Abstract 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.

FUNDAMENTO: O pós-operatório de correção de cardiopatias congênitas frequentemente é acompanhado por resposta inflamatória sistêmica. OBJETIVO: Avaliar a frequência e as manifestações clínicas da síndrome de resposta inflamatória sistêmica após circulação extracorpórea (SRIS-CEC) em crianças submetidas à cirurgia cardíaca. MÉTODOS: Coorte histórico incluindo pacientes com até 3 anos de idade, submetidos à correção cirúrgica eletiva de cardiopatias congênitas com utilização de circulação extracorpórea (CEC). Foram analisados 101 pacientes por meio de critérios clínicos de disfunção de órgãos sob forma de escore, comparando-se fatores predisponentes e morbidade agregada à presença de SRIS-CEC. RESULTADOS: Foram identificados 22 pacientes (21,9%) que preencheram os critérios estabelecidos para SRIS-CEC. O sexo ou tipo de cardiopatia não diferiu entre os grupos (p =NS). Pacientes com SRIS-CEC (comparados aos pacientes sem SRIS-CEC) apresentavam idade média menor (6,8 ± 5,5 vs. 10,8 ± 5,1 meses, p < 0,05), menor peso (5,3 ± 1,9 vs. 6,9 ± 2,0 quilogramas, p < 0,05), maior tempo CEC (125,1 ± 49,5 vs. 93,9 ± 33,1 minutos, p < 0,05). Observou-se respectivamente maior tempo em mediana de ventilação mecânica (120,0 vs. 13,0 horas, p < 0,05), maior tempo de internação em unidade de cuidados intensivos (UCI) (265,0 vs. 107,0 horas, p < 0,05) e internação hospitalar (22,0 vs. 10,0 dias, p < 0,05). Em análise multivariada, maior peso (OR = 0,68, p = 0,01) foi identificado como fator de proteção. CONCLUSÃO: Os critérios clínicos adotados identificaram um grupo de risco para SRIS-CEC. Esse grupo tem como fatores predisponentes: menor peso e maior tempo de CEC. Pacientes com SRIS-CEC permanecem maior tempo em ventilação mecânica, internados em unidade de cuidados intensivos e em hospital.

BACKGROUND: the postoperative period of congenital cardiomyopathies correction is frequently accompanied by systemic inflammatory response. OBJECTIVE: To assess the frequency of occurrence and clinical manifestations of the systemic inflammatory response syndrome after cardiopulmonary bypass (SIRS-CPB) in children submitted to cardiac surgery. METHODS: Historical cohort study including patients up to 3 years old that were submitted to elective corrective surgeries for congenital cardiopathies with cardiopulmonary bypass (CPB). A total of 101 patients were assessed by means of clinical criteria of organ dysfunction through score tests, as comparing predisponent factors and aggregated morbidity to the presence of SIRS-CPB. RESULTS: Twenty-two patients (21.9%) fulfilled the criteria for SIRS-CPB. The sex or type of cardiopathy did not differ between groups (p = NS). Patients diagnosed with SIRS-CPB (compared to patients without SIRS-CPB) presented lower mean age (6.8 ± 5.5 versus 10.8 ± 5.1 months, p < 0.05), lower weight (5.3 ± 1.9 versus 6.9 ± 2.0 kg, p < 0.05), and longer CPB duration (125.1 ± 49.5 versus 93.9 ± 33.1 minutes, p < 0.05). Longer median duration of mechanical ventilation (120.0 versus 13.0 hours, p < 0.05), longer stay in Intensive Care Unit (ICU) (265.0 versus 107.0 hours, p < 0.05) and in hospital (22.0 versus 10.0 days, p < 0.05) were observed. In the multivariate analysis, higher weight (OR = 0.68, p = 0.01) was identified as a protection factor. CONCLUSION: The adopted clinical criteria identified a risk group for SIRS-CPB, which presented lower weight and longer CPB duration as predisponent factors. Patients with SIRS-CPB remain in mechanical ventilation, in ICU and in hospitalization for a longer period of time.

FUNDAMENTO: El postoperatorio de corrección de cardiopatías congénitas está acompañado frecuentemente por una respuesta inflamatoria sistémica. OBJETIVO: Evaluar la frecuencia y las manifestaciones clínicas del síndrome de respuesta inflamatoria sistémica tras la circulación extracorpórea (SRIS-CEC) en niños sometidos a una cirugía cardiaca. MÉTODOS: Cohorte histórica de pacientes con hasta 3 años de edad, sometidos a la corrección quirúrgica electiva de cardiopatías congénitas con utilización de circulación extracorpórea (CEC). Fueron analizados 101 pacientes mediante criterios clínicos de disfunción de órganos bajo forma de escore, comparando factores predisponentes y morbilidad agregada a la presencia de SRIS-CEC. RESULTADOS: Fueron identificados 22 pacientes (21,9%) que cumplieron los criterios establecidos para el SRIS-CEC. El sexo o tipo de cardiopatía no difirió entre los grupos (p =NS). Pacientes con SRIS-CEC (comparados a los pacientes sin SRIS-CEC) presentaban un menor promedio de edad (6,8 ± 5,5 vs 10,8 ± 5,1 meses, p < 0,05), menor peso (5,3 ± 1,9 vs 6,9 ± 2,0 kilogramos, p < 0,05), mayor tiempo de CEC (125,1 ± 49,5 vs 93,9 ± 33,1 minutos, p < 0,05). Se observó respectivamente mayor tiempo promedio de ventilación mecánica (120,0 vs 13,0 horas, p < 0,05), mayor tiempo de internación en unidad de cuidados intensivos (UCI) (265,0 vs 107,0 horas, p < 0,05) e internación hospitalaria (22,0 vs 10,0 días, p < 0,05). En el análisis multivariado, el mayor peso (OR = 0,68, p = 0,01) fue identificado como factor de protección. CONCLUSIÓN: Los criterios clínicos adoptados identificaron un grupo de riesgo para SRIS-CEC. Ese grupo tiene como factores predisponentes: menor peso y mayor tiempo de CEC. Pacientes con SRIS-CEC permanecen mayor tiempo en ventilación mecánica, internados en unidad de cuidados intensivos y en hospital.