- Ann Goldman
The death of a child has long been acknowledged as one of the greatest tragedies that can happen to a family, and care for seriously ill children and their families is central to paediatrics. It is only recently, however, that the needs for palliative care of children with life limiting illnesses and their families have been considered as a speciality within paediatrics: the most suitable approaches to care are still being developed, and the provision of services nationally is uneven and sometimes inadequate.
Numbers of children with life limiting illness
Annual mortality from life limiting illnesses
1 per 10 000 children aged 1-17 years
Prevalence of life limiting illnesses
10 per 10 000 children aged 0-19 years
In a health district of 250 000 people, with a child population of about 50 000, in one year
5 children are likely to die from a life limiting illness—Cancer (2), heart disease (1), other (2)
50 children are likely to have a life limiting illness, about half of whom will need palliative care at any time
Which children need care?
Fortunately, deaths in childhood that can be anticipated, and for which palliative care can be planned, are rare. A recent joint report by ACT (Association for Children with Life Threatening or Terminal Conditions and their Families) and the Royal College of Paediatrics and Child Health offers the most up to date information about epidemiology (see box of further reading).
Paediatric palliative care may be needed for a wide range of diseases, which differ from adult diseases and many of which are rare and familial. The diagnosis influences the type of care that a child and family will need, and four broad groups have been identified.
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Groups of life limiting diseases in children
Palliative care may be needed from infancy and for many years for some children, while others may not need it until they are older and only for a short time. Also the …
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