Principles of children’s palliative care
Palliative care for children requires consideration as a distinct and different speciality involving those experienced in children’s services. The unique issues which need to be taken into account when planning palliative care services for children are outlined below:
- There are a wide variety of childhood conditions causing death before adulthood, many of which are rare.
- Many of the illnesses are familial; there may be more than one affected child in the family and genetic counselling may be required.
- The time span of children’s illness may be different from adults; palliative care may extend over many years.
- Children continue to develop physically, emotionally and cognitively, this affects both their medical and social needs and their understanding of disease and death.
- The care of children with life limiting conditions should be holistic and multi-disciplinary. This requires a range of services and the skills of those trained and experienced in the care of children. (ACT/RCPCH 1997) In all settings children should be cared for in a child-centred environment.
- It should be acknowledged that families are the prime careers and that home is the centre of caring (ACT 1993). Services should be co-ordinated to provide flexible, comprehensive support for the whole family, including siblings. (ACT/RCPCH 1997: DoH 1998).
- Different aspects of the palliative care package are delivered by a wide range of services and agencies across health, social and voluntary sectors. This requires close liaison and effective networking to deliver care in a co-ordinated way.
- Provision of education to sick children is essential and a legal entitlement. This adds to the complexity of care provision.
- Legislation and Government initiatives concerning the care of children do not coincide with those relating to adult services. Lobbying pathways and funding sources for palliative care for children are, therefore, mostly different from those for adults.
- Staff in all settings should have training and experience in the care of children. Formal training in palliative care for children, though increasing, is not yet widely available and this has a bearing on the setting of standards.