Charged with deciding the undecidable

Should Thomas Creedon die? It's an ethical nightmare that defies parents, doctors, and the law
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The Independent Online
Compassion and morality are once again pulling in different directions. The case of 22-month-old Thomas Creedon, who is so severely brain-damaged that his parents believe he should not be kept alive, is a nightmare of modern responsibility. Who is qualified to decide on his future - the courts, the doctors, or the parents? The case falls on a painful intersection of modern science and quality of life.

Who cares most for him? Con and Fiona Creedon believe their little boy is suffering. As parents they have particular insight. They love him. They're not asking for anybody else to look after him. The offer of 24- hour lifetime care by a hospice is generous, but irrelevant. It is the suffering the Creedons wish to end, not the circumstances in which it takes place. They are very courageous, and must be very desperate, to have come this far.

But their conviction is not shared by some of the doctors who have been supervising Thomas's treatment. They consider his plight no more agonising than that of other children they deal with. They intend to oppose the Creedons' application that their son should no longer be fed through a tube in his stomach.

Both sides have no choice but to act this way. The Creedons' motivation is obvious. And the doctors must be on the side of life. We go to them in search of cure, improvement or, at the very least, maintenance. They cannot start to include deterioration or death as options in their medical arsenal.

Yet the popular vote in this case seems - from a straw poll of phone- ins and programmes - to go with the parents. They are his mother and father, for God's sake, they must know. When it comes to the great mysteries of life, we instinctively trust those bonds of blood. Thomas, the only person who might truly know - but may well not - will never be able to express his view on his own suffering, or lack of it. So we listen to his parents' interpretation of what he would want.

Except the law cannot allow that. The law deals in facts, not feelings, although its officers may still be sensitive to the parents' plight. In his ruling on the Creedon case on Monday, Sir Stephen Brown, president of the High Court Family Division, made it clear that the court should take on a "measure of the burden of responsibility which at present falls solely and heavily on Thomas's parents". Over some months, perhaps years, evidence will be considered as to Thomas's future.

I have no idea what the outcome should be. The press reports, the still and television pictures of the child and his parents all evoke strong reaction. To some he looks isolated and pathetic, to others surprisingly healthy and in some degree responsive. The task of the court is to weigh sympathy for the special knowledge and distress of the parents with the minutiae of the medical and ethical evidence.

Whatever the decision eventually is, it is bound to cause pain and sadness to the parties involved. What is clear is that in future there will be more cases in which parents seek to end what they consider an unacceptable life for their sick children, a life made possible by the advances of modern science. Already, in Devon, the parents of another brain-damaged two-year-old have begun a campaign to administer a lethal injection to end his life. In the past 48 hours, a coroner has asked detectives to investigate the death of a brain-damaged baby girl in an intensive care unit in Manchester.

More could be done to support the parents of these children who are stranded in limbo, suspended between what is technically possible and what society - or humanity - considers a life worth living. Medicine, so long concerned with keeping people alive, is now rightly putting more effort into improving the quality of that life, even where there is no "cure" or prospect of improvement. Public opinion must become more accepting of the imperfect and the handicapped, since more children will survive with serious physical and mental disabilities. After all, this is what we wanted, for more babies to live. Now we have to learn to live with them.

But there will still be parents who believe their children can take no more suffering. Can society help them with guidelines, laws, precedents? The problem is that no two cases should be comparable. Whatever the decision in the Thomas Creedon case, it must remain the Thomas Creedon decision and not be employed as a precedent. It has no parallel with the case of Tony Bland, victim of the Hillsborough tragedy, yet that association crops up repeatedly.

Comparison is pointless. Over the past few weeks, in the discussion of this case and others, parents have testified to their own experience. Over and over again, matching pairs have been found - two children with apparently the same level of disability yet whose parents take diametrically opposed views as to the quality of life their children experience. For one set, their child's life might be meaningless torture and best ended. For the other, their child's existence could well be limited but valuable and best prolonged. By the same token, the doctors in the Creedon case may not consider that he suffers more than other children they deal with - but is that suffering unbearable for him?

These continual contradictions and dilemmas are the reasons why any attempt to end a child's life must be a difficult and distressing struggle that will probably fail. There is no way to make this easier. In the end there should be no mechanism to lighten the "burden of responsibility" of the parents, or the doctors, or anyone associated with such a child. We have to assume the sanctity of life until in extraordinary circumstances it can be proved that the option of life is worse than death. That decision should be taken with the primary consideration of the interest of that particular individual. It should not be influenced by previous cases; it should not influence future cases.

Inevitably, the publicity following any case where a child in the care of adults dies because of their conscious decision to end that care will shift public perception of what is acceptable. It must not shift the ethical position.

Even in the world of modern medicine, there is mystery. Just as some people survive illnesses against the odds, so others derive peace or some degree of satisfaction in what would be hell on earth for others. The progress of each person's life and death is - despite the illusion of common experience - unique to them. That is both a nightmare and a blessing. It's what makes this case almost impossible to judge and such a dreadful responsibility for those involved.