Abstract

BackgroundThe purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit.MethodsA 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records.ResultsOne hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn.ConclusionsThe main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care.

Highlights

  • The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit

  • The present study aims to describe how EOL care in the Pediatric Intensive Care Unit (PICU) is carried out and how the implementation of palliative care has changed EOL practices in the PICU

  • Patients who died in the PICU after the life-support limitation (LSL) decision were included

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Summary

Introduction

Medical care standards in pediatrics are continuously improving. There are still situations in which a cure or an acceptable quality of life for our patients are not possible. Each case should be evaluated individually, with the decision taken by consensus among all the professionals involved in the patient’s care and the family. The objective is to reach an agreement in which life support techniques/treatments are adapted to the situation of each patient [4]. The goals of care will change to ensure comfort rather than to provide a cure, and families must be made to understand that the best care for their child is being provided [5,6,7]

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