title: [Neonatal palliative care at home: Contribution of the regional pediatric palliative care team].
abstract: The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.
authors.affiliation: Équipe ressource alsacienne de soins palliatifs pédiatriques, CHU de Strasbourg, 67000 Strasbourg, France. Electronic address: nadine.cojean@chru-strasbourg.fr.
authors.forename: N
authors.initials: N
authors.lastname: Cojean
authors.affiliation: Équipe ressource alsacienne de soins palliatifs pédiatriques, CHU de Strasbourg, 67000 Strasbourg, France.
authors.forename: C
authors.initials: C
authors.lastname: Strub
authors.affiliation: Service de médecine et de réanimation néonatale, CHU de Strasbourg, 67000 Strasbourg, France.
authors.forename: P
authors.initials: P
authors.lastname: Kuhn
authors.affiliation: Équipe d'accompagnement, de soins de confort et de soins palliatifs, CHU de Strasbourg, 67000 Strasbourg, France.
authors.forename: L
authors.initials: L
authors.lastname: Calvel
mesh_terms: D000015:Abnormalities, Multiple / Q000175:diagnosis / Q000628:therapy*; D000328:Adult; D003153:Community Health Services / Q000941:ethics / Q000458:organization & administration*; D017041:Ethics Committees / Q000941:ethics; D005500:Follow-Up Studies; D005602:France; D006699:Home Care Services / Q000941:ethics / Q000458:organization & administration*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D015931:Intensive Care, Neonatal / Q000941:ethics / Q000458:organization & administration*; D008297:Male; D010166:Palliative Care / Q000941:ethics / Q000458:organization & administration*; D010348:Patient Care Team / Q000941:ethics / Q000458:organization & administration*