Transforming the Culture of Dying: The Project on Death in America 1994-2003

The Open Society Institute's Project on Death in America (PDIA) was created in 1994 with an ambitious goal: to help transform the experience of dying in the United States. Over the course of nine years, PDIA created funding initiatives in professional and public education, the arts and humanities, research, clinical care, and public policy. PDIA and its grantees have helped build and shape this important and growing field, and have placed improved care of the dying on the public agenda.

PDIA completed all grantmaking at the end of 2003, having distributed $45 million in grant awards to organizations and individuals working to improve care for dying patients and their families.

PDIA's report, Transforming the Culture of Dying, was written specifically for other funders. It traces the development of PDIA's funding initiatives over the course of nine years and highlights examples of strategic grants. The report includes specific funding recommendations that focus on areas of special opportunity where philanthropic investment at any level would make a dramatic difference in reducing suffering and allowing people to live out their lives in dignity and comfort.

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. Thanks to grantmakers across the country, people with life-threatening illnesses are now more likely to be cared for by health care 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.

PDIA hopes that grantmakers 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.