What Do Children Understand About the Concept of Death?
Discussing Terminal Illness with Children

In seriously ill adults and also in children, uncertainties about the future often provoke a profound sense of loss of control. Studies show that children wish to be informed about their illness and plans for treatment.[1] Although children’s information needs may be age-dependent, most will worry about the impact of the disease and medical treatments on their daily lives and on others around them. Studies also show that when information, even if unfavorable, is withheld from children, the silence exacerbates the child’s fears and fantasies.[2] While not all terminally ill children want to talk specifically about death or the dying process, when they realize that their future is limited, they adapt by shifting their focus to a more immediate future such as the next holiday or a significant event.[3] Some children also have a surprising awareness of the fact that they are going to die. Children have asked questions such as “Is it going to hurt?” or “Will I be able to breathe?” or “Will an angel come and take me away?” Sometimes children will act out their concerns with disruptive behaviors. When communication barriers are addressed, these disruptive behaviors often disappear.

According to classical developmental theory, children do not fully comprehend the irreversibility of death until the approximate ages of 11 years to 16 years.[4] However, even much younger children understand the principle of cause and effect; most children with fatal illnesses—even those as young as age 3 years or 4 years—pick up cues from the physiological changes in their bodies as well as the reactions of parents and hospital staff and thus have an advanced understanding of disease and the concept of death.[5] Dying children are also aware of the short time they have left, especially adolescents who are acutely focused on the future. Thus, approaching a child with a preconceived notion of what a typical child of that age can understand about death is not always helpful in a clinical setting.[6]

Strategies for discussing end-of-life issues suggest that it is useful to formulate specific skills to be embodied in discussions that often begin long before a child is terminally ill.[5] The following strategy, which can be remembered as six E’s, may be used as a guide for health care providers who communicate with dying children and their family members:[7]

• Establish an agreement concerning open communication with parents, children, and caregivers early on in your relationship with them. Begin by exploring the attitudes of the child’s caregivers about sharing medical information with the child and answering any concerns they might have.



• Engage the child at an opportune time. A newly diagnosed serious illness or the occasion when a child takes a turn for the worse are medical events that should trigger discussion.



• Explore what the child already knows and wants to know about the illness. This will allow you to correct misperceptions and misunderstandings about the medical facts and to give information according to the child’s desire for information.



• Explain medical information according to the child’s needs and age.



• Empathize with the child’s emotional reactions.



• Encourage the child by reassuring him or her that you will be there to listen and be supportive.

References

1. Wolfe J, Friebert S, Hilden J: Caring for children with advanced cancer integrating palliative care. Pediatr Clin North Am 49 (5): 1043-62, 2002.  [PUBMED Abstract]
   
   
2. Ellis R, Leventhal B: Information needs and decision-making preferences of children with cancer. Psychooncology 2 (4): 277-84, 1993. 
   
   
3. Bluebond-Langner M: Meanings of death to children. In: Feifel H, ed.: New Meanings of Death. New York, NY: McGraw-Hill, Inc., 1977, pp 47-66. 
   
   
4. Piaget J: The Child's Conception of the World. London, England: K. Paul, Trench, Trubner & Co. Ltd., 1929. 
   
   
5. Sahler OJ, Frager G, Levetown M, et al.: Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities. Pediatrics 105 (3 Pt 1): 575-84, 2000.  [PUBMED Abstract]
   
   
6. Schonfeld DJ: Talking with children about death. J Pediatr Health Care 7 (6): 269-74, 1993 Nov-Dec.  [PUBMED Abstract]
   
   
7. Beale EA, Baile WF, Aaron J: Silence is not golden: communicating with children dying from cancer. J Clin Oncol 23 (15): 3629-31, 2005.  [PUBMED Abstract]