International Association for Hospice and Palliative Care 

IAHPC Newsroom 2005; Volume 6, No 9, September

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:

The September issue of the IAHPC newsletter is now on our website at URL:
http://www.hospicecare.com/newsletter2005/sept05/

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 the subscription page to receive our free monthly newsletter.


In this issue:

Regards,

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


Condolences to the Gulf Coast victims in the US

The IAHPC Board of Directors, officers and staff members express their deepest condolences to all the victims of the Hurricane Katrina which has devastated a large portion of the Gulf Coast Region including the city of New Orleans in the USA . We are saddened at the devastation caused by the hurricane and send our sympathies to the residents of the area, the families of those who have lost their lives, the injured and to all who have been affected by this terrible disaster.


Message from the Chair
and Executive Director

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

Welcome back to our Newsletter. This month we have several important announcements:

First, we are glad to announce that IAHPC is initiating an open call for nominations for six seats to the IAHPC Board of Directors. Details on how to apply and the requirements are included in this letter. Deadline for nominations is October 30th, 2005. We encourage members to recommend candidates from countries around the world and from various disciplines. Candidates and nominators both need to be active IAHPC members. If you are not a current member, we invite you to join IAHPC and participate in this important process. To join IAHPC, click here

Last month IAHPC received a grant from the National Hospice and Palliative Care Organization (NHPCO) in the USA to continue the partnership of the two organizations' in the Faculty Development Program at Amrita Institute of Medical Sciences, in Kochi, Kerala, India. We are very grateful for NHPCO’s grant and especially with Dr. Stephen Connor, Vice President of the Division of Access to End-of-Life Care for his continued support and interest in this program. Amrita is the only medical school in India that is offering formal training in palliative care to postgraduate students. The program is under the coordination of Dr. Gayatri Palat with the supervision of Professor MR. Rajagopal.

This issue of the newsletter includes several reports from palliative care clinicians who have traveled either as Fellows or Scholars with funding provided by IAHPC. One is a Traveling Fellowship Report from Beris Bird, RN on her travel to Kijabe Medical Center in Kenya where she spent two months teaching palliative care and working with the hospital staff. This was the third visit of Ms Bird to the Center. The Traveling Scholarship Reports are from Dr. Reena Mary George of the Palliative Care Program at the Christian Medical College in Vellore, India who participated in the International Conference on Grief and Bereavement in London, England; and from Dr. Jorge Eisenchlas, professor of Palliative Care in Argentina, who traveled to the Research Summer School on End of Life Care at the International Observatory in End of Life Care in Lancaster University, England. We are glad to have been able to support these extraordinary individuals as part of our goal to improve education in palliative care. Their reports are an incredible testimony of the needs in palliative care education in developing countries.

We are glad to announce that we have awarded two additional Traveling Scholarships and two Traveling Fellowships this month. The Traveling Scholarships were awarded to Kalpana Baniya, RN, from B.P. Koirala Memorial Cancer Hospital , in Bharatpur, Nepal and Dr. Eva Duarte from the National Cancer Institute in Guatemala City, Guatemala . Both will be attending the 9th Annual Interdisciplinary Approach to Symptom Control, Palliative and Hospice Care sponsored by the Department of Palliative Care at the UT MD Anderson Cancer Center in Houston. Both will also spend two weeks as clinical observers at the Department of Palliative Care in the MD Anderson Cancer Center, learning at the bedside of patients as well as the operational structure of a palliative care department within a cancer hospital.

The Traveling Fellowships were awarded to Dr. Richard Harding, Lecturer in Palliative Care at King's College in London, who will spend time in October teaching research methodology in palliative care to the Palliative Care Team at the Tomas Romay Health Center in Cuba. The second Traveling Fellowship was awarded to Dr. Ahmed Elsayem, Assistant Professor at the Department of Palliative Care at the University of Texas M.D. Anderson Cancer Center in Houston, who is presently spending one month teaching palliative care at Khartoum Teaching Hospital & University of Khartoum, Sudan. This is a significant visit, as there are no palliative care initiatives in Sudan and the University is now interested in establishing a clinical and teaching program for medical students. Dr. Elsayem is fluent in Arabic and as a native of Sudan and a palliative care expert; he will establish an ongoing partnership with the University of Khartoum to continue supporting this initiative in the future.

The World Hospice and Palliative Care Day (WHPCD) has kept us busy. The group at Help the Hospices in the UK has done an incredible job of coordinating the event and generating an enormous interest from countries all around the world. Many concerts, exhibitions, symposiums, movie festivals and other activities will take place in towns, cities, hospitals and theaters. Thanks to a grant from the Open Society Institute, IAHPC has been able to fund programs in Brazil, Cuba, Colombia, Mexico, Argentina, Guatemala, Philippines, Uruguay and Moldova to support activities to celebrate the Day. We invite all our readers to participate in the celebration of the WHPCD by planning activities in their institutions, hospices and communities. To learn more about the Day and how you can become involved, go to www.worldday.org

Next week we will be in a meeting on Palliative Care in Cancer in Budapest, during which we will discuss with colleagues, from various Eastern European countries, strategies to implement effective palliative care programs in cancer. The meeting is sponsored by the International Palliative Care Initiative from the Open Society Institute Network Public Health Program and will include the participation of the WHO Cancer Control Program as well as representatives of 20 different countries in the region. We look forward to the outcomes of this meeting. Some of the topics that will be covered include developing national standards of palliative care, establishing effective programs and models of care, drug availability and policy issues, palliative care in the public health policy, certification in palliative care and funding issues.

Our website is currently undergoing a major renewal and redesign of all its pages. Anne Laidlaw, our webmaster, and her staff at Alou Web Design are working very hard to keep our site current and able to meet the demands of the thousands of visitors we register every day. We are also constantly adding resources in palliative and hospice care to make them available to the global palliative care community. This month we have renewed our Resources section, which includes the following: Administrative and Program Development Tools; Assessment and Research Tools; Educational Resources; Employment Listings; Teachers in Palliative Care; Policy and Advocacy Tools; Standards in Palliative Care and Treatment Guidelines. Visit this section and if you know of a tool or resource that is not listed in here, let us know. We will be happy to add a link to an existing page or upload it in our site if it’s not available in the Internet.

Finally, we are happy to announce that IAHPC Press is now selling Dr. Derek Doyle's publication: The Platform Ticket ­ Memories and Musings of a Hospice Doctor, The Pentland Press Limited, Durham, UK,  1999 at US $15 for developing countries and US $20 for developed countries. If you would like to read a review of the book, please click here. A portion of the sales will be donated to support our mission. We invite you to order this great publication and help the promotion and dissemination of palliative care in the World. To order click here

Until next month,

Kathleen Foley, MD
Chair, Board of Directors

Liliana De Lima, MHA
Executive Director


Call for Nominations to the
IAHPC Board of Directors

The IAHPC is proud to announce a public call for nominations to the IAHPC Board of Directors. IAHPC Members are encouraged to send in nominations of palliative care and hospice care leaders with demonstrated interest in the development of international palliative care initiatives and issues.

Candidates may be located in any country and have various professional backgrounds (medical, nursing, psychology, social work, administrative, policy, chaplaincy, etc) and must fulfill the following criteria:

1. Both nominee and nominator must be active members of the IAHPC.

2. Have demonstrated work and commitment in palliative/hospice care in his/her field

3. Be a recognized leader and currently holding a senior position within a hospice, hospital, palliative care/hospice organization or any other entity

4. Have demonstrated willingness to participate and work in the board activities

5. Have demonstrated interest in international palliative and hospice care issues

6. Be able to effectively communicate in English

7. Candidates must have access to the Internet and hold an active email account because most Board discussions, and votes, are carried out via email.

The maximum number of candidates that can be nominated by each member is one. Deadline for nominations is October 30th, 2005. To submit a nomination, please send a copy of the CV of the candidate, plus a brief paragraph describing how the candidate meets the criteria via email to the office of the Executive Director at [email protected]

The term of the new members will begin on January 1st, 2006 and will end December 31st, 2009. The new directors will be elected by a vote of the current Directors. New members will be announced early December 2005.

A copy of the IAHPC bylaws may be requested via email at the same address.

We look forward to your participation in this process and encourage you to nominate qualifying candidates.

IAHPC Board of Directors


Article of the Month

Carla Ripamonti, MD
(Italy)

Opioid purchases and expenditure in nine western European countries: “Are we killing off morphine?”

Author(s): F. De Conno, C. Ripamonti, C. Brunelli
Abstract:  Palliative Medicine 2005; 19: 179-184

The primary aim of this study was to evaluate the trend in the amount of sales of four opioid analgesics (codeine, tramadol, morphine, fentanyl) from wholesalers to community pharmacies as an indicator of opioid consumption during 2001, 2002 and 2003 in nine European countries (Belgium, Germany, Ireland, Italy, the Netherlands (NL), Norway, Portugal, Spain and the UK). Particular attention was given to morphine compared to the others. The secondary aims of the study were to compare: a) the amount of each drug purchased by different countries in 2003; b) the average price for each drug in the different countries in 2003; c) and the total expenditure for each opioid from 2001 to 2003.

Data from the Statistical Report on drugs purchased by pharmacies was supplied by IMS Health for our investigation.

In the period 2001-2003, the percentage increase in the purchase of fentanyl and tramadol was considerable, that of morphine was the lowest in all of the countries and was 3 times lower than transdermal fentanyl. In all of the countries considered, there was an observed yearly increase of about 7% in the sales of morphine in both periods. The morphine purchases varied from the maximum increase in Norway (+ 15 % in 2002 vs 2001) to the maximum decrease in Ireland (-11% in 2002 vs 2001). Fentanyl purchases registered a global increases of +25% and +15% in the two periods (all countries together), and reached a maximum in Italy (+70% and +35%), followed by Spain (+37% and + 14%), and the UK (+ 29% and 19%). It could also be observed that the percentage increase of fentanyl purchases was lower in the second period in all countries except the NL.

With regards to the percentage purchase variations of weak opioids in all the countries considered, codeine purchases showed a slight increase similar to morphine in 2003 vs 2002. However, there was a drop in codeine purchases in 2002 vs 2001 and an increase in 2003 vs 2002 in Belgium (-48% and + 7%), in Germany (-8% and + 9%), in Spain (-8% and + 17%). On the other hand, tramadol purchases showed a substantial increase in all the countries together (+11% and +16%) with a marked increase in Norway (+45% and +24%), and moderate increases (from + 15% to + 18%) in Italy , the NL, Spain , the UK . Portugal showed a substantial stability of all opioids purchase data. The largest consumer of codeine was the UK and for tramadol it was Belgium.

There was a high variability in the costs of all the opioids among the different countries. In 2003 the cost of tramadol was highest in Italy (5.95 Euros/g) and lowest in Norway (2.54 Euros/g). Italy was also the country where codeine was the most expensive (14.9 Euros/g) and Norway the country in which the opioids considered were always among the cheapest. Morphine cost ranged from 32.33 Euros/g in Germany to 8.7 Euros/g in Norway ; fentanyl from 2909.00 Euros/g in Germany to 1701.30 Euros/g in Italy.

The trend of expenditure (which depends on both the cost and the quantity consumed) showed a reverse in tendencies. In the year 2001 the highest expenditure was for codeine (69.9 million Euros) followed by fentanyl (55.13 million Euros) and tramadol (54.27 million Euros). In the year 2002, expenditure for codeine and fentanyl are almost equivalent (respectively 70.26 and 70.65 million Euros) whereas tramadol expenditure is about 58.49 million Euros. In the year 2003 expenditure for fentanyl reached the highest level (81.47 million Euros). The expenditure for morphine is the lowest in all the three years considered (from 24.9 to 25.78 million Euros) and corresponds to about 1/3 of expenditure of the other three opioids.

Why I Chose this article

The results of this study open up many questions:

1. Are we killing off morphine?

2. What factors influence opioid purchasing and costs in the European countries?

3. Is it opiophobia or morphinephobia?

4. What is the role of a more aggressive marketing by the Pharmaceutical Companies?

……for you to find the answers

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


IAHPC Traveling Fellowship Report

Visit to Kijabe Medical Center , Kenya
May - July 2005
By: Beris Bird, RN

This visit was my third to Kijabe Medical Centre. It is situated about an hour’s drive north from Nairobi , and is an acute general, district hospital which provides excellent care, both diagnostic and curative, to patients who travel from all parts of Kenya seeking help. It is well known and respected throughout Kenya . Kijabe Hospital is part of the network of hospitals and clinics owned, and operated, by the African Inland Church . It is expected to be self funding and is reliant on income received from patient care, consequently, there is a constant battle to keep the accounts in balance, and annually, there is a considerable deficit.

Following the first visit in 2001, the Senior Administration made the decision to appoint a palliative care nurse in the next financial year and this happened in early 2002. At the same time, a palliative care committee was formed under the leadership of one of the senior medical staff, but this only continued to function for a year.

I was asked to return to help with the development of the service, and I suggested that it might be time to do this in the form of a clinical audit. This was agreed.

With the prevalence of HIV/AIDS there is certainly a need for palliative care to be provided in this hospital. Other terminal illnesses add to the high number of deaths which occur annually. Most of the senior medical staff are from the USA and one said to me, “I have never seen so many deaths - I just do not know what to do.”

As stated in Primary Surgery 1993; Vol 1, OUP, King M et al. (Eds), p. 586, It is a task for every district hospital. And “ No patient should be sent home – they have come seeking help, and should be admitted until such care is provided.”

It was obvious from the start of my visit, that there were many problems

“There is no palliative care in this hospital” was a statement made to me, by doctors, nurses, chaplains, - what had been started, had not continued as planned.

The fact that the need was great was obvious from the condition of the patients and from the concern of many staff. A letter written to the Accord staff by one of their terminally ill patients reads, “I have gone through a lot of stress since I got sick. My parents deserted me and told me to move out of their compound. Nobody else wanted to stay with me because they all thought I would infect them. Now I cannot provide for all my children’s needs. Most times they go to sleep hungry, never go to school, and sleep down on the floor. We are really suffering. Since I am not working and there is nobody to take care of my children, is there any possible way for the Kijabe mission to take them and help them? I also want to know if there is any way I can learn to help other people who are sick? I want to work for them because I know they are as desperate as I am. I have always wanted to work with sick people though it is unfortunate for me to be sick too.”

One young girl , in the terminal phase of HIV/AIDS, not only had active T.B, but had Karposi’s sarcoma and lymphoma - she was in constant pain, was being put out of her rented home because of her condition, and simply, had no where to go.

Cancer is fast becoming the forgotten disease in Kenya as the focus everywhere is on HIV. Two young men came to the hospital seeking help, Peter, 23 , orphaned some years ago and was being cared for by elderly grandparents. He presented with gross ascites which required paracentesis every 3-4 days to relieve symptoms and to help him to breathe. His grandparents could not pay his expenses and so simply did not visit. A diagnosis was made at laparotomy of non-Hodgkin’s lymphoma. In the West this is curable, but for Peter, chemotherapy was not an option – his condition was too advanced, his family too poor to pay.

Problems for palliative care – how to discharge home, how to arrange for paracentesis in a rural setting, how to help the grandparents meet the costs of his treatment and to understand that their grandson was to die? These needs were met, but only because a fund had been set up to help in such circumstances.

Stephen, 21, had had a palliative amputation of a sarcoma of his femur two years previously. He had a supportive family, but they lived many miles from the hospital and could not afford to visit or to pay for his care. Stephen presented with multiple secondary tumours in his lungs and with acute dyspnoea needing continuous oxygen. He had severe pain and was wanting to go home. But, how?? His symptoms were eventually controlled, but his condition continued to deteriorate and he died in hospital. His death left his parents with bills they just could not pay and with a grief they could not share because they felt they had abandoned him.

Much is being done for these patients. The Accord project was set up with the aim of giving registered HIV patients antiretroviral agents (ARVs). It has made a big difference to the condition of many patients, giving them improved health and the ability to work and to care for their families. This means that children will wait longer to be orphans! But still, there comes a time, a time to die. And then what??

In Kenya, the Nairobi Hospice is very active in encouraging the care of terminally ill patients through their palliative care educational program. There are 9 agencies in Kenya, now registered with the association – Kijabe being the only one to offer inpatient care. Not all people can be cared for at home, too often this assumption leads to ‘home based neglect’.

At the end of my two months visit, many of the problems had been addressed and the hospital administration was ready to support more appropriately the development of palliative care in the hospital and to support the staff.

The hospital mortuary gives an excellent service to the families of patients who die, both in the hospital, and in the community. In Kenya , there are no funeral directors, and the burials usually take place on family properties. The hospital mortuary gives ‘refuge’, sometimes for weeks, as arrangements, practical and financial take time.

Internationally, the Declaration of the Seoul Conference, March 2005, stated,

“1. That all governments should include hospice and palliative care as part of the government health policy

2. Access to this care should be seen as a human right.

3. Barriers of laws and of regulations and of cost, regarding the use of opioids, and specifically, morphine, should be eliminated.

4. This care should be available to all citizens in the place of their choice, be in home, hospice of acute hospital..”

A very big problem in developing countries is the “How’!! The provision of palliative care is a challenge for this hospital, but it requires above all else, money!!

For people in Kenya , dying is compounded by total suffering, the misery of poverty, the misery of not being able to get help, but most of all, the misery of not being able to afford analgesia – this is the pain of poverty, the pain of dying, which we seek to alleviate.

Very few agencies are prepared to support the work of a district hospital, and so when there is no government assistance, and no health insurance system, it becomes impossible for the very poor to receive the care they need in a terminal illness.

The Accord project has demonstrated the powerful influence of money!

Hospitals can be willing, staff educated and available, in patient care offered, drugs subsidized, but without adequate funding the Palliative care services will be limited.

The commitment of the International Association of Palliative and Hospice care through the Traveling Fellowship grants is one way of supporting the development of services in countries where funds and resources are limited. Education is only part of the problem, money remains the one component which it seems impossible to change .The poverty of the patients, and poverty of health care facilities simply prejudice against patients in these countries being able to die with some care, some compassion and with some alleviation of their suffering.

It was very helpful for me, personally and professionally, to be supported by the IAHPC. I would like to express my thanks to all concerned.

View photos of Kijabe Medical Centre in Kenya
(New window will open)

Beris M Bird, RN
Mt Martha , Australia


Traveling Scholar's Reports

A Research “Summer School” on End of Life Care, International Observatory in End of Life Care, Lancaster University, UK

Jorge Eisenchlas, MD
Professor of Palliative Care and Research Methodology
Universidad del Salvador
Buenos Aires , Argentina

No doubt, the “Summer School” as it was renamed by the attendants has constituted a magnificent resource to learn diverse issues about social research in Palliative Care. During the first week, a deep view about the diverse social research methodologies to be used when investigating end of life issues was approached. The lectures were exceptional and were under the leadership of Prof. David Clark. A second hard-working week followed and allowed me to prepare a research proposal under close supervision from experienced and skilled researchers. This “putting the hands-on” made me reflect about the wider world of qualitative research and how necessary it is to delve under the surface of common issues. The opportunity to share diverse points of view with colleagues from other parts of the world was most enriching. Having been immersed in the qualitative world during these weeks, made me realize the need to pay much more attention to issues often neglected by the quantitative view and gave me a basis upon which to develop more creative research models.

Being part of the palliative care movement from a country with a long palliative care tradition, but with scarce palliative care research initiatives, the attendance at the Summer School provided me with the tools to try to advance the development of research in my country. There is a need to acquire a local base of knowledge, something most important in places like Argentina , where Palliative Care has not yet been fully recognized by the academic environment, the public, or other stakeholders. Skills and knowledge gained in Lancaster , UK , made me feel a duty to spread the “word” across our country. Currently, we are working towards a National Palliative Care Research Network, a project born one year ago and not yet very active. I trust, I will also be able to spread the “research commitment” in a newsletter column given to me to write in the Latin American Association of Palliative Care. Also in the local context, some specific research initiatives are now growing and we expect to be able to fully develop those in the very near future.

I wish to express my infinite gratitude to the IAHPC for giving me a Traveling Scholarship. Without it, and the additional help from the Observatory on End of Life Care, it would had been impossible to participate in this brilliant initiative that the Summer School is - I talk in present tense, as those two weeks still remain with me.

Jorge Eisenchlas, MD
Buenos Aires, Argentina

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Conference: International Conference on Grief and Bereavement in London, UK

Dr. Reena Mary George
Palliative Care Care Unit
Christian Medical College,
Vellore, India

Participating in this Conference was a memorable opportunity to learn from the leading workers in the field of bereavement research and to become aware of new developments in this field.

I was deeply moved to hear about simple community level bereavement interventions that have been applied in conflict affected areas in Africa and Asia that can be modified for use in our context. The setting up of the Asia Africa bereavement group will help us keep in professional contact and we were able to network with palliative care workers from around the world.

We established a twinning relationship with St Ann ’s Hospice Weston and I had a very and useful visit to St Christopher’s Hospice, London . I have gained a better understanding of grief and bereavement, which can be applied both in our clinical work as an interdisciplinary team and in teaching of medical students and postgraduates. I am struck by the need to link bereavement support with social economic rehabilitation for the bereaved family in resource poor countries and would like to explore how this can better be acheived in our clinical services. We would like to develop training programmes for social workers and counselors that address both these domains.

Our links with the Asia Africa group will help us share knowledge and experience in bereavement support in a non-Western context and to reflect on culturally sensitive research projects.

The IAHPC Office was very helpful and efficient in processing my application. Thank you very much for your help and support.

Dr. Reena Mary George
Vellore, India


IAHPC Book Reviews

Roger Woodruff
Melbourne, Australia

SUPPORTIVE CARE FOR THE UROLOGY PATIENT

Richard Normal & David Currow (eds)
Oxford University Press, 2005
476pp
ISBN  0-19-852941-4
RRP £49.95 $US89.50
More Info & Purchase

Supportive Care for the Urology Patient is one of OUP’s series on Supportive Care, which is the multidisciplinary holistic care of patients and their families from the time of diagnosis, through treatments aimed at cure or prolonging life, and into the phase currently acknowledged as palliative care.

The introductory chapters emphasize the dimensions of holistic care. These are followed by a series of chapters dealing with particular clinical problems: haematuria, urinary retention, urinary incontinence, neurological disease affecting the urinary tract, sexual dysfunction, urinary diversions, genito-urinary infections, benign and malignant genito-urinary pain, male infertility, recurring urinary calculi, ureteric obstruction, and others.

The book is comprehensive in scope and is well referenced.  The material is well set out and easy to access.  I would have liked to have seen more tables, including those summarizing the results of clinical trials.  However, this aside, this book definitely has a place on the library shelf in both the Urology ward and the Palliative Care ward.

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MANAGEMENT OF ADVANCED  DISEASE

Nigel Sykes, Polly Edmonds & John Wiles (eds)
Arnold, 2004
640pp
ISBN 0-340-76313-2
RRP: £29.99 $US49.95 $AU135
More Info & Purchase

This is the fourth edition of the landmark text first published in 1978, edited by Dame Cicely Saunders.  Comparing it to the slim 250-page second edition that I purchased in 1984 is a testament to the legacy that Dame Cicely has left us.

The book opens with a brief introduction by Dame Cicely herself, followed by chapters on communication and audit.  The bulk of the book is an A-Z of symptoms, followed by sections on particular clinical challenges in malignant and non-malignant disease, respectively.  This classification can be a little difficult to navigate: for example, if you want to know about seizures, they are described as fits and are included in the malignant disease section.  However, once you have found the topic you want, the material is well set out with generous use of bullet-point lists.

The section on psychosocial issues is particularly good and reflects the wealth of accumulated experience at St Christopher’s.  The final section of the book relates to organizational issues for palliative care professionals.

This is a comprehensive book that includes a vast amount of information, including non-malignant disease as well as cancer.  It deserves a place on the library shelf in any palliative care unit. 

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SUPPORTIVE CARE IN RESPIRATORY DISEASE

Sam Ahmedzai & Martin Muers (eds)
Oxford University Press, 2005
540pp
ISBN 0-19-263141-1
RRP £69.95 $US135
More Info & Purchase

This book belongs to OUP’s series on Supportive Care, which is defined as the multidisciplinary holistic care of patients and their families from the time of diagnosis, through treatments aimed at cure or prolonging life, and into the phase currently acknowledged as palliative care.

The first section provides a description of supportive care, discusses respiratory anatomy and physiology, quality of life, and health economics.  The second section (16 chapters) describes the mechanism and management of dyspnoea.  The third section (6 chapters) is about cough and haemoptysis.  The next deals with the mechanisms and management of pain associated with respiratory disease.  The last section deals with the respiratory supportive care of patients in three specific diseases: cancer, HIV and pulmonary tuberculosis.

The book is well set out, with good use of tables and illustrations. It appears comprehensive in detail and is well referenced. 

I certainly believe this book deserves a place on the bookshelf in both the Respiratory and the Palliative Care wards.

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DEVELOPING HOSPICE RESIDENCES
A Guide and Tool Kit


Ruven Liebhaber & Andrew Barder
Pentaview Collaboration, 2002
295pp
Price:  $US 295 plus shipping
Available from www.pentaview.com

This manual is a guide to the planning and development of a hospice residence sited away from a hospital or other significant health care facility.  After a brief overview of hospice care, it covers service planning and feasibility, business planning, physical design and planning, team building, delivering care, and marketing.

It is comprehensive in scope and the experience of the authors is apparent in the detail. 

The small fraction of the book that deals with regulatory matters refers to the regulations in USA .  However, given some minor adjustments for local culture and tradition, the rest of the material should be applicable anywhere.

The manual is not cheap, but for anybody seriously contemplating creating an Hospice Residence, it would be a small and worthwhile investment.

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HOSPICE INPATIENT UNITS IN HEALTHCARE FACILITIES
A Guide and Tool Kit


Ruven Liebhaber & J Koeper
Pentaview Collaboration, 2005
349pp
Price:  $US 315 plus shipping
Available form www.pentaview.com

This manual is a guide to the planning and development of an inpatient hospice unit associated with a hospital or other significant health care facility.  After a brief overview of hospice care, it covers service planning and feasibility, business planning, physical design and planning, team building, delivering care, and marketing.

It is comprehensive in scope and the experience of the authors is apparent in the detail.  The small fraction of the book that deals with regulatory matters refers to the regulations in USA .  However, given some minor adjustments for local culture and tradition, the rest of the material should be applicable anywhere.

The manual is not cheap, but for anybody seriously contemplating creating an inpatient unit, it would be a small and worthwhile investment.

Roger Woodruff
Director of Palliative Care, Austin Health,
Melbourne, Australia


Regional News - Uganda

“Completing the Circle of Care” 
Palliative care conference
Jinja, Uganda, August 2005.

by Anne Merriman and J Jagwe.  

Note: Because of space limitations, this is a shortened version of the summary provided to us by Merriman and Jagwe.

  This was the second biennial conference for the Palliative Care Association of Uganda (PCAU) and a fitting occasion for the conference with the sewing of the seeds for Hospice Jinja. Over 260 delegates attended this three day conference - all from Uganda.

Dr Amandua, commissioner for Health Services, represented the Minister of Health (MOH). The speech reiterated the support for Palliative care services in Uganda and its incorporation into the five year plan commencing this year.

The Keynote address, by Faith Mwangi Powell, Executive Director of African Palliative Care Association (APCA), on “Palliative Care in a Changing Environment” set the scene for the conference, relating how care had been set aside in favour of cure at the advent of antibiotics, and how that care could be pushed aside in the era of antiretroviral agents (ARVs) and reminding us that Palliative Care and ARVs must move side by side and hand in hand.

Hospice Jinja is a new venture that is still in utero. It has trained personnel to give appropriate care and the finances to support them are not yet in place. However the premises have been supplied by the DDHS next to the DDHS’s office and we are extremely grateful for this – a ribbon cutting was held.

At the opening of the conference the concept of palliative care was clearly defined. Definitions are now becoming more important as organisations seek a share in the cake being given by palliative care by donors.

Our own Uganda experience, although recognised as a leader in Africa , is far from universal in our country. Many patients still live and die in pain. Our efforts need to be streamlined to reach the poorest, those who still cannot reach a health worker for whatever reason must be reached with this form of care.

It was recognised that the extent of the demand for palliative care in Uganda is on the increase. Those who are trained to carry out palliative care may be constrained by lack of time and resources to give their patients and families the service they have been trained to give. Also many who are trained are still left to fulfill their fulltime posts in the health service and PC is seen as something that can be done in addition. The need for time for each patient, training of others in the Districts and advocacy, is asked of our trainees and was brought to the fore.

The increased recognition of the need for pain and symptom control to complete the circle of care, from the HIV/AIDS sector and the AIDS commission in particular, gives great hope for the increased grafting of palliative care, onto support groups for HIV/AIDS.

The effective delivery of a palliative care programme cannot be achieved without support from the Government and other interested partners. However, a review of the Government health care system in Uganda which started with a statement of the size of the budget (set at $13.4 per person per year), the cost per week for the care of a patient being cared for by the HAU (Hospice Africa Uganda) team, together with the telling statistic that over 50% of the population never see a health professional, gave a stark indication of the severe financial limitations which are imposed on any new initiative. The most urgent priority of the Health Ministry is the burden of infections diseases including TB and Malaria, often linked to HIV. Nevertheless the importance of government support for palliative care was stressed. This has been taken up by the Government of Uganda particularly be increasing prescribers and by allowing the nurses and clinical officers trained in palliative care to prescribe morphine as well as carry the torch for PC in their Districts. The importance of training through the centres of excellence in Uganda such as HAU and Mildmay was again stressed, and the responsibility of these institutions to increase capacity for training and adapt training to country needs was again stressed. The use of specially trained and qualified palliative care nurses can be seen as an important step in broadening provision of pain and symptom control.

HAU and other lobbyists can take considerable satisfaction with knowing that palliative care is now formally recognised by government and is part of the current and next 5 year health plan.

The role of oral morphine as a key factor in pain relief was emphasised many times. It was stressed that oral morphine is not addictive, despite the opinion of some senior figures in the medical profession and elsewhere and the importance of establishing sound clinical practice based on evidence was reiterated. The advantages of oral morphine - low cost and easy availability, ease of formulation and dispensing, simplicity of use (including the ability to supply sufficient for a reasonable period time thus allowing home care) - were all described and the process of sensitisation of the key decision makers to its benefits was also discussed. In Uganda 21 of the 56 districts have now received sensitisation, and are subject to the vagaries of supply - oral morphine is available in each of them.

The role of ARVs in changing the life expectancy for individuals and in the country was discussed. However there are many other problems arising which may need palliative care during the course of ARV therapy. The problem arose that the supply of affordable ARVs might stop after the BIG donors withdraw their funding. Dr Amandua assured us that the Government was making provision for this. Meanwhile PC providers need to be aware of the different presentations to PC and the interactions of drugs that can occur when a patient is on ARVs.

As the need for palliative care is more recognised, the need for education and training of the providers in PC is recognised. Yet the places for training are few. The training incorporates clinical skills, special forms of caring, training of others and advocacy. A plea to the MOH was made that at least one person in each District would be dedicated full time to PC while training continues and that later generic carers can incorporate PC into their programmes reaching all.

Looking forward

As the conference drew to a close, its success could easily be recognised. Delegates from Districts all over Uganda came to show that PC is alive and well and moving slowly, but surely, through to Districts, through to community volunteers, and through to the poorest in the villages.

The conference atmosphere was one of mutual support and the importance of sharing experiences was emphasized many times. The opportunity to exchange ideas and particularly to publicise what was happening through the Palliative Care Association of Uganda and the newly formed African Palliative Care Association were constantly reiterated.

It rapidly became apparent that not only was there no competition between the various groups, but also there was a genuine wish to cooperate. Uganda is a wonderful country for beauty (Jinja) and love and caring!!

by Anne Merriman and J Jagwe.  


What's New?

Cancer Pain Release

The importance of methadone as an analgesic for cancer pain management is the focus of the current issue of Cancer Pain Release, the publication of the WHO Pain and Palliative Care Communications Program.

Professor Eduardo Bruera, an expert in clinical oncology and palliative medicine at MD Anderson Cancer Center reviews the clinical merits of methadone and the challenges of switching from other opioids to methadone. The issue highlights recent research about the safety, efficacy and patterns of use of methadone and features online resources about prescribing methadone for cancer pain.

To read this issue online, visit here
Communications Assistant WHO Collaborating Center for Policy and Communication in Cancer Care
University of Wisconsin Comprehensive Cancer Center
406 Science Drive, Suite 202
Madison, WI 53711 , USA 

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The Pain & Policy Studies Group

The Pain & Policy Studies Group is pleased to announce publication of “Improving Cancer Pain Relief in the World: Report for 2004.” The report describes the work accomplished by the World Health Organization Collaborating Center for Policy and Communications in Cancer Care (the Center), which is sponsored by the Pain & Policy Studies Group at the University of Wisconsin Comprehensive Cancer Center.

Highlights of the report include:

   * Policy research and development projects in India with state governments and palliative care professionals to improve access to opioid analgesics for treating cancer pain.

   * Reform of narcotic control policies in Romania, which included visits to the country to study the Romanian health and regulatory system for making opioid analgesics available for pain relief, and a study visit to the Center by a team from the Romanian Ministry of Health to draft new national opioid regulations. A monograph is available here

   * Assistance to the Middle East Cancer Consortium (MECC) sponsored by the United States National Cancer Institute. A presentation about improving access to opioid analgesics for pain relief in the Middle East was given at a workshop in Cyprus for the countries of Cyprus, Egypt, Israel, Jordan, and Turkey. A monograph of opioid consumption trends for the Middle East, highlighting the participating countries, can be accessed here

   * A Spanish-language monograph was prepared for the 2nd Latin American Congress of Palliative Care in Montevideo, Uruguay and is a pdf version of the full report can be seen here.
Comments, suggestions and questions are welcome.

Ms. Jody P. Garthwaite
Policy Specialist & Communications Coordinator
Pain & Policy Studies Group
University of Wisconsin Comprehensive Cancer Center
World Health Organization Collaborating Center
406 Science Drive, Suite 202
Madison, WI 53711-1068

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Quality of dying in the ICU

Ratings by family members.
Click here to see results

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Request for collaboration / help from a new Psycho Oncology initiative in India

In the developing world, Psycho Oncology initiatives are extremely rare. There are only a few individuals involved in Psycho oncology work in India. Even these isolated ventures are still in their infancy.

A group of Oncologists, Palliative Care physicians, Psychiatrists and Psychologists in Kerala ( India ) met recently to discuss psycho social issues in cancer patients. It was felt that there is an urgent need to develop a resource center in Psycho Oncology to learn, research and document issues relevant to Indian situation. There is also a need to develop programs to train professionals and community volunteers in handling psycho social issues in cancer patients in a culturally appropriate way.

A professional group by name Kerala Initiative in Psycho Oncology (KIPO) was formed to work towards this aim. Alpha Pain Clinic in Trichur (a charitable institution engaged in Palliative Care and Long Term Care activities in the region) has offered to provide the necessary infra structure for KIPO to work.

If you are interested in collaborating with this initiative, please contact KIPO. We will also benefit from any piece of literature / old issues of journals / books covering this topic.

Kerala Initiative in Psycho Oncology
Alpha Pain Clinic
Edamuttam, Thrissur
Kerala, India
Email: [email protected]

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Cicely Saunders - the founder of the modern hospice movement.
Revised edition.

Author: Du Boulay, Shirley
Publisher: Hodder & Stoughton Year: 1994
ISBN: 0340608072
Price: £4.99 plus postage

This is the definitive biography of Cicely Saunders, founder of St Christopher's Hospice ( London, England ) and of the modern hospice movement. It was first published in 1984 and provides a comprehensive account of her life until then. It also provides a history of the hospice movement. In 1994, a new edition was published with an added chapter on euthanasia by Cicely Saunders herself.

The book is available from the St Christopher's Hospice Bookshop.
To order, please email [email protected]
Overseas purchasers can pay by Mastercard or Visa.
In this case, please provide card details with order.

A comprehensive list of items available from the Bookshop, with annotations, can be seen here

Kind regards
Kate Davies BSc(Hons) MA MCLIP
Assistant Librarian St Christopher's Hospice
Halley Stewart Library and Bookshop
51-59 Lawrie Park Road
London SE26 6DZ
PH: 020 8768 4671
[email protected]
http://www.stchristophers.org.uk/

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UK Lottery supports hospice and palliative care

The Big Lottery Fund, UK, is supporting UK charities that are funding many health related programs in developing countries.
Read more here

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WHO Publications in French

Dear Colleagues,

We would like to inform you that the following publications in French are now available to you FREE OF CHARGE:

1. Traitement de la douleur cancéreuse

2.  Traitement de la douleur cancéreuse et soins palliatifs chez l'enfant

As we would like to redistribute these publications in the near future, please let us know how many copies of each you will need for your purposes and what address to send them to.

Thanking you in advance for your fast reply
Those interested in receiving a copy of the publications, please contact:
Ms.Verena K. Loch Technical Officer,
Room 4025 Programme on Cancer Control (PCC)
World Health Organization               
Tel: +41 22 791 2650
Fax: +41 22 791 4297
Email: [email protected]

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Multilingual Core Curriculum in Psychosocial Oncology

“Dear Colleague,
We invite you to visit the International Multilingual Core Curriculum in Psychosocial Oncology and enter a library of wisdom dedicated to the education of all professionals working with cancer patients including medical doctors, nurses, social workers and psychologists…

This work has been accomplished based on a generous grant from the European School of Oncology and by hard-working experts who volunteered to produce this Curriculum. We thank each of you.

Yours Sincerely,
Dr. Christoffer Johansen MD, PhD, DMSc Dr. Alberto Costa
President of IPOS Director of ESO”

For access to the International Multilingual Core Curriculum visit click here


Meetings and Conferences

"Mechanisms and Treatment of Cancer-Related Symptoms"

Sponsored by the Department of Symptom Research, at MD Anderson Cancer Center

September 10-12, 2005
Intercontinental Hotel, Houston , USA

For registration and information, contact

Department of CME/Conference Services ­ Unit 1381
The University of Texas M. D. Anderson Cancer Center
PO Box 301439
Houston, TX 77230-1439
USA
E-mail to [email protected]
On-line at www.mdanderson.org/conferences and select "Mechanisms and Treatment of Cancer-Related Symptoms."

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Current Concepts in Cancer Pain Management: A Multidisciplinary Case-Based Symposium

Sponsored by the Center for Cancer Pain Research at the Johns Hopkins University School of Medicine

November 3-4, 2005
Baltimore, USA

Registration and information:

Johns Hopkins University
Office of CME
PO Box 64128
Baltimore, ME 21264-4128
USA
Fax (410) 955-0807
Online: www.hopkinscme.net

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Second African Congress on Pain

Sponsored by the African Federation for the Study of Pain

November 16-19, 2006
Tripoli, Lybia

For registration and information:

Dr. Husni R. Ajaj
P.O. Box 72825
Alhadba Alkhadra
Tripoli - Libya
Tel: +218 91 313 8074
E-Mail: [email protected]
Online: http://www.pain-free-africa.com/

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Australia and New Zealand Society of Palliative Medicine (ANZSPM) Conference

4 - 6th October 2006
Newcastle, New Zealand

For information and registration:

Contact the conference Secretariat
PO Box 180 Morisset NSW 2264
Phone: +61 2 4973 6573
Email: [email protected]
Online: www.willorganise.com.au/anzspm

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A Common Thread: The Evolving Role of Social Work in Palliative and End of Life Care

Sponsored by the Texas Partnership for the End of Life Care and the American Cancer Society

Sept 12-14, 2005
Austin, TX , USA - Marriott at the Capital

For information and registration
Visit Online: www.txpec.org


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 IAHPC Section:
Hospice and Palliative Care Journals Publications

Browse our listing of over 75+ journal & publications of assorted hospice & palliative care topics.
http://www.hospicecare.com/journals_publications.htm

Did You Know!

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To date we have over 650+ pages & 2129 images and adding more daily.
We value your ideas. Do you have any sugestions for our site?
Contact the webmaster!

Do you have a website? Help us by adding our link to your website
Visit our how to link to us section on our donate page.
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http://www.hospicecare.com/future.htm

Looking for an article or section on our website?
View our updated Site map!
http://www.hospicecare.com/sitemap.htm

Visit our Book & Video Shop for your hospice & Palliative care needs.
4 new titles with reviews.
See Reviews in this newsletter.
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Drop by often & don't miss out Until next month!
Anne Laidlaw
IAHPC Webmaster

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

Anne Laidlaw
IAHPC Webmaster


Editor’s Notes

William Farr, PhD, MD
(USA)

Clearing House Program - Thank You Notes

Details about our Clearing House Program

Message:

It was so thoughtful of you and IAHPC to send The Oxford Textbook of Palliative Medicine. The Institution, our Staff, and above all, our patients, will benefit greatly from this benevolent gesture.

Dr. Cherian Koshy
Regional Cancer Centre
Trivandrum, India

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

Message:

Many thanks for your kind donation of the Second Edition of the Oxford Textbook of Palliative Medicine.

Our institute will greatly benefit from it. I have introduced palliative medicine to the second year through to the sixth year medical students. These students come to the Chatsworth Hospice 2-3 days a year to listen to lectures and interact with patients and go on home-based care.

Yours sincerely
Dr. Krish Nair
Chatsworth Hospice
Durban, South Africa

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

Message:

I want to express our gratitude for donating us the Oxford Textbook of Palliative Medicine. Our institution, Angel Roffo Cancer Institute, is opening this month a new library.  This book represent a recognized source of knowledge in Palliative Care and now is available for every member of our institution. Thanks again for this great contribution.

Mónica Castro MD
Translational Research Unit
Angel Roffo Cancer Institute
University of Buenos Aires
Argentina

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Message:

We would like to thank you very much for the second edition of Palliative Medicine Textbook sent to our hospice. We were very glad to receive it yesterday. I am sure that our team will benefit a lot using it as a tool to improve our knowledge in palliative care field. Thanks a lot.

Kind regards,
Marinela Murg
Executive director
Emanuel Hospice
Oradea, Romania

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Message:

I have received the second edition of the Oxford Palliative Medicine book. Thank you very much because it will be of much utility to us.

Dr. Diego Martinez
Ecuador

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Message:

Dear IAHPC,

I just received the box containing “Oxford Textbook of Palliative Medicine” second edition this afternoon.

Thank you. It is a BIG donation to our palliative care library.

Robert

Dr. Robert Chen, B.Med.Sc., MD, CCFP, DTM&H
Family Physician & Palliative Care
Senior Fellow & Lecturer
Dept. of Family Medicine & Dept. of Medical Education
Faculty of Medicine
Universiti Kebangsaan Malaysia

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

Message:

Thank you very much for considering us for the clearing House Programme. I have given out the books and believe me they are very helpful. In fact, some of the nurses who were pursuing Diploma in Paliative care really appreciated them. My desire is that we will have an adequate library for our training programmes at Kisumu Hospice.

Philip Odiyo Ouma
Kisimu Hospice, Kenya

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Message:

I received the donated Oxford text book through the IAHPC Clearing House Program and we are very appreciate for this. We opened hospice ward at university hospital in Seoul 2yrs ago. The book will be very useful for our team (1doctor,5nurses,1sister).

Thank you so much !!!
Dr. MinJung Kim

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Message:

On behalf of Unidad de Medicina del Dolor y Paliativa - Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, we would like to thank the International Association for Hospice and Palliative Care for their kind donation (books and journals), that will form part of our library.

Dr. Argelina Lara
Palliative Care Program
Instituto Nacional de la Nutricion
Mexico City, Mexico

William Farr, PhD, MD
Newsletter Editor

Letters to the 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/

© 2005 IAHPC Press

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