World Hospice and Palliative Care Day
The IAHPC supported organizations in ten countries to be able to develop programs to bring the concept and information about hospice and palliative care to the people, the medical professionals and the governments during World Hospice and Palliative Care Day. Several reports ( Argentina , Uruguay , The Philippines, Colombia and Brazil ) have already been published in the past two issues of this newsletter. The remaining reports are below.
Guatemala
On October 8, 2005, we celebrated our first palliative care day! After almost a year of hard work and proposals, Guatemala has just taken its first step toward being accepted in the wider world of palliative care. Also in October, a Palliative Care Unit was established in the Cancer Hospital INCAN. The Hospital has more than 45 years of experience in cancer diagnosis, prevention and treatment and now for the first time it is intimately involved in the palliative care philosophy. We usually celebrate something that has already being born or created; we don’t celebrate birthdays of an unborn person, that is why our first participation in this world celebration was aimed at the promotion of palliative care concepts and the rights of patient’s to be able to have dignity in their brave and often painful readjustment process when cancer enters their lives.
Because of this, we organized weekly meetings that were held at INCAN each Tuesday during the month prior to October 8. We had information meetings with different groups that work with our patients.
In these sessions we met separately with:
- The service people that clean and keep our patients safe, make exams, take samples and x-rays
- Our institutional people, officers, administrative and secretarial workers, who provide information and make the hospital work as a system.
- We instructed our nurses that they are important to us and for our patients because they attend to their everyday needs
- We also had a meeting with our volunteers, most of whom are cancer survivors and devote their time and compassion at the patient’s bedside listening, helping, providing attention and affection to them.
- Our last and 5th meeting was Thursday, October the 6th, with the medical and specialist staff. We also had the presence of the press and of our palliative care colleagues from San Antonio , Texas Dr. Aaron and Ms. Judy Malakoff who volunteered for three weeks to share with us their experiences with palliative care. We were very proud to announce our unit as "opened" and officially providing service since that day. We appreciate the support of the IAHPC, particularly the enthusiasm and dedication we received from Liliana De Lima, who also made it possible for me to visit as a medical observer at the MD Anderson Unit of Palliative Care and the Houston Hospice. Now that we are providing care to patients, we expect to participate again and to take part in all the celebrations in the years to come, not only as an institution, but as a nation that is running with the palliative care vision and ideals of care.
Dr. Eva Duarte MD-MA
Palliative Care Unit
INCAN
Guatemala
Moldova
For the first time, the Republic of Moldova celebrated the World Hospice and Palliative Care Day on October 8 th, 2005. Hospice “Angelus” organized several of the events dedicated to this day, thanks in part to the funding we received from the International Association for Hospice and Palliative Care (IAHPC).
A couple of days before October 8, “Euro TV”, the Chisinau station, featured a live program with the theme Hospice and Palliative Care. Dr. Isac Valerian, director of the National Association of Palliative Care in Moldova and of Hospice “Angelus” was invited to participate. The TV spectators could see and learn about what Hospice “Angelus” is doing and the people we are helping. Because it was a direct transmission, people could ask questions while we were on the air. After this program, the number of calls to the hospice from people who are in need have greatly increased. Many people did not know about the existence of hospice and palliative care in Moldova and this TV program was very helpful.
On October 8 a charity concert in the National Philharmonics of Chisinau was given with the slogan “Voices for Hospices”. Several artists and orchestras eagerly participated in this concert, including the famous Moldavian opera singers such: Maria Biesu, prim Dona of Moldova and the entire world (1998) and Mr. Nicolai Moscovici , the Jazz Band Univox, and the National Philharmonic Orchestra. Cancer patients and their relatives were invited as well as representatives of Parliament, the Ministry of Health and other official representatives.
About 16 volunteers coordinated and helped with this event. With their help we organized a small campaign “Buy a Brick” to help raise funds for our hospice building. Also, before, and after the concert, in the foyer of the National Philharmonic building, participants could buy wall-calendars and pocket calendars. The calendars were prepared by children on their first day of school on September 1, 2005; an important contribution and participation in the celebration of World Hospice and Palliative Care Day.
In the evening of October 8 th, another live TV program called “ Life in Balance” was aired. On this program doctors from the Hospice “ Angelus”, the director from the Health Ministry Department Chisinau and one cancer patient from Hospice” Angelus” participated. A lot of questions were asked by other cancer patients and guests.
At the end I’d like to say that we achieved the following:
1) We increased awareness and sensibility of the public about the problems of ill cancer patients.
2) We collected funds.
3) We celebrated World Hospice and Palliative Care Day with a very successful concert.
Alla Bodiu
Manager and Fundraiser
Hospice Angelus
Moldova
Mexico
Thanks to a grant we received from the International Association for Hospice and Palliative Care, we were able to celebrate World Hospice and Palliative Care Day activities in Mexico in several ways.
Our main objective was to create a Website for our organization and school. We were able to buy the domain name www.alpajal.org and are now actively working on the content.
The celebration of the World Day was carried out in the following way:
- Palliative Care Conferences:
- Several conferences took place in the department of geriatrics which includes family development – there were more than 80 participants in each session.
- Several conferences were given on palliative care, the rights of terminal patients, death and bereavement, euthanasia in the Mexican law and pediatric palliative care in collaboration with the Universidad Autónoma de Guadalajara (www.uag.mx/27/dolor)
- A conference was given on palliative care to the Tepic Nayarit Gerontology Society.
- Communications through the rdio:
- Two programs were aired through vital radio on channel DIF for an hour each in September and October.
- A palliative care program was carried on Radio Mariano (religiously affiliated) on the 17 th of November.
- Programs on Television and Media:
- A documentary was produced on palliative care and home care through channel 21 with repetitions three times during the week through Televisa and TVU (Universitary TV).
- A newspaper published three consecutive interviews about the World Hospice and Palliative Care Day and another on education in palliative care within the health care system. These can be seen on the website of the Universidad Autónoma de Guadalajara under section periódico 8 columnas. The last article was on Monday, 14 th of November. http://www.uag.mx/nexo/nexo.htm
- In addition to the Universidad Autonoma de Guadalajara, the ITESO (a Jesuit university) also offered courses on palliative care with the support of lic. Fabiola Montoya Martín del Campo. In addition, the program Palia joined in the Universidad de Guadalajara provided many promotional items and globes for the dissemination of the World Day. All of this was possible because of the help and support of local NGOs such as ONKOS, HOSPICE CRISTINA, and Dr. Miguel Ángel Ochoa.
- Symposium. On Friday, November 7 th, we celebrated the World Day with a symposium given jointly with the Mexican Association Against Pain, called Mexico Alleviates. Business people, directors of hospitals, college professors and lay people were invited. More than 80 people attended. The symposium was supported by two pharmaceutical companies. Several directories of palliative care programs and hospices in Guadalajara were given out. The symposium included a musical presentation and oral stories on palliative care for children. These were also published in the Periodico 8 Columnas. A new symposium, as a follow up to the World Day, has been scheduled for December 2 nd, in the Psychology School at the Universidad de Guadalajara. The website at the Universidad has a page dedicated to the celebration of the World Day in http://www.uag.mx/27/dolor/diadeldolor.htm
Dr. Gloria A. Dominguez
President
School of Pain and Palliative Care Specialists
State of Jalisco
Mexico
Venezuela
The Foundation for the Development, Support and Research for Palliative Care (Fundación Desarrollo, Apoyo e investigación a los cuidados Paliativos – FUNDAICP) coordinated the activities to celebrate World Hospice and Palliative Care Day in Venezuela .
We started to celebrate the Day one week prior to October 8 th with interviews on the radio, TV, and newspapers that have the largest circulation in Venezuela . In addition, messages were sent via the Internet to increase awareness about the importance of the World Hospice and Palliative Care Day and requesting signatures on the petition to Governments.
On October 7 th, we organized a concert with Mr. Gerry Weill, an internationally known jazz player. The event started with a brief explanation about hospice and palliative care, the reason behind the celebration of the first World Hospice and Palliative Care Day and how crucial it is that everybody collaborates and participates in supporting palliative care in the country. In addition, we requested governments and policy makers to take action to require and guarantee the provision of palliative care in Venezuela .
We are hopeful that this will generate many changes and we will continue to work to make palliative care available in our country. I am very grateful to the International Association for Hospice and palliative care (IAHPC) for the funding and support we received which enabled us to celebrate this event.
Dr. Patricia Bonilla
President FUNDAICP
Director Palliative Care Program
Instituto Oncologico Luis Razetti
Caracas, Venezuela
Cuba
This report is about the celebration of World Hospice and Palliative Care Day in Cuba.
Dr. Richard Harding (UK) an IAHPC Traveling Fellow spent several weeks in Cuba during this time – his report was published in the December, 2005 IAHPC Newsletter.
Report on the celebration of the first International Hospice and Palliative Care Day in Cuba .
Author: Dr. Iván Justo Roll
Palliative Care Team Coordinator
Dr. “Tomas Romay” Health Center
Old Havana , Cuba
The celebration of the first International Hospice and Palliative Care Day in Cuba marked an important step in the development of care for severely ill and dying patients in our country.
Cuba is a country with ample medical services: 99.1% of the population has access to a family doctor; there is a network of hospitals and medical services that guarantee access to emergency services and medical attention in cases of chronic illness, including advanced cases and cancer patients. The state ensures that all medical attention is provided free of charge. Little is known, however, among professionals, patients and families on the subject of Palliative Medicine, and equally little is known about hospice philosophy and the way it can dramatically change how a patient comes to grips with the advanced stages of cancer, and how loved ones’ pain and suffering can be relieved.
The reality of terminally ill patients in Cuba is defined largely by the patient’s own ignorance of having cancer or a terminal illness. This phenomenon indicates obvious cultural problems, but another interpretation could be the denial and fear of hearing and pronouncing the words “cancer,” “advanced illness,” or other such words that could indicate that the last stages of one’s life could be spent suffering. Without proper Palliative Care, and without the philosophy shared by hospices, modern medicine is insufficient to cover all angles of suffering faced by dying patients.
When introducing a “new” concept, ambiguous and unfamiliar to the majority, the promotion of such services can be delayed if the message is not delivered to all concerned in an appropriate manner. The promotion of palliative care services among professionals, patients, and the population at large, is a huge challenge for which the chosen date by Help the Hospices and the World Health Organization appeared to be an appropriate opportunity for us to involve everyone concerned, to allow voices to be heard, and to provide an occasion for people to reflect on these themes.
The objectives of the celebrations were to cover many areas simultaneously as an important scientific event and to attract all professionals. With these objectives in mind, during the week before the celebrations a short journey was carried out at the Dr. “Tomás Romay” Health Centre. For this event we invited, for a second time, Mrs. Jennifer Kwakwa a highly respected authority on the subject among Cubans professionals. She agreed to teach about basic principles and how to undertake palliative care for the terminally ill patient. For this occasion, Dr. Richard Harding, Researcher with the Palliative Care Department of King’s College, London , discussed his research concerning the care of terminally ill patients, which was our central theme during the event held between October 3 rd and 7 th. A total of approximately 400 professionals participated during the week which included two visits to hospitals. Many professionals were listening to and discussing the topic of palliative care for the first time, covering such themes as indications of pain, death with dignity, benevolence, autonomy, research, terminal sedation, etc.
While these interesting conferences and intense debates were underway in the small theatre at the Dr. “Tomás Romay” Health Centre, in the “Miguel Enriquez” Hospital and in the “Enrique Cabrera” Hospital, new ideas were being forged as they had been preconceived a few months earlier. The event was advertised on radio, as well as all activities to celebrate the first International Hospice and Palliative Care Day. A number of people were motivated to ask questions and to learn a bit more on the topic. Answers to their concerns served to expand other listener’s knowledge on the topic.
During the rest of the week, agreements were consolidated through programs put together by the Old Music Orchestra “Ars Longa,” the National Opera and the Ballet Flamingo Company “Aires.” The ballet company and the National Opera decided to dedicate their program to the International Hospice and Palliative Care Day. In the case of “Ars Longa”, the program was exclusively made up of songs dedicated to the care of terminally ill patients. Teresa Paz, its director, since her first interview agreed, never once wavering, to the inclusion of the celebration’s logotype as well as a discourse drawn up specifically for the occasion to be added to each program. Those brief words were a translation of the original composition by Help the Hospice to which a report was added about the attention accorded terminally ill patients in our country. This report was written by Dr.Jorge Grau, Head of the National Program on Pain Control and Palliative Care. At the end of the event all united, colleagues and musicians, to give thanks and to celebrate the fruitful initiative.
Important ideas surfaced during the course of the week, ideas on how and what to research. At the same time new research ideas were also surfacing from the presentations and meetings in hospitals, as well as from the lips of Dr. Suylleng Yee, the person responsible for education at the National Hospital . There emerged the possibility of creating virtual programs between institutions for the teaching of palliative care. At the moment, the first of those initiatives is already underway and we hope to soon be able to circulate the results of a study using the Results Evaluation Scale, translated and validated recently in Argentina, which was brought to our attention by Dr. Harding.
Although the principal page of Infomed , Cuba ’s health page, covered our celebration, and the television covered the concert, a few items were missing in this first celebration, such as the involvement of institutions and those responsible for our society, and having an impact that would transcend the rest of our country. Those are objectives towards which we will work next year.
All these activities were supported by grants awarded by the International Association for Hospice and Palliative Care (IAHPC) and Help the Hospices.
|
