Links
End-of-Life Care
American Academy of Hospice and Palliative Medicine
The only organization in the U.S for physicians dedicated to the advancement of hospice/palliative medicine, its practice, research, and education. The AAHPM is dedicated to excellence in palliative medicine and 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. www.aahpm.org/
Americans for Better Care of the Dying
A non-profit organization dedicated to social, professional, and policy reform to improve care for persons with serious illness and their families. Includes Agitator’s Guide: 12 steps to get your community talking about dying. www.abcd-caring.org
American Pain Society
This site offers an online directory of pain treatment facilities where you may search for a pain specialist to consult regarding your individual situation. To further meet the information needs of the general public and especially people in pain, APS has assisted in launching and developing the American Pain Foundation, a non-profit information resource and patient advocacy organization for serving people with pain. The Foundation’s mission is to improve the quality of life of people with pain by providing
Practical information for patients, raising public awareness and understanding of pain, and advocating against barriers to effective treatment. www.ampainsoc.org/
Association for Death Education and Counseling (ADEC)
ADEC is one of the oldest interdisciplinary organizations in the field of dying, death and bereavement. This international professional organization is dedicated to promoting excellence in death education, care of the dying, and bereavement counseling and support. Based on quality research and theory, the Association provides information, support, and resources to its multicultural, multidisciplinary membership, and, through it, to the public. www.adec.org/
Caregiving.com
Provides information about health and wellness of the family or friend who is providing care, bill management, homecare assistance, community support, and free messaging to others who are caring for an ill loved one. www.caregiving.com
Center for the Advancement of Palliative Care (CAPC)
A resource to hospitals and health systems interested in developing palliative care programs. www.capc.org/
End-of-Life: Exploring Death in America
A series from National Public Radio including reference lists, broadcast transcripts, and Real Audio clips. www.npr.org/
End of Life Nursing Education Consortium Project (ELNEC)
A comprehensive, national education program to improve end-of-life care by nurses. It is funded by a major grant from the Robert Wood Johnson Foundation. Primary project goals are to develop a core of expert nursing educators and to coordinate national nursing education efforts in end-of-life care.
End-of-Life Physician Education Resource Center (EPERC)
A central repository for educational materials and information about end-of-life (EOL) issues. The purpose of EPERC is to assist physician educators and others in locating high-quality, peer-reviewed training materials. www.eperc.mcw.edu/
EPEC: Education for Physicians in End-of-Life Care
Provides teaching modules, handouts, PowerPoint slides and facilitator’s guides designed to educate all physicians on the essential clinical competencies required to provide quality end-of-life care. The EPEC Curriculum has been designed with input from nationally respected experts in the field and feedback from participants of early training conferences. www.epec.net/EPEC/webpages/resources
Growth House: Guide to Death, Dying Grief, Bereavement and End-of-Life Resources
This site is an award-winning gateway to resources related to life-threatening illness and end-of-life care. The primary mission of the organization is to improve the quality of compassionate care for people who are dying through public education and global
Professional collaboration. The site offers valuable materials for professionals and laypeople alike. www.growthhouse.org
Harvard Medical School Center for Palliative Care
Fosters collaboration among HMS-affiliated institutions involved in education, research and clinical activities in end-of-life care. The Center is a local and national resource for the emerging field of palliative care. www.hms.harvard.edu/cdi/pallcare/
Hospice and Palliative Care Federation of Massachusetts
A non-profit organization dedicated to promoting hospice care throughout the Commonwealth through leadership, education and advocacy; to providing technical assistance, support and information to hospice providers; to increasing access to hospice services; and to acting as a clearinghouse on issues relating to care of terminally ill people. The site includes a hospice locator. www.hospicefed.org/
800-962-2973
Hospice and Palliative Care Nurses Association
This organization’s purpose is to exchange information, experiences, and ideas; to promote understanding of the specialties of hospice and palliative nursing; and to study and promote hospice and palliative nursing research. www.hpna.org/
Hospice Foundation of America (HFA)
A non-profit that promotes hospice care and works to educate professionals and the families they serve in issues relating to caregiving, terminal illness, loss and bereavement. www.hospicefoundation.org 305-538-9272
Last Acts
An on-line community, funded by the Robert Wood Johnson Foundation, dedicated to improving end-of-life care through the sharing of ideas and solution by professional caregivers, educators, and consumers. www.lastacts.org/
Massachusetts Coalition for Compassionate Care
A coalition of individuals and organizations who seek to improve end-of-life care in Massachusetts. Links to other resources in Massachusetts provided. www.massccc.com/ 781-848-0763
Massachusetts Medical Society
Web site on health care proxy, advance directives, forms, discussion guide, and links to others end-of-life resources. www.healthcareproxy.org/
National Center for Death Education, Mt. Ida College (Newton, MA)
The NCDE is an educational center dedicated to promoting knowledge and understanding in the field of Thanatology. NCDE aims to help people enhance their own awareness of death as well as provide them with resources to support the dying and grieving of all ages. NCDE provides ongoing learning opportunities for professional caregivers and others designed for acquiring and maintaining a current knowledge base, as well as developing creative and artful skills for providing care associated with end-of-life, bereavement and loss. www.mountida.edu 617-928-4500
National Hospice and Palliative Care Organization (NHPCO)
The largest non-profit membership organization representing hospice and palliative care programs and professionals in the U.S. The organization is committed to improving end-of-life care for people dying in America and care for their loved ones. www.nhpco.org/templates/1/homepage.cfm
On Our Own Terms – Moyers on Dying
Experts’ articles on end-of-life, a guide to financial planning at the end-of-life, resources, audio and video clips, and a chat room with Bill Moyers. www.pbs.org/wnet/onourownterms/index.html
Partnership for Caring
A resource for living wills, medical powers of attorney, etc. www.partnershipforcaring.org/ 800-989-9455
Resource Guide for End-of-Life Services in Massachusetts
This guide was prepared by the Massachusetts End-of-Life Commission and provides a comprehensive listing of resources for end-of-life care and bereavement in the Commonwealth. Resources can be search by service provider, program, agency name, region, or by city. www.endoflifecommission.org
The National Consensus Project for Quality Palliative Care (NCP)
The purpose of the NCP is to arrive at voluntary consensus standards describing the scope and characteristics of both specialist and primary practice setting palliative care services in the U.S. www.nationalconsensusproject.org
The Project on Death in America
The mission of The Project 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. www.soros.org/initiatives/pdia
