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Learning modules

Activity 4: Paediatric palliative care concepts

Definition and standards in paediatric palliative care

The World Health Organisation’s definition for paediatric palliative care includes the principles of:

  • palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family
  • it begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease
  • health providers must evaluate and alleviate a child's physical, psychological, and social distress
  • effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited
  • it can be provided in tertiary care facilities, in community health centres and in children's homes. [1]

Palliative care standards [2] for children remain the same as they do for adults, with some care priorities that have particular significance including:

  • involving the whole family in the child’s care
  • involving allied health professionals with specialised skills
  • supporting families to care for their sick child as well as other siblings
  • individualising responses to the child's care needs. [3]

Some unique aspects of palliative care for children include:

  • smaller number of children requiring palliative care
  • wider, more diverse range of conditions
  • each child’s developmental factors need to be considered with their care
  • different physiology and pharmacokinetics
  • parents often involved in decision making
  • siblings require developmental appropriate individualised support
  • child’s life-limiting illness has profound effects on all aspects of family life
  • most children with life-limiting conditions are cared for at home
  • the death of a child has profound and prolonged effects on family members and family life, as connections with the child continue after the child's death. [45]

Children with a life-limiting illness can have disabilities that have a compounding effect on their specific palliative care needs.

Thinking points


REFERENCES

1. World Health Organisation. (1998). WHO Definition of Palliative Care for Children. Retrieved May 23, 2012, from www.who.int/cancer/palliative/definition/en/.

2. Palliative Care Australia. (2005). Standards for providing quality palliative care for all Australians. 4 ed, Canberra: Palliative Care Australia. Retrieved November 6, 2012, from http://palliativecare.org.au/national-standards-assessment-program/.

3. Palliative Care Australia. (2010). Journeys: Palliative Care for Children and Teenagers, Canberra: Palliative Care Australia. Retrieved October 15, 2012, from http://palliativecare.org.au/teenagers-and-children/.

4. Caresearch. (2010). Paediatrics. Retrieved November 17, 2012, from www.caresearch.com.au/caresearch/tabid/737/Default.aspx.

5. Royal Children's Hospital Melbourne. (2010). Palliative Care: Paediatrics. Retrieved October 18, 2012, from www.rch.org.au/rch_palliative/About_palliative_care/.