End-of-life care in Brazilian Pediatric Intensive Care Units

• Main Authors: Ian Teixeira e Sousa (Author), Cintia Tavares Cruz (Author), Leonardo Cavadas da Costa Soares (Author), Grace van Leeuwen (Author), Daniel Garros (Author)
• Format: Book
• Published: Elsevier, 2023-07-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.
• Notes: 0021-7557; 10.1016/j.jped.2023.02.003
• Keywords: Terminal care; End-of-life care; Biomedical ethics; Palliative care; Pediatric intensive care units; Pediatrics; RJ1-570
• Source: Jornal de Pediatria, Vol 99, Iss 4, Pp 341-347 (2023)

Objective: Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment. Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures. This study aims to assess topics related to the end of life care in Brazilian pediatric intensive care units from the perspective of a multidisciplinary team. Method: The authors used a tested questionnaire, utilizing Likert-style and open-ended questions. After ethics committee approval, it was sent by email from September to November/2019 to three Pediatric Intensive Care Units in the South and Southeast of Brazil. One unit was exclusively dedicated to oncology patients; the others were mixed units. Results: From 144 surveys collected (23% response rate) 136 were analyzed, with 35% physicians, 30% nurses, 21% nurse technicians, and 14% physiotherapists responding. Overall, only 12% reported enough end-of-life care training and 40% reported never having had any, albeit this was not associated with the physician's confidence in forgoing life-sustaining treatment. Furthermore, 60% of physicians and 46% of other professionals were more comfortable with non-escalation than withdrawing therapies, even if this could prolong suffering. All physicians were uncomfortable with palliative extubation; 15% of all professionals have witnessed it. The oncologic team uniquely felt that "resistance from the teams of specialists" was the main barrier to end-of-life care implementation. Conclusion: Most professionals felt unprepared to forego life-sustaining treatment. Even for terminally ill patients, withholding is preferred over the withdrawal of treatment. Socio-cultural barriers and the lack of adequate training may be contributing to insecurity in the care of terminally ill patients, diverging from practices in other countries.