Publication
Context of death and end-of-life decision-making in paediatric patients with neurological conditions
Pejenaute I, Murguiondo M, Irazabal G, Sarriegui A, Carmona-Nunez A, Lopez-Bayon J, Echaniz J, Aguirre I · Medicina Paliativa · 2023
Introduction and objectives: Death in children with neurological disease is usually complex and requires an interdisciplinary approach. Our aim was to describe the context of death in children with neurological disease according to the underlying condition. Material(s) and Method(s): A single-centre retrospective study of the deaths of patients under 18 years of age between 2011-2021. Demographic data, context of death, and details about withholding or withdrawing treatment (WWT) and palliative care (PC) were obtained by reviewing the medical records. We compared the context of death between patients with acute neurological disease (PAD) and chronic neurological disease (PCD). Result(s): One hundred and fifty-two patients died (38.8 % were PAD [hypoxic-ischaemic encephalopathy, cranioencephalic trauma...] and 61.2 % were PCD [brain tumour, cerebral palsy/encephalopathy, metabolopathy...]). PAD died at a younger age (0.02 vs. 2.7 years), during shorter admissions (3 vs. 14 days) and in intensive care units more frequently (96.6 % vs. 41.9 %) than PCD. Among patients with follow-up by PC teams, 96 % died in the hospital ward or at home. WWT was performed in 90.3 % of PCD, mainly by witholding treatment, and in 59.3 % of PAD, mostly by withdrawing treatment. PCD most frequently had PC coding, follow-up by PC teams and advance care planning (ACP) recorded. Nearly all patients on PC under follow-up had PC coding and ACP recorded. Conclusion(s): Most patients with neurological disease died from chronic conditions, in intensive care units, and after WWT. Follow-up of PCD by PC teams may help to identify PC needs, record ACP, and allow death in the place chosen by the family. Copyright © 2023 Sociedad Espanola de Cuidados Paliativos. All rights reserved.
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