Death Over Dinner, The Conversation Project Aim To Spark Discussions About The End Of Life
On the evening of Jan. 7, Rosemary Lloyd, a retired Unitarian Universalist minister who lives outside Boston, will host one of the most unusual dinners of her life.
With her husband, son, stepdaughters, and a lifelong friend from high school at the table, Lloyd, who plans to serve an otherwise simple menu of lasagna and salad, will lead a conversation on what may seem the most unlikely of subjects: death.
"Death is very real in our family," said Lloyd. "I remember my first open-casket funeral when I was 5 for my great-grandmother. My grandfather died of colon cancer. The mother of my stepdaughters died of lung cancer, and she is always with us whenever we are together. So to get together very intentionally and talk about what we want out of our lives and deaths, it’s incredibly important."
Lloyd’s gathering, called Death over Dinner, is one of hundreds planned during the first week of the new year across the U.S. and internationally. The purpose is to spark an open-ended conversation about death, from one’s personal experiences and spiritual views about a topic that can be a conversational taboo, to ways friends and families can plan for end-of-life care and advance directives when they or their loved ones die.
"People are not dying the way they choose. Seventy percent of people say they want to die at home, but 70 percent are dying in hospitals and institutions," said Ellen Goodman, a Pulitzer Prize-winning journalist whose year-old organization, The Conversation Project, was founded with the nonprofit Institute for Healthcare Improvement. Goodman has co-sponsored the Death over Dinner effort to get Americans to start the year with resolutions to talk about the end of life.
"We need to have these conversations at the kitchen table, before we are in the ICU," said Goodman, whose interest in encouraging such conversations first came about seven years ago when her mother was dying. "We have to have them before there is a diagnosis, we have to have them early because it’s always too late or too soon." During her mother’s illness, she realized her family never discussed her mother’s wishes and could barely communicate at that point about what her mother wanted for lunch.
The situation wasn’t atypical. According to a Pew Research Center survey released in November, more than one-fourth of American adults have given no thought or little thought to how they want doctors to handle medical treatment at the end of their lives. That includes people 75 or older, among whom one-fourth gave the same response.
At the same time, death is a large part of people’s experiences. About half of adults told Pew they have had a friend or relative who has had a terminal illness or has been in a coma within the last five years. A survey the Conversation Project conducted found that 90 percent of Americans said it was important to talk about their own and their loved ones end-of-life wishes, but only 30 percent actually had.
That’s the space where Goodman believes her organization can help. Its website, which offers a “starter kit" to help people kick off the conversation, has been downloaded more than 62,000 times. It includes suggestions for ice-breakers, such as words a parent or an adult speaking to his or her parents can say (“Even though I’m okay now, I’m worried and want to be prepared.”). It also includes information on how to talk to doctors about the end of life.
Lloyd, who until the summer was an associate minister at First Church in Boston, is one of those who have used the kit, both in her church and among her friends. Now, she hopes to spread conversations about dying more informally through her first Death over Dinner.
It’s not the first time the dinners have happened. They first took place over the summer, when Michael Hebb, a Seattle-based artist, activist and former restaurateur, launched an international campaign to encourage Death over Dinner events. His own interest spurred from a chance conversation he had with a pair of doctors about death while on a train a few years ago. Last year, he turned that conversation into a class he co-taught at the University of Washington’s Department of Communication in which students conceived the first Death over Dinner.
"It just grew from there," Hebb said. "How we die in this country is tragic. We don’t know what our loved ones want, and if we don’t know how can we support them and make the right decisions? We assume that Americans are afraid of this conversation, but I believe that it’s a cultural myth. I think the only thing that is necessary is the proper invitation, permission and guidance to get them started."
To date, about 4,000 people have registered on the Death over Dinner website, where users answer questions about dinner guests, their reasons for hosting and get an email with a sample invitation and potential questions to start the meal (“What can the death of someone close to you teach you about really living fully? For what do you want to be remembered?). Hosts are also asked to pick from a selection of articles, video and audio clips to share with their guests as a sort of pre-dinner homework.
At the “death over brunch” she is hosting on Jan. 4 in Annapolis, Md., Janice Schuster has asked her guests to read an article about the top regrets of the dying, watch Steve Jobs’ Stanford University commencement speech about “how to live before you die,” and listen to an NPR segment about the challenges doctors face in talking to patients about dying.
"Over the summer, my brother-in-law died unexpectedly after being on life support after having an aneurism," said Schuster, a writer for Altarum, a nonprofit healthcare research and consulting organization. "People would just keep on thinking he would rally and come to life. When you have something staring you in the face, it’s sometimes so hard to come to realize your own mortality. All my dinner guests have have suffered some sort of loss in one way or another."
Over pastries and finger foods, they’ll start the meal with toasts to dead friends, family members and ancestors. They’ll share memories of loved ones, and lessons learned — good and bad — from how they lived their lives. And how they died.