Deciding the way we want to die starts a conversation
About 125 people recently came out on a rainy night to talk about the importance of discussing your end-of-life wishes with family members of friends. The gathering on May 3 at the Nauset Regional Middle School in Orleans was part of The Conversation Project, a national movement to promote end-of-life discussions.
“We want to have these conversations with our loved ones and doctors, but there is a conversation gap,” said Harriet Warshaw, executive director of The Conversation Project [pdf]. “If we don’t tell people it’s so easy to get caught up in the health system vortex of more medical care, more medical care, more medical care. If you call 911, they are required to resuscitate you and bring you into the emergency room. That’s why it really is important to share your wishes with people.”
The evening was jointly sponsored by the Orleans Council on Aging and Snow Library, which recently concluded a month long community wide read program of Being Mortal: Medicine and What Matters in the End, by Atul Gawande.
Warshaw told the group it was more important to talk about your loved ones’ wishes at the end of their life in a loving, calm state sitting around the kitchen table rather than in an intensive care unit at a time when it’s really hard to make decisions.
Founded by Ellen Goodman
The Conversation Project was founded in 2012 by Ellen Goodman, a Pulitzer prize-winning journalist for The Boston Globe after her own mother’s death. Goodman felt that she didn’t have enough information about what her mother’s wishes were and decided to work so that other families didn’t suffer the way she did.
“The discussion is about our values and what’s important to us at the end of our lives,” Warshaw said. “Our ability to know and to try to at least honor what our loved ones want at the end of their life is such a gift.”
After introducing the origins of The Conversation Project, Warshaw shared some statistics from a nationwide survey the project did. Some of their findings were:
- 70 percent of us want to die at home and yet 70 percent of us die in a hospital or other kind of institution.
- 90 percent of people believe that talking to their loved ones about end-of-life care is important, but only about 30 percent ever do.
- 80 percent of people want to talk to their clinicians about end-of-life care, yet in Massachusetts only 17 percent of us have had this conversation.
- 82 percent of people say it’s important to put their wishes in writing, yet only 23 percent have actually done it.
For Warshaw, It’s Personal
For Warshaw, this topic is not only her job, but hits home personally . Her father had five heart attacks and after the fifth one, he decided he did not want to end his life hooked to machines. He told his family he was ready to die but that he wanted to eat a corned beef sandwich first.
He enjoyed his last corned beef sandwich, whispered his locker combination into Warshaw’s sister’s ear because he wanted her husband to have his golf clubs and then said he was ready. The cardiac fellow who was attending him tried to talk him out of it, but Warshaw requested that her father’s doctor be called.
“Fortuitously he was available and he came right down and he took my father off of all the machines and stood with my mother, my sister and myself as my father passed away,” she said.
Later she shared the story of her mother who suffered from four different cancers over the years. When she learned she had lung cancer, she decided not to go through radiation or chemotherapy again. But the sound of her grandson singing the same prayer over and over again in preparation for his bar mitzvah made her change her mind.
“We went back to her oncologist and she went for another course of chemotherapy and she lived to be at my son’s bar mitzvah,” Warshaw said. “I bring that up because these are many conversations. What matters most to you now is one thing, but five years from now it could be something different.”
The death of her brother from AIDS was far less peaceful, Warshaw said. He wouldn’t talk to family members about what he wanted, and, as one of his primary caregivers it was very painful to not have answers to unresolved questions, she said.
Many People Have Stories
Warshaw opened the discussion up to the audience several times during the two-hour presentation. Audience members were both thoughtful and honest in relating their stories. One woman told of the joyful death of her 91-year-old mother who died at home surrounded by all of her extended family telling her they loved her.
Another woman said she was very grateful she had the conversation with her mother a month before her diverticulitis burst. When the surgeon called to say he wanted to operate, she knew her mother’s wishes and said no. Her mother died very peacefully within 24 hours, exactly as she wanted.
Another member of the audience said she was very sad she didn’t know what her parents would have wanted. Other people talked about being afraid to die alone because family members live so far away. Death with dignity and assisted suicide were both mentioned.
After numerous stories were shared, Warshaw helped the audience members go through the free starter kit that people can download from The Conversation Project website to begin the discussion. Questions in the kit range from how much you want to know about your condition to how long you would like to receive medical care to how involved you want your loved ones to be. Each question has a scale of 1 to 5 to help you rate its importance to you personally.
“There’s no right or wrong answer,” she said. “You bring your own values, your own belief system into responding to this. But these questions help both your family and your clinicians shape an experience for you that is consistent with your values.”
If you missed The Conversation Project, you can view it at the Town of Orleans website by clicking this link.
Providers are also encouraged to get involved in the discussion by collaborating with patients throughout their advanced care planning. Local practitioners are invited to an Advance Care Planning educational event hosted by Cape Cod Healthcare on Thursday, May 19, 2016 from 5:30 – 7:00 p.m. at Hyannis Golf Club.
[Featured Photo: Judi Wilson, Executive Director of Orleans Council on Aging, Harriet Warshaw, Executive Director of The Conversation Project, Mary Beth Fincke, President of the Friends of Orleans Council on Aging and Library Trustee at Snow Library and Tavi Prugno, Library Director at Snow Library]