It is difficult to know how to respond to a child when he or she says, “I don’t want to die.”  Children often understand much more than we give them credit for.

Children often say things to or ask questions of the people they trust and know will be honest with them. This child feels comfortable broaching this subject with you and has opened the door for a conversation to occur. A response to this type of question might be: “It isn't fair that you are a little kid and have to die. Would it be okay if we talked about it?” This may lead to further discussion where open-ended questions are often helpful to determine the child’s specific issues.

Often, children have fears or worries about what will happen and what symptoms they might experience. This would especially be a concern if they have had severe symptoms as part of their disease process. Other children fear that if they die, no one will remember them. They worry that life will go on without them, and that they will not be thought of very often. Depending on the age of this child, he or she may also have some ideas about illness, death and dying that are not realistic and may have imagined things that have scared him or her. If the conversation allows, you may want to say, “People who are really sick often have things they are scared of or worry about. Is there anything that you are worrying about or are scared of?” This normalizes the common emotions of those who are dying and also provides an opportunity for the child to discuss his or her worries.

If you are feeling that this is a difficult conversation to have on your own, other health care providers may be able to help you and possibly be there with you when you have a discussion with this child. It would be important to get permission from the child before involving others in these delicate and personal discussions. If you are asking someone to be a support for you, we recommend that it be a health care provider known to the child, and someone the child trusts and feels comfortable with. It may also be helpful to consider involving palliative care.

If you are not feeling comfortable having this type of conversation, you could also offer to link this child with additional resources that can address the emotional aspect of dying that the child is experiencing. These resources may include a child life specialist, social worker, psychologist or art therapist.

Some children may find that they want to express their emotions and hopes through art. They may find Marge Eaton Heegard ’s workbook, Beyond the Rainbow: A Workbook for Children in the Advances Stages of a Very Serious Illness, very helpful.

It will also be important to ensure this child and his or her family has access to resources that may be required to support the family emotionally and physically with care giving.

See also: Talking with Children and Youth about Serious Illness

For the child:
Beyond the Rainbow: A Workbook for Children in the Advanced Stages of a Very Serious Illness by Marge Eaton Heegard

For the parents:
Three-page, free, downloadable handouts from Child Bereavement UK :
A guide for parents of terminally ill children

When a sibling is not expected to live: supporting children