Coordination of palliative care for children

The coordination of palliative care for children should take a family centred approach and empower the family to care for their child. Decisions about care should be made in collaboration with the family.

Continuity of care is very important to families who have a child with palliative care needs, including consistency in the approach to care taken by the different healthcare professionals involvedGuthrie, 2008. This is particularly important when there are changes in the place of care; for example, moving a child from a neonatal unit or hospital to home, or from a tertiary hospital to a metropolitan or regional hospital.

Families often find it helpful to have one point of contact for enquiries during office hours. This person may be known as the care coordinator or key worker, and may be a nurse, social worker, paediatrician or general practitioner. The coordinator liaises with other healthcare professionals to address any patient or family concerns, and may adjust the management plan, if required. It is helpful to provide the family with a written plan that includes information about any anticipated problems or symptoms, and particularly how to obtain advice or assistance after hoursBradford, 2012.

For general information about coordination of care, see Who provides palliative care?.