International Association for Hospice and Palliative Care Subject: IAHPC Newsroom 2006; Volume 7, No 1, January William Farr, PhD, MD International Association of Hospice and Palliative Care (IAHPC) This issue of the IAHPC newsletter is now on our website at URL: To send an email to one of the IAHPC Newsletter team members, Please click on the title of any article to view the full article.
Regards, Message from the Chair and Executive Director Kathleen M. Foley, MD (USA) Dear readers: The six newly elected board members are: If you want to learn more about the individuals on the IAHPC Board of Directors, click on http://www.hospicecare.com/Organisation/Org.htm#BOARD Second, during the past few days we have received several requests from members who are asking for an extension of the nomination process for the IAHPC recognition awards. Due to the busy holiday season, we have decided to extend the deadline for applications to January 15th in order to give our members the opportunity to nominate programs and individuals for the Awards. The IAHPC Recognition Awards in hospice and palliative care are given in three categories: 1)The Vittorio Ventafridda Award (for individuals), 2) Institutions and 3) Universities. If you know of a person, a university or an institution that you would like to nominate for one of these awards, please visit our Annual Recognition Awards page in our website at http://www.hospicecare.com/Awards/ Nominators must be IAHPC members. Prizes are $2,000.00 (two thousand US dollars) for each award. Third, the end of the year also marks the expiration of the IAHPC membership for many of you. Individuals whose membership is about to expire should have received reminders by mail. If your membership expired and you have not renewed, please remember to do so. Membership dues are very important to IAHPC because they help us to continue our mission to help others. To renew your membership, please go to our website at www.hospicecare.com and click on the IAHPC Membership Join/Renew button in the links on the left. Kathy Foley, MD ~~~~~~~~~~~~~~~~~~~~~~~~~ Carla Ripamonti, MD Prognostic factors in advanced cancer patients: evidence-based clinical recommendations- A study by the Steering Committee of the European Association for Palliative Care Author(s): Maltoni M, Caraceni A, Brunelli C, Broeckaert B, Christakis N, Eychmueller S et al. In advanced/terminal cancer patients, the study of prognostic indicators of survival has become more and more frequent in the international literature. The aims of such studies are to 1. Identify the indicators of the patients’ length of survival in order to avoid over or under treatments 2. Plan specific care strategies as to the best caresettings and 3. Improve patient care from social, emotional and spiritual points of view. A Working Group of the Research Network of the European Association for Palliative Care ( EAPC ) carried out a systematic literature search of the prognostic factors of patients with advanced cancer who had a survival ≤ 90 days. They identified four areas of interest: 1.Clinical prediction of survival (CPS), 2. Biologic factors, 3. Clinical signs and symptoms and psychosocial variables, and 4. Prognostic scores. The aim of the study was to produce evidence-based clinical recommendations concerning the prognosis in patients with advanced cancer. The type and the quality of the studies were considered in order to classify their level of evidence. Thirty-eight studies fit the quality criteria for study evaluation – 1) there was a prospective study, 2) well-defined cohort of patients as well as well-defined and measured prognostic variables, 3) random patient selection, 4) ≤ 20% of the patients lost to follow-up, 5) the ratio between the number of deaths and the number of potential predictors ≥ 10, and 6) a reliable measurement of outcome. The recommendations of the authors on evidenced-based prognostic factors in advanced cancer patients can be summarized by the following 6 points:
Why I Chose this article I have chosen this article because it is a contribution to the literature with evidence-based clinical recommendations on prognostic indicators of survival in advanced cancer patients. The studies on prognostic indicators of survival should have the aim to help patients, families and caregivers in the decision-making process and in the improvement in patient care. However, there are no studies showing that these objectives are reached through the knowledge of the prognostic factors. This should be the aim of the future research on this topic. Happy New Year Carla Ripamonti, MD Please visit the following link to read past Articles Of The Month: ~~~~~~~~~~~~~~~~~~~~~~~ Traveling Scholar’s Report - Romania Meeting a hospital based palliative care team in the University Clinic of Navarra By Dana Oana Donea, MD In Bucharest , two new palliative care projects are starting as hospital based teams. One starts now and is for adults, and the other is for children and will begin one month later. In order to avoid making mistakes during this pilot project, a good orientation was necessary. I chose to make a two week visit to an established team in order to learn of their experiences and mistakes. In November, 2005 I visited the team at the University Clinic of Navarra, Pamplona , lead by Dr. Carlos Centen. My travel was made possible by a grant provided by the IAHPC Traveling Scholarships program. During my visit I was integrated into all of the activities of the team - ward visits, outpatient clinic, scientific meetings, conferences and team meetings. I also spent one day with another palliative care team in the Hospital of Navarra in order to observe different approaches to similar problems. It was a great pleasure for me to be in the middle of real teams. Team work is easy to describe, but hard to put into practice. I observed very good communication (a cornerstone in palliative care) between both patients and their families and professionals. The working relationship between the palliative care team and the oncology team, lead by Dr Jesus Garcia-Foncillas, is quite remarkable and makes the care of the patient easier for both. Since the experience and knowledge of the team in Pamplona is very useful to us, we have planned further collaborative work. I would like to thank IAHPC for making this meeting possible and for providing the support of my travel and to the team in Pamplona for all their help.World Hospice and Palliative Care Day The IAHPC supported organizations in ten countries to be able to develop programs to bring the concept and information about hospice and palliative care to the people, the medical professionals and the governments during World Hospice and Palliative Care Day. Several reports ( Argentina , Uruguay , The Philippines, Colombia and Brazil ) have already been published in the past two issues of this newsletter. The remaining reports are below. Guatemala On October 8, 2005, we celebrated our first palliative care day! After almost a year of hard work and proposals, Guatemala has just taken its first step toward being accepted in the wider world of palliative care. Also in October, a Palliative Care Unit was established in the Cancer Hospital INCAN. The Hospital has more than 45 years of experience in cancer diagnosis, prevention and treatment and now for the first time it is intimately involved in the palliative care philosophy. We usually celebrate something that has already being born or created; we don’t celebrate birthdays of an unborn person, that is why our first participation in this world celebration was aimed at the promotion of palliative care concepts and the rights of patient’s to be able to have dignity in their brave and often painful readjustment process when cancer enters their lives. Because of this, we organized weekly meetings that were held at INCAN each Tuesday during the month prior to October 8. We had information meetings with different groups that work with our patients. In these sessions we met separately with:
Dr. Eva Duarte MD-MA Moldova For the first time, the Republic of Moldova celebrated the World Hospice and Palliative Care Day on October 8 th, 2005. Hospice “Angelus” organized several of the events dedicated to this day, thanks in part to the funding we received from the International Association for Hospice and Palliative Care (IAHPC). A couple of days before October 8, “Euro TV”, the Chisinau station, featured a live program with the theme Hospice and Palliative Care. Dr. Isac Valerian, director of the National Association of Palliative Care in Moldova and of Hospice “Angelus” was invited to participate. The TV spectators could see and learn about what Hospice “Angelus” is doing and the people we are helping. Because it was a direct transmission, people could ask questions while we were on the air. After this program, the number of calls to the hospice from people who are in need have greatly increased. Many people did not know about the existence of hospice and palliative care in Moldova and this TV program was very helpful. On October 8 a charity concert in the National Philharmonics of Chisinau was given with the slogan “Voices for Hospices”. Several artists and orchestras eagerly participated in this concert, including the famous Moldavian opera singers such: Maria Biesu, prim Dona of Moldova and the entire world (1998) and Mr. Nicolai Moscovici , the Jazz Band Univox, and the National Philharmonic Orchestra. Cancer patients and their relatives were invited as well as representatives of Parliament, the Ministry of Health and other official representatives. About 16 volunteers coordinated and helped with this event. With their help we organized a small campaign “Buy a Brick” to help raise funds for our hospice building. Also, before, and after the concert, in the foyer of the National Philharmonic building, participants could buy wall-calendars and pocket calendars. The calendars were prepared by children on their first day of school on September 1, 2005; an important contribution and participation in the celebration of World Hospice and Palliative Care Day. In the evening of October 8 th, another live TV program called “ Life in Balance” was aired. On this program doctors from the Hospice “ Angelus”, the director from the Health Ministry Department Chisinau and one cancer patient from Hospice” Angelus” participated. A lot of questions were asked by other cancer patients and guests. At the end I’d like to say that we achieved the following: 1) We increased awareness and sensibility of the public about the problems of ill cancer patients. Alla Bodiu
Thanks to a grant we received from the International Association for Hospice and Palliative Care, we were able to celebrate World Hospice and Palliative Care Day activities in Mexico in several ways. Our main objective was to create a Website for our organization and school. We were able to buy the domain name www.alpajal.org and are now actively working on the content. The celebration of the World Day was carried out in the following way:
Dr. Gloria A. Dominguez Venezuela The Foundation for the Development, Support and Research for Palliative Care (Fundación Desarrollo, Apoyo e investigación a los cuidados Paliativos – FUNDAICP) coordinated the activities to celebrate World Hospice and Palliative Care Day in Venezuela . We started to celebrate the Day one week prior to October 8 th with interviews on the radio, TV, and newspapers that have the largest circulation in Venezuela . In addition, messages were sent via the Internet to increase awareness about the importance of the World Hospice and Palliative Care Day and requesting signatures on the petition to Governments. On October 7 th, we organized a concert with Mr. Gerry Weill, an internationally known jazz player. The event started with a brief explanation about hospice and palliative care, the reason behind the celebration of the first World Hospice and Palliative Care Day and how crucial it is that everybody collaborates and participates in supporting palliative care in the country. In addition, we requested governments and policy makers to take action to require and guarantee the provision of palliative care in Venezuela . We are hopeful that this will generate many changes and we will continue to work to make palliative care available in our country. I am very grateful to the International Association for Hospice and palliative care (IAHPC) for the funding and support we received which enabled us to celebrate this event. Dr. Patricia Bonilla Cuba This report is about the celebration of World Hospice and Palliative Care Day in Cuba. Report on the celebration of the first International Hospice and Palliative Care Day in Cuba . Author: Dr. Iván Justo Roll The celebration of the first International Hospice and Palliative Care Day in Cuba marked an important step in the development of care for severely ill and dying patients in our country. Cuba is a country with ample medical services: 99.1% of the population has access to a family doctor; there is a network of hospitals and medical services that guarantee access to emergency services and medical attention in cases of chronic illness, including advanced cases and cancer patients. The state ensures that all medical attention is provided free of charge. Little is known, however, among professionals, patients and families on the subject of Palliative Medicine, and equally little is known about hospice philosophy and the way it can dramatically change how a patient comes to grips with the advanced stages of cancer, and how loved ones’ pain and suffering can be relieved. The reality of terminally ill patients in Cuba is defined largely by the patient’s own ignorance of having cancer or a terminal illness. This phenomenon indicates obvious cultural problems, but another interpretation could be the denial and fear of hearing and pronouncing the words “cancer,” “advanced illness,” or other such words that could indicate that the last stages of one’s life could be spent suffering. Without proper Palliative Care, and without the philosophy shared by hospices, modern medicine is insufficient to cover all angles of suffering faced by dying patients. When introducing a “new” concept, ambiguous and unfamiliar to the majority, the promotion of such services can be delayed if the message is not delivered to all concerned in an appropriate manner. The promotion of palliative care services among professionals, patients, and the population at large, is a huge challenge for which the chosen date by Help the Hospices and the World Health Organization appeared to be an appropriate opportunity for us to involve everyone concerned, to allow voices to be heard, and to provide an occasion for people to reflect on these themes. The objectives of the celebrations were to cover many areas simultaneously as an important scientific event and to attract all professionals. With these objectives in mind, during the week before the celebrations a short journey was carried out at the Dr. “Tomás Romay” Health Centre. For this event we invited, for a second time, Mrs. Jennifer Kwakwa a highly respected authority on the subject among Cubans professionals. She agreed to teach about basic principles and how to undertake palliative care for the terminally ill patient. For this occasion, Dr. Richard Harding, Researcher with the Palliative Care Department of King’s College, London , discussed his research concerning the care of terminally ill patients, which was our central theme during the event held between October 3 rd and 7 th. A total of approximately 400 professionals participated during the week which included two visits to hospitals. Many professionals were listening to and discussing the topic of palliative care for the first time, covering such themes as indications of pain, death with dignity, benevolence, autonomy, research, terminal sedation, etc. While these interesting conferences and intense debates were underway in the small theatre at the Dr. “Tomás Romay” Health Centre, in the “Miguel Enriquez” Hospital and in the “Enrique Cabrera” Hospital, new ideas were being forged as they had been preconceived a few months earlier. The event was advertised on radio, as well as all activities to celebrate the first International Hospice and Palliative Care Day. A number of people were motivated to ask questions and to learn a bit more on the topic. Answers to their concerns served to expand other listener’s knowledge on the topic. During the rest of the week, agreements were consolidated through programs put together by the Old Music Orchestra “Ars Longa,” the National Opera and the Ballet Flamingo Company “Aires.” The ballet company and the National Opera decided to dedicate their program to the International Hospice and Palliative Care Day. In the case of “Ars Longa”, the program was exclusively made up of songs dedicated to the care of terminally ill patients. Teresa Paz, its director, since her first interview agreed, never once wavering, to the inclusion of the celebration’s logotype as well as a discourse drawn up specifically for the occasion to be added to each program. Those brief words were a translation of the original composition by Help the Hospice to which a report was added about the attention accorded terminally ill patients in our country. This report was written by Dr.Jorge Grau, Head of the National Program on Pain Control and Palliative Care. At the end of the event all united, colleagues and musicians, to give thanks and to celebrate the fruitful initiative. Important ideas surfaced during the course of the week, ideas on how and what to research. At the same time new research ideas were also surfacing from the presentations and meetings in hospitals, as well as from the lips of Dr. Suylleng Yee, the person responsible for education at the National Hospital . There emerged the possibility of creating virtual programs between institutions for the teaching of palliative care. At the moment, the first of those initiatives is already underway and we hope to soon be able to circulate the results of a study using the Results Evaluation Scale, translated and validated recently in Argentina , which was brought to our attention by Dr. Harding. Although the principal page of Infomed , Cuba ’s health page, covered our celebration, and the television covered the concert, a few items were missing in this first celebration, such as the involvement of institutions and those responsible for our society, and having an impact that would transcend the rest of our country. Those are objectives towards which we will work next year. All these activities were supported by grants awarded by the International Association for Hospice and Palliative Care (IAHPC) and Help the Hospices. ~~~~~~~~~~~~~~~~~~~~~~~ Dr. Woodruff, MD Note: Book Reviews ST. JOSEPH’S HOSPICE, HACKNEY
OPIOIDS IN CANCER PAIN Mellar Davis, Paul Glare and Janet Hardy (Eds)
ETHICAL ISSUES IN PALLIATIVE CARE 2nd Edition
ETHICS AND PALLIATIVE CARE
ASPECTS OF SOCIAL WORK AND PALLIATIVE CARE
PALLIATIVE CARE AND SEVERE DEMENTIA ~~~~~~~~~~~~~~~~~~~~~~~ Good news from India : The Department of Health & Family welfare of government of India has taken a great step forward with the development of palliative care. It is restructuring its National Cancer Control Policy for the 11th five year plan starting in April 2007. For this, they have formed a task force to assist with development of strategy. The task force has six groups and one of them is on Palliative Care and Rehabilitation. This latter group has 15 members from all the fields of palliative care and rehabilitation representing the various parts of India. The task force has been asked to review current strategy, and to submit a strategy by 31 March 2006. We see this as a major positive step with great promises for the future. MR Rajagopal ~~~~~~~~~~~~~~~~~~~~~~~ The Temmy Latner Centre for Palliative Care is pleased to announce the: Golda Fine Memorial Academic Award The family of the late Golda Fine has established an annual award based at the Temmy Latner Centre for Palliative Care (TLCPC) at Mount Sinai Hospital in Toronto . The award will honour local, provincial, national or international inter- disciplinary health care providers or academics who are working in the field of palliative/end-of-life care. The award will allow the recipient to spend 2-3 months at the Temmy Latner Centre to learn and to teach, so that both the Centre and the applicant benefit. Award Amount: Application Deadline: February 28, 2006 ELIGIBILITY:
Should you wish help in developing your application, or to request an Application Form please contact: Jacqueline Kurji Temmy Latner Centre for Palliative Care
~~~~~~~~~~~~~~~~~~~~~~~ UICC World Cancer Congress 2006 Bridging the Gap: Transforming Knowledge into Action Washington DC , 8-12 July 2006 I warmly encourage you to register early for UICC's next World Cancer Congress, which takes place in Washington DC , 8-12 July 2006. The congress, aptly titled Bridging the Gap - Transforming Knowledge into Action, is a vital step toward easing the cancer burden on the people of every nation. It will bring together cancer control leaders and practitioners from around the world to engage in sharing and exchange across disciplines. Half of those attending are expected to come from outside the United States , creating a unique opportunity to share cancer control strategies from around the world. A special rate for early registration is available until the end of March. To avoid visa difficulties, we strongly encourage you to register for the congress as soon as possible. Please note that to make this the best possible conference for you, the congress organisers are seeking additional abstracts in: Track Three: Cancer Supportive Care (Symptom management, psycho-oncology, quality of life, survivorship, palliative care, and end-of-life care) Track Four: Building Capacity in Cancer Organisations (This incorporates elements of the World Conference For Cancer Organisations, including strategic planning, management, fund-raising, etc.) The deadline for submitting abstracts in these two tracks has been extended to 12 January 2006. We congratulate the organisers of the conference on their dedicated work in preparing this conference. We look forward to seeing you in great numbers in Washington and to hearing your views on how we can continue to work together towards global cancer control. To submit an abstract or learn more about the congress, visit: If you have difficulty submitting via the website or finding the information you require, send an email to: [email protected] or call +1 404 417 5998. Yours sincerely, Isabel Mortara ~~~~~~~~~~~~~~~~~~~~~~~ News Release “Ads for Drugs to Treat Cancer-Related Fatigue May Be Misleading, Based on Findings in the Journal of Palliative Medicine. New Rochelle , NY , December 16, 2005 — Direct-to-consumer advertising promoting the use of erythropoietin to alleviate cancer-related fatigue fails to point out that the drug is only effective against fatigue caused by anemia. However, anemia is not a significant cause of fatigue in most cancer patients, according to a study in the December issue (Volume 8, Number 6) of Journal of Palliative Medicine , a peer-reviewed publication of Mary Ann Liebert, Inc., and the official journal of the American Academy of Hospice and Palliative Medicine. The paper is available free online at www.liebertpub.com/jpm this is a news release obtained from the publisher. ~~~~~~~~~~~~~~~~~~~~~~~ Announcement International Psycho-Oncology Society (IPOS) and the European School of Oncology (ESO) Dear Colleague, The International Psycho-Oncology Society (IPOS) and the European School of Oncology (ESO) are proud to announce the development of the Multilingual Core Curriculum in Psychosocial Oncology. It is the first multilingual program dedicated to the education of all professionals working with cancer patients, including medical doctors, nurses, social workers, psychologists, technicians and all others. Key thought leaders and experts in the field have developed one-hour lectures on five important subjects in psychosocial oncology, specifically Communication Skills, Psychosocial Assessment, Anxiety, Depression and Distress Management. This core program is available in six languages on both the IAHPC webpage in http://www.hospicecare.com/edu/ We invite you to visit this program and strongly encourage you, at the end of each lecture, to fill out the evaluation form and send it via the web (as indicated on the website). This is extremely important in order to provide feedback on this initiative and to verify the possible continuation of the program in the future. Yours Sincerely, Luigi Grassi, Program Coordinator ~~~~~~~~~~~~~~~~~~~~~~~ From the Observatory Dear colleague, The Observatory has added the last of 6 Middle East Cancer Consortium (MECC) member country reports to our pages. Click here to discover more: May we take this opportunity to wish you all a Merry Christmas and prosperous New Year. Anthony Greenwood ~~~~~~~~~~~~~~~~~~~~~~~ More Meetings Palliative Medicine 2006 International Symposium Sponsored by The Cleveland Clinic Foundation March 23-25, 2006 Congress information and registration: ~~~~~~~~~~~~~~~~~~~~~~~ 16th International Congress on Care of Sponsored by the Departments of Medicine and Oncology McGill University September 26-29, 2006 Ph (514) 286-0855 ~~~~~~~~~~~~~~~~~~~~~~~ Refresher Course in Palliative Medicine Sponsored by the Palliative Care Division February 25-26, 2006 For additional information and registration, please contact: Dr Prasanth C V ~~~~~~~~~~~~~~~~~~~~~~~ 2006 SMMU International Nursing Conference on Palliative Care Palliative Care: Theory, Skills and Practices Event Location: Hangzhou , China Event Description: Contact Information: Anne Laidlaw - IAHPC Webmaster Welcome to the Webmaster's Corner! Bookmark the following link to always view the current newsletter If you wish to receive our free e-news at your email address. Just fill in your email address on the top of any of our web sites web pages & click submit. Featured Section - Pain and Palliative Care Assessment and Research Tools Coming Events! Please visit our Future Events section there are many events, meetings & seminars planned for 2006. We added 6 new eventsd this month. Don't forget! Renew your IAHPC Membership so you do not have a lapse in benefits. Many of our members memberships expire during the month of January. Tips to Help You Reduce or Stop Spam1. Use a separate email address when you post messages to any public forum, such as newsgroups and mailing lists. Never use your personal email address for this purpose -- or you'll be flooded with spam. Then, you can quickly go through the email in this account to see what's spam and what isn't. And your main personal email address won't be as clogged with spam. Make sure to add [email protected] to your list of allowed email addresses to receive IAHPC newsletters and other communications you have subscribed to. Drop by often & don't miss out Until next month! Comments/Questions about our website? ~~~~~~~~~~~~~~~~~~~~~~~ William Farr, PhD, MD I hope and pray that we all have a very happy, healthy and peaceful New Year and that hospice/palliative care education and implementation advances because of the untiring efforts of so many of you! Thank you for this opportunity to be of some help. WCF I want to take this opportunity to thank all of our retiring members for their dedication and service to this organization. A special note of thanks goes to Bob Child who because of his knowledge and ability developed and maintained the first IAHPC website for many years and did so with great skill. I can attest to this since he often guided me as I made mistakes in uploading the newsletter and at times I wiped out the entire website due to my computer ignorance. Respectfully, William Farr, PhD, MD Letters to the editor! Ways To Help The IAHPC © 2006 IAHPC Press
|