For the dying and those who care for them, the end of life is frequently a time filled with physical pain, feelings of abandonment, and isolation. American culture, intent on curing disease and prolonging life, often fails to provide support during this critical phase of life.
The Project on Death in America was created by philanthropist George Soros to change this situation—to transform the culture and experience of dying through initiatives in research and scholarship, the humanities and the arts, and to foster innovations in provision of care, public education, professional education, and public policy.
Along with other funders and organizations, PDIA is doing what it can to spark discussion about the difference between death as it is presently experienced in America and how we would wish it to be. The popular media and professional health care journals have responded by giving increasing attention to the culture of dying. In this way, we are forming the nucleus of a broad public discussion that will help us determine the best kind of care for the terminally ill.
People need to ask themselves important questions like: “How will I die?” “Where will I die?” “Who will care for me?” “Who will help my caregivers?” “Will my pain be controlled?” “Will my values be preserved to facilitate the quality of my life at the end of my life?” “How will my care be paid for?” and “Will my cultural, religious, and spiritual beliefs be respected?” Real autonomy at the end of life can only be realized when a full range of treatments is available and affordable, and when patients and families understand their options.
What are the main barriers to quality care at the end of life? The short list includes deficiencies in many of the current models of care for dying patients and their families; serious weaknesses in the education of healthcare professionals about care near the end of life; and major inadequacies in our knowledge about the course, treatment, and outcomes of care for dying patients and their families.
One of the major barriers to appropriate end-of-life care is physicians’ lack of knowledge and training in managing pain and assessing psychological issues. This dearth of professional knowledge reflects shortcomings in medical school, residency, and fellowship training programs, and is magnified by a lack of institutional commitment to the care of patients at the end of life.
PDIA has addressed the major barriers to improved care of the dying through its Faculty Scholars Program, Social Work Leadership Development Awards, and a series of special initiatives on public policy, law, and the needs of vulnerable populations.
A major goal of the Faculty Scholars Program is to promote the visibility and prestige of clinicians in end-of-life care and to enhance their effectiveness as academic leaders and mentors for future generations of health professionals.
To date, PDIA has supported 68 Faculty Scholars, representing more than 40 medical schools in the United States and Canada. These clinicians and scholars are committed to institutionalizing change in their own spheres and will serve to transform their institutions from within through physician education programs in the principles and practice of palliative and hospice care.
A National “Death” Discussion
Since the majority of Americans die in institutions—whether hospitals or nursing homes—creating role models for change in these institutions is critical to having an impact on the medical aspects of the dying process.
The PDIA grants program supports innovative approaches to understanding and changing the process of dying and bereavement. From initiatives in the arts and humanities to support for community grief and bereavement programs, PDIA funds a broad range of cultural perspectives to facilitate a national “death” discussion.
Yet such a discussion will not produce societal change without the development of organizations that can provide the professional services necessary to sustain the growing field of palliative care. At the grassroots level, there are already a number of consumer organizations and advocacy groups, including Americans for Better Care of the Dying and Partnership for Caring, whose membership provides public education.
To encourage broader philanthropic funding in this area, PDIA, along with the Robert Wood Johnson Foundation, the Nathan Cummings Foundation, the Commonwealth Fund, and the Rockefeller Family Foundation, created Grantmakers Concerned with Care at the End of Life. This initiative is working to expand funding coalitions and serves as a resource for foundations interested in funding end-of-life care.
Along with our U.S.-based efforts, PDIA is developing initiatives to expand palliative care programs in Eastern and Central Europe and is looking for other funders who discern the relationship between such efforts and programs in the care of the elderly, patients with AIDS, patients with cancer, and patients with chronic disease.
We must improve medical care for the dying and reduce the enormous burdens placed on their caregivers. We must promote better communication between doctors and patients, and educate all physicians, healthcare professionals, and patients about the principles and practices of quality end-of-life care.
Kathleen Foley is director of the Project on Death in America. She is also an attending neurologist in pain oral palliative care service at Memorial Sloan-Kettering Cancer Center and is professor of neurology, neuroscience and clinical pharmacology at Cornell University Medical College.