[Children living with life-limiting conditions: practices and needs in France]

In France, nearly 600 children, aged 1-14 years, die from chronic diseases every year. A law passed the 22nd of April 2005 provides the legal framework for end-of-life situations. However, is this law and the position adopted by the scientific pediatric societies known and applied by pediatricians dealing with these children at the end of life? Our objective was to describe the current practices and needs, an essential preliminary assessment for the development of shared concepts among pediatricians.

A long-term study based on a qualitative and semi-quantitative questionnaire was conducted on pediatricians throughout the French academic hospitals via interviews.

A 25.2% response rate was obtained. All of the pediatric disciplines were affected by end-of-life care for children. Decisions for limitation of treatment conformed to a collegial process in 88.9%; 48.1% of the pediatricians expressed the need for dedicated beds for these children. The Léonetti law appeared to be diversely known and appreciated: 19.6% declared no or poor knowledge of this law, 23.5% were neutral in their response, 15.7% considered its significant progress, and 41.2% criticized its insufficiencies. However, for most of the doctors interviewed, this law supplied a legal framework, but some doctors emphasized the challenges in applying it to pediatrics: vagueness of the law regarding the parents and the desires of the minor child and insufficiency in developing pediatric palliative care. Above all, some ignorance or confusion in the terms used was notable.

Our survey, emphasizing the difficulties encountered by pediatricians dealing with dying children and their families, emphasizes the need for concepts shared by the entire profession; this reflection could define the terms used in the debate.