In critically ill children, uncertainties about the future often provoke a profound sense of loss of control. Studies show that children wish to be informed about their illness and plans for treatment. Although children’s information needs may be age-dependent, most will worry about the impact of the disease and medical treatments on their daily lives and on others around them.
Cancer is the most common cause of non-traumatic death in children,resulting in 2,200 deaths out of a total of 30,000 pediatric deaths annually. Approximately 25% of children diagnosed with cancer will die.
The Importance of Discussing Dying with Children
When a child is diagnosed as terminally ill it can be very hard for parents to discuss this diagnosis with the child. Children should be given honest and accurate information about their illnesses and explanations of specific treatments, medications and the exact name of the illness. Many children feel more in control when they have more information. This is not an easy conversation, but it is important as it will allow children to prepare for the future and decide how they would like to proceed.
The following strategies can be used as a guide for communicating with dying children:
- Determine what the child already knows and wants to know about the illness. Exploring this will allow you to correct misperceptions and misunderstandings about the medical facts and to give information according to the child’s desire for information.
- Explain medical information according to the child’s needs and age. Children often have many questions about what is happening and what is going to happen to them.
- Empathize with the child’s emotional reactions. Allowing a child to be upset and express feelings while providing physical comfort may be painful for the caregivers.
- Encourage the child by reassuring him or her that you will be there to listen and to be supportive.
Signs that younger children may want to discuss end-of-life issues include expressing the fear that something will happen to the parent or those working closely with them, separation anxiety, and generalized anxiety. Older children may indicate their concerns with behavioral manifestations such as school phobias, regression into a fetal position, or expressing fears about the potential for treatment failures.Preadolescents often express their suffering through imagery in drawings. Adolescents may manifest the need to discuss end-of-life issues by expressions of rage, concerns about sexuality and appearance, and a heightened awareness of time.
Children and the Concept of Death
As children near 8-9 years they begin to form an understanding of death and are aware of what’s happening to them. They sense the truth from listening and watching the adults around them, as well as from experiencing the changes inside their bodies. They often feel isolated, lonely and afraid.
Although not every terminally ill child will wish to talk specifically about death or the dying process, when a child realizes that his or her future is limited, he or she will adapt by shifting his or her focus to a more immediate future, such as the next holiday or a significant event. As death approaches, the child may become withdrawn and less spontaneous. Comfort is often found in the company of friends and family with little physical contact and little said.
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