Pediatric palliative care in Brazil: reflections on end of life based on geographic mapping.

Abstract

Introduction: In Brazil, a country of continental dimensions, the lack of services in the different regions is a major barrier that prevents patients from accessing Pediatric Palliative Care (PPC). If accessing PPC is already challenging, end-of-life care for these patients may also be difficult. Therefore, this study is based on a recent mapping effort, aimed at reflecting on the end-of-life care for children in Palliative Care in Brazil.

Method: Descriptive, cross-sectional study, and online survey research, based on a larger study of Palliative Care Network.

Results: The final sample comprised 90 Pediatric Palliative Care services, which proved to be unevenly distributed across the country. Many services lack a minimum team, 40% face difficulties accessing opioids, and one-third do not provide bereavement care.

Discussion: There should be more services with better distribution across the country, and a minimum team should be required to provide adequate care for children and adolescents. Strategies to improve symptom control and grief support should be introduced.

Conclusions: It is concluded that continuing education and the inclusion of relevant topics in health courses are necessary. Additionally, health service managers must expand their focus to address these issues effectively.