The child with a terminal illness has the same need for love, emotional support, and normal activities as any person facing death. Love, respect, and dignity are all important factors in caring for a dying child. Consider these psychosocial needs of the dying child:
Time to be a child. Take part in age-appropriate activities and play for children.
Communication/listening/expression of fears or anger. The child should have someone they can talk with about their fears, joys, or anger. Being alone at the time of death is a common fear for dying children. Listening to them is the most important way to help. Accepting that the child doesn't want to talk about dying is also important. The parents' needs may often be greater and they should seek out someone they can talk to. If "big" issues are not discussed, we should never underestimate the importance of a nonjudgmental and caring presence.
Depression and withdrawal. Independence and control need to be given to the dying teen whenever possible. Many physical changes that happen before death can make the child very dependent for even simple tasks. Loss of control and depression may cause withdrawal. It is important to validate these feelings without forcing communication.
Spiritual needs. Respect and provide for spiritual and cultural needs. Rituals allowing the child and their family to remember, giving thanks and expressing gratitude, and saying goodbye are all ways to honor the transition from getting well to letting go or dying. What and how much to tell a child depends on the family's culture and ethnic background.
Wish fulfillment. Some organizations provide funding for a "wish" for seriously or terminally ill children. If possible, help the child decide what they would most like to do before they die. A shopping spree, Disney World, a new computer, or meeting a famous star are examples of children's "wishes." These wishes often create wonderful memories for families of children with a terminal illness.
Permission from loved ones to die. Some children seem to need "permission" to die. Many children fear their death will hurt their parents and leaving them behind will make them very sad. It has been observed that children will cling to life through pain and suffering until they get "permission" from their parents to die. This has been described in the dying adult, as well. Sometimes parents are not always the best people to give this permission. Someone close to both the parents and the child may be more appropriate.
Comfort in knowing they aren't alone in the dying process. The dying child most often wants reassurance that they won't die alone and that they will be missed. Parents and loved ones need to comfort the child and tell them that, when death happens, they will be right at the bedside. This is often a difficult promise to keep. But every effort should be made to be holding or touching the child when they die. The presence at death benefits both caregivers and the child.
Setting limits. Parents need to keep setting appropriate limits on a child's behavior. It's important that parents don't let their guilt or grief influence their normal parenting. If not, the consequence can be a child becoming or feeling out of control.