And I believe that if you can get information to the public when they need it, they will do what needs to be done.The adage that it takes a whole village to raise a child may be equally true for people nearing the end of life: it takes a whole village to care for the dying. In Utah, a new coalition, Partnership to Improve End-of-Life Care is encouraging professionals and the public to come together in just such an effort. According to project director Jay Jacobsen, M.D., chief of the Division of Medical Ethics at LDS Hospital, “An informed public is more likely to act. And I believe that if you can get information to the public when they need it, they will do what needs to be done.” The project has 150 partners statewide who can reach Utah’s rural communities, community organizations, and elders. Partners include the state agency on aging (whose area agencies on aging play a key role in reaching seniors in rural areas and small towns), Cancer Pain Relief-Utah, the Division of Medical Ethics at LDS Hospital, and many others.
“This project is both multi-faceted and innovative. Just two approaches that warrant attention are Dialogue to Action, a program that directly involves people who have recently lost loved ones in policy making decisions and the annual Quality of Care at the End-of-Life Week linked to Memorial Day,” said Myra Christopher, director of the Community-State Partnerships to Improve End-of-Life Care, and CEO of the Midwest Bioethics Center.
When the program was launched last year, Utah Governor Leavitt proclaimed the week following Memorial Day as “Quality of Care at the End of Life.” The group hosted a forum, “Living and Dying: Let’s Talk About It,” with speakers including Norma Matheson, widow of Utah’s widely admired Democratic governor Scott Matheson, who died of cancer in 1989.
The Salt Lake Tribune reported that Norma Matheson* told the crowd that her family, like many who face cancer, believed that the Governor would survive, that the cancer had been “caught early,” and that treatment would lead to cure. “They said they got it early and that he could go about his normal activities,” Norma Matheson said. Ten months later, Governor Matheson was dead. Mrs. Matheson told the audience that although she appreciated the medical team’s efforts, she and her family could have used a “dose of reality” about her husband’s illness.
The new partnership aims to do just that, by helping families - and physicians - realize how quickly and unpredictably a patient’s status can change. Among the partnership’s goals are to promote dialogue and outreach among families and patients, health care providers, religious leaders, and regulatory agencies.
Jacobsen said that one of the partnership’s most productive collaborations has been with the state’s Division of Library Science, which is working to disseminate information through libraries statewide.
“Libraries are really a user-friendly resource,” Jacobsen said. “The state is working to train librarians to guide people to appropriate resources [on end-of-life issues]. Libraries are a neutral place to meet, they’re apolitical. They have a real neighborhood feeling.”The decision to work through libraries was based in part on an informal survey of seniors who were attending an annual conference on aging. Asked how they got health information, one-third cited the Internet, and another two-thirds their local libraries.
Health Insights, a Medicare peer review organization, handles administrative and financial tasks for the partnership. It also has helped get the group’s website up and works to keep partners current by posting a monthly calendar and distributing a monthly newsletter. Tiffany Stoddard, project manager, said that Health Insight plays an important role in “getting partners to coordinate their strengths, to leverage groups and to get them to move forward.” Health Insights works closely with the partnership steering committee to promote the project at various professional meetings around the state, such as the annual meetings of hospice, nursing associations, and gerontology groups.
The partnership got an early boost from the Cancer Pain Relief-Utah project, which provided an initial grant of $20,000. Other partners have found ways to “match,” either by offering services or direct financial support. For instance, a Utah public relations firm has donated about $60,000 in public relations activities. This group is developing a public relations campaign on cancer pain relief, focusing on the message that pain can be relieved and directing viewers to resources.
As the partnership has grown, it has had to learn to work with the array of agendas and ideas such a large partnership can generate. According to Susan Larsen Beck, Ph.D., Associate Professor at the University of Utah College of Nursing, “We first had a challenge of too many ideas - and the question of whether it was a problem to have too many ideas. We needed to balance our work as an innovation engine with our program focus.” Ultimately, the group clarified the roles and goals of each partner.
According to Dr. Jacobsen, “Each partner is driven heavily by interest - and by self-interest to learn and achieve their own goals.” Upcoming endeavors include more town meetings in Salt Lake and Saint George; the group will convene four programs annually over the next three years
To learn more about the partnership, visit its Website at: www.med.utah.edu/ethics/partnerships
*Information on the Utah forum and quotes
from Mrs. Norma Matheson from, "Improving Care in Utah for a Universal Moment Death,” by Norma Wagner, The Salt Lake Tribune, June 10, 1999.
This content is provided by Americans for Better Care of the Dying. For more information, visit www.abcd-caring.org.