End-of-Life Care Resources
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Aging, Health and Healing
What Matters Now
What Matters Now provides free personal websites for people whose lives have been affected by serious illness or injury. Our intention is to help people be surrounded by the love and support of family and friends, and have space for reflection when facing a life-changing situation.
WHO Pain and Palliative Care Communications Program
Cancer Pain Release is the publication of the World Health Organization global communications program to improve cancer and HIV pain control and palliative care. Cancer Pain Release is dedicated to keeping a worldwide and multi-disciplinary audience in the health professions and government abreast of relevant information and developments in clinical medicine, education and policy.
Eldercare Locator
The Eldercare Locator is a free public service that connects older people and their families to valuable information on services and resources for senior citizens anywhere in the nation. The Eldercare Locator is a public service of the U.S. Administration on Aging administered by the National Association of Area Agencies on Aging.
CancerSource
The mission of CancerSource.com is to provide comprehensive, accurate, and personalized source of cancer information and services available.
Veterans Guide to Long-Term Care
This Guide to Long Term Care provides information about long term care options â home and community based, and residential care -- as well as listings of nursing homes for Veterans by state. The Shared Decision Making section provides valuable tools that help the older person, and the family support person, in making long term care plans and choices.
Mesothelioma Symptoms
MesotheliomaSymptoms.com is an extensive database of information and resources for patients and their families to better understand the symptoms of mesothelioma and the various aspects of diagnosis, prognosis, treatment, and many other factors of survival.
MySeniorCare
MySeniorCareâs mission is to support families and their aging loved ones during a highly stressful time as they search for information, resources and providers of senior care. We provide families with a wide range of support and credible information: 500+ articles reviewed by industry experts serving on our advisory board, a member community featuring message boards, user and expert authored blogs and a question and answer section we call 'Ask the Experts'. In addition to educational content, our Care Provider Directory empowers users to search, compare and directly contact prescreened home care, senior housing and hospice providers in their local area. Our search tool allows users to search by the specific type of care they require and the payment methods supported. Users can also read user reviews of each provider and call toll-free numbers to schedule a free consultation.
We Honor Veterans
NHPCOâs program designed to provide educational materials and resources for hospices that have committed to providing quality end-of-life care and services to Veterans.
Aging With Dignity
Our mission is to help you and your family plan and receive the care you deserve.<br><br> Something is terribly wrong: The majority of Americans want to die at home surrounded by family and friends, but most end up dying in the hospital or nursing home, cared for by strangers. Half of Americans die in pain that could have been treated. Sick people have come to fear losing their dignity or burdening their families more than they fear death. And this is all happening in a country that is meant to prize the rights of individuals and champion respect for personal wishes.<br> The non-profit Aging With Dignity was established because you and your family deserve better. We provide you with the practical information, advice and legal tools you need to ensure your wishes and those of your loved ones will be respected. By helping you improve your own quality of care, we can bring about dramatic change, one person at a time. <br><br> The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other living will and health agent forms because it looks to all of a person's needs: medical, personal, emotional and spiritual. Five Wishes also encourages discussing your wishes with your family and physician.
Phone: 888-5-WISHES (594-7437)
American Brain Tumor Association
The American Brain Tumor Association exists to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families.
Health Journeys
The company produces and distributes Health Journeys and other guided imagery and meditation tapes, CDs, books and software â in other words, holistic health tools that teach healing and wellness practices.
The HIV Resource Group
The Resource Group, the largest community based HIV/AIDS agency in the state of Texas, was founded as a 501(c)(3) non-profit agency to serve as the community based administrative agency for collaborative HIV/AIDS services funding in Houston.
Journey of Hearts: A Healing Place in CyberSpace
Site combines elements of medicine, psychiatry, poetry, prose and images to provide resources and support to those who have experienced loss, be it acute or long- standing.
Elder Care Online
Goal is to provide information, education and support to families caring for aging loved ones, especially those coping with Alzheimer's Disease and related dementias.
Medicare Rights Center
The Medicare Rights Center (MRC) is a national, not-for-profit, non-governmental organization that helps ensure that older adults and people with disabilities get good affordable health care.
U.S. Living Will Registry
U.S. Living Will Registry <br> The U.S. Living Will Registry electronically stores advance directives and makes them available to health care providers 24 hours/day via secure Internet or telephone-facsimile. The Registry stores ALL types of advance directives...living wills, health care proxies, health care power of attorney, as well as organ donor information. <br><br> U.S. Living Will Registry<br> 523 Westfield Ave., P.O. Box 2789<br> Westfield, NJ 07091-2789 <br> Phone: 800-LIV-WILL (800-548-9455) Fax: 908-654-1919
Phone: 800-LIV-WILL (800-548-9455)
The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society is a voluntary health organization dedicated to funding blood cancer research, education and patient services.
Cancer Resources
CancerResources is an on-line guide to cancer-related information, services and organizations. This is an insider's guide developed by survivors, caregivers, professionals and volunteers who have all had our lives touched by cancer.
Federal Government
VA Nationwide Palliative Care Network
The VA Palliative Care Network (PCN): Our primary mission is to create and foster a communication network for VA providers involved in hospice and palliative care. This VA Palliative Care Network consists of two major parts, a palliative care portal and an electronic bimonthly newsletter which in turn is linked to this palliative care portal The Palliative Care Network (PCN) is supported by the Offices of Geriatrics and Extended Care (GEC) and Academic Affiliations (OAA).
GovBenefits, U.S. Department of Labor
GovBenefits is a government Web site managed by the U.S Department of Labor, in partnership with nine other federal agencies. The site provides information about available government benefits they may be eligible to receive.
End of Life Special Interest Group
The End of Life Special Interest Group is sponsored by The National Institutes of Health , US Department of Health and Human Services (DHHS). We provide a means for all DHHS Agencies interested in end-of-life research to coordinate planning activities and to provide a means for communicating these DHHS activities to the broader community.
MEDLINEplus
MEDLINEplus is the free consumer health information resource from the National Library of Medicine, National Institutes of Health. It has been consistently rated number one or in the top three consumer health web sites in independent studies. Health professionals and consumers alike can depend on it for information that is authoritative and up to date. MEDLINEplus has extensive information from the National Institutes of Health and other trusted sources on over 500 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and dictionaries, health information in Spanish, extensive information on prescription and nonprescription drugs, current health news, and links to thousands of clinical trials.
Centers for Medicare & Medicaid Services
Welcome to the CMS, the federal agency that administers the Medicare, Medicaid and Child Health Programs.
Government Printing Office
U.S. Government Printing Office. Access to various documents for sale through the GPO
National Institutes of Health
Access to NIH information including National Library of Medicine resources.
U.S. National Library of Medicine
The National Library of Medicine - The world's largest biomedical library providing access to MEDLINE, other databases & Internet services, historical materials, research programs, training, special exhibits, and grants.
The White House
The Whitehouse home page. Access various information from the administration, Cabinet home pages, etc.
Academic
Lance Armstrong Foundation
The mission of the Lance Armstrong Foundation is to enhance the quality of survival of those diagnosed with, through, and beyond cancer. The LAF seeks to promote the optimal physical, psychological, and social recovery and care of cancer survivors and their loved ones.
Promoting Excellence in End-of-Life Care
Web site 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.
End of Life/Palliative Education Resource Center
The purpose of EPERC is to assist physicians and other educators involved in all aspects of physician end of life (EOL) education through: - Brief abstracts describing peer-reviewed instructional and evaluation materials - A list of core resources for EOL educators and opportunities for training, extramural funding, and pending conferences Submission of educational materials is encouraged for peer review and potential inclusion on the site.
Phone: 4144564353
AMDA Foundation
The AMDA Foundation, an independent not-for-profit organization, serves as the research arm of AMDA. The Foundation's mission is: "The AMDA Foundation advances excellence in patient care through research and its translation into long term care practice to support the members and mission of the American Medical Directors Association (AMDA)." The Foundation also takes an active role in outreach to residents, fellows and young career physicians with an interest in long term care. The Foundation sponsors the following programs and services: * The Long Term Care Research Network is a group of community-based medical directors that conduct outcomes research. All AMDA members are eligible and encouraged to join. * The AMDA Futures Program is an intensive learning experience designed to expose residents and fellows to the numerous career opportunities in long term care and support their attendance at the AMDA Annual Symposium. * The AMDA Foundation/Pfizer Quality Improvement Awards supports innovative projects in the areas of education, quality improvement, and research that will make a distinct impact on the quality of long term care.
Phone: (410) 992-3134
Association for Death Education and Counseling®
Association for Death Education and Counseling. The Association for Death Education and Counseling®, The Thanatology Association®, is one of the oldest interdisciplinary organizations in the field of dying, death and bereavement. Its nearly 2,000 members include a wide array of mental and medical health personnel, educators, clergy, funeral directors and volunteers. ADEC offers numerous educational opportunities through its annual conference, courses and workshops, its certification program, and resources.
Nursing Home End-of-Life Care
Susan Miller
National Palliative Care Research Center (NPCRC)
NPCRC is a national initiative committed to stimulating, developing, and funding palliative care research directed at improving care for patients with serious illness and their families.
Phone: 212.241.5388
The Education on Palliative and End-of-Life Care (EPEC) Project
The mission of The EPEC Project is to increase the core skills of palliative care for all members of the interdisciplinary team. At the heart of the Project is the EPEC Curriculum. The EPEC Team invites members of the health care team to become EPEC Trainers. In this role, you will join a team of over 1,600 existing EPEC Trainers who are changing the experience of illness, dying, and bereavement for patients, families, and health care providers.
Phone: 312-503-3732
Population-based Palliative Care Research Network
The Population-based Palliative Care Research Network (PoPCRN), based at the University of Colorado Health Sciences Center in Denver, Colorado as a means for conducting on-going studies of care at the end of life. Their Web site contain detailed information about their research studies, newsletters, and sites that support their research.
American Society of Clinical Oncology
The American Society of Clinical Oncology (ASCO) is the leading professional organization representing physicians who treat people with cancer.
Health Gate
Health Gate is a provider of medical, health, and wellness information on the World Wide Web. Health Gate offers an extensive constantly enlarging array of content for physicians, medical researchers, and consumers that is easy and inexpensive to use while maintaining the highest standards of academic and scientific integrity.
Center to Advance Palliative Care
The Center to Advance Palliative Care (CAPC) is a resource to hospitals and other healthcare settings interested in developing palliative care programs. CAPC is a national initiative supported by The Robert Wood Johnson Foundation with direction and technical assistance provided by Mount Sinai School of Medicine.
End-of-Life Nursing Education Consortium
The End-of-Life Nursing Education Consortium (ELNEC) offers courses for undergraduate faculty, clinical end-of-life care educators and other continuing education/staff development educators. The ELNEC project, a comprehensive, national education program to improve end-of-life care by nurses, 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.
Association of American Medical Colleges
The Association of American Medical Colleges has as its purpose the improvement of the nation's health through the advancement of medical schools and teaching hospitals. Web site includes listing of major medical conferences.
Other
American Health Quality Association
The American Health Quality Association represents Quality Improvement organizations (QIOs) and professionals working to improve the quality of health care in communities across America.
American Alliance of Cancer Pain Initiatives
The American Alliance of Cancer Pain Initiatives is dedicated to promoting cancer pain relief nationwide by supporting the efforts of State Cancer Pain Initiatives. Cancer Pain Initiatives are voluntary, grassroots organizations composed of nurses, physicians, pharmacists, social workers, psychologists, and representatives of clergy, higher education, and government. Initiatives and their participants provide education and advocacy to healthcare providers, cancer patients and their families.
The Anatomy Gifts Registry
AGR's donor program and no-cost cremation service has been an extremely valuable resource for Social Workers, Chaplains, Hospice Staff and the grieving families they serve. National, 24 hour hotline. Families get closure within weeks, not years! Thank you.
Phone: 800-300-5433
Gift From Within- PTSD Resources for Survivors & Caregivers
Gift From WIthin is also listed on the Deployment Health Clinical Center website and other websites for those either suffering from trauma and caregiving. Gift From Within, an international nonprofit organization is dedicated to those who suffer post-traumatic stress disorder (PTSD), those at risk for PTSD, and those who care for traumatized individuals. Educational materials include videotapes, books and articles for both clinicians and those experiencing PTSD. Gift From Within was founded by Frank Ochberg, M.D., an expert in PTSD. Dr. Ochberg is the former Associate Director of the National Institute of Mental Health and one of the team members who wrote the medical definition for Post Traumatic Stress Disorder. He was the editor of the first treatment text in America for PTSD. The Gateway to PTSD Information (www.ptsdinfo.org) is a gateway to four nonprofit sites that offer PTSD information and resources. Four national and international organizations are here to help, with articles, references, web-links, mini-courses, 800 phone access and e-mail pen-pal resources. This site is listed on the U.S. Department of Health and Human Services website, under their mental health disorders topic. Gift From Within- PTSD Resources for Survivors and Caregivers l6 Cobb Hill Road Camden, ME 04843 USA 207 236-8858 ph 207 236-2818 fax
Phone: 207-236-8858
Grief and Healing
Run to Remember
Run to Remember provides an opportunity for you to support hospice care and at the same time honor the memory of a loved one. Through the process of training for a marathon or mini-marathon, Run to Remember will help you to train appropriately, create a legacy in honor of your loved one, and provide step by step assistance in raising funds for The National Hospice Foundation.
The Healthcare Chaplaincy
The HealthCare Chaplaincy is a multifaith community of professionals committed to the advancement of pastoral care, education and research. We are dedicated to the spiritual care of all persons who are suffering in body, mind and spirit.
Cancer Family Care
Cancer Family Care provides counseling and understanding to cancer patients and their families to help them cope with the devastating emotional impact of disease and loss serving the residents of Greater Cincinnati and Northern Kentucky.
Growth House, Inc.
A non-profit organization working with grief, bereavement, hospice, and end-of-life issues.
Death & Dying - Where Life Surrounds Death
Our mission at Death and Dying is to provide you with comfort, support, and education about issues surrounding death at times of apprehension, confusion, and sorrow as well as at times of understanding, growth, and serenity.
Allied Members
Center for Advanced Illness Coordinated Care
Presents healthcare providers with a care coordination model for improving end-of-life care and offers patients and their loved ones guidance and support for dealing with advanced illness and death.
Faith in Action
A National Program of the Robert Wood Johnson Foundation, Faith in Action seeks to combine the resources of local faith community and community organizations, such as hospices, to serve their neighbors. Sponsored by the Robert Wood Johnson Foundation, Faith in Action offers start-up grants of $35,000 to help communities organize new caregiver coalitions. Hospices are eligible to apply. In addition to grant funding, Faith in Action supports emerging coalitions with technical assistance for coalition building, board development, volunteer recruitment and training, communications, fundraising, strategic planning and program management.
Innovations in End-of-Life Care
For health care professionals aiming to improve palliative care in their institutional settings, Innovations is an online peer-reviewed journal which also has a standing print presence in the Journal of Palliative Medicine. Funded by Last Acts and the Robert Wood Johnson Foundation, Innovation's primary goal is to disseminate best practices and support institutional change by a careful examination of the process of implementing successful programs and by offering international and cross-cultural perspectives in each thematic issue.
American Hospice Foundation
The American Hospice Foundation provides training and education programs in the workplace, in public and private schools, and in the health care system, with the goal of improving services for grieving and dying Americans of all ages.
American Academy of Hospice & Palliative Medicine
For more than 25 years, the Academy has dedicated itself to expanding access of patients and families to high quality palliative care, and advancing the discipline of Hospice and Palliative Medicine, through professional education and training, development of a specialist workforce, support for clinical practice standards, research and public policy. Membership is available to physicians specializing in hospice and palliative medicine, nurses and other health care providers who are committed to improving the quality of life of patients and families facing serious illness.
Phone: 847-375-4712
Hospice Foundation of America
Welcome to the home page of Hospice Foundation of America. Whether you are looking for general information about hospice, or specific information on the Foundation, we hope you'll find our page informative, interesting and helpful.
Hospice and Palliative Nurses Association
The purpose of the HNPA 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
International Resources
International Association of Hospice and Palliative Care
1515 Holcombe Blvd, Box 112 C/O MD Anderson Cancer Center Houston, TX 77030-4009 Our mission is to increase the availability and access to high quality hospice and palliative care for patients and families throughout the world. We do this by promoting communication, facilitating and providing education, and by becoming an information resource for patients, professionals, health care providers and policy makers around the world. Our vision is to help alleviate the physical and psychosocial suffering associated with progressive, incurable illness throughout the world. IAHPC is a not for profit organization. Where applicable, donations to IAHPC from individuals, companies or sponsors are tax deductible. We have an international directory on our web site.
Liliana DeLima
Phone: (713) 339-9041
Saint Christopher's Hospice
51-59 Lawrie Park Rd Sydenham London, SE26 6DZ UNITED KINGDOM The hospice has 62 beds and provides Home Care, Extended Home Nursing Service, Day Hospice / Centre, a Bereavement Service plus support for other life threatening illnesses.
Phone: 011-44-208-778-9252
International Observatory on End of Life Care
A team of social scientists and clinicians based at Lancaster University (UK) collaborates with colleagues all around the world in an effort to provide research evidence to impact the global development of hospice and palliative care. The Observatory encourages interested parties to get involved with us â through research collaboration, programmes of study, volunteering or grant support.
Phone: +44 1524 592513
Help the Hospices
Hospice House 34-44 Britannia St London, WC1X 9JG UNITED KINGDOM Help the Hospices is the national charity for the hospice movement, founded by the Duchess of Norfolk. They support hospices in their vital work on the frontline of caring for people who face the end of life and caring for those who love them. We have a search feature for hospices in Europe. <a href="http://www.hospiceinformation.info/findahospice.asp">Click here to search for an international hospice.</a>
David Praill
Phone: 44 (0) 20 7520 8200
Children and Family Support
National Family Caregivers Association
NFCA is a grass roots organization created to educate, support, and empower the millions of Americans who care for chronically ill, aged or disabled loved ones. NFCA reaches across the boundaries of different diagnoses, different relationships and different life stages to address the needs and concerns of all family caregivers.
Phone: 800/896-3650
National Coalition for Cancer Survivorship
The National Coalition for Cancer Survivorship (NCCS) is a grassroots network of individuals and organizations working on behalf of people with all types of cancer.
The Dougy Center
The mission of The Dougy Center is to provide to families in Portland, Oregon and the surrounding region loving support in a safe place where children, teens, and their families who are grieving a death can share their experience as they move through their healing process. Through our National Center for Grieving Children and Families, we also provide support and training locally, nationally and internationally to individuals and organizations seeking to assist children and teens in grief.
Volunteers of America
Volunteers of America, one of the nation's oldest, largest, and most comprehensive nonprofit human service organizations, helps over one million Americans every year.
Children's Hospice International
In 1983, Children's Hospice International (CHI) was founded as a non-profit organization to provide a network of support and care for children with life-threatening conditions and their families.
