Making Time to Talk About Life’s End

By Chloe Veltman, Stanford Center on Longevity

“It’s always too soon until it’s too late,” says the founder of the Conversation Project.

For decades, the American approach to the end of life has centered on legal and financial checklists and advance directives. But a quiet revolution is taking place around kitchen tables and living rooms. Led by the Conversation Project, the focus is shifting from “What’s the matter with you?” to “What matters to you?”

Founded in 2010 by Pulitzer Prize–winning journalist Ellen Goodman after she felt unprepared for her mother’s final days, the Conversation Project helps people share their wishes for care through the end of life. “I wished I had heard my mother’s voice in my ear telling me what she would have wanted,” Goodman says in her 2013 TEDx Talk. “It’s always too soon until it’s too late.”

The nonprofit works to normalize these discussions before a medical crisis occurs. A 2018 national survey found that while more than 90 percent of 1,000 respondents believed end-of-life planning discussions were important, only 32 percent had participated in them. Meanwhile, 53 percent said they would feel “relieved” if a loved one initiated the conversation.

“We didn’t used to have much of a say in how the end of our lives played out,” says Kate DeBartolo, senior director of the Conversation Project. “As medicine has gotten more advanced, there are a lot more decisions to be made.” Understanding what matters to patients is important to healthcare teams and families alike.

Prioritizing Personal Values

The U.S. medical system generally defaults to doing everything possible to keep someone alive, including CPR, breathing tubes or admission to the ICU. “If someone doesn’t want those things, they should be noted in an advance directive,” DeBartolo says.

The Conversation Project helps families discuss these decisions at home, with personal values at the center.

Molly Galler, a Boston-based public relations professional, used the project’s resources after her father was diagnosed with prostate cancer in 2017. Although she writes professionally, she found guidance helpful in initiating a conversation about his wishes. The nonprofit’s free Starter Guide offers prompts about end-of-life values and priorities, including “What matters to me through the end of my life is …”

The guide helped Galler frame the discussion as an act of love rather than a morbid necessity. “To have your adult child say, ‘Whatever you want, Mom and Dad, I’m going to make it happen,’ brought a different level of closeness and maturity as a family that we hadn’t had before,” she says.

A Critical Planning Deficiency for the Inevitable

For Dr. Mehrdad Ayati, a Stanford geriatrician, the Conversation Project addresses a critical gap in healthcare. Establishing a values-based care plan early can help families avoid making high-stakes decisions during an emergency. “At that point, you don’t hear it very well,” Ayati says.

He notes that these conversations remain uncommon. “We still see a lot of frail, elderly people being shuttled back and forth like a ping-pong ball from facilities to emergency rooms, getting a lot of really unhelpful medical care that has nothing to do with the quality of life,” he says.

DeBartolo says outreach remains challenging. Because end-of-life planning has historically been associated with upper-middle-class white communities, the organization is working to diversify its audience through partnerships, including with the Chinese American Coalition for Compassionate Care, and by translating materials into different languages. A creative commons license allows communities to adapt the resources to their needs.

“The thing that’s been interesting to me is how many folks will say, ‘In my culture, there are taboos around talking about end of life,’” DeBartolo says. “But actually, that’s the universal experience.”

Still, DeBartolo is hopeful as cultural interest grows. She points to organizations such as End Well, the rise of death doulas and the popularity of The Pitt. The medical drama features a night-shift charge nurse, Lena Handzo (played by Lesley Boone), who moonlights as a death doula.

“They are handling these conversations so well,” DeBartolo says of the show, which concluded its second season in April. “I am in favor of anything that helps people understand better what their own values are and how to talk about them.”