The Last Crane.
The terminal phase of a life threatening illness may be defined as one where curative treatments are not applicable, but palliation is given. There is evidence that children, even young ones, are usually aware that they are dying. They may pick up these cues from parents and hospital staff, who in one study gave significantly less time and attention to children who were terminally ill than to others. They may not let anyone know that they know. Child and parents may maintain a “mutual pretence,” and yet families who have an open communication fare better psychologically. The refusal of parents and medical carers to talk about issues of death and dying with children who have life threatening diseases impedes coping for the whole family. Parents appreciate hospital staff openness and many years later remember vividly the method of imparting the bad news. Accurate information, delivered with skill and sympathy and updated regularly, lessens the parents’ sense of helplessness and isolation and sets up a therapeutic alliance.
Some Other Pointers:
- Children with life threatening illness often know that they are dying but seldom have the opportunity to talk about it;
- Children are usually less upset when they are cared for at home than in hospital and their long term outcome is better; children’s hospices can provide specialist and respite care if it is needed;
- Both parents and siblings are at risk for psychological disturbance when a child is dying; surviving children may need information, explanation and support;
- When death occurs, siblings and parents may be encouraged to view the body and attend the funeral; and
- Professionals benefit from training in communicating with parents and children faced with the death of a child.
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