Experiences in palliative home care of infants with life-limiting conditions

The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n = 17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9 %) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0 % were treated with analgesics, 45.2 % were oxygen dependent, and 9.7 % required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75 %). In four (12.9 %) pts, palliative home care could come to an end as their conditions substantially improved.

Conclusions: Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance.