The Washington Home Center for Palliative Care Studies (CPCS)
Formerly known as the Rand Center To Improve Care Of The Dying (CICD), the new CPCS web site continues to be one of the world's leading sources for quality improvement research and consulting. The CPCS team has worked with hundreds of health care organizations to mount effective change. The web site provides educational content on quality measurement, improvement methodology, case studies, and policy analysis. CPCS has summarized its core methodology for making change happen in "Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians." You can read online extracts from this manual for quality improvement. Center Director Joanne Lynn, M.D., a leading authority in the effort to improve the quality of terminal care, was Co-Director of the $28 million SUPPORT study which drew attention to many problems in end-of-life care. CICD is a member of the Inter-Institutional Collaborating Network on End-of-life Care. You can search the IICN Public Library from this site.

Symptom Management Algorithms For Palliative Care
By Linda D. Seaman. This technical resource for palliative care professionals presents decision algorithms for assessment and management of pain and common symptoms in terminal illness. Includes material on appetite problems and their relation to palliative nutrition. The author is the Medical Director for Providence Hospice of Yakima Washington.

Fast Facts
This Growth House feature presents the EPERC Fast Facts series in online web tutorial form. Developed in partnership with the End of Life Physician Education Resource Center (EPERC). Fast Facts is a collection of quick tutorials on common issues in palliative care. Intended for use by health care professionals, they can also be read with benefit by the general public. Issues covered include pain management, symptom management, tube feeding, withdrawl of treatment, and other important subjects.

End of Life Physician Education Resource Center (EPERC)
EPERC provides a central repository for physician education materials related to end-of-life care. The EPERC staff identify and help disseminate high-quality, peer-reviewed training resources, publications, conferences, and other educational materials from many sources. Groups which have developed training materials may submit them to EPERC for review and inclusion in their central directory. EPERC is a source for the popular "Fast Facts" education series. EPERC is located at the Medical College of Wisconsin. EPERC is a member of the Inter-Institutional Collaborating Network On End-of-life Care (IICN).

Toolkit for Developing Outpatient Palliative Care Services
The online version of the TriCentral Palliative Care Program Toolkit gives you a step-by-step guide on how you can create an innovative outpatient palliative care program within your own healthcare institution. The toolkit provides a "blueprint" based on the Kaiser Permanente TriCentral Service Palliative Care Program (TCPC). It includes guidelines for modifying the program to fit your organization's structure and to meet the needs of patients in your local community. You can download a printable version of this guide.

Hospice and Palliative Care: Concepts and Practice, Second Edition
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.

Population-based Palliative Care Research Network
The Population-based Palliative Care Research Network (PoPCRN) is committed to improving care to persons at the end of life by conducting rigorous, high-quality end-of-life research in settings where palliative care is provided. PoPCRN is based at the University of Colorado Health Sciences Center in Denver, Colorado. You can search the IICN Public Library from this site.

National Council For Palliative Care
The Council is the representative and coordinating body for all those working in hospice and specialist palliative care in England, Wales, and Northern Ireland. Website provides information on a number of publications on hospice care intended both for the general public and for professional care providers. You can search the Growth House database from this site.

The Primer Of Palliative Care
By Porter Storey. A concise and inexpensive overview of hospice and palliative care issues suitable for a general audience. This widely-used booklet is published by the American Academy Of Hospice And Palliative Medicine, an international professional organization for physicians involved with care for those who are dying and their loved ones. Includes material on nutrition in terminal care. Published July, 1994.

Hospice and Palliative Care Handbook: Quality, Compliance, and Reimbursement
By T. M. Marrelli, Fred F. Ferri. An excellent reference book for hospice administrators and palliative care providers. For each of the hospice-related clinical problems presented, the handbook offers detailed standards and documentation guidelines including ICD-9 (diagnostic) codes, NANDA-approved nursing diagnoses, service skills, including the skills of the interdisciplinary hospice care team, outcomes and goals, and specific tips for safety, reimbursement and quality. This compact, easy-to-use handbook offers clinicians complete coverage of all hospice-related conditions with practical and specific guidance for hospice care and documentation. It takes the guesswork out of hospice goals, interventions, and outcomes. Published 1999.

Oxford Textbook Of Palliative Medicine (Second Edition)
Edited by Derek Doyle, Geoffrey Hanke, and Neil MacDonald. The second edition of "the Bible of palliative care" is a comprehensive medical textbook and reference volume covering most practical aspects of hospice comfort care for the terminally ill. Covers quality of life assessment, pain and symptom management, pediatric issues, nutrition, psychiatric issues, special roles of members of the caregiving team such as nurses, occupational therapists, and social workers, plus many other topics. Now available in paperback. Published April, 1999.

European Association for Palliative Care (EAPC)
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.

Canadian Hospice Palliative Care Association (CHPCA)
CHPCA is a non-profit membership association comprised of individuals and organizations across Canada. CHPCA is providing leadership through the development of national standards for palliative care. Web site is bilingual in French and English. It offers a bi-annual conference which brings together representatives from all parts of Canada. Web site has a directory of information on hospice and palliative care services across Canada.

Care of the Dying Child
A concise reference text for pediatricians, palliative care physicians, and other health care professionals working with terminally ill children and their families. Compiled by The Hospital for Sick Children, London, U.K., one of the world's best known pediatric hospice services. Twelve U.K. contributors cover medical, psychological, and practical issues in caring for dying children, with a focus on progressive chronic illness. Edited by Ann Goldman. Published 1994.

Harvard Medical School Program in Palliative Care Education and Practice
An intensive course for medical and nursing educators.

New Mexico Palliative Care System
A network of seven rural hospice programs in New Mexico, including the Indian Health Service. The network is based at the Cancer Center at the University of New Mexico. You can search the IICN Public Library from this site.

Edmonton Palliative Care Program
Palliative care site offered by the Division of Palliative Medicine, Department of Oncology, University of Alberta, Edmonton, Canada and The Edmonton Regional Palliative Care Program. Sections of the site address the needs of both professional and non-professional audiences. Content includes clinical information, patient assessment tools, cancer material, pain assessment tools such as the Edmonton Staging System for Cancer Pain, and links to related resources.

British Columbia Hospice Palliative Care Association
BCHPCA strives to provide a leadership and coordinating role for its Canadian member organizations and individuals to ensure quality of care for British Columbians living with a life-threatening illness.

Hospice and Palliative Care
By Virginia F. Sendor and Patrice M. O'Connor. In an accessible question and answer format, the authors explain what hospice and palliative care is, describe the services offered to both patient and family (including children), discuss admission requirements, Medicare coverage, reimbursement issues, the resources available to patient and family, and how to locate these resources in the United States. Written with the patient and the patient's family in mind, this book is also a valuable resource for social workers, medical and nursing students, and health care professionals. Includes special sections on AIDS, Alzheimer's disease, advance directives, bereavement, the role of the physician, the role of volunteers, the concept of informed consent, and euthanasia. Published July 1997.

The American Academy Of Hospice And Palliative Medicine
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.

Toolkit of Instruments to Measure End of Life Care
Joan Teno, of the Center for Gerontology and Health Care Research at Brown University, and faculty and staff at the Center to Improve Care of the Dying, have assembled a comprehensive annotated bibliography of instruments to measure factors important to quality of care at the end of life. Instruments cover general quality of life, functional status, pain and physical symptoms, depression and other emotional states, survival time, appropriateness of aggressive care, cognitive status, advance care planning, spiritual well-being, system performance for end-of-life care, caregiver burden, grief, family satisfaction with care, and other factors. You can search the Growth House database from this site.

Australian and New Zealand Society of Palliative Medicine
ANZSPM is a society of physicians who are united by their interest in the medical challenges of caring for patients and their carers referred for palliative care. Web site includes information about the organization, a newsletter, links to related resources, and educational content including a complete model undergraduate curriculum for palliative care teaching in Australian and New Zealand medical schools. You can search the Growth House database from this site.

Palliative Care Council Of South Australia, Inc.
A regional professional organization with over 500 members. Website includes a calendar of upcoming events and referrals to hospice, palliative care, and domiciliary nursing services throughout the region. Specialized content includes Multicultural Palliative Care Guidelines for working with Non English Speaking Background (NESB) groups. The online guide has practice guidelines and specific recommendations for the following language groups which were chosen based on prevalence in the Australian 1996 Census: Arabic, Bosnian, Chinese, Croatian, Greek, Hindi, Italian, Japanese, Khmer, Korean, Macedonian, Maltese, Persian, Polish, Portuguese, Russian, Serbian, Spanish, Turkish, and Vietnamese. You can search the Growth House database from this site.

Palliative Care Victoria
The Victorian Association for Hospice and Palliative Care (VAHPC) is a professional society representing these services in the state of Victoria, Australia. Website includes referrals to hospice, palliative care, and domiciliary nursing services throughout the state, including Metro Melbourne. Specialized content includes Multicultural Palliative Care Guidelines for working with Non English Speaking Background (NESB) groups. The online guide has practice guidelines and specific recommendations for the following language groups which were chosen based on prevalence in the Australian 1996 Census: Arabic, Bosnian, Chinese, Croatian, Greek, Hindi, Italian, Japanese, Khmer, Korean, Macedonian, Maltese, Persian, Polish, Portuguese, Russian, Serbian, Spanish, Turkish, and Vietnamese.

Brisbane Palliative Care
Brisbane Palliative Care (VAHPC) is a professional society representing these services in the greater Brisbane area, Australia. Website includes referrals to hospice and palliative care care resources in Australia.

New Themes In Palliative Care
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.

Center to Advance Palliative Care (CAPC)
CAPC is a national center in the United States that provides assistance in the planning, development, and implementation of hospital- and health-system based palliative care programs. It disseminates information on national trends in palliative care practice and delivery and encourages development of new mechanisms for financing palliative care services. Web site has information on how to establish a palliative care program, background on Medicare payment mechanisms for palliative care services, and details on other CAPC products and services.

Hospice and Palliative Nurses Association (HPNA)
Promotes excellence in hospice nursing. Website includes information on how to become a Certified Registerd Nurse Hospice (CRNH), useful training publications to prepare for the national certification board examinations, and links to related resources.

Ottawa Regional Palliative Care Center
With 38 acute and long-term palliative care beds, approximately 800 applications and 413 admissions per year, an in-hospital consultation service, and active community links, the Ottawa Regional Palliative Care Centre (ORPCC) is one of the largest palliative care centres of its kind in Canada. Based at the Sisters of Charity of Ottawa Health Service (SCOHS) in Ottawa, Canada, palliative care services at the ORPCC are divided between the acute unit (Vanier Unit) for the management of complex symptoms of terminal illness and the long term unit (LeBlanc Unit) for longer stays and an enhanced focus on rehabilitation. As a principal teaching site for the University of Ottawa Institute of Palliative Care, the ORPCC's clinical services are fully integrated with the academic mandate of the Institute and the University of Ottawa. The web site is bilingual in English and French.

British Medical Journal: Palliative Medicine
This section of the eBMJ site provides a quick index of abstracts to recent BMJ articles pertaining to palliative medicine and related topics in end of life care, with full text of some articles. Also allows you to review the online palliative medicine collections from some other journals. The no-frills design plus top-notch content make this literature awareness site a winner for palliative care professionals and hospice staff who want to track several important journals from a single place.

Palliative Care Australia
A national Australian professional organization. Website includes a directory of Australian palliative care services.

Topics In Palliative Care
Eduardo Bruera and Russell K. Portenoy, Editors. Each chapter of these medical reference texts covers a specialized aspect of palliative care for the terminally ill in an authoritative manner. These items should be part of any standard reference library for palliative medicine. Volume One published March, 1997; Volume Two published May, 1998.

Council On Palliative Care (Montreal)
The Council was established in 1994 in Montreal, Canada. Includes general information about palliative care, resources in Montreal, and links to related web sites. Site is bilingual in English and French.

Palliatieve Zorg
A site covering palliative care issues in Dutch, with links to related resources.

By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Water
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.

HOSPIC-L Hospice Care Discussion Group
HOSPIC-L is an email discussion list for hospice and palliative care professionals, with an associated message archive. It's an excellent source for commentary on news and issues which affect hospice care and gives hospice workers a way to ask operational questions. To subscribe send an email message to listserv@listserv.acsu.buffalo.edu with the command subscribe hospic-l in the body of the message.

Forgoing Life-Sustaining Therapy
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.

Hospice Care for Patients With Advanced Progressive Dementia
By Ladislav Volicer (Editor), Ann Hurley (Editor). An outstanding technical reference with contributions from twenty-seven specialists who cover a range of issues in care of patients with severe and terminal dementia. There is no cure for the progressive dementias and the afflicted person can live for from two to twenty years (average is eight).

Nutritional Care Of The Terminally Ill
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
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.

Coma and Impaired Consciousness: A Clinical Perspective
By G. Bryan Young (Editor), Allan H. Ropper (Editor), Charles Bolton (Editor). This comprehensive text examines every aspect of coma, including related anatomy, physiology, neurochemistry, pharmacology, new diagnostic and therapeutic approaches, prognostic factors, and decision algorithms for clinical management. Throughout, the emphasis is on practical approaches to monitoring and management of coma and the special needs of comatose patients. Published April, 1998.

American Society For Parenteral and Enteral Nutrition (ASPEN)
A professional membership organization for physicians, nurses, dieticians, pharmacists, and other allied health care professionals involved with the provision of clinical nutrition therapies. The organization works to ensure that every patient receives optimal nutritional care. Web site has information and links related to artificial feeding and hydration. An extensive line of publications include clinical practice guidelines, nutrition support clinical pathways, patient education resources, and two professional journals. Also offers an electronic mailing list.

Sociedad Espanola de Cuidados Paliativos (SECPAL)
SECPAL is the national professional organization for palliative care in Spain. Website is in Spanish and includes information about regional services as well as international links.

Association for Palliative Medicine
This web site has been established by the Association for Palliative Medicine of Great Britain and Ireland to develop and integrate new technologies into palliative care.

Palliative Care Distance Education
Grant MacEwan Community College in Edmonton, Alberta, Canada offers training in end of life care via print-based distance education and two Internet-based courses. Their Palliative Care Post Diploma Certificate Program for professional health caregivers covers the skills for providing quality care for the terminally ill in either an institutional or home care setting. Their Compassionate Care for the Terminally Ill Certificate Program consists of four non-credit courses designed to provide knowledge and skills for people who are caring for the terminally ill in an institutional or home setting. These courses are appropriate for pastoral care providers, human service workers, homemakers, and the families of patients receiving palliative care.

European Journal Of Palliative Care
The official journal of the European Association for Palliative Care. Web site provides short summaries of published articles.

Journal Of Palliative Medicine
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.

Developing Palliative Care Services for Terminally Ill Patients in Saudi Arabia
This article looks at the experience of King Faisal Specialist Hospital and Research Centre in developing a palliative care service for the terminally ill since 1989. 90% to 95% of the patients in this program have cancer. Many of the problems encountered in developing the program are common to palliative care efforts in other parts of the world.

University of Toronto Joint Centre for Bioethics
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.

Ethos Consulting Group
Ethos Consulting Group provides consulting services for healthcare organizations and hospitals wanting to integrate hospice and palliative care into their operations. You can search the IICN Public Library from this site.

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