COLUMN-Help with end-of-life talks, from a prize-winning writer
By Mark Miller
CHICAGO, March 21 (Reuters) - Ellen Goodman spent decades talking with Americans through her Pulitzer Prize-winning newspaper column about social change and the women's movement. But when her mother became severely ill several years ago, it struck her there was one profoundly important conversation the two of them had never had.
"My mother was the kind of person who would talk about your problems until you were bored with them," says Goodman.
"We talked about everything, except what she wanted at the end of her life. 'If I'm ever like that, pull the plug,' she would say. But at the end there was no plug to pull. She couldn't decide what she wanted for lunch, let alone medical care."
Goodman found herself faced with a cascading series of decisions for which she was unprepared.
"Should she have another bone marrow biopsy? A spinal tap? Pain treatment? I was blindsided, and I began to talk with others - and I found out I wasn't the only one," Goodman says.
The experience left her with the feeling that her mother's death could have been much easier - for her mom and herself - if only they had had what Goodman calls "the conversation." She retired her syndicated column and launched The Conversation Project, a non-profit dedicated to helping Americans have the difficult talks they need to have about their end-of-life wishes.
The project launched online last summer with a "starter tool kit" for families - a free, downloadable interactive guide designed to help people explore their own thoughts and emotions about end-of-life issues, and to promote conversation with loved ones. A second kit has just been added for physicians.
The project started on a small scale, with foundation funding. It receives donated office space and guidance from the Institute for Healthcare Improvement, which was founded by Dr. Donald Berwick, one of the nation's leading thinkers on healthcare innovation and reform.
READY FOR SHIFT
Goodman thinks Americans are ready for a major shift in the way we think about how life ends.
"Death now comes inevitably with a series of choices we can't avoid," says Goodman. "We've just been very slow in seeing how many of the people we love are not dying as they would choose."
Research bears that out. The Centers for Disease Control reported in 2005 that 70 percent of Americans died in a hospital or long-term care facility, yet public opinion polls show an equal percentage would prefer to die at home.
Cultural change will begin when people start to open up on the subject, Goodman believes.
"We need to get people to the kitchen table early with their loved ones to talk about this - not when they're facing a medical-care crisis or in hospital. That's a terrible time to learn."
The conversation starter kit suggests a set of ready-set-go steps to prepare for discussions with your loved ones, including:
* Make a list of people you want to talk with - parents, children, spouses, spiritual leaders, physicians and friends.
* Practice the conversation by writing a letter to yourself or a loved one - just to help gather your thoughts.
* Pick a place, and decide on an ice-breaker for the conversation. The kit suggests a few, along with a list of specific issues to discuss: Who do you want involved in your care? Are there specific circumstances you'd consider "worse than death"? What types of aggressive treatments would you want - or not want? When would it be okay to shift from trying to cure a disease to just keeping you comfortable?
* Recognize that the actual conversations could reveal areas of disagreement or agreement among family members. "That's okay," the kit states. "It's important to simply know this, and to continue talking about it now -- not during a medical crisis."
* Think through the specifics of the care you want at the end of life. Do you want to know everything about your health care in detail, or just the general situation? Do you want everything possible done to prolong life, or focus on quality of life?
* Consider how involved you want loved ones to be in decisions about your care.
Goodman closed our interview with a question that she poses to everyone: "Have you had the conversation?"
If your answer is no, consider downloading the Conversation Starter Kit at Theconversationproject.org, Goodman's website. (Editing by Leslie Adler)