International Association for Hospice and Palliative Care 

Subject: IAHPC Newsroom
2005; Volume 6, No 1, January

Dear Members and Colleagues:

Everyone in the IAHPC sends their most sincere condolences to our members, colleagues and the people of Southern Asia and Eastern Africa as they struggle with the devastation caused by the recent events that have affected and taken so many lives.

The complete IAHPC Online Newsletter has been uploaded to our website at:
http://www.hospicecare.com/newsletter2005/jan05/index.html
Bookmark this link to always view the current newsletter

PDA version located here:
http://www.hospicecare.com/newsletter2005/jan05/pda.html

For those of you celebrating a holiday this month, may it be a safe and happy.


The Table of Contents:

Message from the Chair, Dr. Kathleen Foley
Message from the Executive Director, Liliana De Lima
Article of the Month, Dr. Carla Ripamonti (Italy)
Ethics Page, Dr. Paulina Taboada (Chile)
Dr. Foley named a McCann Scholar
Book Reviews, Dr. Roger Woodruff (Australia)
Burkitt's Lymphoma in Kenya, Dr. J. N. Onyango (Kenya)
Regional Reports:
Asia by Dr. KS Chan (Hong Kong)

Brazil by Dr. Marco Tullio de Assis Figueiredo
Webmasters Corner
Editor's Notes, Dr. William Farr (USA)
Eastern Europe
IAHPC Clearinghouse Program
First Belgrade Symposium
Meetings and Conferences Worldwide

Regards,

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


1. Message from the Chair

Kathleen M. Foley, MD

Dear readers:
Happy New Year and welcome again to the IAHPC Newsletter. This is my first message as the new Chair of the Board of IAHPC. I am honored to have been elected to this position and for being able to continue the great work of the past Chairmen and Board members. IAHPC is a unique organization capable of helping with the promotion and development of palliative care around the World and I am excited to participate in this effort. I am joining a wonderful and talented team of 22 Board members from around the world and look forward to working with them.

I am also proud to announce that the following members have been elected to our Board of Directors for a period of three years:

1. Ednin Hamzah, MD (Malaysia)
Dr. Hamzah is currently the Medical Director and CEO of Hospis Malaysia, in Kuala Lumpur. He teaches palliative care modules in the medical and nursing
schools at the University of Malaya, the National University of Malaysia, and the International Medical University. Dr. Hamzah earned his medical degree from the University of Newcastle upon Tyne, in the UK. He is a member of the Malaysian Hospice Council, the Malaysian Oncological Society, a council member of the Asia Pacific Hospice Palliative Care Network and Vice-Chairman of the Education Committee and Technical Adviser of the Malaysia Breast Cancer Welfare Association and the National Cancer Registry in Malaysia.

2. Nathan Cherny, MD (Israel)
Dr. Cherny is Director of the Cancer Pain & Palliative Medicine Unit in the Dept. of Medical Oncology at Shaare Zedek Medical Center in Jerusalem, Israel. He received his medical degree from Monash University Medical School in Melbourne, Australia and is a Fellow of the Royal Australasian College of Physicians with specialty accreditation in Medical Oncology and Palliative Medicine. He was a pain fellow in the Pain and Palliative Medicine Service, Dept Neurology at the Memorial Sloan Kettering Cancer Center in New York, USA. Dr. Cherny has published extensively and is a current member of the Palliative Care Taskforce of the European Society of Medical Oncology.

3. Gian Domenico Borasio, MD (Germany)
Dr. Borasio is currently Professor and Acting Chairman at the Interdisciplinary Center for Palliative Medicine and Head of the Motor Neuron Disease Research Group in the Department of Neurology at Munich University Hospital in Germany. He received his medical degree from Ludwig-Maximilians-Universität in München Germany, with scholarships from the German Academic Exchange Service and the Cusanuswerk. He later held a post-doctoral position at the Max-Planck-Institute for Psychiatry in the Department of Neurochemistry in Martinsried, Germany. He is Board certified in Neurology and received a Diploma in Palliative Medicine from University of Wales, Cardiff.

4. Margaret O�Connor, RN, PhD (Australia)
Dr. O�Connor currently holds the Vivian Bullwinkel Chair in Nursing Palliative Care in the School of Nursing at Monash University in Melbourne. She received her PhD in Nursing from La Trobe University, her Master of Nursing from Royal Melbourne Institute of Technology and a Bachelor of Theology from Melbourne College of Divinity.

5. Liz Gwyther, MD (South Africa)
Dr Gwyther is currently Coordinator of National Education and Research and Director of the Hospice Palliative Care Association of South Africa (HPCA), and Director of Helderberg Hospice. She received her medical degree at the University of Cape Town and a Diploma and a Master of Science degree in Palliative Medicine at the University of Wales. Currently she is also a senior lecturer in Palliative Medicine in the University of Cape Town and a Member of the Academy of Family Practice of South Africa.

I am also glad to inform you that the following Board members have been re-elected for an additional term:
1. Eduardo Bruera, MD (USA)
2. M.R. Rajagopal, MD (India)
3. Roger Woodruff (Australia)
4. Jan Stjernswärd (Sweden)
5. Carla Ripamonti (Italy)

Please join me in welcoming all of them to IAHPC.
For the next three years we will continue supporting programs in developing countries and focus our efforts on initiatives and strategies that prove to be most effective. Palliative care is in a growing phase globally and as the number of patients requiring our services increase, we will strive to make palliative and hospice care accessible, especially in developing countries.

I encourage you to continue collaborating with IAHPC by either donating funds to the organization or sending us medical supplies and books to our Clearing House Program. I 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


2. Message from the Executive Director

Liliana De Lima

Dear Readers:

Happy New Year to all and thanks to those who sent well wishing messages during this season! We are proud to have so many friends from so many countries of the world.

I look forward to an exciting and productive year under the leadership of Dr. Kathy Foley, our newly elected Chair. I am also glad to announce that Dr. Foley was recently chosen as one of three 2004 McCann Scholars, an honor awarded to medical professionals for their outstanding mentorship in the field of medicine and science. We are very proud to have her as part of our team.

In her Chair's message, Dr Foley presented the new Directors who were elected to the IAHPC Board: Doctors Gian Domenico Borasio from Germany, Ednin Hamzah from Malaysia, Elizabeth Gwyther from South Africa, Nathan Cherny from Israel and Margaret O'Connor from Australia.
Dr. Foley also announced the re-election of Eduardo Bruera (USA), M.R. Rajagopal, MD (India), Roger Woodruff (Australia), Jan Stjernswärd (Sweden) and Carla Ripamonti (Italy) as Directors for three additional years. The Board continues to be the greatest strength of IAHPC. By bringing together these leaders from different countries of the world we are able to develop programs tailored to the needs of patients while taking into account their religious, ethnical and cultural differences.

We continue to receive many mails thanking us for the donation of books and journals as part of the IAHPC Clearing House Program. I am glad that you find these journals useful and that they are now part of your institutional libraries. If you are not listed in this program, please send us an email and we will add your name to our database. You need to be working in a hospice, or an active palliative care program, and be in a developing country. Many thanks again to all the donors to this program, especially to Eduardo Bruera and his colleagues at the Department of Palliative Care at the MD Anderson Cancer Center who gave hundreds of journals to this program.

I have several important announcements:

1. The IAHPC Awards program received many applications this year. We thank all those who participated and for the enthusiastic response to our call. The applications are currently being evaluated by three different committees and the winners will be announced at the end of the month.

2. Elsevier, the publisher of The Journal of Pain and Symptom Management, has announced its new rates for 2005. IAHPC members receive a significant discount on their subscription: price for members is now set at US $189.00, while the regular rate is US $260.00 per year. JPSM
is now the official journal of the National Hospice and Palliative Care Organization (NHPCO) and continues to be one of the leading journals in the field. To subscribe to the JPSM click here.

You must specify that you are an IAHPC member. Please provide your membership number and make sure your membership is active, as they will be checking with us for the status of applicants.

3. 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 email. If your membership expired and you have not renewed it yet, please remember to do so. Membership dues are very important to IAHPC and they help us to continue our mission to help others. Additionally, you can take advantage of our special offer: By renewing before January 30th, you will be able to buy the IAHPC Publication Palliative Care in Developing Countries: Principles and Practice for an additional $10.00. To renew your membership, please go to our website at www.hospicecare.com and click on the IAHPC Membership button in the upper left hand corner.

4. We have divided the institutional membership category in two types: Institutions in developed countries will now pay US $150.00 per year and will automatically sponsor a membership of another institution in a developing country. Institutions in developing countries wishing to apply for membership pay US $40.00 per year. Institutional applications are available here.

If you have any questions about your membership status or how to apply, please send an email to Ms Ana Restrepo here.

Until next month,

Liliana De Lima, MHA
Executive Director


3. Article Of The Month

Carla Ripamonti, MD

Dying to be Home?
Preferred location of death of first-generation Black Caribbean and Native-Born White patients in the United Kingdom

Author(s): Jonathan Koffman and Irene J Higginson

Abstract: Journal of Palliative Medicine 2004; 7/5: 628-636

Data in the literature show that the preferred place of death of a patient with advanced disease is in his/her own home.

The aim of this survey, conducted between 1999 and 2000, was to investigate and compare the following: a) preferences regarding the place of death with respect to their actual place of death and b) the involvement of their families in decision making as far as the location of the death was concerned. The subjects were deceased first generation black Caribbeans living in the UK and native-born white patients (a stratified random sample selected as a comparative group) who had advanced disease (cancer in two thirds p=0.03, with the remainder having circulatory disease, lung or renal diseases).

The survey was carried out in three inner London health districts characterised by economical and social deprivation. Ten months after a patient's death, family members, or friends, close to the patient were interviewed by trained persons using a semi-structured questionnaire. They were contacted in their own homes and were asked a series of unequivocal questions exploring restrictions in the patient's daily life activities and their personal self-reported burden and health status. Categorical and open-ended questions were also asked about issues relating to the place of death and the possible choices they were given in the hospital, or area, where the care was offered and they were also asked about where the death eventually occurred.

A total of 106 informed acquaintances of Caribbean and 110 white patients were contacted with a response of 47% and 45% respectively. The response rates obtained from family, or close friends, representing both groups of patients were low and the reason is probably due to their constant changes of residence. Those interviewed and considered the most appropriate for such an interview were spouses of both the white people (40%) and the black Caribbean patients (28%).

Seventy-six per cent of Caribbean and 86% of white deceased patients presented with restrictions in their daily life activities during the last year life. Caribbeans required more frequent help at night (71% vs 55% = NS), however all the other variables of daily living, as well as, gender, age and the main cause of death, overlapped. Twenty (43%) of black Caribbeans and 27% of white patients (NS) expressed a preference regarding the place of death and this was at home in 85% of the black people (two requested to go back to Jamaica) and 75% of the white population (NS). Of the latter group, another 17% chose hospice compared to only 1 black patient (5%). Of all the answers obtained, no patient wanted to die in a hospital. Fifty-three percent of Caribbean and 56% of native-born patients who wanted to die at home were able to do so.

From the interviews, two interesting points emerged: a) 27 white patients and only 17 black patients had been given enough choice about their place of death (p = 0.03) and b) family/caregivers of Caribbean patients had less choice about the place of death (p = 0.01). Only 9 black Caribbean patients died at home (17 patients had preferred this place), the remaining patients died in hospital including those patients who wished to return to Jamaica.

In total, only one fifth of all patients surveyed died in their own homes; while about 50% of the patients who had wished to die at home died elsewhere.

Why I chose this article

We gather from this study that the wishes of black and ethnic minorities to die at home are not always taken into consideration. Is this because they come from less favored communities with respect to their social/economic status, or their numbers? It would be interesting to know if this is 1) because of cultural differences or prejudices; 2) due to a lack of proper communication that is influenced by ethnicity or preconceptions that bring about the exclusion of these patients, and their families, from the decision making process with regard to the choice for the place of care and death; or 3) is it mainly due to genuine situations of non-practical home care programmes in areas with particularly difficult circumstances or where reimbursement for home care services is not foreseen?

Regards,

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/aom_main.htm


4. Ethics Page

PAULINA TABOADA & RODRIGO LOPEZ

ETHICAL ANALYSIS OF SELECTED CLINICAL CASES (No. I):
PATIENT'S COMPETENCE AND AUTONOMY

CASE HISTORY

An 18 year-old man with acute lymphoid leukemia (ALL) had a partial response to first line chemotherapy. Complete remission was reached in response to second line chemotherapy. During the consolidation therapy, the patient complained about intense headaches associated with nausea and vomiting. An MRI revealed tumor involvement in the CNS. Salvage chemotherapy with corticosteroids was used to reduce cerebral oedema. The patient did not experience any significant symptom relief and severe drug-toxicity appeared.

Due to intractable pain, a high dose regimen of parenteral opioids was proposed to the patient and his parents. The patient accepted this treatment, but the parents hesitated because they knew that it could induce a state of permanent stupor preventing them from communicating with him during his last hours of life. Furthering their doubts was the need for tube-feeding, catheterization of the urinary bladder and finally they were concerned with respiratory problems connected with a state of reduced awareness.

ETHICAL ANALYSIS

1. Define the specific ethical dilemma/s.
Several ethical dilemmas could be analyzed in the above-described clinical situation (e.g. proportionality of treatments, the role of the parents in decision-makings, etc). Nevertheless, we shall focus our attention on the question whether it is ethically legitimate to deprive a patient of his consciousness at the end of life?

2. Refer to the ethical principles involved
The state of awareness is usually considered to be an objective good for the person, since consciousness is required for the exercise of a person's rational and relational capacities (including communication). Thus, intentionally depriving oneself, or another person, of consciousness is commonly regarded as morally wrong, as for instance in the abuse of alcohol or drugs, etc. (non-malfeasance). Nevertheless, it is evident that in medical praxis the deprivation of a patient's state of awareness is sometimes intentionally induced (e.g. anesthesia, etc.). In such cases we do not even question its moral legitimacy (beneficence).
What is the difference? In anesthesia, or analgesia, the action is essentially oriented to beneficence and therefore morally justified by the therapeutic principle. In such cases, while doing the good, the physician knows that some undesired effects cannot be avoided. Is it morally legitimate to perform actions that have (or may have) simultaneously both good and bad results?
On the other hand, if respect for a patient's autonomous decisions is an important ethical principle (autonomy), how could a physician justify the performance of an act that intentionally deprives a patient of his capacity to exercise autonomy, specially if this happens at the end of life (i.e. at one of the most important moments)? Such an act couldn't be done without an extremely serious reason.

3. Collect and analyze ethically relevant clinical information.
Both the diagnosis and the resistance of the disease to the available treatments have been well documented in this case. The MRI showed that the cause of this patient's bad headache was the meningeal infiltration by tumor cells and the concomitant cerebral oedema. As the patient presented severe adverse effects in response to chemotherapy, and since his brain had already been irradiated as part of the LLA treatment, an etiological treatment of the cause of his headache was not possible any more. The response of cerebral oedema to corticosteroids was only partial and the patient's pain was refractory to a progressive escalation of opioids. Thus, the need for strong opioids in high doses seems to be clinically justified in spite of the above-mentioned associated problems.

4. Review alternative courses of action
Three alternative courses of action might be taken in this situation:
- To palliate this patient's symptoms only to the extent that would allow us to preserve his full consciousness. This would practically result in an awaken patient at the expense of an invalidating headache.
- To provide opioids in a dose needed to control this patient's pain. This would practically mean to induce a state of permanent deep stupor at the end of his life.
- To choose an intermediate level of treatment that would preserve a certain level of awareness sufficient to interact with his relatives. This would practically mean incomplete pain management.

5. Suggest an ethical solution
The principle of double effect sheds light on the ethical dilemma related to this case, namely the need to unertake an action that will have well-known and unavoidable bad effects as using opiates at the end of life knowing that this may negatively affect the patient's state of awareness, blood pressure and resiration. There are, indeed, many situations in palliative medicine in which one cannot do good without als causing undesired bad effects. The principle of the double effect sets the ethical criteria for thelegitimacy of actions that have both good and bad effects:
) The performed act has to be morally good (e.g. analgesia).
b) The good effect cannot be reached by means of the evil effect.
c) Only the good effects can be directly intended; the bad effects have to be only tolerated (asunavoidable) and never directly intended.
d) Tere needs to be a due proportion between the good and the bad effects.
Theprinciple of double effect forbids the achievement of good ends by wrong means, according to the comon saying 'the end does not justify the means'. In our case study, the act of analgesia with high dosepiates is legitimized by the simultaneous fulfilment of the four conditions set by the principle of double effect. Indeed, the fulfilment of four of these conditions are captured also in the traditional way of understanding the role of sedation in palliative care, as stated - for instance - in the Oxford Textbook of Palliative Medicine (p. 407) - "The goal of palliative terminal sedation is to provide the dying patient relief of otherwise refractory, intolerable symptoms, and it is therefore firmly within the realm of good, supportive palliative care and is not euthanasia.”

When used to alleviate refractory physical or psychological symptoms near to death, this praxis has been also called "palliative sedation", defined as the deliberate administration of drugs in the dose and combination required to reduce a terminal patient's consciousness to the extent needed to adequately alleviate one or more refractory symptoms with the patient's explicit, implicit or surrogate consent (Cf. SECPAL). Key aspects of this definition are the ideas that sedation is used 1) with a therapeutic intention, 2) as a last resort, i.e., when all other alternatives have failed to provide adequate symptom control, 3) only to the extent it is strictly needed, and 4) after a process of ethically valid informed consent. In other words, the definition stresses the importance of securing a due proportionality in the level to which a patient's state of awareness is reduced. As long as the deprivation of consciousness is tolerated only to the extent needed to control refractory symptoms the classical doctrine of double effect applies.
6. Consider the best way of implementing the suggested solution

If we are going to use high dose opiates, we would obviously need to simultaneously administrate laxatives. And, if we know that this kind of analgesia will deprive the patient of his state of awareness, we will have to take care of his hydration and nutrition (adjusting it to the actual needs determined by his terminal condition). This would probably require the concomitant installation of a urinary tube. Nevertheless, to completely withdraw hydration and nutrition may represent "euthanasia in disguise”, especially if it is done with the intention to hasten his death. (Cf. Tannsjo T (ed): Terminal sedation: Euthanasia in Disguise? Kluwer, Dodrecht, 2004).

Dr Paulina Taboada
Profesor Centro de Bioetica
Pontificia Universidad Catolica de Chile
Alameda 340 Correo Central 1
Santiago, Chile


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

http://www.hospicecare.com/Ethics/monthlypiece/ethics_pom_main.htm


5. Dr. Foley named a McCann Scholar

Kathleen M. Foley, MD is named a 2004 McCann Scholar

The McCann Scholars award is "the only national award by a private foundation designed to recognize outstanding mentors in medicine, nursing and science. Three Scholars were recognized this year, they are 1) Kathleen M. Foley, MD, 2) Mary D. Naylor, Ph.D., R.N., FAAN, Professor of Nursing, Director, RAND/Hartford Center for Interdisciplinary Geriatric Health Care Research, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania and 3) Jeannette E. South-Paul, M.D., Professor and Chair, Department of Family Medicine, Medical Director, University of Pittsburgh Medical Center Health System, Division of Community Health Services, Pittsburgh, Pennsylvania.
The Joy McCann Foundation Chair, Joy McCann Daugherty of Tampa, Florida said, "Our Foundation wants to promote the concept of mentoring and nurture the practice of mentoring by calling attention to outstanding mentors and rewarding their efforts.” "Having dedicated, inspirational mentors is crucial to developing leaders in medicine, nursing and science. Outstanding people often become outstanding from the unselfish help of others,” noted Dr. Robert M. Daugherty, McCann Foundation Co-Chair. "There was no significant national reward for educators who take the time to inspire others, so we designed such an award.”
The press release states, "Kathleen M. Foley, M.D., Professor of Neurology and Neuroscience and Professor of Clinical Pharmacology, Weill Medical College of Cornell University, Attending Neurologist, Memorial Sloan-Kettering Cancer Center, New York, New York

Dr. Foley is a leading authority on pain and its management especially for those with cancer and advanced illnesses. She has played a unique role in the mentorship and teaching of physicians, nurses, and health professionals around the important values of the relief of suffering and respect for patients. Dr. Foley is known as a driving force in mentoring and developing young physicians and health professionals willing to commit their professional lives to advancing palliative care. One of her colleagues says "she is a mentor to all in her field and pays attention to her flock.


6. Book Reviews

Roger Woodruff, MD (Australia)

RELATING TO THE RELATIVES
Breaking bad news, communication and support

Thurston Brewin with Margaret Sparshott
Radcliffe Medical Press, 1996
177pp
ISBN 1-85775-081-0
RRP £21.95

Here is a book that covers all aspects of communicating with the relatives in oncology and palliative care. Originally published in 1996, Amazon.co.uk indicates that it is still available, and so it should be. The information about communication in this book is steeped in clinical experience and common sense, rather than tied to any rules. The text is enhanced by lists of �key points� and �useful options and reminders�. Numerous quotations from actual interviews are effectively used to demonstrate different points. The last chapter on dealing with the angry relative is particularly useful. This book will enable anyone working in oncology and palliative care to communicate better with the relatives.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

DELIVERING CANCER AND PALLIATIVE CARE EDUCATION

Lorna Foyle and Janis Hostad (Eds)
Radcliffe Publishing Ltd, 2004
235pp
ISBN 1-85775-978-8
RRP £27.95

Education in cancer and palliative care has evolved rapidly in recent years, at the same time that there has been a revolution in electronic information delivery. So what are the bet strategies and methods for delivering such education? Just as importantly, how do we enable our students to be independent learners and critical thinkers?

This book is directed at those responsible for cancer and palliative care education, both primary and on a continuing basis. It describes a wide range of methods and techniques, covering a spectrum of educational topics in palliative care. Chapters cover the relationship between education and clinical governance, education about �morphine myths�, death anxiety, spirituality and life review, psychoneuroimmunology, aromatherapy, and why and how palliative care education should be evaluated. This book will be a welcome and most useful resource for educationalists in the field of cancer and palliative care.

ORDER Through Radcliffe
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THE OXFORD DICTIONARY OF MEDICAL QUOTATIONS

Peter McDonald
Oxford University Press, 2004
212 pp
ISBN 0-19-263047-4
RRP £25, $US50.

This is a wonderfully stimulating and entertaining collection of quotations covering all aspects of medicine, from antiquity to the present. You can browse, reflect, smile, and even laugh out loud.

Here�s a tiny taste

Before you tell the �truth� to the patient, be sure you know the �truth� and that the patient wants to hear it.
(Chinese Proverb)

He who fears to suffer, suffers from fear.
(French Proverb)

We palliate what we cannot cure.
(Samuel Johnson 1709-84)

A medical revolution has extended the life of our elder citizens without providing the dignity and security those later years deserve.
(John F. Kennedy 1917-63)

Body and soul cannot be separated for purposes of treatment, for they are one and indivisible.
(Dr. C. Jeff Miller 1874-1936)

Drug therapies are replacing a lot of medicines as we used to know them.
(George W. Bush)

Wonderful reading!

Roger Woodruff
Medical Oncologist and Director of Palliative Care, Austin Health, Melbourne, Australia
September 2004


7. Burkitt's Lymphoma  IN
KISUMU - NYANZA PROVINCE - KENYA

Dr. J. N. Onyango (Kenya)

A British Pathologist, Dennis Burkitt, who was then working at the Mulago Hospital in Kampala, first described Burkitt's lymphoma in 1958. It was first described as a sarcoma of the jaws in African children because of its high occurrence in the facial area of the mandible and maxilla. It is a tumour mainly confined to a belt across the African continent approximately 15 degrees north and south of the equator and mainly located below 1500 meters above sea level, and where the rainfall is over 50cm per year and temperatures below 27 degrees Celsius. The frequency of Burkitt's lymphoma in the above region is more than 50% of all the malignant tumours in children between the ages of 3 to 15 years, especially in East Africa, while in Nigeria it is said to be above 70% in the same age bracket.

The sites mostly affected are the jaws, the ovaries and retroperitoneal tissues in female children with the abdominal Burkitt's lymphoma. The Central Nervous System is also involved in about 30% of all the new cases and is accompanied by cerebrospinal fluid (CSF) involvement. This means that 30% of the patients present with stage 4 disease. Recurrence in previously treated cases involving the CNS is also frequent.

The Nature of Burkitt's lymphoma

Burkitt's lymphoma is a very rapidly growing tumour with a potential doubling time of 24 hours. This means a tumour of 3 cm would grow to 6 cm in 24 hours. Histological appearance if the Burkitt's lymphoma is characterised by the presence of undifferentiated lymphoreticular or primitive stem cells. Macrophages are frequently spread amid the tumour cells forming the so-called "starry sky” pattern.

Serological investigation by Dr. J. Onyango, (the author) and Prof. George Klein and Dr. Henle of Stockholm and USA respectively showed the presence of antibodies against the EBV (Epstein Barr Virus). This means that etiologically the Burkitt's lymphoma is a viral disease that occurs in children whose immunity has been lowered by repeated malarial infections. This is the reason for the disease occurring after 3 years of age when the natural immunity has been affected by the malarial infections.

TREATMENT:

Burkitt's tumour being a malignant lymphoma is expected to be very radiosensitive. However, routine daily fractional radiation therapy provides no regression of the disease because of its high rate of growth. It is because of this that Dr. J. Onyango and Dr. Torsten Norin, both working at the Kenyatta National Hospital in Nairobi, Kenya, developed a radiation protocol known as "Superfractionation” This means that the patient is given three fractions daily at 9am, 12 noon and 3pm, 5 days/week. This gives good results with complete regression of the tumour in almost 100% of the cases. It is, however, not possible to give radiotherapy in the Nyanza Provincial Hospital because of lack of a Radiotherapy Unit.

The second best treatment is chemotherapy. This started as a single drug therapy, but has now been developed into a multi-drug therapy. The patients are given 6 courses of intensive chemotherapy, usually consisting of cyclophosphomide (Endoxan), oncovine (Vinctistine) and adriamycin (Doxorubicin) at 3-weekly intervals. This is followed by maintenance doses, which may include drugs like Cylosar - Arabinocide, Prednisone and tablets of metacapurine. For CNS involvement, intrathecal methotrexate or total CNS irradiation is usually given.

Like most malignancies in Kenya, Burkitt's lymphoma is in many cases diagnosed late, however a great number of children do benefit from palliative care of their disease. Severe pain is most common in all the affected regions. The majority of patients require initial pain control using strong analgesics while giving chemotherapy. In almost all cases, morphine administered by syringe is very useful until the tumour partially, or totally, regresses because of the chemotherapy. In very advanced cases, strong analgesics are required throughout for good palliation. Other drugs against various complications and good nourishment are also provided.

STATISTICS FOR 2004

Patient visits at our Children's Ward for chemotherapy - monthly reports.
Click here to view stats online

As is seen in the stats list, the ratio of male to female patients is 2:1 in our cases, and this is true all over Africa.
Our plan is to have a special ward for the management of malignancies of children including leukaemia. At present there is only a single room for them in the general children's ward. This is inadequate and some children who have recovered from the acute illness are given chemotherapy as outpatients


8. Regional Reports

Asia by Dr. KS Chan (Hong Kong)

Coming Hospice/Palliative care activities in the Asia region

SINGAPORE

27-29 January, 2005
15th Post Graduate course in Palliative Medicine

For more information, please contact: [email protected]

INDIA

GUWAHATI, ASSAM

11-13 February, 2005


12th International Conference of the Indian Association of Palliative Care Conference
"Community Participation in Palliative Care”

For more information, please contact Dr Dinesh Goswami, Organizing Secretary.
[email protected] or [email protected]

The 6th Asia Pacific Hospice Conference

KOREA

16-19 March, 2005
Sheraton Grand, Walkerhill Hotel, Seoul

"Changing Society & Human Life with Hospice Palliative Care”
Advance registration: 31 Dec., 2005

For program & registration: www.aphc2005.org

2nd Global Summit of National Hospice & Palliative Care Association

SEOUL, KOREA

15-16 March, 2005

This will be a pre-conference meeting before the 6th Asia Pacific Hospice Conference in Seoul, Korea. The first meeting of representatives from hospice & palliative care umbrella bodies or National Associations were held in Hague in March 2003.

For more information, please contact Nick Pahl: [email protected]

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

Brazl by Dr. Marco Tullio de Assis Figueiredo

I have the following news from Brazil, regarding the 4th trimester of 2004.

Dr. Leonardo Oliveira Consolim, was appointed as Director of the Palliative Care Service of the São Judas Hospital (Oncology), Barretos, SP. This palliative care unit has 40 beds and an outpatient service. In the beginning it will not provide home assistance because Barretos is a small town and has very few terminal cases of cancer. São Judas is a state and regional hospital, and home attendance will have to be specially designed to work well. Dr. Consolim is a GP with some experience in Geriatrics and a 1 year training at the PC unit of Hospital das Clínicas de São Paulo (University of São Paulo). He was highly commended by the PC staff of HC-USP.

After several months of conversations, the Hospital do Servidor Publico Estadual de São Paulo, accepted groups of two medical and nursing graduate students of The Federal University of São Paulo-Paulista School of Medicine for a10 day visit to the PC unit (outpatient, home care and hospital) during the vacation months of January, February and July. This is an experience long planned by Dr. Marco Tullio de Assis Figueiredo and it will be the first in Brazil.


9. Webmaster's Corner:

Anne Laidlaw

Welcome to the Webmaster's Corner!
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10. Editor's Notes

William Farr, PhD, MD

 

To our Friends and Colleagues in Southern Asia and Eastern Africa

The Board of Directors, Officers and Members of the IAHPC send their condolences to our colleagues and to the families of the victims of the earthquake and tsunamis that recently devastated several countries in Southern Asia and Eastern Africa. We are deeply moved by the magnitude of the destruction, the degree of suffering and the devastating losses that so many people have experienced. We hope that they will receive the all the support they need as they cope with the aftermath of this horrible tragedy.

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Romania

Daniela Mosoiu, MD, founder and medical director of Hospice Casa Sperantei in Brasov, Romania, and a member of the IAHPC Board of Directors, recently visited the Pain and Policy Studies Group (PPSG) at the University of Wisconsin's Comprehensive Cancer Center in order to receive assistance in developing a process of improving access to opioid pain medications for the Romanian people. Along with four of her Romanian colleagues the purpose of the visit was to work with the Center to develop initiatives to improve palliative care and most importantly to provide for a workable regulation concerning opioid use in pain management.

Corissa Jansen describes in her article the difficulties that Romanian physicians encounter when prescribing opioids analgesics for pain control. Her article is published in the University of Wisconsin's Health News and Events website.
To read it click here

Our Romanian colleagues are also hard at work with Romanian government officials to ensure that old regulatory barriers will no longer impact patient care negatively. We wish them well.

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Eastern Europe

The European Association for Palliative Care East now publishes its newsletters on it's website at URL: http://www.eapceast.org/

The December issue covers: Celebration of Palliative Care Day in Lithuania; activities in Serbia and Croatia; the Summer School 2005 - "Social research methods relevant to end of life care” offered in the UK; Help the Hospices International Grant (Deadline January 17, 2005); Updated manual of Palliative Care published by the IAHPC and available on its web site; and information about the 9th EAPC Congress in Aachen Germany 6-10 April, 2005.
For details please visit their website: http://www.eapceast.org/

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IAHPC Clearing House Program

Because of the generosity of IAHPC members and colleagues we are able to give donated books, journals and supplies to palliative care/hospice organizations in developing countries. For more details about this important aspect of our work and how to donate, please go to our web site at the following URL: http://www.hospicecare.com/clearinghouse_testimonials.htm


The following are notes we received from those who have benefited from this program.

From Malaysia

"Dear Liliana,

We have received the copies of journals and publications that IAHPC sent to us on 22 November 2004. Thank you for so kindly donating them. They will be really useful for our staff and volunteer's reference.”

With best wishes.

T. Devaraj
Vice Chairman
National Cancer Society of Malaysia
Penang Branch
Chairman
Malaysian Hospice Council

From India

"Last week we received the donated books, journals and educational
materials donated by IAHPC from the IAHPC Clearing House Program. Thank you very much, the books are now available in our library for our staff, physicians and nurses. Many, many thanks for your great help to Aastha- Hospice, I would also like to tell you that now We are starting a full time 10 bedded hospice with all facilities from this new year, earlier we had just a palliative care OPD, day care service and just 4 beds. Thanking you again for your continued support."

Dr. Abhishek Shukla, MD
Aastha- center for Geriatric Medicine,
Palliative care Hospital & Hospice.
19. Jan.2005

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IAHPC joins others to support the first Belgrade Supportive Care Symposium

..."The international education Symposium "Supportive care in cancer patients” was organised in Belgrade (October 2nd, 2004), under the auspices of the Institute for Oncology and Radiology of Serbia and Multinational Association of Supportive Care in Cancer (MASCC).

The goal of the Symposium was to promote supportive care discipline in the region of Central and Eastern Europe. The need for the course was identified through requests from oncologists and other relevant clinicians involved in the care of patients with cancer. The main learning objectives were: 1) to increase awareness and applicable knowledge of supportive care, its goals and achievements, 2) to highlight the concept of quality of life in oncology, 3) to cover evaluation and management of common physical symptoms (cancer pain, dyspnoea), complications of cancer (bone metastases, anorexia / cachexia) and of major toxicities induced by anticancer treatment (nausea and vomiting, myelosupression, febrile neutropenia), and 4) to present philosophy and the key concepts of end of life care. The course was also intended to inspire and motivate the audience with the best international lecturers. Topics were reviewed and discussed by the many leading international experts willing to donate their time and experience to this symposium.

The Symposium had 154 participants, mainly physicians (oncologists, internal medicine specialists, general practitioners, geriatricians, young doctors in training for general oncology), but also nurses and other relevant clinicians (clinical psychologists) from Serbia and Montenegro and other European countries (Bosnia & Herzegovina, Bulgaria, Greece, France, Slovenia)...

The Symposium was supported by: Serbian Medical Association-Section for Oncology, Ministry of Health- Republic of Serbia, Ministry of Science and Environmental Protection - Republic of Serbia, French Ministry of foreign affairs, International Association for Hospice and Palliative Care (IAHPC) and European Association for Palliative Care (EAPC) Centre for Palliative Care in Eastern Europe (EAPC-EAST)."

Dr Svetislav Jelic, Chairman of the Symposium
Dr Snezana Bosnjak, Co-chairman

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Meetings and Conferences

Ethics of Choice Conference

22nd February 2005
Kings Fund, London UK

Recent Department of Health (UK) guidelines place choice for patients and carers at the heart of healthcare delivery. Such choice has always underpinned specialist palliative care practice. However, extending such choice to all patients at the end of their lives challenges existing palliative care services. This one-day conference seeks to explore the meaning and application of choice within palliative care. For further information contact Sofia Rahman, Events Co-ordinator, The National Council for Palliative Care, at: [email protected]


Palliative Care in Care Homes: The Way Forward

The National Council recently published ‘Palliative Care in Care Homes for Older People', a publication identifying the current nature of palliative care provision for older people living in care homes, as well as the challenges that we face in seeking to meet older peoples needs. The National Council is holding an event which intends to bring interested parties together to discuss and respond to the publication and make recommendations for the next steps required to develop palliative care for care home residents. The event, on the 9th February 2005, is at the Coors Visitor Centre, Burton on Trent, England. Speakers include Martin Green, Chief Executive, (ECCA), Katherine Froggatt (the author) and Tom Owen, Policy Manager (Help the Aged) as well as The National Council's Chief Executive, Eve Richardson. For further information about the event or the publication, please e-mail Sofia Rahman: [email protected]

 

Update Program: HIV/AIDS, Care of Older Adults, and Palliative and End-of-Life Care

March 6-13, 2005
Cruise To Eastern Caribbean "Seminar At Sea "

Wilson Shepard Education Associates
Toll Free 1-877-517-4227
Rochester, New York 14618
(585) 473-7804 Fax (585) 271-5443
http://www.wshep.com/program.html

 

14th International Conference on Cancer Nursing
Sponsored by the International Society of Nurses in Cancer Care

September 27-October 1, 2006
Sheraton Centre, Canada

For information, contact:
Malachite Management inc.
570 West 7th Ave, Suite 402
Vancouver, BC
Canada, V5z 1B3
Ph +1 604 874-4004
Fax: +1 604 874-4378
Email: [email protected]

 

MP PLUS

2-20 May 2005
St Christopher's Hospice, London UK

MP Plus is an exciting and dynamic new course designed for health or social care professionals who may be leaders in their field, now or in the future, and wish to implement local palliative care services. The course includes the established Multi-Professional week and in addition a week of clinical attachment provides an opportunity to see palliative care in practice. Opportunities will be provided to look at issues such as the Management of Change, Communication, Teaching and Presentation Skills.

St Christopher's invites applicants from developing countries or those with a financial need to apply for a limited number of bursaries.

For more information and the application details, contact Education Administration
Phone: (+44) (0) 208 768 4656
Fax (+44) (0) 208 776 5838
Email: [email protected]
Website: www.stchristophers.org.uk

 

2005 National Palliative Care Conference

September 25-28, 2005
Edmonton, Alberta

The Canadian Hospice Palliative Care Association and the Palliative Care Association of Alberta are proud to present the 2005 national palliative care conference in Edmonton, Alberta September 25-28. This year's conference, Kaleidoscope: dialogue & diversity in Hospice Palliative Care will showcase a variety of topics representing the diversity of hospice care in Canada.

The call for abstracts deadline is January 21, 2005. Submit an abstract; share your experience and knowledge by presenting at the 2005 national palliative care conference in Edmonton, Alberta.

Abstracts and Invited Workshops in a Diverse set of Themes including:

Palliative Care in non-cancer populations
Psychosocial Support
Research in Palliative Care
Complimentary Management
Rural Issues
Symptom Management
Spiritual/Cultural Aspects
Family Caregivers
Program Plans
International Palliative Care Issues
Education
Ethics
Volunteers
Pediatrics

Remember, the call for abstracts deadline is January 21, 2005.
To access information on abstract submission visit http://www.chpca.net/events/conference.htm

William Farr, MD IAHPC Newsletter Editor


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Offer valid until: January 30, 2005.

http://www.hospicecare.com/join.htm

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 this secure Membership Application -
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