The leaders in these initiatives range from community hospitals and hospices to regional health care systems to national organizations such as the American Medical Association and the Joint Commission on the Accreditation of Health Care Organizations. Objectives are likewise varied as illustrated below and in later chapters and Appendix C.
In Missoula, Montana, a broad coalition of community leaders and health care providers is undertaking a community-wide demonstration project to examine and improve the care and support available to dying people and those close to them (MDP, 1996). The effort crosses the spectrum of services and settings—including emergency medical services, long-term care, hospice, hospital, and home care. The initiative includes a research component as well as the demonstration aspect.
Across the country in New York City, the United Hospital Fund has organized a three-year, 12-hospital project that will investigate how care is delivered to dying patients and test innovative palliative care programs (UHF, 1997). Hospitals receiving planning grants from the Fund will review care patterns for common fatal illnesses, use focus groups of survivors to assess satisfaction with care, survey hospitals to assess the availability of palliative care services, and convene focus groups of health care professionals to assess their knowledge and attitudes. Follow-up grants for selected hospitals will support the implementation and evaluation of new palliative care strategies.
Supportive Care of the Dying: A Coalition for Compassionate Care involves six Catholic health care organizations around the nation in work to promote appropriate and compassionate care for people with life-threatening illness, and their families (Super, 1996). The coalition coordinates efforts to develop and test care models, practice guidelines, leadership and skills, and educational and mentoring programs in health systems. One stimulus for the coalition was Oregon voters' approval of physician-assisted suicide in 1994, which demonstrated public concern about how modern medicine cares for the dying. An important element of the initiative is the convening of 50 focus groups around the nation to develop a better understanding of people's needs and expectations.
The Oregon vote (which was under judicial challenge while this report was being drafted) also prompted other efforts within that state to improve care at the end of life (Lee and Tolle, 1996). The Oregon Health Sciences University, for example, has helped organize hospitals, nursing homes, emergency medical personnel, state regulators, and others in a statewide effort to create practical, reliable procedures for seeing that patient preferences about end-of-life care are known and honored.
Researchers at George Washington University have organized a Center to Improve Care of the Dying. They have, among other projects, been working to improve the definition and measurement of outcomes relevant