In our annual HealthLeaders 20, we profile individuals who are changing healthcare for the better. Some are longtime industry fixtures; others would clearly be considered outsiders. Some are revered; others would not win many popularity contests. They are making a difference in healthcare. This is the story of Ellen Goodman.
This profile was published in the December, 2014 issue of HealthLeaders magazine.
"We know people are not dying the way they would choose: 70% want to die at home; 70% die in a hospital or other institution."
As one of the most accomplished U.S. newspaper columnists of the past half century, Ellen Goodman dedicated her journalism career to bearing witness to life. Now the Pulitzer Prize winner is dedicated to helping her fellow citizens bear the burden of death.
In 2012, Goodman and the Massachusetts-based Institute for Healthcare Improvement launched The Conversation Project, a public engagement campaign designed to transform the way Americans die. The goal of the effort is for everyone to have his or her wishes for end-of-life care expressed and respected. "Let's have this conversation at the kitchen table before this is a crisis," Goodman says. "A crisis is a terrible time to learn."
She says The Conversation Project's approach to changing Americans' attitudes about death mirrors the advances made in attitudes about birth. "It's not strictly a medical experience. Birth is a human experience," Goodman says, noting the development of birthing rooms and the ability "to bring your husband" a generation ago. "We believe dying is also a human experience."
Goodman, who began writing op-ed columns for The Boston Globe in 1974, says there is no singular approach to discussing a loved one's final wishes, but she adds that there is a singular imperative to have "the conversation" before a serious illness or death. "We know people are not dying the way they would choose: 70% want to die at home; 70% die in a hospital or other institution."
The master storyteller offers some advice to deal with the adversity. "You can start a story many different ways. For kids and older adults, say you need their help. People begin some of the best conversations of their lives. Adult children want to have these questions answered. They want to do the right thing."
The 73-year-old says she learned the hard way about the risks of not knowing a loved one's final wishes when her mother died.
"You have to have this conversation. You have to choose your decision-maker and talk to that person. It's important not to have just a piece of paper. I was making decisions without knowing what she would have wanted in several instances," Goodman says, noting that her mom suffered from dementia and recurring pneumonia at the end of her life. "Twice I said yes to antibiotics, and I wasn't sure. I had no guidance. I had no idea when this all began that I would be asked these questions. … Most families don't realize they are going to be asked 'medical' questions."
Goodman acknowledges talking about death is difficult in nearly every culture. "Everybody thinks it's harder in whatever their culture is. It's just hard. It's loss. It's death. It's just really a hard conversation. It's easy to pass it over." But she stresses the price that's paid when death comes to those who are wholly unprepared. "Their survivors are more likely to be depressed and uncertain. You leave a hard legacy behind you."
Christopher Cheney is the CMO editor at HealthLeaders.