Diseases & Conditions : Care of the Terminally Ill Child
Discussing Death with Children
Most children of all ages need honest and accurate information regarding their illness, treatment plan, treatment options, and prognosis. Children communicate their fears and concerns in many ways: crying, acting out, through playing and drawing, asking repeated simple questions, ignoring others, seeking information from others, and writing letters. Let your child or teen know that these feelings of sadness, confusion, anger, and fear are all acceptable.
It is important to understand that all children and families are different. Given that different cultures have varying beliefs about what a child should know, there is no one single right way to discuss death. In general, an open communication style atmosphere allows the dying child to express his or her fears and desires. This openness does not happen overnight. It takes time for the child and family to be able to discuss death honestly.
The ultimate goal in discussing death with a dying child is to optimize his or her comfort and alleviate any fears. If the child is not ready to discuss death, the most helpful step parents and caregivers can take is to wait until he or she is ready. Let the child know you are ready to talk to him or her whenever he or she is ready to do so. Forcing information will usually result in anger, distrust, and emotional distance from others. Waiting until a child is ready to handle the situation will allow for better communication.
When discussing death, always use language that the child will understand. Consider the following:
Infants do not have language skills; however, they do react to physical comfort. When an infant is dying, a comforting touch and holding are as important for the infant as the caregiver. Communicating love can be expressed through a gentle touch and cuddling.
For toddlers and young children, use concrete language. Avoid misleading terms for death, such as "sleep" and "passed away." A young child may be afraid to go to sleep if it is associated with death.
Young children may ask very direct questions about death, if given the opportunity. It is important to be honest and consistent with your response. If they ask a question that you do not know the answer to, it is acceptable for you to say so, rather than make up an answer. Children at a very young age can detect falseness in an answer. They may also receive inconsistent information if answers from different people are misleading or avoid the truth.
Teenagers may want to discuss death with a friend or someone other than a parent. Encourage communication in any manner that will help the child express his or her fears and concerns.
It is important to assess the child's and family's beliefs and understanding of death and life after death when communicating with them. Children may have unexpressed fears or concerns that they are not comfortable talking about, or that they do not know how to express, including the following:
Feelings of guilt and shame. Children may believe their thoughts have caused the illness or death that has made everyone so sad. It is important to discuss with the child that doctors and nurses cannot always prevent death, and to reassure the child that bad thoughts cannot cause death, and that he or she did nothing wrong to cause the death or illness.
Fear that pain is associated with death. It is important to address these fears by explaining the use of medications to control pain. Remind your child that death itself is painless.
Fear of separation. This may be addressed by using specific religious or cultural beliefs related to the body, soul, or spirit. Reassure the child that he or she will not be alone at the time of death.
Written communication. Some children may communicate through play or drawing. Pay attention to their drawings and discuss them with the child. Others may write letters to their parents or loved ones to say good-bye or to indirectly ask questions. Writing allows the older child to ask direct questions without visibly upsetting the parents. Some adults and children communicate best through writing small notes back and forth to one another.
Spiritual and cultural beliefs. These beliefs greatly influence the death experience. Parents, members of the family's religious community, chaplains, and clergy can play an important role in discussing and explaining death to a child. Consistency is important in communicating the family's beliefs about death and/or life after death. Also, sharing these beliefs with other caregivers can limit confusion for the child.
For all age groups, allow the child to set the tone for communication. Whatever he or she is most comfortable with will allow for the most effective communication.