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End-of-life care in Brazilian Pediatric Intensive Care Units
Ian Teixeira E Sousa1, Cintia Tavares Cruz2, Leonardo Cavadas da Costa Soares3
1Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, Brazil; Unidade de Terapia Intensiva Pediátrica do Hospital Criança Conceição, Porto Alegre, RS, Brazil.
Insights
Most pediatric intensive care unit professionals feel unprepared for end-of-life care, preferring to withhold rather than withdraw life-sustaining treatment due to inadequate training and socio-cultural barriers.
Area of Science:
- Pediatric Intensive Care
- Palliative Care
- End-of-Life Care
Background:
- Deaths in Pediatric Intensive Care Units (PICUs) often involve forgoing life-sustaining treatment.
- End-of-life care requires compassionate, palliative approaches.
- This study examines end-of-life care in Brazilian PICUs.
Purpose of the Study:
- To assess end-of-life care topics in Brazilian PICUs.
- To understand the perspectives of a multidisciplinary team on end-of-life care.
- To identify barriers and training needs in pediatric end-of-life care.
Main Methods:
- A questionnaire with Likert-style and open-ended questions was used.
- Data collected from three PICUs in Southern and Southeastern Brazil (September-November 2019).
- 136 surveys analyzed from physicians, nurses, nurse technicians, and physiotherapists.
Main Results:
- Only 12% reported adequate end-of-life care training; 40% had none.
- Professionals were more comfortable withholding than withdrawing treatment.
- Physicians were uncomfortable with palliative extubation; oncologic teams cited specialist resistance as a barrier.
Conclusions:
- Most professionals feel unprepared for end-of-life care decisions.
- Preference for withholding over withdrawing treatment highlights training and socio-cultural barriers.
- Practices in Brazilian PICUs may differ from international standards.
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.
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