Outcomes and factors influencing care decisions in life-threatening fetal and neonatal anomalies

Objective A retrospective chart review was undertaken to describe the outcomes following the diagnosis of a life-threatening fetal and neonatal anomaly. Study Design Criteria for a life-threatening anomaly included genetic conditions, renal and pulmonary diseases, central nervous system anomalies (CNS), and cardiac defects. Information that could impact decision making was collected from provincial databases Results 176 patients met the inclusion criteria. The majority of the diagnoses were in the genetic and CNS categories. 58% (n=103) decided to terminate the pregnancy. When a live birth occurred (n=39), the mean length of survival was 13.5 days (range 1-156 days), with one death occurring at home. Conclusions Ethnicity and geographical factors were associated with the decision to terminate a pregnancy. The involvement of the palliative care service was associated with decreased interventions. Further research to determine the needs of families would be helpful in identifying program priorities in perinatal palliative care.