Web site: www.rwjf.org
The Robert Wood Johnson Foundation, based in Princeton, NJ, is the nation's largest philanthropy devoted exclusively to health and health care. It became a national institution in 1972 with receipt of a bequest from the industrialist whose name it bears, and has since made more than $2 billion in grants.
The Foundation concentrates its grantmaking in three areas: to assure that all Americans have access to basic health care at reasonable cost; to improve the way services are organized and provided to people with chronic health conditions; and to reduce the personal, social, and economic harm caused by substance abuse--tobacco, alcohol, and illicit drugs.
Last December, the first of several research papers resulting from a ten-year, multi-million dollar study on how we die in America was published in The Journal of the American Medical Association. Known by its acronym, SUPPORT, the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment was designed to improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying. The results stunned the health care community because none of the study's interventions significantly influenced any of the outcomes it was designed to improve.
One of the most insightful explanations of the SUPPORT results pointed to a popular and medical culture that so forcefully resists the notion of death that the families, health care practitioners, and patients themselves are unwilling to ask questions and make the kinds of decisions that would diminish the fear surrounding the process of dying in this country. Funded by The Robert Wood Johnson Foundation, the SUPPORT study continues to provide the Foundation and others with a platform on which debate and additional research is being conducted.
A brief summary of recent activities concerning the Foundation's efforts to improve the quality of life for people at the end of life includes:
The Robert Wood Johnson Foundation is the nation's largest philanthropy devoted exclusively to health and health care. Following last year's widely publicized SUPPORT study on care at the end of life, the Foundation continues to fund projects to improve such care, including expanding the principles and practices of hospice; identifying barriers and opportunities to improve end-of-life care in managed care settings; and developing a toolkit to help hospitals measure quality of care at the end of life. To help trigger a national dialogue about end-of-life issues, the Foundation is funding a grassroots end-of-life discussion kit, of which BEFORE I DIE is a major component.
Last Acts, a coalition of more than 100 prominent organizations working to improve the quality of care for dying people. Former First Lady Rosalynn Carter is the coalition's honorary chair. Visit the Last Acts Web Site for more information.
- Project 2010 A.D.: Five public forums being held in Florida in 1996 and 1997 to examine how health and long-term services could be structured to safeguard the dignity of people as they age.
- Research to improve care for dying patients in managed care settings.
- National survey of hospice volunteers and staff.
- Developing a toolkit to help hospitals measure quality of care at the end of life.