Renowned choreographer, Bill T. Jones, a recipient of the MacArthur Foundation "genius" award, helped set the tone for the meetings when he urged attendees to stop thinking of the dying as "them," and to recognize that we are all one, bound by dreams, hopes, fears, birth, and death.
The conference ended with a more pragmatic announcement from Johnson representative Lewis G. Sandy, M.D. that funding will continue to flow to the Last Acts campaign. The Foundation, Sandy says, is now considering ways to create Last Acts-like coalitions at the state and regional level. The level of local interest is evidenced in more than 600 letters of intent received in response to a Foundation call for projects to improve care of the dying. According to Sandy, the Foundation is preparing to make several million dollars available in coming months to develop regional coalitions.
During an intensive day-long series of panel discussions, attendees heard the latest on research developments, financial systems, institutional culture, the language of dying, and media involvement in death and dying issues. Ira Byock, M.D., delivered a sweeping keynote address highlighting the complex issues doctors, medical institutions, insurers, payors, and consumers are facing.
Byock described death and dying as a huge pink boulder on the range of American experience. He pointed to the levers and forces needed not only to make that boulder less prominent, but to erode it until it becomes another element of the American landscape.
Many groups and forces will have to apply the four levers Byock described-standards, measures, accreditation, and policy and public expectations. Those groups include not only the medical establishment and consumers, but payors, insurance companies, philanthropic funders, and the media. These actors will be moved by forces such as economics, personal responsibility, creativity, and a "healthy skepticism" that is typical, Byock says, of Boomers, many of whom now confront death for the first time as their parents age.
In a panel discussion, "American Culture and Our Attitudes Toward Death," Neal Baer, M.D., writer/producer for NBC's ER, said the media has its role to play. He noted that ER is an important place to tell those stories: A recent survey of ER viewers (some 30 to 40 million each week) revealed that almost half say they have gotten medical information from the show.
Others in the media concurred. Mike Vitez, Pulitzer-prize winning journalist from the Philadelphia Inquirer, emphasized the need to make death a less fearful element of our culture by embracing stories told by dying people and their families. Vitez, and his colleagues from broadcast and print media, agreed that individuals are usually willing to tell their stories about how their loved ones have died in American institutions, and that institutions must be more willing to allow journalists to report on what is happening in hospitals and hospices around the country.
Bill T. Jones, who has lived with HIV/AIDS for many years, demonstrated the power of storytelling when he read from his journal notes, sharing his passion for life in the face of a life-threatening illness and describing his experiences during the illness and death of his partner and companion, Arnie Zane.
Jones says that in the process of conducting mortality forums and workshops with people who are dying, he has discovered many common denominators for how to live: to have a passion for life, to set goals that remain flexible, to develop a sense of community, to live in the moment, and to cherish the small things.
For Jones, these elements coalesce in dance. For others, they coalesce in serving people who are dying and their families, and by supporting those who remain behind.
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