title: Neonatal deaths: prospective exploration of the causes and process of end-of-life decisions.
abstract: OBJECTIVE
  To determine the causes and process of death in neonates in Canada.
  
  
  METHODS
  Prospective observational study.
  
  
  METHODS
  Nineteen tertiary level neonatal units in Canada.
  
  
  METHODS
  942 neonatal deaths (215 full-term and 727 preterm).
  Explored the causes and process of death using data on: (1) the rates of withdrawal of life-sustaining treatment (WLST); (2) the reasons for raising the issue of WLST; (3) the extent of consensus with parents; (4) the consensual decision-making process both with parents and the multidisciplinary team; (5) the elements of WLST; and (6) the age at death and time between WLST and actual death.
  
  
  RESULTS
  The main reasons for deaths in preterm infants were extreme immaturity, intraventricular haemorrhage and pulmonary causes; in full-term infants asphyxia, chromosomal anomalies and syndromic malformations. In 84% of deaths there was discussion regarding WLST. WLST was agreed to by parents with relative ease in the majority of cases. Physicians mainly offered WLST for the purpose of avoiding pain and suffering in imminent death or survival with a predicted poor quality of life. Consensus with multidisciplinary team members was relatively easily obtained. There was marked variation between centres in offering WLST for severe neurological injury in preterm (10%-86%) and severe hypoxic-ischaemic encephalopathy in full-term infants (5%-100%).
  
  
  CONCLUSIONS
  In Canada, the majority of physicians offered WLST to avoid pain and suffering or survival with a poor quality of life. Variation between units in offering WLST for similar diagnoses requires further exploration.
authors.affiliation: Division of Neonatology, Hospital for Sick Children, Toronto, Canada Department of Paediatrics, University of Toronto, Toronto, Canada Department of Bioethics, Hospital for Sick Children, Toronto, Canada.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Hellmann
authors.affiliation: Division of Neonatology, Hospital for Sick Children, Toronto, Canada.
authors.forename: Robin
authors.initials: R
authors.lastname: Knighton
authors.affiliation: Department of Paediatrics, University of Toronto, Toronto, Canada Department of Paediatrics, Mount Sinai Hospital, Toronto, Canada.
authors.forename: Shoo K
authors.initials: SK
authors.lastname: Lee
authors.affiliation: Department of Paediatrics, University of Toronto, Toronto, Canada Department of Paediatrics, Mount Sinai Hospital, Toronto, Canada.
authors.forename: Prakesh S
authors.initials: PS
authors.lastname: Shah
mesh_terms: D001238:Asphyxia Neonatorum / Q000401:mortality; D002170:Canada / Q000453:epidemiology; D002423:Cause of Death; D002869:Chromosome Aberrations; D000066491:Clinical Decision-Making; D000013:Congenital Abnormalities / Q000401:mortality; D006801:Humans; D020925:Hypoxia-Ischemia, Brain / Q000401:mortality; D062071:Infant, Extremely Premature; D007231:Infant, Newborn; D007234:Infant, Premature; D007363:Intensive Care Units, Neonatal; D020300:Intracranial Hemorrhages / Q000401:mortality; D008171:Lung Diseases / Q000401:mortality; D010348:Patient Care Team; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data*; D011446:Prospective Studies; D047929:Term Birth; D028761:Withholding Treatment / Q000706:statistics & numerical data*
keywords: Ethics; Mortality; Neonatology; Palliative Care