End-of-life decisions in pediatric intensive care. Recommendations of the Italian Society of Neonatal and Pediatric Anesthesia and Intensive Care (SARNePI)

End-of-life decisions represent one of the most complex and challenging issues in pediatric intensive care. These recommendations aim to offer Italian pediatric intensive care unit (PICU) teams a framework for the end-of-life decision-making process. The paper proposes a process based on the principle that the use of a diagnostic or therapeutic tool must comply with a 'criterion of proportionality'. Appropriately informed parents, as natural interpreters and advocates of the best interests of their child, can contribute in assessing the burdensomeness of the treatment and determining its proportionality. The decision to limit, withdraw or withhold life-sustaining treatments considered disproportionate represents a clinically and ethically correct choice. This decision should be made (a) collectively by PICU team and the other caregivers, (b) with the explicit involvement of parents, and (c) noting in the patient's clinical record the decisions taken and the reasons behind them. The withdrawing or withholding of life support can never entail the abandonment of the patient nor the withdrawal of any therapy aimed at treating any form of suffering. No action aimed at deliberately hastening the death of the patient is ever acceptable. These recommendations advocate a decision as far as possible shared by patient (whenever feasible), parents and caregivers. Ensuring that all involved are kept fully informed and that there is open and timely communication between them is the key to achieving this. It is the physician in charge of the patient's care and the head of the unit who bear the main responsibility for the final decision.