NEW YORK - The Open Society Institute’s Project on Death in America (PDIA) today issued a special report, Transforming the Culture of Dying. The report reviews nine years and $45 million devoted to improving care available to patients and their families at all stages of serious illness.

The report highlights examples of strategic grantmaking and includes specific funding recommendations that focus on areas of special opportunity where philanthropic investment would make a dramatic difference in the lives of patients and families.

PDIA, which completed all grantmaking at the end of 2003, issued the report to highlight the enormous impact of private philanthropy on the development of palliative and end-of-life care services and to share with the greater funding community lessons learned over the decade.

“Over the past decade, foundations have had an enormous impact on the development of palliative and end-of-life care services in the United States,” said Gara LaMarche, Vice President and Director of U.S. Programs of the Open Society Institute. “Thanks to grantmakers across the country, people with life-threatening illnesses are now more likely to be cared for by healthcare professionals-nurses, clergy, social workers, and doctors-trained in pain management, knowledgeable about advance care planning, and respectful of how religion or culture can affect a patient’s experience of illness and dying. Caregivers and patients are learning that isolation, pain, and inadequate care need not define the dying process.”

“We have no doubt that the field of palliative care will continue to grow and that increasing numbers of people will come to expect skilled and compassionate care at all stages of serious illness,” said Kathleen Foley, M.D., PDIA’s director. “Any foundation concerned with improving the care of people with life threatening illness-regardless of geographic focus, grant size, or funding priorities-has an important role to play.”

The report asserts that all people with serious or advanced illness should expect and receive reliable, skillful, and supportive palliative care. Palliative care aggressively relieves pain and other physical symptoms to give patients the highest quality of life possible at all stages of serious illness. Palliative care can be delivered alongside potentially curative treatments and is best delivered by an interdisciplinary healthcare team that can address physical, psychological, and practical problems. Palliative care supports families throughout the patient’s illness and is sensitive to the importance of religious, spiritual, and cultural responses to death and bereavement.

“We hope potential funders will use this report to consider how the communities they serve will benefit from improved palliative and end-of-life care services, and how they can integrate palliative care into current and future funding priorities,” added Foley, who is also an attending neurologist in the Pain and Palliative Care Service at
Memorial Sloan-Kettering Cancer Center in New York City and a professor of neurology, neuroscience, and clinical pharmacology at the Weill Medical College of Cornell University.

Established in 1994, PDIA was George Soros’s first U.S.-based philanthropic initiative, established after the death of his parents "to promote a better understanding of the experiences of dying and bereavement and by doing so help transform the culture surrounding death," Soros said.

PDIA created funding programs in professional and public education, the arts and humanities, research, clinical care, and public policy designed to build the field of palliative medicine, and place improved care of the dying on the public agenda.

Copies of Transforming the Culture of Dying are available to download from the OSI website. For a print copy of the report, call 212-548-0334 or email pdia@sorosny.org.