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Aging with Dignity
Learn more about this group's easy-to-use advance care planning document,
"Five Wishes," which is valid in 35 states.
Caring Connections
A program of the National Hospice and Palliative Care Organization (NHPCO),
Caring Connections is a national consumer engagement initiative to improve
care at the end of life, supported by a grant from The Robert Wood Johnson
Foundation. Caring Connections brings together community, state and national
partners working to improve end-of-life care and provides free end-of-life
resources to consumers and partners. Provides free state-specific advance
directives and a variety of brochures on advance care planning including
how to communicate your end-of-life wishes, choosing a health care agent,
end-of-life decisions such as artificial nutrition and hydration, and others.
Ethical
Will Resource Kit
An ethical will is a way to share your values, beliefs, life lessons,
and hopes for the future with your family and community. Learn more and
order forms.
Ethical Wills: Putting Your Values on Paper is a book from Barry
K. Baines, M.D., Medical Director of Ucare (MN) and Associate Medical Director
of Hospice of the Twin Cities. Patients and families can use ethical wills
to describe values, and the intangibles they'd like to pass on to others.
An ethical will helps leave a legacy that says: "This is who I am. This
is what our family stands for. This is what I wish for you."
Alliance for Health
Reform
A nonpartisan group that provides health policy information to opinion
leaders so they can understand the roots of the nation's health care problems
and the trade-offs posed by competing proposals for change. The Alliance
offers an array of resources and viewpoints, in a number of formats, to
elected officials and their staffs, journalists, policy analysts and advocates.
American Bar Association
Professional association offering public resources on how to find a lawyer,
how to perform simple legal tasks on your own, and how to find a lawyer
if you cannot afford one.
End of Life Care for People with Serious Mental Illness
A research program based at the Medical School: the first state government
organization in the U.S. to explore the end of life services provided to
people with mental illness.
Medicaring: The Washington
Home Center for Palliative Care Studies
"Medicaring" is a concept in which the health care system could find the
patients who are living the end of life with serious and complex illness,
tailor services to their priorities, and pay providers in a way that encourages
quality care at a price that is tolerable to the community. The Center for
Palliative Care Studies offers referrals and quality improvement resources
for hundreds of organizations.
National Conference of State
Legislatures
Professional association for state policymakers; from the website, public
users can access state legislators and order publications, including some
on end-of-life care.
Older Women's League
As the only national grassroots membership organization to focus solely
on issues unique to women as they age, OWL strives to improve the status
and quality of life for midlife and older women. OWL focuses on research,
education, and advocacy activities conducted through a chapter network.
Thomas.loc.gov
The best way to stay current on congressional activities. Website sponsored
by the Library of Congress, features bill status, congressional schedules,
and contacts.
Urban Institute
A nonpartisan economic and social policy research institute, with resources
on many health care reform issues, especially policy implications of Medicare
reform.
Growth House
An award-winning web site with resources on life-threatening illness and end-of-life issues; features its own extensive search engine and an online bookstore.
American Academy of Hospice
and Palliative Medicine
Professional society for physicians involved in providing hospice and palliative
care, conducting research, and educating others.
American Hospice
Foundation
Foundation advances the hospice concept of care and promotes hospices
that seek to meet growing and complex needs. Offers publications on grief
and teenagers, bereavement in the workplace, and related topics.
Candlelighters
Childhood Cancer Foundation
Founded in 1970 by concerned parents of children with cancer, this group
offers resources for children, parents, cancer survivors, educators, and
health care providers.
Center to Advance Palliative
Care
Aims to promote wider access to excellent palliative care in hospitals and
health systems nationwide. The Center envisions that palliative care will
become the standard of care for Americans suffering from serious conditions
and for those approaching the end of life.
- Hospital-Hospice Partnerships in Palliative Care: Creating a
Continuum of Service, is a CAPC report profiling nine programs nationwide.
Information targets senior managers and clinical leaders of hospitals
and hospices, and features case studies, along with legal and financial
analyses. Read it online at the CAPC web site or order a copy by calling
212-201-2671.
Children's Hospice International
Founded in 1983 as a non-profit organization to provide a network of support
and care for children with life-threatening conditions and their families.
Compassion
and Choices
A nonprofit organization working to improve care and expand choice at the
end of life.
DyingWell
Resources for people facing life-limiting illness, their families, and
their professional caregivers, provided by Dr. Ira Byock, a national leader
in hospice and palliative care
Education for Physicians
on End-of-Life Care
A program designed to educate all physicians on the essential clinical competencies
required to provide quality end-of-life care. EPEC.net comprises several
complementary components. Training modules can be downloaded.
End of Life Physician
Education Resource Center (EPERC)
A central repository for educational materials and information about end
of life issues designed to assist physician educators and others in locating
high-quality, peer-reviewed training materials.
End of Life Nursing
Education Consortium
The End-of-Life Nursing Education Consortium (ELNEC) project is a comprehensive,
national education program to improve end-of-life care by nurses, and is
funded by a major grant from The Robert Wood Johnson Foundation. Major project
goals are to develop a core of expert nursing educators and to coordinate
national nursing efforts in end-of-life care.
Funeral Consumers Alliance
Works to guarantee that people have the option for affordable, dignified
funerals. Has resources nationwide and information on affordable options.
Funeralnet
An online resource for funerals, cremations, cemeteries and other subjects;
special section for veterans and their families.
Hospice Education
Institute
Serves individuals and organizations interested in improving and expanding
hospice and palliative care throughout the States and around the world.
Offers papers, seminars, and updates.
Hospice Foundation
of America
Sponsors a national teleconference to discuss issues such as grief and
the workplace and children's grief; offers a range of publications for professionals
and the public.
National Hospice and Palliative
Care Organization
Hospice membership organization dedicated to promoting and maintaining
quality care for terminally ill people and their families, and to making
hospice an integral part of the U.S. health care system. Membership and
conference information, discussion forum.
Palliative drugs
Created by leaders in palliative care, this site provides essential,
comprehensive and independent information for health professionals about
the use of drugs in palliative care. It highlights drugs given for unlicensed
indications or by unlicensed routes and the administration of multiple drugs
by continuous subcutaneous infusion.
Supportive
Care Coalition
Thirteen Catholic healthcare organizations and the Catholic Health Association
have joined together to promote culture change that will bring supportive
care, compassionate relief of suffering, and pain and symptom management
to people with life-threatening illness and their caregivers.
Symptoms
Research: Methods and Opportunity - Interactive Textbook on Pain and
Symptom Research Now on Web
Initial chapters for a free, interactive, web-based clinical pain and
symptom research textbook are now available online. Edited by Mitchell Max
and Joanne Lynn and funded by the National Institute of Dental and Craniofacial
Research, the Interactive Textbook of Clinical Symptom Research is intended
to prepare beginning and advanced students for developing research proposals.
Administration on Aging
Features information about AoA's programs, which help older people and their
caregivers to enhance and support their independence. Links to other federal
programs. Information for the public, practitioners, and the aging community.
The AGS Foundation
for Health in Aging (FHA)
The FHA, part of the American Geriatrics Society, aims to link geriatrics
health care professionals and the public, and to advocate on behalf of older
adults and their special needs: wellness and preventive care, self-responsibility
and independence, and connections to the family and community. The website
features information for consumers, along with research and a newly created
clearinghouse.
Alliance for Aging
Research
A private, not-for-profit advocacy organization fighting for science
policies to speed breakthroughs for greater health, vitality and longevity.
American Association
for Geriatric Psychiatry
Provides referrals for geriatric psychiatrists, tracks relevant policy
and legislation, and offers material for patients, families, and caregivers.
American Association of Retired
Persons
Nation's largest organization representing older Americans; has begun
to focus on issues surrounding end-of-life and serious and complex illness.
American Geriatrics
Society
Professional society primarily for health care professionals, although
membership is open to all. Provides to health care professionals, policy
makers and the public by developing, implementing and advocating programs
in patient care, research, professional and public education, and public
policy. New clearinghouse offers information relevant to end-of-life issues.
American Medical Directors
Association
Professional organization for physicians based in long-term care facilities,
with a focus on quality improvement and public policy change.
American Psychological Association
Professional society with information on aging and psychology, including
free publications on elder abuse, working with older people, and public
policy.
American Society on Aging
Professional organization offering educational programming, publications
and information and training resources.
The BenefitsCheckUp
The nation's first free, 50-state (including the District of Columbia) online
service to provide public benefit screening. BenefitsCheckUp is sponsored
by The National Council on the Aging (NCOA) to address a national problem:
millions of older adults are eligible for benefits, but do not know how
to apply for them. Users complete a 10-minute survey, which then provides
an individual analysis of benefit programs for which an individual might
be eligible and how to apply for them.
SPRY
SPRY's mission is to help older adults plan for a healthy and financially
secure future. To that end, SPRY conducts research and develops education
programs.
United Seniors
Health Council
A not-for-profit organization of consumers, advocates and eldercare
professionals who are commited to the belief that informed consumers are
best able to help themselves. USHC is a leading source of accurate, unbiased
information for aging network professionals, older consumers and family
members.
Foundation for Accountability
FACCT creates tools to help people understand and use quality information,
develops consumer-focused quality measures, supports public education about
health care quality, supports efforts to gather and provide quality information,
and encourages health policy to empower and inform consumers.
Improving
Health Care Quality: A Guide for Patients and Families focuses on the
key health care choices people typically make, such as choices about doctors,
hospitals, and treatments, and stresses taking an active role in not only
these decisions, but all of the decisions made about one's care.
Institute for Healthcare Improvement
IHI promotes rapid-cycle change throughout the health care system and
has sponsored Breakthrough Series Collaboratives on improving end-of-life
care.
National Coalition on Health
Care
NCHC is the nation's largest alliance working to improve care; its members
employ or represent approximately 100 million Americans. In 2000, NCHC sponsored
a monograph on exemplary end-of-life programs, which can be downloaded.
National Quality
Forum
A not-for-profit membership organization created to develop and implement
a national strategy for health care quality measurement and reporting, led
by the VA's former Undersecretary for Health, Kenneth Kizer.
American Chronic Pain
Association
With more than 800 chapters worldwide, the ACPA provides a support system,
through education and self-help group activities, for those suffering with
chronic pain through education and self-help group activities. Offers training
in skills and attitudes that have been proven effective in helping people
deal with chronic pain.
American Pain Foundation
An online resource center for people in pain, their family and friends,
and the public. Advocates for public policy to improve treatment of pain.
Offers free answering service via a toll-free number.
American Pain Society
A multidisciplinary organization of basic and clinical scientists, practicing
clinicians, policy analysts, and others. Members work to advance pain-related
research, education, treatment and professional practice.
The City of Hope Pain/Palliative
Care Resource Center/Nursing Research and Education
A clearinghouse designed tohelp other individuals and institutions improve
the quality of pain management. It is a central source for collecting a
variety of materials including pain assessment tools, patient education
materials, quality assurance materials, research instruments and other resources.
StopPain
Based at the Beth Israel Medical Center, this site offers excellent
resources for professionals and the public, including useful publications
for caregivers.
National Association of Home
Care
National organization offering referrals to resources on homecare, as
well as extensive updates on federal legislation affecting long-term care.
National Association
of Professional Geriatric Care Managers
A non-profit, professional organization of practitioners whose work
is to help individuals and families coordinate health care and human services.
Find care managers nationwide from this website.
National Family Caregivers
Association
Focuses on information and education, public awareness and advocacy to "minimize
the disparity between a caregiver's quality of life and that of mainstream
Americans."
The Compassionate
Friends
National self-help support organization for families grieving the death of a child. Provides information to help others be supportive.
Good Intentions
An organization committed to providing a network of resources and education to individuals, companies and community groups experiencing difficult times related to normal life experiences of illness, divorce, death, and loss.
Facing
Death
Five-part video series addressing practical issues of loss, planning, and bereavement.
- "Facing Death, Facing Grief: Teens Healing at Camp Brave Heart"
is the fifth in the series of videos produced by Family Experiences
Productions, Inc. The program addresses topics of special importance
to teens, such as going back to school, dealing with friends and gossip,
grieving with the body. Program filmed at Hospice Austin's Camp Brave
Heart. Program includes discussion guides for viewers and leaders; a
special version with information about 9-11 is also available.
GriefNet
An online community of people dealing with grief, death, and other major
losses. It has 37 email support groups and two web sites. A companion site,
KIDSAID, provides a safe environment for children and their parents to find
information and ask questions.
Heart-to-Heart Audio Programs
The Heart-to-Heart audio series explores key state policy issues that impact
end-of-life care though interviews with experts in the field, state policy
leaders, patients and their loved ones. These high-quality audio programs
weave together dynamic interviews with original music, professional narration,
documentary scenes and ambient sound effects. The series is offered in convenient
audio CD format that can be used while commuting or doing other things.
National Funeral Directors
Association
Trade organization of more than 13,000 funeral directors--a group that
often provides grief and bereavement support to families. NFDA aims to enhance
the funeral service profession and promote quality service to the consumer.
National Mental Health Association
A large organization with 340 state affiliates which work to improve
mental health policy and the lives of people with mental illness; has referrals
for counseling and support programs.
National Chronic Care
Consortium
The NCCC is an alliance of individuals and organizations across industry
segments and professions committed to chronic illness care reform.
American Self-Help
Clearinghouse
Extensive, searchable database developed to be starting point for exploring
real-life support groups and networks that are available throughout the
world and in your community. The self-help groups can help you find and/or
start a support group in your community.
Assisted Living Federation
of America
Represents over 7,000 for-profit and not-for-profit providers of assisted
living, continuing care retirement communities, independent living and other
forms of housing and services. Offers searchable database for consumers.
National Self-Help
Clearinghouse
Facilitates access to self-help groups and increases the awareness of the
importance of mutual support. The clearinghouse provides a number of services,
such as assisting human services agencies, providing information and referral
services, and conducting training for self-help group leaders.
United Hospital Fund
New-York City based health services research and philanthropic organization
which addresses health care issues in NYC hospitals. Several new publications
focus on end-of-life and caregiving issues.
Agency for Healthcare Research
and Quality (AHRQ)
Funds and conducts research that provides evidence-based information
on health care outcomes; quality; and cost, use, and access. Supports research
designed to improve the outcomes and quality of health care, reduce its
costs, address patient safety and medical errors, and broaden access to
effective services.
Read AHRQ's report on practices to improve patient safety: "Making Health
Care Safer: A Critical Analysis of Patient Safety Practices," at
www.ahrq.gov/clinic/ptsafety/.
Healthfinder
Sponsored by the Department of Health and Human Services, this site links
to thousands of health-related sites that have been screened for accuracy
and usefulness.
Medicare
U.S. government site for Medicare, including coverage and benefit information,
tools to compare nursing home facilities, and other beneficiary information
.
Veterans Health
Administration (VHA)
The VHA serves America's veterans by providing primary care, specialized
care, and related medical and social support services. It has been a leader
in programs to improve end-of-life care and pain management, and is a gateway
to many useful resources for professionals and the public.
The Tragedy Assistance Program for Survivors, Inc. (TAPS),
www.taps.org, is a national
non-profit organization serving survivors whose loved ones have died while
serving in the Armed Forces.
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