Paediatric palliative care is about improving the quality of life of infants, children and young people diagnosed with life-limiting illness and supporting those who care for them. Being cared for by palliative care does not mean that a child is dying, in fact many children with life-limiting illness live into adulthood, but palliative care helps them to live as well as possible.
Quality care in this context enables the child to live in an environment where curative treatment can be a part of their life, but not their entire focus. Palliative care aims to provide the best quality of life through a holistic approach which supports the physical, emotional, social, cultural and spiritual aspects of the child and their family.[1]
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. [2]
The World Health Organisation’s definition for paediatric palliative care includes the principles:[3]
- 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.
There are unique characteristics of paediatric palliative care that differentiate it from adult palliative care, including: [4-5]
- Care is child and family-centred
- The family has an increased role in decision-making
- The child usually remains under the care of their primary treating team
- Perinatal palliative care can be provided alongside antenatal care
- Care is provided across a wide range of care settings, and children can have disabilities that have a compounding effect on palliative care needs, as well as healthcare coordination and communication
- Predicting a prognosis can be difficult
- The number of children dying is smaller so health professionals may be less familiar with providing palliative care
- Each child is learning, growing and developing along a continuum toward adulthood which requires consideration of social, emotional, spiritual and cultural needs
- A child’s ability to communicate and understand varies
- The provision of education and play is essential
- When parents withdraw partially or completely from the workforce to become caregivers, this can have life-changing financial effects for the family
- Siblings are vulnerable and require individualised support
- Grandparents are at risk of ‘doubled worry’: worry about the wellbeing of the child with the life-limiting illness, and worry about their own child (the parent of the ill child)
- Conditions are sometimes familial: other children in the family may be affected by, or have died from the same illness
- There can be numerous, evolving losses experienced throughout the illness trajectory requiring grief and bereavement support prior to death
- The death of a child can lead to an experience of prolonged or lifelong grieving for the child’s parents.
Thinking Points
- List key physiological differences between children and adults that can have implications when caring for a child with a life-limiting illness.
- In the context of your own discipline or profession, list examples of how you would apply the following principles of paediatric palliative care in your practice:
- Providing a family-centred approach to care
- Providing care based on each child’s developmental needs.
References
- Paediatric Palliative Care Australia and New Zealand. 2023. A Practical Guide to Palliative Care in Paediatrics.
- Together for Short Lives. 2024. Together for Short Lives: What is children’s palliative care
- World Health Organization. 2023. Palliative Care for Children.
- Therapeutic Guidelines. 2023. Principles of Paediatric Palliative Care. Melbourne.
- Palliative Care Australia. 2018. Paediatric Addendum – Palliative Care Service Development Guidelines.