Ethics and neonatal care

380 zyxwvuts zyxwvut zyxwvu zyxwvutsrq zyxw zyxw zyxwvuts Commentaries vivors of childhood or adolescent cancer. N Engl J Med 317, 1315-1321. Byrne J., Mulvihill J. J., Connelly R. R. et al. (1988) Reproductive problems and birth defects in survivors of Wilnis’ tumour and their relatives. Med Pediatr O n c o l l 6 , 233-240. Campbell S., Pearcc J . M. F., Hackett G., CohenOverbeek T. & Hernandez C. (1986) Qualitative assessment of uteroplacental blood flow: Early scrccning test for high-risk pregnancies. Obstet Gynecol68, 649-653. Casarctt G. W. (1980) Radiation Histopathology, Vol. 1, CRC Press, Boca Raton, p. 37. Fox H. (1978) Pathology of the Placenta. W. B. Saunde n , London. GreenD. M.,Fine W. E. &LiF. P. (1982) Offspringof patients treated for unilateral Wilms’ tumour in childhood. Cancer 49, 2285-2288. Hawkins M. M. (1989) Long-term survival and cure after childhood canccr. Arrh Dis Child (in press). Hawkins M. M. & Smith R. A. (1988) Pregnancy outcomes in childhood cancer survivors: probable cffects of abdominal irradiation. Int J Cancer (in press). Hawkins M. M . , Smith R . A. & Curtice L. J. (19880) Childhood cancer survivors and their offspring studied through a postal survey of general practitioners: preliminary results. J R Coll Gen Pract 38, 102-10s. HawkinsM. M.. Smith R. A. &Draper G. J . (1988b) Survivors of childhood cancer and their offspring in Britain. In Reproduction and Human Cancer Mulvihill J. J. & Sherins R . J., eds), Raven Press, New York. Khong T. Y., Liddell N . S. & Kobcrtson W. B. (1987) Defective haemochorial placentation as a cause of miscarriagc: a preliminary study. Br J Obstet Gynaecol94, 649-655. Kirk M. & Lyon M. F. (1982) Induction of congenital anomalies in offspring of female mice exposed to varying doses of X-rays. Mufat Res 106, 73-83. Kirk K. M.& Lyon M. F. (1984) Induction of congenital malformations in the offspring of male mice treated with X-rays at pre-meiotic and post-mciotic stages. Mutat Res 125,75-85. Li F. P., Gimbcrc K . , Gclber R. D ., Sallan S . E., Flamant F.. Green D. M., Heyn R. M. & Meadows A. T. (1987) Outcome of pregnancy in survivors of Wilms’ tumour. JAMA 257, 216-219. Pcarce M. J. (1987) Uteroplacental and fetal bloodflow. Raillieres Clin Obstet Gynaecol 1, 157-184. Schull W. J . , Otake M. & Nee1 J. V. (1981) Genetic effects of the atomic bomb: a reappraisal. Science 213, 1220-1227. Shalet S. M., Beardwell C. G , , Morris-Jones P. H., Pearson D. & Orrell D. H. (1976) Ovarian failure following abdominal irradiation in childhood. Br J Cancer 33, 6.55-658. Smith D. W. (1981) Clinical approach to deformation problems. In Recognisable Patterns of Human Deformaiion (Major Problems in Clinical Paediatrics, Vol. XXI). W. B. Saunders, Philadelphia, pp. 97-109. White D. C. (1976) Thc histological basis for functional decrcmcnts in latc radiation injury in diverse organs. Cancer 10, 1126.1143. Ethics and neonatal care In the last decade the prospects for preterm babies have shown dramatic advances. But two linked events in September 1988 again exposed the moral and legal dilemmas in the care of newborn infants. The Royal College of Physicians’ report, Medical Care of the Newborn in England and Wales (1Y88), highlighted unnecessary neonatal deaths because of underfundedprovision of neonatal intensive care facilities. Then, thc report’s Secretary, consultant paediatrician Malcolm Chiswick, disclosed in a television documentary that decisions to withdraw life-saving treatment are arising more frequently. In terms of resource consumption, the survival of preterm babies is the most significant element in the neonatal treasury. However, in some cases babies will only survive with severe mental or physical disability, or both. It is in the treatment deemed appropriate for babies born before 30 weeks gestation, whcre immaturity demands life-support and intensive care facilities, that the keenest ethical and legal issues are disclosed. The emphasis placed by the Royal College of Physicians on the inadequacy and variability of intensive neonatal care provision masks important ethical dilemmas. On what principles should scarce resources be distributed‘! Should a baby with poor prognosis for normal development, whose parents believe in medical intervention at all costs, be given priority over one with less severe problcms, whose parents regard the option of non-treatment as a blessing in disguise? At the core of the dilemma facing parents Commentaries and paediatricians in neonatal units are two doubts: whether to use high-technology lifc-support machines to prolong the lives of infants with profound neurological or other physical abnormalities, and whether to resuscitate cxtrcmclylow-birthweight babies. The ethical issues are hard to define, the law in the UK is unclear and public sentiment is largely untested. Legal reaction to ethical dilemmas tcnds to be ad hoc or post facto; two types of responye can be identified. The first is illustrated by the trial and acquittal 01 consultant paediatrician Leonard Arthur in 1982. John Pcarson, suffering from Down’s syndrome and rejected by his parents, died 48 h after birth. The cause of death was originally given as bronchial pneumonia attributed to the dosage of dihydrocodeine prescribed by Arthur. When dcfcnce pathologists disclosed the presence of other congenital physical abnormalities which themselves could havc been the causc of death, the original murder charge (carrying a mandatory life sentence on conviction) was replaced by a charge of attempted murder. After a generous summing up, which has since been seriously questioned, Arthur was acquitted (see Gunn & Smith 1985). The second legal response has focused on attempts to force doctors to operate where they, either alone or with the agreement of parents, refuse to undertake life-saving operations. Onc such case just before Arthur’s trial involved a rejected baby with Down’s syndrome, Alexandra, with duodenal atresia (Re B 1981). The Court of Appeal baulked at the argument that the best interests of this particular child would be served by allowing her to die. The judges could foresee the possibility of cases of scvcre proven damage where the child’s life was bound to be full of pain, where the prospect of life could bc shown to be so demonstrably awful, where an opposite conclusion would be appropriate. In Alexandra’s case, even though they regarded tht: parents’ decision as entirely responsible, they concluded that the operation should be authorized. More recently, two attempts havc bccn made to challenge decisions on resource allocation made by hospital authorities in relation to young children waiting lengthy periods for heart surgery. Both attempts to obtain court orders to force surgeons to operate failed. One case involved a preterm baby with a heart defect (Walker 1987). A planned operation had been cancelled several times to allow more urgent zy 381 cases to take priority. The baby was not in intensive care nor in an incubator, but monitored in a general ward. The court declined to intervene. The Health Authority had not acted unlawfully when it drew up its budget allocations, nor had it acted unreasonably to the point of irrationality. The parents’ complaint was not directed to the particular opcrational decision, but was a general criticism of the health service. That could not be entertained by the courts. Judicial attitudes were encapsulatcd in the case of 4-ycarold Matthew Collier, when the Court of Appeal said that they ‘had no role in the general investigation of social policies and the allocation of resources’ and that they ‘cannot arrange hospital waiting lists’ (Collier 1988). There is a tension inherent in this; the court in Alexandra’s casc was prepared to mandate surgery without regard to the resource implications or whether any other baby was displaced from the waiting list. In both recent cases, operations were performed soon after the court hearings. Right-to-life proponcnts argue that non-trcatment is an example of the consumerist attitude to life which is fostered by abortion laws and practices. But this confuses the resolution of two very different moral dilemmas. In abortion, the issue revolves around the disposal of unwanted fetuses. Non-treatment involves children who are very much wanted but whose existence will generate so much pain to themselves and possibly to their parents and siblings that their passing should be eased and secured in a responsible and responsive manner. Very few people can be identified as holding an absolute sanctity-of-life position. Anencephalic babies cause most people to pause in their zeal for treatment for all, at any cost. Chromosomal or recessive genetic diseases, such as trisomy 18 or the very rare Lcsch-Nyhan syndrome are difficult too, as is severe spina bifida. These are extremes at one end of a continuum on which the Down’s syndromc baby with whom Arthur dealt is at the other. It can be argued in terms of quality-of-life prognosis that some babies on this continuum would be better off dead than alive. Two dangers arise from the present legal lacuna, dangers which, to judge from the comments made by Malcolm Chiswick at the close of the recent documentary, we should do well to address urgently. One is that some babies with very poor prognoses are resuscitated without parcnts being given the option of non-treatment. zyxwvuts zyxwvutsrqp zyxwvu zyxwvu zyxwvu 382 zyxwvutsrq z zyx zy Commentaries The other is that some babies are allowed to die even though their condition is not particularly serious. The first is an example of non-responsiveness, the second of non-responsibility. It should not be a matter of chance that parents and their newborn children become involved with a paediatric team led by either a heroic interventionist o r a cavalier abstainer. There is a third, more suffusc result, which is that thc heroic efforts to savc the most marginal, vulnerable newborn babies consume resources necessarily denied those on the ‘silent’ and the visible waiting lists. There is an uncomfortable eugenic undertone in arguments such as this; but it is increasingly apparent that even if we cared and provided for, treated and valucd, disablcd people as we should, there would remain some babies for whom we are morally entitled, if not morally obligcd, to consider earnestly non-treatment. These are babies for whom life would be so miserably unpleasant and limited, for whom life would not have been possible without the hospitals and tcchnology t o sustain it, that we should in the responsible use of that technology, withdraw it (Wells 1989). In place of the legal vacuum left by ad hoc responses should be a set of guidelines which allow doctors and parents to make responsible and rcsponsive decisions. A n urgent task is to devise criteria which would help to identify those babies whose lives are destined to be ‘so demonstrably awful’ that non-treatment should be an option for the parents. The RCP Report openly eschews ethical questions but states both that all babies should be respected and treated as potentially autonomous persons and that the ‘main objective’ of neonatal intensive care is the maximum survival of potentially normal individuals with the minimum risk of salvaging hopelessly disabled ones. The tragic failure of our present attempts to grapple with these dilemmas is the irresolution of these two conflicting aspirations. Derek Morgan Fellow in Health Care Law Centre for Philosophy arid Heulth Care University College Swansea SA2 8 P P Celia Wells Lecturer Cardiff Law School PO Box 427, Cardiff CF1 1XD zyxwv zyxwvut zy References Collier (1988) T/7e Independent 7th January, p. 1. Gunti M. & Smith J. C. (1985) Arthur’s case and the right to life of a Down’s syndrome child. Criminal Law Review 705-71.5. Re B (1981) 1 Weekly Law Reports 1421. Rcport of the Royal College of Physicians (1988) Medical Care of the Newborn in England and Wales, RCP, London. Walker (1987) The Independerit25th Novcmbcr. p. 27. Wells C. (1989) ‘Otherwise kill mc’: marginal children and ethics at the edges of existence. In Birthrights: L,aw and Ethics at the BegirrningA of Life (Lee R. & MorganD., cds), Routledge, London, pp. 195-217.