title: [End-of-life in specialized medical pediatrics department: A French national survey].
abstract: OBJECTIVE
  In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources, put forward the difficulties encountered by professionals and describe end-of-life paths of children who died in these departments.
  
  
  METHODS
  This study is based on a nationwide survey conducted among all existing specialized medical pediatrics departments (onco-haematology, neurology, reanimation) in France in 2015.
  
  
  RESULTS
  Among 94 specialized medical pediatrics departments in France, 53 participated in our survey (response rate=56%). At the time of the survey, 13% of inpatients were facing the end-of-life. Regarding training, 13% of departments did not have personnel trained in palliative care and 21% did not set up any professional support. However, when taking care of a child's end of life in 2014, 77% of these departments solicited a regional resource team of pediatric palliative care. This survey helps describe 225 end-of-life paths of children decease of a terminal illness in the specialized pediatrics departments. Seventy-two percent suffered from refractory symptoms before their death, 64% were concerned by a terminal sedation and 75% by a limitation of life-sustaining treatment decision.
  
  
  CONCLUSIONS
  End-of-life care is a reality for specialized pediatrics departments. The frequency of major and refractory symptoms often requires the completion of sedation. The resources of service are acceptable but some deficiencies have been noted especially concerning training and support for caregivers, adaptation of premises or family support.
authors.affiliation: Centre national des soins palliatifs et de la fin de vie, 35, rue du Plateau, 75019 Paris, France. Electronic address: a.ravanello@onfv.org.
authors.forename: Alice
authors.initials: A
authors.lastname: Ravanello
authors.affiliation: Service de neuropédiatrie, hôpital Necker-Enfants-Malades, 149, rue de Sèvres, 75015 Paris, France; Université Paris Descartes, 12, rue de l'École-de-Médecine, 75006 Paris, France; Société française de neuropédiatrie, 41, rue Haute-de-Reculée, 49100 Angers, France.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Desguerre
authors.affiliation: Équipe régionale ressource de soins palliatifs pédiatriques, CHRU de Besançon, 2, boulevard Fleming, 25030 Besançon cedex, France; Département de soins palliatifs, CHRU de Besançon, 2, boulevard Fleming, 25030 Besançon cedex, France.
authors.forename: Sandra
authors.initials: S
authors.lastname: Frache
authors.affiliation: Université Paris Descartes, 12, rue de l'École-de-Médecine, 75006 Paris, France; Réanimation pédiatrique, hôpital Necker-Enfants-Malades, 149, rue de Sèvres, 75015 Paris, France.
authors.forename: Philippe
authors.initials: P
authors.lastname: Hubert
authors.affiliation: Département de pédiatrie, adolescents, jeunes adultes, institut Curie, 26, rue d'Ulm, 75248 Paris cedex 05, France.
authors.forename: Daniel
authors.initials: D
authors.lastname: Orbach
authors.affiliation: Observatoire national de la fin de vie, 35, rue du Plateau, 75019 Paris, France; Axe « Éthique et progrès médical », Inserm CIC 1431 neurosciences intégratives et cliniques, 2, place Saint-Jacques, 25000 Besançon, France; EA 481, université Bourgogne-Franche-Comté, 2, place Saint-Jacques, 25000 Besançon, France; Département douleur-soins palliatifs, CHRU de Besançon, 2, boulevard Fleming, 25030 Besançon cedex, France.
authors.forename: Régis
authors.initials: R
authors.lastname: Aubry
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D002983:Clinical Competence; D005602:France; D006297:Health Services Accessibility / Q000458:organization & administration; D006302:Health Services Research; D006748:Hospital Departments / Q000458:organization & administration*; D006801:Humans; D007223:Infant; D007938:Leukemia / Q000628:therapy; D009369:Neoplasms / Q000628:therapy; D010166:Palliative Care / Q000458:organization & administration; D010348:Patient Care Team / Q000458:organization & administration; D010372:Pediatrics / Q000458:organization & administration*; D011785:Quality Assurance, Health Care / Q000458:organization & administration; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000458:organization & administration*
keywords: Accompagnement de fin de vie; End-of-life accompanying; Intensive care; Neurologie; Neurology; Onco-hematology; Onco-hématologie; Pediatric palliative care; Pediatrics; Pédiatrie; Réanimation; Soins palliatifs pédiatriques