THE 1990S: SIGNAL EFFORTS AND EVENTS AROUND PALLIATIVE AND END-OF-LIFE CARE

Central among the early prime movers in palliative care has been the Robert Wood Johnson Foundation (RWJF), which funded the groundbreaking Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. RWJF has continued to shine the spotlight on end-of-life needs through its “Last Acts” program, which encourages activities at local levels and other activities; its “Promoting Excellence in End-of-Life Care” program (see Box 1-2); and others, including sponsorship of a recent six-hour public television special on palliative and end-of-life care (“On Our Own Terms: Moyers on Dying,” September 2000).

Some of the touchstone events in end-of-life and palliative care are described in the sections that follow.

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment

Asked to name the most influential phenomenon in moving end-of-life care in the 1990s, most who know the field would probably name SUPPORT—the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. SUPPORT was a two-stage research project, beginning with an observational study of aspects of end-of-life care, followed by a randomized intervention trial to try to improve the quality of care found in the first stage, with the emphasis on communication between caregivers and patients. A companion study, HELP—the Hospitalized Elderly Longitudinal Project—was similar to the first stage of SUPPORT, but included only the very old, people 80 years and over (see Box 1-2 for a description of the studies). SUPPORT and HELP were funded solely by the Robert Wood Johnson Foundation at more than $29 million, the largest project ever funded by RWJF (Phillips et al., 2000).

The SUPPORT randomized trial is “negative,” in that the interventions did not improve quality of care in the hoped-for ways. The irony is that SUPPORT and HELP focused the attention of professionals and the public on care of the dying—stories about the project made front-page news in the national press—in a way that nothing else had. SUPPORT also catalyzed new thinking about the nature of the problems underlying care at the end of life and about what changes would be needed to fix them. Simplistically, we moved from hoping that doing A, B, and C to improve communication would result in better care (widely believed by experts to be the answer before SUPPORT), to an understanding that much broader system-wide and society-wide changes would have to take place. The depth and richness



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