Page 5, 13th November 1981

13th November 1981
Page 5
Page 5, 13th November 1981 — The medical and ethical treatment of handicapped babies is analysed

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The medical and ethical treatment of handicapped babies is analysed

by Miss Irene M. Irving, Senior Lecturer and Consultant in Paediatric Surgery in the University of Liverpool.

Matters of life and death

Mr Rex Brinkworth, director of the Down's Children's Association, with his 15-year-old daughter who suffers from the syndrome. Mr Brinkworth has emerged this week as a champion of the rights of the handicapped

The verdict of not guilty." which concluded the trial of Dr Leonard Arthur for the attempted murder of a newborn baby with Down's syndrome has been reported as being greeted with relief and delight by other eminent paediatricians.

Professor John Lorber, former Professor of Paediatrics at Sheffield University was quoted in The Guardian as saying: "It's marvellous for babies, it's marvellous for parents, it's marvellous for doctors and it should put an end to this horrible spying business in hospitals." I believe him to be wrong on all counts.

This trial, already regarded as an historic test-case. can be seen as the backlash of a society which is frightened by its own devaluation of human life. it is a society which. in adopting a liberal abortion law. has not only permitted abortion on demand but has also paved the way for wholesale pre-natal destruction of abnormal babies.

A great deal of research and clinical time has been devoted to the refinement of techniques for the detection of malformation in the developing foetus and undoubtedly they represent significant scientific advances. It is unusual. however. for pre-natal diagnosis to be used as an aid to treatment: much more commonly the end result is destruction of the foetus.

It is no mere coincidence that there has been a trend among paediatricians to be increasingly selective in their treatment of deformed newborn babies prepared to admit that "withholding of treatment" includes sedation and starvation.

Running parallel with this trend has been the increasing popularity of televised debates tend to confuse rather than to clarify lay minds. It is not surprising that the confidence of the public in the medical profession is being undermined.

Several important definitions and distinctions need to be made in any attempt to discuss the ethical problems which can con-, front paediatricians or paediatric surgeons in their care of severely handicapped newborns. The basic concept is the right to life: the most fundamental right of every member of society whether normal or handicapped. As emphasised recently by Cardinal Hume, the right to life is not to be given, or taken away, by the law, nor by parents or doctors.

This is not to say that under all

circumstances every sophisticated means of preserving life must be used: this would

clearly be quite unjustified if the child's condition is untreatable and will lead to death within a short while. In such cases only the most basic treatment is required — warmth, food, comfort (for parents as well as child) and any drugs that are required to relieve symptoms.

At the other end of the spectrum are the conditions that are eminently treatable and will allow for normal or near-normal life. These children do not pose any moral dilemma. The less severe degrees of spina bifida and most conditions of the food passages requiring surgery shortly after birth enter into this category.

The most difficult cases are those in the "grey area' between these two extremes. namely, babies who are likely to survive. with or without routine surgery, but who will be permanently handicapped, either mentally or physically or both. Babies with Down's syndrome (mongolism) come into this category. In the case of uncomplicated Down's syndrome. the baby deserves the same basic care as a normal baby, and any treatment which is deliberately intended to end or shorten the baby's life is morally wrong.

It can be argued, and often is argued, that Down's syndrome complicated by obstruction in the bowel poses a completely different problem and that in such cases withholding of surgery is justifiable since more extraordinary measures than basic care are required to secure the baby's survival. The operation in question, however. is a routine one in any country with an adequate paediatric surgical service and unless the baby has other physical problems which make him unfit for surgery. failure to give him the benefit of surgery can only be construed as a denial of his right to life on the grounds of his anticipated mental subnormality.

Given careful and sympathetic counselling it is exceptional for parents faced with.this particular problem to withhold consent for surgery and for the child to be made a ward of court as in the recent much publicised case. It should not be forgotten that rejection by the parents does not necessarily mean that the child will spend his life in an institution. One of the more heartening aspects of society is the willingness of many couples to adopt mentally and physically handicapped children. It is in the treatment of the condition of open spina bifida that paediatricians and paediatric surgeons are most frequently faced with complex medical and moral dilemmas. In this condition the spinal cord lies exposed in the lower part of the back. This is accompanied by a greater or lesser degree of paralysis of the leg muscles and of the bladder muscle and. in most cases by hydrocephalus — the condition which results from an increase in the pressure of the fluid within the brain.

Some of these babies have such a severe degree of the condition. maybe aggravated by complications or by other malformations, that they will clearly only survive for a short time. These babies are quite unsuitable for surgery. It is unusual for these babies to show evidence of pain but if they do so then pain-killing

drugs must be given to ease the distress. It is never justifiable to do anything deliberately to hasten death even though the outcome is seen to be inevitable.

In the case of babies with an open spina bifida but with little or only moderate nerve damage. an emergency operation to close the open wound on the back is the correct treatment since otherwise the condition of the nerves can deteriorate.

Between the two extreme degrees of the condition there is a large number of babies with varying degrees of paralysis who have a good prospect for survival . if treated enthusiastically but who will undoubtedly be permanently handicapped to a significant degree.

It is about this group that a great deal of controversy exists. The controversy surrounds the concept of "selection" for treatment of only those babies in whom a good outcome can be predicted.

It will be realised from what has already been said that some babies are selected for conservative treatment and are unsuitable for surgery because of their very poor condition. It needs to he emphasised that for some other babies conservative treatment is more suitable than surgery because of the shape or site of the lesion on the hack. and that many babies so treated will survive and do well within the limits of their handicap. In some centres however "selection" means that unoperated babies are given no treatment and are not simply "allowed" to die but are encouraged to die by sedation and inadequate nourishment. This cannot he justified.

There is a real danger that our society will come to accept as normal the elimination of severely handicapped babies after their birth as well as before birth. The verdict in Dr Arthur's trial may well he construed as a sign of that acceptance and this is why I cannot agree that the verdict was 'marvellous' for any section of society.

Now more than ever Catholic doctors and nurses must set an exemplary standard in their care of the handicapped newborn and the Catholic community as a whole must give them full support.

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