Principles

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Children’s palliative care and its means of delivery are very different from adult palliative care for several reasons:
1. Number of patients is relatively low. Number of fatal cases is low compared to treatable cases.
2. Broad range of pathological conditions: neurological conditions, chromosomal aberrations, metabolic, cardiovascular, respiratory and infectious diseases, malignancies, perinatal complications, traumas.
3. It is not always possible to give a precise prognosis regarding rare diseases and conditions, some of which are not even subject to precise diagnostic tools. Many individual cases are rare, particularly, if the diagnosis is specific to the paediatric population; though it is possible that a child will reach early adulthood (19 years or more).
4. In general, the timeframe for children’s diseases is different from that of adult diseases: palliative care may last for a few days, a few months or even several years.
5. Limited availability of drugs for children: most of the medicines have been developed for adults, they are not adapted for children and so there is a lack of data on safety, indications and dosage for children.
6. Care is dependent on the child’s development. Children are constantly developing physically, emotionally and cognitively, and this affects every aspect of their treatment and care. The provider of children’s palliative care should take into account, and respond to, their development progress, which is reflected in their communication and understanding of their disease, therapy and prognosis.
7. Family’s role: parents (legal custodians) are responsible for decision-making regarding their children’s treatment, ethical and social choices.
8. Care is for the whole family. The parents and siblings of an ill child are particularly vulnerable. Parents carry a great responsibility for both their own and their child’s care.
9. Emotional side: when a child dies, it is very hard for parents and care providers to accept the failure of the treatment, the irreversibility of the disease and death.
10. Grief: frequently the period of grief after a child’s death is hard, long and complicated.
11. Legal and ethical matters: parents (legal custodians) represent the child. Unfortunately, the child’s rights and wishes in decision-making are not always respected. The child with the medical condition has legal rights and a need for education and play.
12. Social consequences: for neither family nor child is it possible to maintain their former style of life (school, work, income, level of expenses, etc.).