Unexpected Returns

The findings and lessons from a large, multiyear research-and-demonstration project that investigated the care provided to critically ill hospitalized patients at the end of life are presented in this chapter of the Anthology. SUPPORT, as the study was called, was motivated by a sense that services provided to people who are dying overemphasize heroic, high-tech innovations at the expense of caring and comforting. Although the motivation was simple, it turns out that the problem is not. This chapter describes the complexity of addressing the issue of what services ought to be delivered at the end of life and the difficulty of changing norms and practices in the world of medicine. The author emphasizes that it is not so simple even to identify what we mean by "the end of life."

Considerable effort was given to ensuring that the project's findings would receive widespread media attention. As a result, the project seems to be provoking the wide-ranging and, we hope, sustained debate that is necessary to make progress on this problem. The study was reported in cover stories of weekly news magazines and many articles in noted academic journals. The researchers have been barraged with requests to appear on television and radio shows to discuss the implications of the findings.

The findings from the demonstration project at the core of the study were negative: the interventions did not achieve the goals expected. However, the large investment by the Foundation—which has totaled approximately $29 million to date—may have other payoffs. The findings clarified that changes in care at the end of life are not going to happen with marginal adjustments in the way we organize services. It takes a much more sustained effort on many fronts to refocus priorities for the care of the critically ill. Changes in social norms, professional values and social priorities all need to be part of the solution.