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Parents' views critical at the end of a child's life

20 February, 2013

More emphasis should be given to parents' needs when deciding whether or not to withdraw life support from critically ill children, according to a new book written by a University of Adelaide academic.

The book, published by Oxford University Press, deals with advances in brain scans and other technologies, and their influence on decisions about life support for children in intensive care.

It recommends the development of new international guidelines for the medical profession when making decisions about withdrawing life support for children. These include very premature babies, those with severe brain damage or developmental problems, or those that have suffered major injuries.

"Existing guidelines for decision-making about infants and children are vague and difficult to apply in practice, even when we know what the child's outcome will be," author Dr Dominic Wilkinson, Associate Professor of Neonatal Medicine and Bioethics with the University of Adelaide's Robinson Institute, said.

In his book, Death or Disability? The 'Carmentis Machine' and decision-making for critically ill children, Associate Professor Wilkinson builds on his years of experience in newborn and paediatric intensive care.

"Unfortunately for parents and guardians, current guidelines are ambiguous about the role they play in decisions. They seem to imply that parents should be involved, but because the guidelines are focused on the child's best interests, they discourage doctors from seeking parents' views, or considering the best interests of the family as a whole.

"We need to make sure that the parents' decision-making role is formalised in guidelines, and that they have a real say in what happens to their child. Parents also need greater support in this role."

Associate Professor Wilkinson's book sets out a framework for decision-making, and identifies an upper and lower threshold for parents to make decisions about extending their child's life or withdrawing life support.

"While the parents' wishes are very important, there also needs to be a point at which clinicians are able to say: this child's outlook is so poor that we should not prolong his or her life with advanced medical technology, even if the parents wish us to; or that despite the parents' wishes to withdraw life support, we think that treatment would help the child and should be provided," Associate Professor Wilkinson said.

"Thanks to technological advances, our ability to sustain life is greater than it has ever been, and this will improve as advances continue. However, this also raises serious ethical questions about extending life, and what that means for the quality of life of both the child and the family. Improved guidelines for the medical profession would go some way towards addressing this."

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