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I. GENERAL SITES OF INTEREST
Administration on Aging
www.aoa.gov/
This US government agency website has many useful resources for older Americans and family caregivers.
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.
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.
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.
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.
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.
Association internationale Ensemble contre la douleur
www.sans-douleur.ch/
Ensemble contre la douleur is a francophone nonprofit organization founded in 1997 in Geneva, Switzerland by leaders in pain management. The site hosts information primarily in French including information on its two campaigns: Vers un hôpital sans douleur (Toward a Pain Free Hospital) and Vivre avec le cancer sans douleur (Living with Cancer without Pain). The site hosts a bibliography with both French and English entries as well as a resource page providing links to French and English pain related websites and a list serve for French speakers.
Beth Israel Medical Center’s Stop Pain! Website
www.stoppain.org
This is an extensive site, addressing many topics in depth. Find resources for educators, physicians, nurses, patients, and caregivers. It highlights Beth Israel’s extensive commitment to supporting patients and their families through the Department of Pain Medicine and Palliative Care.
CancerNet
www.cancer.gov/cancer_information/
CancerNet is a gateway to recent and accurate cancer information and resources from the National Cancer Institute, the Federal Government's principal agency for cancer research. The section on support and resources at www.cancer.gov/cancer_information/support/ contains information on hospice and transitional care planning for both patients and health professionals. The site also includes a thorough list of links to other cancer-related websites.
Cancer Pain Release
www.whocancerpain.wisc.edu/
Cancer Pain Release is the publication of the World Health Organization global communications program to improve cancer pain control and palliative and supportive care.
Carers: Government Information for Carers
www.carers.gov.uk
A British governmental site with a great deal of information for family caregivers, called "carers" in the United Kingdom.
Center for Applied Ethics and Professional Practice, Education Development Center, Inc.
www.edc.org/CAE
The Center designs, implements, and evaluates solutions to health and community problems, accomplishing change in ways that respect the often-conflicting values of a pluralistic society. A major current focus is on ensuring the wise and effective use of biomedical technologies and scientific knowledge to improve the quality of life and the health of the public. Innovations in End-of-Life Care is one of several current projects designed to improve terminal and palliative care.
Center for Bioethics, University of Minnesota
www.med.umn.edu/bioethics/
The mission of the University of Minnesota's Center for Bioethics is to advance and disseminate knowledge concerning ethical issues in health care and the life sciences. The Center conducts original interdisciplinary research, offers educational programs and courses, fosters public discussion and debate through community service activities, and assists in the formulation of public policy.
Center to Advance Palliative Care
www.capc.org
Established by The Robert Wood Johnson Foundation to promote wider access to excellent palliative care in hospitals and health systems in the US, the Center aims to provide assistance in the planning, development, and implementation of hospital and health system based palliative care programs. The site includes a variety of resources and materials.
Center to Improve Care of the Dying
www.medicaring.org
The Center to Improve Care of the Dying (CICD) is a unique, interdisciplinary team of committed individuals, engaged in research, public advocacy, and education activities to improve the care of the dying and their families.
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.
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.
Edmonton Palliative Care Program
www.palliative.org/
The Division of Palliative Medicine, Department of Oncology at the University of Alberta in Edmonton, Canada and the Edmonton Regional Palliative Care Program host this palliative care site for both professional and non-professional audiences. The purpose of the site is to acquaint the visitor with the basic philosophy of palliative care and its workings in large or small centers. Content includes clinical information, patient assessment tools, cancer material, and links to related resources.
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.
Finding Our Way: Living With Dying in America
www.findingourway.net
Finding Our Way: Living With Dying in America is a series of newspaper articles that presents the real-life experiences of Americans who have struggled to find personal answers to end-of-life issues. A free online course that builds upon each of the articles in the Finding Our Way series is also available on this site.
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.
The Hastings Center
www.thehastingscenter.org
The Hastings Center is an independent, nonpartisan, interdisciplinary research institute that studies ethical and social issues in medicine, the life sciences, and the professions. The Center publishes The Hastings Center Report, a bimonthly journal featuring articles on a variety of issues in bioethics.
Health on the Net Foundation
www.hon.ch/home.html
Health On the Net Foundation (HON) is a nonprofit organization, headquartered in Geneva, Switzerland. The purpose of the Foundation is to advance the development and application of new information technologies, notably in the fields of health and medicine. The Health On the Net Code of Conduct (HONcode) has been created in response to concerns expressed to the Health On the Net Foundation regarding the varying quality of medical and health information currently available on the Web.
HELP: Helpful Essential Links to Palliative Care
www.dundee.ac.uk/MedEd/help/welcome.htm
This site is hosted by the Centre for Medical Education at the University of Dundee in collaboration with the UK charity, Macmillan Cancer Relief. Intended for an audience of medical professionals, this site has an emphasis on management of advanced cancer. Content includes pain management, management of distressing symptoms, communication issues, and emotional support for persons facing death and their loved ones.
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.
Hospice Hands
www.hospice-cares.com
The purpose of this website is to promote the hospice philosophy by providing an interactive gathering place for the online hospice community, a comprehensive index of the hospice related information available over the Internet, and by adding to that body of information with original articles. The site includes an extensive list of links, articles, and a chat forum.
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.
Institute for Healthcare Improvement (IHI)
www.ihi.org/
IHI is a Boston-based, independent, nonprofit organization working since 1991 to accelerate improvement in health care systems in the United States, Canada, and Europe by fostering collaboration, rather than competition, among health care organizations.
Joint Commission on Accreditation of Healthcare Organizations (JCAHO)
www.jcaho.org
The Joint Commission evaluates and accredits nearly 18,000 health care organizations and programs in the United States. An independent, nonprofit organization, JCAHO is the nation's predominant standards-setting and accrediting body in health care.
Last Acts Fact Sheets
www.lastacts.org/scripts/la_res01.exe?FNC=FactSheets__Ala_res_NewHome_html
Last Acts has compiled a series of "fact sheets" and "tip sheets" that
present basic information on a variety of aspects of end-of-life care.
These fact sheets cover topics such as starting the conversation about
end-of-life care, challenges for working caregivers, advance planning,
legal issues, nutrition, and others in a clear and candid way that family
members may find helpful. Readers are encouraged to print and reproduce any
of these sheets. Adobe Acrobat Reader is required to view these documents.
Download Acrobat for free at www.adobe.com
 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.
Life's End Institute: Missoula Demonstration Project
www.lifes-end.org
Life's End Institute is an innovative community project in the state of Montana that is working to improve how people experience dying, caregiving, death, and bereavement. The focus is on community-based research and public engagement to foster social change.
Massachusetts Commission on End of Life Care
www.endoflifecommission.org/
The Massachusetts Commission on End of Life Care was established by the
state legislature to improve the quality of life for citizens of the
Commonwealth near the end of life. The Commission has developed a resource
guide for end-of-life services in Massachusetts in order to better assist
individuals and their loved ones with conversations and decisions about
health care options at the end of life. The site is a rich source of
information for all interested readers. To see if your state has a similar
initiative, click on the name of your state and follow the links for health information.
Mayday Pain Project
www.painandhealth.org
The major goal of The Mayday Pain Project is to increase awareness and provide objective information concerning the treatment of pain. This site is set up to be an index for visitors and contains carefully chosen links and resources.
Midwest Bioethics Center (MBC)
www.midbio.org
MBC is a community-based ethics center dedicated to the mission of integrating ethical considerations into health care decision making throughout communities. The Center offers workshops and educational programs for professionals and lay people alike, assists health care providers throughout the US in grappling with ethical issues in clinical work, and assists administrators in integrating ethics into the organizational structure. MBC houses the Community-State Partnerships to Improve End-of-Life Care grant program funded by The Robert Wood Johnson Foundation.
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.
National Council for Hospice and Specialist Palliative Care Service
www.hospice-spc-council.org.uk/index.htm
The Council is the representative and coordinating body for all those working in hospice and specialist palliative care in England, Wales, and Northern Ireland. The website provides information on a number of publications on hospice care intended both for the general public and for professional care providers, including a directory of all hospice services in the United Kingdom. An excellent source of links and palliative care resources worldwide, this site includes the "ABC of Palliative Care," a compilation of key articles published in the British Medical Journal between September 1997 and February 1998 at www.hospice-spc-council.org.uk/informat.ion/abcofpc.htm.
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.
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.
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.
OncoLink
www.oncolink.com/
A comprehensive guide to cancer information provided by the University of Pennsylvania Cancer Center. Designed for both professionals and patients, the site includes information on specific types of cancer, medical specialties, global resources, psychological support and personal experiences, clinical trials, conferences and meetings, prevention and detection.
On Our Own Terms: Moyers on Dying
www.pbs.org/wnet/onourownterms/
In a four-part, six-hour series, Bill Moyers crosses the country from hospitals to hospices to homes to capture stories and candid conversations from multiple perspectives on this topic. The website features end-of-life care resources and community action plans as well as providing readers with the tools to engage in an ongoing dialogue about facing the end of life. Viewers can order videotapes of the series from the website.
Pain.com
www.pain.com
This rich educational site is divided into sections for professionals and consumers and includes an extensive guide to online pain resources, a pain library, pain news, and continuing medical education (CME/CE) credit available online.
Pain & Policy Studies Group (PPSG)
www.medsch.wisc.edu/painpolicy
A WHO Collaborating Center based at the University of Wisconsin in Madison,
the mission of PPSG is to achieve "balanced" international, national and
state policies to ensure adequate availability of pain medications for
patient care while preventing diversion and abuse, and to support a global
communications program to improve access to information about pain relief,
palliative care, and policy. Their work is focused predominately on
identifying and addressing the barriers to medical use of opioid analgesics
(narcotic drugs), which are essential to pain management and palliative
care. David E. Joranson, MSSW, is director of the group.
The bibliography of PPSG publications and monographs contains an extensive
list of materials in English and Spanish, and can be found at
www.medsch.wisc.edu/painpolicy/biblio.htm.
PainLink
www.edc.org/PainLink/
PainLink is a virtual community of institutions and practitioners committed to improving their pain management practices developed by staff at the Center for Applied Ethics and Professional Practice at EDC in Newton, MA. This site was initially funded by the Mayday Fund. The site has both public and members only sections. An extensive annotated list of pain related websites and resources are available to the public. Members have access to a variety of resources including technical assistance, e-mail discussions, online events, and the PainLink Clinician Survey.
Palliative Care: One Vision, One Voice
www.palliativecarenursing.ne
Palliative Care: One Vision, One Voice is an outcome of the Nursing Leadership Consortium on End-of-Life Care and is funded by the Open Society Institute's Project on Death in America. This website enables nurses to share information with other professionals about initiatives related to improving patient care at the end of life. Includes information on education, conferences, as well as a list of state-specific and international initiatives.
Palliativedrugs.com
www.palliativedrugs.com
This UK-based site offers 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.
Palliativedrugs.com, Ltd. was founded in 2000 by Robert Twycross, DM, FRCP, FRCR, and Andrew Wilcock, DM, FRCP, in order to promote and disseminate information about the use of drugs in palliative care, through the website, CD-ROM, and book versions of the Palliative Care Formulary. Profits from the company will be used to fund research and education initiatives in Palliative care emanating from Oxford and Nottingham, England.
Palliative-medicine mailbase
www.mailbase.ac.uk/lists/palliative-medicine/
A list serve for clinicians and others involved and interested in palliative care. Based in the United Kingdom, it regularly includes voices from South Africa, New Zealand, Australia, and the continent. The list is to allow for discussion on all aspects of palliative medicine and palliative care. Its aim is to facilitate communication between practitioners involved in research or educational initiatives and also allow the exchange of information or advice related to clinical matters.
Park Ridge Center for the Study of Health, Faith, and Ethics
www.prchfe.org/index.html
The Park Ridge Center is an independent, nonprofit, nonsectarian organization that conducts research, consultation, and educational programs on issues of health, faith, and ethics.
Partners Against Pain
www.partnersagainstpain.com
Partners Against Pain is divided into sections for patients and caregivers, medical professionals, and institutions who are looking for information on current research, policy, resources, and more about many of the issues having to do with pain.
Partnership for Caring: America's Voices for the Dying
www.partnershipforcaring.org
Formerly "Choice in Dying," this is a national nonprofit organization devoted to raising consumer expectations and demand for excellent end-of-life care. The site offers resources for talking about end-of-life choices and provides state-specific advance directive documents.
Princess Royal Trust for Carers
www.carers.org/
This organization sponsors Carer Centres throughout the United Kingdom for the six million adult carers there. (Carer is the British term for an unpaid family caregiver.) They estimate that there are also 50,000 young carers, or people under the age of 18 who are providing care for parents, or siblings. The site offers an online carer discussion group and chat room, as well as an extensive list of links to sites based in the United Kingdom on a wide variety of related topics.
Ready or Not: A Study Guide for Medical School Faculty
www.edc.org/Innovations/ReadyorNot
This 16-page study guide by Anna L. Romer, EdD, and Mildred Z. Solomon, EdD is designed for medical school faculty to use in conjunction with the video Ready or Not. The video is an intimate behind-the-scenes portrait of a small number of first-year medical students enrolled in the course "Living with Life-Threatening Illness" at Harvard Medical School. The course, developed by Susan Block, MD, and J. Andrew Billings, MD, pairs first-year medical students with terminally ill patients. In this study guide, medical faculty will find ways to use the video to enhance students' comfort and skill caring for dying patients and, more generally to enhance their ability to forge meaningful relationships with patients, regardless of health status.
Seeing the Difference: Conversations on Death and Dying
seeingthedifference.berkeley.edu
The Doreen B. Townsend Center for the Humanities at the University of California, Berkeley hosted a two-day institute in June 2000 that brought
together artists, humanists, and medical professionals to discuss what it means to die in America in the twenty-first century. The proceedings from
"Conversations" are available free on the website in both video and web-readable formats.
Supportive Care of the Dying: A Coalition for Compassionate Care
www.careofdying.org/
The three priorities of the coalition are research, developing models of comprehensive, community-based, supportive care for dying people, and creating a professional development program. The site has a variety of tools and resources and back issues of Supportive Voice, the newsletter of the coalition.
TALARIA: The Hypermedia Assistant for Cancer Pain Management
www.talaria.org
This site has a hypermedia presentation of the Clinical Practice Guideline on the Management of Cancer Pain, a publication of the Agency for Healthcare Research and Quality (formerly AHCPR). The site also has other resources for technical information on pain, including the complete text of Current and Emerging Issues in Cancer Pain: Research and Practice, edited by CR Chapman and K Foley published by Lipincott-Raven in 1993.
Toolkit of Instruments to Measure End-of-Life Care (TIME)
www.chcr.brown.edu/pcoc/toolkit.htm
Dr. Joan Teno has built a "toolkit" which provides a comprehensive list of tools and references, including measurement instruments related to palliative care. This site contains annotated bibliographies of tools for specific domains including: Quality of life, pain and other symptoms, emotional and cognitive symptoms, functional status, survival time and aggressiveness of care, advance care planning, continuity of care, spirituality, grief and bereavement, patient-centered reports and rankings (aka statisfaction) with the quality of care and caregiver well-being.
University of Ottawa Institute of Palliative Care
www.pallcare.org/
The University of Ottawa Institute of Palliative Care is a Canadian academic center for research and advanced interdisciplinary education in hospice and palliative care. This site contains background information on the Institute, general information about Canadian palliative care, and access to two newsletters (Pall-Connect and News Brief) for health care professionals. The site also includes an active conference area and discussion forum for the Canadian palliative care professionals.
Wisconsin Cancer Pain Initiative: A World Health Organization Demonstration Project
www.wisc.edu/wcpi/wcpihome.htm
The WCPI is dedicated to overcoming the barriers that prevent the relief of cancer pain. It is a voluntary, grassroots organization of health care professionals and representatives of higher education and government. It has five major areas of service: public education, patient education, professional education, regulatory updates, and making pain management a priority in all health care settings.
II. JOURNALS
American Journal of Hospice and Palliative Care
www.hospicejournal.com/pn01000.html
Bandolier Library: Palliative and Supportive Care
www.jr2.ox.ac.uk/bandolier/booth/booths/pall.html
Bandolier, a print and Internet journal about health care using evidence-based medicine techniques to provide advice about particular treatments or diseases for healthcare professionals and consumers, has become the premier source of evidence-based information for GPs in England. This section of the journal's library contains articles on palliative and supportive care.
British Medical Journal (BMJ)
www.bmj.com
N.B. Access is free. For BMJ’s collected resources on palliative care see www.bmj.com/cgi/collection/palliative_medicine.
European Journal of Palliative Care (EJPC)
www.ejpc.co.uk
Innovations in End-of-Life Care, online
www.edc.org/lastacts/
Free Medical Journals
www.freemedicaljournals.com
Journal of Pain and Symptom Management
www.elsevier.nl/locate/jpainsymman
Journal of Palliative Care
www.ircm.qc.ca/bioethique/english/publications/journal_of_palliative_care
Journal of Palliative Medicine in collaboration with Innovations in End-of-Life Care
www.liebertpub.com/jpm/defaultstatic.asp
Journal of the American Geriatrics Society (JAGS)
www.blackwellscience.com/journals/geriatrics/index.html
Palliative Medicine
www.arnoldpublishers.com/journals/Journpages/02692163.htm
Progress in Palliative Care
www.leeds.ac.uk/lmi/ppc/intro.html
III. PROFESSIONAL ASSOCIATIONS
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.
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.
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.
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.
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.
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.
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.
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.
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.
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."
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.
European Association for Palliative Care (EAPC)
www.eapcnet.org/
The EAPC was founded with forty individual members in 1988. It is now a federation of national and regional societies of palliative care, representing more than 25,000 individuals across Europe and other parts of the world. The website serves as an information source about the EAPC and its activities, including descriptions of publications and congresses. The website also offers a directory of participating organizations around the world including contact names and addresses. Many resources are available in French and English. A number of Innovations editorial board members play leadership roles in this organization, including Dr. Stein Kaasa, MD, PhD, who is the president.
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.
International Association for Hospice & Palliative Care (IAHPC)
www.hospicecare.com
IAHPC is a nonprofit international organization dedicated to the development and improvement of palliative care worldwide by encouraging countries to develop their own model of palliative care provision and not be expected to copy models more appropriate to affluent countries. IAHPC is currently chaired by Dr. Eduardo Bruera. Readers can join the IAHPC at this website as well as access its many resources. These include: "World Palliative Care Reports," which are short summaries of state-of-the-art palliative care in specific countries, a monthly newsletter, an extensive ethics page, updates on IAHPC activities, and links to key palliative care journals and organizations.
International Association for the Study of Pain (IASP)
www.iasp-pain.org/
The International Association for the Study of Pain is an international, multidisciplinary, nonprofit professional association dedicated to furthering research on pain and improving the care of patients with pain. Pain: Clinical Updates is the IASP newsletter is available on the Web at www.iasp-pain.org/PCUOpen.html. The IASP homepage also offers extensive links to other pain resources at www.iasp-pain.org/ressopen.html.
National Funeral Directors Association: NFDA Online
www.nfda.org/
Information for funeral directors as well as a search feature to find a funeral home or online obituary. Includes consumer protection guidelines and other consumer resources.
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.
Sociedad Española de Cuidados Paliativos (SECPAL)
www.secpal.com/
This is the website for the Spanish Association of Palliative Care; all content is in Spanish. Extensive information on the association as well a clinical guide to palliative care entitled Guias y Manuales: Cuidados Paliativos– Recomendaciones de la Sociedad Española de Cuidados Paliativos are available at www.secpal.com/guia_gral.html and access to the journal Medicina Paliativa is at www.secpal.com/revi_gral.html.
IV. PROFESSIONAL EDUCATION
Education for Physicians on End-of-Life Care (EPEC)
www.epec.net
This project specializes in physician education and training, through its core curriculum on essential clinical competencies required to provide quality end-of-life care.
End-of-Life Nursing Education Consortium (ELNEC)
www.aacn.nche.edu/elnec
A comprehensive, national education project to improve end-of-life care by nurses, ELNEC is a partnership of the American Association of Colleges of Nursing (AACN) and the Los Angeles-based City of Hope Cancer Center, supported by The Robert Wood Johnson Foundation. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care and other publications and resources can be found here.
End-of-Life Physician Education Resource Center (EPERC)
www.eperc.mcw.edu/
The purpose of EPERC is to assist physician educators and others in locating high-quality, peer-reviewed training materials. This website supports the identification and dissemination of information on end-of-life training materials, publications, conferences, and other opportunities. EPERC is supported by The Robert Wood Johnson Foundation and located at the Medical College of Wisconsin.
Initiative for Pediatric Palliative Care
www.ippcweb.org/
The Initiative for Pediatric Palliative Care is a national effort to enhance family-centered care of children living with life-threatening conditions. IPPC is spearheaded by Education Development Center in Newton, MA, in collaboration with the National Association of Children's Hospitals and Related Institutions, the New York Academy of Medicine, the Society of Pediatric Nurses, the Association of Medical School Pediatric Department Chairs, and six leading academic children's hospitals. The IPPC team has conducted research, provided technical support for quality improvement efforts in pediatric palliative care in children's hospitals, and produced a peer-reviewed 25-hour interdisciplinary curriculum and a six-part award-winning video series.
John A. Hartford Foundation
Institute of Geriatric Nursing
www.hartfordign.org/
The institute was founded in 1996 and is housed at New York University, at the Steinhardt School of Education, Division of Nursing. This site includes training information and publications to enhance geriatric nursing knowledge and skill. See the "What's New" page for the Try This series, edited by Meredith Wallace, RN, MSN, PhD (cand). This series offers short descriptions of best practices in nursing care to older adults and specific assessment tools that can be downloaded. Past topics include among others: cognitive assessment, geriatric depression scale, sexuality.
Palliative Medicine Program at the Medical College of Wisconsin
www.mcw.edu/pallmed
This site offers a variety of educational services and information for health care professionals about pain management and end-of-life care.
VA Faculty Leaders Project for Improved Care at the End of Life
www.va.gov/oaa/flp/
The VA Faculty Leaders Project is a two-year initiative of the Office of Academic Affiliations, Department of Veterans Affairs (VA). Its goal is to develop benchmark curricula for end-of-life care and palliative care as well as strategies for their implementation, for training resident physicians. This project is supported by The Robert Wood Johnson Foundation.
V. SELECTED GRANT-GIVING ORGANIZATIONS
Community-State Partnerships to Improve End-of-Life Care
www.midbio.org/npo-about.htm
A grant program funded by The Robert Wood Johnson Foundation, Community-State Partnerships to Improve End-of-Life Care, has awarded $11.25 million
to 21 broad-based, multidisciplinary coalitions working to promote policy change and support for high-quality, comprehensive end-of-life
care. This national program office is housed at the Midwest Bioethics Center in Kansas City, Missouri.
The King's Fund
www.kingsfund.org.uk/
The King's Fund is an independent health care charity working for better health in London and across the United Kingdom. It gives grants and carries out research and development work to bring about better health policies and services.
Last Acts
www.lastacts.org
A national coalition to improve care and caring near the end of life. The goal of the campaign is to bring death-related issues out in the open and help individuals and organizations pursue better ways to care for the dying. This site has many resources and links to grantees.
Within the Last Acts site is the Palliative Care Resource Center www.lastacts.org/palliativecare/.
It offers practical information to support and improve the delivery of
palliative care and is designed for clinicians, administrators, and advocates
in hospitals, nursing homes, hospices, and long-term care facilities.
It features an exclusive Last Acts report—On the Road from Theory
to Practice—created by a team of leading experts who researched
best practices in the field.
National Institutes of Health (NIH)
www.nih.gov
One of eight health agencies of the US Public Health Services, the NIH is a major funder of scientific research in the United States.
Project on Death in America (PDIA)
www.soros.org/death
PDIA’s mission is to understand and transform the culture and experience of dying and bereavement through 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. The PDIA site provides a comprehensive overview of the Project on Death in America Faculty Scholars program, grants program and funding initiatives.
Promoting Excellence in End-of-Life Care
www.promotingexcellence.org/
A national program office of The Robert Wood Johnson Foundation with direction and technical assistance provided by the Practical Ethics Center at the University of Montana. Promoting Excellence is currently funding 22 projects to improve palliative care in different parts of the US.
United Hospital Fund
www.uhfnyc.org/
United Hospital Fund Hospital Palliative Care Initiative
www.uhfnyc.org/archive/clgrant/grpci.html
This initiative is designed to improve how New York City's hospitals care for patients near the end of life and their families. The project has gathered extensive data about hospital deaths and is now developing, implementing, and testing a variety of approaches to improve care for dying patients in five hospitals. Site includes the executive summary of The Challenge of Caring for Patients near the End of Life: Findings from the Hospital Palliative Care Initiative.
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