The Conversation Project

TEDMED: Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares five practices for planning for a good end of life.

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MyTownMatters: Have You Had the Conversation Yet? It’s not easy to talk about…but it’s one of the most important conversations you can have with your loved ones. The Conversation Project was founded by Boston Globe columnist Ellen Goodman and others to help families and loved ones talk openly about end-of-life issues, with the goal of having every person’s end-of-life wishes expressed and respected.

Fuller Village, in partnership with Old Colony Hospice and Partners HealthCare at Home, invites the Milton community to join The Conversation Project on Wednesday, June 5th in the Function Room at 1372 Brush Hill Rd at 7:00pm. The program will be presented by Martha Hayward, Lead for Public and Patient Engagement at the Institute for Healthcare Improvement. For further information contact Lisa Ramsay at lramsay@fullervillage.org or 617-361-2116 or visit our website: www.fullervillage.org.

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Boston.com: Pulitzer-winning former Boston Globe columnist Ellen Goodman was at the Schwartz Center for Compassionate Healthcare’s 11th annual “Celebration of Women in Healthcare” event the other night to talk about “The Conversation Project,” her movement that encourages families to talk about end-of-life wishes before it’s too late. About 400 people were in the audience fort the talk, including Schwartz Center Executive Director Julie Rosen and Mimi Bartholomay, a Schwartz Center board member who’s also an oncology nurse at Mass General.

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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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American Journal of Nursing: In 1997 the Committee on Care at the End of Life at the Institute of Medicine (IOM) issued a report, Approaching Death: Improving Care at the End of Life. Everyone is entitled to a “decent or good death,” the committee wrote, one without avoidable suffering, a death that’s in line with patients’ and families’ values and “reasonably consistent with clinical, cultural, and ethical standards.” Now, 16 years later, a new IOM committee with a new name has been convened. The Committee on Transforming End-of-Life Care held its first meeting in February; it will take input from professionals and the public and issue a new report within 18 months.

To read the full article click here.

The Medicare News Group: After Nadine Epstein’s mother passed away, a process fraught with family disagreements about her mother’s end-of-life care and burial, Epstein stumbled upon The Conversation Project, a not-for-profit organization dedicated to helping people express their wishes regarding death.

“With my mother, we all muddled through it rather painfully,” Epstein said. “It was very unclear what (my mother’s) wishes were. I happened to run across The Conversation Project right after this, and realized it would be incredible to have this conversation with my dad.”

The Conversation Project, based in Cambridge, Mass., hopes that its efforts will foster a culture that encourages and accepts as the norm family conversations about death and dying. While 70 percent of people say that they want to die at home, that same number actually ends up dying in hospitals, nursing homes or long-term care facilities, in part because their wishes were not articulated to their family members, according to Ellen Goodman, co-founder and director of The Conversation Project.

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