It’s Thanksgiving Day and you’re stuffed with turkey and a sense of well-being. Surreptitiously loosening your belt while sipping your pumpkin spice coffee, you nod in a tryptophan stupor when dad says he’s got something on his mind.
“I’m not sure how to put this, guys, but I’ve been thinking a lot about death recently,” he begins. He raises his hand to halt your concerned murmurs. “No, everything’s fine. I feel great. Don’t worry. But because I feel great, I want to talk about what I’d like to happen when I reach the home stretch.”
It’s an inevitable, inescapable finish line, but no one likes to talk about their own death. The Conversation Project, a grassroots nonprofit, is attempting to change that culture of denial and open up the topic for discussion.
To help make sure wishes for end-of-life care are expressed and respected, on November 11-20 the project is again partnering with American clergy who will preach on the subject from the pulpit. Over 50 religious leaders of a spectrum of faiths are participating in this second annual worship drive, which the organization is labeling a Conversation Sabbath.
And the need is palpable. According to a Conversation Project survey, 90% of respondents claim that talking with friends and family about end-of-life care is important to them. However, only 27% have actually held that conversation.
After seeing her own mother’s end of life experience, in 2012 Pulitzer Prize-winning journalist Ellen Goodman cofounded the project, launched in collaboration with the Institute for Healthcare Improvement (IHI), to facilitate these discussions in a high-tech medical era of ramped-up decision making and tricky ethical questions.
“I was quite stunned to find out how many decisions would fall to me. I couldn’t decide what she wanted for lunch, let alone health care. I was sort of shocked we hadn’t talked about this — we’d talked about everything,” Goodman told The Times of Israel this week.
With the “mixed blessing” of medical advancements, these conversations are increasingly important, said Goodman.
“Often the medical community is so intent — in many ways wonderfully so — so intent on prolonging life, on what they can do next, that there’s almost this obligation to extend life at any cost,” said Goodman.
“But guess what, the death rate is 100%,” Goodman laughed. “They [the doctors] need to think about how they can listen to the family and those making decisions for them.”
‘Guess what, the death rate is 100%’
According to a 2012 survey of Californians by the California HealthCare Foundation, 80% of people say they would want to speak to their doctor about end-of-life care, but only 7% report having had this conversation. Through its online starter kit and other resources, the Conversation Project attempts to break cultural taboos and facilitate these tough talks, with doctors, families, and even clergy.
For the second year running, the project is enlisting the help of clergy to raise awareness of the need for frank discussions during this second annual Conversation Sabbath. Ministers, priests and rabbis are again being asked to address their flocks in a sermon and implore them to take the next step and talk.
“We’re trying to bring the Conversation Project to people where they live, work and pray,” said Goodman. “Faith leaders are called upon in spiritual crises, but very few have any training in how to talk with people about what matters at the end of life, to talk with families in distress,” she said.
Rabbi Elana Zelony is the spiritual leader of the Conservative Congregation Beth Torah in Richardson, Texas. Zelony participated last year, in which she said thoughtful seeds were sown. Again this year she will preach on the importance of opening up these critical discussions.
“I think people are afraid of the unknown and illness is the unknown,” said Zelony. “In the decision about how to handle the end of life, there’s a lot of room for tensions and disagreement. For families, where the challenge happens is where they [patients] haven’t been able to express their desires and loved ones are left to guessing.”
Zelony said that while the topic is eminently worthy, “no one likes to think about death.” Having this Conversation Sabbath event makes it easy, she said, to explore the subject under the initiative of this rubric.
To get a sense of your readiness to broach the topic and helpful pointers on starting the discussion with others, you can download a PDF of the Conversation Starter Kit and answer its brief questionnaire. Zelony, for example, intends to have printed hard copies available for her congregation after her sermon.
According to the Conversation Project, the kit has been downloaded more than 300,000 times. It is currently available in English, Spanish, French, Hebrew, Korean, Russian, Vietnamese and Mandarin.
‘What matters to me at the end of life is…’
The kit gives helpful prompts such as, “Now finish this sentence: What matters to me at the end of life is…” and conversation starters like, “I just answered some questions about how I want the end of my life to be. I want you to see my answers. And I’m wondering what your answers would be.”
The kit also instructs people to appoint a health care proxy, also known as a durable power of attorney for health care. It is a legal document in which a proxy or agent is appointed to make health care decisions in case of incapacitation.
This is hardly hypothetical. According to Goodman, over 50% of those hospitalized over age 65 are unable to make decisions for themselves when they enter the hospital.
“That’s a huge number. People don’t want to look that in the face,” said Goodman.
Choose someone who knows your wishes well — a person you trust to speak for you if you’re not able to speak for yourself, reads the kit. The kit also directs people to complete a Living Will or Advance Directive, in which you clearly state which treatments you do — or do not — want to prolong your life.
Often in times of medical distress, family members are at odds over the best care route. A conversation ahead of any crisis “may reveal that you and your loved ones disagree,” according to the kit. “That’s okay. It’s important to simply know this, and to continue talking about it now.”
While the kit can offer a brief jumpstart to organizing thoughts, “some people find it easier to think about their own end-of-life problems on their own terms, by themselves,” said Susan Gubar, author of Reading and Writing Cancer: How Words Heal.
The Indiana University Jewish Studies professor emeritus is also the writer of the popular New York Times column “Living With Cancer,” which she began in 2012 as a way of dealing with her own cancer diagnosis.
“Cancer patients have used journals, diaries, letters, memoirs, and all sorts of forms to express their needs and desires about end-of-life decision-making. Some find it easier to communicate with their families, after they have figured out their own wishes,” said Gubar.
“Given American aggressive medicine, the default position is to do what’s necessary to keep one alive. You can be subjected to an incredible array of technology that are very disturbing,” she said.
Gubar said these preemptive discussions are “terrifically important. I know I have seen people where medical exertions have prolonged life, but not the quality of life,” she said.
After her cancer diagnosis, Gubar said that she was able to confront her mortality.
“In my experience my children are very glad to know what I want for the end of my life,” said Gubar. “Even if it means shortening it.”