What is palliative care for children?
It is estimated that worldwide there are 22 million children (0-17 years), 30,000 in Italy alone, with child-specific palliative care needs.
Paediatric palliative care is the active and global care provided to babies, children and adolescents with life-threatening or life-limiting illness for which curative treatment may fail or is not is available. It focuses on the enhancement of quality of life by relieving distressing symptoms and pain, and provides support for the whole family unit.
Paediatric palliative care is delivered by a multidisciplinary care team comprised of doctors, nurses, physiotherapists, psychologists and social workers and pastors. It is primarily directed at addressing the patient and family’s needs but also involves the local community.
Paediatric palliative care is provided for wide range of serious paediatric conditions many of which are rare or without a diagnosis. The specific nature of the child’s illness, age, developmental stage and ability to communicate necessitate an individual care plan tailored to the child and family’s needs and wishes. The multidimensional approach encompasses all the complex clinical, psychological, ethical and spiritual aspects that extend from the diagnosis of a serious condition through the advanced stages of the illness and death; it also foresees bereavement support for the family through the grieving process.
For many years, the term ‘palliative care’ was associated exclusively with the end-of-life phase; it was often viewed negatively as ‘giving up’ on the patient or inaccurately likened to a form of euthanasia. These misconceptions and our cultural refutation of childhood illness and death have acted as barriers to the development of paediatric palliative care services. Consequently, only a limited number of children with incurable illness are able to access the clinical, psychological and spiritual support to which they are eligible (Benini & Gangemi, 2011).
In Italy, the law 38/2010 stipulates the criteria for the development of paediatric palliative care networks throughout the country.
Who is eligible for paediatric palliative care?
Paediatric palliative care is aimed at neonates, children, adolescents and young adults with a life-limiting or life-threatening illness and their families. Palliative care delivery should begin at diagnosis and can be given alongside active treatments aimed at cure or prolonging life. The childhood conditions requiring palliative care differ from those of the adult, they are multiple and wide-ranging, the duration of care is variable and difficult to predict. Palliative care is commonly associated with cancer patients but only one third of the total population of children with palliative care needs have cancer.
The pathologies eligible for paediatric palliative care services include:
- genetic disorders,
- neurologic disorders,
- heart and lung pathologies,
- irreversible organ failure,
- disability due to acute brain trauma and/or spinal cord injury.