Journal of Bioethical Inquiry

, Volume 8, Issue 4, pp 363–377

Confronting Death in Legal Disputes About Treatment-Limitation in Children

Original Research


Most legal analyses of selective nontreatment of seriously ill children centre on the question of whether it is in a child’s best interests to be kept alive in the face of extreme suffering and/or an intolerable quality of life. Courts have resisted any direct confrontation with the question of whether the child’s death is in his or her best interests. Nevertheless, representations of death may have an important role to play in this field of jurisprudence. The prevailing philosophy is to configure death as a release from a futile or painful existence and/or as a dignified end in an objectively hopeless situation. However, there can be disagreement about the meaning of death in these settings. Some parents object that death would be premature or that it represents a culpable neglect of their child. A closer examination of these discordant interpretations allows for a better comprehension of the cultural understandings that underscore clinical and legal accounts of death following end-of-life decisions.


Death and dying Treatment-limitation in children Parental opposition Good death Legal responsibility for death Personhood and disability 


  1. American Academy of Pediatrics Committee on Bioethics. 1994. Guidelines on foregoing life-sustaining medical treatment. Pediatrics 93(3): 532–536.Google Scholar
  2. Asch, A. 1998. Distracted by disability. Cambridge Quarterly of Healthcare Ethics 7(1): 77–87.PubMedCrossRefGoogle Scholar
  3. BBC News. 1999. Mother’s court battle for son’s life. BBC News, April 22. Accessed June 17, 2009.
  4. BBC News. 2004a. Court to rule on sick baby care. BBC News, October 13. Accessed June 17, 2009.
  5. BBC News. 2004b. Hospital postpones baby court bid. BBC News, July 17. Accessed June 17, 2009.
  6. BBC News. 2005. Baby Luke death “natural causes.” BBC News, May 20. Accessed April 4, 2011.
  7. BBC News. 2009. RB surgery “not an option.” BBC News, November 3. Accessed April 4, 2011.
  8. Bridgeman, J. 2007. Parental responsibility, young children and healthcare law. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  9. Day, E. 2004. Do not resuscitate—and don’t bother consulting the family. The Telegraph, March 14. Accessed June 17, 2009.
  10. Doyal, L., and G. Durbin. 1998. When life may become too precious: The severely damaged neonate. Seminars in Neonatology 3(4): 275–284.CrossRefGoogle Scholar
  11. French, P., and R. Kayess. 2008. Deadly currents beneath calm waters: Persons with disability and the right to life in Australia. In Disabled people and the right to life—the protection and violation of disabled people’s most basic human rights, ed. L. Clements and J. Read, 57–84. Abingdon: Routledge.Google Scholar
  12. Green, J. 2008. Beyond the good death: The anthropology of modern dying. Philadelphia: Pennsylvania University Press.Google Scholar
  13. Hopkins, P.D. 1997. Why does removing machines count as “passive” euthanasia? The Hastings Center Report 27(3): 29–37.PubMedCrossRefGoogle Scholar
  14. Kellehear, A. 2004. Dying as a social relationship: A sociological review of debates about the determination of death. Social Science and Medicine 66(7): 1533–1544.Google Scholar
  15. Kittay, E.F. 2008. At the margins of moral personhood. Journal of Bioethical Inquiry 5(2–3): 137–156.CrossRefGoogle Scholar
  16. Koch, T. 1998. The limits of principle. Preager: Westport.Google Scholar
  17. Koch, T. 2005. The ideology of normalcy: The ethics of difference. Journal of Disability Policy Studies 16(2): 123–129.CrossRefGoogle Scholar
  18. McHaffie, H., I. Lang, M. Parker, and J. McMillan. 2001. Deciding for imperilled newborns: medical authority or parental autonomy? Journal of Medical Ethics 27(2): 104–109.PubMedCrossRefGoogle Scholar
  19. McMahan, J. 2003. The ethics of killing: Problems at the margins of life. New York: Oxford University Press.Google Scholar
  20. Morris, S. 2000. Relatives jailed for attack on doctors. The Guardian, July 15. Accessed June 17, 2009.
  21. New South Wales Health Research Ethics and Public Health Training. 2005. Guidelines for end-of-life care and decision-making. Sydney: NSW Department of Health.
  22. Royal College of Paediatrics and Child Health. 2004. Withholding or withdrawing life sustaining treatment in children: A framework for practice, 2nd edition. Accessed August 21, 2011.
  23. Singer, P. 1995. Rethinking life and death: The collapse of our traditional ethics. Oxford: Oxford University Press.Google Scholar
  24. Timmerman, S. 2005. Death brokering: Constructing culturally appropriate deaths. Sociology of Health & Illness 27(7): 993–1013.CrossRefGoogle Scholar
  25. Whitelaw, A. 1986. Death as an option in neonatal intensive care. The Lancet 328(8502): 328–331.CrossRefGoogle Scholar
  26. Wilkinson, D. 2006. Is it in the best interests of an intellectually disabled infant to die? Journal of Medical Ethics 32(8): 454–459.PubMedCrossRefGoogle Scholar
  27. Wilkinson, D.J., J.J. Fitzsimmons, P.A. Dargavillle, N.T. Campbell, P.M. Loughnan, P.N. McDougall, and J.F. Mills. 2006. Death in the neonatal intensive care unit: Changing patterns of end of life care over two decades. Archives of Disease in Childhood. Fetal and Neonatal Edition 91(4): F268–F271.PubMedCrossRefGoogle Scholar
  28. Wyatt, D. 2005. Our story. Charlotte Wyatt, don’t give up on me! blog, May. Accessed June 17, 2009.

Legal Cases

  1. A National Health Service Trust v D [2000] 2 FCR 577.Google Scholar
  2. Airedale NHS Trust v Bland [1993] 1 All ER 821.Google Scholar
  3. An NHS Trust v MB [2006] EWHC 507 (Fam).Google Scholar
  4. Glass and Another v United Kingdom [2004] 1 FLR 1019.Google Scholar
  5. Portsmouth NHS Trust v Wyatt & Ors [2004] EWHC 2247 (Fam).Google Scholar
  6. R v Portsmouth Hospitals NHS Trust, Ex parte Glass [1999] 2 FLR 905.Google Scholar
  7. Re B (A Child) [2009] EWHC 3269 (Fam).Google Scholar
  8. Re Baby D (No 2) [2011] FamCA 176.Google Scholar
  9. Re C (A Minor)(Wardship: Medical Treatment) [1990] Fam 26.Google Scholar
  10. Re C (A Minor)(Medical Treatment) [1998] 1 FLR 384.Google Scholar
  11. Re J (A Minor)(Wardship: Medical Treatment) [1991] Fam 33.Google Scholar
  12. Re K (A Child)(Withdrawal of Treatment) [2006] EWHC 1007 (Fam).Google Scholar
  13. Re OT [2009] EWCA Civ 409.Google Scholar
  14. Re Winston-Jones (A Child)(Medical Treatment: Parent’s Consent) [2004] All ER 313.Google Scholar
  15. Royal Wolverhampton Hospitals NHS Trust v B [2000] 2 FCR 76.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  1. 1.Sydney Law SchoolUniversity of SydneySydneyAustralia

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