title: Experiences in palliative home care of infants with life-limiting conditions.
abstract: 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.
authors.affiliation: Department of Paediatric Oncology, Haematology and Clinical Immunology, Medical Faculty, Centre for Child and Adolescent Health, University of Duesseldorf, Moorenstr. 5, 40225, Duesseldorf, Germany. Michaela.Kuhlen@med.uni-duesseldorf.de.
authors.forename: Michaela
authors.initials: M
authors.lastname: Kuhlen
authors.affiliation: Department of Paediatric Oncology, Haematology and Clinical Immunology, Medical Faculty, Centre for Child and Adolescent Health, University of Duesseldorf, Moorenstr. 5, 40225, Duesseldorf, Germany. jessica.hoell@med.uni-duesseldorf.de.
authors.forename: Jessica I
authors.initials: JI
authors.lastname: Höll
authors.affiliation: Department of General Paediatrics, Neonatology and Paediatric Cardiology, Medical Faculty, Centre for Child and Adolescent Health, University of Duesseldorf, Moorenstr. 5, 40225, Duesseldorf, Germany. hemmen.sabir@med.uni-duesseldorf.de.
authors.forename: Hemmen
authors.initials: H
authors.lastname: Sabir
authors.affiliation: Department of Paediatric Oncology, Haematology and Clinical Immunology, Medical Faculty, Centre for Child and Adolescent Health, University of Duesseldorf, Moorenstr. 5, 40225, Duesseldorf, Germany. arndt.borkhardt@med.uni-duesseldorf.de.
authors.forename: Arndt
authors.initials: A
authors.lastname: Borkhardt
authors.affiliation: Department of Paediatric Oncology, Haematology and Clinical Immunology, Medical Faculty, Centre for Child and Adolescent Health, University of Duesseldorf, Moorenstr. 5, 40225, Duesseldorf, Germany. janssen@med.uni-duesseldorf.de.
authors.forename: Gisela
authors.initials: G
authors.lastname: Janßen
mesh_terms: D017028:Caregivers; D005260:Female; D005858:Germany; D006699:Home Care Services / Q000706:statistics & numerical data*; D006776:Hospitals, Pediatric; D006801:Humans; D007223:Infant; D007226:Infant Mortality; D007231:Infant, Newborn; D008297:Male; D010166:Palliative Care / Q000706:statistics & numerical data*; D000070659:Patient Comfort / Q000706:statistics & numerical data; D013727:Terminal Care / Q000706:statistics & numerical data*
keywords: Home care; Infants; Life-limiting conditions; Neonates; Palliative care