Leaders in the Patient Experience: Ellen Goodman, The Conversation Project
By Barbara Sadick
Sarah Archer had always looked forward to her grandmother’s freshly baked cakes and cookies and the homemade jams and jellies that were ready for whichever children or grandchildren, most of whom live nearby, might drop in to visit. Those who arrived would be warmly greeted and generously fed. Filled with the pleasing aroma of fresh baked goods, the kitchen was a happy meeting place charged with excitement. Now, for the last five years, when Archer enters that kitchen, Arleen Walski is no longer cooking, but is simply sitting quietly exhausted at the kitchen table.
Seventy-five-year-old Walski of Trempealeau, Wisconsin, has struggled with congestive heart failure and lung disease, both chronic conditions. Most of her free time had been spent traveling to Gundersen Lutheran Medical Center in LaCrosse for appointments with a cardiologist, a pulmonologist, an internist and other specialists. But none of that really helped. Her health continued to decline and she was getting tired. Her granddaughter, Sarah, who works with Bud Hammes, a well-known clinical ethicist at Gundersen Health Systems, knew about the benefits of having conversations about the end of life and death, and the wisdom of making one’s wishes known before one is unable to.
Sarah recalls her grandmother talking about what she did not want to happen at the end of her life, but nobody was clear on what she did want, so Sarah gently asked her if she had ever thought about it. “My grandmother had never expressed any wishes before,” says Sarah, “but once the subject was directly broached, the floodgates opened.” As is often the case, it turned out that Walski was worried about what everyone else wanted and was afraid to talk openly about how she felt.
Resistance to thinking and talking about death is deeply embedded in our culture. “People don’t want to be dead, and loved ones don’t want them to die,” says Ira Byock, MD, Professor and Director of Palliative Care at Dartmouth Hitchcock Medical Center, Author, and Advisor to The Conversation Project. When I mentioned having “the conversation” with my mother, she said she couldn’t think about it. Her new washing machine wasn’t working. My friend Amy said she’d think about it and get back to me. Laura, another friend, said she hasn’t had “the conversation” with her 97-year-old father because she thinks that he thinks he’ll live forever.
Clearly, people avoid talking about how they want to die. Some experts, though, say the problem is not that people do not talk about end of life decisions, but that when they do, they do not know how to do it or what to talk about. “We’re all going to face complex medical decisions at some time in our lives,” says Hammes, “but at least half of those decisions will be made by people other than ourselves – people close to us.” Making sure medical care makes sense from a patient’s perspective, Hammes believes, takes the burden off of those we love. When family members are asked to make decisions and they do not know what is really wanted, they often have to live with the guilt and emotional distress caused by the possibility that the wrong decisions were made.
The Conversation Project, headquartered in Cambridge, Massachusetts, and launched and co-founded by journalist and Pulitzer Prize-winning columnist Ellen Goodman, grew out of Goodman’s experience with her mother’s death. “My mother and I talked about everything,” she says, “but when she was no longer able to make her own decisions, I realized we hadn’t talked about her wishes for the end of her life. I understood only after her death how much easier it would have been if I had heard her voice in my ear as these decisions had to be made.”
Goodman is now deeply aware of the importance of having end of life discussions with loved ones so that the experience of death can be good for all involved. The difference between a good death and a bad death, she learned, is whether a person’s wishes have been expressed and respected, no matter what those wishes are.
Following her mother’s death, Goodman began to talk with others about her experience. She gathered together interested people for a series of small discussion groups about “the conversation” and dying. Clergy, medical professionals, journalists, teachers and others who were interested came not as experts, but as individuals exploring ways in which to break down cultural barriers that discourage open and honest conversation about end of life and death. Each participant had a story to tell, and each meeting attracted more people than the one before. “The big secret,” says Goodman, “is that everyone has a story. And people want to tell the stories they haven’t had a chance to tell.”
The Conversation Project partnered with the Institute for Healthcare Improvement and had its official debut on August 15. Its mission is to conduct a public campaign to raise awareness of the benefit of having “the conversation” with loved ones and to guide individuals in doing that. An online site (www.theconversationproject.org) is designed to help people begin to learn how to talk with their elders, their contemporaries, their children and themselves.
Those working in the field of death and dying say there has been little cultural change in bringing people to the virtual kitchen table for an end of life discussion. “The wish for how to die is such an important one,” remarks Goodman, “but we avoid planning for it deliberately and carefully. People don’t realize that there’s an option not to be hospitalized at life’s end or to plan for death at home.” Sixty percent say it is important for them not to burden their families with tough decisions, but 56 percent say they have not communicated their end of life wishes. And doctors rarely broach the subject with patients. In Massachusetts, only 17 percent have had end of life conversations with their doctors. In California, that number is 7 percent. In LaCrosse, where Arleen Walski is a patient, 96 percent of residents who die have a written end of life care plan in their medical records.
“People are terrified of two things,” says Martha Hayward, who is charged with The Conversation Project’s public and patient engagement. “They’re afraid of too much care and they’re afraid of too little care.” That makes it important for them to have conversations not only with their families, but with their doctors, and the initiative to do so needs to begin with each individual. But first, the objective is to get the American people thinking, talking about and exploring their own values, what matters most to them and how they want to finish their lives. The project’s purpose isn’t simply to get people to fill out living wills, advance directives and other medical forms, although they should eventually do that, but to get them comfortable with talking to each other about end of life wishes.
“Our only agenda,” says Hayward, “is raising concerns about the end of life. It’s all about each individual making his end of life wishes known.” Hayward says people are more comfortable when they are clear on what they want at the end of life. “Some people may want to live no matter what,” continues Hayward, “and that is something they have to let their loved ones know about.”
People should begin by considering how involved they want others to be in their death, with whom they want to have “the conversation,” which should be ongoing, when and where that conversation should take place, and what they want to say. At the end of the initial process, wishes should be written down. “The objective,” say Hammes, “is to get people to describe what they want without having to speak in medical terms, but if someone says she doesn’t want to live ‘like a vegetable,’ then that person must think about what living ‘like a vegetable’ means to her. It requires people to recognize and state their beliefs clearly.”
At Gundersen, doctors are taught and are expected to talk with patients over the age of 55 about how they envision a good experience of death. For the last 25 years, the city has taken a lead in promoting conversation and care planning, and is often cited as a national model. Because of that, Arleen Walski’s granddaughter knew how important it might be for her grandmother to think about and tell her husband and children her wishes for treatment and death.
Once Walski felt she could express her end of life wishes without upsetting her family, she began to think about how she wanted to live out her final days and who would best represent her to ensure that those wishes would be carried out. She wanted her decisions to be made with, and understood and supported by her family. When she had all the private conversations she felt she needed to have, she called her family together, along with a facilitator from Gundersen to help guide the conversation.
“A woman came to my mother’s house,” says Diane Bushman, Walski’s daughter, “to help us all to understand why we were gathering at my mother’s kitchen table. She asked my mother how she wanted to live out the rest of her days and how she wanted to die, and made sure we all expressed our feelings too.” Bushman says there were areas of disagreement, but eventually, with the help of the facilitator, all who’d gathered talked out the uncomfortable issues and Walski’s wishes were finalized and heard by members of her family. “I wrote down everything,” says Walski, “and I’m OK with it. I’ve had a good life; I have six children who all live near me. I’m comfortable and the burden’s been taken off of my husband. They all know what I want and it’s all OK.”
In her quest to better understand how people regard and are helped by having “the conversation,” and to implement The Conversation Project so that it reaches and teaches the greatest number of people, Goodman consulted with Hammes in LaCrosse, and with many others whose work is devoted to end of life issues. “We’ve connected to many articulate, thoughtful, helpful people,” says Goodman. “I think we’re at the tipping point with people ready to have ‘the conversation.’ We’ve also learned that an end of life conversation often turns out to be neither a scary nor grim process, but an intimate, precious, caring, and memorable exchange.”
© 2012, Barbara Sadick and the Association for Patient Experience, All Rights Reserved
This is the fourth article in this series, written by Barbara Sadick, Association member and freelance health writer. Based in New York City, Barbara’s clients include U.S. News & World Report, Healthline.com, The Commonwealth Fund and Health Behavior News Service. In 2003, after the death of her brother from lymphoma, she began working as a freelance health advocate, researcher and writer. Her personal experience has been supplemented with an MA in Health Advocacy from Sarah Lawrence College and an MS in Health and Behavior Studies from Columbia University. Available for freelance writing and research, Barbara can be reached at firstname.lastname@example.org.