Abstract
Context
Palliative 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.
Objectives
Our study aimed to describe CDS requests and practices of patients receiving specialized
pediatric palliative care in France since its legalization in 2016.
Methods
We 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.
Results
Six 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.
Conclusion
Managing 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.
Key Words
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Article info
Publication history
Published online: December 13, 2022
Accepted:
December 7,
2022
Identification
Copyright
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
