Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands

J Pediatr. 2010 Jan;156(1):33-7. doi: 10.1016/j.jpeds.2009.07.019.


Objective: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs).

Study design: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU during 12 months in 4 NICUs (Chicago, Milwaukee, Montreal, and Groningen). We categorized deaths using a 2-by-2 matrix and determined whether mechanical ventilation was withdrawn/withheld and whether the child was dying despite ventilation or physiologically stable but extubated for neurological prognosis.

Results: Most unstable patients in all units died in their parents' arms after mechanical ventilation was withdrawn. In Milwaukee, Montreal, and Groningen, 4% to 12% of patients died while receiving cardiopulmonary resuscitation. This proportion was higher in Chicago (31%). Elective extubation for quality-of-life reasons never occurred in Chicago and occurred in 19% to 35% of deaths in the other units. The proportion of DR deaths in Milwaukee, Montreal, and Groningen was 16% to 22%. No DR deaths occurred in Chicago.

Conclusions: Death in the NICU occurred differently within and between countries. Distinctive end-of-life decisions can be categorized separately by using a model with uniform definitions of withholding/withdrawing mechanical ventilation correlated with the patient's physiological condition. Cross-cultural comparison of end-of-life practice is feasible and important when comparing NICU outcomes.

MeSH terms

  • Canada
  • Cross-Cultural Comparison
  • Decision Making*
  • Female
  • Gestational Age
  • Humans
  • Infant, Newborn
  • Infant, Newborn, Diseases / mortality*
  • Intensive Care Units, Neonatal
  • Male
  • Netherlands
  • Respiration, Artificial
  • Terminal Care
  • United States
  • Withholding Treatment / statistics & numerical data*