End-of-life care of children and adolescents with multiple disabilities in social medical institutions

Objectives.- To identify end-of-life care given to children and adolescents with multiple disabilities in social medical institutions, to show the resources that are available in palliative care and those still requested by their staff, to expose the main issues encountered by professionals. Methods.- Multicentric and retrospective study conducted in 2015 in France among 258 social medical institutions authorized to host children and adolescents with multiple disabilities. Results.- One hundred and eight institutions responded to the survey (response rate: 42 %). As for 74 % of them, there is no mention of end-of-life care in the building institution project. To every children and adolescents supported in these institutions, 21 % (n=508) had advanced progressive, non-curable illness and somatic fragility, 8 % were at the end of their life. In half of those institutions, there were no professionals trained in palliative care; 43 % stated that their staff should be more trained. Over the last couple of years, 55 % requested the help of a mobile palliative care team, and 31 % turned to their local resource team in pediatric palliative care. Ninety-two deaths have been listed and 21 children were subjected to limiting life-sustaining treatment decisions. Conclusion.- The end-of-life is a reality in the surveyed institutions. However, professionals are poorly trained. They are not prepared enough to assist children in the end-of-life. Support team should be systematically applied and institutions must support professionals to overcome these delicate situations. (C) 2016 Elsevier Masson SAS. All rights reserved.