The Missoula Demonstration Project

Except here. Something is happening in Missoula that sets us apart. With the help of the Missoula Demonstration Project: The Quality of Life's End (MDP), Missoula is gaining a broader perspective and a sensitivity to the needs of people who are dying, their caregivers and grieving family.

Not that Missoula is a utopia. The many problems that plague dying in America are felt here as well: challenges of pain management, inconsistent respect for peoples' preferences for care, breakdowns in clinician-patient communication, financial stress, too little support for family caregivers, people feeling isolated and alone. They may be less severe in our community, but Missoula is the real world.

What is different here is that we have not allowed ourselves to be confined by the suffering-or-suicide dichotomy nor mesmerized by Kevorkian's promise of a quick fix. Instead, we are taking a hard look at dying and grief and taking steps to improve the quality of life's end. We don't have all the answers, but we are asking critical questions: What individual and collective responsibility -- and "response-ability"-- do we have toward people who are dying -- our family members, friends, but also our neighbors? What value is there in the last phase of life? Can there be any value in the process of dying? Missoulians are investigating what it means to live in a community with one another in ways that integrate dying and caregiving within the continuum of human life.

The Missoula Demonstration Project is a collaborative, community-wide effort to study and transform end-of-life experience and care. Both local hospitals and every nursing home and home health provider in Missoula are actively participating, along with many of our town's doctors and nurses, healthcare aides, social workers and EMTs. So too are ministers, faith community members, artists, writers, educators and everyday people who are simply interested.

During its first few years MDP has focused on research. We've taken -- and are now developing -- a high-definition snapshot of end-of-life experience and care. The data will serve as a baseline for future research, including comparisons with two demographically similar communities in the northwest. Over the next few years the Project Missoula Demonstration Project will employ these research findings to fuel ongoing discussions of how we can make things better. MDP's strategy is not to impose a specific vision or set of values, but to authentically involve people throughout our community in defining what success would look like and in working together to achieve success.

This process has already yielded tangible results:

- The Project's Pain Task Force has conducted conferences and workshops in which literally hundreds of area doctors, nurses and pharmacists improved their knowledge skills in managing received pain management training. State of the art pain assessment tools and treatment protocols are now available in every healthcare setting in Missoula. St. Patrick's recently added pain as a "vital sign" to its computerized clinical flow sheets as a "vital sign", right alongside temperature, blood pressure, pulse and respirations. Similar efforts are underway in other healthcare settings.

- The Advance Care Planning Task Force developed "My Choices", a user-friendly form which combines a living will and a power of attorney for healthcare. Every local healthcare organization has endorsed its use, making Missoula the first city to have a consistent community-wide document for communicating preferences for care.

- The Faith Community Task Force is helping to expand the capacity of local ministers and congregations to support members who are confronting life's end and family members who are struggling to provide care. Just last week many faith community leaders came together for a full day to explore these issues.

- A Life Stories Task Force has successfully raised local awareness of the precious nature of the our collective memories. So successful, in fact, that a separate non-profit community organization, Story Keepers, Inc., has emerged to continue this nurturing work.

Plans are on the drawing board for new research initiatives, new task forces in education and caregiving, and new avenues for volunteer training and services to local Missoula local families, and new research initiatives.

The work within MDP and throughout Missoula on these broad issues is for the good of all of us all. Many of us will age, become caregivers, and eventually die right here, in the shadow of our mountains. But our efforts have importance far beyond the Five Valleys. Already we have attracted the attention of national foundations, academic institutions, policy makers in Washington, D.C., and national media. We've received inquiries from people in places like Bend, Ore., Akron, Ohio, and St. Joseph's, Mo., all of whom are replicating one or more aspects of our community's efforts. Researchers from around the country are using our survey instruments and will be contributing contribute data to expanded comparative studies.

As baby boomers age and the soaring number of people living with chronic illness or advanced old age soars, issues regarding dying and caring for those who are dying will remain at the forefront of our national priorities. Missoula has an opportunity to serve our nation simply by caring for one another locally in ways that combine medical excellence with compassionate and unabashedly loving care. We can build creative community models for ensuring people are comfortable and feel wanted, worthy and dignified as they die.

Not too many years from now, when Kevorkian has become just a footnote, whether people are discussing end-of-life-care in Peoria, Pensacola or Petaluma, you can be sure someone will ask, "Have you heard what they're doing in Missoula?" In fact, many already are.

Ira Byock, M.D., is a faculty member at the University of Montana's Practical Ethics Center. He is co-founder and principal investigator for the Missoula Demonstration Project.

A Loving Death
Ira R. Byock, M.D.
April 28, 1999