On this page you'll find information on defining paediatric palliative care (PPC),
PPC in Australia, and common terms.
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What is
Paediatric Palliative Care?
Paediatric palliative care is the care provided to a child facing a life-threatening or life-limiting condition, and their family. Medical care in this palliative context focuses on enhancing comfort and quality of life through specialised attention to pain and symptoms, with a focus on what matters to that child and family. Paediatric palliative care also goes beyond medical care, wrapping around the family unit to support their emotional, social, and spiritual wellbeing. Palliative care can be introduced alongside care that is aiming to cure the underlying condition, embodying the ethos of ‘hoping for the best, preparing for the rest’. Paediatric palliative care can be introduced as early as pregnancy (perinatal palliative care) and extend into adolescence and young adulthood (AYA), when, if the condition is expected to continue, young people are supported to transition to the adult health sector. Palliative care also includes grief support for families when a child dies. There is no requirement for death to be expected within a certain timeframe in paediatric palliative care, and care frequently extends over years.
The World Health Organization defines four categories of life-limiting conditions:
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"Life-limiting conditions for which curative treatment may be feasible but can fail. Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of that threat to life. On reaching long term remission or following successful curative treatment there is no longer a need for palliative care services."
Category 1
"Conditions where premature death is inevitable. There may be long periods ofintensive treatment aimed at prolonging life and allowing participation in normal activities."
Category 2
"Progressive conditions without curative treatment options. Treatment is exclusively palliative and may commonly extend over many years."
Category 3
"Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death. Children can have complex healthcare needs a high risk of unpredictable life-threatening event or episode, health complications and likelihood of premature death."
Category 4
Australia's Paediatric Palliative Care Landscape
In Australia, specialist paediatric palliative care teams are based in the state health systems of Queensland, New South Wales, Victoria, South Australia and Western Australia, organising their services to also support needs in Tasmania, ACT, and Northern Territory. As well as serving patients in hospital, these teams use telehealth to provide care and ‘pop-up’ visits to upskill local teams when they are caring for a child in palliative care.
Australia has children’s hospices in Brisbane, Melbourne, and Sydney, and an Adolescent and Young Adult Hospice in Sydney. Hospices are available for short break respite stays as well as end of life care and emotional support, including in bereavement, and many also provide in-home care. Some of our hospices are part of a state or territory health service while others are run by not-for-profit non-government organisations, but all have strong connections to specialist palliative care services.
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Australia is estimated to have almost 29,000 children who could benefit from palliative care, most of whom have non-cancer conditions (Bowers et al, 2020). Life-limiting conditions are most prevalent in the first year of life (Bowers et. al, 2020), and almost 40% of children with a life-limiting condition have complex needs (Palliative Care Australia, 2018).
Common Language
Across this website you might find some of these terms, which are useful to understand:
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Palliative Care- Holistic care of the child patient and their family, considering factors such as the child's physical health and comfort, and the child and family's psychological distress, spiritual wellbeing, and experiences. Palliative care is ideally introduced early in the experience of care, when a condition is known to be life-threatening or life-limiting.
Life-threatening Condition- A health condition which may result in death, be cured, or continue whilst not reducing life expectancy.
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Life-limiting Condition- A health condition which is expected to lead to death.
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Paediatric Palliative Care- Palliative care provided to a child from the perinatal period through to young adulthood.
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Specialist Palliative Care- Care provided by multi-professional clinicians who have specialised through their training and work experience in palliative care, and work on a palliative care team.
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Non-specialist Palliative Care- Care provided by multi-professional clinicians who are supporting someone with their palliative care needs but also provide care in a multitude of contexts, e.g., general practitioners, community physiotherapists, community psychologists.
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Perinatal Palliative Care- Palliative care provided from pregnancy through to newborn.
Adolescent and Young Adult (AYA)- varying definitions exist, in Australia this is largely viewed as 12-25 years of age.
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Family or Kin- The people identified by the child and caregivers as their family or kin, not necessarily their biological family. ​
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Consumers/ People with Lived Experience- In much of health and research, 'consumer' is the word used for patients and their families. Wherever possible, we try to use the term 'people with lived experience'.