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End-of-Life / Palliative Care

bullet End-of-life issues
bullet Palliative Care

End-of-Life Issues

bullet Ethical Issues at End of Life: MedlnePlus – This NIH site links to journal articles that address ethical issues on end of life.  Also see Death and Dying: MedlinePlus for overview and links to specific conditions, directories, and organizations.

bullet Ethical Issues in End of Life: PubMed – Links to a large number of journal articles. Covers recent literature. Abstracts, summaries and/or full text available.

bullet NIH State-of-the-Science Conference Statement on Improving End-of-Life Care (2004) – This is a statement prepared by an independent panel of health professionals and public representatives on the basis of a systematic literature review, presentations by investigators working in relevant areas, questions and statements from conference attendees, and closed deliberations by the panel. This statement is an independent report of the panel and not a policy statement of the NIH or the Federal Government.

bullet End of Life/Palliative Education Resource Center (EPERC) - Supported by the Robert Wood Johnson Foundation and located at the Medical College of Wisconsin, the EPERC is a central repository for educational materials and information about end of life (EOL) issues.

bullet Open Society Institute Project on Death in America - This site reports on research and education projects on epidemiology, ethnography, history and ethical issues related to dying, bereavement and palliative care.  Funded by The Soros Foundation Network, the project on Death in America ended in 2003 but is continuing in Eastern Europe and in developing countries.  The site links to resources on end-of-life issues including brief summaries of completed grants.

bullet Open Directory: Society: Issues: End-of-Life -  Netscape’s Open Directory Project resource links to books, articles and radio/tv programs.

bullet Ethical Issues in End-of-Life Care - This article reviews the ethical principles that guide medical practice and then focuses on end-of-life ethical issues such as the right to life-sustaining therapy, medical futility, the distinction between killing and allowing to die, and physician-assisted suicide. The same issue of the Cancer Control Journal has a section on end-of-life ethical issues.

bullet British Medical Journal Collections: End-of-Life Decisions - This site links to research articles, news, editorials and analytic articles on end-of-life.

bullet Ethical Issues in End-of-Life Decisions – A slide presentation by Lawrence Hinman, University of San Diego that explores issues surrounding end-of-life care, puts them into a theoretical context, and links to other resources.

bullet Ethics in Medicine – This University of Washington site has links to several topics that deal with end-of-life care, medical futility and death. Scan the index to access them.

bullet End of Life Care: An Ethical Overview  (2005) – A comprehensive document from the University of Minnesota’s Center for Bioethics.

bullet End-of-Life/Palliative Care and Hospice: Caring for the Dying – A  site sponsored by the NY Times company that links to resources about end-of-life directed toward the general public but useful for health professionals as well.  
Special Issue: Ethical Concerns Involving End-of-Life Issues in the United States  (2005) – A special issue of the journal Mortalitiy.

bullet End of Life - Ethical Challenges and Problems (2006) - This publication from the Danish Council of Ethics is focused on ethical challenges and problems at the end of life. It is the translation of three reports previously published in Danish: "Spiritual Care for the Dying", "Treating the Dying - The Difficult Decisions", and "Euthanasia - Legalizing Killing on Request?"

bullet  Advance Planning For End-of-Life Care (2001) – This chapter is the result of a project supported by the Agency for Healthcare Research and Quality on Making Health Care Safer: A Critical Analysis of Patient Safety Practices. It is part of Evidence Report/Technology Assessment 43. Best practices are reviewed and the extent to which they are adhered to is examined. Although the focus of the report of not on ethical issues, many ethical issues are implicit.

bullet End-of-Life Issues and Care – A resource page from the American Psychological Association that links to activities, statements and reports issued by the Association on end-of-life issues.

bullet End-of-Life Care: National Association of Social Workers (2005) – This site includes policy statements, reports and links to resources.

bullet Ethical Considerations in End-of-Life Care and Research (2005) – A study from the J. of Palliative Medicine that discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research.

bullet UK Clinical Ethics Network -  This site provides information and support to the UK health service clinical ethics committees. In the end-of-life area, the site links to British policies and guidelines, case studies, issues that relate to withdrawal of treatment, advance directives, and DNR orders, professional guidelines and readings for patients.

bullet End-of-Life/Care of the Dying – This site links links to Canadian policies on euthanasia and assisted suicide and to other links about end-of-life issues.

bullet International Observatory on End-of-Life Care – Public health and policy data on end-of-life and palliative care in the international context. The data are presented in an ethical framework. Data are complemented by material drawn from the social and cultural analysis of end of life issues, including ethnographic, historical and ethical perspectives. Data are presented for countries in Eastern Europe, Central Asia, Africa, South America and the Middle East in ways which facilitate cross-national and regional comparison and analysis. The site is compiled and maintained by a group at Lancaster University, UK.

bullet Ethical Issues in Emergency Department Care at the End of Life  (2005) – A policy statement from the American College of Emergency Physicians.

bullet Hospice Foundation of America:  Living with Grief: Ethical Dilemmas and End-of-Life Care – Links to resources from a spiritual and cultural perspective, ethical issues, and case studies on end-of-life.

bullet Endlink -- Resource for End of Life Care Education – This site from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University has more than a dozen modules relating to end-of-life issues that include basic concepts, information, skill and techniques and links to resources.

bullet Approaching Death: Improving Care at the End of Life (1997) – A report from the Institute of Medicine, Committee on Care at the End of Life.

bullet When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (2003) – This report from the Committee on Palliative and End-of-Life Care for Children and Their Families, Institute of Medicine includes a chapter on ethical and legal issues associated with children’s death.

bullet Death, Dying, and Advance Directives in Japan: Socio-Cultural and Legal Point of View – This site offers insights into the Japanese traditional and cultural acceptance of death and on use of advance directives in Japan.

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Pain and Palliative Care

bullet  National Institutes of Health Pain Consortium – The consortium was established to enhance pain research and promote collaboration among researchers across NIH Institutes and Centers that have programs and activities addressing pain.

bullet Pain: MedlinePlus – This NIH page provides links to directories, overviews, specific conditions, resources for pain management, and organizations.

bullet Pain and Palliative Care – Links to resources on pain and palliative care from the American Journal of Bioethics and

National Hospice and Palliative Care Organization – This is the site of a nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. It links to information about advance directives, legal issues, care resources, and many advocacy and consumer organizations.

bullet Medical College of Wisconsin Palliative Medicine Program – The site includes educational and clinical care resources related to end-of-life. It also links to journals and both academic and service organizations.

bullet National Library for Health Palliative and Supportive Care Specialist Library – A resource of links to literature on health topics including ethics and law related to palliative and supportive care.

bullet  The Cochrane Pain, Palliative Care and Supportive Care Collaborative Review Group – The Group focuses on reviews for the prevention and treatment of pain; the treatment of symptoms at the end of life; and supporting patients, care givers and their families through the disease process. The site links to systemic reviews of randomized controlled trials of interventions concerned with pain and palliative care.

bullet Center to Advance Palliative Care - A national initiative supported by the Robert Wood Johnson Foundation and Mount Sinai School of Medicine. The mission of the Center is to increase the availability of palliative care services.

bullet Ethics Videos Catalogue: Bioethics – The University of San Diego site links to several videos related to end-of-life and palliative care. See Physician Assisted Dying: Pro and Con, Medical Ethics and the Humanities in End-of-Life Care and also other relevant videos from the catalogue.

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Last updated: 5/19/11 9:13 AM