International Association for Hospice and Palliative Care Subject: IAHPC Newsroom Dear Members and Colleagues: 1. Message from the Chair and Executive Director Eduardo Bruera, MD (USA) Second, we are glad to announce that our IAHPC Fact Sheets are now available in Portuguese, thanks to the effort and commitment from our friends of AMARA Project in Portugal. We are especially very grateful with Miguel Borges and the rest of the team for their commitment in making this happen. The Fact Sheets are a wonderful resource and they are currently being updated by a Board committee. We hope that in the near future, they will be available in other languages as well. The example set by the group from AMARA will hopefully start a trend with other colleagues and friends of IAHPC in the World. The Fact Sheets are available for viewing in http://www.hospicecare.com/FactSheets/factsheets.htm Third, we are excited to announce that the IAHPC Publication “Palliative Care in the Developing World: Principles
and Practice” edited by Eduardo Bruera, Liliana De Lima, Roberto Wenk and William Farr, is now ready for sale and distribution. As many of you already know, this publication describes
conditions and diseases common in the developing world, such as rabies, malaria, TB, AIDS, Cancer and others. In addition, the first part of the book addresses socio economic aspects of care in the
developing world, as well as spiritual and ethical problems. The book is composed of 21 chapters written by leading authors from around the world. It is for sale through the IAHPC
Website at a cost of $35.00 for developed countries and $21.00 for developing countries, plus $4.00 for shipping and handling. We hope you will buy a copy and use this resource! From September 19th to the 23rd, we will be in Montreal, at the 15th International Congress on Care of the Terminally Ill. The meeting in Montreal is a very important event for IAHPC. We not only celebrate a Board meeting, but we also hold our General Members Meeting, as well as a Workshop entitled “Palliative Care in Developing Countries: Challenges and Resources”. This year we will have Drs. Daniela Mosoiu from Romania and Ednin Hamzah from Malaysia as the IAHPC Traveling Scholars to this meeting. Both will give a presentation during our workshop about their programs and the challenges they face in the provision of palliative care in their countries. If you plan to be in Montreal, please remember to attend this interesting workshop and stop by our booth # 201 to say hello. We will both be there as well as Ana Restrepo, our manager of member services and several members of our Board. Many of our members are interested in spending time teaching in a host program or institution as part of our Traveling Fellowship Program and have asked how they can help. As part of our service we have renewed a form in our website which contains a listing of those willing to spend time teaching abroad. If you would like to spend time teaching palliative care in a developing country, we invite you to submit your name and contact information in http://www.hospicecare.com/Directories/people.htm We are sad to inform the palliative and hospice care community that Dr Elizabeth Kübler-Ross died on August 25th, 2004 in Scottsdale, Arizona. Dr Kübler-Ross was a pioneer in the treatment of dying patients and one of the first to bring the subject into mainstream medicine. We have created a Memorial as a tribute to Dr Kübler-Ross in our website and invite you to write something or read the entries in our In Memoriam page in http://www.hospicecare.com/memoriam/mem_main.htm
Many thanks to those individuals who recently joined as members of the organization. As many of you know, we are offering a free copy of the MD Anderson Palliative Care Handbook by Drs Elsayem, Driver and Bruera to all those who join IAHPC and help us promote palliative care around the world. We will start sending out the copies of the book in a few days, once we finish updating the membership database. If you are not a member of IAHPC yet, we invite you to take advantage of this great opportunity and join this wonderful organization. Membership enrollment can be done online in http://www.hospicecare.com/join.htm The International Observatory in the End of Life Care has recently published an interesting interview of Dr. Anne Merriman, from Hospice Africa, Uganda, by Professor David Clark. We invite you to listen to this interesting interview and of the wonderful work that Dr Merriman continues to do in Africa. The interview can be read and heard in http://www.eolc-observatory.net/ One last announcement: the Latin American Palliative Care Association (ALCP) has launched its website at www.cuidadospaliativos.org We invite our colleagues and friends from Latin America to browse this new site, which contains an international directory of programs, news and other useful information. Until next month, Carla Ripamonti, MD (Italy) “Do not tell”: what factors affect relatives’ attitudes to honest disclosure of diagnosis to cancer patients? Author(s): Ozdogan M, Samur M, Sat Bozcuk HS, Coban E, Artac M, Savas B et al. Abstract: Supportive Care Cancer 2004; 12: 497-502 Tell or do not tell the truth to patients in the case of a life-threatening illness such as cancer? This seems a question which has been widely discussed and solved from various points of view: medical, ethical, juridical. The authors of this article reported however, that in some Eastern countries, as well as in Turkey, disclosure of cancer diagnosis is not communicated directly to the patient, but to his/her relatives. Among the difficulties regarding effective communication between physicians and patients, is the obstacle posed by many of the patients’ relatives who do not agree to discloser of the truth about the diagnosis to a patient who has cancer. Ozdogan and colleagues evaluated relatives’ attitudes in Turkey regarding informing cancer patients about their diagnosis and the possible associated factors. Relatives of 150 patients with a recent cancer diagnosis were interviewed by means of a questionnaire. 66% of the relatives did not want the diagnosis to be disclosed (61% of them were males and 76% had a low to medium income), most of them (57.3%) feared that the patient would become depressed and 29.3% thought the patient would prefer not to know; the remaining relatives had no reasons. 51% of the relatives interviewed lived with the patient. No association was found between the relatives’ “do not tell” attitude and their age, education, socioeconomic status and other demographic characteristics. In the univariate analysis, the relatives’ attitude in the “do not tell” group was associated with male gender of the patient (p=0.032), a diagnosis of a non-breast cancer (p=0.000), the presence of advanced disease (p=0.051), no previous request by the patient for diagnosis communication (p =0.021), relative’s religious belief (p= 0.058) and his/her scarce knowledge regarding cancer in general (p =0.021). In a multivariate analysis, relatives of non-breast cancer patients, or relatives who had insufficient general knowledge about cancer, opposed disclosure in a significant way. The authors justify this data maintaining that woman with breast cancer would not accept to undergo mutilating surgery such as mastectomy in the absence of an illness which could be fatal. Nonetheless, it is necessary to consider that with breast cancer - compared to gynecological, gastrointestinal cancer and
that of the lungs - there are more chances of it being overcome from the oncologic point of view, as well as it having a more favorable prognosis. The fact that patients never voiced a specific request regarding receiving accurate information about their diagnosis and prognosis is not a valid reason for withholding the diagnosis from them. This same excuse is used by many physicians as well. Healthy patients when queried on this issue wish to be informed about their health. How great is the patient’s wish to be informed underestimated? To what degree is the patient uncomfortable with the
persons around him? Poor communication may cause false communication among everyone: the physician, the patient and the family. Why I chose this article Everyone maintains that communication between the physician and patient is of utmost importance in the care relationship. The time spent with patients, a paternalistic attitude by some physicians and the degree of communication skill are all important variables to the outcome. Nevertheless, this study reveals what I personally have observed on a daily basis: patient communication is often hindered by the patient’s relatives. Therefore, as our Turkish colleagues deduced, improved communication with patients results when there is “healthy communication with the relatives,” and there is the offer of providing psychological support for them should they so wish. The alternative to not telling risks that no one knows anything, including the patient. Regards, 3. Book Reviews TRANSITIONS IN DYING AND BEREAVEMENT. Moira Cairns, Mahoney Thompson, Wendy Wainwright (Eds) This book is about counseling in palliative and bereavement care. It is structured to mirror the steps or transitions that occur as patients and families follow the journey from diagnosis to death and through bereavement. Each transition or phase is discussed in a separate chapter. Each includes a pertinent case study, identification of the significant psychosocial issues associated with the transition, followed by a list of questions that could be used for assessment and a description of possible interventions. Between each of the main ten chapters are shorter chapters called “Perspective”, which describe topics that have broad application across all or most of the transitions. These include psychosocial assessment, support for the team, alternative therapies, working with emotions and cultural competency. (For a full list, see the Table of Contents in the review in the Bookshop at www.hospicecare.com.) I think this is an excellent book. It is clinically very practical and the considerable experience of the contributors shines through. It is well setout and organized. It is clearly written, with a minimum of psychosocial “mumbo-jumbo”. I thought there might have been more emphasis on giving more psychosocial care before death as a means of reducing problems in bereavement, and the use of formal Advance Care Planning as a means of achieving this. But as it stands, the book will be a valuable resource for all who work in hospice and palliative care, enabling and empowering them to further explore the psychosocial dimensions of the care we provide. The book is further enhanced by twenty one-page insights written by people who work at the Victoria Hospice, and by numerous quotations, one of which I lifted to share with you. “Hope is the thing with feathers PRURITUS IN ADVANCED DISEASE Zbigniew Zylicz, Robert Twycross and E. Anthony Jones (Eds) This is a clear and concise account of the current state of our knowledge (and lack of it) about pruritus. The opening chapters describe the pathophysiology (pruritoceptic, neuropathic, neurogenic, psychogenic, idiopathic), neurophysiology and clinical assessment. The following chapters describe the clinical features, pathogenesis and treatment options for the pruritus associated with various conditions including cholestasis, uremia, opioid therapy, neuropathy and malignant disease. The final chapters summarize the topical and systemic therapy of the various types of pruritus. Severe pruritus is relatively uncommon in clinical practice, but can be a most distressing complaint for the patient. This little book is full of information that will improve the way we think about this complex symptom and will be a valuable resource when confronted by a patient with difficult pruritus. Robert Twycross laments that pruritus is likely to remain a Cinderella symptom, relatively neglected. Well, this book certainly puts the girl in the spotlight. OPIOIDS AND PAIN RELIEF: A HISTORICAL PERSPECTIVE Marcia L. Meldrum (Ed) This is a fascinating collection of essays outlining the history of the use of opioids for pain relief. The authors are a mix of clinicians, laboratory scientists, historians and sociologists, providing a broad range of perspectives. Although opioids have been used for thousands of years, it is only recently that we have learned a little about how they should be used to treat pain. Several of the essays describe the prolonged (and sometimes heated) debates that occurred within the profession only forty years ago, until the facts we now take for granted emerged, principally due to the work of Cicely Saunders: that morphine is effective given orally; that morphine works by relieving the pain, not just by causing indifference to it; and that morphine given to patients with advanced cancer and pain is not associated with psychological dependence or significant tolerance. I found reading about the recent evolution of our knowledge about the use of opioids to relieve pain both educational and enjoyable. The shadow cast by the problems of drug diversion and addiction are apparent in a number of the essays. But, examined in a historical perspective, they are not new. Caroline Acker, the leading historian of addiction science, argues convincingly that an examination of history would have revealed “ample precedents” that OxyContin would be misused. Informative and enjoyable. HOSPICE CARE FOR CHILDREN Second Edition Ann Armstrong-Dailey and Sarah Sawbuck (Eds) This is a comprehensive treatise on all aspects of pediatric palliative care. The first section deals with clinical management issues, including children¹s age-related understanding of death, pain and symptom management, psychological issues, and the management of children with HIV/AIDS The second part is about the psychological and spiritual problems experienced by families during a child¹s terminal illness and in bereavement. There is also a chapter on support for professional caregivers. The third part explores different models of pediatric palliative care, including inpatient care and how programs designed primarily for adults can be adapted to meet the needs of dying children and their families. Essential reading for anyone involved in pediatric palliative care. WHEN CHILDREN DIE. Improving Palliative and End-of-Life Care for Children and their Families Institute of Medicine of the National Academies. Marilyn J. Field and Richard E. Behrman (Eds) This is a most impressive report from the Institute of Medicine’s (IOM) committee on palliative and end-of-life care for children and their families. It provides a comprehensive review of palliative, end-of-life, and bereavement care for children with fatal or potentially fatal conditions and their families. In some regards, the palliative care needs of pediatric patients are very similar to those of adult patients; in others, they are quite different - patients and their families may have to travel long distances to receive expert care, the physiological resilience of children makes prognostication and decisions about appropriate therapy more difficult, and goal-setting and advanced care planning is done with the parents rather than the patient. The report provides a list of recommendations for the provision of comprehensive care that is child- and family-centered. The need for collaboration within and between institutions and agencies involved in patient care, the need for educational programs and resources for professionals not accustomed to dealing with children with fatal conditions, and the need for all care to be culturally appropriate all receive appropriate emphasis. The need to educate all professionals who care for children so that they have basic competence in palliative, end-of-life and bereavement care is stressed. There is a chapter discussing the need to restructure hospice benefits for children that addresses the situation in the USA, but all of the other material is applicable to any developed country. Two hundred pages of background material covering prognostication scores, pediatric quality of life, cultural issues, bereavement experiences, education in pediatric palliative care, and the New York Demonstration Project are not included in the book but are available at www.nap.edu/catalog/10390.html. This is essential reading for anyone involved in pediatric palliative care. Even if you don¹t deal with children, this book contains a wealth of information applicable to all palliative care that will make you want to provide better and more appropriate care for your patients, whatever their ages. A HOUSE CALLED HELEN. The Development of Hospice Care for Children 2nd Edition Jacqueline Worswick This book tells the story of the first hospice for children, which opened in Oxford in 1982. It starts with the tragic illness of Helen Worswick, which serves to illustrate why paediatric hospices are so necessary if we are to meet the needs of both the patients and their families. The description of the operation of the hospice over its first ten years further underlines the role of paediatric hospices in meeting these needs. This second edition has an additional chapter, “Into the New Millennium”, which describes the continuing development of paediatric palliative care. Will be of interest to anyone involved in paediatric palliative care. Roger Woodruff 4. IAHPC Travelling Fellowship Reports IAHPC TRAVELLING FELLOWSHIP REPORT TO GHANA MAY 2004 Palliative care is a relatively new specialty and still unheard of in many parts of the world especially Africa. In Uganda
the modern aspects of palliative care became a reality in 1993 at the time when Hospice Africa Uganda was born.
The Cancer Society of Ghana is spearheading the initiation of Palliative Care in Ghana for both cancer and AIDS patients. The society arranged and organized for an introductory palliative care course in an attempt to identify those that could be trained as trainers. The society contacted St. Helena Hospice, Colchester UK, as well as Hospice Africa Uganda to help arrange and run this course. The course was arranged in such a way that it is based on what is achievable and practical in an African setting. This African experience was to be provided by Hospice Africa Uganda. Funding was obtained from the International Hospice and Palliative Care Association (IHPCA) for Terry Magee from UK, as well as Dr. Henry Ddungu and Ms Berna Basemera from Uganda. Hospice Africa UK funded Dr. Jack G.M. Jagwe, a senior advisor on Policy, drugs and advocacy at Hospice Africa Uganda. The program leader was Terry Magee, Director of Education at St. Helena Hospice UK, who together with Hospice Africa Uganda made the program and training handbook for the participants. The course was initially arranged to take two weeks with the first week being an introduction to palliative care and then training of trainers, during the second week. However, this was not possible. It remained a one week introduction to palliative care course. The team from Uganda arrived on May the 8th 2004 and had a one day rest before the course began. The team from UK landed very early in the morning of the day the course commenced. They were of course tired though they did not suffer from jet-lag – England is at the same longitude (Greenwich) as Accra. The Opening ceremony took place at the Ghana International Trade Fair in the afternoon of Monday the 10th. It was attended by many dignitaries including executive members of the Ghana Cancer society, government representatives and all the course participants. It was a very colourful occasion. The Keynote address was given by Dr. Ken Sagoe, Director of Human resources, Ghana Health Services. He emphasized government’s position towards palliative care in Ghana and their (Government) willingness to incorporate it into policy and advocacy. Professor F.T. Sai, Chairman, Ghana AIDS Commission and former examiner at the Institute of Public Health – Makerere University (Uganda), emphasized the importance of cancer prevention, early detection and pain and symptom management. The opening ceremony was on the headlines for the evening news on TV3 – a private TV company in Accra with a very wide coverage. A total of 96 participants registered for the course. Of these only 17% were males. 64% were nurses. Two doctors attended during the first few days. Thirty participants were students. These students would qualify to be nurses, but are not taken by government for training. They are identified and provided with special caring skills so that they can help out in the various communities, including hospitals in caring for patients. The training began on Tuesday 11th May 2004 with the first lecture given by Dr. Henry Ddungu, on the Hospice Concept. It was made clear that even with minimal funding one can care for a dying patient in need of palliative care, as long as there was commitment. Examples of locally available remedies that have been tried and found to be working were given and emphasized. Terry Magee is a very experienced teacher! She gave among others a wonderful practical session on the physiology of pain and all were left convinced. Dr Jack Jagwe discussed the laws governing use of Narcotics as well as ‘Myths and Fears’ on use of morphine to such a degree that all the fears they (participants) had waned away. Berna and John took the group through spirituality in the hospice context and the discussion groups never wanted to stop! It was such a good experience for the groups discussing various issues and sharing the various experiences. Grief and bereavement in Ghana was another interesting topic. The group agreed to divide into the different ethnic groups – the Gas, the Akans, the Ewes, the Dogombas and Mamprusis, and the Dagarees and Sissalas (Northern). Each of these groups gave their cultural beliefs towards grief and bereavement. It was so amazing to realize that even in the same country, different groups have differing cultures and beliefs when it comes to death and dying. It emphasized the importance of cultural considerations – Cultural Pain – and palliative Care. The trainees were a very enthusiastic group that was involved in-group work, asking and answering questions, sharing their cultural differences and many other important things. The course ended well and it was explained to participants how they were to write a reflective diary to be submitted to the Cancer Society of Ghana before they could receive their certificates in June 2004. They were all ready and willing to do this and to-date, many have received their certificates. During the course of the training we had a meeting with the executive of the cancer society of Ghana on the future possibilities following this initial training. It was suggested that the society would identify a few people who had grasped the concept, for further training as trainers of trainers. It was also suggested that a few nurses and a doctor be identified for a clinical placement in Uganda so that they gain practical experience in palliative care. As far as availability of oral morphine was concerned, this did not seem a very big problem because the department of health is already aware and willing to support the importation of oral morphine into the country. However we will see how this goodwill develops! It was however, emphasized that potential prescribers need to be sensitized on the use of morphine. Problems Identified:
All in all it was a very good experience for both the Ghana group and the facilitators from UK and Uganda. The training team was presented with very beautiful gifts from both the participants and the Cancer Society of Ghana to show their appreciation for the knowledge and skills they gained during the one week training. Acknowledgement:
By Dr. Henry Ddungu, MD and Ms Berna Basemera, RN Regional Report: South Africa Report on the Inauguration of the First African Palliative Care Association (APCA). In his opening speech the Hon. Deputy Minister of Health, Dr. Hussein Mwinyi gave his government's public support to the
African initiative to seek solutions to address the care of the dying. He also gave the assurance to the Tanzanian people that their government would support the Tanzanian palliative care association
in its efforts to develop policies around education and care for the terminally ill in Tanzania.
With such an auspicious opening the first annual general meeting and conference in Arusha Tanzania was in full swing.
The theme of the conference, promoting understanding and sharing is a vision that was embraced by all delegates.
The father of WHO's pain control stepladder, Dr. Jan Stjernsward, encapsulated the spirit of the historical event by quoting
the following - "THERE IS ALWAYS SOMETHING NEW OUT OF AFRICA"
As a South African I suddenly became aware of the importance of Africa taking its rightful place in history. As our young
people are dying around us, Africa needs to find its own solutions for its problems. We Africans must, in the words of St Francis of Assisi - "Start doing the necessary, you will then start to do the
possible and suddenly you would be doing the impossible". From our humble beginnings we have accomplished so much already, that the rest of the world can learn from us. Dr. Anne Merriman from Uganda
stated that Africa is facing an epidemic of death. She further stated that life is taken for granted when it is not yet threatened; when it is threatened it is as fragile and delicate as an egg and
is dependent on whose hands it is in.
Palliative care allows the lives of the vulnerable to be in the hands of a caring government, health care professionals
and communities. It becomes affordable, assessable holistic care that is care spearheaded by government and thus forms part of the government's overall strategy for health care.
How far do we still have to go to achieve this goal? The World Health Organisation sates that affordable palliative care
is in the grasp of even third world countries and it hinges on the following. Policy and commitment by government, education in palliative care for all levels of health care providers and access to
pain medication, especially the ever-illusive morphine.
The following illustrates the advances countries have made to develop palliative care in their respective countries.
Uganda and Zimbabwe include palliative care as part of the national curriculum for doctors and nurses. Uganda has had
the law changed to allow nurses to prescribe morphine provided that they are trained in palliative care. Similarly, South Africa includes palliative care as part of the national policy of health care.
They have developed an integrated home base care programme that makes palliative care accessible and affordable for most South Africans. Uganda and South Africa have world class training programmes
that can be adapted for all African countries. Botswana and South Africa have started the roll out of ARV's in all its provinces. Zimbabwe, despite all its problems, still manages to provide care. Unfortunately
affordable morphine is becoming harder to obtain. It does not help that their own government denies the problem. Namibia brought its government representative to the conference to obtain information
on how to start a national programme for itself.
We were humbled and inspired by countries like Rwanda, Mocambique, Ethiopia, Cameroon, Abidjan and Swaziland - where little
or no care exists; where poverty is the overriding factor of existence and the sustainability of poverty - alleviation - projects supersedes health care programmes. The absence of the Northern African
countries poses a major challenge to the African Palliative Care Association. It is imperative that we bring them on board as part of the initiative to plan and develop all of Africa.
Standards of care in clinical, governance, management-development and education, as well as funding, will be the focus
of all policy development. Luckily most of these have been and are being fine-tuned in South Africa and can be adapted to most countries. It is the hope of APCA that by bringing the expertise together
of all countries, affordable accessible palliative care will become a reality for all Africans. To this end all participating countries have committed themselves fully. In the words of the newly elected
president Kath Delfilippi, quoting president Nelson Mandela - "IF WE WORK TOGETHER WE CAN BUILD THE AFRICA OF OUR DREAMS". To this end we as Africans pledge our support to ACPA. May
your gods be with you.
By the end we had shared our common vision of palliative care for all. We have learnt from others and know that advocacy
becomes the responsibility of each and every person who has seen a single person die in needless pain or live with the effects of HIV/AIDS. Finally it is our responsibility to care for Africa's suffering
millions. GOD BLESS AFRICA.
Regional Report: Uganda Hospice Africa Uganda Newsletter Dear Friends, This has given us confidence that God will give us the necessary resources for this work as the need arises. We want to thank all of you who have prayed for Hospice and contributed resources that have kept us afloat during that uncertain period. To our pleasure and sometimes consternation the demand for palliative care services and training continue to grow and we are beginning to feel stretched as we try to meet the need. It is gratifying, also, to see Hospice increasing the network and partnership with other sister organizations such as Mildmay International, Mulago Teaching and Referral Hospital, Makerere University and The AIDS Support Organization (TASO). Many of our friends will be delighted to know that through such efforts the statute has been changed now permitting nurses and Clinical Officers, trained in palliative care to prescribe oral morphine in their own right (without being covered by a doctor). This has been signed by the Minister of Health and is another first for Uganda on the African scene. This will increase the number of prescribers in the country with the addition of clinical palliative care Nurses and Clinical Officers, able to control patients' pain and other symptoms especially at home. This Statute will boost the morale of the nurses who have already been trained and have gained experience in handling those with incurable illness during their hour of need. The change of statute indicates Government's confidence in the expertise of Hospice trained Nurses. Negotiations are still going on to have the Clinical Palliative Care Course (CPCC) for Nurses and Clinical Officers registered by the Nursing Council. We have recruited Catherine Owullu, a Nurse-Tutor, well experienced with our Ministry of Health, to advocate for nurses in palliative care and this course registration will be one of her initial tasks. Invitations from other African countries continue to come and Drs Anne and Jagwe travelled to Lusaka, Zambia in the last week of February 2004 to assist one of our palliative care trainees in the DLD programme scale up palliative care and the availability of oral morphine in that country. Two of our nurses, Berna and Mwazi travelled to Tanzania during the same period to provide technical support and support supervision to palliative care teams at Ocean Road Cancer Institute and PASADA. We are encouraged that these teams are delivering services to the terminally ill around Dar-Es-Salaam in spite of many constraints such as transport for the home care teams. More invitations have come in from Botswana and Ghana and we are preparing a response. Other responsibilities have been taken on, as Uganda takes a lead in preparing a new African edition of the book A Clinical Guide to Supportive & Palliative Care for HIV/AIDS. This book originally published in US and edited by Joseph F. O'Neill, MD, MPH et al in 2003, is a first. There are several Ugandans from different palliative care teams writing as primary or secondary authors with colleagues from S Africa and other countries in Africa. Many of our Hospice team are involved. Also APCA (African Palliative Care Association, has opened its first office in Fazal House at Hospice in Makindye with the first employee, Maureen Asiimwe, secretary to the association. There is much hard work to be done as the first General Assembly and Conference takes place from 1 – 5 June in Arusha. It will also be a meeting of palliative care experts from several continents but will be mainly for African participants. The steering committee are from 5 different African countries, S Africa, Zimbabwe, Tanzania, Kenya and Uganda, and are working hard to make this meeting a success. We look forward to meeting with many friends in Arusha in June. So with rapid developments both in Uganda and in Africa, with the spread of palliative care and peace to those in greatest need, we go forward with renewed joy to share with you the joys of Easter. God Bless you all. Ekie and the Hospice team
Regional Report : UK Derek Doyle OBE, MD (Edinburgh) The 20 or so years that followed the opening of St Christopher's Hospice in London in 1967 saw hospice and palliative care services being established all over the UK, four fifths of them voluntary (not for profit), the rest operated by the National Health Service NHS). By 1987 palliative medicine had been recognised as a medical specialty and palliative care nursing as a nursing specialty, and the subjects were, to a greater or lesser extent, being taught in most medical and nursing schools and colleges. Soon there were professional associations representing, and addressing the needs of, the physicians, nurses, nurse tutors, nurse managers, administrators, pastoral care workers, social workers, physiotherapists and many other disciplines and even the trustees of the independent, non-NHS services. Each looked at contracts, terms and conditions of service, remuneration, education and training, research, attracting recruits into this work, integrating with main-stream health care and their image and profile. Government, both local and national, found itself bombarded with calls for funding, for closer collaboration, and for recognition and respect for the contribution of palliative care. In its turn, government asked for more reliable data, evidence of needs assessment, rigorous standard setting and high-quality audit of everything done in palliative care services. Palliative care workers worldwide will recognise the problem as one they too have faced. It became obvious that a new body was urgently needed - one that would bring together palliative care providers (represented by the professional associations and regional representatives), the major national cancer charities, and the government itself. So was formed, in 1991, the National Council for Hospice and Specialist Palliative Care Services, initially funded by a multinational company - British Gas, with its Chairman the first chairman of Council - and staffed by an Executive Director and a very small but dedicated staff. The benefits began to be seen almost immediately. Communications with government were much facilitated, and government observers on Council and its sub-committees and working parties could ensure that national policy was understood by palliative care providers, and palliative care be better understood and appreciated by politicians and health planners. Soon Council began to publish a notable series of reports and recommendations on such aspects of palliative care as definitions, ethical issues, needs assessment, the care of patients with non-malignant conditions, minimum data sets, clinical guideline, outcome measures, care in the final days of life, clinical governance for voluntary services, cardio-pulmonary resuscitation, commissioning and provision of palliative care, cost analysis and much else. Perhaps one of the most innovative and useful creations of Council, but one few people have heard of, is the All Party Parliamentary Palliative Care Group. Recognising that members of parliament (MPs) needed to know as much as possible about palliative care and where it fitted into the spectrum of health care provision, Council, in cooperation with a few MPs who already recognised the importance of our work, invited fellow MPs to join them in meeting for an hour or so every few months to hear more about hospice and palliative care issues (in the UK and worldwide). The response was most encouraging and this model of involving and informing politicians has now been copied in several countries. There is little doubt that the steady development of palliative care in the UK is part due to Council. It has no executive powers but considerable influence. It does not threaten any individual or service but strives to ensure that all work together and speak with one voice. No longer is palliative care a 'Cinderella' discipline in British health care. Readers might find it interesting to look at Council's website www.hospice-spc-council.org.uk or to get a list of its publications from [email protected]. Though the focus of its work is the UK, many of the publications have international relevance and can be highly recommended. Dr. Derek Doyle 6. A Day's work: Mobile Hospice Mbarara A day's work at Mobile Hospice Mbarara by Dr Eunice Nyesigire, Medical Officer,
My day starts as early as 6:00am when I wake up in preparation for the work ahead. It is usually not known where I will spend my day until about 8:30am when it's announced by way of writing in the diary; Dr. X, you are spending your day in hospital. By who? yes you guessed right, Ms. Martha Rabwoni.
In a flash of a bee's wing, we are at the hospital and straight away to the wards. On a fully packed ward with some patients on the floor, we are guided to a patient in a corner, with a huge mass on the lower limb. The notes of the referring doctors are saying "advanced osteogenic sarcoma". The patient is visibly in pain and is distressed. We greet the patient, who replies in a solemn tone that he is fine. One by one we pass our introductions and explain that we are from Hospice Mbarara and we have been directed to him by his doctors and that we are there to help him with his pain. The next question from the patient is whether really this pain can ever be relieved. Humbly by the patient's poor and sorry state, we reply that with God on whom we depend, everything is possible; trying to use the most empathetic tone and words that we can afford. Ground rule:- If the patient seems to be in overwhelming and distressing pain, please score it and give a start dose of the "magic drug". Yes, I mean morphine, well, that is what I do. Over the few months I have been in Mobile Hospice Mbarara, we have been able to attend to well above 100 patients in hospital, most of whom have been under our care and the hospital. I hope I am not confusing you; it is this easy, some patients are referred to us to take over management of pain and follow-up at home while others are managed jointly with the hospital, especially the AIDS patients. Back to the point, after full assessment and dispensing our medication and after doing enough talking, we say bye to the patient who seems to be in a better mood now. On that particular day, we saw five more patients with considerable pain, some even more overwhelming. It is now 13 00hrs, we are winding up with the fifth patient on gynecology ward, who is elderly unlike our fist patient who was young. We pack our bags and hit the road. At the university gate its like about 10 bodaboda riders were expecting us. Most of the bikes looked not to have seen water for decades. Ignoring most of them, we choose two that looked less dirty, and off we are on our bumpy road back to Hospice. At Hospice Mbarara it is lunch time, and I breath a sigh of relief, the hospital visit for today is over and I get down to enjoying well cooked matooke for lunch. by Dr Eunice Nyesigire, Medical Officer, 7. Focus on IAHPC Board Member: Dr Daniela Mosoiu Focus on IAHPC Board Member Dr Daniela Mosoiu graduated in 1991 from the Medical University in Cluj, Romania. She completed her training in Medical Oncology and in 1995 she joined Hospice Casa Sperantei, the first Romanian hospice. In 1997 with the opening of the Resource and Training Centre for Palliative Care she became responsible for the training program for health care professionals in palliative care. Up to now over 2000 health care professionals from Romania and neighbour countries have attended the courses organized at the centre. She is founder and president of the Romanian National Association for Palliative Care and Vice-chair of ECEPT and is recognized as a key person to promote and develop palliative care in Romania at the national level. As a vice chair of the National Commission for Palliative Care and Pain Therapy from the Ministry of Health she is currently involved in the process of drafting the new opioid legislation and the one regarding the structure and requirements for palliative care services in Romania. With support from Trent Palliative Care Centre she is currently doing her PhD at the University of Sheffield 8. Hospice & Children: Help the Hospices Hospice And Children Jennie McDowall
Dear Colleague: Help the Hospices in partnership with the Association of Children's Hospices (ACH) and the Association for Children with Life- Threatening or Terminal Conditions (ACT) have been taking forward work on the action points proposed at the workshop, and Barbara Gelb (CEO of ACH) and myself will be presenting on the programme of work at the Children's Hospice International 16th World Congress in Edinburgh, in September. We would be interested to hear from National Hospice and Palliative Care Associations on the following areas:
We look forward to hearing from you. With best wishes
“Every child is my child” 3 March 2004 9. Webmaster's Corner Welcome
to the Webmaster's Corner! This month we have allot of great things to tell you about and a few upcoming sneak peaks. The IAHPC Hospice & Palliative Care Manual is now available in PDA Format for your Palm Pilot type devices. Professionals Available to Spend Time Abroad - View professionals who are willing to spend time abroad. You can submit yourself to be added to the list to spend time abroad. More Info Here Purchase items with the IAHPC Logo on them using the link below to donate to the IAHPC while shopping for cool items such as an IAHPC T-Shirt, Hat or Mousepad. http://www.cafeshops.com/hospicecare The IAHPC Fact Sheets are now available in Portuguese and to download in MS.Word Format in Portuguese. Our Book & Video Shop has has a few changes in the navigation to help you find your way around better. You can now view by author or category. Last month we added 6+ new titles. The International Directory has had 21 new listings this month, a great resource for all. Have a hospice and/or palliative care related question? Or just want to discuss hospice & palliative care issues? Join in at our Forum. No registration required. It's Free Coming Events! Do you have a Hospice & Palliative Care event you wish to promote? Did you know you can Subscribe
& Save Up To 80% on popular magazine subscriptions while helping the IAHPC! Over 80,000 titles to choose from. Sneak Peeks What's Coming! Until next month! Editor's Notes USA The US Drug Enforcement Agency and a whole host of pain specialists, including people knowledgeable in palliative care, have
published an extensive document entitled Prescription Pain Medicines: Frequently Asked Questions for Health Care Professionals and Law Enforcement Personnel. This document sets out
the principles one should follow for the legal, safe and effective use of opioids in all types of situations. It is a road map to help physicians stay out of trouble and become comfortable using this
important class of medication. Ultimately, this should help patients who have pain and reduce their suffering. Canadian Virtual Hospice An online resource for patients, family, professionals and volunteers of Canada. Note: The Journal of Pain and Symptom Management becomes the professional journal of the National Hospice and Palliative Care Organization. WHO Europe Publications The Solid Facts - Palliative Care
Meetings The 2nd Global Summit of National Hospice and Palliative Care Association’s- 15/16th MARCH 2005 - Korea We are pleased to confirm that the second national associations‘ meeting will be held on March 15/16th 2005 in Seoul, Korea. This follows the successful first meeting of representatives from hospice and palliative care umbrella bodies or National Associations held at the Hague in March 2003, where issues of concern to these organisations were discussed and workgroups were set up to take the work forward. The 2nd Global Summit will be a pre-conference meeting before the 6th Asia Pacific Hospice Conference on 16 - 19 March 2005 - see http://www.aphc2005.org. Please put this date in your diary and book your place! We are expecting costs to be for hotels only - estimated to be £50 for the night (although you may want to stay longer for the Asia Pacific Conference.) Please contact Louise Gray with any queries - [email protected]. There will be some Travel and Cost support bursaries for delegates from resource poor countries. Proposed areas of focus Following a recent teleconference, the steering group agreed that the schedule should be as overleaf. There are chairs leading work in this area - if you would like to contact them to be part of working groups or keep up to date with their work, please contact them Quality of care including monitoring tools and standards
Chair Stephen Connor, USA Advocacy - Chair Sharon Baxter, Canada
Education and training - chair Liz Gwyther, South Africa
Global Public Awareness Raising/World Hospice and Palliative care Day - Chair Tonia Barnes, Australia
Funding palliative care - Chair Mary Calloway, OSI
National Association Organisation issues - Chair Andrew Rehbergen, the Netherlands (tbc)
Information - Chair - Nick Pahl, UK
World Hospice and Palliative care Day 8th October 2005 IAHPC, EAPC, OSI, US, Irish and other hospice and palliative care national organisations will b be launching a world day linked to Voices for Hospices http://www.voicesforhospices.org/ (which organises concerts around the world to raise funds for hospice and palliative care services in 45 countries around the world) for October 8th 2005. The idea is that we have an awareness raising element (similar to World AIDS day) to the Voices event and this is called “World Hospice and Palliative Care Day.” In the UK we are planning a major conference, concert and parliamentary event. We plan to send round materials soon - but you may want to start preparations (planning, booking venues etc) soon. Contact me for more information. Best wishes International Workshop on 'Community Participation in Palliative Care' 26, 27 & 28 November 2004 The Neighbourhood Network in Palliative Care (NNPC) groups in Kerala in association with Department of Community Medicine, Medical College, Calicut and Institute of Palliative Medicine, Medical College, Calicut, Kerala 673008, India Tel/Fax: 0091 495 2354897, Email: [email protected] Dear Friend, Over the last few years Neighbourhood Network in Palliative Care (NNPC) groups in Kerala have been able to evolve a system of care to improve the quality of life in people with incurable diseases. The work involves trying to address the physical, social, emotional and spiritual problems of the patient and family. The NNPC groups in Kerala in association with Department of Community Medicine, Medical College, Calicut and Institute of Palliative Medicine, Medical College, Calicut is holding an international workshop in November 2004 to explore the major issues related to community participation using palliative care and NNPC as the 'entry points' for discussions. This workshop is expected to discuss the theoretical and practical issues related to community involvement in health related issues generally and in palliative care specifically. The event will also offer an opportunity for the participants to work with the community volunteer groups for an exposure to the community programs in palliative care in Kerala. The topics for the Workshop include Psycho social care in the community
Facilitation of community participation: Neighbourhood Network in Palliative Care
The scope and limits of community participation in health care programs
Fund raising for health care activities in the community
HIV / AIDS related issues: Challenges before Third World as against the Western
Experience
Community Participation in health and related areas: Experience from the rest of the World
Research with community involvement
To facilitate maximum interaction between participants, we have decided to limit the number of registrants to 200. So kindly send your forms as early as possible to ensure participation. For Details Please Contact: International Workshop on Community Participation in Palliative Care, Institute of Palliative Medicine, Medical College, Calicut, Kerala 673008, India Tel / Fax: 0091 495 2354897, Email: [email protected] Hospice and Palliative Care: Current Issues September 9 and 10, 2004 8th Annual Interdisciplinary Approach to Palliative Medicine in Cancer Care Sponsored by the Department of Palliative Care and Rehabilitation Medicine, UT MD Anderson Cancer Center Practical Aspects of Palliative Medicine: Integrating Palliative Care into Clinical Practice Sponsored by the Harvard Medical School Center for Palliative Care and the Dept of Continuing Education Cachexia in Aging and Cancer Sponsored by the Department of Oncology, University of Alberta XII International Conference of the Indian Association of Palliative Care Feb 11-13; 2005 Third annual international Palliative Care in the 21st Century: Issues and Innovations in End-of-Life Care Sponsored by the Professional Education Center of the Jewish Home & Hospital Lifecare System National Meeting on Palliative Care of the Argentine Association for Medicine and Palliative Care (AAMyCP) Neuquen, Argentina Further information can be found at www.aamycp.org.ar or by email to
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