BOSTON—Ellen Goodman won the Pulitzer Prize for her thoughtful Boston Globe columns. Now retired from that job but busier than ever, Goodman publicly laments that she won no prizes for easing her mother through illness and very hard decisions about how to care for her during the final months of her life.
"The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death," Goodman writes on the website of The Conversation Project, an effort she co-founded in 2010. "I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It's time for us to talk."
And talk she has, and will, to a growing circle of individuals and organizations. American society today shares many similarities with the death-avoidance culture that existed in 1969 when Elisabeth Kubler-Ross wrote her classic, On Death and Dying. Thinking about death, let alone having family discussions about how we'd like to die, is the exception, not the rule. Sitting down and talking to an adult child about your notion of "a good death" is a near-guaranteed way to clear the room.
Yet survey after survey documents that people recognize the cost of not being prepared to end their lives. They know it inflicts enormous stress on their family caregivers, at the time of death and perhaps for decades after. They also know their own wishes may not get carried out without advance planning, possibly leading to unnecessary pain and suffering they would like to avoid.
Here are four sets of polling data the project presents to illustrate this disconnect:
1. Although 60 percent of people say making sure their family is not burdened by tough decisions is "extremely important," 56 percent have not communicated their end-of-life wishes
2. About 70 percent of people say they prefer to die at home, but 70 percent actually die in a hospital, nursing home, or long-term-care facility.
3. Roughly 80 percent of people say that if seriously ill, they would want to talk to their doctor about end-of-life care, yet only 7 percent report having had an end-of-life conversation with their doctor.
4. Finally, 82 percent of people say it's important to put their wishes in writing, but only 23 percent have actually done it.
The Conversation Project tries to provide people encouragement and tools. Its Conversation Starter Kit, among other resources, aims to help turn the recognition of end-of-life needs into actual conversations and plans. It also includes, echoing Goodman's newspaper days, a growing number of stories told by people who have or haven't had "the conversation" and, for better or worse, how their lives were affected.
"These stories are so close to the surface but hidden," she said in a recent interview over lunch near the project's offices. "These are hard conversations to start, and that is true. But we've found that people are more ready to have these conversations than we thought. But they generally feel, 'I am the only one,' so they've kept their stories under wraps."
Baby boomers, Goodman believes, are the key to changing attitudes toward death. "Our target of opportunity has been the baby boomers," she says. "They have been change agents their whole lives. They are much more likely to change the system. They are much more likely to talk about it."
To take advantage of this tendency, explains Harvey Freishtat, a Conservation Project director, the program wants to broaden the types and number of places where conversations can be initiated and supported. Moving conversations into new venues—community, faith-based, and employer sites—is the project's next focus. "In phase two," he says, "we want to go to people where they work, where they pray, and where they live."
Here are questions from the starter kit that you might think about addressing in end-of-life conversations:
1. When you think about the last phase of your life, what's most important to you?
2. How would you like this phase to be?
3. Do you have any particular concerns about your health?
4. About the last phase of your life?
5. Who do you want (or not want) to be involved in your care?
6. Who would you like to make decisions on your behalf if you're not able to? (This person is your health care proxy.)
7. Would you prefer to be actively involved in decisions about your care? Or would you rather have your doctors do what they think is best?
8. Are there any disagreements or family tensions that you're concerned about?
9. Are there circumstances you would consider worse than death? (Long-term need of a breathing machine or feeding tube, or not being able to recognize your loved ones.)
10. Are there important milestones you'd like to meet if possible? (The birth of your grandchild, your 80th birthday.)
11. Where do you want (or not want) to receive care? (Home, nursing facility, hospital.)
12. What kinds of aggressive treatment would you want (or not want)? (Resuscitation if your heart stops, breathing machine, feeding tube.)
13. When would it be okay to shift from a focus on curative care to a focus on comfort care alone?
14. What affairs do you need to get in order, or talk to your loved ones about? (Personal finances, property, relationships.)
As hard as such conversations might be, Goodman stresses, the notion that there is never a good time to talk about death can have very painful consequences.