Pulitzer Prize winning journalist Ellen Goodman, best known for her column in the Boston Globe, would love to see the Goodyear Blimp fly over Fenway Park and Akron’s own Canal Park flashing an intriguing message, “Have you had the conversation?”
On April 8, Goodman, the keynote speaker at the annual Palette of Faith and Respecting Options of Care Conference at Akron Children’s Hospital, spoke about the conversation family members should have with loved ones about end-of-life care preferences well before they are in a medical crisis and unable to speak for themselves.
Before a full audience of medical care providers and representatives from Akron’s faith community, Goodman said her non-profit organization, The Conversation Project, did a survey that showed 90 percent of Americans believe it is important to have end-of-life care conversations with loved ones, yet only 30 percent have had one.
“90 percent is significant,” said Goodman, “90 percent of Americans don’t agree on anything. But we clearly have to close the gap [between the 90 and 30 percent.]”
After the death of her mother, Goodman began thinking a lot about death. She began talking to others about their experiences and kept hearing the words, “good death” and “bad death” or “hard death.”
Popular culture cements its ideas of “good death,” such as a loving couple dying together or an elderly person who doesn’t awake from sleep after a long and wonderful life.
No pain. No hospital. No months and years of worry, mounting medical bills, and anything less than an active, fulfilling lifestyle.
Goodman said her mother talked about everything except how she wanted to live at the end of her life.
“In my mom’s last years of life, she was no longer able to decide what she wanted for lunch, let alone what she wanted for medical care. So the decisions fell to me,” she said. “Another bone marrow biopsy? A spinal tap? Pain treatment? Antibiotics? I was faced with cascading decisions for which I was wholly unprepared.”
The Conversation Project began when Goodman and a group of doctors, clergy, social workers and journalists decided there must be an easier way.
They set out to begin a public engagement campaign with the goal that everyone’s wishes for end-of-life care are expressed and respected.
Goodman believes that, over time, The Conversation Project could have the same impact on society as the women’s, civil rights or gay rights movements – as all efforts of social change start with people sharing their personal stories and what matters to them.
Increasing the number of people taking part in what Goodman calls “estate planning of the heart” would have ripple effects, such as reducing healthcare costs, as well as the burden of caregivers who often have to leave jobs to care for their parents.
The project’s website includes a “Conversation Starter Kit,” a guide to making advance directives and other resources.
This ABC News story features one family’s approach to the conversation, as well as an interview with Goodman.