title: The outcome of treatment limitation discussions in newborns with brain injury.
abstract: BACKGROUND
  Most deaths in severely brain-injured newborns in neonatal intensive care units (NICUs) follow discussions and explicit decisions to limit life-sustaining treatment. There is little published information on such discussions.
  
  
  OBJECTIVE
  To describe the prevalence, nature and outcome of treatment limitation discussions (TLDs) in critically ill newborns with severe brain injury.
  
  
  METHODS
  A retrospective statewide cohort study.
  
  
  METHODS
  Two tertiary NICUs in South Australia.
  
  
  METHODS
  Ventilated newborns with severe hypoxic ischaemic encephalopathy and periventricular/intraventricular haemorrhage (P/IVH) admitted over a 6-year period from 2001 to 2006.
  
  
  METHODS
  Short-term outcome (until hospital discharge) including presence and content of TLDs, early childhood mortality, school-age functional outcome.
  
  
  RESULTS
  We identified 145 infants with severe brain injury; 78/145 (54%) infants had documented TLDs. Discussions were more common in infants with severe P/IVH or hypoxic-ischaemic encephalopathy (p<0.01). Fifty-six infants (39%) died prior to discharge, all following treatment limitation. The majority of deaths (41/56; 73%) occurred in physiologically stable infants. Of 78 infants with at least one documented TLD, 22 (28%) survived to discharge, most in the setting of explicit or inferred decisions to continue treatment. Half of long-term survivors after TLD (8/16, 50%) were severely impaired at follow-up. However, two-thirds of surviving infants with TLD in the setting of unilateral P/IVH had mild or no disability.
  
  
  CONCLUSIONS
  Some critically ill newborn infants with brain injury survive following TLDs between their parents and physicians. Outcome in this group of infants provides valuable information about the integrity of prognostication in NICU, and should be incorporated into counselling.
authors.affiliation: Women's and Children's Hospital, Adelaide, Australia Flinders Medical Centre, Adelaide, Australia.
authors.forename: Marcus
authors.initials: M
authors.lastname: Brecht
authors.affiliation: Women's and Children's Hospital, Adelaide, Australia Faculty of Philosophy, Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK Robinson Institute, Discipline of Obstetrics and Gynaecology, University of Adelaide, Adelaide, Australia John Radcliffe Hospital, Oxford, UK.
authors.forename: Dominic J C
authors.initials: DJ
authors.lastname: Wilkinson
mesh_terms: D002543:Cerebral Hemorrhage / Q000453:epidemiology / Q000628:therapy*; D002658:Developmental Disabilities / Q000453:epidemiology; D004992:Ethics, Medical; D023261:Glasgow Outcome Scale; D006801:Humans; D020925:Hypoxia-Ischemia, Brain / Q000453:epidemiology / Q000628:therapy*; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal / Q000941:ethics*; D018743:Perinatal Care / Q000941:ethics / Q000379:methods; D011368:Professional-Family Relations; D011379:Prognosis; D012189:Retrospective Studies; D013021:South Australia / Q000453:epidemiology; D016019:Survival Analysis; D016896:Treatment Outcome; D028761:Withholding Treatment / Q000941:ethics*
keywords: Ethics; Neonatology; Palliative Care