Allowing a small and very sick baby to die is one of the most poignant decisions paediatricians and parents have to make. Just how difficult and subjective that decision is I discovered when, a number of years ago, I became responsible for a paediatric intensive care unit, and did a ward round with the departing specialist.
There were five babies, three on ventilators because of brain damage. Astonished, I asked: 'Why are you keeping these babies alive? They 'died' at least a month ago and you're keeping them alive for nothing.'
'They are your responsibility now,' he said. 'You do what you think is correct.' After discussion with the parents, nurses and doctors concerned, we turned the machines off. A year later, when I was leaving that ward, the doctor taking over made the same point to me: why were severely brain damaged babies who would not be able to survive independently being kept on ventilators?
In that highly intense year I had lost my perspective. Children I had been struggling to keep alive had become my charges, with whom I had sat up day and night, trying to win some sort of battle that I had set myself. I had found it impossible to say, 'no more'.
It is difficult to play the two parts at the same time - that of an objective, sympathetic and humane person and that of the specialist technician. The care and treatment of extremely sick infants needs two individuals: one with an overview who can weigh the pros and cons of continuing care, discuss the consequences with parents in an unbiased way and who can comfort and support them, whatever the decision. The other has to be a superb technician with a total determination to succeed with those babies who, after careful consideration, have been thought to have the best chances of surviving without brain damage or handicap.
As someone who has run intensive care units both for newborn and older children, I have often wept when coming to the decision to allow a child to die. Not because it was not right, but because I felt inadequate to the task of informing, supporting and helping the parents. Day after day they have longed and hoped for a recovery, while the nurses and doctors have done everything to achieve it.
The strain on staff carrying out this kind of work has been highlighted in the British Paediatric Association's report on staff shortages in intensive care units (Independent, 25 November). In addition, with new medical technologies we have the ability to keep increasingly sicker and smaller babies alive: babies weighing 500gm and born at 23-25 weeks' gestation (a normal pregnancy is 40 weeks and normal baby weight is 3,000-3,500gm).
Among these small babies are those who will be normal and those who will end up profoundly handicapped - who will have convulsions every hour, a mental age of a few months, who will always need spoonfeeding and a tube in the neck to breathe through. Such babies face a lifetime of total dependency requiring constant care. Recent research indicates that 50 per cent or more of the smallest babies will have some form of handicap.
The NHS has only limited resources. If we keep ever-increasing numbers of tiny babies alive, the cost, not just of the technology but of providing a lifetime of nursing support in the community, has to be found from other services. Do we take the funds from children with cancer, with heart problems, with severe behaviour difficulties? It has to be taken from somewhere.
The 'right-to-die' dilemmas are many. Neonatal specialists would correctly claim they have only learnt to save smaller and smaller babies through practice. But this success has been achieved by experimentation and at the expense of a number of handicapped babies who would otherwise have died. Do we need to ask the parents of these children, after 20 years of struggle and devotion, whether they thought it was worth it? Do we present a fair, unbiased picture of what the future really holds for the parents of a baby born at 23 weeks? Do we put so much emphasis on living that it makes it almost impossible for parents to make a decision on their child's right to die?
The dilemmas have become too important to leave to doctors: society must join in this debate. The issues raised in Children's Hospital tonight are just a beginning.
The author is a consultant community paediatrician and consultant in public health medicine.
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