Causes and Circumstances of Neonatal Deaths in 108 Consecutive Cases over a 10-Year Period at the Children’s Hospital of Lucerne, Switzerland

Abstract

Background: Neonatal deaths still represent the largest percentage of overall childhood mortality. Many deaths of neonates are preceded by end-of-life decisions; however, decision-making practices have been reported to vary widely from country to country. Objectives: To analyze principal causes and circumstances of all consecutive neonatal deaths at our institution over a 10-year period. Methods: All neonates who had died either in the delivery room (DR) or the neonatal intensive care unit (NICU) between January 1, 1997 and December 31, 2006 were identified. Demographic information, principal causes and circumstances of death were abstracted from the individual medical records. Results: There were approximately 72,000 live births in the catchment area of our center with 15,150 deliveries occurring at the Women’s Hospital of Lucerne. Of the 108 deaths identified, 29 occurred in the DR (DR mortality rate 0.2%) and 79 in the NICU (NICU mortality rate 2.3%). The majority of DR deaths occurred in the setting of primary nonintervention and were related to extreme prematurity (n = 20), lethal congenital malformations (n = 6) and trisomy 13 (n = 2). One patient with severe perinatal asphyxia died despite full resuscitative efforts. In the NICU, overall mortality rate was inversely related to gestational age (GA). Cardiovascular and respiratory system failures were the predominant causes of death in premature infants with a GA <32 weeks, whereas CNS catastrophes accounted for the majority of deaths in the more mature NICU population. End-of-life decisions were common with less than 10% of deaths occurring despite maximal intensive care. Conclusions: In our perinatal center, primary nonintervention and redirection of care are the most common circumstances of death in neonates. This reflects our belief that, apart from futility, quality-of-life considerations are an important part of decision making in neonatology.

Whole-Exome Sequencing and Whole-Genome Sequencing in Critically Ill Neonates Suspected to Have Single-Gene Disorders

“…Reported neonatal (28-d) mortality fol-lowing NICU admission varies widely from 0.8% to 6.2% (Hack et al 2005;Wilkinson et al 2006;Berger and Hofer 2009;Ray et al 2012) although this number includes the gamut of diagnoses, including extreme prematurity and sepsis. Of 23,910 recorded infant deaths, 66% were in the neonatal period, of which the leading cause was congenital malformations, deformations, and chromosomal abnormalities (20.8%) .…”

Neonatal End-of-Life Care: A Single-Center NICU Experience in Israel Over a Decade

“…Our results are in contrast to other studies that found shorter time to death when withdrawal of care was applied. 6 We believe that this approach tended to be considered relatively late during hospitalization in our NICUs, that is, only when lifesupporting treatments were determined to be ineffective and death seemed imminent, resulting in prolonging life. 20,21 The increasing documentation ofparents' thoughts and requests with regard to their dying child demonstrates, in our opinion, the effects of the change in the medical teams'approach during the past decade, leading to open and clear discussions with parents while explaining all treatment options.…”

“…23,24 Active withdrawal of treatment is common in NICUs in Europe, and half of neonatal deaths occur with this approach in the United Kingdom, 25 France, 26 the Netherlands, 27 Switzerland, 6,28,29 and Germany. 9 In a multicenter survey 7 assessing physician's end-of-life decisions in NICUs across 7 European countries, physicians from all these countries were found to have "set limits to intensive interventions," including continuation of current treatment without escalation, withholding of emergency treatment, and withholding of intensive treatment (the latter with the exception of Italy).…”

“…[2][3][4][5] However, decision-making practices have been reported to vary widely from country to country and among different institutions in the same country. [6][7][8][9] These differences are mainly related to prognostic uncertainty 10 and combine the interface between the "disease-oriented" and the "person-oriented" approaches, together with the individual case-related circumstances, namely, the family, the medical team, law, and society. 11 Over the past few years, the number of high-risk pregnancies and the resulting incidence of severely sick infants in our hospital have increased.…”

Deaths in the Neonatal Intensive Care Unit between 2002 and 2014

“…The decision-making is preceded by discussions between the medical staff and parents to reach appropriate end-of-life answers for each infant 12,[15][16][17][18][19] .…”