Children who are terminally ill, whilst they are still able, may benefit enormously from normal routines such as attending school. This can present challenges for the school community. Sensitive but honest communication between the family and professionals involved, will overcome most of these, hopefully enriching the lives of all those who come into contact with the child or young person. Suggestions on how to manage such situations are given below.
Children who are constantly in and out of hospital, welcome attending school as an opportunity to have some normality in their lives. Continuing to take part in school routines as much as possible can give a feeling of achievement, with the emphasis on living rather than dying. It can also give back a sense of identity as a person rather than a patient.
Classmates who have had the situation explained to them are usually supportive. It often helps to involve them by giving jobs such as wheelchair pushing. Try to ensure these tasks are shared and do not become the responsibility of just one child.
The school and family, including the sick child, need to decide together how to share the news that a pupil is terminally ill. Is it not easy, but an open and honest approach is usually the best way. However much adults try to hide what is happening, children instinctively know something is wrong and will often have worked out that a class member is dying before being officially told. Telling only the immediate peer group may seem like a good idea but the grapevine will take over resulting in gossip and half-truths throughout the rest of the school.
If the child is receiving treatment from a local hospice or hospital, there is often a nurse or social worker whose job includes visiting schools to explain to pupils about a friend's illness and treatments involved. This should help alleviate any worries that fellow pupils may have. It is helpful for the school to at least identify the key professional responsible for the ill child and how to contact them for advice and support.
Children deal with difficult situations much better when truthful explanations are given regarding absences, changing appearance, lack of energy, treatments and exclusion from activities such as sport. Being naturally curious, classmates will ask questions, these should be answered sensitively but factually. Seriously ill children are often extremely knowledgeable about their illness and may well be happy to provide the answers themselves.
A sense of normality is further maintained by continuing to expect usual standards of behaviour within the child's limitations. This helps to reduce feelings of favouritism amongst other children.
Other parents and carers at the school may have concerns surrounding their own children being upset or made anxious by a classmate who is seriously ill. Reassurance that children and young people will have fewer anxieties if presented with the truth, rather than having to make up what is happening, may help. With consent from the family of the sick child, information on the illness and treatments will help other parents and carers to understand and feel informed. The realisation that their children are contributing to an increased quality of life for the sick child may create a more positive approach. Offer information on what to say to children when someone is dying.