Palliative care after neonatal intensive care: Contributions of Leonetti Law and remaining challenges

• Published in: Archives de pédiatrie : organe officiel de la Société française de pédiatrie Vol. 24; no. 2; pp. 155 - 159
• Main Authors: Kuhn, P, Dillenseger, L, Cojean, N, Escande, B, Zores, C, Astruc, D
• Format: Journal Article
• Language: French; English
• Published: France 01.02.2017
• Subjects: Decision Making; Deep Sedation; France; Humans; Infant, Newborn; Intensive Care Units, Neonatal - legislation & jurisprudence; Intensive Care, Neonatal - legislation & jurisprudence; Medicin och hälsovetenskap; Palliative Care - legislation & jurisprudence; Parental Consent - legislation & jurisprudence; Professional-Family Relations; Resuscitation Orders - legislation & jurisprudence; Withholding Treatment - legislation & jurisprudence
• DOI: 10.1016/j.arcped.2016.11.012
• ISSN: 1769-664X

The 2005 enactment of the "Patients' rights and end-of-life care" act, known as the Leonetti law, has been accompanied by practical changes in the processes of withdrawal and withholding of active life-sustaining treatments. This law has also promoted the implementation of palliative care in perinatal medicine to avoid unreasonable therapeutic interventions and to preserve the dying patient's quality of life and human dignity. Recently, a new law has been voted by the French National Assembly and new reflections on the ethical aspects of the end of life in neonatal medicine should resume again within the French Society of Neonatology in the working group on ethical issues in neonatology. This is why it appears important to discuss the perceived benefits and the persistent difficulties related to the implementation of the Leonetti law in neonatology. Collegiality in the decision-making processes as well as withdrawal and withholding of life-sustaining treatments that were already present in the practices of many centers has been stipulated within a legal framework and promoted in clinical practice. It has brought serenity within perinatal nursing and medical teams. It has helped them face the always-difficult end-of-life situations with parents and deal with decision-making processes in an intense emotional climate. However, new questions inherent to the law have appeared. The most important ones concern the withholding of artificial nutrition and hydration, the time pressure in the management of the decision-making process, and the management of the duration of palliative care. Challenges remain in addressing various persistent ethical dilemmas such as the possible survival of newborns with significant brain lesions detected after the period of life-sustaining treatments that have allowed their survival. The new law carried by Mr. Clayes and Mr. Léonetti should provide answers to some of these ethical issues, but it would probably not solve all of them.