First published 26 August 2021
- Palliative care for children begins at diagnosis, not just end-of-life
- Tasmania and the Northern Territory have no dedicated specialist paediatric palliative care services
- Paediatric palliative care must be child-centred and include support of the family
QUT Associate Professor Stuart Ekberg, from Centre for Healthcare Transformation, said palliative care aimed to improve the quality of life of people with life-threatening or life-limiting illness, and their families.
“It is estimated that as many as 21 million children around the world would benefit from paediatric palliative care,” Professor Ekberg said.
“Paediatric palliative care begins at the moment of diagnosis, not just at the end of life for a child and aims to alleviate symptoms as well as enable the child to have the best quality of life possible and support the child’s family.”
Professor Ekberg said Australian information made up the second or third highest proportion of literature sources analysed, with the majority of sources from the United States.
“Australia has dedicated specialist paediatric palliative care services in Queensland, New South Wales, Western Australia, South Australia, and Victoria and the Australian Capital Territory,” he said.
“Tasmania and the Northern Territory have no dedicated specialist paediatric palliative care services.
“Children’s hospices are few and far between – Queensland has Hummingbird House, opened in 2016; Victoria has had Very Special Kids since 1996 and Bear Cottage in New South Wales has provided hospice care since 2001.
“Western Australia’s first children’s hospice is expected to open in 2023.”
The literature reviewed showed how palliative care needs for children were different from those for adults.
“As children are still physically developing and growing, they have different needs according to their developmental state, their life-limiting condition, and its treatment,” Professor Ekberg said.
“One important difference is that children may have conditions seen only in childhood. More than half of life-limiting conditions in children are neurodegenerative and metabolic disorders, genetic conditions and congenital anomalies, cardiovascular and respiratory diseases and acquired brain injuries.
“These conditions often have an unpredictable illness trajectory whereas adults in palliative care have conditions related to lifestyle and ageing such as cancer, cardiovascular disease and dementia.”
Professor Ekberg said Australia’s vastness was a major challenge to delivering equitable access to children’s palliative care.
“We have seven specialist paediatric palliative care services and three dedicated children’s hospices to cover an area of 7,688,287km2 including 32,160km2 of islands.
“When compared to people in major cities, those living in regional, remote and very remote areas of Australia have limited access to health, hospice and support services.
“Our report outlines the challenge of our culturally and linguistically diverse populations of Australia, including Aboriginal and Torres Strait Islander populations who have poorer health and outcomes compared with non-Indigenous people.
“To improve access to and the experience of palliative care, it is vital to address barriers such as lace of awareness of palliative care, language and communication difficulties, racism, discrimination and cultural stereotyping.
“In summary, the literature review covered eight key areas to improve through the National Action Plan:
- quality of services in the community and acute care
- access to services
- uptake of advance care planning
- skills of the workforce, parents, carers, patients, and siblings
- research and data collection
- collaboration between States/Territories and the Commonwealth
- knowledge of paediatric palliative care across the community
- dissemination of information.”