International Association for Hospice and Palliative Care
Dear Members and Colleagues:
The May issue of our newsletter is now published on our website at URL: http://www.hospicecare.com/newsletter2004/may04/index.html
Table of Contents:
The Chair and Executive Director's report- awards, grants and more.
Article of the month: "Confirmation of the "disability paradox"
among hospice patients: Preservation of quality of life despite physical ailments and psychosocial concerns" by Dr. Carla Ripamonti
Book Reviews: There are six by Dr Roger Woodruff
Ethics Page: EMPATHY AS COGNITIVE ACCESS TO ANOTHER PERSON'S SUFFERING by Dr. Paulina Taboada
Regional News: The EAPC East Newsletter
Webmaster's Corner
Editor's Notes
Regards,
Eduardo Bruera, MD, Chair
William Farr, PhD, MD, Vice Chair
Message from the Chair &
Executive Director
Eduardo Bruera, MD (USA)
Liliana De Lima, MHA (USA)
Dear Readers:
This month we have several important announcements:
First, we are glad to inform you that the Amrita Institute of Medical Sciences in Kerala, India, was selected as recipient of a grant for our IAHPC Faculty Development Program. The program supports faculty full time positions in developing countries by paying for their salary for a full year, and half of it for a second year, with the condition that the institution/hospital signs a four year contract with the faculty person. This award was made possible thanks to a joint effort between IAHPC and the National Hospice and Palliative Care Organization (NHPCO). The NHPCO has provided IAHPC a grant to
support this program at Amrita and to establish an ongoing relationship with IAHPC in the developing world. Many thanks to Stephen Connor, PhD, from NHPCO for his interest and commitment to this project.
We are also proud to let you know that IAHPC has established a partnership with the Centre for Distance Learning at the Tom Baker Cancer Centre and the University of Calgary in Canada. We will support Doctors Debbie Norval, Marietta vd Berg, Mari Engelbrecht and Elizabeth Gwyther from South Africa in the Online Course Becoming an Effective Facilitator of Web-based Learning. We are excited that we are be able to support these extraordinary individuals in this important initiative and hope that it will serve as a tool for further development in web based palliative care training.
As we did last year, IAHPC will be participating in the American Society of Clinical Oncology (ASCO) annual meeting in New Orleans, June 4-7. We have been assigned a booth in the Exhibition Area. Ana Restrepo, our manager of member services, and Liliana will spend time there, so stop by to say hello, ask questions about IAHPC, find out about our programs, and ways you can help the organization. As some of you may know, ASCO is the leading meeting for oncologists and each year almost 30,000 oncologists from around the world attend this meeting. Over the last years ASCO organizers have increasingly become interested in palliative and supportive care issues and this trend continues to grow, with more and more palliative care presentations taking place during each meeting. If you plan to be in New Orleans, please stop by our booth # 524. We look forward to seeing many of our members there.
We are very grateful for a US $50,000 grant from the US Cancer Pain Relief Committee to support an IAHPC proposal entitled, "IAHPC: Sustainability and Capacity Building Funds." This grant will help us continue our work and enable institutions; individuals and governments to change and/or adopt appropriate palliative care policies and programs in their countries and regions. As you know, we have kept our administrative and office costs to the minimum which enables IAHPC to transfer most of these funds to the communities and individuals who need it.
Our Clearing House program continues to expand. Many thanks to the individuals, hospices, organizations, libraries and universities who have sent donated journals and books. Please remember that we also take medical supplies, either new or in excellent
condition. Special thanks to Doctor Roger Woodruff, member of our Board of Directors for his donation of many copies of his book Palliative Medicine (3rd ed), published by Oxford University Press and to Ms. Pamela Bennett, from Purdue Fund, for their continued donation of Pain, Oncology Nursing and Palliative Care Journals.
We have a new page in our website called Symptom Assessment and Research Tools at http://www.hospicecare.com/resources/pain-research.htm that we hope will be a helpful way to find palliative and pain assessment tools in a single place. We invite you to visit this page and if there are any tools not listed in it, let us know. We will be happy to upload them. Please remember that we list tools that are free and universally available.
Until next month,
Eduardo Bruera, MD
Chair, Board of Directors
Liliana De Lima, MHA
Executive Director
Article of the Month
Carla Ripamonti, MD
(Italy)
Confirmation of the "disability paradox" among hospice patients:
Preservation of quality of life despite physical ailments and
psychosocial concerns
Kutner JS, Nowels DE, Kassner CT, Houser J, Bryant LL, Main DS.
Palliative and Supportive Care 2003; 1: 231-7
The purposes of this cross-sectional study was to describe quality of life (QOL) and psychosocial and spiritual issues experienced by hospice patients and to evaluate the correlation between QOL, psychosocial and spiritual issues, and patients' diagnosis, functional status, and duration of stay and location of hospice care.
The study was set in the Population-based Palliative Care Research Network (PoPCRN), based at the University of Colorado Health Sciences Center (Division of General Internal Medicine). Sixty-six patients without cognitive impairment, from 14 hospices participated in this study.
A template for instrument domains was obtained from the literature and the investigators' experience. The template was then refined to produce the final study instrument through several steps that identified 10 key psychological, social and spiritual domains:
abstractions, spiritual/religious, social role, self and intimate others, negative and positive emotions, tasks of dying, external issues, loss and terminal process. The McGill Quality of Life Questionnaire (MQOL) (0= bad to 10 = good) was used in its original form, all
other items were selected from previously validated instruments or written by the investigators. The Karnofsky Performance Scale and the following questions were added to the final instrument: 1. wondering "why me?", 2. loss of appearance, privacy, health,
confidence, dreams, hope, loved ones, usual role both within and outside the family, 3. communication.
Of the 66 patients studied, 56% were women, 53% had cancer, 53% pulmonary and/or cardiac disease, the median age was 76 years, 46% were cared for in hospices and 39% at home. The median duration of hospice care at time of interview was 49 days.. Seventy-three percent of patients were very satisfied with the hospice care they were receiving.
The physical components of QOL (physical symptoms and physical well-being) were rated lower than the psychosocial and spiritual aspects (support, existential well-being, psychological symptoms) in the McGill Quality of Life (MQOL) questionnaire. The mean MQOL Total Score was 7.1 and the mean Support subscale score was 8.6. Karnorfsy score < 50 was associated with worse existential well-being; a diagnosis of cancer was associated with greater existential well-being. Eighty-two per cent of the patients agreed that spiritual health contributed to physical health and received support from their faith. Seventy-two per cent of patients believed in a new life after their death. A third of the patients expressed concern regarding the length of time to death, an anguish at the idea of a painful death and felt no hope whatsoever.. However, most
patients expressed a strong sense of hope and half of them had a specific short or long term aim.
Although 76% of the patients were worried about failing health, not many were concerned about the loss of their role within and outside the family. Despite the fact that these are patients in poor physical condition due to the advanced stage of their illness,
and well cared for within a hospice programme, their quality of life was maintained.
Why I chose this article
This is one of the very few studies which reveals that despite the progress of the disease, the deterioration of physical conditions and the dying process, patients cared for in a hospice programme can maintain a good quality of life. Someone describes this as the
"disability. Paradox". The question many should ask themselves is "palliative care really does work?"
Book Reviews
Dr. Roger Woodruff
(Australia)
LEAN ON ME. Cancer through a carer¹s eyes.
Lorraine Kember. L. Kember Publications, 2003.
130 pp. ISBN 0-646-499-69-6. Price (includes postage and handling) $AU28.50, $US29,
£14, Euro 23
Available from L. Kember Publications, PO Box 70, Beechboro, Western Australia,
6063, Australia. Email lorakeet@iinet.net.au
This is one woman's very moving story of caring for her husband for two years while he battled mesothelioma.
The emotional insights she shares with her diary would be a great comfort to anyone caring for someone with advanced cancer or any other terminal illness.
Her focus on his quality of life as she educates herself about the medical aspects of his care is quite remarkable, and would be inspirational to others in a similar situation and would empower them with realistic hope.
This little book should have a place on the shelf of any hospice or palliative care service, to be loaned out to the ones who care for our patients and whose struggles and problems are often hidden by those of the patient.
Strongly recommended.
WATCH WITH ME. Inspiration for a life in hospice care
Dame Cicely Saunders. Mortal Press, 2003.
50pp. ISBN 095441922-7. RRP £6.50. Available at www.mortalpress.com
This is a selection of five essays and reflections by Cicely Saunders, one taken from each decade of her involvement with palliative care. They demonstrate her continuing concern about how we might best meet the needs of those facing imminent death, particularly the spiritual dimension and the search for meaning. At the same time, they provide insight into her own religious and philosophical attitudes that have sustained her remarkable
professional career.
I thoroughly enjoyed reading this little book. Not just for the historical colour or the striking clarity of her communication. It was because I was continually challenged to reflect on my own concepts and practices, whether she was speaking to me from 1965 or
2003.
Anyone who works in palliative care will be stronger for reading this little book.
Highly recommended.
WHAT DYING PEOPLE WANT.
Practical Wisdom for the End-of-Life
David Kuhl. Public Affairs, 2002.
317pp. ISBN 1-58648-197-5. RRP $US14, £7.
In this excellent book, Kuhl uses patients' stories to take us through the background, the meaning, the practicalities, and the benefits of providing appropriate and meaningful end-of-life care. The first four chapters are about dealing with a terminal illness on a practical
level. The second five deal with the psychological and spiritual experience of that journey.
In the introduction it states that this is a book for patients with a terminal illness although I fear it would be too weighty for many of the patients I see. However, I think it is a first-class primer for anybody who works in hospice and palliative care who wants to better understand the non-physical aspects of the care we deliver.
PSYCHOSOCIAL ASPECTS OF PAIN.
A handbook for Health Care Providers.
(Progress in Pain Research and Management, vol 27)
Robert H. Dworkin and William S. Breitbart (Eds). International Association for the Study of Pain (IASP), 2004.
664 pp. ISBN 0-931092-48-5. RRP $US 89.
This is a comprehensive resource for health care professionals, detailing the psychological, psychiatric and social aspects of pain. In contrast to other volumes on this topic that are written for specialists in mental health, this book is directed at all the
clinicians involved in the management of pain.
The opening chapters discuss the biopsychosocial models of pain. The second section deals with evaluating both acute and chronic pain. In the chapters on evaluating and treating pain, the emphasis on the patients' perspective is welcome. Part four is about
complex disorders including complex regional pain syndrome and there is a chapter on the psychological and psychiatric dimensions of palliative care. The management of pain in children, the elderly, and patients with drug abuse problems are dealt with in the next
section. The last section of the book deals with the influence of coping styles, personality traits and sex differences in the causation and management of pain.
The editors and IASP are to be congratulated for the production of this book. It is a well-referenced, indexed, and comprehensive review of the non-physical aspects of pain management. These include complex and difficult issues that confront health care professionals on a daily basis, and this volume certainly has a place on the library shelf of any pain or palliative care service.
SEVEN DYING AUSTRALIANS
Allan Kellehear and David Ritchie (Eds).
Innovative Resources The Publishing Arm of St. Luke¹s Anglicare, 2003. 128 pp. ISBN 0-9580188-0-4. RRP $AU29.15. Available from
www.stlukes.org.au/innovativeresources/
This book brings a glimpse of seven individual lives - seven Australians facing the prospect of their own death. They were given a series of questions to ponder: How do you understand this time in your life? What surprised you about this situation and what
didn't? What lessons do you feel you have learnt from this time? Knowing what you know now, what would tell others about the confrontation with mortality?
I thoroughly enjoyed reading the narratives. They made me wonder just how much more the dying patients that I work with might have to tell me if only I could spend more time with them. And they reminded me that there is always room for improvement in the way
we accommodate the needs of those facing death.
Anyone who works in hospice and palliative care will be richer for reading this little book.
PRIMARY PALLIATIVE CARE.
Dying, death and bereavement in the community.
Rodger Charlton (Ed). Radcliffe Medical Press, 2002.
234 pp. ISBN 1-85775-573-1. RRP £27.95 $US 59.35
The increasing involvement of general practitioners and the primary health care team in the delivery of palliative care to patients and their families in the community is a welcome, albeit slow, development. The goal of this book is to provide "a description of
the pertinent issues that constitute primary palliative care."
There are useful chapters on clinical governance, the role of the primary health care team in palliative care, care for caregivers, and ethics. But I was concerned that the chapters on pain and symptom control were possibly too brief to be practically useful. The
discussion on complementary therapies lacked any scientific vigor. And placing Kubler-Ross' stages of acceptance (as seen in the patient, pre-mortem), in the same box with Parkes' stages of bereavement (as seen in the relatives, post-mortem) was, I thought, a bit confusing.
Ethics Page
Paulina Taboada, MD, PhD
(Chile)
EMPATHY AS COGNITIVE ACCESS TO
ANOTHER PERSON'S SUFFERING
Illness and suffering are first and foremost subjective experiences. Since one cannot have direct access to another's person consciousness, the question about the possibility of gaining an access to another person's conscious experiences rises especially in the context of the care for terminally ill patients.
To provide a proper account for intersubjectivity has been a major philosophical problem. The diverse philosophical answers proposed throughout history have had an impact on medical practice and ethics. So, for instance in the 18th. Century, Hume's conception of 'sympathy' was applied to the task of developing a medical ethics by one of Hume's friends — the Scottish physician and medical ethicist John Gregory (1724 – 1773). Gregory was concerned about the practice of medicine in his time. He thought that physicians were putting their own monetary interests first, focusing on themselves, and neglecting the needs of their patients. He found in Hume's concept of sympathy a basis for a more humanitarian practice of medicine and made this concept the core of his medical ethics (Gregory, 1770; McCullough 1999). Gregory's conception gave origin to the image of the 'sympathetic physician.' Sympathy gave a basis for a more humanitarian practice of medicine and made this concept the core of his medical ethics.
The Humean conception of 'sympathy' demands that one suffers the same that another is suffering:
"I come now to mention the moral qualities peculiarly required in the
character of a physician. The chief of these is humanity; that sensibility of heart which makes us feel for the distresses of our fellow-creatures, and which, of consequence, incites us in the most powerful manner to relief them. Sympathy produces an anxious attention to a thousand little circumstances that may tend to relief the patient; an attention which money can never purchase. (Gregory, in McCullough 1998, p.38).
Following Hume, Gregory uses 'humanity' and sympathy' interchangeably. His views gave origin to the image of the 'sympathetic physician'. Sympathy is what binds people
together in society. However, this kind of 'emotional conversion' would prevent us from understanding the other in his 'otherness'. Moreover, the application of Hume's concept of sympathy to medical ethics may paradoxically result in the defense of selfish motivations. For, if it is my own uneasiness in the face of suffering which moves me to action, then, by relieving the other person's suffering, I am really relieving my own suffering. Thus, a critical analysis of Hume's account on sympathy shows that rather than establishing the feasibility of intersubjectivity, this account paradoxically
undermines it (Welie 1998, Mc Cullough 1999).
Alternative understandings of sympathy and its role in ethics have been developed by some 20th. Century phenomenologists (e.g. Scheler, Stein). I think that their views can shed light on the current search for a 'more compassionate medical ethics' (Singer,
1994). Indeed, an attempt to show the fruitfulness of Scheler's analysis of sympathy to providing a cogent foundation for medical ethics has been recently undertaken by Welie (1998). Further contemporary efforts to clarify the role of compassion in medical ethics have been undertaken by Pellegrino & Thomasma (1988), Thomasma & Kushner (1995), Dougherty & Purtilo (1995), and others. Nevertheless, the question is far from being settled. Indeed, at the bottom of the current bioethical debate on the need for a 'more compassionate medical ethics' a fundamental ambiguity about the precise nature of compassion still persists.
In this context, Edith Stein's (1980) understanding of 'empathy' as the capacity to grasp the object of another person's conscious experiences, offers interesting perspectives. Stein notes that the possibility of attaining intersubjective knowledge seems self-evident, at least to a certain extent. But on the other hand, it is also evident that we do not have an immediate apprehension of another person's thoughts and conscious activity. It is only through bodily events (e.g. blushing, smiling), body movements, or communication
through language that we gain an access to the other person's inner world. Hence, it should be noted that when we perceive the 'other', we perceive always his body as a totality. Moreover, we perceive the 'other' always as being in a given situation. We do not perceive, by itself, frowns and redness in the face. We perceive
a person who in a certain situation becomes red. It is this totality – the 'body in situation'- that allows us to grasp, for instance, that this other person is angry. In isolation, the gesture would mean nothing. We perceive the other person's body as a totality and his gesture as having practical significance. We may refer to this as a
'body language', a language that at times communicates more eloquently than speech. Moreover, each person develops a certain corporeal 'style', a certain bodily bearing which identifies the lived body as own.
Health care personnel in general – and particularly those working in palliative care should pay special attention to the 'body language' of their patients. Moreover, they should make an effort to learn the unique 'style' of each patient.
Regional News
EAPC-East Newsletter
NR 21– April 2004
Reprinted with permission.
Dear Friends,
We are happy to announce the increased information in Russian available now from the web site www.eapceast.org There is a real information gap to fill so there will hopefully be much more to come. Please spread the information to your Russian speaking colleagues. There are plans for a translation of the EAPC-east Newsletter into Russian from the coming issue. We will let you know!
Textbook on the treatment of cancer pain – in Russian
There has just been published a textbook on the treatment of cancer pain in Ukraine. The book has been published in the course of cooperation between the Department at the Warsaw Cancer Centre, the Warsaw Oncological Hospice and colleagues in the Ukraine - the University in Kiev and the Oncological Hospital in the town of Khmielnicki.
The book presents clear and detailed descriptions of the WHO analgesic ladder and describes all the trends in the treatment of cancer pain. This is probably the first monograph concerning this subject ever to have been published in the Ukraine. The language of publication is Russian. Please acknowledge the title of the book: Schlapak I, Jarosz J (eds): Lyecheniye bolyevogo sindroma v onkologii; Rowno 2003.
Database related to cancer pain and palliative care
This is a searchable database of over 30,000 references related to Cancer Pain and Palliative Care. The database was developed and is maintained by Dr. Nathan Cherny, who is the Director of the Cancer Pain and Palliative Care Service in the Oncology
Department at the Shaare Zedek Medical Center in Jerusalem .
http://www.chernydatabase.org/
The database provides you with an unrivalled gateway to the medical literature pertaining to all aspects of Pain and Palliative Care. We hope it will be of use to all clinicians and researchers working in this field.
Importantly, the database is also available as 2 EndNote® reference manager files for use on your personal computer. Used with the reference manager software "EndNote®", you can use the database for writing and research. A free trial version of this software is available at: http://www.endnote.com/
Russian translation of Setting up a Hospice Service by Graham Perolls, translated
by Elena Vvedenskaya.
The text is built on experiences on starting the Hospice Sperantei in Brasov, Romania and is one of a series of Fact Sheets published by hospice information. You can find the whole text to down load in Russian from the web site www.eapceast.org
A report from Vladislav Mykhalsky on "Palliative Care and HIV/AIDS" a conference in Kiev, Ukraine, February 25-28, 2004.
The goal of the conference was to improve the care and treatment of HIV/AIDS patients in Ukraine, Moldova, and Russia. Its importance is emphasized by recent attention to the region, which has some of the fastest growing rates of HIV/AIDS infection in the world.
As it is underlined in the United Nations Development Program report (17 February, 2004) the impact is compounded by still insufficient public awareness, frequent stigmatization and lack of adequate policy instruments to cope with the disease. Up to one out of every one hundred adults living in these three countries is now estimated to be carrying the virus—a threshold above which efforts to turn back the epidemic have failed in many other countries. Nonetheless, the region also has success stories, from which valuable lessons should be taken. Please find the full report to down load directly from the web site www.eapceast.org
Hospice movement in Hungary and experiences with hospital supportive teams a report by Katalin Hegedus including the history of the hospice movement in Hungary and the starting of the Hungarian Hospice Foundation in 1991 to the beginning of the process of integration into the health care system to the present situation. There is also a passage on successes and failures. The experiences with a hospital supportive team as well as plans for the future are also covered. The last passage is about policy changes. Please find the article to down load from the web site www.eapceast.org
Free booklet on bereavement
"Your bereavement - living through it" by Sarah Wheatley.
This helpful booklet has been written by Sarah Wheatley, a Macmillan Nurse from the UK. Though intended for a UK audience the underlying principles are generally applicable. Thanks to Sarah and the Eastbourne & County Healthcare NHS Trust this booklet is available free of charge.
To order a free copy please send your name and postal address to:
avril@hospiceinformation.info
Grants for the EAPC Research Forum in Stresa 4-6 June, 2004
This time the OSI travel grants were presented to applicants who had accepted abstracts for posters or oral presentations in Stresa. The grantees are: Katalin Hegedus, Hungary, Tatyana Ionova, Russia, Urska Lunder, Slovenia, Andrei Novik, Russia and Elena Vvedenskaya Russia.
ABC on palliative care – BMJ – British Medical Journal
Please find an article on Nausea, vomiting and intestinal obstruction written by Mary J Baines to down load from the web site www.eapcest.org
We take all the possibilities to distribute our Newsletter and if we e.g. find a list of e-mail addresses from a palliative care course we make contact. If you do not wish to receive the Newsletter please let us know: info@eapceast.org
All the best until next time!
Sylvia Sauter Carl Johan Fürst
IAHPC Webmaster's Corner
Anne Laidlaw
Welcome to the Webmaster's Corner!
Here you can learn about the new articles & features we've added to the IAHPC website each month.
What's New! FREE eBook Download! We are pleased to announce our IAHPC Hospice & Palliative Care Fact Sheets are now in eBook format. You can save this eBook to your computer & read anytime!
Educational Resources – visit our list of educational resources available for clinicians working in pain and palliative care settings.
Our Book & Video Shop has 5 new reviews this month to help you learn more about each title.
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.
Events To Go To! 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. 2 new listings added this month.
2004 Sponsorship Program! We now have new options on how you can donate to the IAHPC! From a Platinum Sponsorship to a Bronze Sponsorship there are many levels and sponsor benefits you can enjoy!
Remember! Stop by our What's New page to view the latest stories & events in Hospice & Palliative Care around the world.
The International Directory has had 14 new listings this month, a great resource for all.
What's Coming! - Stay tuned for details. We have plans for exciting new additions to hospicecare.com in the coming months. Drop by often & don't miss out!
Until next month!
Anne Laidlaw
IAHPC Webmaster
webmaster@hospicecare.com
Editor's Notes
William Farr, PhD, MD
Vice Chair
The National Consensus Project for Quality Palliative
Care (NCP)
The NCP has released "The Clinical Practice Guidelines" and they may be viewed on their website at URL:
http://www.nationalconsensusproject.org/index.html
New Journal Announcement and Call for Papers:
The Journal of Social Work in End-of-Life and Palliative Care will be published by Haworth Press, Inc. with the premiere issue in Spring, 2005. Manuscripts are accepted related to end-of-life and palliative care practice in a wide variety of settings: hospice, palliative care, hospitals, home health, outpatient, primary care, oncology settings, dialysis treatment, transplant, etc. and related to a wide range of special topics including: social work and interdisciplinary practice interventions, innovations in practice, evaluation of practice (including cost-benefit), end-of-life decision making, ethical issues in end-of-life care, grief and bereavement, and policy issues.
To be considered for the premiere issue, manuscripts should be received by April 30, 2004, however manuscripts will be accepted on an ongoing basis for this quarterly journal.
Please send four copies of manuscript 15-20 pages in length, APA style, to Ellen L. Csikai, editor, The University of Alabama, School of Social Work, Box 870314, Tuscaloosa, AL, 35487-0314. For questions, call: 205-348-4447 or email: ecsikai@sw.ua.edu.
Argentina: A Report
The International Observatory on End of Life Care has added a new country report on Argentina by one of our team members, Silvia Paz.
Please do take a look at this excellent report at the following URL:
http://www.eolc-observatory.net/
Portugal
AMARA
Associação pela Dignidade na Vida e na Morte
www.amara-project.org
"We are a Portuguese association helping dying people, their families and all professionals dealing with death. We were founded in October 8, 2003. We would like to see how both our associations could share experiences and eventually translate some of you documents into Portuguese (so they can be used in Portugal, Brazil and all other Portuguese speaking countries). And also, we would be pleased to integrate your project (helping you whenever and however we can)."
Miguel Borges, Executive Vice-President
Europe against Pain…"Don't suffer in silence"
Looking for ideas…for the next EFIC Congress
"Pain in Europe V", Istanbul,
September - 2006
Please send ideas and suggestions for plenary lecture topics and speakers,
and for topical seminars, to:
Prof. Marshall Devor (Chair, Scientific Program Committee)
marshlu@vms.huji.ac.il or
Ms. Sarah Wheeler (EFIC Executive Officer)
efic@internet.gr
FAX: + 30 210 992 6382,
Foukithidou 2 16343 Ilioupolis, Athens, Greece
News from Cote d'Ivoire
Ruban Rouge Côte d'Ivoire (RRCI) is an Ivorian NGO committed to fighting HIV/AIDS. Since 1994, the year of its creation, RRCI main objectives are to:
1. Increase the general population awareness to the AIDS pandemic through sensitising activities in rural and urban areas, schools and private companies
2. Develop appropriate care and support for people living with HIV and AIDS through daily follow-up, psychosocial and nutritional support, medicines supply, massotherapy, therapeutic and adherence education at the Centre Plus as well as home based and palliative care.
3. Reduce the economic vulnerability of PLWHA as well as their families by creating conditions whereby they could support themselves (e.g: income generating activities).
The Centre Plus ( RRCI care centre) was established in 1998 as a daily follow-up centre for opportunistic infections by the UNAIDS initiative of access to drugs. By December 2003, 2016 individuals had benefited from its services. To date, 572 persons are
medically supported by the centre with two-third of them at the AIDS stage. Both home and palliative care are led twice a week. As the need for palliative care increases dramatically we look for ways to exchange experiences with other institutions committed in that field and improve our services and relieve the pains of those who are suffering at the end of their lives and help them die with dignity.
Editor note: for more information about this country go to URL:
http://www.cia.gov/cia/publications/factbook/geos/iv.html
Looking for a Twinning Partner?
A new organization based in Kenya that cares for patients with AIDS in both the inpatient and outpatient setting is looking for a twinning partner to improve training and transfer of information. If you are interested, please contact:
Michael. O. KOwuor
Program Coordinator
VIAGENCO
BOX 20, MBITA
shc@MBITA.MIMCOM.NET
Clearing House Project Feedback
"Thanks so much for the journals and books you sent to our pain clinic.It will go long way in developing our stock of matereial.
Thanks again. Kindly send us more (different books and journal) if you have any.
Sukdev"
Dr. Sukdev Nayak,
Anaesthesiology, Pain Relief & Palliative care,
A.H. Regional Cancer Centre, Cuttack, Orissa.
Hospice Administrator Certificate Program
June 21-23, 2004
Hyatt Regency Oak Brook
Chicago, Illinois, USA
Information and registration:
www.cahsah.org/education/2004/
IAHPC Clearing House Project
Donate books and journals to be sent to colleagues in developing countries. Contact Ms. De Lima @ ldelima@iahpc.com
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 —> http://www.hospicecare.com/join.htm
Or Contact
Ms. Ana Restrepo
E-mail: admin@iahpc.com
Membership Benefits
The most important benefit of membership is being a part of an organization that is trying to help colleagues particularly in developing countries. We are dedicated to 'sharing hospice/palliative care information world wide'. Your membership subscription makes this possible. As an IAHPC member you are entitled to reduced registration fees at our annual meeting and associated congress; you are eligible to apply for a Travelling Fellowship; you may download the IAHPC Fact Sheets from our Web site and use them as you wish; you also are eligible for a reduced subscription rate to 8 journals:
-Journal of Pain and Symptom Management,
-The American Journal of Hospice and Palliative Care,
-Palliative Medicine,
-Journal of Palliative Medicine,
-International Journal of Palliative Nursing, and the
-CMD Bulletin Palliative Medicine
-European Journal of Palliative Care
-Progress in Palliative Care
Alou Website Design (the designer of the IAHPC Website) will offer a 10% discount rate to IAHPC members who buy any services or products from them. And they will receive and additional 10% discount if the website is for a not for profit organization. If you are interested in contacting them, click on their link on the bottom of our home page. Specify that you are an IAHPC member and give your membership number to receive the discount.
There are at least 6 Ways to Help
IAHPC Financially
-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/bookstor.htm
-Purchase items from www.wellspent.org using the link below
http://www.wellspent.org/Causes/CauseInfo?c=1050
-Purchase items with the IAHPC Logo on them using the link below
http://www.cafeshops.com/hospicecare
-Sign up for Internet Service through VIP Powernet using the link
below
Thanks. WCF
William Farr, MD
Newsletter Editor
Bob Child
Distribution Manager
www.hospicecare.com
