Develop. Med. Child Neurol. 1982, 24, 1-2

EDITORIAL ETHICAL DILEMMAS IN PAEDIATRICS

PAEDIATRICS has become the focus of several moral and ethical dilemmas. The basis for many of these dilemmas rests upon neurological concepts such as ‘brain death’ and ‘quality of survival’, by which is usually meant the clinical concomitant of varying degrees of brain damage. All doctors who care for children can find themselves involved in such problems as certification of brain death, management of the severely brain-damaged infant o r the infant with congenital malformations of the nervous system, and in problems such as how efficaciously to strive to keep alive a severely neurologically handicapped child with an intercurrent infection.

The young doctor is unlikely to have been helped to deal with these problems by his undergraduate teaching, and is suddenly faced with enormous responsibility as part of the medical team when he becomes a resident house officer. In Britain, the recent charge of murder against a paediatrician who had done what he honestly thought was best has emphasised the isolation felt by many doctors of what has been termed ‘the sharp end’ of medicine.

The doctor’s first ethic is to prevent suffering. As there is no professional o r financial gain accrued by either allowing or preventing suffering, it is in the true sense an altruistic aim. Obviously it is easy to abrogate any further decision-making and accept that every product of conception that is born has a right to everything that medicine can offer, irrespective of the consequences in terms of handicap for the child or suffering for the rest of the family. If one adopts this attitude it salves one’s own conscience and removes the anxieties and doubts which disturb other doctors who make decisions about the ‘quality of life’ for some babies.

A doctor can make a clinical decision according to one of several alternatives. (1) Mathematical certainty is rarely applicable in medicine. If an anencephalic infant were kept alive by artificial means, it would be 100 per cent certain that he would be severely mentally and physically handicapped. Nevertheless, even gross brain damage apparent on CT scan is not inevitably associated with severe handicap. (2) Statistical probability is the method of decision-making for ‘quality of survival’ in most clinical situations (z.e. a balance of probabilities), based upon knowledge of the disease, its natural history, follow-up studies and the effects of treatment. In other words, the decision is based upon medical knowledge, as for example in cases of spina bifida, severe intraventricular haemorrhage and other causes of ‘brain death’. The more experienced and widely read the doctor, one hopes, the more accurate his ability to decide the correct course of action. (3) Prejudice affects the doctor just as it does the layman. It may be religious (i.e. against contraception or abortion), political, for personal gain, the result of unfortunate previous personal experience (e.g. severe side-effects from a drug) or, more recently, because of media pressures.

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The concept of ‘quality of survival’ gives rise to many problems. Must it always relate to mental handicap, and is physical handicap without mental handicap excluded? Are we certain about the degree of mental handicap in infants with spina bifida? The disturbing feature about recent legal cases is that they have concerned Down’s syndrome, a condition with very variable degrees of mental handicap and in which, given good programmes, most children walk, talk, are affectionate, fully aware, and learn (if a t a slower rate) in the true cognitive sense. It is not surprising, therefore, that there is wide divergence of opinion about the quality of life that a Down’s syndrome child can enjoy. Nevertheless, it is accepted medical practice that this quality of survival is such that it is desirable, if the mother wishes, to prevent a Down’s syndrome birth in women over 35 years by elective amniocentesis, followed by abortion of a n affected fetus. One cannot scientifically distinguish a ‘good’ from a ‘bad’ Down’s syndrome infant a t birth, yet medical decisions about treatment for such conditions as duodenal atresia or operable congenital heart-lesions have to be made. This difficulty has not lessened with the confusion caused by recent legal intervention: on the one hand, one court rules that in Down’s syndrome the quality of life is such that the parents’ and surgeons’ wishes could be over-ruled; on the other, a second court accepts sedation and allowing the child to die, in association with less common defects.

We tend not to advertise widely the frightful monstrosities (e.g. anencephalus with total rachischisis) which nature produces, for fear of causing upset to pregnant mothers. The result is that even experienced theologians may never have seen a severely malformed infant, about which they are having to make moral guidelines. Most people accept that it is immoral to offer life-support systems to these grossly malformed infants, so except that it is necessary to select which infants to treat and which not t o treat. This produces two further dilemmas: (1 ) where to draw the line-and this brings us back to the concept ofquality of survival; and(2) what to d o with infants not selected for treatment. The process of dying requires as much emphasis and study in the infant as has recently been given to death at the other extreme of age in hospices and in the care of the terminally ill cancer patient.

Governments must spend more money on provision for the handicapped; failure to d o so will add to our ethical dilemmas. Money put into prevention- a5 with antenatal diagnosis-pays dividends in terms of reduced handicap, yet often governments are not willing to finance such approaches. A doctor can only make decisions about giving o r withholding medical treatment on a balance of medical probabilities. Advances in medical technology mean that medical ethics, public morality and theology are more dynamic than at any time in man’s history, and need continuous review arid discussion.

J. KEITH BROWN

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