When Children Die: Improving Palliative and End-of-Life care for Children and their Families
Authors: T L Chambers
Journal: Journal of the Royal Society of Medicine (2003)

The dying and death of a child has been portrayed (exploited?) widely in the written and visual arts. Sir Luke Fildes's The Doctor must hang on many more walls than mine. Who could have remained indifferent to the images of child suffering and death that we saw in newspapers and on the television during the recent conflict in Iraq? The philosophical and theological problem of suffering repeatedly demands attention when such dreadfulness is before our eyes. Although many religious, redemptive and secular explanations and rationalizations are offered, I see it as a matter whose resolution is so personal and experiential that it becomes part of our individual Weltschmerz. The outlook of dying persons and those who care for them may be so removed from the understandings, feelings and ambitions of their health attendants as to create a scarcely bridgeable gap. There may not even be an agreement on names. Recall this masterly exchange in Brideshead Revisited when Lord Marchmain's mistress describes his final illness:

‘What is it?’

‘His heart; some long word at the heart. He is dying of a long word.’

Has this separation contributed to the neglect of what is in truth a central element of medical care? The doctor treating a patient of any age has a responsibility to give as high quality care at the end of the disease's journey as at the start. The modern view is that this task should be shared with other groups who can offer spiritual and social help, and that patient and carers should participate as fully as possible.

When Children Die is a report into end-of-life care of children in the USA. The detail will be of most value to American readers but its emphasis on principles of child and family centred care gives it a universal message. The strong ethical and legal grounding and the importance attached to research and audit are impressive. The authors caution rightly against sanctifying clinical protocols in a way that leads to their unthinking use. At the end of my life, heaven defend me from healthcare workers who follow protocols to the letter: the hallmark of professionals is their ability to use judgment within the breadth of good practice and conventions of consent. Nor should the care of terminally ill patients become a narrow craft, practised only by the cognoscenti whose mysterious arts are closed to outsiders. Its principles should be part of the repertoire of any physician who deals with mortal illnesses. Back to Waugh and The Loved One: it would be calamitous if the palliative care and hospice movements for adults and children became so precious and unworldly that they were as soft a target for parody as Forest Lawn.

Primary-care trust chief executives, please use this vademecum to inform your commissioning of services for the sickest of children and most desolate of parents. You will not have many, but be generous to these few, giving them the scope and quality of care that you would expect for your own children. And let us remember that for families in the wider world the experience is no different from ours. Whether the process is drawn out and enervating or quick, brutal and unexpectedly devastating, the disparity in societies' willingness and ability to respond to human tragedy is deplorable. Whatever the circumstances, a dying child deserves competence, respect, compassion, tenderness and silent tears.