Resources

End-Of-Life Care Resources
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.

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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

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Pallimed
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.

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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.

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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.

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American Society of Clinical Oncology

The American Society of Clinical Oncology (ASCO) is the leading professional organization representing physicians who treat people with cancer.

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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

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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.

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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.

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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

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Aging, Health and Healing
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.

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We Honor Veterans

NHPCO’s program designed to provide educational materials and resources for hospices that have committed to providing quality end-of-life care and services to Veterans.

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MySeniorCare

MySeniorCare’s 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.

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CancerSource

The mission of CancerSource.com is to provide comprehensive, accurate, and personalized source of cancer information and services available.

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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.

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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.

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Cancer Resources

Cancer Resources 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.

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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.

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The Leukemia & Lymphoma Society

The Lymphoma Society is a voluntary health organization dedicated to funding blood cancer research, education and patient services.

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Veterans Guide to Long-Term Care

This Guide to Long Term Care provides information about long term care options 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.

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Health Journeys

The company produces and distributes Health Journeys and other guided imagery and meditation tapes, CDs, books and software; in other words, holistic health tools that teach healing and wellness practices.

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Aging with Dignity

Our mission is to help you and your family plan and receive the care you deserve. 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. 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. 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)

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U.S. Living Will Registry

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. U.S. Living Will Registry 523 Westfield Ave., P.O. Box 2789 Westfield, NJ 07091-2789 Phone: 800-LIV-WILL (800-548-9455) Fax: 908-654-1919

Phone: 800-LIV-WILL (800-548-9455)

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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. What Matters Now is offered by The Samvara Project, a 501(c) (3) nonprofit organization.

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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.

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Allied Members
National Association of Social Workers

NASW is the largest membership organization of professional social workers in the world, with 132,000 members. NASW works to enhance the professional growth and development of its members, to create and maintain professional standards, and to advance sound social policies. NASW has developed a specific section of its website that provides relevant tools, information, and resources for social workers, who constitute one of four core disciplines in hospice and palliative care teams. NASW maintains a consumer Web site (www.helpstartshere.org), which includes a searchable database of social workers and a wealth of information on topics such as advance care planning, living with illness, pain, Alzheimer’s disease and other dementias, family caregiving, grief, and death and dying.

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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

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Center for Advanced Illness Coordinated Care

Presents healthcare providers with care coordination model for improving end-of-life care and offer patients and their loved ones guidance and support for dealing with advanced illness and death.

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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

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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.

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Children and Family Support
Volunteers of America

Volunteers of America, one of the nation’s oldest, largest, and most comprehensive nonprofit human service organizations, help over one million Americans every year.

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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.

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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

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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.

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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.

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Federal Government
The White House

The Whitehouse home page. Access various information from the administration, Cabinet home pages, etc.

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U.S. House of Representatives

Access to representatives home pages and congressional documents.

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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.

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Food and Drug Administration

The Food and Drug Administration’s home page.

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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.

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Health and Human Services

The U.S. Department of Health and Human Services home page.

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Centers for Medicare & Medicaid Services

Welcome to the CMS, the federal agency that administers the Medicare, Medicaid and Child Health Programs.

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Government Printing Office

U.S. Government Printing Office. Access to various documents for sale through the GPO

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Library of Congress
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.

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National Institutes of Health

Access to NIH information including National Library of Medicine resources.

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Social Security Administration

Information on Medicare and other SSA benefits.

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Grief, Healing, Spirituality
The Center for Jewish End of Life Care

The Center is dedicated to facilitating conversations about the physical, emotional and spiritual needs of Jewish people affected by any advanced and terminal illness.

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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.

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Growth House, Inc.

A non-profit organization working with grief, bereavement, hospice, and end-of-life issues.

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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.

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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.

Phone: 713-339-9041

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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 phone 207 236-2818 fax Phone: 207-236-8858

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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.

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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!

Phone: 800-300-5433

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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.

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