International Association for Hospice and Palliative Care
Subject: IAHPC Newsroom 2005; Volume 6, No 5, May
William Farr, PhD, MD
Editor
Liliana De Lima, MHA
Coordinator
Alou Design
Layout and Distribution
To send an email to one of the IAHPC Newsletter team members,
visit the following page http://www.hospicecare.com/contact.htm
Dear Members and Colleagues: The May, 2005 issue of the IAPHC Newsletter is now on our website at URL:
http://www.hospicecare.com/newsletter2005/may05/index.html
PDA version is located here:
http://www.hospicecare.com/newsletter2005/may05/pda.html
Table of Contents:
Message from the Chair and Executive Director
Article of the Month
Book Reviews
Notes by IAHPC Traveling Scholars
What’s New Webmasters Corner
Editor’s Notes
Letters to the Editor
Regards,
Kathy Foley, MD
William Farr, PhD, MD
Message from the Chair and Executive Director
Kathy Foley, MD
Liliana De Lima, MHA
Dear readers:
Welcome to this edition of the IAHPC Newsletter. As always, we have a wealth of information about our activities, news on the development of hospice and palliative care around the world, announcements of meetings and events and information about funding opportunities. During April 7-10th, we participated in the Congress of the European Association for Palliative Care (EAPC) in Aachen , Germany. This Congress has become one of the most important in the field and attracts participants from many countries. We are very grateful with EAPC and especially with Heidi Blumberg for giving us the opportunity to have an exhibit space at no cost (included in this edition are some pictures). Many thanks to all those who stopped by to say hello, request information, enroll as members, or offer support. Your interest and commitment to the development of hospice and palliative care in the world is a great force behind what we do. While in Aachen, we held a meeting of the Board of Directors and later on, we enjoyed an open discussion with several of our members about our future strategic plan. It was a great opportunity to think about what lies ahead for a global organization like IAHPC and how we will continue meeting the needs of our members, patients, and care providers from around the world. We are currently working on the initial draft of our strategic plan, taking into account the recommendations and suggestions from our members. Thanks to all those who accepted our invitation to participate. We will share this plan with you once it is completed. We are also very grateful with Dr. Stefan Esser, the International Medical Director at Grünenthal for the financial and logistics support for our meeting in Aachen . Special thanks to Mr. Michael Wirtz, founder of Grunenthal GmbH and a strong supporter of palliative care. Over the course of many years Mr. Wirtz has donated personal funds to several philanthropic causes, including the creation of Chairs in Palliative Care in academic hospitals in Germany . He has set an example that founders and CEOs of other companies should follow. The IAHPC Traveling Scholarship Program continues to provide invaluable support to individuals from developing countries to attend courses, training sessions in palliative care centers, or participate in congresses and meetings. For the EAPC Congress, we were proud to sponsor three palliative care leaders: Dr. Martha Ximena Leon, from Colombia; Dr. Liz Gwyther, from South Africa and Nurse Odette Garcea from Romania . Also, we currently have in place a grant program to support scholars from India who attend the six week palliative care course offered in Amrita Institute of Medical Sciences in Kochi , Kerala. To date, we have funded three Traveling Scholars to this course: Dr. Nesamani Anand; Dr. Republica Sridhar; and Dr. Subathra Muthukumaran. Those interested in finding more about the course can contact Professor MR Rajagopal at [email protected] We have added new features to the Educational Resources page, in http://www.hospicecare.com/edu/, including treatment guidelines for HIV and AIDS patients. We also added a new page in the Resources section, called Standards of Palliative Care http://www.hospicecare.com/standards/ This page includes standards for the provision of palliative care in different countries, so if you know of a set of standards which is not included in this list, please let us know. Many thanks to Ms. Peggy Harper and Ms. Mary Callaway from Open Society Institute for their contribution to this Section. In our Resources Section we have a page called Teachers in Palliative Care. This page includes the names and specialties of individuals who are interested in spending time teaching palliative care in developing countries. If you would like to invite someone to your palliative care unit or hospice, this may help you identify a person whose profile fits your needs. And if you are interested in teaching palliative care in developing countries and your name is not listed, please submit it via our website. Just click on the link for the submission form to send us your information. To visit the Teachers page, click on Resources in the top navigation bar in our website. Remember you can make donations to IAHPC via our website. Donations to IAHPC can be made in memory of someone and are a good way to express your sympathy to a loved one in a moment of sorrow.
To make a donation to IAHPC click on https://www.hospicecare.com/give/donate.html
This month we will participate in the annual meeting of the American Society of Clinical Oncology (ASCO) in Orlando, Florida. As many of you know, the ASCO meeting attracts more than 25,000 participants from all over the world. We will be located in the Patient Advocacy Booth in the Exhibit Hall, so if you have plans to be in Orlando, stop by our desk and say hello. Ana Restrepo and Liliana will be there to answer questions and help. Many thanks to the ASCO Foundation for inviting us to participate in the Patient Advocacy Booth and for their interest in supportive and palliative care Until next month, Kathy Foley, MD
Chair, Board of Directors
Liliana De Lima, MHA
Executive Director
Article of the Month
Dr. Carla Ripamonti ( Italy )
Effects of spiritual care training for palliative care professionals
Author(s): Wasner M, Longaker C, Fegg MJ, Borasio GD
Abstract: Palliative Medicine 2005; 19:99-104
Much has been written in literature regarding the spiritual needs of patients with cancer in its various phases. Palliative Care has a holistic approach because it considers all aspects regarding the patient, but are the professionals working in palliative medicine prepared or trained to respond to patients who need help to find hope, peace of mind and spiritual resources? In this prospective study, the Authors studied the effects of spiritual training for Palliative Care professionals over a six-month period. The course “Wisdom and Compassion in Care for the Dying” took place in Munich from the 7 th to the 10 th of October 2002 . The course, designed by Christine Longaker was expressly intended for professionals and volunteers of the medical and social fields, coming from various cultures and religion. The aim is to teach participants how to recognize the various aspects of the suffering both of the dying patient and his family, how to be of help and how to provide the necessary support. Only those persons who are willing to question themselves and reflect on the fear of their own death as well as understand what are the needs of the dying and how to satisfy them are accepted for this course. This involves technical methods of active and compassionate listening as well as means of recognition of the spiritual and emotional suffering in patients with cognitive problems in addition to support to those going through a bereavement process. Participants were furthermore encouraged to practice contemplation and meditation as a technique of mental relaxation. All participants were asked to fill out three questionnaires: before and just after the training and then six months later. In addition to demographic data, the questionnaires included 1. numeric rating scales about general attitudes towards the work in palliative care (QoL, compassion with severely ill and dying persons, compassion with oneself, attitude towards one’s family, fear of the dying process and of death, attitude towards colleagues, perception of work-related stress), 2. the spiritual subscale of the Functional Assessment of Chronic Illness Therapy (FACIT-Sp) (Ref. Ann Behav Med 2002; 24: 49-58), 3. the Self-Transcendence Scale (STS) (Ref. Nurs Res 1991; 40: 5-11) and 4. the Idler Index of Religiosity (IIR) (Ref. Soc Forces 1987; 66: 226-38). The participants were also asked to name their main problems in dealing with death and dying, to report the changes as a result of the course and to evaluate the single course contents on a 4 point scale (0= unhelpful to 3= very helpful). For the IIR the assessments were performed only at baseline and six months after the course. Of the 63 persons who took part in this course, 51% of them were nurses, 14% hospice volunteers, 14% physicians, 5% social workers, 5% pastoral counselors. As far as the religious affiliation of the participant was concerned: 71% of them were Christians and 10% Buddhists. The regular spiritual practice was prayer in 56%, meditation in 54%, reading sacred texts 27%, and contemplation 22%. Moreover, of the 63 participants, 6% were severely ill, 35% had a family member or friend severely ill and 25% were in a bereavement process. With respect to baseline, 77% of the responders showed an improvement in coping with their emotions, their uncertainties, problems of communication and coping with problematic families. Sixmonths after end of course, participants who had a patient in the family reported a significant increase in their ability to accept the situation (p=0.03) and towards the end of training those who were in a bereavement process were capable of accepting the process better than before (p<0.01). Six months later this improvement was not maintained (p=0.26). Significant improvement and support were reported as far as a single aptitude towards working in a palliative care environment. As far as changes noted through use of validating instruments, the FACIT-Sp increased immediately after training and increased again after 6 months. The STS also significantly increased after training, but not after 6 months. IIR did not show any important changes with time. Results of FACIT-Sp and STS were strongly correlated at all times whereas the IIR was correlated to FACIT-Sp just before and right after training. Aptitude scores correlated with the FACIT-Sp and the STS during all of the evaluation period.
Why I chose this article
This is one of the very few articles published on the spiritual training of professionals in palliative care. The results are an encouragement to participate in courses of spiritual care training because of the benefits derived by those working in the medical field (and a great aim) and consequently their patients and families.
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
Book Reviews
Roger Woodruff, MD ( Australia )
Oxford Handbook of Palliative Care
Max Watson, Caroline Lucas, Andrew Hoy, Ian Back
Oxford University Press, 2005
819 pp
ISBN 0-19-850897-2
RRP: £24.95 $US 39.95
This new addition to the Oxford Handbook series is said to be based on The Oxford Textbook of Palliative Medicine, but aims to present the information in a concise and succinct format that is clinically practical for use in the day-to-day management of palliative care patients and their families. Overall, these goals have been achieved, and at a much more affordable price. The book starts with chapters on ethical issues, communication, drug use in palliative care, and an outline of the treatment of common cancers. The next section (270+ pages) is about symptom control. The material is set out well, with many bullet-point lists. There follow chapters on paediatric palliative care and palliative care in non-malignant disease, which I thought were particularly useful as we deal with these problems less often. The closing chapters cover spiritual care, the contributions of allied health professionals, complementary therapies, home care, the terminal phase, and bereavement. There is a brief chapter covering some medical emergencies and there are Crisis Symptom Control Guidelines, conveniently placed inside the front and back covers of the book, covering pain, nausea and vomiting, breathlessness, and restlessness and agitation. This little book is packed with practical information. As is customary with these handbooks, the font size is small and a little difficult to read without good light. It will be of use to any health care professionals who deal with palliative care patients and their families; this applies both to people who work in palliative care and to those who only occasionally run into a palliative care patient, for whom it can be recommended as a comprehensive practical guide that is relatively inexpensive. It would be even more useful if it came with a CD-ROM so that the information could be accessed on the computer terminal in the ward, the GP’s or District Nurses’ offices or, better still, on my handheld PDA.
More Information & purchase:
http://www.amazon.com/exec/obidos/ASIN/0198508972/iahpc-20
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CD REVIEW
GRACEFUL PASSAGES
A Companion for Living and Dying
Michael Stillwater and Gary Malkin
A Wisdom of the World Production, 2003
CD & Book (75pp) set. (A Music only edition titled Unspeakable Grace is also available.)
RRP $US19.95, 9.60
The Music and The Messages on this CD are designed for the alleviation of anxieties that may arise during the most vulnerable time of a persons life, when there may be a need for companionship, guidance, and a compassionate presence that addresses the heart of our humanity.
The Messages on Graceful Passages are delivered by respected teachers, practitioners and caregivers and comprise a wonderful diversity:
1. Letting yourself be loved, Lew Epstein (Non-denominational)
2. Returning Home, Tu Weiming (Taoist)
3. The Gift of Life, Alan Jones (Christian/Anglican)
4. The Long Walk, Jyoti (Native-American/Earth Wisdom)
5. The End of Suffering, Thich Nhat Hanh (Buddhist)
6. Franciscan Blessing, Maxamillian Mizzi (Christian/Catholic)
7. In Your Blessed Hands, Zalman Schachter-Shalomi (Jewish)
8. Unconditional Love, Elisabeth Kubler-Ross (Non-denominational)
9. We Are Not Alone, Arun and Sunandra Gandhi (Hindu)
10. Be Here Now, Ramdass (Non-denominational)
11. The Welcoming, Michael Stillwater (Non-denominational)
12. Swing Low, Linda Tillery (Christian/African-American)
In his introduction, Dr. Ira Byock says, “Graceful Passages is a unique resource for people who are facing the prospect of dying.” This CD makes the wisdom of experienced clinicians, counselors and spiritual advisers available to anyone who is confronting lifes end, either themselves or within their circle of family and friends. In contrast to our medical response to people who are dying, the listeners feelings need not be pathologic before Graceful Passages would have value, nor must this soothing resource be prescribed. Instead, Graceful Passages offers anticipatory guidance that is appropriate for anyone who is interested in exploring his or her personal mortality. I can attest to the power of the words and music to comfort, build confidence and connect listeners with their own inner wisdom. The resulting combination of tone and text is at once authentic and aesthetic.
Very moving. Very appropriate. Highly recommended.
Roger Woodruff
Director of Palliative Care, Austin Health, Melbourne , Australia
(April 2005)
IAHPC Traveling Scholars
Thoughts of Nurse Odette Gracea, Romania, about her Travel to the EAPC Meeting in Aachen, Germany as one of the IAHPC Travelling Scholars.
After I returned home to Romania after the EAPC Congress in Aachen , I started to think, “How can I help with the development of a palliative care nursing education program?” Currently in Romania a palliative care curriculum in the public education system does not exist. One of the workshops I attended was titled “How to establish a palliative care program.” It was particularly useful to me because it made me realize that I must go to our University and attempt to make it clear to them how important it is to implement a palliative care education program. Currently my goals are to develop, with your (IAHPC) help, and under the supervision of Dr. Daniela Mosoiu, a palliative care curriculum for nurses, adapted to Romanian cultural and social context. The curriculum must break down and rationalize many things that are not easily taught in lectures, like how to teach empathy, active listening, communication, presence, wisdom, etc. Romanians are not used to this kind of teaching. I’m still overloaded after the Achen experience. On the one hand, I feel like I need time to digest all of the information I received, while on the other hand, I feel like I don't have enough time to do what I want.
I feel like the IAHPC placed a small seed in my mind and I have the duty to care for it and not let it die.
Sincerely Odette Gracea
Romania
IAHPC Traveling Scholar goes to Korea
Thanks to the support through an IAHPC Traveling Scholarship Program, I was able to participate in the 2nd Global Summit of National Hospice and Palliative Care Associations, organized by Help the Hospices in Seoul , Korea , on March 15 and 16, 2005. This meeting was useful to learn about the different realities, achievements, challenges and problems colleagues from other countries face and to discuss proposals and future strategies to strengthen the development of palliative care associations in our countries. The meeting participants wrote and signed the Korea Declaration which was published in this Newsletter's last edition. Because of all of the above, my trip was a very enriching experience and I am sure it will contribute in a significant way to the development of palliative care in Uruguay . The trip was also a great opportunity to meet exceptional people who are doing wonderful work in many countries, and a strong stimulus to continue doing our job. I am very grateful to IAHPC for giving me this opportunity.
Without this support, I would have never been able to attend such meeting.
Dr. Eduardo Garcia Yanneo
IAHPC Traveling Scholar to Korea.
Montevideo, Uruguay, April 2005.
What’s New?
The National Council for Palliative Care (UK)
The National Council for Palliative Care (UK) published its Palliative Care Manifesto for the 2005 general election. All of the major political parties have pledged their support of palliative care.
To read more go to URL: http://www.ncpc.org.uk/newsroom/pcmanifesto_response.html The
European Association of Palliative Care (EAPC) Task Force on the Development of Palliative Care in Europe
A request of information:
The EAPC Task Force on the development of palliative care in Europe is seeking contacts to act as “key collaborators” and as “expert informants” to help them gather information on palliative care in the following eight countries:
1. Azerbaijan 3. Kyrgyzstan 5. San Marino 7. Turkmenistan
2. Estonia 4. Monaco 6. Tajikistan 8. Uzbekistan
We aim to explore, assess and comprehensively summarize the current state of the development of palliative care in the 52 countries that constitute the European region.
We gather information on palliative care via a range of research methods, including a systematic review of the literature, an analysis of existing palliative care directories and two surveys. The first survey is conducted amongst “expert informants” and it explores views on the national development of palliative care (qualitative survey). The second one is conducted amongst “key collaborators” and it looks at figures or estimates on the availability of palliative care resources (quantitative survey) in each studied country.
Our ultimate goals are to produce
1) a country by country report for the 52 participating countries
2) an atlas of palliative care developments in the European region
The Task Force plans to disseminate the final results in several ways, including publications in palliative care journals; conferences’ proceedings; presentations, and web-sites. All participating “key collaborators” and “expert informants” will be acknowledged as contributors to the project in all publications, and we hope they will remain as possible “contacts for information” about palliative care in their countries in future researches on the nationwide span of the discipline.
If you would like to contribute to this project or for any further information, please contact:
Dr. Silvia Paz
the EAPC Task Force research assistant
e-mail: [email protected]
telephone: +34 964 281933
fax: +34 964 728214
mail address:
Avenida del Puerto 20, 3 “6”
12100 Castellón (Grao) Spain
The Central and Eastern Europe (CEE) and the Former Soviet Union (FSU)
The Central and Eastern Europe (CEE) and the Former Soviet Union (FSU) Palliative Care Monthly Newsletter may be found at the following URL:
http://www.hospice.hu/newsletter/index.php?page=sub
Their Mission is:“The goal of this newsletter is to communicate the activities, diversity, challenges and progress being made in palliative care development, to foster networking, communication in Central and Eastern Europe and Former Soviet Union, and also to inform those throughout the world about the regional effort. The ultimate goal is to contribute to the development of care of the patients and families suffering with serious life-threatening illnesses. We can not achieve our goals without your active participation. The Newsletter has been developed by the Hungarian Hospice-Palliative Association, with the support of the Open Society Institute Network Public Health Program's International Palliative Care Initiative and the European Association for Palliative Care.”
The newsletter is available in English and Russian.
THRESHOLD CHOIR
The Threshold Choir honors the ancient tradition of singing at the bedsides of people who are struggling, some with living, some with dying. The voice, as the original human instrument, is a true and gracious vehicle for compassion and comfort. When invited we visit the bedsides a few times a week in small groups of three or four women and we invite families and caregivers to join us in song or to participate by listening. Our repertoire is chosen to respond to musical taste, spiritual direction and physical capacity and might include rounds, chants, lullabies, hymns, spirituals and classical choral music. The service is our gift; there is no charge. At times however, we have been given small donations expressing gratitude from families in memory of their loved one to whom we sang. These donations are used to cover ongoing expenses such as printing of brochures and sheet music. Using Kate Munger’s California Threshold Choir as a model we have prepared a repertoire of simple songs and chants. Our choir which numbers 25-30 members meets every other Sunday afternoon for two hours to practice and learn new songs. A request to sing comes from hospice nurses, social workers, chaplains or family members. We welcome new members in the Medford/Ashland area of Southern Oregon. In our community we are becoming a viable component of palliative care for hospice and end-of-life programs in home, hospitals, skilled nursing facilities, retirement communities and adult foster care facilities. Our vision includes helping other communities to build their own choirs by assisting them to recruit and train choir members and to connect them with local hospices and end-of-life care givers for patient referrals. The co-directors bring diversity to the Threshold Choir of Southern Oregon. I’lana Cotton is a musician and educator and Sarah Seybold is a hospice nurse with business and marketing experience. The Threshold Choir provides opportunities for women to share the gifts of their voices in compassion and truth at life’s thresholds; a sacred, delightful way to build community and be part of a unique, co-created adventure.
I’lana Cotton
9 Monterey Dr.
Medford, Or 97504
541 772 4022
[email protected]
Sarah Seybold, RN
532 Altamont St.
Ashland, Oregon 97520
541 488 3306
[email protected]
News from India
New Hospice Foundation for Cancer patients now established at Hyderabad India.
Message from: Dr. Nagendra
E-mail: [email protected]
Hospice is a newcomer to the health care industry. It is a concept developed by the Europeans in 1960’s involves total active care of advanced untreatable and terminal cases at the patients home or in a serene, quiet and comfortable place like an ashram where the patient is admitted when he is dying beyond salvation and where the survival is defined in days and weeks. The various services provided here aim to give comfort, quality and dignity to life. This concept became popular with establishment of over 3000 hospices in U.S.A alone. In India , on the contrary, as in most third world countries, the panorama is entirely different and in no way comparable to the West. The hospice movement, or for that matter palliative care itself, is still in its infancy in India, with only about 7 to 8 hospices in India. Cancer hospitals are crowded, and preference is given for patients whose disease has a hope for control or curative treatment through surgery, chemotherapy, radiation or combination of the three. Several terminally ill cancer patients, on account of poverty, ignorance and total lack of basic facilities, do not receive the required medical and nursing care. The very nature of the disease causes severe pre-terminal and terminal pain, and unless the required dosages of medicines are administered continuously in the right quantities and at appropriate intervals, the quality of the remaining life of the patient is very low with miserable death associated with severe pain and agony. There are estimated 7 to 8 lakhs cancer patients detected in the country every year, of which more than 80% of patients come for treatment when the disease has spread to regional nodes or beyond. Lack of awareness, inadequate access to proper diagnostic facilities, sub-optimal economics, and fear all lead to a large number of patients presenting themselves at an advanced stage of the disease. It is true that the family structure in India is such that the responsibility of looking after a patient rests with the family, but, to generalize and to assume that every patient has a loving family, caring for him or to assume that every patient has a family is to deceive ourselves. We have studied the types of patients and the reasons for admission to various hospices and are convinced, that there is scope to start many such hospices all over the country. Anyone familiar with India will not question the existence of destitutes and the life they are forced to lead - their plight gets compounded when they are struck with a disease that cripples them so much that they are unable to fend for themselves. At this newly established Hospice center a team of doctors and counselors will review the case history and advise a course of action for patient and family. The services are absolutely free and include Free-Home Care Service: For patients who prefer to live with their own families, Hospice Foundation of Hyderabad - home care team provides physical and psychological support. The organization consists of a group of dedicated, sincere, trained nurses (who help in dressing wounds, relieving pain, controlling nausea, stoma care and other distressing symptoms) & visiting volunteers (who provide non medical supportive care for individuals and their families). This extended support also includes counseling of family members and training them to look after their loved ones in need. Free Out patient Day Care Center: Patients can also come in on a day-care basis and return home in the evening. Palliative treatment, nursing care, medicines and occupational therapy are provided free of cost along with utmost dedicated support and service from the faculty. Hospice Foundation of Hyderabad welcomes everybody, patients and their families poor and rich alike. It is a secular organization that does not interfere in the religious beliefs and practices of our patients. The mission of Hospice is to help people suffering from extremely advanced cancer to be comfortable, peaceful and free of pain till the last. And, when death comes, every effort will be made that it should come without loss of dignity. A free inpatient Center is to be opened shortly. "When all that can be done to care has been done and to no avail, then the focus must shift to improving the quality of life that remains”.
For the needy contact: Hospice Foundation of Hyderabad Mother Teresa Charitable Trust,
6-3-456/22, Dwarakapuri colony,
Punjagutta, Hyderabad , A.P. India.
Email:[email protected]
Ph: 040 30911685
The National Hospice and Palliative Care Organization awarded a $3.35 million grant.
“The National Hospice and Palliative Care Organization was awarded a grant of $3.35 million from the Diana, Princess of Wales Memorial Fund in cooperation with the Franklin Mint to advance palliative care delivery in sub-Saharan Africa .”
To read more go to URL: http://www.nhpco.org/i4a/pages/Index.cfm?pageid=4561
From the International Observatory on End of Life Care
“Dear colleague,
“ South Africa ”
A country report for South Africa was recently posted on the website of the International Observatory on End of Life Care
(http://www.eolc-observatory.net/global_analysis/southafrica.htm)
The report tells how palliative care began more than 25 years ago in South Africa , led by groups of pioneering visionaries in places such as Cape Town , Durban and Johannesburg . Today, more than 60 organisations belong to South Africa ’s Hospice and Palliative Care Association and provide a wide range of services in different settings. With the help of a clearly defined strategy, the national association intends to establish palliative care provision in each of South Africa ’s 170 health authorities within the next five years. Underpinning the statistical data are voices from 46 activists that illuminate the meaning of palliative care in the South African context. With best wishes from the Observatory team. Anthony Greenwood
Information Support Officer”
From The Open Society Institute and the International Association of Physicians in AIDS Care “OSI-IAPAC International Fellowship in HIV/AIDS Palliative Care*
Request for Applications (revised April 5, 2005 )
The Open Society Institute (OSI) and International Association of Physicians in AIDS Care (IAPAC) are pleased to announce a Request for Applications (RFA) open to qualified candidates interested in participating in a one-year joint international fellowship in HIV/AIDS palliative care whose aim is to identify and support faculty clinicians in developing countries who can promote existing models of HIV/AIDS palliative care and advance work around new models for its delivery through clinical, research, educational, or advocacy activities carried out at the fellow’s respective academic institutions. An integral component of this program is individualized professional development whose goal is to enhance the fellow’s ability to develop and implement innovative, interdisciplinary HIV/AIDS palliative care activities within their respective communities. OSI is a private operating and grant-making foundation based in New York City that serves as the hub of the Soros Foundation network, a group of autonomous foundations and organizations in more than 50 countries. OSI and the network implement a range of initiatives that aim to promote open societies by shaping government policy and supporting education, media, public health, and human and women’s rights, as well as social, legal, and economic reform. The International Palliative Care Initiative began in 2000 to enhance hospice and palliative care activities for patients with life-limiting illnesses in Central and Eastern Europe as well as the Former Soviet Union and in South Africa in 2002. The International Palliative Care Initiative is now expanding to other regions of the world and focuses on professional education, drug availability for pain and symptom management, healthcare policy, and advocacy….” For details go to: www.iapac.org
Reflections on Pope John Paul II from Poznan, Poland by Professor Jacek Luczak
May be read at URL: http://www.oncology.am.poznan.pl/ecept/
Meetings Official Satellite Symposium of the 11th World Congress on Pain
“Cancer Pain 2005 Satellite Symposium
Theme: “CONTROVERSIES IN CANCER PAIN”
Location: Cairns, Australia
Venue: Hilton HotelDates: 18 - 19 August 2005
Delegates: Approximately 200
Contact Details:
Cancer Pain 2005 Symposium Managers
PO Box 128
SYDNEY NSW AUSTRALIA 2001
Ph: + 61 2 9265 0700
Fax: + 61 2 9267 5443
Email: [email protected]
Web address: http://www.tourhosts.com.au/cancerpain2005/
Supportive Care in Cancer
Sponsored by the Multinational Association of Supportive Care in Cancer (MASCC) and the International Society for Oral Oncology (ISOO)
Date Of Event: June 30 - July 2, 2005
Event Location: Geneva , Switzerland
Congress registration and Information: www.mascc.org
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Editor’s Notes
William Farr, PhD, MD (US)
Reflections and Ramblings of the Editor
Recently, as I was cleaning up my file cabinet I found a folder that contained several copies of the very first newsletter (NL) published by the International Hospice Institute and International College of Hospice/Palliative Care – the predecessor to the IAHPC. I have had the privilege to be the Editor of this newsletter since its inception; we now enter the tenth year of publication. The NL first appeared in April of 1996 literally arising from our dining room table. It was printed in a local print shop in Taos , New Mexico where we lived at the time, labeled by locals and mailed to our membership. It has changed considerably over the years from an occasional printed offering to a quarterly and finally to a digital NL that is published monthly in both e-mail and Internet formats reaching several thousand readers. Much has happened in the past nine years, but the purpose of the NL today is identical to that articulated in the first issue by Jo Magno, founder and president at the time. I fondly remember the continuous flow of phone calls and faxes that Jo and I exchanged covering all aspects of the Institute, ranging from the content of the NL to the planning of the next annual meeting. Several people have helped me with the NL through the years. In the beginning several of our members volunteered to review content and provide feedback. Among them were Craig Caldwell and Wilbur Flannery to mention only two. When Bette Michael became our Executive Director she assisted me greatly to improve the content and grammatical base of the NL by providing me hard copy replete with helpful jottings in red ink. Publication moved from Taos to Ann Arbor , Michigan where Bette was able to work with the printer, proof read the NL and finally schlep the publication to a local post office. Since it was too expensive to continue to produce a paper copy of the NL, we entered the Internet era with the untiring support and assistance of Board Member Bob Child who produced and maintained our Web site, handled the mailing lists, uploaded the NL and sent it out by e-mail to our members and colleagues. This was not an easy task. As we all became more Internet savvy, contributors changed from phone and fax to e-mail communication. I learned to use Microsoft publisher and finally was trained by Bob to upload the NL to our server without endangering the integrity of the entire Web site. After Anne Laidlow, Alou Website Design, became our webmaster and distribution guru, the entire site and format of NL took on a fresh new dimension and the number of hits per month skyrocketed. Having a professional webmaster relieved me of many clerical hours that were required to produce the finished product both in a Web and e-mail format. Consequently, I am now able to spend time assisting my wife who raises black Angus cattle here on our Georgia farm. Liliana De Lima in her role as NL coordinator screens material and provides me with much of the information that finds its way into these pages – thank you. I want to offer a special thanks to all of our regular contributors: our past and present Chairs and Executive Directors, Dr. Woodruff for his Book Reviews, Dr. Ripamonti for her Article of the Month segment, Dr. Taboada for the Ethics Page, our Board Members from around the globe who contribute Regional News, and the members who also contribute as well as volunteer as Traveling Fellows and Scholars. I am very grateful to you all! This NL is just one small attempt to highlight what is happening in the world as we, and others, “Promote Hospice and Palliative Care Worldwide.”
William Farr, PhD, MD
Newsletter Editor
Letters to the Editor
“Dear Editor:
I read with interest the personal submission of Ms Jan Jones regarding the Terri Schiavo case. While agreeing with many of her comments, I found several generalizations and statements that could confuse people and lead to wrong conclusions. I believe it would be a matter of fairness for the IAHPC to allow other people to publish different opinions as I found her views to be somehow biased. First, by stating that “Michael began battling in court over the right to remove the tube so that Terri’s death could occur naturally” (3 rd paragraph), Ms Jones is assuming that Terri’s death should be considered to be the result of natural causes. The act of removing the tube caused her death. It was an act of passive euthanasia. Terri’s general organic condition was stable from the medical point of view and she was not imminently dying otherwise. Yes, her mortality risk was high, but she was nowhere close to death. The act of tube removal preceded and caused her death, it was not a natural death such as dying from a treatment refractory pneumonia, for instance. Death happened due to the metabolic-organic complications of dehydration. A cause and effect relationship is easy to ascertain in this case. Second, if I assume she is using Terri’s case to highlight that there is general agreement among religious leaders about removing life-sustaining artificial means as ethical acceptable, I find Ms Jones is wrong in this example. The Roman Catholic Church and the late Pope John Paul II, Terri being a Catholic, have been very clear that nutrition and hydration are considered proportional (ordinary) means and as such they should be provided to people with persistent vegetative state (1). A different situation is for the imminently dying. On these cases, the Catholic Church does not have any problem with stopping even hydration and nutrition since it understands the often futile role and potential burden of its application. Third, death by starvation is very painful and there is a great deal of suffering. Children in Africa can testify of this. Again, I believe that for those very close to death, there might not be suffering associated with holding hydration and nutrition; but for any other situation, I don’t think there is clear medical evidence to state otherwise. On Terri’s case, I don’t think there is compelling evidence to state with certainty that she did not suffer as result of starvation and dehydration. Last, I believe there is room for the Health Care team members to bring their consciences and opinions into the moral dilemma surrounding these situations. As a palliative care physician who opposes both passive and active euthanasia, I believe I have the right to protect my conscience and be free to withdraw from or to act upon a situation which I am afraid would betray my work-ethics. Without getting into legalities of the situation, which might dictate a modified course of action on my part, I see my role as one providing comfort until its natural death and also ensuring this principle is protected as far as it regards to my actions.
Respectfully Submitted,
Rene Leiva M.D.;C.M.; CCFP (Care of the Elderly/Palliative Care)
Ottawa , Ontario
John Paul II. “Papal Address on Food and Water: Excerpts from the March 20 th, 2004 statement”. Ethics and Medics. June 2004. Vol. 29 No 6”
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“Dear Editor:
The goings on in the Terry Schiavo case have been broadcast far and wide by the media and have become a hot topic of discussion all over the world. In light of the article written by Ms. Jones, CEO of Alive Hospice, I would like to raise the following points for further discussion in your newsletter as they impact on all of us involved in hospice.
- What is the role of a hospice where a patient has been admitted? Do they indeed not have a role “to decide, or opine, what the right thing to do is in regards of the feeding tube?” Who will then decide this and on what basis? How do we define “comfort care”? Does it not include the obligation of the hospice to maintain her right to privacy and personal dignity? Do family members have a right to bring in TV crews and cameras, causing inconvenience to other patients and their families? How does one put across the argument to the public that “removal of artificial devices or means does not constitute euthanasia?” It is a nuanced argument that I find the majority of people do not follow. How does one clear the “misunderstanding on the part of the general public about suffering occurring from starvation or dehydration” especially as the reasons for feeding a loved one? This concept is not necessarily dictated by logic, but meets a deep emotional need of the family. With the emergence of the citizen and the nation-state, the territory that defines personal and public space is constantly being negotiated. For example, parents can no longer abuse their children claiming that what they do in the home is their concern alone. In light of this, besides the family, who are the other players we are dealing with and how do we currently see their role? How does one ensure the neutrality of the courts so that personal morality does not influence ethics? Especially in the U.S. where judges are political appointments? What does one do with a family in conflict where wishes can be distorted to suit personal agendas? Moreover, while people may document their wishes when they are well, they often reverse such decisions when they are sick and potentially terminal. How is one to handle this?
- In the Indian context, the rights of the patient are poorly understood and the family is the decision-maker on his/her behalf. Also, people are not told their prognosis. How will one handle this?
These are a few questions I have, for what ever they are worth. Perhaps you could consider widening the discussion as all of us engaged in hospice need answers.
Warm wishes,
Harmala Gupta
Director
CanSupport
New Delhi, IndiaLetters to the editor may be submitted at the following page
http://www.hospicecare.com/contact.htm
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****Thanks to all contributors to this issue.****
William Farr, PhD, MD
Newsletter Editor
www.hospicecare.com
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