International Association for Hospice and Palliative Care
Subject: IAHPC Newsroom 2005; Volume 6, No 12, December
William Farr, PhD, MD
International Association of Hospice and Palliative Care (IAHPC)
This issue of the IAHPC newsletter is now on our website at URL:
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Kathleen M. Foley, MD (USA)
By the end of this year, six of our Board members will be completing their terms, they are Nessa Coyle (USA); Paulina Taboada (Chile); KS Chan (Hong Kong); Joseph Child (USA); Irene Higginson (UK); and Janet Jones (USA). Please join us in thanking each of them for their contributions to IAHPC and their efforts in helping the organization achieve its mission. It has been an honor for us to have been able to work with these members of the Board, all extraordinary palliative care individuals and professionals.
As many of you know, we had an open call for members to nominate candidates to these positions. We received 15 nominations of excellent candidates – thank you all! New directors will be announced at the end of this month.
Remember that we are accepting applications for the three IAHPC Awards until December 31 st, they are for Individuals (the Vittorio Ventafridda Award); Institutions and Universities. The awards provide a prize of US $2,000 for each category. If you are interested in nominating an individual, institution or university, there are still some days left. Additional information on how to apply is available in our website at http://www.hospicecare.com/Awards/awardsindex.htm or go to www.hospicecare.com and click on IAHPC Programs and select Recognition Awards. The IAHPC Awards program is a great tool to recognize those who are doing things correctly around the world.
World AIDS Day was celebrated on December 1 and many activities were carried out around the globe that focused on education, increased awareness, and programs.
According to the United Nations, the data show that AIDS is increasing:
• 40.3 million people are now living with HIV worldwide (17.5 million are women)
• Close to 5 million people were newly infected with HIV in 2005
• During the course of the year, 3.1 million died of AIDS; of these, one-half million were children
• Almost 26 million people in Sub Saharan Africa are now living with HIV
At IAHPC we support the celebration of the Day and the call for governments, individuals and institutions to include palliative care as a component of care for patients with HIV/AIDS. Access to treatment including palliative care should be a priority for governments. Additional information about the UNAIDS program can be found in http://www.unaids.org
As the year ends, we are very proud of the many things we were able to accomplish through our programs and projects and of the support we provided to developing countries. We spent almost US $300,000 this year in programs and projects around the globe.
Some highlights of the programs and things we accomplished during 2005 are as follows:
• Through the Clearing House Program we sent over 4 tons of donated books and journals to more than 400 programs, libraries and hospitals in developing countries;
• We supported individuals who spent time teaching palliative care in Cuba , Kenya , India and Sudan with the IAHPC Traveling Fellowship program
• Through the Traveling Scholarship program, IAHPC paid the travel of palliative care leaders from Colombia , Guatemala , Nepal , Romania and Uruguay to attend seminars, congresses and training courses in Germany , USA , Spain and Korea . In India , IAHPC is supporting 10 students per year from all over the country to attend the Palliative Care training seminar in Amrita Institute of Medical Sciences in Kochi , Kerala.
• Through the Faculty Development Program we are now supporting palliative care faculty positions in Tanzania , Argentina and India and are in the process of approving two more in developing countries.
• The IAHPC website at www.hospicecare.com is registering almost 12,000 hits per day and almost 1,000 daily visitors. The site has hundreds of pages of information which are constantly updated by Alou Web Design. All the pages are free and are accessed by more than 1,000 readers every day from all corners of the globe.
Additional information about these and other IAHPC Programs is available in our IAHPC Programs page in our website at www.hospicecare.com
We are seeking individuals and organizations to support IAHPC. We have a very lean organization which enables us to spend most of your donated funds on programs at the grass root level. Our ability to keep helping others relies heavily on your support, so please consider donating to IAHPC. You can donate through our website or contact our office for more information.
This is our last Newsletter for 2005. It is a time to reflect on the work we have done and the plans we have for the future. Our strong commitment to supporting the development of palliative care around the world will continue to be our driving force. We wish to thank all those who make our work worthwhile - the patients and their families, the health care workers, and the volunteers who dedicate and give so much to palliative care.
We could not have been able to achieve the above without the generous support of our board of directors, our members, companies, foundations and organizations which believe in IAHPC’s mission and in our ability to have an impact in the promotion and development of palliative care.
We hope you enjoy your holidays and wish you the best for the upcoming year.
Until next month,
Kathy Foley, MD
Carla Ripamonti, MD
Sleep disturbances in palliative cancer patients attending a pain and symptom control clinic
Author(s): Sela RA, Watanabe S, Nekolaichuk CL.
The authors conducted a prospective study of cancer patients who were a minimum of 21 years old, and did not have brain metastases, psychiatric disorders, or cognitive impairments. They all attended a Palliative Care out-patient Clinic at a comprehensive Cancer Centre in Western Canada . The aims of the study were to investigate in this patient-population: 1. the frequency and severity of sleep disturbances and the degree to which patients’ communicated their problems to health care providers; 2. the association between sleep disturbances and physical/emotional symptoms such as pain, fatigue, anxiety, depression; and 3. the type of treatment used and its efficacy and tolerability as reported by the patients.
One hundred patients (mean age 60.1 years, 52 males) gave their consent to participate in the study. They received and completed the sleep questionnaire administered by a graduate student in psychology. The sleep questionnaire (10-point numerical scale) was drawn up by the authors who used items from sleep questionnaires reported in the literature with the addition of new items covering many aspects of sleep-related features and the efficacy of treatment. The Edmonton Symptom Assessment Scale ( ESAS) was used to assess the intensity of pain, fatigue, nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath.
Nineteen percent of the patients reported sleep disturbances prior to cancer diagnosis and 72% of the patients after the diagnosis of cancer. The patients reported the intensity of the symptoms ≥ 5 in the following categories: not feeling rested in the morning (72%), difficulty staying asleep (63%), difficulty falling asleep (40%), and early awakening (37%). Fifty-two per cent of the patients slept too few hours and 31% of the patients slept too many hours, while 49% of the patients had sleeping problems 5 or more nights per week. Fifty-two percent of the patients with sleeping problems of an intensity ≥ 5 reported feelings of strong anxiety and 77% of them spoke about it with their health care professionals.
Fifty-three per cent of the patients used different strategies to relieve their sleeping problems and 37% of the patients involved in the study used drugs with a moderately high efficacy.
Correlations were found between the difficulty in falling asleep and fatigue, early awakening and fatigue, and difficulty in falling asleep and anxiety.
Why I Chose this article
Despite published questionnaires to evaluate sleep disturbances, there is frequently still an underestimation, and under treatment, of this clinical problem in patients with cancer during the various stages of their disease.
This is one of the few studies conducted on this subject which reveals that sleep disturbances should be evaluated by means of simple tools in routine clinical practice
Carla Ripamonti, MD
Please visit the following link to read past Articles Of The Month:
Palliative care Research educational program in Cuba
Dr. Richard Harding
Palliative care is in its infancy in Cuba, the goal of my visit was to provide an educational program designed to provide information about the growth and development of the discipline of hospice and palliative care. The Traveling Fellowship was made possible by a grant from the International Association for Hospice and Palliative Care (IAHPC) to cover the expenses of my trip in November, 2005.
The Cuban program was convened by Dr Ivan Justo Roll who is based in the Tomas Romay Policlinic in Old Havana. The clinic serves a local population of about 30,000 Cubans with a full range of primary care including dentistry and midwifery. It is open 24 hours/ day, seven days/week, and is the home to Dr Justo Roll’s palliative care service, one of the only specialist and dedicated palliative care services in Cuba.
The teaching program was offered daily and included half days of lectures and seminars, with 2 additional afternoons spent in large hospitals. Our educational program coincided with the Cuban World Day for Hospice and Palliative Care. The course was taught with the assistance of Ms. Jennifer Kwakwa, a specialist palliative care nurse from the UK who has an academic post at Peninsula Medical School and a clinical post at the Grand Cayman Hospice Service. The aim of our combined presence was to provide an understanding of the philosophy of palliative care, along with some clinical guidance with examples and to provide a framework on which to begin to build an evidence based program. To ensure that indigenous perspectives were recognised, lectures were also given by Cuban psychologists, paediatricians and oncologists.
The Policlinic course was well attended by a group of multi-professionals including doctors, nurses, social workers, psychologists and medical students. All teaching materials were translated into Spanish prior to the commencement of the programme each day; continuous translation facilitated full participation by all those present.
Particular gravitas was attached to the lectures we delivered at the Miguel Enriquez Hospital and Enrique Cabrera Hospital. At the first hospital, the lecture was hosted by the Medical Director and Head of the Medical School and was attended by about 200 doctors and nurses. At the second hospital, the head of each clinical specialty and approximately 50 doctors and nurses attended. During the receptions for us following each lecture there was a strong and lively debate about the potential for palliative care growth in Havana.
A number of dominant issues were raised by each audience. First was the slow cultural shift in Cuba to disclose to patients a diagnosis and prognosis. There is a strong tradition of not telling a patient about a diagnosis of an incurable malignancy, and furthermore, families require that doctors do not break bad news to patients.
It was clear to us, as well as to the attendees, that palliative care cannot satisfactorily exist solely in either hospital or community, and that integration across both was necessary as they develop in parallel.
It is also clear that there is a growing recognition of the benefits of palliative care in Cuba. Cubans also recognize the need to work with their own cultural and political traditions in order to develop and apply a palliative care model in their country. For example, where resources are limited, teaching focuses on the potential for palliative care to exist outside of the traditional hospice building. Only through self determination and collaboration, when requested, can Cubans succeed in integrating palliative care across clinical settings. There is certainly a role for the international palliative care community to help where they can. Open and honest end of life communication and care can only take place once there is a cultural shift from the present. There are certainly opportunities for the international palliative care community to assist in the development of educational resources for the training nurses and medical students.
A significant development at the end of the week was a collaborative planning session to develop an evidence based program for palliative care. This will be assisted by the recent translation and validation of a Spanish Palliative Outcome Scale (POS) in Argentina, which is planned for use in Cuba.
Clearly the course generated a greater awareness and interest in palliative care provision in Cuba. While further developments can only be achieved from within the Cuban healthcare system, it is important for international palliative care to be ready and willing to respond appropriately when requested to do so. We should ensure that those who are pioneering palliative care within Cuba are included in our global efforts and that they also have access to advocacy and education resources. The Latin American Palliative Care Association may offer the greatest potential to provide such help, particularly since Cuba already offers clinical education to many students from the region. Another important development could be the successful establishment of a Cuban National Palliative Care Association.
Gayatri Palat, MD
The International Association of Hospice and Palliative Care and MD Anderson Cancer Centre, Houston, Texas sponsored me for a one-month visit to Department of Palliative care and Rehabilitation Medicine, MD Anderson Cancer Centre from 13th June to 11th July 2005. The purpose of my visit was to attend training programs on palliative care as well as undertake discussions and planning sessions on the proposed joint research and educational activities between Amrita Institute of Medical Sciences, Kochi, Kerala, India and the MD Anderson Cancer Center.
It was an opportunity for me to interact with a world renowned faculty working in the department. I was able to observe current palliative and symptom control techniques in advanced cancer. I participated in ward rounds, consults, symptom assessment, family conferencing and multidisciplinary meetings relating to symptom control in cancer patients. I went with the rehabilitation team to observe their rehabilitation work in the areas of occupational therapy, respiratory therapy and lymphoedema management. I also had the opportunity to spend two days with the hospital wound management team learning about recent advances.
The research team of the institution was very keen to discuss various aspects of possible research collaboration between our two institutions and some initial discussion was initiated on specific areas of possible research. A part of my time in the department was used to help Dr. Eduardo Bruera, write two chapters in a book, ’Principles and practice of palliative care and supportive oncology, 3rd Edition’.
Dr. Eva Rossino Duarte
My visit to Houston was a real blessing, because it was not only rich in information and life experiences, but also a just-in-time opportunity that occurred immediately before we begin our own Palliative Care unit.
Guatemala has only one Cancer Hospital (Instituto Nacional de Cancerologia - INCAN) which is a referral center for the whole country and other countries in Central America. Our doctors, nurses and general workers perform a great and heroic job with cancer patients despite large economic and resource limitations. There is, however, a gap in attention to the total suffering of patients and families as they cope with a diagnosis of cancer, its treatment and the possibility of death.
One change brings on another, just like the stone that is thrown intothe water. The observation of the model at MD Anderson and the warmth of Houston Hospice which I was able to get to know (thanks to my friend, Dr. Sue Krauter) will be a great influence on me during my initial contact with the palliative care patients at INCAN. I was impressed not only by the hospital, its superior high tech systems and the kindness of the people, but by the humanity and brightness of the people inside both institutions who exercise and model the principles of palliative medicine that we read about in books and manuals.
Dr. Eduardo Bruera has set a very high standard of quality for the practice of palliative care. It is based on a humble principle that “hard work and and excellence of care to each and every patient results in the best quality of life possible until their last day.” I’m glad that I can now begin my work here in Guatemala, despite our limitations, to make palliative care a reality for our patients and to develop a supportive culture among our doctors, nurses and other workers at INCAN.
How is all of this going to help me and my country in the development of an effective palliative care program? I observed the highest standards at MD Anderson and the Houston Hospice, but I also saw workings of a life philosophy in every person that I met. They were all models of compassion, esteem and empathy for each patient that goes far beyond any instruction, class, book or diploma one can obtain. This experience has given me what I could not have learned by reading or investigating. The best lesson learned came from the dedication of the people who devote time with patients, who look directly into their eyes, who work hard at keeping patients comfortable by controlling their symptoms, giving family support and keeping their dignity during the process of a chronic and active disease. I think palliative care will be promoted in my country with an attitude of service and humbleness while giving to others from the abundance that we have received.
Thanks again to the IAHPC for helping me have this great experience! I’ll dedicate my time to the development of a palliative care program with the same high standards of quality and attention that I observed in Houston.
Brazil is the largest country in South America with an area of 8.514.215, 3 km², with its capital at Brasilia. It has 170 million inhabitants with a huge geographic and socioeconomic diversity divided into 5 regions, 26 states and 1 Federal District all of them speaking the same language - Portuguese. The World Hospice and Palliative Care Day activities were carried out in some regions of this continental country that lacks an active national program in palliative care. Three of the16 activities in three regions were supported by the kind generosity of International Association for Hospice and Palliative Care (IAHPC). All activities were dedicated to raise awareness and understanding of the needs - medical, social, practical, spiritual - of people living with a terminal diagnosis and their families.
In the southeast, in the city of Sao Paulo, activities focused on general palliative care for the community and were conducted in the largest urban school and cancer hospital in Brazil. It started with a brilliant open lecture to the community, titled “Who needs palliative care?” In the city of Goiania, in the central region of Brazil, a lecture was given for health professionals regarding the importance of palliative care. Finally, in the Northwest region of Brazil, in the city of Fortaleza, a Women’s Network Volunteer Training Program was conducted which had a positive impact on the local media and politicians.
October 8th was a great and significant day in the history of palliative care in Brazil, and its effects are still echoing in the media, medical magazines, journals, and newspapers as well. We are proud to have contributed to a raising of the awareness of the need for hospice and palliative care across the world. We wish to thank IAHPC for the funds to help us accomplish this. This day, definitively changed the palliative care view in this huge continental country. There remains much work to be done in ensuring adequate professional training and access to palliative care in Brazil.
Císio Brandao, MD, Medical Director
A Report from CanSupport on the Events it held on Oct. 8, 2005, ‘World Hospice & Palliative Care Day’
The day began with a seminar, supported by the Ministry of Health & Family Welfare, Government of India, and the WHO, at the British Council Auditorium. After a brief but warm welcome from Mr. Les Dangerfield, Deputy Director of the British Council, the Chief Post Master General, Delhi Postal Circle, Mr. S. Samant released a cover especially designed by CanSupport for the occasion. Shri Yoganand Shastri, Minister of Health, Government of the NCT of Delhi, the chief guest, also released a souvenir-journal prepared by CanSupport which carried an encouraging message from the President of India, Dr. APJ Abdul Kalam. The highlight of the morning was the personal testimony of Mrs. Mohna Venugopalan, a patient being looked after by the CanSupport home care team, who spoke movingly about the difference the home care team had made in her life and that of her husband. She made a stirring plea for policy makers to make palliative care a part of the country’s health agenda and support the development of palliative care services nation wide.
The seminar also featured the screening of a 15 minute film on CanSupport, a panel discussion on palliative care as well as an interactive session with NGOs working in the field of chronic care. Experiences were shared and lessons learned. The suitability of providing care at home in the Indian setting was emphasized as was the need to reach out and offer support to patients and their families through telephone help lines. Fifty-five persons attended the seminar. Of this number, 15 represented institutions and organisations.
In the evening it was time for voices to be raised in unison and harmony as part of the global ‘Voices for Hospices’ concert. CanSupport has participated in this event three previous times. This year’s concert was dedicated to life and it’s many complexities in recognition of the fact that those who receive palliative care are grappling with physical, psychological, social and spiritual aspects of existence. The well known Urdu poet Iqbal’s immortal poem, ‘Zindagi’(‘Life’) set the mood for the evening. After introducing the event, Harmala Gupta, President of CanSupport invited Mr. Fareedu Jaffrey, the brother of a young patient who the home care team had looked after, to come on stage and light a candle. Following this the performance began. Saeed Naqvi, the noted journalist, recited a few choice selections from Urdu poetry in his own inimitable style while Zila Khan, a singer who carries on an illustrious family tradition, sang with great feeling. Both performances were greatly appreciated by a packed house of approximately 500 persons.
It was also an opportunity for CanSupport volunteers to showcase the work CanSupport does and to raise money by selling cards, diaries and T-shirts specially made for the occasion. Their personal warmth and dedication won many a heart that evening as a memorable day came to a close.
For further information contact:
The International Observatory in End of Life Care is conducting a survey to evaluate the World Hospice and Palliative Care Day. The questionnaires are available in different languages and may be filed online through the following links. Please take the time to fill out the questionnaires.
WHPCD evaluation Questionnaire web links:
Dr. Woodruff, MD
ENDING LIFE: Ethics and the Way We Die
Margaret Pabst Battin
Oxford University Press, 2005
A Dutchman came to see me last week. He was in his 80s, but mentally very on the ball. Towards the end of our meeting, he said, ‘I want you to know that I am a very strong proponent of euthanasia.’ This, it turned out, evolved from watching his father die slowly over a ten-year period in a nursing home, blind and deaf. It sounded awful to me, but I avoided asking how many courses of antibiotics and other life-prolonging measures had been administered during that time. When I suggested that modern palliative care might go a long way to preventing the pain and psychosocial suffering associated with a terminal illness, he was unmoved. He was both a fervent autonomist and scared of dying the way his father had.
This book is about the way philosopher Professor Margaret Pabst Battin thinks we should now move on from the currently polarized debate about physician assisted-dying, and along the way she presents a lot of interesting information about the way people die. She starts with the present for-and-against debate, exploring some of the issues in depth. The middle section of the book describes the influences of historical, religious and cultural concerns, touching on a wide variety of topics from serpent-handling to suicide bombing. The final section is titled ‘Dilemmas about Dying in a Global Future’ and deals with issues related to increased life expectancy, genetic prognostication, and ‘NuTech’ methods for committing suicide, before coming to the predictable conclusion that physician-assisted dying will come to be accepted as our culture changes.
In her introduction, Battin urged me not to address the issues surrounding physician-assisted dying in ‘all or nothing’ terms. But I failed to reach the required standard. I felt that her description of the Dutch practices was somewhat selective. I was encouraged to pass over the ‘notorious 1000’ patients who are euthanised each year without current request or consent. The clinical facts, as published by the Dutch authorities, is that the true number is a multiple of this when you include deaths related to treatment of pain and symptoms given with the intention of hastening death and deaths related to withholding or withdrawal of treatment done with the intention of hastening death, many of whom were euthanised without request or consent. A more detailed appraisal of Dutch practices can be found in John Keown’s Euthanasia, Ethics and Public Policy (Cambridge, 2002) and The Case Against Assisted Suicide edited by Foley and Hendin (Johns Hopkins, 2002), but I couldn’t find reference to either volume. And just to set the record straight, the Australian data on physician-assisted dying published by Kuhse, which is quoted, was based on unethical and ambiguous questions and was discredited years ago.
On the other side is the possession of personal autonomy. I am somewhat bemused that this is such an important and central tenet in the physician-assisted dying debate when we all relinquish bits of personal autonomy all the time, every day, because we live in a society. And what about the data from Oregon , where it is legal to exert your personal autonomy and receive physician-assisted suicide? During the four-year period 1998-2001, there were about 20,000 deaths from cancer in Oregon . Now if 60% of Oregonians voted in favour of legalizing physician-assisted suicide that might lead to as many as 12,000 requests. But during that period there were only 70 deaths by physician-assisted suicide of patients with cancer – which is one-third of one percent. There are more complex issues at work.
And just a word about suicide bombing. Forgetting the historical context from centuries ago, should we really “see these actions as defensible cases of martyrdom” in the twenty-first century? This might be appropriate analytical thinking for philosophy departments, but I wonder whether a lot of people down here on earth would agree.
This book is well-written and certainly thought-provoking. I would not hesitate to recommend it to anyone with an interest in the debate about physician-assisted dying or the historical and cultural origins of the way people die. I learned a lot of interesting things along the way and was entertained by Battin’s fictional essays. But would something as simple as improving pain control lead to fewer and fewer requests for physician-assisted dying? My Dutchman expects perfect pain control and euthanasia. And was I swayed towards legalizing physician-assisted dying? Not a bit.
Regional News of
A New Hospice in Vellore .
In January, the Christian Medical College (CMC) and Snehadeepam (A local Catholic Charity) agreed to cooperate in partnership to build a new Hospice on land owned by the Catholic Diocese on the outskirts of Vellore . The Hospice, which will be owned, managed and run by Snehadeepam and will have a first floor that will house CMC’s Palliative Care Unit. CMC sees this as an opportunity to get Palliative Care into better accommodations and to be able to extend their outreach services to the terminally ill patients in Vellore.
From this unit, Dr.Reena George and her medicl and pastoral team will be able to visit hundreds of families and provide to them support, training and medical attention. Home based support is normally the best way to help terminally ill patients especially where the family is capable and willing to provide assistance once trained. Sadly, some terminally ill patients become outcasts in the family and it is Reena’s team’s job to convince them that the illness is not due to a curse or bad spirits.
I spent one afternoon visiting patients in their homes and was hugely impressed by the quiet but professional way in which support was given. One woman had made an income by rolling small Indian cigarettes (beedis). However she had developed a throat cancer, which Reena believed was due to inhaling tobacco dust since she did not smoke. The family was able to help and pain relief was offered by the medical team through a regular programme of house visits.
Another young boy called Ajju with liver cancer had received radiotherapy, but the cancer was still very active. There was the prospect of more radiotherapy which might give Ajju another couple of months, but he had decided not to have this as the treatment since it had made him feel so unwell. He was at home with his two brothers and his parents and had created some great paintings. The home visits really helped, and the tender sympathetic support he received was inspiring. Unfortunately, the situation was hopeless and Ajju died in February. It would have been better if he could have gone to the hospice and received support there in his last days.
Individual donors have already pledged £30,000 to establishing the Palliative Care unit at the new Hospice. Friends of Vellore will look at opportunities of supporting this worthwhile service.Friends of Vellore, UK works in close partnership with the Christian Medical College in Vellore, Tamil Nadu to encourage the provision of high quality medical service at the Hospital and to facilitate access to it by the widest spectrum of the local population. The Charity, which has been operating for over 50 years, is particularly concerned to promote initiatives aimed at the disadvantaged and deprived and to ensure that everyone can receive appropriate treatment regardless of their ability to pay…..
Reprinted here with the permission of Mr Richard Smith, Director, Friends of Vellore , Flempton Hall, Bury Road , Flempton, Bury St. Edmunds, Suffolk , IP28 http://fovuk.tripod.com/home.html
Palliative Care Service at the Children Cancer Hospital , Karachi , Pakistan
Dr Shamvil Ashraf
About the Children Cancer Hospital
Children Cancer Hospital is the premier facility exclusively dedicated to the care of children suffering with cancer regardless of their ability to pay. This is a project of Children Cancer Foundation, a registered Non-Governmental Organization established in December 1999 by a group of medical professionals, social workers and parents of children suffering with cancer. The unit has out patient clinics, 8 daycare and 14 in-patient beds. The unit provides comprehensive cancer care to all children on active protocol.
For more information please visit our website www.ccfpakistan.com.pk
Burden of Palliative Care at Our Hospital At present we see more than 200 newly diagnosed children annually. About 150 continue treatment at our center. About 10% of these need palliative care from the beginning because of the advanced nature of the disease and the constraint of resources. The available resources are first utilized for the more curable cancers. Around 25% of patients relapse during and after treatment. Most of these again are not offered a second treatment because of the lack of resources. With this background data, it is estimated that at a given time we have 35 to 50 children on palliative care.
Once a child is on palliative care most of the parents look for alternative/ complimentary homeopathic or spiritual treatments, but they do come to us for blood tests, transfusion and pain management. Some parents continue treatment with us until the death of the child.
We provide pain medication and supportive treatment to these children, but we do not have:
• Specialized palliative care teams of doctors and nurses
What We Want To Do
We want to start a palliative care program at our center with a 24 bed unit. We would initially like to treat these children at our center with a specialized team of doctors, nurses, psychologist and social workers. During the next phase, we would like to provide home care within Karachi with the help of volunteers and social workers.
What Do We Need?
• Morphine availability
What Support Do We Need?
• Education and training of doctors and nurses
Al-Taj for Health and Heritage is a grass-root organization located in the city of Arraba , Galilee , Israel . It is a registered not-for profit, non-governmental organization founded by multidisciplinary volunteers. Its purpose is to promote people's health and improve the quality of life of diabetic patients through an education center, and it also provides palliative care to cancer patients by a home hospice care team.
Cancer Project Objectives:
1. To ensure public awareness of cancer
Project Goals and Design:
1. To provide training in prevention, early detection, signs and symptoms and the importance of screening.
Al-Taj (the Crown) Home Hospice
There is an almost 100% increase in cancer diseases in the Arab sector since 1970. The most frequent types of cancers are the lung in men (high rate of heavy smokers) and breast cancer in women (heredity).
We aim to improve the quality of life for the patients and families by:
• Relieving pain and control symptoms
Cancer in Arabs in Israel :
• Cancer is the second leading cause of death in the Arab sector after heart disease.
Our unique status:
1. Palestinian citizens living in Israel are 20% of Israel ’s Population. They lack palliative care services resulting in unnecessary suffering due to pain and symptoms.
We are seeking support to help us improve our peoples health and the quality of life. Tax-exempt 501 (C) (3): Healing Across the Divides Foundation, USA.
Al-Taj for Health and Heritage POB 85, Arraba 24945 , Israel [email protected]
CARE … The Palliative Medicine Newsletter’
CARE, is a monthly Palliative Medicine Newsletter from the Academic Club, Palliative Care Division, Regional Cancer Centre, Thiruvananthapuram, Kerala, India . The online subscription is absolutely FREE!
The newsletter is aimed at providing updates on palliative medicine to palliative care professionals and includes an overview of the basics of palliative care for beginners. It also encourages discussion on several difficult issues in palliative care and research.
Currently there are four sections for the newsletter: Topic of the Month, Palliative Pearl, Medi Quest and News & Events. In “Topic of the Month”, a topic of relevance to palliative medicine will be dealt with in detail to cover some of the basics and available updates on that particular topic. Palliative Pearl will provide a few important tips / facts that could be of practical benefit to the day-to-day palliative care practice. Each issue of Medi quest will have a question to stimulate the readers to continue learning in palliative care. In subsequent issues, we will have a small discussion about the answers and the names of the winners. News and Events will provide the information on recent events / developments in the palliative care arena. More useful sections and updates are expected soon to make the newsletter even better.
For a free subscription to CARE please send your name, designation, name of the organization and e-mail address to [email protected]
You are also welcome to contribute to any section in the newsletter, which would be gratefully acknowledged. For details and any assistance, please contact me at [email protected].
The Academic Club is a group of persons interested in improving the palliative care services in our region. Academic Club conducts CMEs, training programs, workshops etc on palliative medicine on a monthly basis at the Palliative Care Division, Regional Cancer Centre, Thiruvananthapuram, Kerala , India .
Dr Prasanth C V, Convener,
We are glad to announce that IAHPC will be participating in the next UICC World Cancer Congress July 8-12, 2006 in Washington DC. IAHPC will organize a workshop and a full session on Global Strategies in Palliative Care in Cancer for this meeting.
Conference organizers invite authors to submit abstracts for presentation in all areas related to cancer control and organizational development, or tobacco and its impact on health and the economic and socio-political environment.
Submitters are encouraged to develop presentations built around the theme of the individual conference. Abstracts can be submitted for one 15-minute oral presentation, for a 90-minute session with several speakers, or for a poster.
To submit an abstract, please use the following links:
For UICC World Cancer Congress
For 13th World Conference on Tobacco OR Health
Deadline for submission of abstracts is December 15, 2005.
We invite all our subscribers to submit abstracts related to Palliative Care for Cancer patients and take this opportunity to have an impact in the promotion of palliative care through UICC, the global cancer organization.
UICC will be offering Scholarships to individuals from developing countries. Deadline for application for grants has been extended until November 30th, 2005. Scholarships and fellowships will be awarded to individuals who meet specific criteria. Organizers may also award a very limited number of extended scholarships for individuals to attend both the UICC World Cancer Congress 2006 and the 13th World Conference on Tobacco OR Health to further develop linkages between the cancer and tobacco control communities. Applicants are strongly encouraged to apply online Applications are available in:
We hope you consider submitting an abstract and participating in this important meeting.
Kathy Foley, MD
Liliana De Lima, MHA
The journal Palliative Medicine continues the IAHPC Member Discount
We are pleased to continue to offer the International Association for Hospice and Palliative Care a privileged rate to Palliative Medicine journal.
RE: Discounted rate to Palliative Medicine journal.
As part of your membership to International Association for Hospice and Palliative Care, you are entitled to a privileged rate to Palliative Medicine journal.
In 2006, the rates are as follows:
(UK/EU) Â£135.00 (Normally Â£170.00)
To take advantage of this offer, or to request a sample copies the journal, please visit www.palliativemedjournal.com
We have launched a new course on the www.CancerNursing.org website 'Cancer Care for Children and Young People'
The course is free-of-charge to all, and can be undertaken at a time, pace and place of the learner's choice.
We now have the following courses available:
- Cancer Care for Children and Young People
The 'Cancer Care for Children and Young People' course has been written by the Paediatric Oncology Nurse Education group of the UK 's Royal College of Nursing and has been designed as an introduction to the speciality of caring for children and adolescents with cancer. The course provides an overview of many different aspects of caring for young people with cancer - physical, emotional and psychological.
We are also extremely grateful to the following childhood cancer experts for reviewing the course:
Dr. Faith Gibson, Lecturer in Children's Nursing Research at Great Ormond Street Hospital NHS Trust, London, United Kingdom.
Professor Barbara Love, School of Nursing, McMaster University, Ontario, Canada .
Louise Soanes, Senior Sister, Children's Cancer Unit, Royal Marsden Hospital, Surrey, United Kingdom.
Learners can enroll in the course at the CancerNursing.org site
I would also like to thank you for your continued support of CancerNursing.org. We have a number of courses currently under development and will launch further new courses before the end of this year.
If you have any queries or need any further information, please do not hesitate to contact me.
Very best wishes
From the International Observatory on End of Life Care
The Observatory has today added Turkey to its list of reports for the Middle East Cancer Consortium (MECC).
Select the link below for further information.
Visit www.observatory-publications.net to view information on our new book “A Bit of Heaven for the Few? An oral history of the modern hospice movement in the United Kingdom ” from our own non-profit making publishing arm - Observatory Publications.
The International Psycho-Oncology Society announces the 2006 Psychosocial Academy , scheduled for 16-17 October 2006 at the University of Ferrara in Ferrara, Italy, and the 8th World Congress of Psycho-Oncology, scheduled for 18-21 October 2006 at the Russott Hotel Conference Centre in Venice, Italy. The theme of the 8th Word Congress of Psycho-Oncology, "Multidisciplinary Psychosocial Oncology: Dialogue and Interaction," underlines the need for scientific societies, health care agencies and academic institutions, to work together, share and integrate their knowledge towards a common language and accepted standards in the comprehensive care of cancer patients, their families and caregivers. Abstracts are now being accepted for the Congress. Details regarding abstract submission, as well as regarding the Academy and Congress themselves, are available on the conference website!
Jen Alluisi M.A.Ed.
IAHPC Board Service – It has been an incredible privilege to have served on the Board of IAHPC and support the development of hospice and palliative care around the world. It has struck me each time I’ve met with or emailed my colleagues around the world how similar our issues and concerns are in serving our patients and families and yet how dissimilar we are in resource availability. I appreciate all of my colleagues for their passion for our work and their persistence in making a difference. Although my service on the board is coming to a close, the work we must do to ensure that every person on this earth has access to appropriate hospice and palliative care is ongoing and I commit myself to continuing to support IAHPC with information sharing via the newsletter or website and with my dollars as I am able. Thank you for allowing me the opportunity!
Janet L. Jones, B.S., R.N., FAAMA
Anne Laidlaw - IAHPC Webmaster
Welcome to the Webmaster's Corner!
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Featured Section - Ethical Issues in Palliative Care
Sorry For The Mess!
Please excuse the mess while we are redesigning the entire hospicecare.com website! It is a large undertaking to complete this project on a live website. There may be very short times (5-10 minutes) where the site will be unavailable. We thank you for your patience while we clean house.
We are very excited to be adding new features & departments to the site.
Coming Events! Please visit our Future Events section there are many events, meetings & seminars planned for 2006.
One to One for Hospice and Palliative Care
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Until next month!
William Farr, PhD, MD
As we come to the end of another year of publishing the IAHPC Newsletter, I am humbled by the tremendous amount of love and creative energy that hospice and palliative care professionals have shared with us through their writings in the pages of this newsletter. We have learned a great deal from you all. I want to express my sincere thanks for your sharing your experiences and for the hard work you are all doing!
We have heard about many successes experienced by our colleagues who achieve much with very limited resources and under incredible circumstances. We recognize this hardship and support your work. I am confident that there is a bright future ahead, but we must not forget that there is much to be done before we can rest.
May the year ahead be filled with peace, progress, understanding and continued successes!
William Farr, PhD, MD
Many thanks indeed for the copy of the Oxford Textbook of Palliative Medicine and other publications you sent as part of the IAHPC Clearing House Program, We are delighted to receive them and we will make sure that the material is readily available to our students and academic and clinical staff.
The Al-Taj Hospice team would like to thank you for the grateful donation of "Oxford Textbook of Palliative Medicine". This donation will make a great difference in quality of the cancer patient's care.
On behalf of our small and poor Palestinian community we would like to send our regards to IAHPC staff for their kind work.
God bless you and have a great day.
Al-Taj for Health and Heritage
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© 2005 IAHPC Press