Neonatal end-of-life decisions and ethical perspectives

  • Madjid Soltani Gerdfaramarzi ORCID PhD Candidate of Medical Ethics, Medical Ethics Department, School of Traditional Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
  • Shabnam Bazmi ORCID Mail Associate professor, Medical Ethics Department, School of Traditional Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
Ethics; Neonatal intensive care; End-of-life; Decision-making; Law.


End-of-life decisions are usually required when a neonate is at high risk of disability or death, and such decisions involve many legal and ethical challenges. This article reviewed the processes of ethical decision-making for severely ill or terminal neonates, considering controversial issues including the followings: (i) identifying primary decision makers, (ii) the role of law and guidelines, and (iii) changes in treatment controversy, law and regulations over twenty years in several European countries such as Switzerland, Germany, Italy, United Kingdom, France, the Netherlands, Sweden, and Spain. This review study conducted on accessible articles from PubMed, Google Scholar, Web of Science and Scopus databases. Based on two studies in 2016 and 1996, neonatologists reported that withholding intensive care, withdrawing mechanical ventilation or life-saving drugs, and involvement of parents in decision-makings have become more acceptable as time passes, indicative of trend change. Trend of physicians on how end the life of neonates, at risk of death, varies in different countries, and cultural factors, parents’ involvement in decisions and gestational age are factors considered in end-of-life decision-making. Future investigations continuously need to identify upcoming ethical aspects of proper decision-making.


Dombrecht L, Deliens L, Chambaere K, et al. Neonatologists and neonatal nurses have positive attitudes towards perinatal end of life decisions, a nationwide survey. Acta Paediatr. 2020; 109(3): 494-504.

Abdel Razeq NM. End-of-life decisions at neonatal intensive care units: Jordanian nurses attitudes and viewpoints of who, when, and how. J Pediatr Nurs. 2019; 44: e36-e44.

Abdel Razeq NM. Physicians’ standpoints on end-of-life decisions at the neonatal intensive care units in Jordan. J Child Health Care. 2019; 23(4): 579-95.

Saigal S, Doyle LW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet. 2008; 371(9608): 261-9.

Catlin A, Brandon D, Wool C, Mendes J. Palliative and end-of-life care for newborns and infants: from the National Association of Neonatal Nurses. Adv Neonatal Care. 2015; 15(4): 239-40.

Russo F, Van Mieghem T, Deprest J. Fetal medicine, fetal anaesthesia, and fetal surgery. In: Oxford Texbook of Obstetric Anaesthesia. UK: Oxford University Press; 2016.

Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol. 2002; 22(3): 184-95.

Levin BW. International perspectives on treatment choice in neonatal intensive care units. Social Science & Medicine. 1990; 30(8): 901-12.

Ryan CA, Byrne P, Kuhn S, Tyebkhan J. No resuscitation and withdrawal of therapy in a neonatal and a pediatric intensive care unit in Canada. J Pediatr. 1993; 123(4): 534-8.

Kelly NP, Rowley SR, Harding JE. Death in neonatal intensive care. Journal of Paediatrics and Child Health. 1994; 30(5): 419-22.

Bilgen H, Topuzoglu A, Kuscu K, Altuncu E, Özek E. End-of-life decisions in the newborn period: attitudes and practices of doctors and nurses. Turk J Pediatr. 2009; 51(3): 248-56.

Wall SN, Partridge JC. Death in the intensive care nursery: physician practice of withdrawing and withholding life support. Pediatrics. 1997; 99(1): 64-70.

de Leeuw R, de Beaufort AJ, de Kleine MJ, van Harrewijn K, Kollée LA. Foregoing intensive care treatment in newborn infants with extremely poor prognoses. a study in four neonatal intensive care units in the Netherlands. J Pediatr. 1996; 129(5): 661-6.

van der Heide A, van der Maas PJ, van der Wal G, et al. Medical end-of-life decisions made for neonates and infants in the Netherlands. Lancet. 1997; 350(9073): 251-5.

Cuttini M, Kaminski M, Saracci R, de Vonderweid U. The EURONIC project: a European concerted action on information to parents and ethical decision making in neonatal intensive care. Paediatr Perinat Epidemiol. 1997; 11(4): 461-74.

McHaffie HE, Cuttini M, Brölz-Voit G, et al. Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe. J Med Ethics. 1999; 25(6): 440-6.

Cuttini M, Nadai M, Kaminski M, et al. End-of-life decisions in neonatal intensive care: physicians' self-reported practices in seven European countries. EURONIC study group. Lancet. 2000; 355(9221): 2112-8.

Rebagliato M, Cuttini M, Broggin L, et al. Neonatal end-of-life decision making: physicians' attitudes and relationship with self-reported practices in 10 European countries. JAMA. 2000; 284(19): 2451-9.

Schneider K, Metze B, Bührer C, et al. End-of-life decisions 20 years after EURONIC: Neonatologists’ self-reported practices, attitudes, and treatment choices in Germany, Switzerland, and Austria. J Pediatr. 2019; 207: 154-60.

Cuttini M, Casotto V, Kaminski M, et al. Should euthanasia be legal? an international survey of neonatal intensive care units staff. Arch Dis Child Fetal Neonatal Ed. 2004; 89(1): F19-F24.

Garel M, Gosme-Seguret S, Kaminski M, Cuttini M. [Ethical decisions making in neonatal intensive care. survey among nursing staff in 2 French centers]. Arch pediatr. 1997; 4(7): 662-70.

Cuttini M, Casotto V, de Vonderweid U, et al. Neonatal end-of-life decisions and bioethical perspectives. Early Human Development. 2009; 85(10): S21-S25.

How to Cite
Soltani Gerdfaramarzi M, Bazmi S. Neonatal end-of-life decisions and ethical perspectives. J Med Ethics Hist Med. 13.
Review Article(s)