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Caring Connections 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. Go to www.caringinfo.org to download your free state-specific
advance directive and brochures.
Aging with
Dignity
Learn more about this group's easy-to-use advance care planning document,
"Five Wishes," which is valid in 35 states.
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." Order the book online at
Amazon.com.
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.
Bazelon
Center for Pain Law
The pain law program is exploring approaches to lowering or eliminating legal
barriers to palliative care-especially effective pain management-for individuals
with terminal and serious long-term chronic illnesses.
End of Life Care for People
with Serious Mental Illness
A research program based at the UMass 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.
The National Advanced
Illness Coordinated Care (NAICC)
Programs provide the practical tools to help people get the support they need
when faced with a serious
illness, in part by
highlighting the relationship between
understanding the nature of facing advanced illness and
searching for
meaning in life.
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.
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.
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.
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 and Memorial Societies of America
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.
Growth House
An award-winning web site with resources on life-threatening illness and end-of-life issues; features its own extensive search engine, as well as links to international professional forums sponsored by diverse groups.
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.
Project on Death in America
Now completed, this was a nine-year effort to to understand and transform the culture and experience of dying and bereavement by funding initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy.
Supportive Care of the Dying
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.
The Support Team Network
The Support Team Network offers training nationwide to train people in how to begin and sustain Care Teams to care for people with health care problems or special needs.
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.
Information
on helping older people cope with national crisis: Senior citizens
may feel particularly vulnerable and should not be neglected during times of crisis, according to Gary J. Kennedy, MD, president-elect of the
American Association for Geriatric Psychiatry and a psychiatrist at Montefiore
Medical Center in Bronx, NY.
Finding Our Way, a series from Knight-Ridder
newspapers, is available on-line:
Read from other reliable government sources on
mental health and disasters at http://www.mentalhealth.org/cmhs/EmergencyServices/index.htm.
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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