Advertisement

Springer Nature is making Coronavirus research free. View research | View latest news | Sign up for updates

Consultation of parents in actual end-of-life decision-making in neonates and infants

Abstract

The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.

This is a preview of subscription content, log in to check access.

Abbreviations

ELD:

End-of-life decision with a possible or certain life-shortening effect

References

  1. 1.

    American Academy of Pediatrics, Committee on Bioethics (1996) Ethics and the care of critically ill infants and children. Pediatrics 98:149–152

  2. 2.

    American Academy of Pediatrics, Committee on Bioethics (1994) Guidelines on forgoing life-sustaining medical treatment. Pediatrics 93:532–536

  3. 3.

    American Academy of Pediatrics, Committee on Fetus and Newborn (1995) The initiation or withdrawal of treatment for high-risk newborns. Pediatrics 96:362–363

  4. 4.

    American Academy of Pediatrics, Hugh MacDonald, Committee on Fetus and Newborn (2002) Perinatal care at the threshold of viability. Pediatrics 110:1024–1027

  5. 5.

    Anonymous (2004) Aiding decision making for baby Charlotte and baby Luke. Lancet 364:1462

  6. 6.

    Carlet J, Thijs LG, Antonelli M, Cassell J, Cox P, Hill N, Hinds C, Pimentel JM, Reinhart K, Thompson BT (2004) Challenges in end-of-life care in the ICU. Statement of the 5th international consensus conference in critical care, Brussels, Belgium, April 2003. Intensive Care Med 30:770–784

  7. 7.

    Chiswick M (2001) Parents and end of life decisions in neonatal practice. Arch Dis Child Fetal Neonatal 85:F1–F3

  8. 8.

    Cuttini M, Nadai M, Kaminski M, Hansen G, Leeuw R de, Lenoir S, Persson J, Rebagliato M, Reid M, de Vonderweid U, Lenard HG, Orzalesi M, Saracci R (2000) End-of-life decisions in neonatal intensive care: physicians’ self-reported practices in seven European countries. Lancet 355:2112–2118

  9. 9.

    Cuttini M, Rebagliato M, Bortoli P, Hansen G, de Leeuw R, Lenoir S, Persson J, Reid M, Schroell M, de Vonderweid U, Kaminski M, Lenard H, Orzalesi M, Saracci R (1999) Parental visiting, communication and participation in ethical decisions: a comparison of neonatal unit policies in Europe. Arch Dis Child Fetal Neonatal 81:F84–F91

  10. 10.

    Doyal L, Larcher VF (2000) Drafting guidelines for the withholding or withdrawing of life sustaining treatment in critically ill children and neonates. Arch Dis Child Fetal Neonatal 83:F60–F63

  11. 11.

    Emanuel EJ, Emanuel LL (1992) Four models of the physician-patient relationship. JAMA 267:2221–2226

  12. 12.

    Eurocat Working Group (2001) Report 7: 15 years surveillance of congenital anomalies in Europe. Scientific Institute of Public Health, Brussels, Belgium

  13. 13.

    Friedman Ross L (1998) Children, families and health-care decision making. Clarendon Press, Oxford

  14. 14.

    van der Heide A, van der Maas PJ, van der Wal G, de Graaff CL, Kester JG, Kollee LA, de Leeuw R, Holl RA (1997) Medical end-of-life decisions made for neonates and infants in the Netherlands. Lancet 350:251–255

  15. 15.

    van der Heide A, van der Maas PJ, van der Wal G, Kollee LA, de Leeuw R, Holl RA (1998) The role of parents in end-of-life decisions in neonatology: physicians’ views and practices. Pediatrics 10:413–418

  16. 16.

    Kurz R; the members of the Working Group of CESP (2001) Decision making in extreme situations involving children: withholding or withdrawal of life supporting treatment in paediatric care. Statement of the ethics working group of the CESP (Confederation of the European Specialists in Paediatrics). Eur J Pediatr 160:214–216

  17. 17.

    de Leeuw R, Cuttini M, Nadai M, Berbik I, Hansen G, Kucinskas A, Lenoir S, Levin A, Persson J, Rebagliato M, Reid M, Schroell M, de Vonderweid U; EURONIC study group (2000) Treatment choices for extremely preterm infants: an international perspective. J Pediatr 137:608–616

  18. 18.

    Mc Haffie HE, Fowlie PW (1996) Life, death and decisions. Doctors and nurses reflect on neonatal practice. Hochland & Hochland, Hale, Cheshire

  19. 19.

    McHaffie HE, Lyon AJ, Fowlie PW (2001) Lingering death after treatment withdrawal in the neonatal intensive care unit. Arch Dis Child Fetal Neonatal 85:F8–F12

  20. 20.

    Mortier F, Bilsen J, Vander Stichele RH, Bernheim J, Deliens L (2003) Attitudes, sociodemographic characteristics, and actual end-of-life decisions of physicians in Flanders, Belgium. Med Decis Making 23:502–510

  21. 21.

    Orfali K (2004) Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units. Soc Sci Med 58:2009–2022

  22. 22.

    Paris JJ, Singh J, Schreiber MD, Reardon FE (1999) Unilateral do-not-resuscitate order in the neonatal intensive care unit. J Perinatol 19:383–387

  23. 23.

    Provoost V, Cools F; the NIC-consortium, Mortier F, Bilsen J, Ramet J, Vandenplas Y, Deliens L (2005) Medical end-of-life decisions in neonates and infants in Flanders: a nationwide study. Lancet 365:1315–1320

  24. 24.

    Provoost V, Deliens L, Cools F, Deconinck PG, Ramet J, Mortier F, Vandenplas Y (2005) A classification of end-of-life decisions in neonates and infants. Acta Paediatr 93:301–305

  25. 25.

    Quill TE, Dresser R, Brock DW (1997) The rule of double effect-a critique of its role in end-of-life decision making. N Engl J Med 337:1768–1771

  26. 26.

    Sauer PJJ; the members of the Working Group (2001) Ethical dilemmas in neonatology: recommendations of the ethics working group of the CESP (Confederation of the European Specialists in Paediatrics). Eur J Pediatr 160:364–368

  27. 27.

    Saigal S, Stoskopf BL, Feeny D, Furlong W, Burrows E, Rosenbaum PL, Hoult L (1999) Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA 281:1991–1997

  28. 28.

    Streiner DL, Saigal S, Burrows E, Stoskopf B, Rosenbaum P (2001) Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics 108:152–157

  29. 29.

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

  30. 30.

    Widger K, Wilkins K (2004) What are the key components of quality perinatal and pediatric end-of-life care? A literature review. J Palliat Care 20:105–112

Download references

Acknowledgements

This study was supported by grants from the Research Council (OZR) and the Cultural Support Fund of the Vrije Universiteit Brussel (VUB). The clinical patient data were supplied by the Preventive and Social Health Care Division of the Ministry of Flanders’ registry of births and deaths, and by the Flemish Center for Study of Perinatal Epidemiology (SPE). We are indebted to the Belgian Society of Pediatrics and to all departments of neonatal intensive care in Flanders for their cooperation in the study. We thank Johan Vanoverloop for advice on statistical issues. We would also like to thank Avram Benatar for contributing to the categorization of clinical variables and Jan Bernheim for advice on the discussion section.

Role of the funding source

Both funding sources supported the study after approval of the study design that was proposed by the researchers. They had no role in data collection, data analysis, data interpretation, or writing of the report.

Author information

Correspondence to Yvan Vandenplas.

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Provoost, V., Cools, F., Deconinck, P. et al. Consultation of parents in actual end-of-life decision-making in neonates and infants. Eur J Pediatr 165, 859–866 (2006). https://doi.org/10.1007/s00431-006-0190-4

Download citation

Keywords

  • Infant care
  • Infant death
  • Infant mortality
  • Medical ethics
  • Medical futility
  • End of life decision