Relevant Links
End of Life
AARP Grief and Loss [www.aarp.org/griefandloss]
Coping with Grief and Loss from AARP. Sections for the bereaved, for professionals
working with grief and loss, and resource information.
AMA-EPEC [http://www.epec.net/]
Designed to educate physicians across the United States on the essential clinical
competencies required to provide quality end-of-life care.
American Academy of Hospice and Palliative Medicine [http://www.aahpm.org/]
An organization for physicians dedicated to the advancement of hospice/palliative
medicine, its practice, research, and education. This site includes product and
publication information, slide sets, upcoming events, and relevant links.
American Board of Hospice and Palliative Medicine [http://www.abhpm.org/
Information about ABHPM certified physicians and the certification process.
American Pain Society [http://www.ampainsoc.org/]
A multidisciplinary educational and scientific organization dedicated to serving people in
pain.
Center to Advance Palliative Care [http://www.capc.org/
Provides technical assistance needed to establish palliative care programs as well as
opportunities to network with colleagues in the palliative care community; features CAPC
publications, education calendar and information about advocacy activities.
Center to Improve Care of the Dying [http://www.gwu.edu/~cicd/]
An interdisciplinary team of individuals engaged in research, public advocacy, and
education activities to improve care of the dying.
Center for Practical Bio Ethics [http://www.practicalbioethics.org/]
Provides grants to support statewide coalitions composed of citizens, health care
professionals, educators and policymakers that identify problems, make recommendations and
build public support for practical policies, regulations and guidelines to improve care of
the dying. Publishes State Initiatives in End-of-Life Care.
Decisions Near the End of Life [www.edc.org/CAE/Decisions/dnel.html]
A multidisciplinary continuing education program for hospitals and nursing facilities,
intended to help institutions design their own solutions for improving care of the
critically and terminally ill.
Dying Well [http://www.dyingwell.org/]
Resources and referrals to organizations, Web sites and books to empower persons with
life-threatening illnesses and their families to live as fully as possible during the
dying process.
End-of-Life Nursing Education Consortium
(ELNEC) [www.aacn.nche.edu/elnec]
A comprehensive national education program to develop a core of expert nursing educators
and to coordinate national nursing efforts in end-of-life care.
End of Life Physician Education Resource Center
[www.eperc.mcw.edu]
A centralized, comprehensive resource for end of life physician educators.
Registrants can search for abstracts of peer reviewed educational materials -- as well as
funding and training opportunities, significant articles and suggested books.
Finding Our Way [http://www.findingourway.net/]
Finding Our Way is a short course on death and dying in America today. These topics can't
be avoided by any of us. The practical advice, resources, and personal stories in Finding
Our Way can teach how to approach these most significant life events with the same kind of
planning and emotional preparedness we strive for in the rest of our lives. We are finding
better ways to live with dying in America.
Foundation for Accountability [http://www.facct.org/]
Reports on the development of a measurement of quality end-of-life health care.
GrowthHouse [http://www.growthhouse.org/]
Provides information and referral, public education, and international professional
networking on the whole spectrum of issues related to end of life.
Institute of Medicine: Report on the
Committee on Care at the End-of-Life [ http://www.nap.edu/catalog/5801.html
]
Text of the IOM Report Approaching Death: Improving Care at the End of Life.
Missoula Demonstration Project, Inc. - The Quality of Life=s
End [www.dyingwell.org/MDP.htm]
Reports and resources from a project of research on the experience of dying and the
determinants of quality at life=s end.
National Hospice and Palliative Care Organization [http://www.nho.org/
Home page for the National Hospice and Palliative Care Organization.
Oregon Health Decisions[http://www.oregonhealthdecisions.org/]
Promoting Excellence in End-of-Life Care [http://www.promotingexcellence.org/]
Manages 22 grant-funded projects designed to demonstrate excellence in end-of-life care in
diverse institutional settings. The project is a National Program Office of The
Robert Wood Johnson Foundation, headquartered in Missoula, Montana.
The RAND Center to Improve Care of the Dying
[www.rand.org/organization/health/dying.html]
Conducts research designed to improve a system of care in which persons with serious and
eventually fatal chronic illness can live comfortably and meaningfully until death.
Supportive Care of the Dying [http://www.careofdying.org/]
Develops and tests innovative projects with individuals and organizations working to
improve delivery of care to those facing the end of life. Videos and facilitator
guides are available to help improve physician communication with patients and families.
University of Wisconsin Pain and Policy Studies Group [http://www.medsch.wisc.edu/painpolicy/]
Designed to facilitate public access to information about pain relief and public policy,
including material published by the PPSG, its WHO Collaborating Center, and other
authoritative sources.
Research Ethics
Center for Drug Evaluation and Research: http://www.fda.gov/cder/
Clinical Trials Listing Service: http://www.centerwatch.com/
General Ethics Articles: http://TheDoctorWillSeeYouNow.com/articles/bioethics
No nursing skill is necessary. Companions should be willing to hold the hand of the patient, play music, read to the patient, fluff pillows, and assist in comfort care measures as requested by the patient or directed by the nurse. Nurses or other health care professionals who volunteer for No One Dies Alone will not provide actual nursing care during the vigil but will assist only as a companion.
A companion supply bag containing a CD player and CDs and other helpful items is available for volunteers to pickup on their way to their vigil with a patient.