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Between 2500 and 3000 children under the age of 18 die in Spain every year. The majority die in intensive care units, mainly during the neonatal phase. In other cases, death occurs in hospital units or at home.
Paediatric palliative care is concerned with relieving the specific conditions and symptoms that cause suffering and have a negative impact on the quality of life of both the child and their family. This involves the use of both pharmacological and non-pharmacological methods aimed at relieving suffering but that do not alter neither the course of the underlying illness nor the final outcome. It is about caring rather than curing.
According to the Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), there are four categories of children that ought to receive palliative care:
- GROUP 1: Children whose condition is life-threatening and for whom curative treatment is possible but could fail. Example: children with cancer.
- GROUP 2: Children whose premature death is inevitable but are able to go through long periods of intensive curative treatment with the aim of prolonging their life. Examples: Cystic fibrosis, Duchenne’s disease.
- GROUP 3: Children with a progressive illness without any option of curative treatment. Treatment is exclusively palliative. Example: Type 1 spinal muscular atrophy.
- GROUP 4: Children with an irreversible but non-progressive condition with complex care requirements that create complications and increase the probability of a premature death. Example: Cerebral palsy.
Gliomatosis cerebri is a very rare illness in paediatrics but one that has a very bleak prognosis.
Although this illness is a neoplasm (usually classified as Group 1) because of its progressive nature we are able to classify it as Group 3.
In this case we have to help the patient and their family to confront the illness by helping them deal with the situation as far as is possible, so that they can continue living the fullest possible life. Gliomatosis cerebri in particular tends to be accompanied by a continual loss of the child’s functions.
The awful progression of this illness makes high quality palliative care essential in all cases, especially in those involving children.
With regard to treating the symptoms and the options that may be available, it is vital to have an early treatment in place and to maintain the best possible conditions at all times i.e. an intimate and relaxed environment, avoidance of unnecessary visits, encouraging siblings to take part should they want to, etc. In other words, providing psychological and spiritual support.
When considering the advantages and disadvantages of beginning medical treatment it is of the upmost importance to assess the discomfort that this can cause the child. Not all treatments and diagnostic tests that can be done should be done. This is because they can pose a risk that, depending upon the stage of the illness, could generate very little benefit for the patient, or merely serve to prolong a state of suffering for both the patient and their family without any expected improvements. Therefore, for each stage in the development of the illness appropriate measures are put in place.
Depending on the means at the family’s disposal, measures concerned with the child’s comfort and keeping them company can take place at home if the child and the family so wish. After assessing what stage the illness is at, the possibility and viability of home care can then be considered. As with all illnesses that threaten or limit life, after the patient’s death it is essential to make sure that support for the family is maintained during the grieving process.
Sergi Navarro
Paediatric Palliative Care Team, Sant Joan de Deu Hospital