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End-of-Life Policy Reform Americans for Better Care of the Dying -- works toward reform by focusing improved pain management, better financial reimbursement systems, enhanced continuity of care, support for family caregivers, and changes in public policy. Community-State Partnerships To Improve End-of-Life Care -- a broad-based, multidisciplinary coalition of 21 state-based groups working to promote policy change and support for high-quality, comprehensive end-of-life care. End-of-Life Choices -- advocates for options in dying for terminally ill, mentally competent persons, including appropriate pain and palliative care and the right to hasten death under careful safeguards. Last Acts Partnership -- national coalition of organizations working to improve care for people who are dying and their families; serves as a clearinghouse for sharing information and ideas at the national, state and local levels. In particular, see: Project on Death in America (PDIA) -- funds efforts to understand and transform the culture and experience of dying and bereavement in America. Promoting Excellence in End-of-Life Care
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At the End of Life (AARP) -- general resources related to planning ahead. See also:
DyingWell.org -- written resources and referrals to organizations, web sites and books to empower persons with life threatening illness and their families (Dr. Ira Byock). Growth House -- resources for life-threatening illness and end of life care.
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Education on Palliative and End-of-life Care (EPEC) -- provides educational curriculum on fundamental palliative care skills in communication, ethical decision-making, psychosocial considerations, and symptom management. End-of-Life Nursing Education Consortium (ELNEC) Project -- a comprehensive, national education program to improve end-of-life care by nurses. End-of-Life Physician Education Resource Center (site restricted to registered users) -- assists physicians and other educators involved in end of life (EOL) education by peer-reviewing instructional and evaluation materials and providing a list of core resources and opportunities for training. Fanlight productions -- Commercial video resources on death and dying.
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American Academy of Hospice and Palliative Medicine -- an organization of physicians and other medical professionals dedicated to excellence in palliative medicine, the prevention and relief of suffering among patients and families by providing education and clinical practice standards, fostering research, facilitating personal and professional development of its members, and by public policy advocacy. American Hospice Foundation -- supports programs that serve the needs of terminally ill and grieving individuals. Center to Advance Palliative Care (CAPC) Mount Sinai School of Medicine (NY) -- dedicated to increasing the availability of quality palliative care services in hospitals and other health care settings for people with life-threatening illnesses, their families, and caregivers. Hospice Association of America -- national health care trade organization representing hospices, caregivers, and volunteers who serve terminally ill patients and their families; advocates the industry's interests before Congress, the regulatory agencies, other national organizations, the courts, the media, and the public. Hospice Education Institute -- works to inform, educate, and support people seeking or providing care for the dying and the bereaved, or themselves coping with far advanced illness, or with loss. Hospice Foundation of America -- provides leadership in the development and application of hospice and its philosophy of care through programs of professional development, research, public education and information; assists those who cope either personally or professionally with terminal illness, death, and the process of grief. National Hospice Foundation -- works to broaden America's understanding of hospice through research and education. National Hospice and Palliative Care Organization -- a membership organization representing hospice and palliative care programs and professionals in the United States; works to improving end-of-life care and expanding access to hospice care with the goal of enhancing quality of life for people dying in America and their loved ones. Pain & Policy Studies Group (University of Wisconsin) -- works toward striking a balance among international, national and state policies to ensure adequate availability of pain medications for patient care while minimizing diversion and abuse; supports a global communications program to improve access to information about pain relief, palliative care, and policy. Pain and the Law -- coverage of state law and regulatory policies, clinical practices, and developments in public policy related to the medical management of pain. Sponsored by the American Society of Law, Medicine & Ethics.
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Means to a Better End (State Report Cards on End-of-Life Care) Medicare Hospice Days per Patient Served (state-by-state data for 2002)
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Approaching Death: Improving Care at the End of Life, Christine K. Cassel, MD (Editor) [1997] End-of-Life Care: Clinical Practice Guidelines, Kim K. Kuebler (MN, RN); Patricia H. Berry (PhD, RN); Debra E. Heidrich (MSN, RN) (Editors) [2001] Handbook for Mortals: Guidance for People Facing Serious Illness, Joanne Lynn (MD) and Joan Harrold (MD) [2001] Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians, Joanne Lynn (MD), Janice Lynch Schuster, Andrea Kabcenell (RN, MPH) [2000] Long Goodbye: The Death of Nancy Cruzan, William H. Colby (JD) [2002] Managing Death, James M. Hoefler, PhD [1997] |
