Useful Web Sites
End of Life: Topics and Organizations Links
Aging with Dignity
Five Wishes approach to Advance Directives
Americans for Better Care of the Dying
Advocacy group to improve care at the end of life.
Caring Connections
A program of the National Hospice and Palliative Care Organization (NHPCO), Caring Connections is a national consumer engagement initiative to improve care at the end of life. Supported by a grant from The Robert Wood Johnson Foundation, it includes sections on many topics relevant to the caring and preparing for oneself and loved ones so life can be lived well until the end as well as Advance Directives for each state.
Dying Well
Resources for people facing life-limiting illness, their families and their professional caregivers
Family Caregiver Alliance
Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. FCA now offers programs at national, state and local levels to support and sustain caregivers. Their online database of legislation can be searched by state or according to the policy strategy used to support family caregivers, such as tax incentives, Medicaid policies, and respite assistance. For more information, visit the Federal and State Caregiving Legislation section of FCA’s website. Click here for a Summary of Bills from 2004 to 2006. To keep abreast on current federal and state caregiving legislation, subscribe free of charge to Caregiving Policy Digest.
Growth House
International gateway to resources for life-threatening illnesses and end of life care. An excellent site for both lay people and professional care givers on a wide variety of topics.
Health Advocacy Program, Sarah Lawrence College
The United States’ first master’s degree program in Health Advocacy and a founding member of the Westchester End-of-Life Coalition.
Living Old
For the first time in American history, “the old old”—those over 85—are now the fastest growing segment of the U.S. population. “Living Old,” a Frontline program, is a powerful and intimate journey into the uncharted territory of Americans living longer than ever—and what it means for them, their loved ones and our society.
National Hospice and Palliative Care Organization
The largest nonprofit membership organization of hospice and palliative care programs and professionals in the united States.
On Our Own Terms: Moyers on Dying
Based on the Public Television Bill Moyers series about the way patients an caregivers are working toward changing the culture of denial of death in America.
Promoting Excellence in End-of-Life Care
A national program of The Robert Wood Johnson Foundation (RWJF) providing technical support to innovative programs in healthcare settings and peer workgroups comprised of clinicians and researchers from across the country to deliver palliative care to special populations in challenging settings.
The Jason program
Based in Maine the Jason Program promotes its community-based model of patient and family focused, interdisciplinary, coordinated care for critically and terminally ill children.
TIME: Toolkit of Instruments to Measure End of Life Care
Patient-focused, family-centered survey instruments that address the needs and concerns of patients and their families, as defined by them.
U.S. Living Will Registry
A privately held organization that electronically stores advance directives, organ donor information and emergency contact information, and makes them available to health care providers across the country 24 hours a day through an automated system.
Hospice and Palliative Care Links
American Academy of Hospice and Palliative Medicine
An organization of physicians and other medical professionals dedicated to excellence in palliative medicine
American Chronic Pain Association
A self-help network of local support groups
American Pain Foundation
A nonprofit consumer group
American Pain Society
A group that promotes research, education and treatment
American Hospice Foundation
An organization to improve access to quality hospice care through public education, professional training and consumer advocacy
Children’s Hospice International
CHI serves as an advocate in meeting the needs of children with life-threatening conditions and their families.
City of Hope Pain/Palliative Care Resource Center
A pain-management clearinghouse
End of Life/Palliative Education Resource Center
Peer Reviewed Educational Materials by End of Life Topic
Hospice and Palliative Nurses Association
National Hospice and Palliative Care Organization
Membership organization representing hospice and palliative care programs and professionals in the United States
National Pain Foundation
The NPF is a non profit organization dedicated to the empowerment and education of pain patients and their families
National Prison Hospice Association
Promotes hospice care for terminally ill prisoners