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An Advocacy Group’s Head Seeks to Start Life-and-Death Conversations

Posted on 05/21/2013

The Chronicle of Philanthropy: Harriet Stern Warshaw knows personally how hard it is to get people to talk about death and what kind of care they want at the end of their lives. Her brother, who died of AIDS, wouldn’t delve into the topic with her at all.

But her parents were far more open about their own desires, making it easier for Ms. Warshaw to deal with their deaths. Now she is trying to promote that same kind of discussion as head of The Conversation Project, a new nonprofit.

The group was founded last year by Ellen Goodman, a Pulitzer Prize-winning journalist, and Len Fishman, a former chief executive of Hebrew SeniorLife, with money and other help from the Institute for Healthcare Improvement to provide people with the tools they need to make end-of-life discussions common and easier. The Conversation Project shares offices with the institute and gets assistance from its health-care experts.

Sparking Dialogue

With a budget of about $1-million, the group provides free online tips on how to begin a conversation with family members, doctors and other health-care providers. It also posts stories on its Web site from people who have had end-of-life discussions with those close to them. The nonprofit also holds workshops with community foundations, hospitals, faith-based groups and others to help them encourage end-of-life discussions.

The group has received additional grants from the Cummings Foundation, the Cambia Health Foundation, and others, and is seeking more support.

Ms. Goodman helped start the foundation five years after her own mother died, a difficult time when she realized that she and her mother had always talked about everything in life except what happens at its end.

As a result, Ms. Goodman says, it was up to her to make the flood of decisions concerning her mother’s care, with little idea of what her mother actually wanted.

Ms. Warshaw’s background working in the health-care industry (including positions at New England Baptist Hospital and the New England Healthcare Institute) and as an elected official for the town of Wellesley, Mass., gives her the leadership experience and health-care expertise the project needed, Ms. Goodman says.

“We know Harriet’s the person who can keep the puppies in the basket, and keep us lined up and moving in the right direction,” says Ms. Goodman.

Ms. Warshaw is also a valuable addition, says Ms. Goodman, because of her experiences in the 1970s at what is today Brigham and Women’s Hospital, where she saw from the inside how a grass-roots approach can bring about major change. It was in those days that she saw women patients push for better conditions in maternity wards that would promote better health and family involvement in the process so women wouldn’t feel alone in the delivery room.

“It wasn’t because of anything we did in the hospital,” says Ms. Warshaw. “It was women saying they wanted a different birth experience. I saw how the hospital doctors had to get over their own anxiety, and how we had to listen. And we did.”

Ms. Goodman says the conversation about improving maternity ward conditions is similar to the one involving death. Despite the sensitivity of the subject, Americans want a better way to help their loved ones and honor their values, she says, whether that entails taking every measure of modern medicine to sustain life or making dying at home in comfort a priority.

Says Ms. Goodman: “If a previous generation changed how we are born in America, this generation can change the way we die, and have it be much more humane and much more in line with the way people will choose.”

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