Children facing end-of-life have specific needs and concerns to consider. It's important to approach them in a spirit of honesty. However, honesty doesn't mean overwhelming them with information and details that can be frightening. Honesty means honesty of feeling. Information needs to be screened and made appropriate for their needs.
You can determine the appropriate amount of information to share by listening to their communication, both verbal and nonverbal. Children often don't know how to express their feelings with words. An example of this might be if a child seems confused, lonely or isolated. Then it might be a time to provide reassurance and individually tailored age-appropriate information.
As children grow, they have an evolving awareness of death tempered with individual variations. Children younger than 3 years old don't understand death as a fact, although they're sensitive to intense anxiety at separation from their caretaker. From age 3 to age 5 they understand the concept but don't understand that death is final. They see death as accidental and reversible and something that won't happen to them.
From age 6 onwards, there's a gradual awareness, to varying degrees, of the finality, inevitability and universality of death. This includes a dawning personal awareness of the possibility of their own death but only as something in the very distant future.
By about age 10, most children realize that death is universal and permanent. Children often don't ask direct questions about death. Don't assume that an apparent lack of concern means that they don't have questions and anxieties about death. Sometimes children wait for adults to anticipate and deal with their concerns. Young children may also wish that someone will "go away," and if that person should die, they can feel that their wish caused the death. You should be sensitive to this possibility also.
Always gear your approach to any individual child to his or her personality, needs and developmental level. Some children need to be asked regularly if they have questions or concerns they'd like to discuss. For some children, you may need to offer only facts and information appropriate to their apparent needs. Use the child's language, and always let him or her know that all feelings are acceptable — even tears, sadness and anger. Some children need to know that silence is also acceptable. These children might prefer to express their feelings with play or toys.
The most important feature of your communication with a child about end-of-life is to tailor and temper the information and approach him or her as an individual. Remember that the feelings and attitudes conveyed in your approach are even more crucial than the content of your words.
Preparing a Child for Death
Preparing a child for death is possibly one of the most difficult tasks a parent and family will ever face. Conveying to the child that he or she won't be alone as they near the end and that parental support and love will continue even afterward can be most helpful to a dying child. A child also needs to know that death will not hurt, because if there's any pain the doctors will treat it and that after death, there will be no more pain.
Children, just like adults, need to know their life has purpose and meaning. Letting them know the effect their short life had on others is important to them. And finally, children may also need to say good-bye. Watch their communication. They may want to decide who can have their toys, dolls, trucks and books.
Most parents report that making funeral plans and other arrangements ahead of time can be helpful and greatly reduce the stress they feel at the time of their child's death.
Resources and Referrals
For more information about children and hospice, contact the Children's Hospice International at (800) 242-4453.
The Leukemia & Lymphoma Society's Information Specialists are always here to help you with information and referrals as you meet the challenges of end-of-life. Call our toll-free number at (800) 955-4572 to speak with an information specialist who will learn more about your request and be better able to respond to your concerns.
- End-of-Life Care (Children and Young Adults)