Mechanical Ventilation In Children With Life-limiting Conditions

Mechanical Ventilation In Children With Life-limiting Conditions

Gaboli M; Pecellin ID; Garrido MM; Cantero EQ; Carro CC; Rodriguez LMR; Valencia JPG

10.1183/13993003.congress-2016.OA248

European Respiratory Journal

2016

Artificial Ventilation; Adult; Cancer Epidemiology; Cerebral Palsy; Child; Chromosome Disorder; Cognitive Defect; Controlled Study; Cross-sectional Studies; Cross-sectional Study; Death; Follow Up; Human; Lung Disease; Major Clinical Study; Mucopolysaccharidosis; Neuromuscular Disease; Only Child; Palliative Care; Palliative Therapy; Quality Of Life; Respiration Artificial; Respiratory Insufficiency; Spain; University Hospital; Ventilators Mechanical; Young Adult

Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim was to review palliative indication of home mechanical ventilation (HMV) in Southwestern Spain. Methods: Descriptive cross-sectional study including pediatric patients (aged 0 to 18 years) who were being taken care by the HMV program at the University Hospital Virgen del Rocio in Seville between 2000 and 2015. Results: A total of 78 patients were analyzed, 22 on invasive ventilation (10 with 24 hours/day) and 56 on no invasive ventilation. Duration of HMV varies from 2 days to 15 years. According to standards for pediatric palliative care in Europe, 12 patients suffered from life-threatening illness, (group 1; 4 cancer, 8 no progressive lung disease), 17 had conditions in which premature death is inevitable (group 2; 3 mucopolysaccharidosis, 14 malformative syndrome or chromosomopathy), 38 had progressive conditions without curative options (group 3; 30 neuromuscular diseases, 8 neurological progressive disease of unknown origin), 7 had irreversible but not progressive conditions (group 4; cerebral palsy). When HMV was started 17 patients had severe cognitive impairment, and HMV was indicated to improve quality of life by reducing hospital visits. During follow up, 3 patients died and 3 were weaned from HMV (group 1). Only 4 patients were included in a pediatric palliative care program. Conclusions: Up to 95% of patients with HMV can benefit from palliative care. HMV in children with chronic conditions aims to ameliorate their quality of life, but may pose ethical dilemmas.

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