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

A.  Tools Related to this Issue’s Contributors:

Edmonton Palliative Care Program
http://www.palliative.org/
The Clinical Assessment page http://www.palliative.org/pc_assess.html lists the Edmonton Program's most useful tools with hotlinks to each. Readers can access the Edmonton Symptom Assessment System (ESAS)—both the numerical and visual analogue versions and a graph for tracking changes in scores over time; and the Edmonton Comfort Assessment Form (ECAF), a tool for caregivers to complete when patients are unable to complete the ESAS themselves, and other tools. (The ECAF was previously known as the Edmonton Discomfort Assessment Form.) The Edmonton Palliative Care Program site is organized for both professional and non-professional audiences, offered by the Division of Palliative Medicine, Department of Oncology, University of Alberta, Edmonton, Canada and The Edmonton Regional Palliative Care Program. Content includes clinical information, patient assessment tools, cancer material, and links to related resources.

B.  Websites related to this issue's contributors:

1. European Association for Palliative Care
   http://www.eapcnet.org
   Founded with 40 individual members in 1988, the EAPC is now a federation of national and regional societies of palliative care representing more than 25,000 individuals across Europe and other parts of the world. This website includes information about the EAPC and its activities with details about publications and congresses, and a directory of participating organizations with contact names and addresses. The EAPC is sponsoring two upcoming international congresses: Research and Development in Palliative Care: 1^st Conference of the EAPC Research Network in Berlin, December, 2000 and the 7^th EAPC Congress in Palermo, Italy in April 2001. Many resources are available in French and English. Professor Vittorio Ventafridda is one of the founders of this organization. A number of Innovations editorial board members play leadership roles in this organization, including Stein Kaasa, MD, PhD, who serves as president of the EAPC.

2. 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 come up with their own models of palliative care provision. IAHPC is currently chaired by Dr. Eduardo Bruera, founder of the Edmonton Program. The October 2000 issue of the IAHPC newsletter includes "The Palliative Medicine Argentine Program-FEMEBA" by Dr. Roberto Wenk, Dr. Mariela Bertolino & Dr. Jorge Ochoa at http://www.hospicecare.com/Newsletters/october2000/page4.html

C.  Other relevant websites:

1. Dying Well - Dr. Ira Byock's Website
   http://www.dyingwell.com
   Dr. Ira Byock, past president of the American Academy of Hospice and Palliative Medicine, provides written resources and referrals for patients and families facing life-limiting illness and their professional caregivers. You may find the Missoula-Vitas Quality of Life Index, a measurement tool for assessing quality of life during the final stages of terminal illness, at http://www.dyingwell.com/MVQOLI.htm

2. Quality of Life Assessment in Medicine
   http://www.glamm.com/ql/
   Dr. Marcello Tamburini's multilingual site has a search engine to access more than 803 quality of life instruments applicable across the lifespan. Contact information and articles about the Hospice Quality of Life Index (HQLI) are available at this site.

3. 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, including a substantial section on quality of life instruments at http://www.chcr.brown.edu/pcoc/Quality.htm