International Association for Hospice and Palliative Care
Subject: IAHPC Newsroom 2005; Volume 6, No 11, November
William Farr, PhD, MD
International Association of Hospice and Palliative Care (IAHPC)
The September issue of the IAHPC newsletter is now on our website at URL:
To send an email to one of the IAHPC Newsletter team members,
Please click on the title of any article to view the full article.
Kathleen M. Foley, MD (USA)
Our call for nominations of candidates to the IAHPC Board received an enthusiastic response from our members. Fourteen candidates from all over the world were presented. The board will elect six directors, based on several criteria, including their level of involvement in palliative care in their countries, their demonstrated leadership in the field, their interest in international palliative care initiatives and their potential to help IAHPC in the accomplishment of its mission. New members will be announced by the end of November and in our next edition of the NL.
World Hospice and Palliative Care Day
As you know, October 8th was the first World Hospice and Palliative Care Day by Voices for Hospice. This effort was coordinated by Help the Hospices and brought together health care providers, patients and the general public around the globe to celebrate hospice and palliative care. The level of advocacy and dissemination of the principles of palliative care reached critical masses of people, policy makers and health care providers. Congratulations to Help the Hospices and Voices for Hospice for this great success. We hope that countries around the world will continue to take advantage of the momentum that the Day generated and use it to promote changes in policy and practice to improve access to palliative care. IAHPC was proud to provide grants to ten developing countries to support the activities of the World Hospice and Palliative Care Day. This edition includes some reports from Argentina, Colombia, India, Jordan, Lithuania, Philippines and Uruguay. The website edition includes photos and pictures of some of the activities
On October 10-14th we participated in a seminar organized by the Department of Palliative Care at the MD Anderson Cancer Center in Houston. It was a great conference and we were able to support Dr. Eva Duarte from the National Cancer Institute in Guatemala and Ms Kalpana Baniya, RN, from B.P. Koirala Memorial Cancer Hospital in Bharatpur, Nepal as Traveling Scholars to the meeting. Both stayed two weeks as clinical observers, visiting and learning in the palliative care department and at Houston Hospice. Ms Baniya presented her Hospice program in Nepal in our workshop on Palliative Care in the Developing World and Dr. Henry Ddungu from Uganda presented a plenary on the Hospice Uganda program. He received a standing ovation from the public in recognition of the hard work and success of the Hospice Uganda program.
.Focus on Palliative Care Programs in the World
Liliana recently returned from a trip to Spain where she participated in the VII Jornadas Nacionales de Cuidados Paliativos in Caceres organized by the Sociedad Española de Cuidados Paliativos (SECPAL) and the Programa de Cuidados Paliativos of the Servicio Extremeño de Salud (Palliative Care program of the Health Care Services of Extremadura). These Jornadas were different from conventional palliative care meetings, as they focused on management, funding and policy issues. The long term success in the development of palliative care around the world will depend on the ability of health care providers to communicate effectively with policy makers and funders. Health care providers need to learn the language and work with their health authorities in order to be able to implement cost effective and efficient programs suitable to be incorporated into the countries' health care policies. Spain has taken some important steps that have guaranteed the provision of palliative care. First, the country has a structure of health care provision which facilitates the integration of services into the system. Second, palliative care has been recognized as a human right. These two, combined with a strong leadership of SECPAL, have had a significant impact in the outcome of care of patients in need.During this trip, Liliana was also able to visit with the local health authorities in Extremadura. The Palliative Care Program of the Servicio de Salud de Extremadura received the IAHPC Institutional Award in 2003 as recognition for its ability to incorporate palliative care in the primary level within the health care system. It has proved to be cost effective and has been recognized as a model flexible and adaptable in developing countries. Palliative Care is guaranteed to all the population of the state of Extremadura regardless of diagnosis, age, condition and location in all levels of care.
The Journal of the Royal College of Physicians of Edinburgh has published a paper by Dr. Derek Doyle, our founder and board member, entitled " Palliative Medicine: the first 18 years of a new sub-specialty of General Medicine" with sections related to the UK, Australia, Singapore, Taiwan, Hong Kong, Poland, Romania and New Zealand, USA and Canada. The paper is available online in http://www.rcpe.ac.uk/publications/articles/palliative_medicine.pdfWe invite you to read this wonderful publication and learn more about how palliative medicine is gaining recognition as a subspecialty in medicine.
One to One
We recently launched a One to One for Hospice and Palliative Care campaign with our members. In this campaign we are asking our members to bring one new member to IAHPC. We have sent hundreds of letters which you should be receiving in the mail soon. Membership is an important way to support our organization and provides members the possibility of participating in our teaching programs. Membership can be individual or institutional and is affordable to all through a sliding fee schedule. Please join us in this campaign and help us to help others.
IAHPC Recognition Awards - Call for Nominations
We are now accepting applications for the IAHPC Recognition Awards Program in the individual, institutional and university categories. We invite those interested to nominate their program, university or an outstanding individual to this award as a way of providing recognition to those who have had a significant impact in the development of hospice and palliative care around the world. Applications for nominations are available in our website at www.hospicecare.com Click on IAHPC Programs and then select Awards.
Until next month,
Kathy Foley, MD
Ahmed Elsayem, MD
After receiving a grant from IAHPC, as a Traveling Fellow, I traveled to Sudan in the period August 23, 2005 through September 16, 2005 with a purpose of implementing a palliative care service there.
Sudan is the largest country in Africa with a size of one million square miles. It has an estimated population of 33 million with only 2% of the population over age 65. Poverty is wide spread particularly in rural areas. Health resources are very limited helping to explain a very short life expectancy of 57 years and an infant mortality rate of 65 deaths per 1,000 live births . Nine countries and the red sea border Sudan . These countries include Egypt , Eritrea , Ethiopia , Kenya , Uganda , Congo , Chad , Libya and the Central Africa Republic ,. The country has suffered from a devastating civil war for the last 22 years that has left millions of its population poor, homeless and refugees. As a result of famine and poverty, the health system has suffered significantly and the spread of infectious diseases such as HIV/AIDS has reached an alarming level.
Cancer in the Sudan
Cancer ranks second as the most common cause of death after infectious diseases (mainly malaria and tuberculosis). There is only one major cancer center in Sudan (The Radiation and Isotope Center ) located in the nation’s capital Khartoum . This cancer center receives referrals from all over the country. Two radiation oncologists and 4 medical oncologists operate the center. The center sees about 15,000 cancer patients per year. In this cancer center, surgery and radiation therapy are the main modes of cancer therapy. There is a deficiency of chemotherapy.
The staff of the cancer center has very limited information about the use of opioids and fears the possibility of opioid addiction/diversion. Dr. Ibrahim Elfadil, one of the medical oncologists, has expressed a strong interest in leading a palliative care initiative. He is a gynecologic oncologist who trained in Europe and recently arrived in the Sudan.
HIV has increased significantly, especially over the last 10 years in war torn areas of Sudan . According to the 2004 UNAIDS/WHO global update, there is an estimated four hundred thousand people living with AIDS in Sudan with a high estimate approaching one million and three hundred thousand, especially in the southern part of the Sudan. Efforts to control the disease and to educate patients are limited by the political and social stigma of this disease, as is in the majority of Muslim countries. The majority of these patients in Sudan do not receive anti-retroviral therapy.
Unfortunately, awareness about palliative care is non-existent. The majority of cancer patients die at home without medical help or the control pain and other symptoms. Many of the advanced cancer patients are sent home to die without end of life care. Nonsteroidal anti-inflammatory drugs are the main modality of pain management. The following medications were also available in the pharmacy at the cancer center:
Most cancer patients were given opioids for only 2-3 days. There are strict rules for dispensing opioids, and involve filling out a long form and taking the ID of the prescribing physician. Opioids are not available in the street pharmacies.
1. As a native of Sudan , and a palliative care physician, I have been very interested for a long time in helping design and develop a palliative care program in the country. I am familiar with the cultural and socioeconomic conditions in Sudan as well as the cultural beliefs surrounding care of dying patients. I am therefore able to identify with the locals and communicate effectively with them.
2. During my one month stay, I had the chance of meeting and working with many colleagues who are practicing in Sudan . I discussed with them the importance of introducing the palliative care concept s into their hospitals and practice in order to help improve the care of the many suffering and dying patients. Physicians and staff expressed great interest in incorporating palliative care.
3. I presented a lecture about pain and palliative care at the Radiation and Isotope Cancer Center in the presence of all medical and radiation oncologists, nurses, psychologists and other supporting staff. The lecture was followed by a didactic session where barriers to implementing palliative care were discussed. This session resulted in significant enthusiasm to start a Palliative Care service
4. I gave a lecture at the Pediatrics Grand Rounds in the Khartoum Teaching Hospital entitled: Pediatric Palliative Care. More than 150 physicians attended. This was followed by discussion about the need to implement palliative care for children in the Sudan .
5. Because of the limited availability of opioids, I arranged for a meeting with the chief of the Central Pharmaceutical Supplies who was a previous minister of health. I have discussed with him in great detail the importance of introducing different opioids, which may be required including methadone, short acting oral morphine & hydromorphone. He expressed concerns about opioid diversion or misuse. After a long discussion he expressed strong support and willingness to cooperate in bringing in all needed opioids if there’s a trained medical staff that is able to use them.
6. I saw many advance cancer patients during this visit both in Khartoum Teaching Hospital and also in other hospitals.
7. I have discussed the issue of hospice care with Dr. Abbashar Hussain, an associate professor of neurology at the University of Khartoum . He chaired a similar work for epilepsy patients which was supported by volunteers. We discussed the issue of establishing hospice care in Sudan and he showed great enthusiasm and interest in pursuing this.
I would like to express my gratitude to the International Association for Hospice and Palliative Care for their support and encouragement.
Dear Members and Colleagues:
As you know, IAHPC is a lean organization that supports many individuals and programs around the world with very limited funding. Membership payment and donations from individuals are important sources of financial income to our Organization that enables us to continue helping others. One of our goals is to double the number of members by the end of 2006 in a membership campaign called One to One for Hospice and Palliative Care.
In our One to One for Hospice and Palliative Care campaign, we are asking each one of our members to recruit one new member and start a chain to bring all hospice and palliative care providers together in this effort. If each one of you brings at least one member to IAHPC, this would be a significant help to the Organization and to the development of hospice and palliative care around the world.
Details about our programs and a membership application are also available online in our website at www.hospicecare.com Additional information about IAHPC, our programs, our mission and board of directors is also available in our website.
Your membership provides credibility to IAHPC and improves our ability to help promote hospice and palliative care in the World. You can make a difference!
One hundred US dollars ($100) of membership or donation funds provides the following:
* Helps to send 80 pounds of books and supplies to developing countries
* Pays for the operation of our website for 4 weeks
* Covers twenty per cent of the cost of a Traveling Fellow, who is invited to teach for 2 weeks in a developing country
* Contributes to the salary of a faculty palliative care professor in a university in a developing country.
Membership Benefits Include:
* Privilege to apply for Traveling Fellowships, Traveling Scholarships and the Annual Recognition Awards!
* Reduced fees to popular journals & books and website services
To join IAHPC, go to our website at www.hospicecare.com and click on the Join/Renew button on the right hand side of the screen.
I hope you will join us in this One to One for Hospice and Palliative Care campaign and bring a new member to IAHPC. If you have any suggestions and comments, please do not hesitate to contact me.
ANA M RESTREPO
NOTE: To view World Hospice & Palliative Care Day photos please visit the folowing link
Our week began with an interview with Liliana De Lima on a local radio station which has international coverage over the Internet. On October 1 st, during Pablo Rossi’s Show which is broadcasted every Saturday morning, Liliana explained what palliative care is and announced the beginning of our activities with the “Psychology and Pain Symposium”, given by Lic. Ana María Corrao and organized with Cordoba ’s Catholic University Medicine School.
During the days that followed, our presence in the media was increased due to the comments made by a well known and influential journalist, Rebecca Bortoletto both on radio and on TV. A film was made of our foundation’s home, where we plan on organizing a Day Hospice and our message as well as our request for help was aired on TV.
The inauguration ceremony of our house on Friday, October 7 th was attended by many friends and businessmen who showed their will to help.
On Saturday 8 th, we ended all these activities with the local version of Voices for Hospices – the fourth time we participated in this world event. It was truly a beautiful evening, and four choirs gave life to a show. Haendel’s Messiah Alleluia finished with a standing audience and a warm and thankful applause.
The echoes of the week continued on October 17 th, the international day against pain. On this day, the largest newspaper in town, La Voz del Interior, published the results of a survey in Cordoba made by the local association against pain. We thank IAHPC for its support, which allowed us to do advocacy work and dissemination of hospice and palliative care principles.
Maria de los Angeles Pruvost
A report from the Department of Pain and Palliative Medicine Amrita Institute of Medical Sciences, Kochi , Kerala , India
World Hospice and Palliative Care Day 2005
The Department of Pain and Palliative Medicine, Amrita Institute of Medical Sciences, Kochi is conducting a competition in three prominent schools in the city where senior students will participate in three competitions: 1) a ‘slogan - towards a pain free world’, 2) a ‘poster on- cancer related suffering’ and 3) an ‘essay on how students can contribute to caring for people suffering from incurable diseases’.
The staff from the department will also address the students of these schools about what palliative care is and how it can help people suffering from incurable illnesses.
The staff from the department will also have an interactive session with the teachers of these schools to equip them with the necessary information about palliative care.
Leaflets on palliative care and frequently asked questions about palliative care will also be distributed at the schools so that the message of palliative care day also reaches the homes from where the students come from.
Programs with ‘Kudumbasree’
Kudumbasree is a multi-faceted, women based, participatory, poverty eradication program, jointly initiated by the Government of Kerala and NABARD. The department is conducting an essay writing competition on ‘how the community can care for the terminally ill’, among the members of the local units of Kudumbasree.
Programs in Amrita Institute of Medical Sciences, Kochi
In connection with the World Hospice and Palliative Care Day, a Gold Medal Examination (Amrita Gold Medal in Pain and Palliative Medicine- supported by The Bruce Davis Trust) was conducted for the 4 th year medical students. A certificate of merit will be issued to all those who passed the examination and the topper will receive the gold medal. A leaflet on Palliative Care Day issued by the Indian Association of Palliative Care will be distributed to all the departments [clinical and non-clinical] in the institution.
Programs by Consortium of Pain and Palliative Care Units in Ernakulam District
The eleven Pain and Palliative Care units active in Ernakulam district [which also includes the Corporation of Kochi] form the consortium. In connection with the World Palliative Care day the Consortium is organizing an All Kerala Workshop in Palliative Care on 8 th & 9 th October 2005. Scientific sessions on ‘Home Care’, ‘Rehabilitation’ and ‘Palliation for HIV infected’ are the highlights of the workshop. It is open to doctors, nurses, social workers and volunteers interested in palliative care.
The winners of the competitions conducted among the school students and members of the Kudumbasree units, by the Department of Pain and Palliative Medicine, Amrita Institute of Medical Sciences, Kochi , will be honored with prizes during the workshop.
‘Pallium India’ a non-governmental organization, which supports and promotes various palliative care initiatives and activities at the local, state and national level, in collaboration with the Department of Pain and Palliative Medicine, Amrita Institute of Medical Sciences, is promoting a young man with paraplegia. This young man sings well and the department is arranging for an orchestra for him to sing at the workshop. It is hoped that this will encourage him to take to singing as a profession and some day he may have his own show. This could also be a live demonstration of how palliative care can provide rehabilitation, which is the subject of one of the scientific sessions.
Compiled by Dr. Biju Raghavan, Department of Pain and Palliative Medicine,
Amrita Institute of Medical Sciences, Kochi 682026, Kerala , India .
Día Mundial de los Cuidados Paliativos
Eduardo García Yanneo, MD
As in several other countries, we celebrated the World Hospice and Palliative Care Day on October 8th which was a success in many ways.
The event in Montevideo was organizad by the Sociedad Uruguaya de Medicina y Cuidados Paliativos, with the support and help of the volunteer group “Damas Rosadas” from the Hospital Clinicas. We also had the support from the IAHPC, which was not only an honor and a recogntion, but a signficant help that facilitated the organization of the event.
We had a beatiful day in explanada de la Intendencia Municipal de Montevideo (located in the main avenue in the city). The event started with the Interior Minister of Health, Dr. Fernández Galeano, followed by the Director of the Nacional Cancer Control Program, Dr. Ignacio Musé, and finaly, the President of the Sociedad Uruguaya de Medicina y Cuidados Paliativos, Dr. Roberto Levin.
After this introduction, we carried on with the artistic activities which included singers, a Tango Grop “Gardeleando”, a music group from the Hospital de Clinicas and a group of flamenco dancers.
After all these activities, we read the declaration of the World Health Organization and freed several piegeons ending this wonderful day. The main objective of the event was to disemínate palliative care information among the community. During the event and the day, brochures explaning the WHPCD were distributed, which included the Rights of Terminal Patients and the WHO definition of palliative care.
Algunos de los integrantes del grupo organizador al finalizar al acto.
Several activities were also carried out to celebrate WHPCD in other areas including Carmelo and San Jose. We are certain this has generated additional enthusiasm and that this will lead to greater knowledge about hospice and palliative care in Uruguay.
Dr. Annabelle De Guzman President, Hospice and Family Care Foundation
On October 8. 2005, the Hospice and Family Care Foundation of the Philippines, Inc. held a city wide motorcade in the early hours of the morning. Fifteen cars participated; all were adorned with streamers and balloons. The mortorcade was led by two trucks filled with drummers, harpists and lyre players. The instrumentalists were students from the Manduriao City High School’s band. This attracted attention to the large streamers that announced World Hospice Day in Iloilo City. Thus the public was informed that this was a big day in the city.
Around 8:00 am, after the motorcade began at the Western Visayas Medical Center, people flocked to the rooftop of the supply and maintenance building of the Hospital to start the program for the World Hospice and Palliative Care Day. Those invited were local media, hospital personnel, government officials, businessmen and students. Around 200 people were present at this event. Most significant was the presence of the Governor’s representative who pledged to give 100,000 PhP in support of the program. He served as the inspirational speaker for that morning’s celebration. He also invited the public to celebrate Hospice Day next year at the Provincial Capitol (the White House of our province), and invited the public to create awareness about the program. After his speech, many testified about their involvement in Hospice Care, including patients, which brought tears to the eyes of many. Two clergy men, a priest and a gospel minister, appealed for people to donate funds and services to the program. Those who responded to the appeal were Mrs. Maggie Hofilena, herself a breast cancer survivor, pledged 10,000 PhP, Mrs. Nelly Obligacion, a philantrophist, pledged another 10,000 and a cancer support group, The Bosom Frineds, pledged another 10,000. Afterwards, offering plates were passed around and another 4,000 PhP were collected.
To cap the day, a sumptuous lunch prepared by the Foundation was given to the participants. To their delight, medical students including post-graduate medical interns rendered special numbers. All those who attended were also given tokens of their visit and participation. Everyone thought it was worthwhile to attend such a memorable and touching event. The whole event was covered live by the ABS/CBN network, channel 10, and broadcasted to the public. The next day, two local dailies covered the event on their feature and news portions of the newspaper.
As a result of the celebration, an art aficionado has volunteered to give 20% of the proceeds from his next art exhibit and he will paint a memorabilia for the Hospice Program in Iloilo City. The Philippine Charity Sweepstakes Office has also promised to look into the possibility of increasing their support and grant to the ongoing construction of the Hospice and Family Care Center, a 3- story, 60 bed center for the terminally ill, in Iloilo City. This is a first for Iloilo City and a first also for the whole of The Philippines.
Activities during World Hospice and Palliative Care Day In Lithuania :
1. A conference took place on the 6th of October. There were about 500 participants - physicians, nurses, social workers and a few priests.
2. On the 7th of October there was a meeting of Palliative Medicine Association of Lithuania. There were about 60 participants. Among the guests were representatives from Parliament, Government, Manucipality, and the Archbishopric.
3. On the 9th of October, in Opera House of Kaunas, "La Traviata" was performed and dedicated to Palliative Care Day. There were about 400 spectators.
4. The members of Palliative Medicine Association of Lithuania talked on the radio and TV.
5. Articles about palliative care were published in the media.
6. We published a book on our 10 year history of the Palliative Medicine Association in Lithuania.
Not only is Dr. Mohammad Bushnaq, our first international palliative medicine fellow at San Diego Hospice & Palliative Care, he is striving, along with a growing interdisciplinary team, to integrate palliative care into King Hussein Cancer Center (KHCC). The Center now sees more than 60 new patients per month and provides care in all settings including the home. The KHCC team is also striving to expand the implementation of palliative care across Jordan through increased public awareness during World Palliative Care Week.
I understand they had great attendance!
The King Hussein Cancer Centre in Jordan held workshops and seminars for World Hospice and Palliative Care Day.
On 8 October a seminar titled "holistic approach of palliative care" was given by a palliative care physician, a psychiatrist, and a chaplain. The goal was to increase public awareness of palliative care with the public being the target group.
On 9 October an Executive committee meeting and workshop was held.
The goal was to come up with national guidelines to build palliative care programs in Jordan . The target for this effort was the palliative care committee, minister of health, directors of major hospitals, deans of medical and nursing schools, and decision makers.
October 10 there was a seminar on "building palliative care in Jordan "
The goal was to increase awareness of health care workers about palliative care, and deliver the principles of palliative care to the target audience of physicians, nurses and pharmacists.
Please join me in congratulating the entire team at King Hussein Cancer Center on their ever expanding successes in Jordan!
PS. We look forward to having Mohammad back with us for another month of training in February 2006.
We are also looking forward to having our second fellow from KHCC, Dr. Hasan Abbas, join us in January 2006 to start his fellowship training in palliative medicine.
Frank D. Ferris , MD
Marta Ximena Leon, MD
For the World Hospice and Palliative Care Day in Colombia , we organized events in six cities in the country: Bogotá, Cali , Medellin , Barranquilla , Cartagena and Bucaramanga . We are very appreciative of a grant received from IAHPC to help in this effort. In each city we had academic seminars and cultural events. Between 150 and 300 persons attended the seminars, including doctors, nurses, sociologists, social workers, students, patients, ethics committees and the general community.
In Bogotá, the National Secretary of Health participated and as a result some important steps have been taken towards the elimination of regulatory barriers in the use and prescription of opioids by extending the validity of the prescription of potent opioids from 10 to 30 days. Also, we are currently working on the inclusion of different opioids in the Health System so they are provided directly to public hospitals without having to go through the administrative offices at the regional governments. In addition, the local secretary of health and two senators participated in the meeting in Cali and several outcomes resulted from their participation including a program to establish palliative care as part of the network in the local health care system.
We also organized a children’s art contest for a National Poster to celebrate World Hospice and Palliative Care Day among children with HIV and Cancer. We received more than 100 drawings from children in Bogotá, Cali and Medellin and funds were raised from a private foundation for the prizes. In addition, we had movie forums, art exhibitions, painting contests, writing contests and musical sessions.
The event was widely covered by the local, regional and national media through newspapers, radio and television. A manuscript is now being prepared with a summary of all the events that took place in the country and a plan of action to promote palliative care in the country.
We are very grateful with IAHPC for supporting Colombia in the celebration of World Hospice and Palliative Care Day. We also thank all those who participated in the activities, including health care workers, patients and volunteers and to the coordinators in each one of the different cities around the country who worked tirelessly to make this a great event.
European Association for Palliative Care and Hodder Arnold announce free online access to Palliative Medicine until January 2006!
To take advantage of this exciting offer, please visit www.ingentaconnect.com/content/arn/pm
HELPING GRIEVING PEOPLE When Tears Are Not Enough
Room 217. Music for Life’s Journey
Available from http://www.room217.ca (site is secure, international shipping available)
‘Music is a powerful medium of comfort, communication and connection for the human spirit. In end of life situations it can be an invaluable support for one in transition and for caregivers at the bedside. Timeless melodies can reassure troubled hearts and reach into the depth of souls.’
These three CDs by Canadian musician Bev Foster have been produced specifically for use in end-of-life care. I found them to be a wonderful collection of tastefully arranged music that is so soothing. The celtic blood in me certainly responded to all the traditional favorites in Whisperings. But I most enjoyed the instrumental only Gentle Waters, which combines Bev Foster’s piano with the beautiful warm sound of a solo cello that Wendy Solomon makes sing.
I think these CDs will be very useful in the palliative care setting and I have ordered a set for my ward. They’re already downloaded onto my personal iPod.
I am pleased to inform you that the Journal of the Royal College of Physicians of Edinburgh has published a paper by Derek Doyle entitled " Palliative Medicine : the first 18 years of a new sub-specialty of General Medicine" with sections related to the UK, Australia, Singapore, Taiwan, Hong Kong, Poland, Romania and New Zealand, USA and Canada. The paper is available online in http://www.rcpe.ac.uk/publications/articles/palliative_medicine.pdf
The Observatory has recently added Jordan and the Palestinian Authority to its growing list of reports for the Middle East Cancer Consortium (MECC).
Select the link below for further information.
Have a pleasant weekend.
Click on the link below 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.”
Mick wanted to inform you all that last night we had a reception launching “Suffering at the end of life - The state of the world” (now at http://www.worldday.org/documents/state_of_the_world.pdf ) in the presence of HRH Princess Anne. There followed a fantastic concert with musicians including John Williams, the guitarist, Markasa and Kaya players.
Mick Thorpe with princess Anne in the Oct 4 reception launching the publication Suffering at the End of Life - the State of the World as part of the activities to celebrate World Hospice and Pallaitive Care Day.
There has been significant news coverage throughout the day about the launch including an interview with Archbishop Desmond Tutu and palliative care services in India and Uganda on BBC World Service Outlook, a BBC News 24 interview, and BBC Breakfast interview with David Praill and a hospice user from the Iain Rennie hospice at home service on BBC Breakfast. An interview with Chris Shaw can be seen at the following link
There are only 2 days to go until World Hospice and Palliative Care day with over 700 events in over 60 countries around the world. In the UK there are 210 Voices for Hospices concerts, 200 Music in Hospitals concerts in hospices and hospitals, a Day Care patients families and carers walk to raise awareness and funds around the country, a family day at the Rowan's Hospice Portsmouth, an open day at the Lewis-Manning hospice in Poole and at the St Vincent's Hospice, Scotland and a musical evening with talks on palliative care at the End of Life Observatory in Lancaster……
Dr M.A.Meiring (Director/Paediatrician for CHOMP)
In June 2003, the Children’s Homes Outreach Medical Programme (CHOMP), then a 6 month old organisation, invited the Hospice Association of the Witwatersrand (Hospice Wits) to give a talk to caregivers from the Johannesburg children’s homes on palliative care for children. I could hardly wait for the presentation to be over so that we could sit down and talk to our invited speakers about something that became glaringly obvious to both of us during the presentation - we needed to work together to meet the palliative care needs of children in Johannesburg.
CHOMP had discovered several “makeshift hospices” in the children’s homes, created out of a well intentioned need to look after chronically ill, mostly HIV infected, children. The Children’s Homes that had opened these facilities all told similar stories as to why they had done so. Some had found themselves in the situation where they had to care for a dying (HIV infected) child who had been turned away from an overburdened hospital; others were dissatisfied about the care of these children in government hospitals; or wanted to be with “their” child at the time of death rather than having them die alone in a hospital ward.
CHOMP was concerned about the level of care in these facilities, especially in those that were poorly staffed and had no access to basic drugs. CHOMP approached Hospice Wits for assistance in this regard.
After much deliberation and two meetings, Hospice Wits decided to open a pilot paediatric in-patient palliative care unit within their adult Hospice. The agreement between our two organisations was that Hospice Wits would provide and run the facility on a daily basis and CHOMP would provide Paediatric input for the children admitted there, as well as assist in the training of staff on aspects of Paediatric care.
One of the larger patient care rooms in the Hospice was then converted into a “5 bed paediatric unit”; one of the advantages of small patients is that they don’t take up too much space!
In July 2003 we admitted our first patient. The unit extended its services later that same year to children from the hospitals and has to date cared for 101 patients. Although the majority of children (87%) admitted have HIV related conditions, we have also cared for children with non-HIV related conditions. These have included children with malignancies (5), neurological conditions (5), renal failure (2) and liver failure (1).
Even though the unit has cared for this many patients, it has not been operating at maximum capacity. We believe this is due partly to the fact that many paediatricians still have misconceptions as to what palliative care is all about and are reluctant to refer children to Hospice. Also the unit is situated in an affluent suburb that is far for the neediest children and in particular those from the Soweto Township , in which Southern Africa ’s largest hospital, the Chris Hani Baragwanath hospital, is situated.
Fortunately the planning and construction of a larger, permanent building, to take the place of the present inadequate facilities of the Hospice Wits branch in Soweto , will have a separate 10 bed Paediatric In-Patient Unit and is already underway. The CHOMP/Hospice Wits partnership will continue to collaborate in the running of this second paediatric palliative care facility.
Parallel to this initiative, the Hospice and Palliative Care Association of South Africa, several South African Hospices (including Hospice Wits),CHOMP and other individuals have collaborated together to design a short course for professionals in paediatric palliative care. Hospice Wits and CHOMP will be conducting their first official course in Johannesburg in three weeks time!
This partnership for me has been extremely exciting. I have been converted from a previously “palliative care naïve” paediatrician to one who would like to make this much needed field a full-time career.
Washington (October 12) Hospice Foundation of America’s 2004 program, Living With Grief® : Alzheimer’s Disease, won the 2005 Health & Medical Media Award in the competition’s Alzheimer’s & Dementia category. This year marked the 31st year of competition for the prestigious International Health & Medical Media Awards, also known as the FREDDIE Awards.
The awards program, sponsored by medical publisher MediMedia, is open to organizations producing videos, films, DVDs, CD-ROMs, and Web sites addressing health and medical issues for both consumers and health care professionals.
HFA’s 11th Annual National Bereavement Teleconference, moderated by Cokie Roberts of ABC News, features a multidisciplinary panel of experts who discuss what is known medically about the diagnosis, progression, and treatment of Alzheimer’s.
The program also:
· explores some innovative programs for patients and caregivers coping with Alzheimer’s;
· focuses on the particular grief issues that patients and families face during the course of this illness; and
· examines the challenges and opportunities that Alzheimer’s disease presents to clinicians, caregivers, hospice workers, and policy advocates.
Living With Grief® : Alzheimer’s Disease offers insight and practical advice to all who are involved in the care of patients with Alzheimer’s disease and other dementias. This program is available both in VHS or DVD in its entire 2 ½-hour length or in an edited one-hour version.
Winning this prestigious award in the healthcare industry is comparable to winning the motion picture industry's Academy Award (Oscar).
Hospice Foundation of America’s 2003 program, Living With Grief: Coping With Public Tragedy and its Web site, www.hospicefoundation.org, were also honored as finalists in the respective /Coping/ and/ Web site /categories. Finalists in the competition included CNN Productions, Home Box Office, and WebMD Health.
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Hospice Foundation of America exists to help those who cope personally or professionally with terminal illness, death and the process of grief and bereavement.”
2nd International Forum on Pain Medicine: Medical Specialties meet Pain Medicine
Sponsored by the Mexican Pain Society, FEDELAT and World Institute of Pain (WIP)
May 25 - 28, 2006 Hotel Presidente Intercontinental, Guadalajara , Mexico
Date: January 21-22, 2006
Jointly Organized by:
Click on the following link to view seminar brochure:
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Until next month!
William Farr, PhD, MD
Clearing House Program - Thank You Notes
Details about our Clearing House Program:
Thank you from Skopelos, Greece
Today, very appropriately on the eve of the World Day of Palliative Care, I received the Oxford Textbook of Palliative Medicine that you sent in March. I hope that you have not thought us rude for not thanking you earlier. It has taken the book a little while to get here to the island, but we are very grateful.
It has taken quite a while for us to become a legal Charity here in Greece and we are just going through the final phases now and hope to have our official Charity status by Christmas.
The need here is very great for cancer support and palliative care. There have been many people dying here supported by their families, but in great pain and with no intelligent information as regards their disease. At present there is no Hospice in Athens and the knowledge of Palliative Care in this part of Greece is very limited.
We have to be very sensitive here in a small closed Orthodox Community to be seen as supporting the families, rather than imposing western ideas, particularly in an area where people are sometimes not aware that they have cancer and the word is not often used. We have the blessing of the Priests which is enormously important and the support of many Greek families…..
Thank you again very much for the Textbook.
With very best wishes,
I was delighted to receive the Oxford Textbook yesterday which you sent in February. God bless you for your thinking of us and your generosity.
I am giving this copy to Little Hospice Hoima (LHH) who opened their first building last Tuesday. Many of our trainees in palliative medicine have placements in LHH because they are doing a lot of community work for us there and assisting many patients and families who are identified by their trained village vigilantes.
So thank you so much.
Dr. Anne Merriman, MBE, FRCP,
Dear Mrs. De Lima
Thank you very much for the Oxford Textbook of Palliative Medicine. It is a very useful and precious part of the palliative care library and palliative care information center.
Dr Nikolay Yordanov MD
Many thanks for the books we received. They have been very useful and we are planning on sending one copy of the Palliative Care Manual to the Nurses Council, since we were lucky to have received 3 copies.
Thank you very much for all books you sent to us. We use them very often. A lot of information gained from them we share with our colleagues. Also we use them in preparing the lectures to teach our family doctors.
Many thanks indeed for the copy of the Oxford Textbook of Palliative Medicine and materials, including copies of Palliative Care in the Developing World. We are delighted to receive them; we will make sure that the material is readily available to students as well as our academic and clinical staff.
John D. Vince
William Farr, PhD, MD
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