Goodman quickly realized that the two of them had never talked about her end-of-life wishes. "After all the years I had written about these issues," she now says, "I was still blindsided by the inevitable."
After her mother's death, Goodman began sharing her experience with friends and colleagues and quickly discovered that "everybody had a story," she says. "As a journalist, when you start talking about something and everybody has a story, that's when you know there's something in the air.
"And when we start sharing stories, that's a real impetus to social change. That's the way the women's movement started, with women hearing stories and saying, 'I thought I was the only one.'"
In 2010, Goodman launched the Conversation Project, in conjunction with experts from the fields of medicine, the media, and long-term care. Their goal: encourage people across the country to talk about their wishes for end-of-life care and provide them with tools to make the conversation easier. "The country is at a tipping point," when it comes to addressing issues we once scrupulously avoided discussing, Goodman says. "We're helping that happen."
The project's website launched last summer, with a downloadable starter kit that walks you through many of the questions that will frame a conversation with friends or loved ones, from how much they want to know about their condition as they decline to how aggressively they want doctors to treat them or how much latitude they wish to give to loved ones making care decisions on their behalf.
More than 40 percent of visitors to the site have downloaded the starter kit, an indication, Goodman believes, of a "pent-up desire for help" with end-of-life planning around the country. (The project's site also offers information about locating and completing other crucial documents, like living wills and health care proxies, and will soon post a guide to starting a conversation about end-of-life care with your doctor.)
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The holiday season is a natural time to conduct these conversations, as families gather, perhaps with children or siblings. Goodman's team hopes to spur those talks with its "Gift of Conversation" campaign, which enables visitors to send friends or family members a link to download the starter kit, with a personalized message. "This conversation is a gift to your family," Goodman says. "We want you to start this conversation with the people you love, either because you may have to make decisions for them or because they may have to make decisions for you. They should know what your feelings are."
And it's not just a discussion for adult children to have with their aging parents. It's something every adult should talk about with whoever may one day be in a position to speak for them because of chronic illness, dementia or any other life-changing setback. Goodman says that her team's mantra is, "It's too soon until it's too late."
"We all know," she says, "we should be having these conversations without waiting for some mysterious time that may well be too late."
The Conversation Project is not an advocacy group and does not campaign for people to support any one approach to end-of-life care. "You're going to have a lot of conversations and some will be pretty detailed," Goodman says, adding that she is daunted by detailed health-care proxy documents, in which one must specify wishes for a range of possible situations.
That's why she believes the initial conversation about general goals is important. "You'll be in a much better place if you know what's important to people," she says, "and you'll have a better perspective from which to pursue those increasingly difficult conversations about medical treatment."
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If you're ready to begin the conversation with someone you'll be seeing this season, share the starter kit in advance. "It's not scary," Goodman says. "Many people have reported to us that these have been some of the most intimate and loving conversations they have had."
It's easy to put these talks off until next Thanksgiving or Christmas, she adds, but that procrastination may come back to haunt you. "The idea should be: Let's start these conversations at the kitchen table, not in the ICU."