The Missoula Experiment: How a small town learned to make dying a part of living
By RICHARD ATCHESON of MODERN MATURITY
At the confluence of the Bitterroot and Clark Fork rivers, surrounded by mountains, lie the valley town and county of Missoula, Montana (population 91,000). It's a pleasant place, well known for leafy streets and easy living. And it will soon be better known as the crucible for a remarkable social experiment called The Missoula Demonstration Project (MDP)—an effort now well into its fifth year, undertaken by a tiny staff and a cadre of more than 100 volunteers, to find out what the people of Missoula actually want the nature of their dying to be, and to help them to have it. They are the first community in America who have ever been asked.
The experiment began in the imagination of a local doctor, Ira Byock. During his medical residency in California, his father, terminally ill with cancer, agreed to die in Byock's Fresno home, attended by his wife and son and daughter-in-law. It was a hard but illuminating experience that Byock thought did honor to them all. And it stayed in his mind for years before his thoughts about how he wanted to change the American way of dying began to jell.
Byock, born in Newark, New Jersey, and raised in Asbury Park on the Jersey shore, moved to Missoula in 1987, bringing with him a background in family practice and emergency medicine. Missoula already had a hospice program in place, and Byock soon became involved with it. In 1992 he helped bring to town a school of music-thanatology called the Chalice of Repose Project. Its faculty and students keep vigil at the bedsides of the dying with singing and playing the harp. But Byock was looking for more.
Finally, in 1996, he started to talk to friends—including Barbara Spring, a gerontologist—about the idea of opening a public dialogue in Missoula that would inquire into people's attitudes on dying. "I'd done some social marketing before and I was ready for the rolling eyes," he says. " 'Oh, wow, what is he up to now?' But I have to tell you, not one person had that response. We had this small group of people interested in hospice care and we framed the challenge: 'How can we integrate dying into the ongoing life of our community?' Barbara and I said, 'Let's just call a meeting and see.' We took a small conference room at the Aging Services office and it was packed, people out in the hall. We got a bigger hall for the next meeting and again there wasn't enough space for the turnout. And then, frankly, the enthusiasm became infectious."
It was evident that the time had come in Missoula to talk about a subject that only a few years earlier had been almost universally avoided. (And it still was in the world outside. Byock wrote a book entitled Dying Well that was published by Riverhead Books in 1997 and never got off the ground. "It was probably because of the title," Byock says. "People on planes would ask me please to cover it up.")
Out of a pool of volunteers came a board, and committees, and funding—first a $10,000 planning grant from the Nathan Cummings Foundation, followed by $140,000 from the same source to start the program. Soon after, the Open Society Institute's Project on Death in America kicked in an additional $50,000. (And MDP, which began with conversations around Byock's dining-room table, now has an actual home of its own—the old parsonage of the Methodist Church, downtown.) An early move was to create and distribute a community survey to assess Missoulians' attitudes and experiences with the end of life. The survey contained 73 questions, went to a random sample of 999 residents of Missoula County, and produced an astounding 60 percent return. The preliminary results, not released until March of this year, revealed that the desires expressed by most people surveyed—to "have things settled" with their families during the dying process, to die in comfort, without pain—were in fact being realized by less than half the dying population, according to studies that analyzed more than 250 deaths in Missoula County.
Spring and Byock's early efforts led to the formation of several task forces, made up of staff and volunteers. "Through the pain task force," Spring says, "we were able to get pain recognized as the fifth vital sign, in both local hospitals, the hospice, a nursing facility, and a home health agency." This was done during a three-year project that researched the knowledge and practices of local clinicians toward pain; one result was that the project printed hundreds of copies of a one-to-ten pain rating scale on small cards carried by professionals and patients alike. The scale enables patients to make their degree of pain known to the professional.
Another early task force on storytelling at the end of life—encouraging people to write their life histories or relate them orally—has grown into a nonprofit agency of its own called StoryKeepers, and MDP is planning to publish a book with 15 of these histories. One storyteller, knowing that he didn't have long to live, told his story to Judy H. Wright, a personal historian who writes memoirs and teaches life-story writing classes. According to Wright, the man became very excited while recounting his life. Wright wrote the story overnight, and returned the next day so that her client could proofread the work. "I need six copies," he said; he wanted one each for his two children and four grandchildren. And the day after that, he died. "I think telling his story was a completion of his life," Wright says.
A task force working on advance-care planning created an advance-care directive for Missoula County. Called "My Choices," it puts together in one document all the materials necessary for completing a Living Will and a durable power of attorney for health care. It adheres to Montana law, and it's in plain language.
Also currently active is the faith communities task force, chaired by Tom King, an ordained minister in the Evangelical Covenant Church and a hospice chaplain. "It's easy to imagine the worst, and what we don't want at the end of life," he says. "The project helps by providing a forum to imagine what we do want. We're seeking to learn from people of many different religious traditions about how they ease the experience of death, dying, and grief."
A schools task force is culling information on what schools in the county are doing about end-of-life issues. One member, Gary Stein, teaches social studies at Sentinel High School and, in his psychology course, includes an extensive unit on thanatology. "I teach the framework of human development from prenatal care onward," he says, "and dying is part of that. The students respond very strongly. It's the most honest the class ever gets."
For Barbara Spring, the next objectives for the project are "getting into the workplace and neighborhoods." And areas that "cross over," as she puts it, "such as the arts." The project has already sponsored two art shows locally. It also paired with a local theater group, The Montana Rep, to mount a production of Margaret Edson's Pulitzer Prize-winning play, Wit, about a woman dying of ovarian cancer.
But the thing most engaging Spring's interest at the moment is a proposal to create care circles around a caregiver and recipient. "You know how easy it is to say to a friend whose spouse is dying, 'Call me if you need anything,' and how hard that may be for a friend to believe," Spring says. "Too often it isn't believed at all. In this case there will be a team captain who will know about the trajectory of that particular disease, will know who's in the circle, and will be ready to help."
And where is Ira Byock as we speak? "Oh, he's all over the place," says an MDP staff member. "We don't even think about where he is anymore. We just e-mail him." While Byock continues as principal investigator for the project and is deeply connected to it, he has also become the director of a national program of The Robert Wood Johnson Foundation, called "Promoting Excellence in End-of-Life Care." The job has plunged him into a whirlwind of responsibilities, and is making him a national figure, as the dialogue he prompted in his mountain valley town has expanded to embrace a new consciousness across the nation.
Richard Atcheson is the executive editor of MODERN MATURITY. This story is one part of a multifaceted package of stories and resources published in the September/October 2000 issue of the magazine and available online.Copyright © 2000 Modern Maturity