Pediatric Palliative Care, Costa Rica’s Experience

Abstract

Background: This article describes the patients and activities of the Pediatric Palliative Care and Pain Control Clinic of the National Children’s Hospital (PPCPCC NCH) in San Jose, Costa Rica Central America, founded in 1990, is the first such clinic in the country. Methods: This study includes all the children and adolescents referred to the PPCPCC NCH from January 2000 to December 2008. This is a quantitative and descriptive study. We used a simple format that included variables such as age, sex, diagnostic, place of reference, pain, and other symptoms. Results: The database initially registered a total of 1470 patients; 25 of these were excluded from the study because of incomplete information, leaving a total of 1445 registered cases for the analysis. The average number of patients admitted was 156 per year. Malignant tumor was the principal diagnosis at the time of admission, followed by central nervous system abnormalities. Pain was the most frequent symptom. Most patients were visited or examined at home and/or the pediatric palliative care day center and died in their own home. Conclusion: The initial analysis enabled us to obtain information and feedback about the work of the PPCPCC. We are now able to understand more fully the needs of pediatric palliative care in Costa Rica such as increasing the coverage of pediatric patients who require palliative care, improving our resources, further defining the criteria for admission of patients to a palliative care program, and developing standards for measuring and recording symptoms besides pain.