End-of-life of children at home: Exploratory study on hospital at home services and focus group of home care professionals

Objectives. - To identify palliative care practices in home care professionals taking care of children and teenagers at the end of their life and understand the difficulties. Method. - National multicentric and retrospective study conducted in 2015, addressed to all 309 French hospitals at home services and two focus groups. Results. - Eighty-nine responded (response rate: 29%). At the time of the survey, among 369 children hospitalized at home, 14% of them were at the end-of-life. More than two hospitals at home services out of five have at least one professional with paediatric expertise. Yet 35% of them sometimes refuse home based hospitalization for paediatric palliative care. When taking care of a child's end-of-life, 86% set up a formal recommendation document to the emergency services and 84% set up anticipated medical prescriptions, which were delivered in 60%. And 54% of the hospital at home services have already appealed to a regional resource team of pediatric palliative care. Focus groups met 14 professionals. According to them, the limits of home care did not in the presence of particular symptoms or in the technical care but were conditioned by the child's wishes and his relatives, carers the capacity (including emotional) anticipation, continuity of care and coordination of professionals. Conclusions. - Despite a consensus of home professionals the opportunity to accompany children at end-of-life at home, there is a diversity of practices and access to healthcare inequality. (C) 2016 Elsevier Masson SAS. All rights reserved.