Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

A. Original Tools from this Issue's Contributors:

Mini version of process audit tool: Variance Tracking: PCAD
Marilyn Bookbinder of Beth Israel Medical Center's Department of Pain Medicine and Palliative Care has provided this tool to track variations in practice as nurses implement the PCAD.

B. Websites Related to this Issue's Contributors:

American Hospital Association (AHA)
http://www.aha.org/circleoflife/col_Home.asp
AHA is a key sponsor of the 2001 Circle of Life Award. Visit this site for more information about this year's award and/or to apply for next year's award.

Beth Israel Medical Center’s Stop Pain! Website
http://www.stoppain.org
This is an extensive site, addressing many topics in depth. Find resources for educators, physicians, nurses, patients and caregivers. It highlights Beth Israel’s extensive commitment to supporting patients and their families through the Department of Pain Medicine and Palliative Care. The Palliative Care for Advanced Disease Pathway (PCAD) highlighted in the Featured Innovation, Part II of this issue can be downloaded in pdf format from this site for free. You must register in order to gain access to these tools and instructions for their use. Follow this link to register and for the unit reference manual: http://www.stoppain.org/services_staff/pcad1.html
For further references related to the PCAD, go to http://www.stoppain.org/services_staff/pcad5.html

European Association of Palliative Care (EAPC)
http://www.eapcnet.org/
The EAPC was founded with 40 individual members in 1988. It is now a federation of national and regional societies of palliative care, representing over 25,000 individuals across Europe and other parts of the world. The website at present serves as an information source about the EAPC and its activities including descriptions of publications and congresses. The website also offers a directory of participating organizations around the world including contact names and addresses. Many resources are available in French and English, and congresses offer simultaneous interpretation of all sessions. A number of Innovations' editorial board members play leadership roles in this organization, including Dr. Stein Kaasa who serves as president of the EAPC.

Journal of Pain and Symptom Management
http://www.elsevier.nl/locate/jpainsymman
Edited by Dr. Russell K. Portenoy of Beth Israel Medical Center, Journal of Pain and Symptom Management provides the professional with the results of important new research and clinical information related to pain management and palliative care. The journal boasts an international editorial board including leading researchers and clinicians. Each board member is an active figure in pain or palliative care, and a major contributor to the literature.

Marie Curie Centre Liverpool
http://www.mariecurie.org.uk/
Founded in 1948, Marie Curie Cancer Care is now the UK's largest and most comprehensive cancer care charity. The Marie Curie Nursing Service and Marie Curie Centres (hospices) care for people seriously ill with cancer, while the Marie Curie Research Institute investigates the causes and treatments of cancer.

United Hospital Fund
http://www.uhfnyc.org/
United Hospital Fund is a health services research and philanthropic organization that addresses critical issues affecting hospitals and health care in New York City. UHF originally funded the BIMC effort (see Featured Innovation, Part 1) through its Hospital Palliative Care Initiative, designed to promote better end-of-life care practices in New York City hospitals.

C. Other relevant websites

Australian Department of Veterans' Affairs Community Nursing: Clinical Pathways Manual
http://www.dva.gov.au/health/provider/community%20nursing/pathways/pathindex.htm#pathways
The Australian Department of Veterans' Affairs posts an extensive list of clinical pathways in pdf format at this site. Readers need Adobe Acrobat to access these tools. This series includes a Palliative Care Clinical Pathway dated July 2000.

Center to Advance Palliative Care
http://www.capcmssn.org
Established by The Robert Wood Johnson Foundation to promote wider access to excellent palliative care in hospitals and health systems in the U.S., the Center aims to provide assistance in the planning, development and implementation of hospital and health system based palliative care programs. The site includes a variety of resources and materials.

Center to Improve Care of the Dying
http://www.medicaring.org
The Center to Improve Care of the Dying (CICD) is a unique, interdisciplinary team of committed individuals, engaged in research, public advocacy, and education activities to improve the care of the dying and their families.

Edmonton Palliative Care Program.
http://www.palliative.org/
An extensive palliative care site for both professional and non-professional audiences offered jointly by the Division of Palliative Medicine and Department of Oncology at the University of Alberta in Edmonton, Canada, and The Edmonton Regional Palliative Care Program. The purpose of the site is to acquaint the visitor with the basic philosophy of palliative care, and its workings in centres large or small. Content includes clinical information, patient assessment tools, cancer material, and links to related resources.

Institute for Health Care Improvement (IHI)
http://www.ihi.org
The Institute for Healthcare Improvement (IHI) is a Boston-based, independent, non-profit organization working since 1991 to accelerate improvement in health care systems in the United States, Canada, and Europe by fostering collaboration, rather than competition, among health care organizations. IHI provides bridges connecting people and organizations that are committed to real health care reform and who believe they can accomplish more by working together than they can separately.

International Association for Hospice & Palliative Care (IAHPC)
http://www.hospicecare.com
IAHPC is a nonprofit international organization dedicated to the development and improvement of palliative care worldwide by encouraging countries to develop their own model of palliative care provision and not be expected to copy models more appropriate to affluent countries. IAHPC is currently chaired by Dr. Eduardo Bruera. Readers can join the IAHPC at this website as well as access its many resources. These include: "World Palliative Care Reports," which are short summaries of state of the art palliative care in specific countries, a monthly newsletter, an extensive ethics page, updates on IAHPC activities, and links to key palliative care journals and organizations.

Toolkit of Instruments to Measure End-of-Life Care (TIME)
http://www.chcr.brown.edu/pcoc/toolkit.htm
Dr. Joan Teno has built a "toolkit" which provides a comprehensive list of tools and references, including measurement instruments related to palliative care. This site contains annotated bibliographies of tools for specific domains including: Quality of life, pain and other symptoms, emotional and cognitive symptoms, functional status, survival time and aggressiveness of care, advance care planning, continuity of care, spirituality, grief and bereavement, patient centered reports and rankings (aka statisfaction) with the quality of care and caregiver well-being.