GENERAL SITES OF INTEREST
1.
Administration on Aging
http://www.aginginplace.org/
This US government agency website has many useful resources for older Americans and family caregivers.
2. Aging
with Dignity
www.agingwithdignity.org
Aging with Dignity is a nonprofit organization with the goal of improving care for those near the end of life. Five
Wishes, an easy-to-use advance directive, is available at this site.
3.
American Alliance of Cancer Pain Initiatives (AACPI)
www.aacpi.wisc.edu
As voluntary grassroots organizations, Cancer Pain Initiatives are composed of nurses, physicians, pharmacists,
representatives of clinical care facilities, higher education, and government. These state-based initiatives and their participants provide education, training, information, and organizational
support to health care providers, cancer patients, and their families.
4.
American Association of Retired Persons (AARP)
www.aarp.org
AARP is a nonprofit, nonpartisan membership organization focused on improving the quality of life for all people as they get
older. The Health and Wellness page provides a wide range of links to information on issues such as caregiving, Medicare, and coping with loss.
5.
American Pain Foundation
www.painfoundation.org
This nonprofit information resource and patient advocacy organization aims to improve the quality of life of persons with pain
and to raise public awareness and understanding of pain. The site includes a pain care bill of rights, pain action guide, legislative updates, and patient information that can be searched by disease
type, as well as other resources and links. The Foundation is based in Baltimore, Maryland.
6.
Americans for Better Care of the Dying (ABCD)
www.abcd-caring.org
ABCD is a nonprofit public advocacy organization, which publishes ABCD Exchange, a monthly newsletter online
at www.abcd-caring.org/newsletter.htm and
in print.
7. Centers
for Medicare & Medicaid Services
http://cms.hhs.gov/
Formerly the Health Care Financing Administration, this U.S. government agency provides health insurance for 74 million
Americans through Medicare, Medicaid, and other government programs.
8. Dying
Well - Dr. Ira Byock's Website
www.dyingwell.com
Dr. Ira Byock, past president of the American Academy of Hospice and Palliative Medicine, provides written resources and
referrals for patients and families facing life-limiting illness and their professional caregivers.
9.
ElderCare Online
www.ec-online.net
ElderCare Online provides information, education, and support to family members caring for aging loved ones, especially those
coping with Alzheimer's and related dementias. The site includes a busy interactive message board as well as a bimonthly newsletter, The Caregiver's Beacon.
10. Growth
House, Inc.
www.growthhouse.org/
A search engine that offers access to a comprehensive collection of reviewed resources for end-of-life care. The
Inter-Institutional Collaborating Network on End-of-Life Care (IICN) links health care organizations through a shared network.
11. Hospice
Foundation of America
www.hospicefoundation.org/
Hospice Foundation of America is the nation's largest charity whose sole mission is to promote the hospice concept of care and
which is supported primarily by individual donations. Information about annual teleconferences available from homepage. For 2002, initiative was "Living with Grief: Loss in Later Life." These
teleconferences are available for purchase on video, dating back to 1996.
12.
Initiative to Improve Palliative Care for African-Americans (IIPCA)
www.iipca.org
Founded by Dr. Richard Payne, Dr. LaVera Crawley serves as executive director and Terrie Reid Payne serves as deputy director.
IIPCA promotes a research, education and policy agenda to improve care for African American patients facing serious illness. The website and organization are supported by the Open Society Institute
and the Project on Death in America. See the Activities page for a list of recent publications and presentations.
13. Last Chapters
www.lastchapters.org/
Last Chapters offers stories about living with dying. It is a place where people can hear about others who are facing chronic
death or chronic illness, dealing with grief, and learn how others have coped.
14.
National Alliance for Caregiving
www.caregiving.org/
The National Alliance for Caregiving (NAC) is a nonprofit joint venture, created in 1996 to support family caregivers of the
elderly and the professionals who serve them. NAC strives to increase public awareness of issues facing family caregiving.
15. National electronic Library for Health (NeLH)
www.nelh.nhs.uk
The role of the NeLH will be to provide health care professionals and the public (through National Health Service Direct
Online and the New Library Network) with knowledge and know-how to support health care related decisions.
16.
National Family Caregivers Association (NFCA)
www.nfcacares.org/
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. Through its services in the areas of information and education; support and validation; public awareness and advocacy, NFCA strives to minimize the
disparity between a caregiver's quality of life and that of mainstream Americans.
17.
National Foundation for the Treatment of Pain
www.paincare.org
This is a nonprofit organization dedicated to providing support for patients who are suffering from intractable pain, their
families, friends, and the physicians who treat them. Does not focus on end-of-life care per se, but includes a number of useful sections, including information about treating intractable
pain.
II. PROFESSIONAL ASSOCIATIONS
1.
American Academy of Hospice and Palliative Medicine (AAHPM)
www.aahpm.org/
The AAHPM is an organization of physicians and other medical professionals dedicated to excellence in palliative medicine, the
prevention and relief of suffering among patients and families by providing education and clinical practice standards, fostering research, facilitating personal and professional development of its
member and by public policy advocacy.
2.
American Academy on Physician and Patient (AAPP)
www.physicianpatient.org/
AAPP is a professional society dedicated to research, education, and professional standards in doctor-patient communication.
Its goal is no less than to change the practice of medicine by helping doctors relate more effectively to each patient. The site includes announcements about upcoming training courses and
publications.
3.
American Association of Critical-Care Nurses
www.aacn.org
The American Association of Critical-Care Nurses (AACN) is the world's largest specialty nursing organization with more than
68,000 members. Information about AACN is available at this website or by calling 800-899-AACN.
4.
American College of Health Care Administrators
www.achca.org
A professional society dedicated to advancing the standards of long-term care-from skilled nursing to assisted living to
subacute care.
5.
American Hospital Association
www.aha.org/
The American Hospital Association (AHA) is the national organization with close to 5,000 institutional, 600 associate, and
40,000 personal members that represents and serves all types of hospitals, health care networks, and their patients and communities. Each year AHA hosts the Circle of Life Award to recognize and
reward excellence in end-of-life care. Application information is available online.
6.
American Medical Directors Association
www.amda.com/
This is a national professional organization committed to the continuous improvement of the quality of patient care by
providing education, advocacy, information, and professional development for medical directors and other physicians who practice in long-term care.
7.
American Pain Society
www.ampainsoc.org/
The mission of the American Pain Society is to serve people in pain by advancing research, education, treatment, and
professional practice. APS is a nonprofit membership society and welcomes broad participation from all disciplines. Resources include the most recent information on public policy updates, reference
tools, and advances in pain management.
8.
American Society of Bioethics & Humanities
www.asbh.org/
The purpose of ASBH is to promote the exchange of ideas and foster multidisciplinary, interdisciplinary, and interprofessional
scholarship, research, teaching, policy development, professional development, and collegiality among people engaged in all of the endeavors related to clinical and academic bioethics and the
health-related humanities.
9.
American Society of Law, Medicine & Ethics
www.aslme.org/
The mission of the American Society of Law, Medicine & Ethics (ASLME) is to provide high-quality scholarship, debate, and
critical thought to the community of professionals at the intersection of law, health care, policy, and ethics.
10.
American Society on Aging
www.asaging.org/
Offers educational programs, conferences, and publications. Recently sponsored a joint conference with the National Council on
Aging, which included a preconference special program "Meeting the Needs of Family Caregivers."
11.
Association for Death Education and Counseling
www.adec.org
Founded in 1976, the Association for Death Education and Counseling (ADEC) is a multidisciplinary organization dedicated to
improving the quality of death education, counseling, and caregiving; to promoting research; and to providing support, stimulation, and encouragement to its members and those studying and working in
death-related fields.
12.
Hospice & Palliative Nurses Association (HPNA)
www.hpna.org/index.htm
HPNA is the only hospice and palliative nurses' professional association. Its purpose 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.
13.
National Hospice and Palliative Care Organization (NHPCO)
www.nhpco.org/
Formerly the NHO, this is the largest nonprofit membership organization representing hospice and palliative care programs and
professionals in the United States.
14. Mesothelioma Veterans Center
This service assist senor military veterans file for benefits/compensation resulting from service related asbestos diseases. Retired LDCR Carl Jewett, founder is a VA Accredited Claims Agent who specializes in the VA claims process. visit AMVETS for more information:
http://www.amvets.org/category/membership/member-owned-business/.