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WEB DIRECTORY COMMISSION MEMBERS
END OF LIFE CARE RESOURCES American Academy of Hospice and Palliative Medicine American Association of Colleges of Nursing: End-of-Life
Nursing Education Consortium (ELNEC) Project Providing resources and curriculum to educate nurses in end of life care. Americans for Better Care of the Dying Dedicated to ensuring that all Americans can count on good end-of-life care, ABCD focuses its efforts on improved pain management, financial reimbursement systems, continuity of care, support for family caregivers, public policy and other fundamental reforms. Approaching Death: Improving Care at the End of Life Barbara Ziegler Palliative Care Education Program of
Memorial Sloan-Kettering Cancer Center Caring Conversations: Making Your Wishes Known for
End-of-Life Care (A Program offered by the Midwest Bioethics Center) Program components include a workbook on end-of-life issues, a resource booklet of consumer education about healthcare and end-of-life decisions, an adult study group guide and video, and other resources. Dying Well Provides written resources and referrals to organizations, web sites, and books to empower persons with life-threatening illness and their families to live fully. End of Life Physician Education Resource Network EPERC is a program sponsored by Medical College of Wisconsin for physicians and physician educators regarding end of life issues. The site provides peer-reviewed training materials and links to other similar sites. Ethical Wills Growth House, Inc Provides comprehensive resources about life-threatening and terminal illnesses, hospice and home care, pain management, palliative care, death and bereavement. Hospice Foundation of America Provides access to videotapes, books, newsletters and brochures about end-of-life care and grief issues. The International Work Group on Death, Dying, and
Bereavement Last Acts Campaign Provides information on end-of-life care and new legislation. Also offers on-line discussion groups and many helpful links to related sites. MedicAlert Foundation Provides DNR emblems and advance directive repository services. Medical Directive Worksheets End-of-life care worksheets are available to order that can help people determine the treatment they want if they become gravely ill and unable to speak for themselves. NPR Exploring Death in America National Hospice and Palliative Care Organization NHPCO is a professional organization that provides information on hospice programs available in your area, and general information about hospice services. On Our Own Terms: Moyers on Dying Thirteen/WNET New York Provides information and resources about decision-making and care at the end of life based on the Public Broadcasting Service Bill Moyers series, On Our Own Terms. Partnership for Caring, Inc. (Previously Choices in Dying) Provides a 24-hour hotline offering up to date information about advance directive laws for individual states and general information about end-of-life issues and decision making. Also provides individual states’ legally recognized advance directive document. Project on Death in America: Soros Foundation Promoting Excellence in End-of-life Care Located at the University of Montana, this RWJF funded program sponsors clinician and researcher peer workgroups and directs long-term end of life care development projects. These projects focus on special populations of patients, particularly those with terminal diseases and illnesses. It challenges clinical settings and reaches out to underserved Native American community. Toolkit of Instruments to Measure End of Life Care U.S. Living Will Registry A national free service that will register and store an advance directive on a computer database that can then be faxed directly to hospitals if needed. Assistance for CareGivers and In-Home Services RESOURCES Caregivers Survival Resources Provides information about disease-related support groups and general resources for caregivers. Children of Aging Parents (CAPS) / Careguide CAPS has a national mission to provide the 22.4 million family caregivers with reliable information and referrals, a network of support groups, and publications and programs that promote public awareness of the value and the needs of caregivers. CAPS provides phone numbers and names of nursing homes, retirement communities, elderlaw attorneys, day care centers, medical in-home services, respite care, assisted living centers, state and county agencies and more. CAPS also writes, collects, and disseminates fact sheets on various topics. Meals-on-Wheels Association of America Provides information about the Meals-on-Wheels program in your area. National Association for Home Care National Federation of Interfaith Volunteer Caregivers Will find a volunteer to help with supportive services to the frail elderly and their caregivers. The Well Spouse Foundation The Well Spouse Foundation was formed to give emotional support, raise consciousness about, and advocate for the spouses and children of the chronically ill and/or disabled. Elder Care Resources Aging with Dignity Provides the health care directive document "Five Wishes," which is legal in 36 states American Society on Aging (ASA) ASA is a professional society that provides educational programs, publications and information, and training resources. Eldercare Locator A nationwide directory assistance service designed to help older persons and caregivers locate local support services for aging Americans, including information about how to contact your State Agency on Aging. It is a public service of the Administration on Aging and the U.S. Department of Health and Human Services and is administered by the National Association of Area Agencies on Aging and the National Association of State Units on Aging. National Aging Information Center National Council on Aging National Institute on Aging The National Institute on Aging (NIA), one of the 25 institutes and centers of the National Institutes of Health, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. Resource Directory for Older People Provides an online directory compiled by the National Institute on Aging (NIA) and the Administration on Aging (AoA) or the elderly, caregivers, health and legal professionals, social service providers, and others. Senior Scape Elderlinks Provides a regularly updated list of elder care resources. The website is a cooperative effort of the National Institute on Aging (NIA) and the Administration on Aging (AoA). Grief and Loss Resources Association for Death Education and Counseling A Professional Organization that provides educational tools to increas awareness and acceptance of the grieving process. Beyond Indigo (formerly Death and Dying) This site offers grief support, message boards, memorial postings, story archives, and a wide array of information on how to cope with grief. Grief and Loss Resource Centre This site provides a comprehensive list of links to bereavement related web pages as well as support and advice. National Cancer Institute: Grief, Loss and Bereavement A resource provided be the National Cancer Institute specifically for cancer related emotional hardships. Cross-Cultural Health RESOURCES Agape/Community Care A Baylor University sponsored initiative providing cultural resources for the health care community. Links to information about Asian and Latino health practices, refugee health issues are available through this site. Community and Cross-Cultural Health A specialty program at the School of Nursing of the University of California San Francisco focusing on the advancement of healthcare for vulnerable communities. Cross Cultural Healthcare program In attempts to bridge the gap between health care providers, and increasing ethnic and linguistic diversity in the community CCHCP offers a broad range of services. Available on the Web site are books and information resources, training programs, research initiatives and translation/interpretation services. Diversity RX This organization offers medical interpretation resources, legal advice and policy directives. Through programs aimed at reducing the impact of language barriers, Diversity RX works toward extending quality healthcare across diverse minority, immigrant and ethnic communities. Pediatric RESOURCES The American Academy of Pediatrics The AAP website has news and information on most childhood health issues from immunization to cancer treatment. The American Cancer Society The ACS has a wonderful Children’s Resource Center that has very helpful information on cancer in children. The Children’s Hospice International CHI is a marvelous website. They have a child-friendly interactive section as well as a part dedicated to publications and documentation for parents and health care providers. Pain Management for Children with Cancer PedsChat The International Pediatric Chat website allows professionals from all over the globe to come together to discuss problems, issues and concerns about pediatric health care. Starbright World The website for the Starbright World is an interactive website for children and teens who are facing serious illness. It includes a multi-media educational tool to help children understand their illnesses.
Journals
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