Children of all ages need honest and accurate information about their illness, treatment options, and outlook (prognosis). Children share 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's important to understand that all children and families are different. Different cultures have varying beliefs about what a child should know, so there is no one right way to discuss death. In general, an open communication style lets the dying child express their fears and desires. This doesn't happen overnight. It takes time for the child and family to be able to discuss death honestly.
The goal in discussing death with a dying child is to improve their comfort and ease any fears. If the child isn't ready to discuss death, the most helpful step is to wait until they are ready. Let the child know you are ready to talk to them whenever they are 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:
Babies don't have language skills. But they do react to physical comfort. When a baby is dying, a comforting touch and holding are as important for the baby as the caregiver. Communicating love can be expressed through a gentle touch and cuddling.
For toddlers and young children, use concrete language. Don't use misleading terms for death, such as "sleep" and "passed away." A young child may be afraid to go to sleep if it is linked with death.
Young children may ask very direct questions about death, if given the chance. It's important to be honest and consistent with your response. If they ask a question that you don't know the answer to, it's OK to say so rather than make up an answer. Children at a very young age can sense falseness in an answer. They may also get inconsistent information if answers from different people are misleading or avoid the truth.
Teens may want to talk about death with a friend or someone other than a parent. Encourage communication in any manner that will help the child express their fears and concerns.
It's important to check 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 don't know how to express, including:
Feelings of guilt and shame. Children may think their thoughts have caused the illness or death that has made everyone so sad. It's important to discuss with the child that healthcare providers and nurses can't always prevent death. Reassure the child that bad thoughts can't cause death. Also reassure them that they did nothing wrong to cause the death or illness.
Fear that pain is linked with death. It's important to address these fears by explaining the use of medicines 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 they 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 lets the older child 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, let the child set the tone for communication. Whatever they are most comfortable with will allow for the most effective communication.