In May 2016, IAHPC members from Bangladesh, Guatemala, India and Mexico received grants to travel to Buenos Aires to attend the 2nd International Conference of the International Children’s Palliative Care Network (ICPCN).
As a requirement of the scholarship, grantees are asked to give a glimpse of palliative care in their countries and how they hope to adapt some of the knowledge and experiences gained at the congress to their own settings. Here we present Myriam Rios’s report from Guatemala, followed by a selection of comments from our other traveling scholars.
Myriam Rios, Foundation Ammar Ayudando and Hospice Villa de la Esperanza, Guatemala.
Attending the 2nd ICPCN Conference: Children's Palliative Care in Buenos Aires, Argentina, was really important, both to me as an individual and to the Foundation Ammar Ayudando, which runs Hospice Villa de la Esperanza – (Hospice Village of Hope). Hospice Villa de la Esperanza is the first home in Guatemala to provide free care for young, terminally ill patients (from birth to 25 years) who have limited resources. We provide medical care and nursing care 24/7, meals, psychological and spiritual support and also cover funeral expenses and transfers back home for those who can’t afford to pay.
The Foundation Ammar Ayudando and Hospice Villa de la Esperanza were established 16 years ago. At that time I was visiting the homes of terminally ill children and young people of limited resources to support them them during this difficult time. Among other things, I discovered that they did not even have a bed to sleep in, much less to die with dignity.
In Guatemala, palliative care is not a legal right and good health coverage at a public level is poor. There is no awareness about quality of life at the end of life; there are few doctors with palliative care specialization and there are no hospices providing free care to patients with chronic degenerative disease. Although there is a health center in each region, access is poor and people have to walk many hours to get there. Moreover, most poor regions lack the basic services such as electricity, water, pharmacies, oxygen, and patients are unable to buy controlled drugs (opioids). Hospice Village of Hope is thus the best option for them and their families.
Each year, we care for about 150 patients, including newborn babies with genetic malformations and children and young people with cancer, heart disease and kidney, liver and lung problems. Patients are always accompanied by an adult family member and we invite all the family to be with them during the final stage. Our program, ‘Closing Circles’, allows our ‘little giants’ to realize their dreams. Most of them ask for things as simple as visiting the sea, eating pizza, getting married, making their First Communion or talking with the mother who abandoned them as a child. Recognizing patients’ spiritual and religious beliefs is extremely important, giving them and their families a special feeling of peace through such a difficult time. Support is provided by our multidisciplinary team of doctors, nurses, psychologist, thanatologist, pastors/priests, volunteers, kitchen, maintenance and security staff.
Attending the conference has helped me to expand my knowledge of pediatric palliative care: how best to manage pain, neonatal patients, symptoms and solutions; treatment of different chronic degenerative diseases with a life prognosis of less than six months, knowing when to use invasive methods or improve the quality of life with palliative care, the difference between euthanasia and palliative care, the importance of the multidisciplinary team, and how best to mix and use opioids. The conference reinforced the importance of spirituality and reassured me that Hospice Village of Hope is on the right track. I hope that at the next conference hospices from low-income countries may present some of their experiences.
Thank you for this tremendous support. To be part of palliative care is special, important and rewarding.
Salma Choudhury is the founder of ASHIC, the Foundation for Childhood Cancer, in Dhaka, Bangladesh. Established in 1994, the foundation’s original aim was to support children and their families during curative treatment and since 2006 it has been providing palliative care for children.
“All the sessions were very informative and the knowledge has helped me to run my organization more effectively. I co-chaired the session ‘Family and volunteers’ perspectives’ where I learnt that trained animals can be used as volunteers. Playing with volunteers like Frankie the dog when children are sick and cannot exert themselves to go outside the room to play is very comforting . . . The presentation was fascinating and I wondered whether we would be in a position to develop volunteers like Frankie in our country where human volunteers are also very difficult to motivate.”
Dr. Arunangshu Ghoshal is a palliative care physician and educator in the Department of Palliative Medicine, Tata Memorial Center, Mumbai, India.
“Something in the way I think about palliative care has changed since I came back from the conference. It was a cocktail of medical and psycho-socio-spiritual issues and more. It was spending four days in close confines with inspirational people who were dedicating their lives to ensuring as many people as possible experience the care that they need. The passion and empathy of so many of the delegates from around the world touched me in a way that I didn’t necessarily expect it would.
“It offered intensive learning experiences for physician and nurse educators who wish to become expert in the clinical practice and teaching of comprehensive, interdisciplinary palliative care.
“As an educator early in his career, it was a privilege for me to be able to learn these principles and skills through the conference. This will help me adopt these in the Indian setup and improve the scenario in my country.
This will be of immense benefit to the development and progress of this [pediatric palliative care] specialty in India.”
Dr. Yuriko Nakashima Paniagua is the Pediatric Palliative Care Coordinator at Hospital Civil “Dr. Juan I. Menchaca”, a teaching hospital in Guadalajara, Mexico, where the palliative care population has increased more than 200 percent since 2010. (She is pictured here presenting at the 2nd ICPCN Conference in Buenos Aires).
“Last year, our interdisciplinary team provided services to about 530 pediatric patients and their family members. The conference gave me the opportunity to build more international networks for education, research and training and to share our experience with other low-income countries, to learn more about bioethics at the end of life and share/compare different points of view from different parts of the word. As a health professional it's very important to have continuing education. In this great conference I could be with internationally recognized experts in pediatric palliative care and pain – that was really one of the best things of this event. They kindly shared their knowledge with all of us.”
“Thank you so much IAHPC for giving me this great opportunity to be part of such a wonderful event; please continue helping our countries because without resources like you it would be much more difficult to have quality palliative care in low-income countries.”
Read Prof. Julia Downing’s article on the 2nd ICPCN Conference in the July issue of the IAHPC Newsletter.
For reasons of space, we have published only a small selection of edited reports and comments.
To find out more about IAHPC’s Traveling Scholarships and Traveling Fellowships, please visit our website. Through these programs we support projects and individuals around the world, especially in developing countries in Africa, Eastern Europe, Asia and Latin America.