• Ashley Ridley, Elodie Vial-Cholley, Guillaume Robert, Florence Jounis-Jahan, Cyril Lervat, Pierre Betremieux, Marcel-Louis Viallard, Sandra Frache, and Nadine Cojean.
• Necker Enfants Malades Children's Hospital, Pediatric Palliative Care Team (A.R., M.L.V.), Paris, France. Electronic address: ashley.ridley@aphp.fr.
• J Pain Symptom Manage. 2023 Apr 1; 65 (4): 308317308-317.

ContextPalliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose several clinical and ethical challenges for health care teams and families.ObjectivesOur study aimed to describe CDS requests and practices of patients receiving specialized pediatric palliative care in France since its legalization in 2016.MethodsWe conducted a nationwide multicentric, descriptive, retrospective study using a self-report questionnaire completed by all Pediatric Palliative Care (PPC) Teams that were involved in a CDS case between January 2017 and December 2019.ResultsSix PPC teams had cared for six patients that had requested CDS, predominantly male adolescents/young adults diagnosed with a solid tumour. The refractory symptoms were diverse (pain, bleeding, and sensory loss) and always coupled with psycho-existential suffering. Each request was analyzed in multidisciplinary collegial meetings. Parental consent was always obtained regardless of age. Sedation typically required the use of multiple drugs including Midazolam (n = 5 cases), Chlorpromazine (n = 3), Ketamine (n = 2), and Propofol (n = 2). Despite close monitoring, achieving a satisfactory level of deep sedation was challenging and most patients unexpectedly awoke during CDS. Death occurred between 27 and 96 hours after induction.ConclusionManaging patient-requested CDS in pediatrics is challenging due to its rarity, multi-factorial refractory symptoms and drug tolerance despite polytherapy. Few recommendations exist to guide CDS practice for pediatricians. Further studies investigating pediatric CDS practices across various cultural and legal settings, refractory symptom management and specific pharmacology are warranted.Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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