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Despite a great deal of effort and many articles addressing the end-of-life care of children and adults in intensive care units,1 2 paediatricians continue to be confronted by parents wanting “everything done”. Such an appeal is often construed by nursing and medical staff as an unreasonable demand and generates emotion and resentment in all parties. Indeed discussion of end-of-life care of children in intensive care is now so coloured by such experiences that it is dominated by words of negativity such as failure, futility, withdrawing and withholding. The grand tradition of paediatric medicine and nursing, however, is that of positive caring for children and families in just these circumstances; in the words of William Osler: “Amid an eternal heritage of sorrow and suffering our work is laid”.3 It is in this context that I would suggest that there needs to be a reframing of the way we talk about and understand the experience of these children and their families. One approach is to use the language of palliative care in which such care is more than symptom control, comfort and terminal care but instead a credible way of being able to confront the plea for “everything to be done” with an answer, not of negativity, but of affirmation and commitment. Although this way of thinking and talking will not resolve all conflict, it does bring with it the possibility of bringing these discussions out of the cul-de-sac of anger and frustration in which they seem to be trapped.
To understand how this way of thinking might be applied, it is instructive to recognise the attitude and approach of staff as it begins to be obvious to them that a cure is no longer possible. In this situation the treating strategy tends to follow this sequence:
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