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End-of-life decisions for fragile neonates: navigating between opinion and evidence-based medicine
  1. Annie Janvier1,2,3,
  2. Barbara Farlow4,
  3. Eduard Verhagen5,
  4. Keith Barrington1
  1. 1Division of Neonatology et Centre de recherche, CHU Sainte-Justine, Montréal, Québec, Canada
  2. 2Unité de recherche en éthique clinique et partenariat patient, Clinical Ethics Unit and Palliative Care Unit, CHU Sainte-Justine, Montréal, Québec, Canada
  3. 3Bureau de l’éthique Clinique (BEC), Université de Montréal, Montréal, Québec, Canada
  4. 4Parent and Patient Representative, The DeVeber Institute for Bioethics and Social Research, Canada and Patients for Patient Safety Canada, Toronto, Ontario, Canada
  5. 5Departement of Pediatrics, University Medical Center Gröningen, University of Gröningen, Gröningen, Holland
  1. Correspondence to Dr Annie Janvier, Department of Pediatrics and Clinical Ethics, CHU Sainte-Justine, 3175 Chemin de la Côte-Sainte-Catherine, Montréal, Québec, Canada H3T 1C5; anniejanvier{at}hotmail.com

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The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs).1 Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous investigations shed some light on this topic. Durrmeyer et al2 systematically described the management of 73 delivery room deaths in the EPIPAGE-2 cohort. The vast majority of neonates had LSI withheld, at a median gestational age of 24 weeks. Pain was usually assessed: 50% of infants received comfort medication, the administration of which was not associated with the evaluation of pain but rather with the presence of gasping. Satisfaction of healthcare providers was strongly associated with the occurrence of parent-child contact, which frequently occurred. Aladangady et al3 describe the short-term outcome of LSI-limitation discussions with parents in a prospective multicentre trial in the UK (the WILST study). Half of the parents did not agree with providers and opted to continue LSI. When this occurred, it was not rare for the neonates to survive. When parents and providers agreed that LSI should be limited, neonates rarely survived.

When examining these issues, three important questions should be considered:

  1. When should limitations of LSI be considered?

  2. How can we optimise communication with parents?4

  3. How should we care for dying neonates and their families?

When should limitations of LSI be considered?

Fragile neonates can be grouped into three decision-making ‘zones’: (1) ‘Beneficial’, where LSIs are indicated because of good outcomes; …

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  • Original article
    Xavier Durrmeyer Claire Scholer-Lascourrèges Laurence Boujenah Pierre Bétrémieux Olivier Claris Micheline Garel Monique Kaminski Laurence Foix-L'Helias Laurence Caeymaex the EPIPAGE-2 Extreme Prematurity Writing Group the EPIPAGE-2 Extreme Prematurity Writing Group Elie Azria Alain Beuchée Pascal Boileau Frédérique Charlot Anaëlle Coquelin Caroline Diguisto Laurence Foix L'Hélias Pierre Kuhn Cerise Levaillant Florence Rouget Umberto Simeoni Barthélemy Tosello Patrick Truffert
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