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Legal Issues in Treating Critically Ill Newborn Infants

Published online by Cambridge University Press:  29 July 2009

Loane Skene
Loane Skene
Affiliation:
University of Melbourne
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Extract

Say an infant is born with high lesion spina bifida. She is paralyzed from the waist down and has severe wasting of all areas below the waist. She will always be doubly incontinent and will have no normal sexual function. She has hydrocephalus and a brain stem, abnormality (Arnold Chiari malformation) that is likely to significantly shorten her life. She will probably be retarded and epileptic. She has severe leg deformities — dislocated hips, dislocated knees, and club feet. Her hips are held in a constant position over her chest and her knees cannot be bent in the right direction. She has an 80% chance of developing kyphoscoliosis (curvature of the spine) which may ultimately prevent her from, sitting in a wheelchair and may restrict her lungs, causing respiratory failure and death. She has little spontaneous movement and little response to simple stimuli. She has shallow breathing and difficulty in swallowing and sucking. Whatever treatment this infant is offered, she may not survive. If she does survive, her quality of life is likely to be so poor that one might question whether she would want to live such a life.

Type
Special Section: From Cells to Selves: Ethics at the Beginning of Life
Information
Cambridge Quarterly of Healthcare Ethics , Volume 2 , Issue 3 , Summer 1993 , pp. 295 - 308
Copyright
Copyright © Cambridge University Press 1993

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References

Notes

1. This is a description of “Baby M,” whose death was investigated by the Coroner's Court in Melbourne in 1991. Record of Investigation into Death — Case No 3149/89.

2. R v. Arthur, The Times 1981Google Scholar Nov. 6. Dr. Arthur's trial was widely reported in the press at the time, but it was not reported in the law reports. It was discussed in Gunn, MJ, Smith, JC. Arthur's case and the right to life of a Down's syndrome child. Criminal Law Review 1985;705,Google Scholar and in comments on that article by Poole, David and Brahams, Diana, Criminal Law Review 1986;383, 387.Google ScholarSee Kuhse, H, Singer, P. Should the Baby Live? The Problem of Handicapped Infants. Oxford, England: Oxford University Press, 1985:1–11 (esp. p. 7).Google ScholarKennedy, I. Treat Me Right. Oxford, England: Clarendon Press, 1988:154–8.Google ScholarR v. Instan [1893] 1 QB 450, in which the accused was convicted of manslaughter when she failed to seek medical aid for her aunt who contracted gangrene and died.Google Scholar

3. It is arguable that intention to cause death is not a necessary element of murder. Foresight of the probability of death may suffice. In Crabbe, Re (1985) 156 CLR 464,Google Scholar the High Court of Australia held that foresight by the defendant of the probability that an act would cause either death or serious bodily harm was sufficient mens rea for murder. The question is still open, but it would surely be unacceptable to equate intention and foresight in all circumstances; for example, a surgeon who operates to save a patient's life in the knowledge that death is probable whatever steps are taken should not be at risk of indictment for murder.

4. Re F; F v. F (unreported, Supreme Court of Victoria, 2 July 1986, Vincent, J).Google Scholar

5. See Skene, L. Quality of life and disabled infants. Law Institute Journal 1992;66(11):998.Google Scholar

6. Re B (a minor) (wardship: medical treatment) (1981) [1990] 3 All ER 927.Google Scholar

7. Re C (a minor) (wardship: medical treatment) [1989] 2 All ER 782.Google Scholar

8. Per Lord, Donaldson MR, summing up the pediatrician's view, p. 786.Google Scholar

9. Re J (a minor) (wardship: medical treatment) [1990] All ER 930.Google Scholar

10. Court of Appeal [1993] 2 WLR 332;Google ScholarPubMedHouse of Lords [1993] 2 WLR 316.Google ScholarPubMed

11. Such as Dr. Arthur's case (see note 2).

12. See note 9. Re J, p. 938 (Lord, Donaldson).Google Scholar The use of the term “primary purpose” and an earlier reference to treatment “which as a side effect will render death more or less likely” (p. 938, his emphasis) reflects the Roman Catholic doctrine of “double effect” —a doctor is permitted to give drugs to a patient if the primary intention is to alleviate pain even if an unintended side effect is to hasten death. In the Declaration on Euthanasia published by the Sacred Congregation for the Doctrine of the Faith on 5 May 1980, the Roman Catholic Church acknowledged that the use of medicines capable of alleviating or suppressing pain is permissible even if they cause semiconsciousness as a secondary effect. This is, of course, not the same as death, although the Declaration is commonly cited as if it also referred to hastening death.

13. This was a major issue in the Baby M inquest. Although the baby's doctors testified that they had prescribed phenobarbitone as needed to alleviate distress, that did not appear in the nursing notes. The Right to Life Association alleged at the inquest that the drug was given routinely to suppress the baby's breathing and her desire for food. The doctors' intention in ordering medica- tion was a question of fact, and disputes in future cases could be avoided by recording it in the nursing notes.

14. A 1985 survey of nearly 200 obstetricians and pediatricians in Victoria found that all but two agreed that in some circumstances it was proper not to use all available means to keep an infant alive. See note 2. Kuhse, Singer. 1985:77. National Consensus Conferences on Neonatal Intensive Care in Australia in 1985, 1987, and 1989 noted that “there was consensus that it is reasonable and accepted practice to withdraw … [medical treatment necessary for an infant's survival], after considered discussion between parent and specialist caregiver … [if] there is a substantial probability of major disability” (emphasis added): Report of South Australian Task Force on Ethical and Legal Issues Concerning Disabled and Extremely Low Weight Newborn Infants, March 1991, p. 5. A 1987 questionnaire survey of Australian neonatologists found that “there was general consensus that curative efforts should be discontinued and palliative care introduced … when complications develop resulting in near certainty of death or probable major incapacity” (emphasis added): De Garis, C, Kuhse, H, Singer, P, Yu, VYH. Attitudes of Australian neonatal paediatricians to the treatment of extremely preterm infants. Australian Paediatric Journal 1987;23:223.Google ScholarPubMed Professor Victor Yu, a pediatrician at the Monash Medical Centre in Melbourne, found in the 10 years from 1977 to 1986 that 10% of 442 extremely preterm babies (23–28 weeks gestation) were not offered intensive care because they had “major malformations” (4%) (which included myleomeningocele like Baby M) or were considered “nonviable.” Yu, V et al. Survival prospects of extremely preterm infants: a ten-year experience in a single perinatal centre. American Journal of Perinatology 1992; 9:164–169.CrossRefGoogle Scholar

15. “Active treatment” does not include giving sustenance and whatever painkilling drugs are necessary to alleviate pain and distress.

16. See note 14.

17. A public survey in November 1982 revealed that two out of three Australians believe that doctors should allow a badly deformed baby to die rather than to try to keep the baby alive. Cited by Kirby, Justice Michael, Keynote address, National Consensus Conference on Neonatal Intensive Care,1989, p. 13.Google Scholar

18. Human Rights Commission. Legal and Ethical Aspects of the Management of Newborns with Severe Disabilities. Occasional Paper No 10. Canberra: AGPS, 1985 08., para. 89.Google Scholar

19. See note 18.

20. In Australia, all states have such legislation.

21. Re Jane, (1988) 12 Fam LR 662;Google ScholarRe Elizabeth, (1989) 13 Fam LR 47;Google ScholarRe Marion, , High Court of Australia, unreported, 6 May 1992 (FC 92/010);Google Scholar cf. other cases in which the parents were held to have the right to decide: Re a Teenager, (1988) 13 Fam LR 85;Google ScholarRe S, (1990) 13 Fam LR 660.Google Scholar

22. Record of Investigation and Death, pp. 25–6.Google Scholar

23. Cf. the U.S. President's Commission for the Study of Ethical Problems in Medical and Biomedical Behavioral Research. Deciding to Forego Life-Sustaining Treatment. Washington, D.C.: U.S. Government Printing Office, 1983:215. “Not only do … [families] provide the setting in which children are raised, but the interdependence of family members is an important support and means of expression for adults as well…. [Intruding upon the functioning of families] would be difficult … and it would destroy some of the value of the family, which seems to need privacy and discretion to maintain its significance.”Google ScholarPubMed

24. In Australia, for example, this might be the Director-General of the Department of Community Services. In England, it might be the Official Solicitor.

25. DrFreeman, John, in a BBC interview, “The Defect—Part 1,” broadcast on Radio 3, 18 Oct. 1978. Quoted by Kuhse and Singer (see note 2), p. 63.Google Scholar See, too, McLone, D. Treatment of myleomeningocele: arguments against selection. Clinical Neurosurgery 1986;33:368. “Armed with expert opinion presented positively, … [parents] almost invariably choose the recommendation of the expert.”Google Scholar

26. (1988) 12 Fam LR 662, at 685 (Family Court of Australia).Google Scholar

27. The Task Force (see note 14) recommended that the Natural Death Act 1983 (SA) be amended to clarify that a doctor incurs no liability if extraordinary measures are withdrawn with parental consent and that the withdrawal is not the cause of death where death is inevitable and imminent regardless of treatment or where continued treatment cannot relieve pain or suffering believed to be intolerable (1991, p. 45).

28. Personal communication, 2 Sept. 1991.

29. See note 21.

30. Keynote address (see note 17), p. 18. In another paper, Justice Kirby suggested that the community's claim to be heard arises from its obligation “to contribute significantly to the support of such a child.” The Physician, the Law, Life and Death. Address to the Royal Australasian College of Physicians, Nov. 1981.Google Scholar

31. For example, Re B (see note 6); The Superintendent of Family and Child Services v. Dawson. One need hardly surmise why trial judges, who have the distraught parents and concerned doctors before them, often take a different view from appellate courts, which decide on the basis of legal principles! (1983) 145 DLR (3rd) 610.Google Scholar

32. Personal communication, Sept. 1991.

33. DrCampbell, Neil, “Newborn babies and the right to die with dignity.” First Report on Inquiry into Options for Dying with Dignity, Parliament of Victoria, March 1986, p. 35.Google Scholar

34. See note 14. “We see the need for an ongoing body to provide an intercampus forum for discussion and consideration of the legal and ethical issues relating to newborns; ongoing advice to the Health Commission; and retrospective monitoring or review of cases of withdrawal” (emphasis added). Report, 1991:44.Google Scholar

35. Non-intervention in children with major handicaps, legal and ethical issues. Australian Paediatric Journal 1983; 19:217.Google ScholarPubMed The South Australian Task Force (see note 14) also called for guidelines (Report, 1991:46Google Scholar). The three neonatologists at the Royal Children's Hospital who cared for Baby M said at an Australian Perinatal Association Conference in December 1991 that they supported procedural guidelines. So did DrKuhse, Helga. Editorial. Bioethics News 1992;11:1–2.Google Scholar

36. See the case of “Baby P.” Skene, L. Letter to the Editor. Bioethics News 1992; 11:43.Google Scholar

37. The Working Party established by the Australian College of Paediatrics in 1992 consists of four pediatricians and one lawyer (this author).

38. Professor Ian Kennedy suggested that the criterion for deciding whether it is more ethically justifiable that a baby should be helped to live rather than allowed to die might be “the capacity to flourish as a human being … the capacity to interact with others, to communicate, whether rationally through language or spiritually through displays of feeling and emotion.” Kennedy, I. Treat Me Right. Oxford, England: Clarendon Press, 1988:161.Google ScholarCf. the trial judge in Re C (see note 7), quoted by Lord, Donaldson MR, p. 787: “what capacity has she to interact mentally, socially, physically?” Australian Professor Max Charles worth suggested that the test might be “Is there a chance, however slender, of the child doing something, however minimal and for however brief a time, with its life despite its physical disabilities; or are those physical disabilities so grave that it could not possibly give any meaning or worth or value to its life even though it might be enabled to physically survive?” Charlesworth M. What kinds of life are not worth living? (1991;unpublished).Google Scholar

39. Although, see Bland's case, note 10.

40. Evidence of accepted medical practice is not conclusive (Roger v. Whitaker, (1992) 67 ALJR 47, High Court of Australia, Nov. 1992), but it is very persuasive.Google Scholar