Pulitzer-prize winning journalist and syndicated columnist Ellen Goodman was always very close to her mother, Edith Holz, but there was one thing the pair never discussed – Edith’s end of life wishes. As Edith progressed through Alzheimer’s and could no longer make even simple daily decisions, Goodman wished she could have her mother’s voice guiding her. After her mother’s death, Goodman founded The Conversation Project, a Boston-based nonprofit dedicated to helping people talk about their wishes for end-of-life care.
Next month, The Conversation Project is encouraging broader conversation about end of life wishes through a community engagement effort called “Conversation Sabbath.” The simple goal of the program is to encourage faith-based communities to begin to talk about a subject that may be difficult from November 6-15.
“Ninety percent of people think they should have the conversation, but only 27% have actually done it,” explained Reverend Rosemary Lloyd, a Unitarian Universalist minister who serves as an advisor to faith-based communities for The Conversation Project. “People don’t want to be a burden. But if people don’t talk about what their wishes are, they are in fact doing that – burdening others with the unknown, grief and doubt if they don’t know what the person wanted. How do we make that change? How do we narrow that gap? We think having ‘The Conversation’ (or having conversations) can make the difference.”
Houses of worship, where people have the support of The community, were a natural fit for The Conversation Project. “Everyone has a story, and sharing your story brings you closer,” said Rev. Lloyd. “Congregations are storytelling communities; every week a rabbi or a minister tells a story from sacred text. We can learn from each other – what worked, what didn’t.”
More than 30 area congregations of all faiths, about 1/3 of which are synagogues, have signed on to this first Conversation Sabbath, and interest has been generated in far-flung states as well. The Conversation Project will provide a Starter Kit (free on their website) and other aids such as icebreakers and sermon ideas to help families begin the conversation. Using gentle, user-friendly language, the Starter Kit is designed to help individuals focus on what is important to them, and to bring doctors into the conversation as well.
There is no agenda for each community’s conversation, and sermons, guest speakers, dinners or book discussions are options. Temple Isaiah in Lexington and Temple Israel in Boston, both early adopters of The Conversation Project, have done a series of events involving various elements such as estate attorneys and doctors, while other congregations have done more spiritual things, such as having congregants write their own obituaries.
“The conversations generated are remarkable,” said Rev. Lloyd. “I give them one question, and I can’t get people to stop … the whole investigation is a very deep spiritual practice in my view. It requires self-knowledge and sustained self-reflection to look at your own dying directly. What do I want to do with this life that I have? Ultimately, it is about your life and living.”
End of life care has been a longtime interest for Reverend Lloyd, who said she watched her four grandparents age and ultimately die at home. Later, in her work as a chaplain at Dana Farber and Brigham and Women’s Hospitals, she saw less desirable outcomes, often with family members disagreeing about end of life care for their loved ones. “I thought this shouldn’t have to be this way. I always thought I should be reaching people sooner,” she said.
“Most think it is always too early until it is too late,” said Rev. Lloyd, adding that nearly 60% of people haven’t written their wishes down, and only 7% have spoken to their doctors. In January, Medicare will begin paying doctors to have conversations about end of life care. Preparing to have a conversation with your doctor is also important.
“You don’t want the first time you think about your wishes to be in your doctor’s office,” said Rev. Lloyd. There is a separate starter kit for talking to your doctor.
According to Rev. Lloyd, clergy can be a support and can encourage people through religious values to be able to bring up the subject of dying without fear. “We can plant the seed to encourage more conversations, and normalize those conversations so that people’s wishes will be respected… It is a legacy to all of our loved ones.”
Synagogues considering participating in Conversation Sabbath should contact Rev. Lloyd at firstname.lastname@example.org. For more information and to register for Conversation Sabbath, visit theconversationproject.org.