When life costs too much

ONCE, the suffering and death of children were accepted as a regrettable but almost inevitable part of life: before the development of antibiotics and vaccination, their bodies were specially vulnerable to infection, particularly from the great killer diseases such as diphtheria and pneumonia. Today, a child's death is seen as the result of exceptional misfortune. In a way that would have seemed incomprehensible to earlier generations and would still seem so to the inhabitants of many Third World countries, we take a child's "right" to life so much for granted that we regard an early death almost as a defiance of natural law. So, when we are told that the National Health Service, one of the few remaining sources of national pride, has declined to spend £75,000 on an attempt to prolong a 10-year-old's life, we are outraged.

But, before we are overwhelmed by indignation at the fate of Child B - "Sentenced to Death" according to one newspaper headline yesterday - we should recall the case of Laura Davies, a child from Eccles born in April 1988 with a bowel outside her body. She spent the first year of her life in hospital, fed a liquid diet through tubes and attended by two surgeons, a gastroenterologist, two nursing sisters, a social worker, a dietician and a child psychiatrist. She survived, miraculously, beyond her fourth birthday but she needed a multi-organ transplant, an operation that no one is reported to have survived for more than a year. Her British doctors advised that nothing more could or should be done. But Laura's parents, helped by funds raised in a public appeal, took her across the Atlantic to Pittsburg where, for £1m, two huge operations were carried out. She died in November 1993 amid public mourning.

In all such cases, several questions are asked: Will treatment significantly improve the child's chances of survival? If the child does survive, will it enjoy an adequate quality of life? Can the suffering caused by the treatment itself be justified? And can the treatment be afforded? In debates about health service rationing these are sometimes treated as if they were distinct questions, to which objective answers are available. In reality, the questions are inseparable and the answers subjective. In Laura Davies's case, the answers to all the questions, according to most medical assessments, were "no". In the child's last months, even her parents seemed to have second thoughts. Yet the public support for her cause was enormous. Nobody can quantify suffering or quality of life. No computer program on Earth can balance, to everybody's satisfaction, a two per cent chance of survival against the pain of six months' chemotherapy. Nor can it balance the merits of a £75,000 operation for a child against the 30 ulcer operations that would cost roughly the same amount. (Whose ulcer? A young mother's? An old man's? Virginia Bottomley's?) That is why the arguments over whether Child B's fate were decided on clinical or financial grounds are largely spurious.

Rationing of health care, as of any scarce commodity, has always existed - by waiting list or by price. But the choices have become harder. Advances in medical technology allow life-saving operations that would have been impossible 20 years ago, but only at enormous cost. Some decisions look easy: if you want to get rid of your bat ears, pay for it yourself. Other decisions are heartbreaking. The American state of Oregon consulted the public on the priorities that should be given to 709 medical conditions and their treatments. The legislature then voted to fund the top 587. Babies weighing less than 1lb 1oz fall below the funding line. That sounds brutal; but, with a week in intensive care costing £4,000, hospitals in Britain are debating similar limits.

Politicians have long preferred to bury the arguments about rationing, pretending that all decisions made by doctors are purely clinical ones. The Government's NHS market has simply muddied the waters further, creating a system that has become so complex and so bureaucratic that nobody understands who is deciding what and why. Health priorities deserve an open public debate but nobody should pretend that decisions can ever be cut and dried. Medicine, it is sometimes forgotten, is at least as much an art as a science.