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Learning modules

Activity 4: Paediatric palliative care concepts

Definition and standards in paediatric palliative care

“Palliative care for children and young people with life-limiting or life-threatening conditions is an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life and death. It embraces physical, emotional, social, and spiritual elements, and focuses on enhancement of quality of life for the child/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.” [1]

The World Health Organisation’s definition for paediatric palliative care includes the principles of:[2]

  • 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.

Palliative care standards for children remain the same as they do for adults, with some care priorities that have particular significance including: [3]

  • All children and families/carers are unique, and no illness, child, family or situation is the same
  • Paediatric palliative care aims to provide the best quality of life for children and adolescents with life limiting conditions
  • Palliative care services for children, adolescents and their families/carers should be delivered when needed, in the form needed and in the place of their choosing
  • Palliative care is a necessary element in the treatment of children and adolescents with life limiting conditions
  • Accessing palliative care services does not mean that hope has been abandoned.

There are unique characteristics of paediatric palliative care that differentiate it from adult palliative care that warrant special consideration for service planning and resource allocation. Some of these characteristics include: [4, 5, 6]

  • smaller number of children requiring palliative care
  • wider, more diverse range of conditions
  • the whole family are involved in care and often involved in decision making. Families require support to undertake these roles
  • allied health professionals with specialized skills required to meet unique needs
  • each child is learning, growing and developing and the provision of education and play is essential and care tailored to their developmental factors
  • paediatric physiology and pharmacokinetics differ to adults
  • siblings require developmental appropriate individualised support
  • care is often provided in the child’s home
  • children with a life-limiting illness can have disabilities that have a compounding effect on their specific palliative care needs
  • children with a life-limiting illness can have disabilities that have a compounding effect on their specific palliative care needs.

 

Key Resource

Paediatric Addendum – Palliative Care Service Development Guidelines

 

Thinking points


REFERENCES

1. Together for Short Lives. Introduction to children’s palliative care. 2019 [cited 2019 April 1]; Available from: https://www.togetherforshortlives.org.uk/changing-lives/supporting-care-professionals/introduction-childrens-palliative-care/.

2. World Health Organization. Definition of Palliative Care for Children. 2019 [cited 2019 April 1]; Available from: http://www.who.int/cancer/palliative/definition/en/.

3. Palliative Care Australia. Paediatric Palliative Care Position Statement. 2015  [cited 2019 April 1]; Available from: https://palliativecare.org.au/health-professionals-resources/diagnosis.

4. Palliative Care Australia. Paediatric Palliative Care. 2019 [cited 2019 April 1]; Available from: https://palliativecare.org.au/health-professionals-resources/diagnosis.

5. Therapeutic Guidelines Ltd, Principles of paediatric palliative care. 2019: Melbourne.

6. Palliative Care Australia. Paediatric Addendum – Palliative Care Service Development Guidelines. 2018  [cited 2019 April 1]; Available from: https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2018/12/PalliativeCare-Paediatricaddendum-2018_web.pdf