End of Life: Palliative Care
Palliative care, Hospice, Grief and Bereavement.
Resources for Patients and Families facing End of Life Issues.
AgeNet, LLC - A Web site for older adults and their caregivers presented in a newsletter format. Along with he
information it provides, the Web site gives you the opportunity to ask health professionals (including a pharmacist and an occupational therapist) questions. One of the most notable features is a section containing reviews of drugs for health problems ranging from Alzheimer's Disease to stroke.
Aging Parents and Elder Care - Articles, comprehensive checklists, and links to key resources. Designed to make it easier for family
caregivers to quickly find the information they need and avoid overlooking something important in the care of their loved one.
Aging with Dignity - Aging with Dignity is an organization that advocates for the needs of elderly Americans and their caregivers. The Web site provides an overview of the organization's publications and projects.
ALS Association - Information and educational materials about ALS (Lou Gehrig's Disease). Provide referrals to physicians, support groups, and drug trials.
Alzheimer's Disease and Related Disorders Association - Information on the disease and referrals to over 200 local
association chapters for specific services.
Alzheimer's Disease Research (AHAF) - American Health Assistance Foundation (AHAF) funds
scientific research on age-related diseases, educates the public about these diseases, and provides financial assistance to Alzheimer's disease patients and
their caregivers.
American Academy of Hospice and Palliative Medicine (AAHPM)
American Art Therapy Association - Extensive listings of art therapy publications, subscription details for the
Journal of the American Art Therapy Association, information about art therapy legislation, and news stories.
American Association of Pastoral Counselors - Pastoral Counselors are certified mental health professionals with
in-depth training in spiritual matters who can help counsel dying patients and their families and friends.
American Association of Retired Persons (AARP) - Wide range of services including counseling, advocacy, benefits, and
entitlement information; activities and assistance to people who are homebound.
American Board of Hospice and Palliative Medicine (ABHPM)
American Chronic Pain Association - Peer support and coping skills to anyone with chronic pain.
Americans for Better Care of the Dying (ABCD) - The Americans for Better Care of the Dying Web site is dedicated
to advocacy for better support and care systems for the seriously ill. It contains news updates, a resource directory and information on events.
American Hospice Foundation - The foundation advances the hospice concept of care and promotes hospices that
seek to meet growing and complex needs.
The American Institute of Life-Threatening Illnesses - The American Institute of Life-Threatening Illnesses is
based in the Columbia-Presbyterian Medical Center of New York City. Their Web site provides information on a wide variety of diseases, research, policy
initiatives, and quality-of-life issues.
American Music Therapy Association - This organization offers information on career opportunities and academic
programs for music therapists, a list of music therapy listservs, professional publications, and details on how to find a music therapist near you.
American Pain Foundation - An information, education, and advocacy organization serving people with pain.
They will accept telephone calls from individuals with specific pain issues. Leave a message on the answering service and they will call back.
American Society of Aging - Education and training resources for professionals working in the field of aging.
American Society of Law, Medicine and Ethics - Provides you with the best educational information at the nexus of law,
medicine, and ethics.
ARCH National Respite Network and Resource Center - Supports service providers and families through training,
technical assistance, evaluation, and research. The ARCH National Respite Network and Resource Center is funded in part by the U.S. Department of Health and
Human Services, Administration for Children, Youth and Families, Office of Child Abuse and Neglect.
Art Therapy on the Web - Contains information on art therapy, a discussion link, and interesting articles
about art therapy.
Before I Die - The Before I Die Web site was the online companion guide to the 1997 PBS broadcast
"Before I Die: Medical Care and Personal Choices." It uses a narrative format to treat complex end-of-life medical, ethical, and social issues.
C.E. Koop Institute: Healing and the Arts - This program at Dartmouth College's Medical School
explores the relationship between the creative arts and healing with projects ranging from an online gallery of artwork to poetry and prose readings.
Cancer Care, Inc. - Provides support groups, educational programs and workshops for cancer patients and their
families. They operate a national referral service, and counselors on staff provide assistance to callers. Cancer Care also publishes Helping Hand, a useful
resource guide for cancer patients and others. Includes resource information for caregivers.
Cancer Information Services (National Cancer Institute) - Answers questions related to cancer and cancer treatment.
Provides referrals to hospice, home care and support groups.
Cancer On Line - Excellent resources for patients and their loved one related to cancer and pain management.
Caregiver.com - Contains back issues of Today's Caregiver Magazine, information on the "Sharing Wisdom
Caregivers Conferences" and a discussion forum.
Caregiver Survival Resources - Resources and a wealth of information, both general and specific. There are
links to other health-related web sites, information on books, and disease-specific resources.
Caregiving.com - Resources and support for family caregivers.
Careguide.com - Resources about aging and elder care. Resource topics range from support with daily living,
financial and legal information as well as community support.
Carethere.com - Resources to help caregivers assess their needs; find medical, financial and legal information;
connect with family and other caregivers; and locate local services and products.
Center for Advanced Illness Coordinated Care (CAICC) - Provides 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.
 Center to Advance Palliative Care
- The Center to Advance Palliative Care (CCAPC) is dedicated to increasing the availability of quality palliative care services in hospitals and other health
care settings for people with life-threatening illnesses, their families, and caregivers. A national initiative supported by The Robert Wood Johnson
Foundation, with direction and technical assistance provided by the Mount Sinai School of Medicine (NY), CAPC provides health care professionals with the
tools, training, and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings.
Through its comprehensive web site, regular management training seminars, audio conferences, and Palliative Care Leadership Center (PCLC) initiative, CAPC
provides a core curriculum for programs in the planning or early stages of development. CAPC also provides information on palliative care to hospitals, clinicians, policymakers, payers, and
researchers to improve the care provided to Americans with advanced illness.
Community-State
Partnerships to Improve End-of-Life Care - Community-State Partnerships to Improve End-of-Life Care is dedicated to advocating for the dying. The Web
site is directed towards anyone concerned with end-of-life issues and provides useful information including state resources.
The Compassionate Friends - The Compassionate Friends provides practical information and emotional
guidance for families who are grieving the death of a child.
Death: An Inquiry Into Man's Mortal Weakness - This well-designed Web site for the
ThinkQuest Internet challenge is divided into three sections: causes of death, coping with death, and following death. The easy-to-browse format also
includes tips for teachers.
Dying Well - The Dying Well Web site, created by Dr. Ira Byock, past president of the American Academy of Hospice
and Palliative Medicine, contains a wide range of resources on death and life-threatening illness, plus articles by Dr. Byock and information on his books.
Education for Physicians on End-of-Life Care (EPEC) - Robert Wood Johnson
Foundation-funded project to educate physicians on the essential clinical competencies in end-of-life care. Includes resource guide, information on
obtaining EPEC curriculum and list of EPEC conference attendees.
The End of Life Exploring Death in America - A comprehensive Web site on death in the U.S. for people
with life-threatening diseases or those who are terminally ill. The transcripts section includes links for those that wish to listen to or read specific
topics and stories relating to death or dying.
End of Life Nursing Education Consortium (ELNEC) - Robert Wood Johnson Foundation-funded project
to educate nurses about End of Life Care.
End of Life Physician Education Resource Center (EPERC) - An initiative of the Medical College of Wisconsin and
the Robert Wood Johnson Foundation, EPERC provides information to physician educators about end-of-life training materials, publications, and conferences.
The Web site requires registration for access.
Ethical Wills: Preserving Your Legacy of Values - Ethical wills are a way to share your values, beliefs, life
lessons, hopes for the future, love, and forgiveness with your family and community. This site has information on creating an ethical will.
Funeral and Memorial Societies of America (FAMSA): Funeral Consumers Alliance - Information about after death
planning. A consumer rights organization providing a referral service, information on industry practices and the law, as well as other useful information.
Provides help in planning a dignified and affordable funeral. Offers referrals to memorial service providers nationwide.
Genetic Alliance - An international coalition of individuals, professionals and genetic support
organizations working together to enhance the lives of everyone impacted by genetic conditions. Information on support groups.
GriefLink - An easy-to-use Web site developed by the National Association for Loss and Grief in
Australia. Some of the information is specific to Australia, but most of the information is relevant to anyone who has experienced the loss of a loved one
or who is supporting someone else in grief.
GriefNet - E-mail support groups that provide information and online discussion on unusual end-of-life topics such
as homicide, pet loss, prison bereavement and children-in-grief.
Growth House, Inc. Resource Directory - Growth House is a San Francisco-based non-profit organization that
offers a broad range of online information on end-of-life care: from hospice handbooks to sites that give tips on explaining death to children. The Web site
also includes an Inter-Institutional Collaborating Network (IICN) that joins major end-of-life care organizations from the United States, Canada, the United
Kingdom, and Spain in an online community.
Hospice and Palliative Care: Questions and Answers
Hospice Foundation of America - Not-for-profit organization that provides leadership in the development
and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information, HFA assists
those who cope either personally or professionally with terminal illness, death, and the process of grief
Hospice Net - Information for patients and families facing life-threatening illness.
Innovations in End-of-Life Care - International online journal and forum on best practices to improve and
manage a dying patient's quality of life and care.
Journey of Hearts: A Healing Place in CyberSpace - Inspirational Web site designed to broaden the
understanding of the death experience as well as spiritually uplift those have had life altering experiences.
Last Acts - Last Acts, part of a national campaign by the Robert Wood Johnson Foundation to improve end-of-life
care, offers an extensive resource directory, information on palliative care, daily journal articles, guides to coping with grief and bereavement, news, an
electronic newsletter, and campaign updates.
Lance Armstrong Foundation - The mission of the Lance Armstrong Foundation is to enhance the quality of survival of
those diagnosed with cancer. The LAF seeks to promote the optimal physical, psychological, and social recovery and care of cancer survivors and their loved
ones.
Mayday Pain Project - A guide and index of internet information to those in pain. This site is targeted to
care givers, family and friends of those suffering from pain.
Medical Humanities - This Web site, run by the New York University School of
Medicine, is an excellent resource for non-scientific literature, films, and art related to medicine, recovery, illness, and death. A search engine lets you
find everything from prose by Alice Walker to poetry by John Donne.
Medicaid Information - Search Medicaid for explanations of their payment policies for consumers
and healthcare professionals.
Medicare Rights Center - General information resource center for the Medicare program.
Meditations - Read an excerpt from terminal cancer patient Dr. William Bartholeme's
"Meditations," a series of essays on Bartholeme's experiences "living in the light of death" that is featured in ON OUR OWN TERMS. From
the Midwest Bioethics Center.
Memorial Sloan Kettering Cancer Center - Provides descriptions of programs, research, facilities, education
opportunities, etc., in addition to helping patients and caregivers access care.
Midwest Bioethics Center - Community-based center which provides an array of educational programs for professionals
and laymen dealing with healthcare ethics.
Missoula Demonstration Project - Web site that studies the impact of the impact of community-based
care on the quality of life of patients and their families.
Music Therapy Links - This is an extensive list of individual Web pages, Web site, and
organizations, as well as articles related to music therapy.
National Alliance for Caregiving - Joint venture of many organizations designed to support family and
professional caregivers. Includes the Family Caregiver Resource Connection, which reviews and rates hundreds of books, videos, websites, magazines, fact
sheets and other resources addressing the range of issues and questions faced by family caregivers.
National Association for Home Care - Online guide on how to choose a home care agency. Its website also lists resources
by state.
National Family Caregivers Association - NFCA is a grass roots organization created to educate, support, empower
and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones
National Funeral Directors Association - NFDA, the trade association for funeral directors, provides
consumer information about funeral options and the cost of funerals. NFDA also sells a wide range of books, pamphlets, and videos about grief and funeral
arrangements.
National Hospice and Palliative Care Organization (NHPCO) - Information, patient advocacy, professional education, and
referrals to hospice programs throughout the country.
National Respite Locator Service - Helps parents, caregivers, and professionals find respite
services in their state and local area. The service is also useful when a family travels or must move to another state. The National Respite Locator Service
is a program of the ARCH National Respite Network and Resource Center.
National Reverse Mortgage Lenders Association (NRMLA) - The Web site for the NRMLA, a national non-profit
trade association for companies that originate, service, and invest in reverse mortgages - a frequent financing option for end-of-life care. Also contains
general information on estate planning.
New Jersey Comfort Care Coalition - Resource and source of up-to-date information for both professionals in
the field and the general public. It describes work being done by the Coalition partners and by other coalitions and organizations around the country in the
fields of palliative care, hospice, pain control, and other end-of-life issues.
Ourelders.org - Links to websites with information and resources for the elderly. It is particularly helpful in
its numerous links to Alzheimer's disease-related sites
Partnership for Caring - Partnership for Caring is an advocacy organization for end-of life care.
Their Web site provides information on advance directives, pending legislation, and a range of publications and services to foster communication about
end-of-life decisions.
Patient Advocate Foundation - National non-profit organization that serves as an active liaison between the
patient and their insurer, employer and/or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis through
case managers, doctors and attorneys.
Philadelphia Online: "Seeking A Good Death" - well-organized and clearly presented
Web site with many news articles about Americans' attitudes towards death and dying. The series won a Pulitzer Prize for photography in 1997.
Project on Death in America - Project designed to explore and fundamentally change the perception of
dying and death through research, education and policy.
Promoting Excellence in End-Of-Life Care - Robert Wood Johnson Foundation national program office
overseeing 22 innovative projectives nationwide to improve quality of care for terminally-ill people and their families. Includes project descriptions,
resources, newsletter and links.
Safe Crossings - This Web site is devoted to an "anticipatory grief and bereavement
program" run by the Hospice of Seattle. It provides activities and information directed at parents, children, and professionals in a
United Network for Organ Donation - Information about how to become an organ donor, how the organ donor network works,
and national resources relating to organ donation.
VA Faculty Leaders Project for Improved Care at the End of Life - Information on the Department of Veterans
Affairs program to develop curricula for healthcare professionals working in palliative and end-of-life care. well-organized and easy-to-use format.
Visiting Nurses Association of America - Information about the nearest visiting nurse agency in their area. Visiting
Nurse Association services include: nursing, physical, occupational, and speech therapy, medical social services, high-tech home interventions, case
management, personal care, adult day care, respite care, hospice, nutritional counseling and meals on wheels.
Web of Care, Inc. - Lists of products, resources, disease-related information, online chat groups, and more.
Widownet - A Web site for those who have lost a spouse; contains a lengthy list of articles on topics from
grief to remarriage, and links to support groups and humor Web site.
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