Campaign aims to spur end-of-life conversations within families
But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.
Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.
“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”
With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.
Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.
There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.
The effort also has a partnership with ABC News.
A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”
It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.
The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.
“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”
Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.
Goodman’s mother died six years ago.
The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.
“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.
At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.
Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.
“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”
The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.
They signed a form to not have him resuscitated if his heart failed.
“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”
Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.
Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”
Still, she is having a hard time starting that conversation.
“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”
Getting Americans to put their end-of-life wishes in writing has not fared much better.
More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.
But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace , an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.
Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.
“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”Kay Lazar can be reached at email@example.com. Follow her on Twitter @GlobeKayLazar.