Guidelines for the Use of this List
- 1
These Web sites have been visited, and information on them may be appropriate for patients, their families, and care providers.
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Before recommending a site to patients, it would be prudent to visit the site and see the information available on it.
- 3
Many good downloads are available on the sites listed.
Agency for Healthcare Research and Quality
The Agency for Healthcare Research and Quality is the lead agency charged with supporting research designed to improve the quality of health care, reduce its cost, and broaden access to essential services.
ALS Association and ALS Society of Canada
Contains information about new treatments, drugs, and clinical trials and provides access to brochures, books, and videos that health care workers can offer to their patients. There is a wealth of information on the site in general about amyotrophic lateral sclerosis as well as a special section for patients, their families, and caregivers in general.
American Academy of Hospice and Palliative Medicine
The American Academy of Hospice and Palliative Medicine is an organization for physicians who are committed to furthering and fostering the practice of hospice and palliative care for the terminally ill and their families.
American Geriatrics Society
The American Geriatrics Society is a professional organization of health care providers dedicated to improving and effecting change for the health and well-being of all older adults.
American Hospice Foundation
This site provides links to other hospices, palliative care organizations, and foundations all over the United States. It also has specific tools and resources that explore legal issues and a section geared specifically toward helping grieving children and teenagers.
American Pain Society
The American Pain Society is a nonprofit multidisciplinary educational and scientific organization dedicated to serving people in pain, through research, education, treatment, and professional practice.
American Society for Bioethics and Humanities
This professional society is composed of individuals, organizations, and institutions interested in bioethics and humanities.
American Society of Law, Medicine and Ethics
This organization provides high-quality scholarship, debate, and critical thought to the community of professionals at the intersection of law, health care, policy, and ethics.
Americans for Better Care of the Dying: ABCD
ABCD is a nonprofit coalition of citizens and professionals united to ensure that public policy addresses the needs of individuals and families coping with a fatal illness.
Association of Cancer Online Resources, Inc.
The Association of Cancer Online Resources, Inc. is a nonprofit patient advocacy organization founded to develop, support, and represent Internet-based resources providing high-quality, up-to-date information and support to patients with cancer and to provide open communication channels between and among patients, health professionals, and research scientists.
Biomed Central
www.biomedcentral.com/bmcpalliatcare
This free online journal offers limited numbers of articles but has a search function.
Brave Kids
This is an excellent network of links to books, videos, Web sites, and services for parents of children with chronic life-threatening illnesses. Separate message boards are available for both the parents and the children themselves. A handy search is available at the top that is organized by resource type, disease, or condition.
Canadian Hospice Palliative Care Association
The Canadian Hospice Palliative Care Association is the national association in Canada for hospice palliative care. The site provides important information about Canadian palliative care and its programs. It has a marketplace function and a number of resources available for patient and care provider information.
Canadian Partnership Against Cancer
www.partnershipagainstcancer.ca
This is the website of a 5-year project funded by the Canadian government to advance the holistic care of cancer patients. One task force has a mandate that includes palliative care.
Canadian Virtual Hospice
This resource is intended for health care professionals, patients, family, and palliative care workers. The information available for patients and family is sensitive but addresses key issues. Some online advice is available but not to care providers in the United States.
Caregiver Network
Based in Toronto, Canada, the goal of the Caregiver Network is to be a national single information source to make life as a caregiver easier.
Caregiver Survival Resources
Caregiving is becoming a significant issue for many people. This resource provides help to others to cope with the demands of caregiving.
Caring Connections
This is a resource for health care professionals to offer patients and families. There are sections on advanced care planning, financial planning, grief, caregiving, pain, and hospice. The site contains an extensive amount of information on each of these topics as well as many external links to other useful resources.
Catholic Health Association of the United States
Roman Catholic–sponsored health organizations provide the aged and chronically ill population with a broad spectrum of high-quality professional services.
Center to Advance Palliative Care
The Center to Advance Palliative Care is dedicated to increasing the availability of high-quality palliative care services in hospitals and other health care settings for people with life-threatening illnesses, their families, and caregivers. Useful assessment tools are available for download.
Centers for Disease Control and Prevention
The mission of the Centers for Disease Control and Prevention is to promote health and quality of life by preventing and controlling disease, injury, and disability.
Children’s Hospice International
This is a resource for hospice services globally and in the United States for services specific to children. It has several books for adults regarding children’s death and dying and some especially for children. Membership is available at a minimal fee.
Department of Health and Human Services, Healthfinder
Healthfinder is a consumer health and human services information Web site that links to selected online publications, Web sites, and not-for-profit organizations.
Dying Well
By defining wellness through the end of life, this Web site provides resources for patients and families facing life-limiting illness.
Edmonton Regional Palliative Care Program
The site makes available clinical assessment tools, clinical practice guidelines, and a useful section on practical solutions for common problems in the terminally ill. A very useful palliative care manual contains chapters on pain management, mood disorders, confusion, eating disorders, and many other common symptoms encountered in palliative care. The site also contains a PDF version of a very useful document titled Alberta Hospice Palliative Care Resource Manual.
Education in Palliative and End-of-life Care Project
The Education in Palliative and End of Life Care Project is a national education program that is based on a train-the-trainer model. Modules are available online for a fee. Special programs in oncology and emergency medicine have been developed.
End of Life/Palliative Education Resource Center
The purpose of this organization is to assist physicians and other educators involved in all aspects of physician end-of-life education; brief abstracts describe peer-reviewed instructional and evaluation materials. A list of core resources is available for end-of-life educators, as well as opportunities for training, extramural funding, and pending conferences. Educational materials can be submitted for peer review and potential inclusion on the site.
Epocrates
This site is partly commercial. Free entry allows access to and downloading to a PDA of an extensive list of drugs and alternative medications. The site explains adult dosing, pediatric dosing, drug interactions, contraindications, and adverse reactions. The premium edition is available for a fee.
European Association of Palliative Care
This site has resource materials and information about conferences.
Fraser Health Authority Palliative Care Guidelines
www.fraserhealth.ca/professionals/hospice_palliative_care
These guidelines are one of many resources available to health care professionals in Fraser Health to improve health care outcomes in hospice palliative/end-of-life care. These guidelines provide recommendations based on scientific evidence and expert clinical opinion, as well as practical and easy to follow advice to health care providers for effective patient care.
Growthhouse
This site is an international gateway to resources for life-threatening illness and end-of-life issues.
Hospice and Palliative Nurses Association
This organization provides information and courses about pain management and caring for dying people. The site also has many links to hospices and care centers in the United States.
Hospice Net
This site is useful for the general public, including family, friends, and dying persons themselves. It contains a section specifically addressing concerns about how to live with the diagnosis, as well as pain management issues. It also includes a section on explaining death to young children and specific ways of dealing with grief in children, as well as an exhaustive general description of hospice.
International Association for the Study of Pain
This organization is open to scientists, physicians, dentists, psychologists, nurses, physical therapists, and other health professionals actively engaged in pain research and to those who have an interest in the treatment of pain.
International Hospice Palliative Care Association
Their mission is to collaborate and work to improve the quality of life of patients with advanced life-threatening conditions and their families, by advancing hospice and palliative care programs, education, research, and favorable policies around the world.
International Observatory on End of Life Care
The aim of the International Observatory on End of Life Care is to undertake high quality research, clinical studies, evaluation, education, advocacy, and consultancy to improve palliative and end-of-life care for patients and family carers.
International Palliative Care Resource Center
Access to an extensive array of palliative care resources, including comfort, supportive, hospice, end-of-life, terminal, and bereavement care, with a layout based on the Conceptual Framework of Palliative Care and the World Health Organization (WHO) strategy for developing palliative care capacity.
Living Lessons
The Living Lessons campaign is a national initiative providing resources for patients, caregivers, and health care professionals involved with end-of-life care in Canada.
National Association for Home Care and hospice
This organization is committed to serving the home care and hospice industry, which provides services to the sick, the disabled, and the terminally ill in the comfort of their homes. Information is provided about details of hospice and home care in the United States, including what it is, who provides it, how it is paid for, and what can be done if you have a problem with the services.
National Cancer Institute
A wide range of accurate, credible cancer information from the National Cancer Institute can be found on this site. The comprehensive cancer database includes summaries on cancer treatment, screening, prevention, and palliative and supportive care as well as information on ongoing clinical trials.
National Center for Health Statistics
The National Center for Health Statistics provides statistical information that will guide actions and policies to improve the health of the people of the United States.
National Comprehensive cancer network
The National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of 21 of the world’s leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Guidelines for cancer pain and other resources are online.
National Conference of State Legislatures
The National Conference of State Legislatures report helps state lawmakers to make informed decisions regarding assisted suicide, pain management, and other end-of-life care policies.
National Family Caregivers Association
This organization is predicated on the belief that caregivers who choose to take charge of their lives, and who see caregiving as but one of its facets, are in a position to be happier and healthier individuals.
National Hospice and Palliative Care Organization
Founded in 1978, the National Hospice and Palliative Care Organization is the oldest and largest nonprofit public benefit organization devoted exclusively to hospice care. It is dedicated to promoting and maintaining high-quality care for terminally ill persons and their families and to making hospice an integral part of the health care system in the United States.
National Institute on Aging
The National Institute on Aging promotes healthy aging by conducting and supporting biomedical, social, and behavioral research and public education.
National Initiative on Care of the Elderly
NICE is an international network of researchers, practitioners, and students dedicated to improving the care of older adults, both in Canada and abroad.
OncoLink
The University of Pennsylvania Cancer Center provides easy access to a wide variety of cancer resources including current clinical trials, financial issues for patients, and more.
Oregon Health Sciences University Center for Ethics in Health Care
The Center for Ethics combines the perspectives of health professionals, patients, and families to improve teaching, research, and clinical consultation about ethical issues in patient care and health policy.
Palliative.info
This site offers an organized, up-to-date collection of links to palliative care resources on the internet, as well as locally developed palliative care materials.
Palliative Care Australia
This site provides a range of information, including general standards for providing palliative care, palliative care for children and teenagers, and palliative care for the aged. It offers free online access to a book called Journeys, which is an excellent resource for families and caregivers about palliative care for children and teenagers.
Palliative Care Journal Club
Browse your favorite journals and view the contents of the latest issue. Articles from Palliative Care journals that may be of particular interest are flagged as Choice, and articles from other journals that are relevant to palliative care are selected by the editors.
PalliativeDrugs.com
The site provides essential independent information for health professionals worldwide about drugs used in palliative and hospice care. The content is based on the UK Palliative Care Formulary (PCF, 3rd edition). This free site requires the user to register. It has a monthly e-newsletter. It is searchable for drugs.
Stoppain.org (Beth Israel Hospital)
Various PowerPoint presentations about pain management, including a script for the presenter, can be downloaded and can be altered to fit specific needs. Numerous online continuing medical education modules are available for physicians and for registered nurses after a quick and free registration process. Some very useful links are also on the Web site, including one to a manual outlining clinical practice guidelines for quality palliative care.
University of Wisconsin Pain and Policy Studies Group
This group studies public policy in relation to pain management and identifies and addresses the barriers to medical use of opioid analgesics.
When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context
www.health.state.ny.us/nysdoh/provider/death.htm
The New York State Task Force on Life and the Law published a 217-page report titled “When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context,” which has been made available electronically.
WHO Europe Better Palliative Care for Older People
www.euro.who.int/document/E82933.pdf
The aim of this booklet is to incorporate palliative care for serious chronic progressive illnesses within ageing policies, and to promote better care toward the end of life.
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