title: Multiple Perspectives of Symptoms and Suffering at End of Life in the NICU.
abstract: BACKGROUND
  Despite technological advances in the neonatal intensive care unit, not all infants survive. Limited research has focused on infants' symptoms and suffering at end of life (EOL) from multiple perspectives.
  
  
  OBJECTIVE
  To compare retrospective parent report and electronic medical record (EMR) documentation of symptoms and to examine associations with parent perceptions of infants suffering at EOL.
  
  
  METHODS
  Bereaved parents of 40 infants (40 mothers and 27 fathers) retrospectively reported on their perceptions of infant symptoms and suffering during the last week of life. EMRs were also reviewed.
  
  
  RESULTS
  Parents were asked about their observations of 23 symptoms. Within the 27 parental dyads, mothers reported 6.15 symptoms (standard deviation = 3.75), which was not significantly different from fathers' report of 5.67 symptoms (standard deviation = 5.11). Respiratory distress, agitation, and pain were most common according to mothers and EMR, whereas respiratory distress, agitation, and lethargy were most common according to fathers. Few differences were found between mothers, fathers, and EMRs. However, missing data (range: 0%-20%) indicated that some parents had challenges assessing symptoms. Parents reported that the worst symptom was respiratory distress. In addition, parents reported moderate infant suffering, which was correlated with the total number of symptoms.
  
  
  CONCLUSIONS
  Parents demonstrate awareness of their infant's symptoms at EOL, and these observations should be valued as they closely parallel EMR documentation. However, some parents did have difficulty reporting symptoms, highlighting the importance of education.
  
  
  CONCLUSIONS
  Future larger sample research should prospectively examine parent perceptions of infant symptom burden, suffering, and associations with other infant and parent outcomes (eg, decision making and grief).
authors.affiliation: Center for Biobehavioral Health, the Research Institute at Nationwide Children's Hospital, Columbus, Ohio (Mss Shultz, Keim, and Winning, and Dr Gerhardt); College of Nursing, The Ohio State University, Columbus (Ms Switala and Dr Fortney); Department of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, Ohio (Dr Baughcum); and Departments of Pediatrics and Psychology, the Ohio State University, Columbus (Drs Baughcum and Gerhardt).
authors.forename: Emily L
authors.initials: EL
authors.lastname: Shultz
authors.forename: Mary
authors.initials: M
authors.lastname: Switala
authors.forename: Adrien M
authors.initials: AM
authors.lastname: Winning
authors.forename: Madelaine C
authors.initials: MC
authors.lastname: Keim
authors.forename: Amy E
authors.initials: AE
authors.lastname: Baughcum
authors.forename: Cynthia A
authors.initials: CA
authors.lastname: Gerhardt
authors.forename: Christine A
authors.initials: CA
authors.lastname: Fortney
mesh_terms: D000328:Adult; D001293:Attitude to Death; D003657:Decision Making; D057286:Electronic Health Records; D005220:Fathers / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D008297:Male; D009035:Mothers / Q000523:psychology*; D010146:Pain / Q000523:psychology; D010290:Parents; D012127:Respiratory Distress Syndrome, Newborn / Q000523:psychology; D012189:Retrospective Studies; D013727:Terminal Care / Q000523:psychology*