Website Links
Below is a list of links to internet websites that may be of interest to nurses and nursing aides who provide long-term and end-of-life care.
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Educational and Professional Nursing Organizations
American Nurses Association (ANA)
Advances the nursing profession by fostering high standards of nursing practice, promoting the economic and general welfare of nurses in the workplace, projecting a positive and realistic view of nursing, and by lobbying the Congress and regulatory agencies on health care issues affecting nurses and the public.
http://www.ana.org/
American Society of Pain Management Nurses (ASPMN)
An organization of professional nurses dedicated to promoting and providing optimal care of patients with pain, including the management of its sequelae. This is accomplished through education, standards, advocacy, and research.
http://www.aspmn.org/
End-of-Life Nursing Education Consortium (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.
http://www.aacn.nche.edu/elnec/
Hospice and Palliative Nurses Association (HPNA)
A professional nursing organization whose 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.
http://www.hpna.org/
Pain Resource Center: City of Hope (COHPPRC)
Serves as a clearinghouse to disseminate information and resources that will enable other individuals and institutions to improve the quality of pain management.
http://prc.coh.org/
Hospice and Palliative Care
American Hospice Foundation
Advances the hospice concept of care and promotes hospices that seek to meet growing and complex needs of dying persons.
http://www.americanhospice.org/
American Hospital Association Circle of Life Award
Presented annually to recognize outstanding initiatives to improve end-of-life care.
http://www.aha.org/circleoflife/
The Center to Advance Palliative Care (CAPC)
a resource to hospitals and other healthcare settings interested in developing palliative care programs.
http://www.capcmssm.org/
The End of Life Physician Education Resource Center (EPERC)
A central repository for educational materials and information about end-of-life issues.
http://www.eperc.mcw.edu/
Hospice Foundation of America (HFA)
A nonprofit organization that promotes hospice care and works to educate professionals and the families they serve in issues relating to caregiving, terminal illness, loss and bereavement.
http://www.hospicefoundation.org/
The National Hospice and Palliative Care Organization (NHPCO)
The largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
http://www.nhpco.org/
Palliative Care Nursing
A source of online information on palliative and end-of-life care. Share information with other professionals about initiatives related to improving patient care at the end of life.
http://www.palliativecarenursing.net/
The International Association for Hospice and Palliative Care
Dedicated to "sharing palliative care information worldwide." A membership organization with an international Board, it is open to all members of the interdisciplinary team.
http://www.hospicecare.com/
Geriatrics / Long-Term Care
American Society on Aging
A professional organization working towards enhancing the knowledge and skills of those working with older adults and their families.
http://www.asaging.org/
Alzheimers Association
This site is a gateway to information about Alzheimer's disease, for patients, family/caregivers, health professionals, researchers and the media.
http://www.alz.org/
Gerontological Society of America
A professional organization dedicated to promoting and disseminating research on aging.
http://www.geron.org/
The John A. Hartford Foundation Institute for Geriatric Nursing
Seeks to shape the quality of health care older Americans receive by promoting the highest level of geriatric competence in all nurses.
http://www.hartfordign.org/
NADONA
NADONA/LTC is the only professional non-profit association specifically serving Directors and Assistant Directors of nursing in Long Term Care.
http://www.nadona.org/
The American Medical Directors Association
A national professional association 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 the long term care continuum
http://www.amda.com/
Nonprofit and Advocacy Groups
Aging With Dignity
The non-profit Aging With Dignity was established to safeguard the rights of the sick, aging or dying. Aging With Dignity provides practical information, advice, and legal tools useful in ensuring that an individual’s wishes will be respected. The Aging With Dignity Website offers a form of advance directive called Five Wishes, a document that can help individuals express how they want to be treated if they are seriously ill and unable to speak for themselves. The Five Wishes document can be ordered from the website.
http://www.agingwithdignity.org/
Americans for Better Care of the Dying (ABCD)
Dedicated to social, professional and policy reform aimed at improving the care system for patients with serious illness and for their families.
http://www.abcd-caring.org/
Dying Well
Resources and referrals to organizations, websites, and books to empower persons with life-threatening illnesses and their families to live as fully as possible during the dying process.
http://www.dyingwell.org/
Northwest Justice Project (NJP)
The Northwest Justice Project is a not-for-profit statewide organization that provides free civil legal services to low-income people throughout the state of Washington. The NJP website provides answers to a wide array of questions regarding Powers of Attorney, as well as sample DPOA (Durable Power of Attorney) and other forms.
http://www.nwjustice.org/
On Our Own Terms: Moyers on Dying
Supports the On Our Own Terms outreach campaign with various tools, articles, personal stories, audio and video clips, and interactive opportunities.
http://www.thirteen.org/onourownterms/
National Citizens' Coalition for Nursing Home Reform (NCCNHR)
A grassroots consumer/advocate organization that provides information and leadership on federal and state regulatory and legislative policy development and models and strategies to improve care and life for residents of nursing homes and other long term care facilities.
http://www.nccnhr.org/
Pain Management
American Pain Foundation, Inc.
A nonprofit information resource and advocacy organization for people with pain, their families, friends, caregivers, the media, legislators and the general public.
http://www.painfoundation.org/
American Pain Society (APS)
A multidisciplinary organization of basic and clinical scientists, practicing clinicians, policy analysts, and others. The mission of the American Pain Society is to advance pain-related research, education, treatment and professional practice.
http://www.ampainsoc.org/
International Association for the Study of Pain (IASP)
An international, multidisciplinary, non-profit professional association dedicated to furthering research on pain and improving the care of patients with pain.
http://www.iasp-pain.org/
Pain and Policy Studies Group: University of Wisconsin
The purpose of this website is to facilitate public access to information about pain relief and public policy, including material published by the PPSG and other authoritative sources.
http://www.medsch.wisc.edu/painpolicy/
Policy and Research
Facts On Dying: Policy Relevant Data on Care at the End of Life
The Brown University Center for Gerontology and Health Care Research, with funding from the Robert Wood Johnson Foundation, is engaged in a five-year research effort to use both existing and new data collections to describe the dying experience in the United States of America utilizing maps which display geographical data about quality of end-of-life care.
http://www.chcr.brown.edu/dying/factsondying.htm
National Institutes of Health (NIH)
The NIH is the principal biomedical research agency of the United States Government.
http://www.nih.gov/
National Institute on Aging (NIA)
One of the National Institutes of Health. Conducts and supports biomedical, social, and behavioral research; provides research training; and disseminates research findings and health information on aging.
http://www.nia.nih.gov/
Project on Death in America
Dedicated to understanding and transforming the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities and the arts and to fostering innovations in the provision of care, public education, professional education and public policy.
http://www.soros.org/death/
Promoting Excellence in End-of-Life Care
Manages 22 grant-funded projects designed to demonstrate excellence in end-of-life care in diverse institutional settings.
http://www.promotingexcellence.org/
Robert Wood Johnson Foundation (RWJ)
The largest US foundation devoted to improving the health and health care of all Americans.
http://www.rwjf.org/
Culture
Cultural Diversity in Nursing
Authored by two nurses in order to share with nurses and other healthcare professionals their experiences and thoughts concerning the complexities involved in caring for people from diverse cultural backgrounds.
http://www.culturediversity.org/
CultureClues©
CultureClues© are tip sheets for clinicians designed to increase awareness about concepts and preferences of patients from the diverse cultures served by University of Washington Medical Center.
http://www.depts.washington.edu/pfes/cultureclues.html
Diversity Rx.
Promoting language and cultural competence to improve the quality of health care for minority, immigrant, and ethnically diverse communities.
http://www.diversityrx.org/
Ethnomed
Contains information about cultural beliefs, medical issues and other related issues pertinent to the health care of recent immigrants to Seattle, many of whom are refugees fleeing war-torn parts of the world.
http://www.ethnomed.org/
Cross Cultural Health Program (CCHCP)
Since 1992, the CCHCP has been addressing broad cultural issues that impact the health of individuals and families in ethnic minority communities in Seattle and nationwide.
http://www.xculture.org/
Oncology Nursing Society: Multicultural Tool Kit
This hands-on, problem-based learning kit has been designed to provide the user with fundamental knowledge for providing culturally competent care to individuals, families, and communities from various ethnic, religious, cultural, or social settings.
http://www.ons.org/clinical/Treatment/Toolkit.shtml
The Provider's Guide to Quality and Culture
This web site is designed to assist health care organizations and providers throughout the United States in providing high quality, culturally competent services to multi-ethnic populations. Also contains links to other web sites containing useful information related to cultural competence and health care.
http://erc.msh.org/quality&culture
Transcultural Nursing Society
Transcultural nursing is the holistic, beneficial, and rewarding way to serve human beings worldwide and to expand nurses' views of the true nature and scope of human care services.
http://www.tcns.org/
Ethics
Center for BioEthics, The Medical College of WI
This center is committed to helping health care professionals, students, policy makers and community members explore the challenging ethical questions that have accompanied scientific advances and changes in our health care delivery system.
http://www.mcw.edu/bioethics/
Midwest Bioethics Center
Dedicated to integrating ethical considerations into healthcare decision-making throughout communities, this center offers workshops and educational programs for professionals and lay people alike, assists healthcare providers throughout the country in grappling with ethical issues in clinical work, and assists administrators in integrating ethics into the organizational structure.
http://www.midbio.org/mbc-cc.htm
Spirituality
Healthcare Chaplaincy
A multifaith community of professionals dedicated to the advancement of pastoral care, research and education.
http://www.healthcarechaplaincy.org/
Park Ridge Center for the Study of Health, Faith and Ethics
Explores and enhances the interaction of health, faith, and ethics through research, education and consultation to improve the lives of individuals and communities.
http://www.parkridgecenter.org/
Spiritual Care Program
Focus on teaching and providing spiritual care to those who are dying and for the health care professionals involved in their care.
http://www.spcare.org/
Regulatory
Agency for Healthcare Research and Policy (AHRQ)
AHRQ is the lead agency of the United States federal government responsible for research on the health care system. The organization's goal is to ensure that complete and accurate information is available to those who make decisions about health care.
http://www.ahcpr.gov/
Centers for Medicare and Medicaid (CMS)
Previously known as the Health Care Financing Administration, CMS is a federal agency within the U.S. Department of Health and Human Services. CMS runs the Medicare and Medicaid programs.
http://www.cms.hhs.gov/
Medicare Rights Center (MRC)
The Medicare Rights Center is a not-for-profit organization dedicated to ensuring that older adults and people with disabilities get good, affordable health care. The Web site offers helpful and reliable Medicare information for professionals in the health care field.
http://www.medicarerights.org/
Nursing Home Compare
A tool that provides detailed information about the performance of every Medicare and Medicaid certified nursing home in the country.
http://www.medicare.gov/NHCompare/home.asp
Complementary and Alternative Therapy
National Center for Complementary and Alternative Medicine (NCCAM)
Located within the National Institutes of Health (NIH), the NCCAM works to stimulate, develop, and support research on complementary and alternative medicine (CAM) for the benefit of the public. The NCCAM is an advocate for quality science, rigorous and relevant research, and open and objective inquiry into which CAM practices work, which do not, and why.
http://nccam.nih.gov/
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