Diseases & Conditions : Care of the Terminally Ill Child
Psychosocial Needs of the Dying Child
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. The following psychosocial needs of the dying child should be considered:
Time to be a child. Engage in age-appropriate activities for children, such as age-appropriate play.
Communication/listening/expression of fears or anger. The child should have someone they can talk to about his or her fears, joys, anger, or to simply talk about the weather. 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 does not 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 teenager 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. Spiritual and cultural needs should be respected and provided for. Rituals allowing the child and his or her 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 is dependent on the culture and ethnic background of the family.
Wish fulfillment. Some organizations provide funding for a "wish" for seriously and/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." If the child is able to actively participate, all measures should be provided for him or her. 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 are not alone in the dying process. The dying child most often wants reassurance that he or she will not die alone and that he or she will be missed. Parents and loved ones need to comfort the child and tell him or her 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 he or she dies. The presence at death benefits both caregivers and the child.
Limit setting. Parents need to continue setting appropriate limits on a child's behavior and not let their guilt or grief influence their normal parenting. If not, the consequence can be children becoming or feeling out of control.