The experiences of end-of-life care by nurses in the pediatric intensive care unit are the subject of this systematic review. Six qualitative articles from three different countries were chosen for the review using methods from Joanna Briggs Institute. The themes discovered included the following: insufficient communication, emotional burden, moral distress from medical futility, strengthening resilience, and taking steps toward hospice. These themes are discussed in detail followed by recommendations for practice to assist nurses in their quest for a good death for their pediatric patients.
BloomerM. J.EndacottR.CopnellB.O’ConnorM. (2016). ‘Something normal in a very, very abnormal environment’—Nursing work to honor the life of dying infants and children in neonatal and pediatric intensive care in Australia. Intensive and Critical Care Nursing, 33, 5-11. doi:10.1016/j.iccn.2015.09.001
3.
BloomerM. J.O’ConnorM.CopnellB.EndacottR. (2015). Nursing care for the families of the dying child/infant in pediatric and neonatal ICU: Nurses’ emotional talk and sources of discomfort. A mixed methods study. Australian Critical Care, 28(2), 87-92.
4.
BurnsJ. P.SellersD. E.MeyerE. C.Lewis-NewbyM.TruogR. D. (2014). Epidemiology of death in the pediatric intensive care unit at U. S. teaching hospitals*. Critical Care Medicine, 42(9), 2101-2108. doi:10.1097/ccm.0000000000000498
5.
ButlerA. E.HallH.WillettsG.CopnellB. (2015). Family experience and PICU death: A meta-synthesis. Pediatrics, 136(4), e691-e975.
6.
ChernyN. I.RadbruchL. (2009). European association for palliative care (EAPC) recommended framework for the use of sedation in palliative care. Palliative Medicine, 23(7), 581-593.
7.
ColeL. (2003). Say when … end-of-life decisions in PICU. Pediatric Nursing, 29(2), 138.
8.
CookK. A.MottS.LawrenceP.JablonskiJ.GradyM. R.NortonD.. . . ConnorJ. A. (2012). Coping while caring for the dying child: Nurses’ experiences in an acute care setting. Journal of Pediatric Nursing, 27(4), e11-e21. doi:10.1016/j.pedn.2011.05.010
9.
CostelloJ.Trinder-BrookA. (2000). Children’s nurses’ experiences of caring for dying children in hospital. Paediatric Nursing, 12(6), 28.
10.
Cricco-LizzaR. (2014). The need to nurse the nurse: Emotional labor in neonatal intensive care. Qualitative Health Research, 24(5), 615-628.
11.
CurtisJ. R.EngelbergR. A. (2006). Measuring success of interventions to improve the quality of end-of-life care in the intensive care unit. Critical Care Medicine, 34(11), S341-S347.
12.
Department of Health. (2008). Better care: Better lives—Improving outcomes and experiences for children, young people and their families living with life–limiting and life–threatening conditions. Retrieved from http://eprints.uwe.ac.uk/5178/
13.
DevictorD.CarnevaleF. (2008). Improving end-of-life care in the pediatric intensive care unit. Therapy, 5(4), 387-390.
14.
DevictorD.LatourJ. M.TissieresP. (2008). Forgoing life-sustaining or death-prolonging therapy in the pediatric ICU. Pediatric Clinics, 55(3), 791-804.
15.
de WeerdW.van TolD.AlbersM.SauerP.VerkerkM. (2015). Suffering in children: Opinions from parents and health-care professionals. European Journal of Pediatrics, 174(5), 589-595.
16.
DielP. K. V.GomesG. C.XavierD. M.SalvadorM. D. S.OliveiraS. M. D. (2013). Nurses’ experiences before the death at the neonatal intensive care unit. Journal of Nursing UFPE Online, 7(4), 1081-1089.
17.
DochertyS. L.MilesM. S.BrandonD. (2007). Searching for “the dying point”: Providers’ experiences with palliative care in pediatric acute care. Pediatric Nursing, 33(4), 335.
18.
EnglerA. J.CussonR. M.BrockettR. T.Cannon-HeinrichC.GoldbergM. A.WestM. G.PetowW. (2004). Neonatal staff and advanced practice nurses’ perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants. American Journal of Critical Care, 13(6), 489-498.
19.
EpsteinE. G. (2008). End-of-life experiences of nurses and physicians in the newborn intensive care unit. Journal of Perinatology, 28(11), 771.
20.
FortneyC. A.StewardD. K. (2017). A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit. Intensive and Critical Care Nursing, 40, 57-63. doi:10.1016/j.iccn.2016.10.004
21.
Hendricks-FergusonV. L.SawinK. J.MontgomeryK.DupreeC.Phillips-SalimiC. R.CarrB.HaaseJ. E. (2015). Novice nurses’ experiences with palliative and end-of-life communication. Journal of Pediatric Oncology Nursing, 32(4), 240-252. doi:10.1177/1043454214555196
22.
HowesC. (2015). Caring until the end: A systematic literature review exploring Paediatric Intensive Care Unit end–of–life care. Nursing in Critical Care, 20(1), 41-51.
23.
KainV. J. (2013). An exploration of the grief experiences of neonatal nurses: A focus group study. Journal of Neonatal Nursing, 19(2), 80-88.
24.
LautretteA.DarmonM.MegarbaneB.JolyL. M.ChevretS.AdrieC.. . . CurtisJ. R. (2007). A communication strategy and brochure for relatives of patients dying in the ICU. New England Journal of Medicine, 356(5), 469-478.
25.
LewisS. L. (2017). Exploring NICU nurses’ affective responses to end-of-life care. Advances in Neonatal Care, 17(2), 96-105. doi:10.1097/ANC.0000000000000355
26.
MeyerE. C.RitholzM. D.BurnsJ. P.TruogR. D. (2006). Improving the quality of end-of-life care in the pediatric intensive care unit: Parents’ priorities and recommendations. Pediatrics, 117(3), 649-657.
27.
MoherD.LiberatiA.TetzlaffJ.AltmanD. G. & Prisma Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7), e1000097.
28.
MunnZ.PorrittK.LockwoodC.AromatarisE.PearsonA. (2014). Establishing confidence in the output of qualitative research synthesis: The ConQual approach. BMC Medical Research Methodology, 14(1), 108.
29.
PolikoffL. A.McCabeM. E. (2013). End-of-life care in the pediatric ICU. Current Opinion in Pediatrics, 25(3), 285-289.
30.
PrenticeT. M.GillamL.DavisP. G.JanvierA. (2017). Always a burden? Healthcare providers’ perspectives on moral distress. Archives of Disease in Childhood-Fetal and Neonatal Edition, 103(5), F441-F445.
31.
RadbruchL.PayneS. (2009). White paper on standards and norms for hospice and palliative care in Europe: Part 1. European Journal of Palliative Care, 16(6), 278-289.
32.
Runswick–ColeK. (2010). Living with dying and disabilism: Death and disabled children. Disability & Society, 25(7), 813-826.
33.
StayerD.LockhartJ. S. (2016). Living with dying in the pediatric intensive care unit: A nursing perspective. American Journal of Critical Care, 25(4), 350-356. doi:10.4037/ajcc2016251C
34.
TruogR. D.CampbellM. L.CurtisJ. R.HaasC. E.LuceJ. M.RubenfeldG. D.. . . KaufmanD. C. (2008). Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Critical Care Medicine, 36(3), 953-963.
35.
TruogR. D.MeyerE. C.BurnsJ. P. (2006). Toward interventions to improve end-of-life care in the pediatric intensive care unit. Critical Care Medicine, 34(11), S373-S379.
