La loi dite « Léonetti » prévoit le recours aux soins palliatifs (SP). Très peu de données françaises sont disponibles sur cette pratique nouvelle en néonatologie.

Décrire et évaluer la pratique des SP au nouveau-né (motifs d’entrée, modalités) et son évolution dans le temps.

Étude observationnelle ambispective avec inclusion de toutes situations de SP en néonatologie. Analyses, quantitative et qualitative, des données recueillies systématiquement. Comparaison entre deux périodes P1 (2006–2007) et P2 (2008–2010).

Inclusion de 93 nouveau-nés en SP pour complications de la prématurité (36/93–39 %), encéphalopathie anoxo-ischémique (19/93–20,5 %), syndromes polymalformatifs (8/93–8,5 %), cardiopathies sévères (8/93–8,5 %), causes diverses (22/93–23,5 %). Le nombre d’entrée en SP/nombre de naissance et le nombre de décès après SP/nombre de décès en néonatologie sont restés stables. En cas de diagnostic prénatal (n=31), une augmentation des « projets de naissance en SP » (13/22 en P2 vs 1/9 en P1 ; p=0,02) a été observée. Un arrêt des thérapeutiques actives et une limitation des gestes de soins/surveillance ont été plus fréquents en P2 vs P1, respectivement 37/59 vs 12/34 (p=0,02) et 39/59 vs 14/34 (p=0,03). La titration des antalgiques de palier III était élevée et stable sur les 2 périodes, mais l’évaluation systématique de la douleur semblait plus fréquente en P2 (81,6 % vs 64,5 %, p=0,085).

Un nombre non négligeable de nouveau-nés atteints d’affections diverses est concerné par les SP. Malgré son introduction récente en néonatologie, la pratique des SP évolue notablement, majoritairement dans le cadre de la loi.

The “Patients’ rights and end-of-life care” act known as “Leonetti's Law” promulgated in 2005 has promoted the use of palliative care to avoid unreasonable obstinacy when life-sustaining treatment appears disproportionate. Very little is known about this new practice for newborns in French neonatal units.

To describe and evaluate the practice of palliative care in the newborn (mode of entry, characteristics, and modalities) and its evolution over time.

Ambispective observational study conducted in a level III neonatal center. We included all newborns presenting conditions for which palliative care was introduced. Quantitative and qualitative analyses of routinely collected data, recorded from medical and nursing charts. We compared the recorded data between periods P1 (2006–2007) and P2 (2008–2010) using the Chi² test to assess changes over time.

A total of 93 newborns benefited from palliative care during the study period. The main medical conditions motivating palliative care initiation in the newborns were severe complications of prematurity (36/93, 39%), anoxic-ischemic encephalopathy (19/93, 20.5%), severe malformations (8/93, 8.5%), severe congenital heart disease (8/93, 8.5%), and other various etiologies (22/93, 23.5%). Both the number of newborns in palliative care/total number of births and the number of deaths after palliative care/total number of neonatal deaths remained stable. In case of prenatal diagnosis (n=31), there was an increase in the number of “palliative care from birth projects” (13/22 in P2 vs. 1/9 in P1, P=0.02). Collective meetings during the decision process were significantly more frequently reported in the infants’ charts in P2 (48/59 in P2 vs. 18/34 in P1, P<0.01). Withdrawing and withholding life-sustaining treatment and limiting procedures of care and/or procedures of surveillance/monitoring were more frequent in P2 as compared to P1, respectively 12/34 vs. 37/59 (P=0.02) and 14/34 vs. 39/59 (P=0.03). A titration of level III analgesics treatment was high in both periods and remained stable. However, a trend toward an increase of systematic pain evaluation over time was observed (81.6% in P2 vs. 64.5% in P1; P=0.085).

A significant number of newborns affected by various pathologies undergo neonatal palliative care. Despite their recent introduction in neonatal medicine, palliative care practices have changed significantly. These practices are mostly in compliance with the “patients’ rights and end-of-life care” act promulgated in France in 2005.