International Association for Hospice and Palliative Care 

Subject: IAHPC Newsroom
2004; Volume 5, No 10, October

Dear Members and Colleagues:

The complete IAHPC Online Newsletter has been uploaded to our website at:
http://www.hospicecare.com/newsletter2004/oct04/index.html

Table of Contents:
1. Message from the Chair & Executive Director: Dr. Bruera & Liliana De Lima
2. Article of the Month: Dr. Ripamonti
3. Ethics Article of the Month: Dr Paulina Taboada
4. Book Reviews: Dr. Woodruff
5. Regional News: EAPC-East Newsletter
6. IPOS: Psychological, Social and Spiritual Aspects of Cancer
7. Twinning: Hospice Connection in the Himalayas
8. Webmaster's Corner: Anne Laidlaw
9. Editor's Notes: Dr. Farr
10. IAHPC Press: Palliative Care in the Developing World: Principles and Practice


Sincerely,

Eduardo Bruera, MD
William Farr, PhD, MD

1. Message from the Chair and Executive Director

Dear readers:

Greetings and welcome to the October issue of our Newsletter. As in our previous issues, we have several important announcements:

1. Meeting in Montreal: As we announced in our last issue, we participated in the 15th International Congress on Care of the Terminally Ill, which we were also proud to support. Congratulations to the Congress Chairman, Dr Balfour Mount, and the rest of the organizing committee for putting together such a wonderful and interesting meeting. Several activities took place and we were very busy during the Congress. Some of the highlights were:

a) General Members’ Meeting: Eduardo welcomed Dr. Kathy Foley as our incoming Chair (starting January 2005). We are all looking forward to continue working under her leadership and global vision. Eduardo and Liliana presented a summary of the last four years, our achievements, programs and the challenges that lie ahead. We wish to thank the IAHPC members who participated in the General Assembly and for their useful feedback.

b) IAHPC Stand: Many stopped by our stand to say hello to Ana and Liliana. Several BOD members and Eduardo spent time in our booth, meeting with people, answering questions and providing advice to participants. We were glad to see many of you again and to finally meet in person some of our members. Several people joined as members of IAHPC and we welcome them to this wonderful organization.

c) Traveling Scholars: We are proud to have been able to sponsor Doctors Daniela Mosoiu from Romania and Ednin Hamzah from Malaysia. Both gave very insightful and interesting presentations on the status of palliative care in their countries during the IAHPC workshop. Participants learned about the problems that both face and the solutions they are implementing in their countries. We thank both of them for their wonderful contributions.

CLICK HERE to view some nice pictures we took in Montreal.

2. Palliative Care in Europe: The IAHPC is collaborating with the European Association for Palliative Care (EAPC) in a Task Force on the Development of Palliative Care in Europe. This task force is under the coordination of Dr. Carlos Centeno Cortes in Spain. We need to locate palliative care workers in Andorra, Kazakhstan, Kyrgyzstan, Macedonia, Monaco, San Marino, Serbia and Montenegro, Tajikistan, Turkmenistan and Uzbekistan. If you know someone in any of these countries who might be interested in participating as country collaborators in this initiative, please send us their name and contact information to [email protected]

3. Clearing House Program: We are happy to announce that this month we sent more than 1,000 lbs of donated books and journals to 98 countries around the world as part of our Clearing House Program. Many of you will soon receive a box with palliative, general medicine and nursing material. We hope it will be useful to all and may help you in the provision of palliative care in your settings. Thanks to the IAHPC Board members who donated books and journals to this program (Doctors Alan Nixon, Neil MacDonald and Roger Woodruff), to the Open Society Institute (Mary Callaway), to Purdue Pharma, especially Pamela Bennett and her colleagues for the donation of Pain, Nursing and Palliative Care journals and to Suzanne St-Amour for the donation of several issues of the Journal of Palliative Care.

4. IAHPC Newsletter: As most of you know, the IAHPC Newsletter has undergone some renovations. We are lucky to have Doctors Anna Rommer, PhD and Karen Heller, PhD as advisors in this process. Both have vast experience as editors, including the online Innovations in End of Life Care and we are grateful for their useful advice and great feedback. One of their recommendations was to do a survey to find out what our readers like and find useful so that we may improve the Newsletter. Two weeks ago we sent an e-mail with an invitation to participate in the survey and we have had a wonderful response (more than 200!) from many of you. Many thanks to all you who completed the survey and for your participation and useful comments. If you are a new subscriber, or have NOT taken the survey yet, we ask you to please take a brief moment and complete it. It is anonymous and will take only 3 minutes to complete. The survey is available in http://www.hospicecare.com/news/ We will keep the survey "alive" for two more weeks, when we will analyze the responses and make changes to further improve the Newsletter. This Newsletter is sent to more than 3,500 readers around the world in more than 100 countries and we believe has become a useful tool for information dissemination and promotion of palliative and hospice care.

5. Agreement with Amazon.com store: Please remember that IAHPC has an agreement with the Amazon.com store in which Amazon donates to IAHPC a percentage of the sales amount when the purchase is made through our website. If you plan to buy anything from Amazon.com remember to log on through our Book and Video store. This will not cost you any additional money and you will be helping us help others. Visit our Book and Video Shop at http://www.hospicecare.com/Bookstore/ ; If you plan to buy one of the books listed in our site, click on the name of the book and it will take you directly to the Amazon.com's store. If you plan to buy any other items not listed there, just click on the Amazon icon to be directed to TODAY'S DEALS at Amazon.com

6. EAPC Meeting in Aachen: Please remember that the next meeting of the European Association of Palliative Care (EAPC) will take place in Aachen (Germany) on April 6-10, 2005. As many of you know, the EAPC meeting has become the largest and most important Palliative Care meeting in the World. We invite you to participate and make plans to be there. More information about the meeting is available through our website at www.hospicecare.com ; Click on Main Menu, then Future Events and Meetings, then select 2005. You will find the listing in chronological order.

7. Palliative Care in Brazil: Lo Tedhal, a palliative care non profit organization in Brazil wants to start building a hospice program there. If you are interested in providing help and support to this initiative, contact the Denis Bourgerie, the President of Lo Tedhal at [email protected]
We hope you will enjoy this month’s issue of the Newsletter!

Until next month,

Eduardo Bruera, MD, Chair person (USA)

Liliana De Lima, MHA. Executive Director (USA)

2. Article of the Month: Dr. Ripamonti

Intravenous morphine for rapid control of severe cancer pain

Author(s): Harris JT, Kumar KS, Rajagopal, MR

Abstract: Palliative Medicine 2003; 17: 248-256

This is a randomized controlled trial to compare the intravenous (IV) with the oral route for initial dose titration of morphine in 62 end-stage cancer patients. All were strong opioid naïve and had severe opioid responsive pain, having scored 5 or more on a 0-10 Numerical Rating Scale (NRS).

The setting of care is the Pain and Palliative Care Clinic in the city of Calicut, state of Kerala (India) where 2000 new patients are seen every year and about 80% of them present with severe pain. The routine clinical practice of the Authors of the paper is to administer bolus doses of IV morphine for immediate relief of severe pain followed by an appropriate dose of immediate release oral morphine every 4 hours. The Authors had previously published their experience with IV morphine for fast titration in 1478 cancer patients (Palliative Medicine 2000; 14: 183-88).

Thirty-one patients were randomly allocated to the Intravenous Group (IV) and were administered:

a) metoclopramide 10 mg IV as an antiemetic; b) 1.5 mg of morphine administered slowly as an IV bolus every 10 minutes. Pain relief and adverse effects (in particular drowsiness and respiratory depression) were assessed before each bolus. The end of the trial was considered when complete pain relief or drowsiness was achieved. The total dosage of IV morphine required was converted to an oral morphine dose to be administered every four hours (example 9 mg of IV morphine to achieve pain relief = 10 mg of oral morphine every 4 hours) plus the same dosage was used for rescue doses at a minimum interval of 1 hour.

Thirty-one opioid naïve patients were allocated to the Oral Group and titrated with 5 or 10 mg of oral morphine every 4 hours plus the same dosage for rescue doses at a minimum interval of 1 hour.

In both groups, the patients were monitored every hour for 12 hours, then every day for two days and then every week with regard to: 1. pain relief after each dose, 2. Number of rescue medications, 3. adverse effects.

After 1 hour of morphine administration, the number of patients in IV group with total or satisfactory pain relief was 26 and only 8 in the oral group (p< 0.001). However, after one day, the number of patients with satisfactory pain relief was similar in the two groups (p< 0.55).

Thirty, of the 31, patients in the IV group reached a satisfactory pain relief after 3 hours with dosages of morphine varying from 1.5 mg to 34.5 mg (median 4.5 mg) whereas in the oral group only 76% of the patients had satisfactory pain relief after 12 hours (p<0.001) with a mean dose of 7.2 mg of oral morphine every 4 hours (range 2.5-15 mg).

After stabilization and satisfactory pain relief using IV morphine, the mean dose of oral morphine required was 8.3 mg (range 2.5-30 mg) every 4 hours. The ratio of total IV requirement to control the pain to the stable oral morphine dose after 2-3 days varied between 1:0.5 and 1:3.3 (median 1:1).

Immediate side effects were drowsiness at the end of the IV trial in 11 patients and severe vomiting in 1 patient in the oral group. Delayed side effects were mainly constipation, drowsiness and vomiting. Patients were treated with metoclopramide tablets 10 mg t.i.d and laxatives.

Why I chose this article

Even if the titration with strong opioids is commonly performed using immediate release oral morphine every four hours, there are some clinical situations such as severe pain where pain relief has to be achieved as quickly as possible. This is the only prospective randomized study comparing titration with IV morphine compared to oral morphine. The results of fast IV titration compared to oral titration with morphine are very encouraging in terms of efficacy and tolerability of the IV route.

Other studies that confirmed the fast pain relief with IV morphine titration:

1. Radbruch L et al. Intravenous titration with morphine for severe cancer pain: report of 28 cases. Clinical Journal of Pain 1999; 15/3 September : 173-8
2. Mercadante S. et al. Rapid titration with intravenous morphine for severe cancer pain and immediate oral conversion. Cancer 2002; 95: 203-8

Regards,

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

3. Ethics Article of the Month: Dr Paulina Taboada

PAULINA TABOADA & RODRIGO LÓPEZ

CASE HISTORY

A 26 years old male patient with a HIV (+) test refuses to believe his diagnosis and does not accept to undertake any complementary studies (e.g. CD4+ T cell count, levels of HIV RNA in serum plasma, etc.) and treatment. Five years later, the patient had to be admitted to the Intensive Care Unit for the treatment of respiratory failure secondary to Pneumocystis Carini pneumonia. He had CD4+ T cell count <50, a severe nutritional compromise and skin lesions compatible with Kaposi’s sarcoma. The patient refused antiretroviral therapy. Nevertheless, his mother insistently requested the attending physician to begin the therapy even against the patient’s wishes. The physician refused to do so. One week later, because of his family’s persistence, the patient changed his mind and accepted treatment. The opportunistic pathologies evolved favorably, so that the patient could be discharged from the hospital one month later. He now accepts regular control of the antiretroviral therapy and is progressively improving his general and nutritional conditions.

ETHICAL ANALYSIS

1. Define the specific ethical dilemma/s.

Seemingly, the referred case does not raise major ethical problems: an adult patient assumes the risks derived from his refusal to medical treatment and abandons control. Nevertheless, a more accurate reflection reveals some profound ethical dilemmas related to this situation, such as – for instance – the questions whether it is legitimate for a patient to refuse any kind of treatment even when its benefits have been proven; whether the patient was fully competent when he rejected the treatment (specially if one takes into account that his emotional reaction pointed towards a negation of his health condition); whether it is appropriate to treat complications when a patient refuses to receive the treatment for the underlying condition; whether the family has a right to ask for treatment against the patient’s wishes; etc.

2. Refer to the ethical principles involved

Focusing our attention on the patient’s refusal to receive a useful treatment, the ethical principles involved are primarily beneficence and respect for patient’s autonomy.

3. Collect and analyze ethically relevant clinical information

The fact that antiretroviral therapy is highly effective in the treatment of HIV infection is doubtless ethically relevant in this case. If our patient would have had a different type of disease (e.g. metastatic cancer) the analysis of the case would have followed a quite different path. We would have probably concentrated on the analysis of the proportionality of the proposed therapy. But since there is no doubt that antiretroviral therapy is actually very effective in the treatment of HIV infection, the ethical questions refer to the reasons why this patient refused the treatment. Thus, the question about his competence rises.

It is evident that the duty to respect a patient’s autonomous decision presupposes that this decision has been made by a free and competent person. This means that health care professionals have to check the patient’s competence. This becomes even more important when a patient refuses an intervention that is known to have beneficial effects. To determine a patient’s competence is not always an easy task. Summarizing a delicate evaluation-process, we may say that the abilities that need to be tested for in order to establish a patient’s competence are at least:

- The intellectual capacity to understand the provided information.
- The rational ability to process the information and to infer consequences from it.
- The absence of affective blockages (e.g. depression, emotional shock, etc.).
- The possibility to communicate the decision in a clear manner.

In our present case, the patient’s denial of his clinical condition at the moment of his diagnosis suggests that he was emotionally compromised in a way that might have prevented him from making truly free decisions. Unspoken reasons might underlie this emotional reaction, such as for instance, the patient’s sexual behavior, drug abuse, social or family pressures, etc. Whether health care professionals should follow a patient's decision under these circumstances deserves further discussion.

4. Review alternative courses of action

Taking into account both the duty to benefit the patient and the duty to respect his autonomy, health care professionals may suggest two opposing courses of action: accept the patient’s denial or disregard the patient’s wishes arguing that his emotional state renders him unable to make free decisions. This last solution would be difficult to implement because the cooperation of the patient is absolutely needed for the kind of treatment required. Thus, a “third way” could be suggested, namely to offer the patient psychological assistance in order to find out which are the unspoken reasons is underlying his denial.

5. Suggest an ethical solution

The above described "third way" seems to respect both the ethical principle of beneficence and autonomy. By simply accepting the patient’s denial (as the attending team did in this case), health care professionals would neglect their duty to act in the best interest of the patient. On the other hand, it is certainly not correct to treat an adult, competent patient against his explicit will.

6. Consider the best way of implementing the suggested solution

To declare a patient as “incompetent” (i.e. unable to exercise his autonomy) on the grounds of a neurological condition (e.g. viral encephalitis) is usually not very difficult for health care professionals. But in the case of emotional factors compromising a patient’s autonomous decisions, they might consider it more difficult. It is indeed not always easy to help the patient realize what his state actually is. An experienced and attentive professional assistance is needed here, and this course of action would probably take time.

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

4. Book Reviews: Dr. Woodruff

FATIGUE IN CANCER

Jo Armes, Meinir K. Krishnasamy and Irene Higginson (Eds).
Oxford University Press, 2004. 311pp.
ISBN 0-19-263094-6.
RRP $US65, £39.95

In the foreword to this book, Simon Wessely observes why we as a profession  are wary of fatigue. It is non-specific, difficult to measure and difficult to treat, but it is also a major source of morbidity to our patients. When lay people and doctors were asked to rate symptoms in order of importance, the professionals placed fatigue at the bottom of the list, while the public ranked it at the top.

The book is divided into three sections. The first covers definitions, epidemiology, models, and clinical associations of fatigue. The second is about the experience of fatigue and includes chapters on fatigue in people caring for patients with cancer and in children with cancer and their families. The last section covers the assessment and management of fatigue and includes an in-depth discussion of all the physical, emotional, psychiatric and social associations of fatigue.

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

HANDBOOK OF CANCER-RELATED FATIGUE

Roberto Patarca-Montero.
Haworth Medical Press, 2004. 483 pp (text 248 pp).
ISBN 0-7890-2168-4.
RRP $US49.95, £32.00

This book opens with the statement that cancer-related fatigue is the most frequent, distressing, persistent, important, under diagnosed, and under treated symptom in cancer medicine. How true.

The book is divided into four large chapters. The first covers definitions and factors that influence the recognition and treatment of fatigue. The second covers the relationship between cancer-related fatigue and other cancer-related symptoms. The next is a discussion of the possible causative, predisposing and perpetuating factors in cancer-related fatigue. The last covers the treatment and includes discussion of exercise, energy management, sleep therapy, cognitive behavioral therapy, nutritional, pharmacological, complementary and immunological therapies.

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

Patarca-Montero or Armes?

This year sees the publication of two books devoted to cancer-related fatigue. Similar size and similar cost. The full Tables of Contents are available in the IAHPC’s Bookshop. Patarca-Montero has the advantage of being a single author text, but I think the multi-authored and multidisciplinary approach in Armes brings a greater depth and breadth to the discussion of what is a very complex clinical problem. In Patarca, key points are usefully highlighted in little boxes in the text. In Armes, there is a thought-provoking list of future areas for research at the end of each chapter. Patarca provides a little more detail about available therapies, particularly the complementary and alternative treatments. The Oxford book is better presented with the use of tables, dot-point lists and diagrams of concepts; whole pages of references in parentheses, four and a half consecutive pages in one case, within the text in the Haworth book are an annoyance and a strong recommendation for an alternative referencing system.

Both are worthy, scientifically-founded books that will do a lot to reinvigorate clinicians who have tired of fatigue and help get this complex symptom out of the too-hard basket.

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

PRIMARY AN1D METASTATIC BRAIN TUMOURS

Sara Booth and Eduardo Bruera (Eds).
Oxford University Press, 2004. 166 pp.
ISBN 0-19-852807-8.
RRP £29.95, $US 49.95

This is the latest addition to Oxford’s Palliative Care Consultations series. The first two chapters provide concise descriptions of the oncological management of primary and metastatic brain tumours; in contrast to some oncology texts, the discussion does not stop when the patient’s disease relapses. There is a useful chapter on the pitfalls of anticonvulsant therapy in patients with intracranial malignancy.

Three chapters in the middle of the book, which deal with the non-oncological management, are particularly good. The first deals with the neuropsychological complications of the disease and therapies, including behavioural changes. The next discusses all aspects of family care. The third describes the management of the communication and swallowing problems suffered by these patients.

I was troubled by the discussions of how and when corticosteroids should be withdrawn from patients who become unconscious and cannot swallow. In one chapter, the ethical issues are briefly discussed; in another it is stated that corticosteroids can be stopped without weaning the dose; and in a third, the acute withdrawal of steroids is described as ‘a therapeutic strategy’ with an expected outcome of rapid deterioration that is, of course, undertaken only with the full understanding of the family. Is this not another opportunity for advance care planning with the patient and family? Recent Papal edicts aside, I thought this clinical problem probably deserved its own small chapter.

This is a useful and an up to date synopsis of the interface between neuro-oncology and palliative care. It will be a useful addition to the library shelf of any palliative care service.

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

LIVING AND DYING WITH CANCER

Angela Armstrong-Coster.
Cambridge University Press, 2004. 194pp.
ISBN 0-521-54667-2.
RRP $US23.99, £15.99, $AUD49.95

This is a narrative-driven, longitudinal study of a small group of patients dying with cancer. It is divided into four main sections – Departure (Diagnosis), Exploration (Tests and Treatment), Anticipation (Remission and Recurrence), and Destination (the Deaths). There is a dearth of valid, truthful, experiential accounts of dying and the author’s extensive use of quotations allows us a glimpse of some of the most personal and sensitive issues while the respondents describe the effects of the disease and treatment on their own practical, emotional and social worlds. We see what it means, from the patients’ perspective, to live as fully as possible for what remained of their lives; physically restricted but psychologically invigorated.

The author correctly notes that the observations in this book are not generalizable, but there are important messages for those who work in medical oncology and palliative care. We don’t treat a case of breast cancer, we treat a person with breast cancer; and every person is a unique individual with differing practical, emotional and social needs, which we must recognize. Health care professionals need to understand how easily their actions and poor communication can compound a patient’s suffering. Hats off to the woman who had out-lived so many life expectancies given by her consultant that when she saw him next, she ordered ten more years!

The value of this book is in what the patients have to say. Anyone who works in palliative care will benefit from listening to them and it should be required reading for anyone training in medical or radiation oncology.

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

5. Regional News: EAPC-East Newsletter

EAPC-East Newsletter

Dear Friends,

Now is the time just before the launching of the Council of Europe recommendations on palliative care. The common date is set to be October 11 and up till now recommendations have been translated into 17 different languages: Croatian, Dutch, English, French, Georgian, German, Greek, Latvian, Lithuanian, Hungarian, Polish, Romanian, Russian, Serbian, Swedish, Turkish, Ukrainian. Some of the languages will be used in several countries. We expect and hope there will be lot of discussions about palliative care in all of Europe in October.

There will be a press release in active countries with a common part and a national part. It is mostly welcome and important with activities on regional and local levels as well in every country. Do you want to take part in the disseminating of the recommendations in your country or region? Please get in touch with the contact in the respective country (you find the list of persons and their e-mail addresses on the web site www.eapceast.org under down load) or if you prefer you can contact [email protected]

The Council of Europe recommendations in all languages will be printed in a booklet and it will look the same in the different countries. We all are in a very hectic process to get the booklets printed and available from the contact persons in the different countries in time for the press release and other activities.

We hope this occasion will be a good opportunity to inform widely about palliative care in different kinds of settings and surroundings in both East and Western part of Europe. Let's hope the recommendations will turn out to be a useful tool to help development in a positive direction.

The National Association of Social Workers (NASW) in the USA is offering a new continuing education course, "Understanding End of Life Care: The Social Worker's Role," through the association's NASW WebED online training. Web site, www.naswwebed.org The course, which launched in June, is free and provides 2.0 continuing education unit hours for social workers who complete the content and take the exam.

The course was developed as part of a Open Society Institut's Project on Death in America grant to advance social work practice in end of life care.

The course targets social workers working with individuals and their loved ones who are coping with issues surrounding death and dying. Social workers addressing these concerns work in a range of practice settings, including healthy and mental health agencies, hospitals, hospices, nursing homes, day care and senior centres, correctional systems, substance abuse programs and others. The course is designed to increase social workers' knowledge about the complexities of end of life care in the United States and to help them gain information, skills and resources that will enhance their practice in end of life practice.

Clinical practice guidelines for quality palliative care
The Clinical Practice Guidelines for Quality Palliative Care, developed by the National Consensus Project for Quality Palliative Care, are now available. You can down load the full text directly from the web.
Or order copies (Item # 820538 - $25) or the executive summary (Item #820539 - $15), go to the NCP Web site www.nationalconsensusproject.org or www.nhpco.org/Marketplace


Remember
Deadline for abstracts for the next EAPC conference in Aachen , April 6-10, 2005
Last day to send in an abstract is September 30, 2004.
For more information please see: www.eapceast.org/Aachen2005

Keep in touch!

Sylvia Sauter Carl Johan Fürst

6. IPOS: Psychological, Social and Spiritual Aspects of Cancer

The International Psycho-Oncology Society:
Bringing Attention to the Psychological, Social and Spiritual Aspects of Cancer Care and Research

The International Psycho-Oncology Society (IPOS), founded in 1984, is the only international body devoted solely to the "human" aspects of cancer care and research – the psychological, social, behavioral spiritual domains, which contribute materially to quality of life. These issues are especially important in resource-limited countries where the treatment of cancer is largely palliative. IPOS recognizes that it is through collaboration with other international bodies that more attention, concern, education and training can be achieved to improve the aspects of care. A close working relationship with the International Association for Hospice and Palliative Care is important to meld a close tie to the global palliative care efforts.

IPOS is presently petitioning the World Health Organization to become a WHO non-governmental organization, to harness the expertise of its multidisciplinary members to contribute in critical areas of WHO global cancer control national programs, which have been developed for resource-rich and resource-poor countries. These programs target cancer prevention, early diagnosis, treatment, pain and palliative care. Psychosocial issues cut across all of these areas and, as such, can potentially contribute to each of these efforts. For example, cancer prevention and screening critically depends on understanding the cultural background, attitudes, language fears of outsiders, and concerns of a community. In cancer treatment, the control of pain, fatigue and distress is often central to tolerating radiation and chemotherapy. When treatment is palliative, as it is in most developing countries, the major effort has been pain control, especially obtaining narcotic analgesics. What has not received adequate attention is the need for better understanding of the emotional care of patients at home, and the need to support and educate families and to combat the stigma and negative attitudes of some communities, especially where fear of cancer is high. IPOS is proposing to work closely with WHO in its global cancer control programs, to add this cross-cutting issue of psychosocial care to its overall efforts in prevention, early diagnosis and screening, and treatment and palliative care.

Several other steps being taken are:

In conjunction with the European School of Oncology, a core curriculum of lectures on basic topics in psychosocial oncology is being translated into 5 languages, having been developed in English, through the American Psychosocial Oncology Society. The curriculum will be available to anyone at no charge online at www.ipos-society.org in 2005. At the 7th World Congress in Copenhagen in August 2004, plans began to add translation of these lectures into Polish, Russian and Lithuanian. We hope to work with the network of centers of excellence in palliative care in Eastern Europe to support the mental health workers and expand psychosocial care.

IPOS has an active tie to the African Organization for Research and Training in Cancer (AORTIC), and the Pan African Psycho-Oncology Society (PAPOS). AORTIC, through a Psychosocial/Quality of Life Committee, is committed to working with PAPOS, IPOS and International Cancer Training and Research (INCTR) pursuing these issues aggressively to assure that they are a fully integrated part of palliative care in Africa, utilizing the nurses, palliative care doctors, workers and volunteers to enhance their basic knowledge of the psychological issues and to give them the support of a network of people who are available to organize regional conferences and to organize traveling fellowships. There is a need to make these aspects of care more visible and more compelling to policy makers in all countries, especially in Africa and India where scant resources are available and stigma is high.

For more information, please go to the IPOS website: www.ipos-society.org. We welcome your participation and membership in IPOS, and we welcome ideas for new collaborations.
Dr. Jimmie Holland serves as the Liaison to National and Affiliate Societies, and she can be reached via e-mail at [email protected].

Jimmie C. Holland, M.D. Christoffer Johansen, M.D.
Founder, IPOS President, IPOS

7. Twinning: Hospice Connection in the Himalayas

In the Himalayan Kingdom of Nepal, where families take care of their own, there is a growing Hospice work to assist them in caring for their dying loved ones. Hospice Nepal was started about five years ago, by Drs. Gongal and Vaidya and others, first as a hospital ward, then branching out to their own eight bed inpatient facility and to home visitation teams.

Our family lived in Nepal during the early 80’s and during our last visit this past January, we were anxious to visit the growing work of Hospice Nepal. We were excited to wind our way through the narrow streets of Kathmandu to find their clean and attractive compound. The peaceful atmosphere there seemed like a sanctuary amid the bustling capital city of approximately 2 million people. Dr. Gongal welcomed us and took us on rounds, introducing us to patients and nurses. I brought them greetings from our chapter of Hospice in North Idaho where I have worked as a nurse for the past 5 years, and presented them with a picture of our staff and a financial gift. He seemed delighted with the gifts and told us that Hospice Nepal works on a donation basis and patients are not charged for their care.

I visited the nurses and patients several times a week and felt very welcome. I found the nurses well trained and delightful. They were eager to talk about their work and asked questions of “how we do things”. I was impressed with the dedication of the nurses and I encouraged them in the importance of their work.

Dr. Gongal, Dr. Vaidya, the Hospice nurses and I met and exchanged questions and ideas. I presented them with some written material that we use and have found helpful in our Hospice. Dr. Gongal encouraged the nurses to “get more into the patients” by listening to them share who they are and what they are feeling. Dr. Vaidya mentioned that it is good to hear what other Hospices are doing and to use the things that are helpful and will work in their culture. He teaches medical and nursing students in the Kathmandu valley, which includes hospice and palliative care.

After returning from our trip, I shared my experience with Hospice of North Idaho and they wanted to continue a relationship with the work in Nepal. We ordered the American Journal of Hospice and Palliative Care to be sent to them. We decided we would like to send a financial gift to Hospice Nepal so our staff signed up to have a small amount ($1-3) withheld from each bimonthly check. Our Administration matched what the staff gave and as a result we can send $366 dollars quarterly to our Sister Hospice Nepal.

In the months since our trip, Drs. Gongal and Vaidya, as well as one of the nurses Anusha Sharma, have kept us informed of the progress of Hospice Nepal. The inpatient unit is staying full; one of the local hospitals is starting a Hospice wing and has sent some of their nurses to be trained by the Hospice Nepal staff. They are in the process of training volunteer nurses to give hospice and palliative care to patients who live in their areas. The Hospice nurses will visit the patients close to the inpatient facility by bike and motorbike. They also have a plan to expand community service CohoN (Community Hospice Nepal) as they are able to train more staff and acquire a jeep for transport. Anusha Sharma, one of the Hospice nurses, writes “I too go for home visits these days. I enjoy home visits because we can give more advice to the family members and we can learn more from their (patient’s) life time experiences.”

Dr. Vaidya reports “We are also sending two of our staff nurses to Callicut, India for six weeks of palliative care training.”

Dr. Gongal wrote “We believe this (support and encouragement) to be a blessing from you all that will encourage us to continue to work hard to help the unfortunate people here. Your generosity touches us and our patients in a very special way …your effort to help us not only helps us in our finances, but just as importantly, keeps our morale high and helps us in our perseverance to establish Hospice on the ground and in peoples’ minds and hearts”

We are not sure where this” Sistering” between Hospice of North Idaho and Hospice Nepal will lead, but we are excited to have the connection? We have been thrilled to hear how they have expanded in these last months and our hope is that soon we can take some of our staff on a trip to Nepal where they can have a Himalayan adventure and a cross-cultural Hospice experience.

8. Webmaster's Corner: Anne Laidlaw

Webmaster's Corner

Welcome to the Webmaster's Corner!
Here you can learn about the new articles & features we've added to the IAHPC website each month.

This month we have allot of great things to tell you about and a few upcoming sneak peaks.

The IAHPC Hospice & Palliative Care Manual Second edition is coming soon. Watch the What's New page for its avalability.

Hospice & Palliative Care Educational Resources - Here is a list of educational resources available for clinicians working in pain and palliative care settings.

 Professionals Available to Spend Time Abroad - View professionals who are willing to spend time abroad. You can submit yourself to be added to the list to spend time abroad. We had 6 new listings this month! More Info Here

Purchase items with the IAHPC Logo on them using the link below to donate to the IAHPC while shopping for cool items at no extra cost to you!.
http://www.cafeshops.com/hospicecare 

The IAHPC Fact Sheets are now available in Portuguese and to download in MS.Word Format in Portuguese.

Our Book & Video Shop has has a few changes in the navigation to help you find your way around better. You can now view by author or category. Last month we added 4 more new titles with reviews.

The International Directory has had 38 new listings this month, a great resource for all.

Have a hospice and/or palliative care related question? Or just want to discuss hospice & palliative care issues? Join in at our Forum. No registration required. It's Free

Coming Events! Do you have a Hospice & Palliative Care event you wish to promote?
Please visit our Future Events section to view events and add your event to our website.
5 new listings added this month including a Hospice/Palliative Care course or two!

Did you know you can Subscribe & Save Up To 80% on popular magazine subscriptions while helping the IAHPC! Over 80,000 titles to choose from.
Click Here to learn more!

Sneak Peeks What's Coming!
We have more plans for exciting new additions to hospicecare.com in the coming months. We will be implementing a new search feature to help you find the information you require quicker. We are in the process of converting more documents to .pdf & .pda versions for your convenience. Drop by often & don't miss out!

Until next month!
Anne Laidlaw

IAHPC Webmaster
Comments/Questions about our website?
Email us at: [email protected]

9. Editor's Notes: Dr. Farr

Journal of Palliative Medicine

"The American Academy of Hospice and Palliative Medicine, the specialty association representing physicians and other health care professionals in the field, and Mary Ann Liebert, Inc. publishers are pleased to announce that Charles F. von Gunten, MD, PhD, FAAHPM is the new Editor-in-Chief of Journal of Palliative Medicine... Dr. von Gunten currently serves as Medical Director, Center for Palliative Studies, San Diego Hospice & Palliative Care, one of the nation’s oldest and largest hospice programs, and a teaching and research affiliate of the University of California, San Diego School of Medicine. He directs one of the largest fellowship programs in palliative medicine in the US. In addition, he serves as Chairman of the American Board of Hospice and Palliative Medicine…
Journal of Palliative Medicine, published bimonthly in print and online, is an interdisciplinary peer-reviewed journal that reports on the clinical, educational, legal, and ethical aspects of care for seriously ill and dying patients. It includes coverage of the latest developments in drug and non-drug treatments for patients with life-threatening diseases including cancer, AIDS, cardiac disease, pulmonary, neurologic, respiratory conditions, and other diseases. The Journal reports on the development of palliative care programs around the United States and the world, and on innovation in palliative care education." Reprinted in part from a press release issued on September 8, 2004 by Mary Ann Liebert, Inc.

The Academy of Hospice and Palliative Medicine

"The American Academy of Hospice and Palliative Medicine (AAHPM) announces the appointment of C. Porter Storey, Jr., MD, FACP as its first Executive Vice President. The position was created to strengthen the Academy's infrastructure and advance the practice of palliative medicine. Storey will assume the position in October.

Most recently, Storey served as Medical Director of Palliative Care Services at St Luke's Episcopal Hospital at the Texas Medical Center in Houston, Texas. He was also Associate Professor of Medicine at Baylor College of Medicine and Adjunct Assistant Professor in Symptom Control and Palliative Care at the University of Texas M.D. Anderson Cancer Center…." Reprinted in part from a press release issued by The American Academy of Hospice and Palliative Medicine.

Meetings

9th World Congress of the European Association for Palliative Care

Date of Event: 06-10 April 2005
Taking Place: Aachen, Germany

Languages (English, translation into French & German)
Contact: Saskia Jünger
Klinik für Palliativmedizin
Universitätsklinikum Aachen
Pauwelsstraße 30
52074 Aachen, Germany
Phone: +49 241 80 80 880
Fax: +49 241 80 33 80 379
Email: [email protected]
http://www.eapcnet.org/aachen2005

World Hospice and Palliative Care Day

Date of Event: 8 October 2005
Taking Place: Worldwide

A group of organisations including IAHPC, Help the Hospices and Voices for Hospices are planning events for the first World Hospice and Palliative Care Day next year - if you want to plan some events please let us know.
If you are organising a voices concert please see http://www.voicesforhospices.org/

Pain and Palliative Care Society

Taking Place: Calicut
Website: www.painandpalliativecare.org

The 6th Asia Pacific Hospice Conference
Sponsored By: Korean Society for Hospice and Palliative Care

Event taking place in: Sheraton Grande Walkerhill, Seoul, Korea
Date of Event: March 16-19, 2005

Contact: Conference Secretariat
Insession International Convention Services Inc.
Ph +82--2-3452-7153
Fax +82-2-51-8683
Email: [email protected]
Website of Event: http://www.aphc2005.org

III Advance Symposium on Palliative Care (In Spanish)
Sponsored by: UCPAR (Unidad de Cuidados Paliativos de Adultos de Rosario

Event taking place in: Rosario, Argentina
Date of Event: December 18-20, 2004

Directed by: Profesor Eduardo Bruera (The University of Texas MD Anderson Cancer Center).
Based exclusively on case discussions from UCPAR patients.
Objective: To consolidate evaluation norms, clinical practice and interdisciplinary work
For further information and registration, contact Mariana Sedliak [email protected]

Clinical Decisions, Ethical Challenges
Sponsored by the Australian Resource Centre for Healthcare Innovators (ARCHI)

Date of Event: April 21-22, 2005
Event taking place: Cairns Convention Centre
Further information and registration:
Phone: +61 (0)2 49240 900
Email: [email protected]
ARCHI website www.archi.net.au

Texas Partnership in End of Life Care

Announcing the TxPEC High Flight of Champions Gala, to honor champions in End of Life Care. Mark your calendars and order your tickets early.

Date of Event: November 12, 2004
Event Taking Place: Frontiers of Light Museum Dallas, Texas, USA
Tickets Available in www.txpec.org
You can nominate candidates for this award via the website.
Further information, please contact Eric Sedillos at [email protected] or call (512) 453-9600

Paediatric Pain and Palliative Care Fellowship (Australia)

The Children’s Hospital at Westmead http://www.chw.edu.au is the largest and busiest paediatric hospital in Sydney/Australia (240 beds, > 25,000 admissions/year).

Applications are invited for the post of a Paediatric Pain & Palliative Care Fellow
Commencing 17 January 2005 at the Pain and Palliative Care Department (Head Dr. John J. Collins).… We are seeking applications from physicians with more than 4-5 years experience in Paediatrics and/or Anaesthetics, who aim a career in paediatric palliative care. Further information and the job description can be obtained by the Head of the Pain and Palliative Department Dr. John J. Collins [email protected] or the current Fellow Dr. Stefan Friedrichsdorf [email protected]

Join IAHPC

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 -
We accept Major Credit Cards, Travelers Checks, Money Orders, Checks or Wire Transfer
http://www.hospicecare.com/join.htm

Or Contact
Ms. Ana Restrepo
E-mail: [email protected]

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

Ways to Help IAHPC Financially

Subscribe & Save Up To 80% on popular magazine subscriptions while helping the IAHPC! Over 80,000 titles to choose from. Click Here to learn more!

Make a donation
http://www.hospicecare.com/donate/donate.htm

Become a member, or sponsor a member, using the link below
http://www.hospicecare.com/join.htm

Buy books from within our On-line Bookshop
http://www.hospicecare.com/Bookstore/

Purchase items from www.wellspent.org using the link below
http://www.wellspent.org/Causes/CauseInfo?c=1050

William Farr, MD IAHPC Newsletter Editor Bob Child Distribution Manager
www.hospicecare.com