International Association for Hospice and Palliative Care 

Subject: IAHPC Newsroom
2005; Volume 6, No 3, March

William Farr, MD

Liliana De Lima, MHA

Alou Design
Layout and Distribution

Dear Members and Colleagues:

The complete IAHPC Online Newsletter has been uploaded to our website at:

PDA version located here:

There were a number of important developments in the palliative care arena during the past month.
We highlight these in this issue of the Newsletter.

The Table of Contents:

Message from the Chair and Executive Director
Dr. Kathy Foley and Liliana De Lima

Article of the Month
Dr. Ripamonti

Book Reviews , Roger Woodruff, MD

Webmaster’s Corner

Editor’s Notes
Dr. Farr


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

Message from the Chair and Executive Director

Dr. Kathy Foley and Liliana De Lima

Dear Readers:

Welcome to the March issue of the IAHPC Newsletter. We have several announcements:

1. IAHPC Recognition Awards: We are pleased to announce that the Selection Committees have chosen the following as winners of the IAHPC 2004 Awards:

a. Institutional Category winner: Programa Argentino de Medicina Paliativa - Fundacion FEMEBA (Argentina)

The Programa Argentino de Medicina Paliativa is under the direction of Dr. Roberto Wenk and was established in 1983. The program FEMEBA is divided into three care centers: Hospital Tornu in Buenos Aires , Hospital Sommer in the outskirts of the city and a Home Care program in San Nicolas. The Hospital Tornu and Sommer provide inpatient and outpatient care, and all three provide home care to patients who are able to stay at home. The mission of the Program is to provide good quality palliative care, provide professional education and work in research in clinical, nursing and psychological issues. Three different multidisciplinary groups provide care to patients of low socioeconomic status by subsidizing medications and other costs. With the hard work of the professionals who work at FEMEBA who have committed themselves to palliative care and under the leadership of Dr. Wenk, the program has become a role model for the rest of the country and Latin America .

b. Vittorio Ventafridda Award (Individual) winner:David Joranson, MSW (USA)

Mr. Joranson received a Master of Science in Social Work, with a concentration in Social Policy, from the University of Wisconsin in Madison . He is Senior Scientist and Director of the Pain & Policy Studies Group (PPSG) at the University of Wisconsin Comprehensive Cancer Center, and Director of the World Health Organization Collaborating Center for Policy and Communications in Cancer Care. Formerly, Mr. Joranson administered state drug regulatory policy in the USA , and co-founded national associations for state controlled substances agencies and state initiatives to improve cancer pain relief and address regulatory barriers. Mr. Joranson has contributed to the study and modernization of narcotics control and professional practice policies to improve pain patient access to opioid analgesics in the United States , Europe , Latin America and Asia in cooperation with national projects in China , Colombia , India , Italy , Mexico and Romania . He has advised the US Institute of Medicine’s global heath program, the World Health Organization cancer program and the International Narcotics Control Board. Joranson is a member of the International Association for the Study of Pain and participates in its Developing Country Task Force; he is also a life member of the Indian Association for the Study of Pain and has received a humanitarian award for enhancing compassionate care of addicts and pain patients, as well as awards for distinguished public service. He is author of numerous book chapters and peer-reviewed articles about national and international pain policy and addressing regulatory barriers.

c. University Award winner: University of Bristol ( UK )
The University of Bristol was founded in 1876 and it has become one of the most popular and successful universities in the UK . It currently has more than 14,000 fulltime students. The Department of Palliative Medicine was established in 1993 under the leadership of Professor Geoffrey Hanks. The goals of the program are to develop education and research in palliative medicine and provide clinical care at the University Teaching Hospital with a Palliative medicine curriculum closely linked with communication skills and ethical issues. Palliative Medicine is represented, or taught, in every year of the five year course in Bristol . Teaching is directed by Dr. Karen Forbes, who was recently elected as the Clinical Tutor of the Year during 2001, 2002 and 2003 by the university medical students. The University also provides a Master of Science in Palliative Medicine for medical students who wish to earn a Palliative Medicine Diploma. In addition, several of the modules are open to students of other disciplines who wish to participate and learn about certain specific topics.

Congratulations to all for these well deserved awards and for their outstanding job and effort in improving palliative care around the World. Many thanks to the Committee members who worked hard at selecting the winners from a large number of applications. Additional information and photos of the 2004 winners are available in our website at

2. Strategic Plan: Five years ago, under the leadership of our past Chair, Eduardo Bruera, the Board developed a strategic plan for the organization to set our goals and serve as our road map for the past years. It is now time to work on a Strategic Plan for the next five years. Two weeks ago we sent an email inviting our members to give us their suggestions via an electronic form. Many thanks to those who sent replies and suggestions. These will be taken into consideration in the development of the new plan. If you didn't receive the invitation and wish to participate, please click on the following link: Remember we will consider only suggestions made by members, so if you are not a member, we invite you to join IAHPC and help us help others. To Join Click Here

3. Grant to IAHPC: Last month, we received a grant from the Joy McCann Foundation to support the IAHPC Faculty Development Program. The grant is a prize given to our Chair, Kathy Foley, who was selected as a McCann Scholar for 2004. Thanks to this grant, we will be able to support three additional faculty positions in universities in developing countries. We are extremely grateful to the McCann Foundation and to our Chair for their generous grant to our organization.

4. Global Summit of the National and Palliative Care Associations On March 15 and 16th, IAHPC will participate in a meeting, organized by Help the Hospices (HTH) in UK under the leadership of Nick Pahl. We are proud to be sponsoring Dr Eduardo Garcia Yanneo from Uruguay as a Traveling Scholar to this Summit and be able to collaborate with Help the Hospices in this effort. Many thanks to HTH for their invitation to participate and we send congratulations for organizing this important meeting.

5. Traveling Scholarships Grant: We are glad to announce that we have now some funds available to support students in India who are interested in attending the palliative care six-week course at Amrita Institute of Medical Sciences. Those interested, please contact Dr. MR Rajagopal for information on dates and how to apply: [email protected]

6. Dignity and Culture: The IAHPC has partnered with the Manitoba Palliative Care Research Group to help with the dissemination of a survey to identify the influence of religion, ethnicity and culture in provision of palliative care. As a starting point, it will be necessary to identify and designate palliative care researchers willing to take a lead role in their region or country, or to help us facilitate the identification of such an individual(s). Once selected, the group will decide issues related to the design, and feasibility of the project. We invite you to participate in this survey by clicking on

7. Clearing House Program- Oxford Textbook of Palliative Medicine : We are glad to announce that Oxford University Press has donated more than 1,000 copies of the second edition of Palliative Medicine (edited by Derek Doyle, Geoffrey Hanks and Neil MacDonald) to the IAHPC Clearing House Program. The books are now being delivered to more than 60 countries, so in a few months many of you will receive a copy. It is our hope that this publication will be available on all the shelves and libraries of palliative care units, hospitals and care providers in the developing world. Those who are familiar with it know that the Oxford Textbook of Palliative Medicine is considered the most important and comprehensive palliative care publication in the field. Many thanks to our President Emeritus, Dr. Derek Doyle for his help in this process and to Catherine Barnes, at Oxford University Press for this important and significant donation.

8. IAHPC Website: Last month we hit a record of more than 1,000 visitors per day at our website. The number of hits per day is now above 5,000 as we continue to provide an open and free space for those who need the information. We owe thanks to Bob Child for the success of the IAHPC website and his belief that the Internet would become a global phenomenon. We also appreciate the hard work and website design of Anne Laidlaw, our webmaster, and her wonderful team at Alou Web Design.

Many thanks again to all those who have joined IAHPC and continue to support our efforts. We look forward to your comments and participation.

Until next month,

Kathy Foley, MD
Chair, Board of Directors

Liliana De Lima, MHA
Executive Director

Article of the Month

Dr. Ripamonti

Sedation for Terminally Ill Patients with Cancer with Uncontrollable Physical Distress

Author(s): Kohara H, Ueoka H, Takeyama H, Murakami T, Morita T.

Abstract:  Journal of Palliative Medicine 8/1: 20-25; 2005

Kohara et al. report the results of a retrospective study carried out in the terminally ill patients who received sedation during admission to a hospital-based palliative care unit (PCU) in National Sanyo Hospital in Japan.

The Authors defined “sedation” as “a medical procedure to palliate patient symptoms refractory to standard treatment by intentionally dimming their consciousness”.

The following data were collected: patients’ characteristics, symptoms requiring sedation, number of patients who underwent sedation, mean duration of admission, use of opioids and sedatives in the last week of life, the parenteral midazolam equivalent, the Palliative Performance Status (PPS), the level of consciousness during sedation (by means of Communication Capacity Scale). In the analysis, patients treated with increased doses of morphine or other analgesics resulting in drowsiness were excluded and nocturnal sedation was considered separately.

In the year 1999, 124 patients were admitted to the PCU and 63 of them (50.3%) presented refractory symptoms and underwent sedation. The PPS scores before sedation were poor (10-20) in 83% of the patients.

Symptoms requiring sedation were dyspnea (63% of patients) general malaise/restlessness in 40% , pain in 25%, agitation in 21%, nausea/vomiting in 6%. In 54% of the sedated patients more than one refractory symptom was reported by the patients. The patients died on an average of 3.4 days from the beginning of sedation.

No differences were reported in the duration of hospitalization between sedated and non sedated patients.

The comparison of the level of consciousness between sedated patients and non sedated patients reached a statistically significant difference at day - 2 (before death) (p < 0.05), at day - 1 (p<0.05) and on day of death (p < 0.01).

The drugs administered for sedation were midazolam (first choice in 98% of the patients with a median daily dose during the last 4 days ranging from 26 to 32.5 mg; in 94% of the sedated patients it was used in combination with morphine), haloperidol (84% of the patients), scopolamine hydrobromide in 10%, chlorpromazine in 5%, flunitrazepam in 2% and ketamine hydrochloride in 2%.

The drugs were administered via continuous intravenous infusion in 65% of the patients and via continuous subcutaneous infusion in 35% of patients.

During the last week of life sedated patients received more opioids than non sedated patients.

Why I chose this article

In the palliative care setting, patient sedation is still an open issue and sometimes a controversial intervention which is being increasingly used for the management of refractory symptoms at the end of life. In this volume of the Journal of Palliative Medicine, this topic has been much considered.

Some of the adjectives that different authors give in this regard are : total, palliative, controlled, terminal sedation. Moreover it may be used for refractory symptoms, refractory suffering, symptoms difficult to control, intractable existential suffering/distress.

This study, with all the limitations of a retrospective study, confirm that in the last days of life it is not always possible to keep the patient aware and at the same time free of symptoms. Dyspnea, agitation and pain are the main symptoms that most frequently require terminal sedation. Unlike other authors who suggest the use of barbiturates, midazolam is considered the most used and efficient sedative drug even at low doses.


Carla Ripamonti, MD
Member of the Board of Directors, IAHPC

Please visit the following link to read past Articles Of The Month:

Book Reviews

Roger Woodruff, MD

CARING FOR THE DYING Critical issues at the edge of life

Robert M. Baird and Stuart E. Rosenbaum (Eds)
Prometheus Books, 2003
316 pp, ISBN 1-57392-969-7, RRP $US20, £10

This is a collection of twenty-one essays reproduced from a variety of other medical journals, focusing on various aspects of palliative care. The first section deals with the hospice movement, including a comparison of the UK and USA . The second deals with palliative care including the role of palliative sedation and the possibility that legislation may discourage doctors from prescribing adequate analgesia. The third deals with spiritual care for the dying. The final section covers the legal issues in end-of-life care. This book deals with problems we encounter on a daily basis and will be of interest to anyone who works in palliative care and it is useful to have these essays collected together in a single volume.
Find our more about this book here



Lesley Braun and Marc Cohen
Churchill Livingstone, 2004
567 pp
ISBN 0-7295-3682-3
RRP $AU 54.95

Many clinicians are poorly informed about complementary medicines even though, according to the statistics, patients use them by the truckload. This reference guide sets out to bridge that gap and provide scientific information on the 100 most popular herbs and natural supplements. The information on each substance is clearly set out in a manner similar to a drug formulary: chemical components/actions/clinical uses/dosage/toxicity/adverse reactions/interactions/contraindications and precautions/pregnancy use. The material is well referenced. However, it should not be forgotten that the field of herbal medicine remains in its scientific infancy and the appendix at the back of this book dealing with levels of evidence indicates that less than one-third of the indications listed for the various substances are based on clinical trials.

I looked up my favourite contentious issues. I found a balanced discussion regarding the toxicity of kava kava and the benefits of St. John’s Wort. The discussion on shark’s cartilage did not question whether the antiangiogenic molecules known to be in the cartilage would be absorbed after oral consumption. I was pleased to see that hydrazine and laetrile were not included; but when I thought how frequently patients ask me about apricot kernels, I wondered whether they should be included briefly to underline their ineffectiveness and toxicity for the novice in the field.

I found this guide to be well-presented, informative and user-friendly. It will be a useful reference in the hospital library.

Available from



Third Edition (Paperback)
Derek Doyle, Geoffrey Hanks, Nathan Cherny, Kenneth Calman (Eds)
Oxford University Press, 2005
ISBN 0-19-856698-0
1224 pp
RRP £59.95, $US115.00, $AU180.00.

The third edition of the Oxford Textbook of Palliative Medicine, edited by Derek Doyle et al, is now available in a more affordable paperback edition. I reviewed the OTPM 3e when the hardback edition was released a year ago and described it as the gold standard reference for palliative medicine. Nothing has happened to change that opinion.

The paperback edition is considerably less expensive, which I hope will allow wider access to this invaluable resource for all who work in palliative care, worldwide. The comparative prices for the hardback and paperback editions are £150 and £59.95, SUS225.00 and $US115, and $AU485.00 and $AU180.00.

Find our more about this book here


A BURDEN OF SILENCE - My Mother’s Battle With AIDS

Nancy A. Draper
Authorhouse, 2004
142 pp
ISBN 1-4184-5107-X
RRP $US15.50

Nancy Draper has written a moving account of her elderly mother’s battle with HIV/AIDS. The disease was diagnosed in 1988, the result of a blood transfusion given during cardiac surgery several years earlier. The title refers to the fact that her mother felt compelled to keep the diagnosis secret and suffered in silence because of the social stigmas associated with the disease. During the earlier part of her illness, there are numerous examples of the pain and harm caused by insensitive health care professionals, which serve as lessons for those who work in palliative care. Thankfully, her mother finally received some proper palliative care during the terminal phase of her illness.

Find our more about this book here



Barbara Monroe and Frances Krause (Eds)
Oxford University Press 2005,
ISBN 0-19-852909-0,
RRP $US48.50, £24.95

However much we desire to protect children, death and loss are part of life, and dealing with bereaved children is part of palliative care. In her foreword, Dr. Grace Christ says “What makes this book so valuable is that Barbara Monroe and her colleagues have brought together the very latest in individual, group, and community approaches, thoroughly informed by the cutting edge of practice and research in this gradually emerging area of children’s bereavement. Most impressive in this book is the broad range of interventions and special techniques described for work with bereaved children. The use of the Internet, telephone and newer technologies, children’s activity groups, volunteer programs, and self-help groups for caregivers are all vital components of an effective program.” I don’t think I can describe it better.

Reading this book brought back memories that I do not cherish from a long time ago, but my spirit was lightened reading about the enormous and continuing advances made in the management of bereaved children that have occurred since that time. One cannot but admire the inventiveness of some of the interventions described, and the enthusiasm is infectious. I thought the exploration of brief family interventions before bereavement was particularly interesting. Anyone who has anything to do with bereaved children should read this book.

Strongly recommended.

Roger Woodruff
Medical Oncologist and Director of Palliative Care,
Austin Health, Melbourne, Australia
(March 2005)

Webmasters Corner

Anne Laidlaw

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 IAHPC Section:

The Hospice & Palliative Care Clearing House Program is designed to help programs and individuals who are interested in receiving donated medical supplies, journals, publications and helpful items match with donors in developed countries.

Website Visitors :

I am very pleased to announce that has reached an alltime high for the month of February 2005. There were over 1000 visitors per day!
This is due to all your loyal support. For those of you who are not familiar with our website please drop by. We are frequently updating the IAHPC website with news, events and information. Visit:

Special Promotion: If you RENEW OR JOIN IAHPC as a member, you can buy the IAHPC Publication "Palliative Care in the Developing World: Principles and Practice" for only an additional $10.00! Don't Delay Join Today!
After joining or renewing you will have the opportunity to purchase this publication.

Looking for an article or section on our website?
View our Site map:

Visit our Book & Video Shop for your hospice & Palliative care needs.
5 new titles with reviews added this month! See Book Reviews in this newsletter.

Coming Events! Do you have a Hospice & Palliative Care event you wish to promote?
A new year is here please visit our Future Events section to view events and add your event to our website. 5 new listings added this month!

Did you know that you can place the IAHPC home page on your desktop is 4 easy steps using Internet Explorer?

1/ Open your browser to
2/ Go to "FILE"
3/ "SEND"
4/ "Shortcut to Desktop" Drop by often & don't miss out!

Until next month!
Anne Laidlaw
IAHPC Webmaster

Comments/Questions about our website?
Contact us here:

Editor’s Notes

Dr. Farr

News from The Gambia , West Africa

Future Care Hospice was officially registered as a charitable organization on Oct 2004 and started with a home care service with four nurses, one chaplain, five auxiliary nurses and three voluntary workers. Two nurses have since left due to lack of funds to pay for their salaries.
The program includes symptom control, domiciliary care and prevention advice for all sectors of the society who have advanced disease. Objectives of the program are to embark on training nurses to be highly professional and to support the Government effort in the provision of vital preventive and curative drugs for incurable conditions. Future Care Hospice needs financial assistance to further train personnel, expand their hospital services and improve the availability of drugs in order to provide good palliative care. The well being of the people of The Gambia, particularly those with HIV/AIDS and cancer, is dependent on receiving outside help.
Those interested, can contact the Future Care Hospice National President, Mr Abel Igbe.
Mr  Abel Igbe
Future Care Hospice,   National President
P.M.B 366 Serrekunda, The Gambia
[email protected]

Report on Veterans End-of-Life Care

Released by NHPCO and the United States Veteran’s Administration (VA)

February 10, 2005

( Alexandria , Va ) ­ A new report, “VA Transforms End-of-Life Care for Veterans,” has been released by the Department of Veterans Affairs and the National Hospice and Palliative Care Organization. A joint project of the VA and NHPCO, the monograph shares advancements made in end-of-life care for veterans and examines successful hospice-veterans partnerships. The importance of quality, compassionate care for dying veterans and their families is emphasized and some of the unique needs of veterans are described.

More than 1,800 Veterans die every day in this country—that’s about 54,000 people a month representing a quarter of all deaths in the U.S. The moving stories of individual veterans and their families who have benefited from quality end-of-life care are shared and best illustrate the importance and value of this care.

Vietnam veteran Paxson Parsons is a striking presence despite the lung cancer that has placed him under the care of The Hospice of the Florida Suncoast in Largo , Fl. He encourages other veterans with life-threatening illnesses to be open to hospice care. “It’s not about dying—that part’s up to you,” Parsons said. “Hospice is just a helping hand, helping you live with the disease. It’s helped me a lot.”

Thomas Edes, M.D., VA chief of home and community based care, remarked, “We are raising expectations at the national and local levels, so that a terminally ill veteran can go to any VA facility and obtain hospice care. If needed hospice care is not forthcoming, we want them to contact us.”

In 2004, NHPCO provided ten grants to state hospice and palliative care organizations working to establish stronger relationships with VAMCs. A number of other end-of-life advocates have been actively promoting partnerships and collaborative efforts across the nation. The report offers practical advice on ways community hospice providers can work with VAMCs.

“NHPCO has long advocated that veterans should received hospice care and that community hospices should be reimbursed by the VA for the care they provide to appropriate, eligible veterans,” says Judi Lund Person, NHPCO’s vice president for quality end-of-life care. “NHPCO will continue to strongly support this work and relationship building as we look for funding opportunities to further advance the cause.”

A PDF of this report may be downloaded from the NHPCO website,

For More Information

Jon Radulovic
Vice President, Communications
National Hospice and Palliative Care Organization
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
Ph: 703/837-3139
Fax: 703/837-1233

National Council for Hospice & Specialist Palliative Care Services ( UK ) change the name of their organization and extend their mission.

“Welcome to a “special announcement” issue of E-News. Following changes agreed at our AGM on 21st September, the National Council for Hospice & Specialist Palliative Care Services will “today” officially launch under its new name, “The National Council for Palliative Care.” We are extending our mission to promote the provision of palliative care for all who need it.

We will continue to promote improvement in the quality and availability of palliative care to people with cancer, their families and carers, and further promote the extension of palliative care to people with other life threatening conditions drawing, where appropriate, on the lessons learnt with cancer care.

Council will continue to speak with one voice on key issues and to influence government policy. As a multi-professional and collaborative body we will work closely with policy makers, regulators, national charities, user organisations and academic departments to ensure the widest possible dissemination of knowledge and best practice across all sectors.

Our website has been improved and updated and is now at a new address: visit to learn about Council's work, buy publications, book places on an event or join our annual subscription scheme.

Our address and telephone numbers all remain the same, but if you would like to email any of National Council's staff the format has changed, for example:

[email protected]
[email protected]

If you have any questions about the future activities of *The National Council for Palliative Care* please call the HQ team on 020 7520 8299 or email [email protected]

We look forward to working with you and for you in the future.

Voices for Hospice 2005

“An opportunity for Hospice and Palliative Care services to raise funds and increase awareness of their work.”


“ When Voices for Hospices – the World’s largest singing event will take place in churches, village halls, theatres, concert halls, pubs, clubs, schools and a host of other venues right across the globe!

• Each event supports a local palliative care unit, to whom the net profits from the evening are donated.
• Each event brings vital publicity and attracts new hospice volunteers.
• Most important of all - each event allows communities to support their local hospice in a direct way.

Experience the atmosphere at our individual events, as we link together to celebrate all who turn to the hospice movement for help and all who provide it.”

For details please visit their web site:


Hungarian Hospice-Palliative Care Association Launches a monthly e-newsletter.

Hungarian Hospice-Palliative Association, with the support of the Open Society Institute Network Public Health Program's International Palliative Care Initiative and the European Association for Palliative Care.  Our ultimate goal is to contribute to the development of care of the patients and families suffering with serious life-threatening illnesses. This newsletter is to bring us together, to share experiences between experts of the region, but also to show our profile to the world.”

A Russian language version is also available.
To view the newsletter go to URL:

Response from a Clearinghouse Recipient

Dear Liliana,

Please accept my warm greetings and best wishes for you.

Last week we received your donation containing books, journals and educational materials on palliative care through IAHPC Clearing House Program. The materials are extremely useful and we have started a small department library with your donation. It will have free access to the doctors and nurses in our region. Many thanks… I hope you will continue this project with same enthusiasm.

Your donation has also prompted me to start an Academic Club in Palliative Care which will host regular monthly academic programs in palliative care for the medical professionals and volunteers. The program will be on every second Saturdays and will be freely accessible to all concerned. We had a trial run of the program last week and it was successful.

Once again thanking you very much for your encouragement and assistance. I humbly request you to continue the same.

With warm regards,

Medical Officer, Palliative Care Division, Regional Cancer Centre,
Thiruvananthapuram - 695011, Kerala, India.


Children’s Hospice International’s 17th World Congress will be held from
September 29- October 2, 2005 in Salt Lake City, Utah, USA.

Information is now available at
Early Bird Registration is now open!

Children's Hospice International
901 North Pitt Street, Suite 230
Alexandria , VA 22314
Phone: 703.684.0330
Fax: 703.684.0226
email: [email protected]

William Farr, MD
Newsletter Editor


Special Promotion Extended: If you RENEW OR JOIN IAHPC as a member, you can buy the IAHPC Publication "Palliative Care in the Developing World: Principles and Practice" for only an additional $10.00!

Please consider joining the IAHPC's effort to improve palliative care in developing countries. We recently developed a new sliding fee schedule.
Join by Clicking on the Membership Application Link below
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****Thanks to all contributors to this issue.****

7 Ways To Help The IAHPC

William Farr, MD IAHPC Newsletter Editor
© 2005 IAHPC Press