By Wendy C. Gómez García, MD
Pediatric Onco-Hematologist & Palliativista, Dr. Robert Reid Cabral Children’s Hospital
Santo Domingo, Dominican Republic
In the Dominican Republic, there is no formal or continuing training in palliative care, nor is there a national program or protocol that dictates guidelines for care for these patients.
Since 1989, however, adults have been treated at the Pain Clinic of the Dr. Heriberto Pieter Oncology Institute, currently run by Dr. Gloria Castillo. Years later, in January 2012, the first pediatric palliative program in the country, called Palliative Care Program and Metronomic Therapy, was created in the oncology unit of the Dr. Robert Reid Cabral Children's Hospital, the largest pediatric tertiary care center in the Dominican Republic.
Mainstays of the center’s program
This pediatric center, which I have coordinated since its opening, currently has 390 beds. So far, we have provided specialized care to 107 terminally ill patients, done 234 palliative interventions for clinical and psycho-socio-emotional reasons, and had 204 palliative-oncological follow-up consultations. The consultations have focused on different situations, including: first- or second-line treatment for refractory disease, metastatic disease with psychosocial danger factors on aggregates, and recurrent disease with non-viable curative therapeutic option. The center’s program offers exclusive care for follow-up appointments or admissions, 24/7 emergency telephone support, metronomic chemotherapy for disease control, and psychological and socioeconomic support by the Friends Against Childhood Cancer Foundation, among others. An exclusive protocol has been created for the program, and a pain management guide has been adapted to local reality and resources.
So far, the results of this pediatric palliative care project have been presented internationally at the 2014 conference of the Latin American Association of Pediatric Oncology (SLAOP) in Puebla, Mexico, where it was awarded third place for free papers, and the 2015 International Palliative Care Network Conference, where it obtained an honorable mention.
Continuing education enhanced
Along with the program, a series of national and international conferences and talks have been launched to provide continuing medical education for general practitioners, pediatricians, and hematologists-oncologists under the logo and vision #CreatingPositiveMetastasis, which seeks to find the good in the catastrophic situation of cancer disease. By modeling a positive attitude and knowledgeable aptitude when sharing information about palliative care, we can promote resilience and help to counter the bad outcome of metastatic cancer.
First international seminar on pediatric PC and pain management
On June 11, 2019 in Santo Domingo, the 1st International Seminar on Pediatric Palliative Care and Pain Management of the Dominican Republic was held. This academic meeting brought together administrative leaders, doctors, nurses, medical students, volunteers, and residents of hematology, emergencies, and pediatrics, to improve knowledge of the concept of palliative care, basic pain management, and symptom management of cancer patients to improve the quality of life of patients facing catastrophic diseases such as cancer. The event drew international speakers: Dr. Justin Baker, coordinator of the hemato-oncology fellowship and director of the Quality of Life and Palliative Care Program at St. Jude Children's Research Hospital; Dr. Linda Marisol Bustamante, palliative pediatrician of the National Pediatric Oncology Unit (UNOP) in Guatemala and current coordinator of the pediatric commission of the Latin American Association for Palliative Care; Dr. Mildred Rondón, pediatric anesthesiologist and coordinator of the HIRRC Procedures area; psychologist Silvia de Peña; and Dr. Yamel Lizardo, pediatric oncologist at the Jesus with Children Unit of the Dr. Arturo Grullón Hospital in Santiago.
This was the first and only event of its kind in the history of Dominican pediatrics, supported by the St. Jude Children's Research Hospital, Amipharma, Pharmatech, Bio-Nuclear, Centro Indotel, and, of course, the Friends Against Childhood Cancer Foundation.
Local study on infant pain
The conference gave us the opportunity to invite Dr. Aldo Majluta Yeb and Dr. Marleni Torres Núñez to present conclusive data of the first investigation into infant pain in the Dominican Republic, carried out in the pediatric emergency department at Dr. Robert Reid Cabral.
Multiple factors breed success
This past decade, local work on pediatric cancer has shown incredible advances, achieving better quality of life and increased survival due to many factors: improved continuing education for nurses; collaborative efforts with Asociación de Hemato-Oncología Pediátrica de Centro América (AHOPCA); mentoring and support of St. Jude Children's Research Hospital; empowerment and continuous support of the society represented by FACCI (including improvement of the structure, support for increased human resources, and creation of exclusive psycho-social support); an infection control program; a committed clinical-administrative team; and, of course, the creation of a palliative care program.
Through all these strategies, the suffering of children and their families has been reduced and we hope to continue raising the quality and warmth of our future care. We will continue creating positive metastasis!!!
Learn more about the Latin American Association for Palliative Care [Asociación Latinoamericana de Cuidados Paliativos (ALCP)], listed in the IAHPC Global Database of Palliative Care Institutions and Organizations.