When the conversation turns to death
When Orleans residents joined a community read of Atul Gawande’s latest book on end-of-life decisions, Being Mortal: Medicine and What Matters in the End, it started a discussion about a sensitive topic that will continue on Tuesday, May 3, at Nauset Regional Middle School.
Decisions about end-of-life care are as different as personalities. What matters most to one person might barely register as a worry to another – which is why it is so important to make sure your wishes are known.
The topic will take center stage from 6 to 8 p.m. Tuesday at the school on Route 28 in Orleans. Harriet Warshaw, executive director of The Conversation Project [pdf] will lead the discussion about the importance of discussing your end-of-life wishes with family members.
Warshaw’s presentation is at the invitation of the Orleans Council on Aging and Snow Library, which sponsored the reading program of Gawande’s book.
Gawande is a surgeon at Brigham and Women’s Hospital in Boston. His book is an emotionally-engaging, fearlessly honest examination of the limitations and failures of his profession in light of advancing medical technology and an aging population they are now able to keep alive even if that life is not at all what their patients want.
The Conversation Project began out of one daughter’s anguish that she didn’t know what type of care her mother would have wanted. That daughter was Ellen Goodman, a Pulitzer prize-winning journalist for The Boston Globe.
“She and her mom were very close, but the only conversation that they never had was how her mother wanted to live at the end of her life and what kind of care she would want,” explained Warshaw.
“When her mom was unable to speak for herself, Goodman was put into the position as a caregiver and she was blindsided. She really wished that she had had her mother’s voice in her ear so that she could honor her mother’s wishes.”
Goodman isn’t alone. Ninety percent of people think these conversations are important, but only about 30 percent of people ever have them, Warshaw said.
Goodman shared her concern about his subject with Len Fishman who was the head of Hebrew SeniorLife, a non-profit, non-sectarian research and education organization based in Roslindale, Mass., at the time. They decided to gather about 20 friends for a dinner party to discuss the issue, and asked everyone at the table to share an example of a good death or a hard death.
“What happened with this sample of friends is that those people who said they had experienced a good death with a loved one were really those who knew what their loved ones’ wishes were so they could at least try to honor them,” Warshaw said. “Those who felt like it was a difficult death were those who were totally clueless.”
Out of that dinner party, a partnership with the Institute for Healthcare Improvement (IHI), a non-profit research center based in Cambridge, began and The Conversation Project was born in 2010, with Goodman as co-founder and director along with Fishman. They hired Warshaw, who has a lifelong background in hospital administration, to be the executive director of the organization.
The idea was to start a grass roots public engagement initiative to change the cultural norm from not talking about this forbidden topic to normalizing the conversation about end-of-life wishes. To that end, they created a free starter kit that people can download from their website to begin the discussion.
Once news of The Conversation Project got out, their phones began to ring. The team is currently working with over 400 communities to create leadership teams made up of health care personnel, senior centers, clergy members and anyone else who is willing to spread the word about The Conversation Project.
One of the most important aspects of The Conversation Project is that it emphasizes there is no one size fits all answer. Instead it respects each person’s individual comfort levels and choices.
The point is for each person to think about what matters most to them, and give them a way to convey those wishes to their loved ones before there is a healthcare crisis that might take the decisions out of their hands.
“It’s really talking about life and how you want to live,” Warshaw said.
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.