There are numerous government, institutional and advocacy organizations working on issues of end-of-life healthcare. Find out what they are doing; read about current legislative measures; learn about the latest research on palliative care, find out what your rights are as a healthcare consumer and get ideas about what you can do to help. Organizations that are working on the issue:
Pain & Policy Studies Group is a University-based academic research, education, and communications program located in the Comprehensive Cancer Center at the University of Wisconsin Medical School.
Americans for Better Care for the Dying aims to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs.
Project on Death in America Their mission is to understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy.
American Pain Society is a multidisciplinary organization of basic and clinical scientists, practicing clinicians, policy analysts, and others. The mission of the American Pain Society is to advance pain-related research, education, treatment and professional practice.
Compassion in Dying works toward improved care and expanded options at life's end, with goals of comprehensive, effective comfort care for every dying person, and legal and humane aid-in-dying if suffering is unbearable and cannot be relieved.
Center to Advance Palliative Care CAPC is a resource to hospitals and other healthcare settings interested in developing palliative care programs.
The American Pain Foundation provides a survey to screen yourself for depression and access to on-line support.
Images of Brittney's family courtesy of Susie Fitzhugh © 2002. Only to be used in conjunction with the Heart-to-Heart project.
The Pediatric Palliative Care Consulting Service. Part of the Children's Hospital and Regional Medical Center in Seattle, profiled in Program Two of the Heart-to-Heart Radio Series. Palliative care is specialized care for children with potentially life-limiting conditions and for their families. It is complete care: physical, psychological, social and spiritual. It honors different personal, cultural and religious values, beliefs and practices.
The Initiative for Pediatric Palliative Care enhances family centered care for children living with life-threatening conditions through education, research and quality improvement. Currently, seven hospitals are developing exemplary quality improvement activities and serving as field test sites for the IPPC curriculum.
The Children's Program of San Diego Hospice, a collaborative effort of Children's and San Diego Hospice, is dedicated to providing compassionate care to infants, children and adolescents with life-threatening illnesses who wish to be cared for at home.
Footprints Program Health care providers from Cardinal Glennon, St. Louis University, and the community partner together to ensure that all children with life threatening illnesses live full lives until their journey ends. The FOOTPRINTS staff is committed to providing the highest quality of care for these children and their families, regardless of the site of care.
PACC (Program of All Inclusive Care for Children) of Children's Hospice International The CHI PACC® program provides a continuum of care for children and their families from the time that a child is diagnosed with a life-threatening condition, with hope for a cure, through the bereavement process, if cure is not attained.
ChIPPS -- Children's International Project on Palliative/Hospice Services works to concretely enhance the science and practice of pediatric hospice and palliative care, and to increase the availability of state of the art services to families.
American Academy of Pediatrics article outlining care guidelines for children with terminal conditions
National Resource Center on Diversity in End-of-Life Care is committed to improving the provision of and access to quality culturally appropriate care for all individuals with terminal illnesses.
ACCESS to End of Life Care: A Community Initiative dedicated to improving end-of-life care services for the San Francisco Bay Area's culturally and ethnically diverse populations. Created "Culturally Sensitive Assessment Tool" for use by social workers.
Harlem Palliative Care Network provides consultation, care-coordination and services to end of life patients and families in Harlem at no cost.
Healthy House Partners in Healing Project a multicultural community health center striving to overcome the barriers to health care for the vulnerable multiethnic populations in Merced County
California Coalition for Compassionate Care is a statewide partnership of over 50 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California.
Tuskegee University National Center for Bioethics in Research & Health Care The nation's first bioethics center is devoted to engaging the sciences, humanities, law and religious faiths in exploring moral issues involving research and medical treatment of African Americans and other underserved people. The Center provides leadership in cultural diversity and death and dying. (I stole this text)
Assuring Cultural Competence in Health Care
The Health and Human Services Office of Minority Health has published national standards on culturally and linguistically appropriate services (CLAS) in health care, available online.
State Initiatives in End of Life Care. There is another version of the Heart-to-Heart series which was designed for public policy-makers. Cassettes of these policy programs are available at the following link:
The Midwest Bioethics Center
Makes available Caring Conversations
http://www.midbio.org/workbook.pdf, a workbook to help start conversations, including advance health care planning and advance directive forms.
Finding Our Way: Living with Dying in America a national public education initiative focused on bringing practical information to the American public regarding end of life and its surrounding issues.
Promoting Excellence in End of Life Care (a Robert Wood Johnson program) Dedicated to long-term changes to improve health care for dying persons and their families through technical assistance to innovative demonstration projects addressing particular challenges to existing models of hospice and palliative care.
The Last Acts Campaign is designed to improve end-of-life care by a coalition of professional and consumer organizations. We believe in palliative care, focused on managing pain and making life better for individuals and families facing death. This site is for professionals and volunteers working to improve care of the dying.
Dying Well Dr. Ira Byock, long time palliative care physician and advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine, provides written resources and referrals to organizations, web sites and books to empower persons with life threatening illness and their families to live fully.
Growth House, Inc. provides an international gateway to resources for life-threatening illness and end of life care. Their primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration.
Promoting Excellence in End-of-Life Care Research innovative programs that have received grants and technical support to change the face of dying in America.
Americans for Better Care of the Dying Track changes in public policy, as well as reforms in pain management and support for family caregivers. (I stole this text)
Partnership for Caring: America's Voices for the Dying is a national, nonprofit organization devoted to raising consumer expectations for excellent end-of-life care and increasing demand for such care.
The National Alliance for Caregiving
Dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregiving.
The National Family Caregivers Association
Offers practical information and answers to frequently asked questions (FAQs), as well as “A Guide to Improving Doctor/Caregiver Communication.”