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Multiple Perspectives of Symptoms and Suffering at End of Life in the NICU

Shultz, Emily L. BS; Switala, Mary BS; Winning, Adrien M. BS; Keim, Madelaine C. BA; Baughcum, Amy E. PhD; Gerhardt, Cynthia A. PhD; Fortney, Christine A. PhD, RN

Section Editor(s): Ahern, Katherine

doi: 10.1097/ANC.0000000000000385
Ethical Issues in Neonatal Care

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.

Purpose: 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/Search Strategy: 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.

Findings/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.

Implications for Practice: 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.

Implications for Research: 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).

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).

Correspondence: Christine A. Fortney, PhD, RN, 316 Newton Hall, 1585 Neil Ave, Columbus, OH 43210 (

Institution where the work occurred: The Research Institute at Nationwide Children's Hospital.

This research was supported by a grant from the Research Institute at Nationwide Children's Hospital and the Ohio State University College of Nursing Seed Grant Program. The authors would like to thank the families who generously participated in this research.

Portions of this work were presented at the Midwest Nursing Research Society conference, March 2016.

The authors declare no conflicts of interest.

© 2017 by The National Association of Neonatal Nurses