Advertisement

Journal of Bioethical Inquiry

, Volume 15, Issue 3, pp 319–325 | Cite as

Parental Moral Distress and Moral Schism in the Neonatal ICU

  • Gabriella Foe
  • Jonathan Hellmann
  • Rebecca A. GreenbergEmail author
Critical Perspectives

Abstract

Ethical dilemmas in critical care may cause healthcare practitioners to experience moral distress: incoherence between what one believes to be best and what occurs. Given that paediatric decision-making typically involves parents, we propose that parents can also experience moral distress when faced with making value-laden decisions in the neonatal intensive care unit. We propose a new concept—that parents may experience “moral schism”—a genuine uncertainty regarding a value-based decision that is accompanied by emotional distress. Schism, unlike moral distress, is not caused by barriers to making and executing a decision that is deemed to be best by the decision-makers but rather an encounter of significant internal struggle. We explore factors that appear to contribute to both moral distress and “moral schism” for parents: the degree of available support, a sense of coherence of the situation, and a sense of responsibility. We propose that moral schism is an underappreciated concept that needs to be explicated and may be more prevalent than moral distress when exploring decision-making experiences for parents. We also suggest actions of healthcare providers that may help minimize parental “moral schism” and moral distress.

Keywords

Decision-making Parents Neonatal intensive care Moral distress Bioethics 

References

  1. Ahlborg, T., S. Berg, and J. Lindvig. 2013. Sense of coherence in first-time parents: A longitudinal study. Scandinavian Journal of Public Health 41(6): 623–629.Google Scholar
  2. Alderson, P., J. Hawthorne, and M. Killen. 2006. Parents’ experiences of sharing neonatal information and decisions: Consent, cost and risk. Social Science & Medicine 62(6): 1319–1329.Google Scholar
  3. Baumann-Holzle, R., M. Maffezzoni, and H.U. Bucher. 2005. A framework for ethical decision making in neonatal intensive care. Acta Paediatrica 94(12): 1777–1783.Google Scholar
  4. Berg, S. 2006. In their own voices: Families discuss end-of-life decision making—Part 2. Edited by E. Ahmann. Pediatric Nursing 32(3): 238–242.Google Scholar
  5. Boss, R.D., N. Hutton, L.J. Sulpar, A.M. West, and P.K. Donohue. 2008. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 122(3): 583–589.Google Scholar
  6. Brinchmann, B.S., F. Reidun, and N. Per. 2002. What matters to the parents? A qualitative study of parents’ experiences with life-and-death decisions concerning their premature infants. Nursing Ethics 9(4): 388–404.Google Scholar
  7. Caeymaex, L., C. Jousselme, C. Vasilescu, et al. 2013. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Archives of Disease in Childhood Fetal and Neonatal Edition 98(1): F26–31.Google Scholar
  8. Canadian Nurses Association. 2002. Ethical research guidelines for registered nurses, 3rd ed. Ottawa.Google Scholar
  9. Carnevale, F.A., P. Canoui, R. Cremer, et al. 2007. Parental involvement in treatment decisions regarding their critically ill child: A comparative study of France and Quebec. Pediatric Critical Care Medicine 8(4): 337–342.Google Scholar
  10. Dokken, D. 2006. In their own voices: Families discuss end-of-life decision making—Part 1. Edited by E. Ahmann. Pediatric Nursing 32(2): 173–175.Google Scholar
  11. Eden, L.M., and L.C. Callister. 2010. Parent involvement in end-of-life care and decision making in the newborn intensive care unit: An integrative review. The Journal of Perinatal Education 10(1): 29–39.Google Scholar
  12. Hamric, A.B., and L.J. Blackhall. 2007. Nurse-physician perspectives on the care of dying patients in intensive care units: Collaboration, moral distress, and ethical climate. Critical Care Medicine 35(2): 422–429.Google Scholar
  13. Hefferman, P., and S. Heilig. 1999. Giving “moral distress” a voice: Ethical concerns among neonatal intensive care unit personnel. Cambridge Quarterly of Health Ethics 8(2): 173–178.Google Scholar
  14. Jameton, A. 1984. Nursing practice: The ethical issues. Englewood Cliffs: Prentice-Hall.Google Scholar
  15. Lasiuk, G.C., T. Comeau, and C. Newburn-Cook. 2013. Unexpected: An interpretive description of parental traumas associated with preterm birth. BMC Pregnancy and Childbirth 13(Suppl 1): S13.Google Scholar
  16. Meyer, E.C., J.P. Burns, J.L. Griffith, and R.D. Truog. 2002. Parental perspectives on end-of-life care in the intensive care unit. Critical Care Medicine 31(1): 226–231.Google Scholar
  17. Molholm-Hansen, B., B. Hoff, and G. Greisen. 2003. Treatment of extremely preterm infants: Parents’ attitudes. Acta Paediatrica 92: 715–720.Google Scholar
  18. Ngai, F., and S. Ngu. 2014. Family sense of coherence and family adaptation among childbearing couples. Journal of Nursing Scholarship 46(2): 82–90.Google Scholar
  19. Payot, A., S. Gendron, F. Lefebvre, and H. Doucet. 2007. Deciding to resuscitate extremely premature babies: How do parents and neonatologists engage in the decision? Social Science & Medicine 64(7): 1487–1500.Google Scholar
  20. Steele, P., and A. Mancini. 2013. The neonatal experience—loss and grief without bereavement. Infant 9(3): 92–93.Google Scholar
  21. St Ledger, U., A. Begley, J. Reid, L. Prior, D. McAuley, and B. Blackwood. 2012. Moral distress in end-of-life care in the intensive care unit. Journal of Advanced Nursing 69(8): 1869–1880.Google Scholar
  22. Whitfield, M.F. 2003. Psychosocial effects of intensive care on infants and families after discharge. Seminars in Neonatology 8(2): 185–193.Google Scholar
  23. Williams, C., D. Munson, J. Zupancic, and H. Kirpalani. 2008. Supporting bereaved parents: Practical steps in providing compassionate perinatal and neonatal end-of-life care—A North American perspective. Seminars in Fetal and Neonatal Medicine 13(5): 335–340.Google Scholar
  24. Workman, E. 2001. Guiding parents through the death of their infant. Journal of Obstetric, Gynecologic, & Neonatal Nursing 30: 569–573.Google Scholar

Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2018

Authors and Affiliations

  • Gabriella Foe
    • 1
  • Jonathan Hellmann
    • 1
    • 2
  • Rebecca A. Greenberg
    • 1
    • 2
    Email author
  1. 1.Bioethics DepartmentThe Hospital for Sick ChildrenTorontoCanada
  2. 2.Department of PaediatricsUniversity of TorontoTorontoCanada

Personalised recommendations