Time To Talk
Kate DeBartolo, Director of The Conversation Project
By Morgan Baker
Talking about death doesn’t have to be depressing, says Kate DeBartolo, Director of The Conversation Project. It can be a loving, funny, respectful sweet conversation, if you know what you’re doing. And, don’t wait until you’re 80 or 90. Start talking when you’re 18, and keep it going.
The conversation is actually many conversations you should repeat every decade and at different life stages and life events – before you go off to college, when you get married, have a child, go on a trip, or downsize your house.
Don’t wait until you’re 80 or 90. Start talking when you’re 18, and keep it going.
DeBartolo’s father at 67 went on a month-long motorcycle ride across the country. Before he left, he changed his health directive. If in the unlikely event, he was to get in an accident, he told his family they could put him on life support for 72 hours until they could get to him to say good-bye, which was not in his original plan.
According to The Conversation Project, 90 percent of people want to have these conversations; 30 percent are actually doing the talking. The good news is the number is rising. Five years ago, 27 percent of people were talking; today 32 percent of people are having the conversation. “That’s a 5 percent increase. That’s a major movement,” says DeBartolo. Having the conversation, she says, can often seem like it’s “too soon until it’s too late.”
The Conversation Project, started by Ellen Goodman and Len Fishman in 2010, after their own experiences with their parents’ deaths, encourages people to talk about end of life wishes with your loved ones now, regardless of your age. The conversation should be a current one, and should begin when you’re 18, not when you’re elderly in the hospital hooked up to machines.
Historically, people have shied away from these conversations for cultural reasons, for fear of insulting the person to whom they are addressing, because they feel the need to protect their loved one or they think it’s a medical conversation a doctor should facilitate.
Talking about the end of life, says DeBartolo is talking about values, not about medical intervention. Think about what you want your life to look like now, regardless of your age, should a tragic accident befall you, you come down with Cancer or fall prey to dementia.
If you think loved ones may not want to hear about your wishes, because it’s too hard for them to think of you not being here anymore, ask about them about theirs instead, suggests DeBartolo.
Seventy percent of people says they want to die at home, but 70 percent are dying in hospitals.
The culture is shifting, she says. “Boomers saw how their parents aged and died, and they don’t want to do it that way. There are choices to make,” she says.
Just as the Boomer generation changed how we birthed our children, it is changing how we die as well. Seventy percent of people says they want to die at home, but 70 percent are dying in hospitals.
Having these conversations doesn’t just help the dying, says DeBartolo, but it helps the survivors as well.
DeBartolo says, “What is behind the statement? Often it is being misconstrued.” We need to listen to what these people really want. Is it that they want to be at home, or do they want their cat with them, home cooked meals, their favorite comforter, or some of their furniture?
Having these conversations doesn’t just help the dying, says DeBartolo, but it helps the survivors as well. “Depression rates are lower six months after a death if there was a conversation,” she says. Grief isn’t as complex, and survivors feel less guilt about how their loved ones were taken care of.
Perhaps a loved one needs to be put on a ventilator and you don’t know if he’ll come off it, DeBartolo suggests talking to one another while you still can before the loved one is intubated, so the survivor knows he had his chance. This idea originated with Dr. Michael E. Wilson who discovered that by doing this, he might not have saved a life, he said, but he saved a death.
It’s important, however, to recognize that the original conversations can take place between children and parents, spouses, grandchildren and grandparents, good friends or with a faith leader. Find the decision maker you can talk to. But, she recommends, tell more than one person, so there is no room for disagreement when the time comes to make a life or death decision. Think about who you want to be your health proxy – it doesn’t have to be your spouse or oldest child. Find someone who can make decisions and has some agency about them.
You can find the starter kit on The Conversation Project’s website which prompts you to ask yourself questions about what matters most to you, such as do you want to recognize your kids, do you want excellent nursing care in a hospital, do you want to be able to say good-bye? What kind of role do you want in the decision making; what role do you want your loved ones to have?
The starter kit also suggests places to have the conversation, such as the kitchen or car; when to have it – before you have a baby, at the next family gathering, before a trip; and the starter kit offers up a few ice breakers to get the conversation started. You can say you read this article, for example. And, you can even practice your ice breaker in a mirror, suggests DeBartolo, or begin by writing a letter.
Hundreds of thousands of people have downloaded materials from The Conversation Project’s website to help them with end of life decision making.
The Conversation Project not only encourages family members and friends to talk to one another, but it will also go into different communities to facilitate conversations among groups of people. “We take it to where people live, work and pray,” says DeBartolo, whether that means a geographic community, congregation, library, or chamber of commerce. They’ll work with local leaders, including health professionals, retired attorneys, and employers to facilitate these meetings.
It may take a while for everyone to get onboard as it can take people hearing about a new concept eight times and eight ways before it sinks in, but that’s why The Conversation Project is out there, making sure that people have these conversations early and often.
About the Writer
Morgan Baker is the managing editor of The Bucket. After a year in Hawaii, she is back in Cambridge, where her new adventure is adding a puppy to her family. She teaches writing at Emerson College. Her work can be found in The Boston Globe, The Boston Globe Magazine and The Brevity Blog, among other publications. She can be reached at firstname.lastname@example.org.
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