International Association for Hospice and Palliative Care 

Subject: IAHPC Newsroom 2006; Volume 7, No 1, January

William Farr, PhD, MD
Editor

Liliana De Lima, MHA
Coordinator

Alou Design
Layout and Distribution

International Association of Hospice and Palliative Care (IAHPC)

Dear Members and Colleagues:

This issue of the IAHPC newsletter is now on our website at URL:
http://www.hospicecare.com/news/01-06/

To send an email to one of the IAHPC Newsletter team members,
visit the following page http://www.hospicecare.com/contact.htm

Please click on the title of any article to view the full article.
Visit
http://www.hospicecare.com/news/ to receive our free monthly newsletter.

In this issue:

  • IAHPC Traveling Scholars’ Report:
    Romania
  • Regional Report – India

Regards,
Kathleen Foley, MD  Chair
William Farr, PhD, MD Vice Chair and Editor


Message from the Chair and Executive Director

Kathleen M. Foley, MD (USA)
Liliana De Lima, MHA (USA)

Dear readers:

We hope that this New Year brings happiness, peace and health to all of you and your loved ones. We are looking ahead to 2006 and we are eager to continue to work and help in the promotion and dissemination of hospice and palliative care around the globe.

We have several important announcements this month:

First, some of you may know that we recently had elections to the IAHPC Board. We had a call for nominations to our members in October, and the response was overwhelming. Fifteen excellent candidates were nominated for only six seats, and for this reason, the voting process took longer than we originally anticipated. The selection process was difficult for the Board, and we are very thankful with all the nominees and nominators who participated in this process and for their support of the organization.

The six newly elected board members are:

1. KS Chan , MD (Hong Kong) Since 1995, Doctor KS Chan has been the Consultant and Chief of Service of Pulmonary and Palliative Care Unit of Haven of Hope Hospital in Hong Kong . He graduated from the University of Hong Kong and is the senior editor of the Hong Kong Medical Journal. After receiving his medical training at the United Christian hospital in Hong Kong he spent time in the United States and the United Kingdom for further training in Pulmonary Medicine and Palliative Medicine. He is an Associate Professor at the University of Hong Kong and the Chinese University of Hong Kong, Council member of the Asia Pacific Hospice Network, Chairman of the Hong Kong Society of Palliative Care and Board member of the Society for the promotion of Hospice Care. He is also a consultant and a member of the teaching faculty for the Li Ka Shing National Hospice Program of the Peoples' Republic of China.

2. David Currow , MD ( Australia ) Doctor Currow is currently Professor of Palliative and Supportive Services at Flinders University in South Australia and Director of the International Institute of Palliative and Supportive Studies (IIPSS) and the Southern Adelaide Palliative Services in Adelaide . He received his medical degree from the University of Newcastle and is a Foundation Fellow of the Australasian Chapter of Palliative Medicine and Fellow of the Royal Australasian College of Physicians. Professor Currow has published extensively and is currently a member of the Executive Committee and Chair of the Asia Pacific Hospice Network Education Committee. He is currently Editor in Chief of Progress in Palliative Care.

3. Jacek Luczak , MD ( Poland ) Professor Luczak is the medical director of the Palliative Care Department at Hospice Palium in Poznan . Since 1990, he has been professor of palliative care/medicine at Karol Marcinkowski University of Medical Sciences. In 1987 he founded and became the medical director of the first palliative care service at the University Cancer Hospital in Poznan . He earned his medical degree in Karol Marcinkowski University of Medical Sciences in Poznan . He is part of the editorial board of Progress in Palliative Care, European Journal of Palliative Care, Bol (Pain-Polish journal) and Medycyna Paliatywna (Palliative Medicine-Polish journal). He is honorary president of the Polish Association for Palliative Care; and currently he is the Chairman of ECEPT and the President of National Council for Hospice and Specialist Palliative Care service of Ministry of Health in Poland .

4. Anne Merriman , MD ( Uganda ) Doctor Merriman is Founder and Director of Policy and International Programs at Hospice Africa in Uganda . She is also founding member and steering committee Convener of the African Palliative Care Association (APCA), Vice President of African Palliative care Association (APCA), Chairperson of the Advocacy Committee for the African Palliative Care Association and Board Member of Hospice Africa (UK) and Hospice Africa Uganda. Dr. Merriman earned her medical degree in the University College in Dublin . She has lived in India , Singapore , Kenya and Uganda working in geriatrics and palliative care. Through her efforts, she has been able to influence and promote the development of palliative care in several countries in Africa, including Uganda (where Hospice Uganda is located), Tanzania , Malawi , Ethiopia , Zambia , Ghana , Nigeria , Cameroon , Sierra Leone and Zambia . Dr. Merriman edited several publications, published extensively and has received numerous international awards as recognition of her hard work and successes in improving the care of patients in Africa and Asia .

5. Faith Mwangi-Powell, PhD ( Uganda ) Dr. Mwangi-Powell is currently the Director of the African Palliative Care Association. She has extensive experience in sexual and reproductive health, HIV/AIDS and palliative care and her past and current work activities include working on advocacy issues, and coordinating funding and support to programs in Asia and Africa for the development of palliative care on the continent. She earned her doctoral degree at the University of Exeter where she studied the impact of economic development upon women’s status and fertility-related behavior in rural Kenya . In addition, she holds a Certificate in health and social services management from Sheffield Hallam University and a Masters in Economic Population Policies and Programs from the University of Wales , in Cardiff .

6. Roberto Wenk , MD ( Argentina ) Dr. Wenk is one of the pioneers of palliative care in Argentina and Latin America . He is currently director of the Programa Argentino de Medicina Paliativa of the Fundacion FEMEBA in Buenos Aires . Dr. Wenk earned his medical degree from the Universidad Nacional de Rosario in Argentina and a diploma in anesthesiology from the Colegio de Médicos in Rosario , Argentina . Dr. Wenk has been fully dedicated to palliative care for more than 20 years and is a founding member of the Argentinean Association for Palliative Medicine and of the Latin American Association for Palliative Care (ALCP). He has published extensively and has been able to establish relationships with international universities to design and develop research and educational programs in Latin America . He is senior editor of the ALCP Newsletter and member of several working groups and committees.

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

IAHPC is a unique organization capable of helping with the promotion and development of palliative care around the World. These individuals are joining a wonderful and talented team of Board members from around the world and we look forward to working with them.

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.

We are glad to announce that the US Cancer Pain Relief Committee (USCPRC) has awarded IAHPC a two year grant for capacity building. We are very grateful for the support of the USCPRC and for this grant that will help our organization focus on achieving its mission and supporting the development of hospice palliative care around the world.

During the past month of December, we received many donations from individuals who gave funds to IAHPC in memory of a loved one and as a gesture of gratitude for the care that their loved ones received from hospice and palliative care providers. Many thanks to all of them for their encouragement support and help. These donations are very important to the organization as they are the reflection of how much impact we are really having at the level that matters most - patients and families.

We encourage all of you to continue collaborating with IAHPC by enrolling as members, donating funds to the organization or sending us books and journals to our Clearing House Program.

We look forward to a year full of success stories and palliative care developments from around the World.

Sincerely,

Kathy Foley, MD
Chair, Board of Directors

Liliana De Lima, MHA
Executive Director

 ~~~~~~~~~~~~~~~~~~~~~~~~~

Article of the Month

Carla Ripamonti, MD
(Italy)

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.
Journal: J Clinical Oncology 2005; 23:6240-48

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:

  1. The quality of life of the patients other then their life expectancy has to be considered in the decision making process
  2. Clinical judgment should be used not alone but together other prognostic factors or scores because, by itself, it overestimates the length of survival
  3. Some clinical signs and symptoms proved to be correlated with survival, they are, low performance status, signs and symptoms of the cancer anorexia-cachexia syndrome (anorexia, weight loss, dysphagia, xerostomia), cognitive failure (delirium) and dyspnea
  4. Biologic factors such as leukocytosis, lymphocytopenia, C-reactive protein have a prognostic value
  5. The prognostic scores/indices developed to estimate the life expectancy in a rapid and simple way were the Palliative Prognostic (PaP) Score and the Palliative Prognostic Index (PPI). Both have been validated and are useful in clinical practice. However, such scores have never been compared.
  6. The use and the communication of prognosis to patients should be considered within the context of listening to each patient regarding his/her needs for communication and information on prognosis within an ethically valid patient-physician relationship

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
Member of the Board of Directors, IAHPC

Please visit the following link to read past Articles Of The Month:
http://www.hospicecare.com/AOM/

~~~~~~~~~~~~~~~~~~~~~~~

Traveling Scholar’s Report - Romania

Meeting a hospital based palliative care team in the University Clinic of Navarra

By Dana Oana Donea, MD
“Nicholas Edeleanu” Resource Centre for Hospice and Palliative Care
Bucharest, Romania

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:  

  • The service people that clean and keep our patients safe, make exams, take samples and x-rays
  • Our institutional people, officers, administrative and secretarial workers, who provide information and make the hospital work as a system.
  • We instructed our nurses that they are important to us and for our patients because they attend to their everyday needs
  • We also had a meeting with our volunteers, most of whom are cancer survivors and devote their time and compassion at the patient’s bedside listening, helping, providing attention and affection to them.
  • Our last and 5th meeting was Thursday, October the 6th, with the medical and specialist staff. We also had the presence of the press and of our palliative care colleagues from San Antonio , Texas Dr. Aaron and Ms. Judy Malakoff who volunteered for three weeks to share with us their experiences with palliative care. We were very proud to announce our unit as "opened" and officially providing service since that day. We appreciate the support of the IAHPC, particularly the enthusiasm and dedication we received from Liliana De Lima, who also made it possible for me to visit as a medical observer at the MD Anderson Unit of Palliative Care and the Houston Hospice. Now that we are providing care to patients, we expect to participate again and to take part in all the celebrations in the years to come, not only as an institution, but as a nation that is running with the palliative care vision and ideals of care. 

Dr. Eva Duarte MD-MA
Palliative Care Unit
INCAN
Guatemala

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.
2) We collected funds.
3) We celebrated World Hospice and Palliative Care Day with a very successful concert.

Alla Bodiu
Manager and Fundraiser
Hospice Angelus
Moldova


Mexico

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:

    • Palliative Care Conferences:
  • Several conferences took place in the department of geriatrics which includes family development – there were more than 80 participants in each session.
  • Several conferences were given on palliative care, the rights of terminal patients, death and bereavement, euthanasia in the Mexican law and pediatric palliative care in collaboration with the Universidad Autónoma de Guadalajara (www.uag.mx/27/dolor)
  • A conference was given on palliative care to the Tepic Nayarit Gerontology Society.
  • Communications through the rdio:
  • Two programs were aired through vital radio on channel DIF for an hour each in September and October.
  • A palliative care program was carried on Radio Mariano (religiously affiliated) on the 17 th of November.
  • Programs on Television and Media:
    • A documentary was produced on palliative care and home care through channel 21 with repetitions three times during the week through Televisa and TVU (Universitary TV).
    • A newspaper published three consecutive interviews about the World Hospice and Palliative Care Day and another on education in palliative care within the health care system. These can be seen on the website of the Universidad Autónoma de Guadalajara under section periódico 8 columnas. The last article was on Monday, 14 th of November. http://www.uag.mx/nexo/nexo.htm
  • In addition to the Universidad Autonoma de Guadalajara, the ITESO (a Jesuit university) also offered courses on palliative care with the support of lic. Fabiola Montoya Martín del Campo. In addition, the program Palia joined in the Universidad de Guadalajara provided many promotional items and globes for the dissemination of the World Day. All of this was possible because of the help and support of local NGOs such as ONKOS, HOSPICE CRISTINA, and Dr. Miguel Ángel Ochoa.
  • Symposium. On Friday, November 7 th, we celebrated the World Day with a symposium given jointly with the Mexican Association Against Pain, called Mexico Alleviates. Business people, directors of hospitals, college professors and lay people were invited. More than 80 people attended. The symposium was supported by two pharmaceutical companies. Several directories of palliative care programs and hospices in Guadalajara were given out. The symposium included a musical presentation and oral stories on palliative care for children. These were also published in the Periodico 8 Columnas. A new symposium, as a follow up to the World Day, has been scheduled for December 2 nd, in the Psychology School at the Universidad de Guadalajara. The website at the Universidad has a page dedicated to the celebration of the World Day in http://www.uag.mx/27/dolor/diadeldolor.htm

Dr. Gloria A. Dominguez
President
School of Pain and Palliative Care Specialists
State of Jalisco
Mexico

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
President FUNDAICP
Director Palliative Care Program
Instituto Oncologico Luis Razetti
Caracas, Venezuela

Cuba

This report is about the celebration of World Hospice and Palliative Care Day in Cuba.
Dr. Richard Harding (UK) an IAHPC Traveling Fellow spent several weeks in Cuba during this time – his report was published in the December, 2005 IAHPC Newsletter.

Report on the celebration of the first International Hospice and Palliative Care Day in Cuba .

Author: Dr. Iván Justo Roll
Palliative Care Team Coordinator
Dr. “Tomas Romay” Health Center
Old Havana , Cuba

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.

~~~~~~~~~~~~~~~~~~~~~~~

Hospice Palliative Care Book Reviews

Dr. Woodruff, MD
(Australia)
                                                                                              

Note:
The Table of Contents for each book reviewed is available in the Bookshop at www.hospicecare.com/Bookstore

Book Reviews

ST. JOSEPH’S HOSPICE, HACKNEY
A century of caring in the East End of London


Michelle Winslow, David Clark
Observatory Publications, 2005
Pp 152
ISBN 095441923-5
RRP £10 plus postage
Available from www.observatory-publications.net/

Here is another wonderful volume of oral history from David Clark’s group, detailing the story of St. Joseph’s Hospice, Hackney during the period 1905 – 2005.  The first chapter is an overview of the hospice’s entire 100-year history and the following chapters explore a particular theme over the hundred years.  There are chapters on the religious and spiritual aspects, on clinical work (including the contribution of Cicely Saunders, who worked at St. Joseph ’s for 7 years), on the place of the hospice within its local community, on the experiences of patients and families, and on the public face of the hospice.  It makes an inspiring tale encompassing love and compassion, much determination, growth and adaptation, and a whole lot more.  I found this book both interesting and enjoyable, and I wonder whether all of us who work in palliative care have not got something to learn from those who devoted themselves to caring for those in the community most in need of help at the end of life. 

Highly recommended.

 

OPIOIDS IN CANCER PAIN

Mellar Davis, Paul Glare and Janet Hardy (Eds)
Oxford University Press, 2005
337 pp
ISBN 0-19-852943-0
RRP £49.95,  $US98.50
More Info & Purchase

This book is divided into three sections.  The first (2 chapters) deals with opioid receptors and pharmacodynamics as well as opioid pharmacokinetics.  The middle section (12 chapters) deals with the individual opioid drugs.  The last section (7 chapters) deals with opioid choices, opioid rotation, equianalgesia and dosing strategies (including patient-controlled analgesia and spinal opioids), and opioid-resistant pain.  It is a tightly referenced review of the evidence that is available in the medical literature.  There is an absolute mine of information in this book and the editors are to be congratulated for bringing it all together.

The blurb on the back cover says this book ‘presents clear guidelines on the use of opioids when managing cancer pain’, but in many situations there are no randomized controlled trials on which to base those guidelines. I thought the chapters on basic science might have been easier to understand with the more liberal use of cartoon-type diagrams.  Elsewhere, particularly in the chapters dealing with individual drugs, more tables, boxes, or bullet-point lists would have been helpful.

I found the overuse of abbreviations an annoyance.  Using two different abbreviations for continuous subcutaneous infusions, or having two different meanings for the abbreviation PCA, is distracting and should have been edited out.  The book is not inexpensive and would have been better value in a soft cover at half the price.

The editors are to be congratulated for producing the premier reference on opioids in cancer pain. But it is not a book you would whip off the shelf for quick reference and I hope the next edition not only includes new information but is more user-friendly.

 

ETHICAL ISSUES IN PALLIATIVE CARE   2nd Edition

Patricia Webb (Ed)
Radcliffe Publishing, 2005
135 pp
ISBN 1-85775-825-0
RRP £19.95, $US38
More Info & Purchase

This is the second edition of Patricia Webb’s ‘collection of reflections and ideas’ from a variety of professionals with experience and interest in the ethical issues that arise in palliative care. As in the first edition, chapters cover ethical issues in the palliative care environment, honesty, advocacy, informed consent, euthanasia, and the teaching of ethics. There is also a useful new chapter on the theory and practice of critical decision-making. This edition covers a wider range of issues, in keeping with the gradual shift in the clinical domain of palliative care.

The chapter on euthanasia caught my eye, again.  It now contains interesting and useful discussions of the cases of Dianne Pretty and Ms. B.  But it still discusses the practice of euthanasia in the Australian Northern Territory and the State of Oregon , rather than physician-assisted suicide.  And still no mention of the thousands of patients (according to the published reports from the Dutch authorities) who suffer euthanasia without request.  If we are discussing ethics, what about the rights of those patients?

This second edition is a definite improvement on its predecessor and would be a useful auxiliary text for a course in palliative care ethics.  There are more questions than answers, but that is what is required to help individuals and teams to make good clinical decisions.

 

ETHICS AND PALLIATIVE CARE
A Case-based Manual


Roger Worthington (Ed)
Radcliffe Publishing, 2005
129 pp
ISBN 1-85775-846-3
RRP £21.95, $US39.95
More Info & Purchase

This book is a very practical introduction to the ethical issues that arise in end-of-life care.  It is more focused, practical, and less philosophical than Webb’s ‘Ethical Issues in Palliative Care’.

In the first part of the book there are chapters on ethical theory, the theory and practice of decision-making, decisions at the end-of-life (including euthanasia and physician-assisted suicide), autonomy and rights, and the use of sedation.  The second part of the book comprises six case histories and clinical scenarios.  The descriptions of how the cases were managed are interspersed with reflective commentaries labeled ‘Clinician’s thoughts’.  The case histories are very real and will usefully appeal to anyone who is working in end-of-life care.

This will be a useful text for any course dealing with the ethical issues that arise in end-of-life care. 

 

ASPECTS OF SOCIAL WORK AND PALLIATIVE CARE

Jonathan Parker (Ed)
Quay Books, 2005
167 pp
ISBN 1-85642-266-6
RRP £24.99  $US44.25
More Info & Purchase

The social worker has always been a central player in the palliative care team and this book describes all aspects of their work in the palliative care setting. Chapters cover the history of social work and the evolution of education for social work, what service users need or expect from palliative care social workers, issues related to culture and ethnicity, working in the multidisciplinary setting, bereavement support, interpersonal skills, dramatherapy and spirituality. The two final chapters deal with social work and palliative care for people with dementia and those who have learning disabilities. 

This will be a useful book for students of social work and for practising social workers coming into contact with palliative care. It will also be useful for other members of the interdisciplinary team and their students in that it will improve their understanding of the social worker’s role.  The material is well presented and set-out, and my only quibble would be that there was no list of the institutional affiliations of the contributing authors.

PALLIATIVE CARE AND SEVERE DEMENTIA

Julian Hughes (Ed)
Quay Books, 2005
160 pp
ISBN 185 6422658
RRP £29.99

This book is about the provision of holistic, multidisciplinary palliative care for people with dementia.  It takes a truly holistic view, covering physical, psychological, social and spiritual aspects of care.  There are also chapters on ethical decisions, quality of life, and supporting family carers at the end-of-life.  This book is full of practical wisdom and advice and certainly should be available in any institution that looks after people with dementia. It would also be a useful addition to the library shelf on the palliative care ward, to help us with those testing patients whose physical disease is compounded by dementia.

Roger Woodruff,
Director of Palliative Care, Austin Health,
Melbourne, Australia
(January 2006)

~~~~~~~~~~~~~~~~~~~~~~~

 Regional Reports of India

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
Amrita Institute of Medical Sciences
India

~~~~~~~~~~~~~~~~~~~~~~~

What's New

The Temmy Latner Centre for Palliative Care is pleased to announce the:

Golda Fine Memorial Academic Award
SECOND CALL FOR APPLICATIONS

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:
Two awards for CAD $18,000.00 each

Application Deadline: February 28, 2006

ELIGIBILITY:

  • Academic appointment at a university recognized by the World Health Organization
  • Demonstrated interest in and/or experience in end of life care
  • Member of a recognized health profession or health administrator

Should you wish help in developing your application, or to request an Application Form please contact:

Jacqueline Kurji
Education Administrative Assistant

Temmy Latner Centre for Palliative Care
Tel: 416-586-4800 x 1532  Fax: 416-586-4804
E-mail: [email protected]

 

~~~~~~~~~~~~~~~~~~~~~~~

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:
www.worldcancercongress.org/

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
Executive Director
International Union Against Cancer (UICC)

 ~~~~~~~~~~~~~~~~~~~~~~~

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
Christoffer Johansen, IPOS President

~~~~~~~~~~~~~~~~~~~~~~~

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:
http://www.eolc-observatory.net/global_analysis/israel.htm

May we take this opportunity to wish you all a Merry Christmas and prosperous New Year.

Anthony Greenwood
Information Support Officer
International Observatory on End of Life Care (http://www.eolc-observatory.net

~~~~~~~~~~~~~~~~~~~~~~~

More Meetings

Palliative Medicine 2006 International Symposium

Sponsored by The Cleveland Clinic Foundation

March 23-25, 2006
The Ritz-Carlton Sarasota , USA

Congress information and registration:
www.clevelandclinicmeded.com/pm2006

~~~~~~~~~~~~~~~~~~~~~~~

16th International Congress on Care of
the Terminally Ill

Sponsored by the Departments of Medicine and Oncology McGill University

September 26-29, 2006
Palais des Congres Montreal , Canada

Ph (514) 286-0855
Fax (514) 286-6066
Email: [email protected]

~~~~~~~~~~~~~~~~~~~~~~~

Refresher Course in Palliative Medicine

Sponsored by the Palliative Care Division

February 25-26, 2006
Regional Cancer Centre Thiruvananthapura , India

For additional information and registration, please contact:

Dr Prasanth C V
[email protected] or [email protected]

 ~~~~~~~~~~~~~~~~~~~~~~~

2006 SMMU International Nursing Conference on Palliative Care

Palliative Care: Theory, Skills and Practices
Sponsored By: China Second Military Medical University

Event Location: Hangzhou , China
Date Of Event: June 6-9, 2006

Event Description:
2006 SMMU International Nursing Conference on Palliative Care: theory, skills and practice will be a major event in China to learn, share and network with healthcare professional, para-professionals and caregivers in China and around the world who are working and interested in palliative care. We are also calling for abstracts and papers worldwide. Please visit our website for details of the conference and we look forward to welcoming you to the conference.

Contact Information:
Chance Sun
Education Manager
ChinEdu Consulting Co. Ltd.
Fax: (0086 21) 5037 3348
Email: [email protected] for registration and enquiries.
Deadline of the abstract submission is 31 March 2006.
Event Website: http://www.chinedu.cn/windows/b3.htm

~~~~~~~~~~~~~~~~~~~~~~~

Webmaster's Corner

Anne Laidlaw - IAHPC Webmaster

Welcome to the Webmaster's Corner!

Bookmark the following link to always view the current newsletter
http://www.hospicecare.com/news

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
A list of free assessment and research pain and palliative care tools
http://www.hospicecare.com/resources/pain-research.htm

Coming Events! Please visit our Future Events section there are many events, meetings & seminars planned for 2006. We added 6 new eventsd this month.
http://www.hospicecare.com/future.htm

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.
You may renew online here http://www.hospicecare.com/join.htm

Membership is an important way to support our organization and provides members the possibility of participating in our teaching programs. Membership can be individual or institutional and is affordable to all through a sliding fee schedule starting at US$10.00.
Not A member yet? Join here http://www.hospicecare.com/join.htm

Tips to Help You Reduce or Stop Spam

1. 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.

2. Remove your email address from your website. If you list or link to your email address, you can expect to be spammed.

Address-harvesting robots will spider your site and extract them. So remove them wherever possible and use web-based forms instead. This will drastically cut down the amount of spam you receive if you have a website.

3. NEVER buy anything from a company that spams. Don't visit their sites or ask for more information. (If you respond to their spams, you're encouraging them to continue spamming -- they only need a tiny fraction of responses to be profitable.)

There's another reason not to buy anything from a company that spams: over 95% of spam offers are scams! In fact, not responding to spam is the single most effective way to not get scammed on the Internet.

4. Filter your email. Using filters is key to managing your email effectively. It may take a short time to figure out how to do this, but it's definitely worthwhile.

For more anti-spam filtering information, visit:
http://email.about.com/cs/spamfiltering/


Safeguard your newsletter and discussion list subscriptions. If you, your ISP or web host use spam filters, be sure to let them know that you want to receive messages from any newsletters or discussion lists that you subscribe to.
Do it as soon as you sign up... otherwise, it's very easy not to notice that you're not receiving them.

Make sure to add [email protected] to your list of allowed email addresses to receive IAHPC newsletters and other communications you have subscribed to.

While these tips may not actually stop spam, they will certainly help you drastically reduce the amount of spam you get.

Drop by often & don't miss out
http://www.hospicecare.com/

Until next month!
Anne Laidlaw
IAHPC Webmaster

Comments/Questions about our website?
Contact us here: http://www.hospicecare.com/contact.htm

~~~~~~~~~~~~~~~~~~~~~~~

Editor’s Notes

William Farr, PhD, MD
(USA)

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.

Bob, have a great retirement from the Board, and THANKS for your untiring service!

Respectfully,

William Farr, PhD, MD
Newsletter Editor

~~~~~~~~~~~~~~~~~~~~~~~

Letters to the editor!
William Farr, PhD, MD
Newsletter Editor
May be submitted at the following page
http://www.hospicecare.com/contact.htm

****Thanks to all contributors to this issue.****

Ways To Help The IAHPC
http://www.hospicecare.com/donate/

© 2006 IAHPC Press

Click here to print this page