P. Le Coz

Projets de naissance en soins palliatifs : un domaine de la périnatalité à construire

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

L’enfant en fin de vie. Enquête sur les pratiques et les besoins relatifs à la prise en charge de l’enfant en fin de vie liée à une pathologie chronique

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

Justice et équité dans la décision médicale

Resume Toute decision medicale doit rendre justice a celui qui souffre et qui considere sa souffrance comme un non-sens. Cet imperatif se decline selon trois principes ethiques universels regissant la relation medecin-malade : autonomie de la personne, meme si c’est un jeune enfant, bienfaisance, non-malfaisance. L’adhesion a ces principes donne a la decision medicale sa dimension ethique. Elle implique que le medecin fasse le meilleur usage des emotions ressenties face a son patient et/ou ses parents : respect de l’autonomie, compassion bienfaisante et crainte de malfaisance dans les gestes de diagnostic et de soins. Si un pediatre ressent ces trois affects de facon harmonieuse, son attitude est a la hauteur de l’imperatif de justice qui est au fondement de l’ethique. Mais la realite est souvent plus complexe, source d’emotions contradictoires et, in fine , d’angoisse. Pourtant, le benefice de cette angoisse est d’alerter sur la necessite de continuer a chercher la bonne decision. La revision emotionnelle consistant en une meta-analyse des donnees objectives et subjectives du probleme, est une aide precieuse a l’etablissement d’un compromis de justice. Enfin, pour etre juste, le medecin doit inclure dans les criteres de sa decision le souci d’equite, c’est-a-dire d’une repartition equitable des biens et des services de soins. Ce souci se heurte malheureusement a des facteurs geopolitiques, socio-economiques et culturels qui varient beaucoup avec l’environnement et risquent d’alterer une decision medicale et ethique optimale. Le medecin ne peut regler seul ces problemes mais doit les connaitre pour participer a leur gestion, meme si elle est politique.