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* Hospice and Home Care
Hospice and Palliative Care Resources [icon]
Hospice, palliative care, and ethics resources provided by the University at Buffalo Center For Clinical Ethics. You can search the Growth House database from this site.

* Palliative Medicine
Hospice and Palliative Care: Concepts and Practice, Second Edition [icon]
By Walter B. Forman (Editor), Denice C. Sheehan, Robert P. Anderson. This book for health care professionals offers both theoretical perspectives and practical information. In the first part the authors present a historical overview of hospice and explain how the interdisciplinary team functions in the hospice setting. In the second part the authors discuss challenges to the team including symptom management, death education, ethical issues, and support groups. The future of hospice is addressed in the final part. Useful specialized topics include program management, eligibility and reimbursement, and cultural concerns. The contributors are leaders in community medical care, geriatric care, nursing care, pain management, research, counseling, and hospice management. An excellent choice for medical students, nursing students, or any professional working with seriously ill clients where hospice care may be an appropriate care option. Published May 2003.

European Association for Palliative Care (EAPC) [icon]
EAPC is a federation of national and regional palliative care organizations representing over 25,000 individuals across Europe. EAPC works to encourage information interchange in the areas of research, ethics, health policy, and education. Publications include the EAPC Journal, the EAPC Newsletter, and specialized items on palliative care, pain management, opiods, bowel obstruction, artificial hydration and nutrition, cancer, and other topics in several languages including English, German, French, Russian, and Italian. Their website includes links to related resources.

The American Academy Of Hospice And Palliative Medicine [icon]
An international membership organization of physicians dedicated to the advancement of hospice and palliative medicine in the care of the terminally ill. Web site includes information on events and meetings, certification in hospice and palliative care, and a link list. Offers a series of "UNIPAC" self-training modules for physicians who care for terminally ill patients and their families. The UNIPACs offer practical information and suggested interventions related to clinical situations, pain and symptom management, nutrition, ethical issues in withdrawing life-sustaining treatment, and legal matters in terminal care. The UNIPACs are approved for 3 credit hours of CME each. You can search the Growth House database from this site. AAHPM is a member of the Inter-Institutional Collaborating Network On End Of Life Care (IICN) which links major palliative care organizations internationally.

New Themes In Palliative Care [icon]
David Clark, Jo Hockley, Sam Ahmedzai (Editors). A compilation of essays on key themes in palliative care, intended for a professional audience. The book has a multidisciplinary, international perspective. Sections cover policy, ethics, service developments, and clinical issues. Published September, 1997.

By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Water [icon]
Joanne Lynn M.D., Editor. Intended for a professional palliative care audience, this book examines the medical ethics associated with nutritional care of the terminally ill and the difficult questions surrounding withdrawing life-sustaining treatment. The New England Journal of Medicine describes it as "...thoughtfully written ...well-edited, cohesively integrated... valuable for physicians, nurses, nutritionists, attorneys, members of the clergy... and the general public." Published 1990.

Forgoing Life-Sustaining Therapy [icon]
By Margaret L. Campbell, RN, MSN, CS. Foreword by Joanne Lynn MD, MA, MS. Forgoing life-sustaining treatment can be one of the most difficult aspects of care for the dying. This concise and practical book is written for clinical care providers such as nurses and physicians. It gives sensible guidance on tough issues such as how to stop a ventilator, the use of artificial nutrition and hydration, forgoing dialysis, and management of delirium in the final days of life. Illuminating case examples draw out important clinical aspects of care while addressing ethical and legal considerations and the processes of communication and decision making. This authoritative medical resource dispels common myths about forgoing treatment, offers historical background on right-to-die cases, and provides definitions and discussions of ethical principles.

Nutritional Care Of The Terminally Ill [icon]
By Charlette R. Gallagher-Allred. A professional book for use by dieticians working in hospice and palliative care settings. Addresses needs, strategies, and ethics for feeding and palliative hydration. This is an update to the author's 1989 reference work on the same topic. Published January, 1997.

Nutritional Care Of The Terminally Ill [icon]
By Charlette R. Gallagher-Allred. A professional book for use by dieticians working in hospice and palliative care settings. Addresses needs, strategies, and ethics for feeding and palliative hydration. Published 1989.

Journal Of Palliative Medicine [icon]
This bimonthly interdisciplinary Journal reports on the clinical, educational, legal and ethical aspects of care for seriously ill and dying patients. It includes coverage of the latest developments in drug and non-drug treatments for patients with life-threatening diseases.

University of Toronto Joint Centre for Bioethics [icon]
The University of Toronto Joint Centre for Bioethics is a partnership among the University of Toronto, Baycrest Centre for Geriatric Care, Centre for Addiction and Mental Health, The Hospital for Sick Children, Mount Sinai Hospital, Sunnybrook and Women's College Health Sciences Centre, The Toronto Hospital/Princess Margaret Hospital, and Toronto Rehabilitation Institute. Their mission is to provide leadership in bioethics research, education, and clinical activities. Recently, the Centre established a new End-of-Life section on its web site. Although still new and fairly modest, the section includes hyperlinks to other sources of end-of-life information on the web. It also includes the full text of important documents on end-of-life care including publications by Faculty of the centre.

* Death With Dignity
Long Goodbye: The Deaths Of Nancy Cruzan [icon]
By Bill Colby. Author Bill Colby was the lawyer for the family of Nancy Cruzan, the only right-to-die case ever to come before the U.S. Supreme Court. Written with the drive of a novel, this absorbing memoir is a page-turner that lets us follow the Cruzan family during their agonizing struggle with removal of a feeding tube for their permanently-comatose daughter. Colby's clear narrative gives a no-nonsense introduction to troubling ethical questions of brain death, artificial nutrition and hydration, and medical interventions that can prolong physical existence long after the mind is gone. New paperback edition includes a discussion guide on advance care planning suitable for use in book clubs. Published 2002.

Center for Clinical Ethics and Humanities in Health Care [icon]
This interdisciplinary academic center of the University at Buffalo addresses many end of life issues and publishes the Bioethics Bulletin, which is also availble by email. Website includes resources for medical ethics, the rights of dying people and their caregivers, advance directives, hospice care, palliative care, confidentiality and medical record privacy resources, and many links to other medical ethics websites. Includes some good specialized clinical material, including a protocol for rapid extubation of patients. You can search the Growth House database directly from this site.

Before I Die [icon]
This PBS television website explores the medical, ethical, and social issues surrounding end-of-life care in the United States. Site explains the national "Before I Die" discussion group project, which uses videos of the 1997 TV program and an associated videoconference to raise public awareness of end of life issues. Site has an excellent, well-chosen link list covering major issues in end of life care such as use of durable power of attorney.

U.S. Supreme Court Decision On Physician-Assisted Suicide [icon]
Overview of the 1997 Supreme Court death with dignity decision and hyperlinks to related legal materials, including the complete texts of the Supreme Court final decisions and many amici briefs.

Practical Issues in Physician-Assisted Suicide [icon]
Annals of Internal Medicine, 15 January 1997. 126:146-151. Reviews medical issues and literature related to patient motivation and mental state when requesting euthanasia, and the physician-patient ethical issues involved.

* Quality Improvement For End Of Life Care
Evaluating Palliative Care [icon]
By Margaret Robbins. This book gives a thoughtful overview of problems associated with evaluation of palliative care services, with a review of prior evaluations done in the United Kingdom, the United States, Canada, Australia, New Zealand, and other countries. This will be a valuable book for researchers, administrators, public policy analysts, and others concerned with establishing an evidence base for palliative care funding. The author addresses ethical and practical issues in research with terminally ill subjects. Published June, 1998.

American Society of Law, Medicine, and Ethics [icon]
This membership society publishes two peer-reviewed journals, The Journal of Law, Medicine and Ethics and The American Journal of Law and Medicine. Web site includes news and research on legal issues in medicine and medical ethics, pain management, and pain undertreatment. Their Project On Legal Constraints On Effective Pain Relief is supported by the Mayday Fund. Their Donaghue Connecticut State-Wide Pain Initiative is supported by the Donaghue Medical Research Foundation.

University Of Washington School Of Medicine: Ethics In Medicine [icon]
Clean site design plus great content make this site a "must see" for terminal care medical professionals. The site supports the Bioethics Education Project at the University Of Washington School Of Medicine. Authoritative content modules cover proper use of advance directives, do not resuscitate orders (DNRs), breaking bad news, complementary medicine, informed consent, legal issues, termination of life-sustaining treatment (including food and fluids), and much more. Bioethics tools are included, showing various concepts and methodologies for decisionmaking in medical settings. Realistic case analysis examples show how concepts translate into typical clinical settings. Offers a Bioethics Discussion Forum (user registration required for this feature). Provides links to other bioethics websites.

* Professional Thanatology Resources
The Accuracy of Substituted Judgments in Patients with Terminal Diagnoses [icon]
Patients' loved ones often make end-of-life treatment decisions, but the accuracy of their substituted judgments and the factors associated with accuracy are poorly understood. This Annals of Internal Medicine article assesses the accuracy of surrogate decision making for terminally ill patients in three university hospitals in the United States. Interestingly, use of advance directives was not associated with accuracy. (Annals of Internal Medicine, 15 April 1998. 128:621-629)

* AIDS: General Resources
HIV InSite [icon]
A collection of high-quality resources. Covers medical information, prevention and education, social issues, and community and research resources. Has a searchable database of HIV clinical trials in the United States. Offers free searches of the National Library of Medicine's AIDSLINE and BIOETHICSLINE databases. Republishes the day's top HIV/AIDS related news stories from the Centers for Disease Control in a searchable database format. Offers free home pages for AIDS agencies.

* Estate Planning and Viatical Settlements
The Viatical Association Of America [icon]
A tax exempt trade association for viatical settlement brokers and viatical funding companies. Web site includes information about the industry, tax laws, business ethics, and related material. VAA members pledge to comply with an industry Code of Ethics as well as all applicable laws. Site includes links to member companies.

* Miscellaneous Resources
Washington Post: Life and Death Battle Plays Out In Virginia [icon]
A September 9, 1998, story on the difficult choices that familes face when confronted with persistent vegetative state situations. The story details the ethical dilemma faced by the Finn family of Virginia, which became embroiled in a legal battle over removal of father Hugh Finn's feeding tube. The story makes a strong case for documenting preferences for end of life care through the use of advance directives.

American Telemedicine Association [icon]
A membership organization that promotes professional and ethical practices in health care delivery through the application of telecommunications technology. Site includes a newsroom, an online bookstore and links to related telemedicine sites.

Association of Professional Chaplains (APC) [icon]
An interfaith association of professional pastoral care providers endorsed by faith groups to serve persons in physical, mental, or spiritual need in diverse settings. This organization was formed by the merger of the Association of Mental Health Clergy with the College of Chaplains, forming a new organization with a distinguished history. The Association promotes excellence in pastoral care through education, research, standards of care, certification, and support of members. The APC code of ethics states that its certified chaplains will support patients on their own faith journeys rather than imposing specific religious traditions or proselytize. This approach meets Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) guidelines for the delivery of spiritual care.

When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context [icon]
This report by the New York State Department of Health covers legal and ethical issues in end of life care with specific attention to policy issues in that state. The report seeks to clarify important considerations for do-not resusitate orders (DNRs), withdrawl of life-sustaining treatment, advance treatment instructions, and related matters. Content includes statistics on the epidemiology of suicide and discussion of suicide among special patient populations. The report was authored by the Task Force On Life and the Law, a state group convened by Governor Mario Cuomo in 1984.

Ethical Patient Care: A Casebook for Geriatric Health Care Teams [icon]
Edited by Mathy D. Mezey, et al. The authors use the case study method to explore ethical dilemmas that members of multidisciplinary teams can face when working with geriatric patients. The delivery of good care often involves professionals from various disciplines working together. Interdisciplinary teams are standard in hospice care, and can be of value in the management of any patients with complex medical and social needs. Such teams, however, can also encounter problems because of their diverse views and professional responsibilities. This book is specifically designed to teach effective and responsible group decision making to clinicians working in teams to treat older patients. Published February 2002.

Initiative to Improve Palliative Care for African-Americans [icon]
The Initiative to Improve Palliative Care for African-Americans (IIPCA) was formed to define and promote a research, education, and policy agenda for the improvement of care for African-American patients facing serious illness.

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