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About palliative care

• What is Palliative Care?
• How is palliative care different in paediatrics?
• Transition to palliative care
• The Victorian Paediatric Palliative Care Program
• Best Practice in paediatric palliative care
• Myths about palliative care
• Place of care

What is paediatric palliative care ?

‘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 bereavement.’ 1

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.

References

1. Association for Children with Life Threatening or Terminal Conditions and their Families and the Royal College of Paediatrics and Child Health. ‘ A Guide to the Development of Children’s Palliative Care Services’ London 1997.
2. Wolfe J, Grier HE, Levin SB, et al. Symptoms and suffering at the end of life in children with cancer. NEJM 2000; 342: 326-333.
3. Rando TA. An investigation of grief and adaptation in parents whose children have died from cancer. J Pediatr Psychol 1983; 8: 3-19.
4. Monagle P, Robb B, Driscoll S, Bowes G. Organ Retention following paediatric and perinatal autopsy. Where to from here? J Paed Child Health 2002 (in press)

Resources

• Doyle D, Hanks GWC, MacDonald N (Editors). Oxford Textbook of Palliative Medicine. (2nd ed.) Oxford University Press.UK.1999.
• Field MJ, Behrman RE (Eds). When Children Die: Improving Palliative and End-of —Life Care for Children and their Families. National Academy Press. Washington. 2002-09-22
• Association for Children with Life Threatening or Terminal Conditions and their Families and the Royal College of Paediatrics and Child Health. ‘ A Guide to the Development of Children’s Palliative Care Services’ London 1997
• Goldman A. Care of the Dying Child. Oxford University Press. London 1998
• Children’s International Project on Palliative/Hospice Care Services. Compendium of Pediatric Palliative Care. National Hospice and Palliative Care Organization. US 2000. (www.nhpco.org)
• Palliative Care Australia
• Very Special Kids
• Royal Children's Hospital
• Therapeutic Guidelines