In this section
'Palliative care for children and young people with
life-limiting conditions is an active and total approach to care,
embracing physical, emotional, social and spiritual elements. It
focuses on enhancement of quality of life for the child and support
for the family and includes the management of distressing symptoms,
provision of respite, and care through death and
Despite major advances in our capacity to prevent and cure serious conditions of infancy and childhood, there remains a group of children for which cure is not possible. Some children in the terminal phase of illness are known to suffer significantly from
inadequate recognition and treatment of symptoms, aggressive attempts at cure, fear and sadness. 2 The trauma experienced by parents, siblings and the wider family from the death of a child is also profound with increased potential for complicated grief reactions
and impaired long-term adjustment. 3 Effective palliative care provides a direct benefit to the child as well as being an important preventive health intervention for the family, with long term implications for family functioning, mental health, education and
employment. The long-term negative effects of grief have been powerfully confirmed through recent experience with bereaved families as part of the Autopsy Inquiry at the Royal Children's Hospital, Melbourne. 4
Palliative Care has been recognised as a medical specialty since 1987 and has grown into an established field of practice for health professionals of all disciplines. Only recently however have the palliative care needs of children and their families been thought
about in a structured way. Palliative care is less well developed in paediatrics for a number of reasons. Firstly, the number of children dying is relatively small which limits any one individual's exposure to paediatric palliative care issues. This makes the development and maintenance of expertise difficult.
Secondly, palliative care may be needed for children with a range of disorders, many of which are rare and encountered only in paediatric practice. For some children palliative care may be needed from infancy and extend over many years. Children also bring
added dimensions to the developmental, ethical and physiological aspects of palliative care. The involvement of parents as care givers and decision-makers further increases the complexity of care.
The epidemiology of childhood death is different to that of adults. Trauma is the leading cause of death among children in developed countries but a number of children die as a consequence of life-limiting or life-threatening illnesses. It has been estimated that, in developed countries, 0.1% of children have a
life limiting condition. 1 While the prolongation and enhancement of life for these children is an appropriate goal, the principles of palliative care are applicable even early in the course of such conditions to ensure that all aspects of the illness
and its impact on the child and family are addressed.
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