The Dying Child: Special Considerations in Working With Terminally Ill Pediatric Patients and Their Families.

Christina H. Vlahos, PhD

Assistant Professor of Psychology in Clinical Psychiatry
Weill Cornell Medicine-Qatar

Clinical Psychologist, Department of Psychiatry 
Sidra Medicine

Studying the concept of death in children presents several ethical and methodological challenges. The discussion on children’s understanding of death dates back to the end of World War II, at which time a relationship was found between age and a child’s comprehension of death. Piaget’s theory of cognitive development also contributed to our understanding of how children perceive death. Children’s perceptions of death are heavily influenced by the fact that death is a social taboo in most cultures. Key components of the concept of death include death’s universality, irreversibility, non-functionality, causality, and in some cultures, non-corporeal continuation. All four concepts are grasped by children at some time between the ages of 4-12, and in most children by age 7-8. 
When talking to children about death, it is important to be honest, concrete, and matter-of-fact. Adults are advised to take it slowly and invite the child to ask questions. It is important to reassure children about their ability to cope and that they will continue to be cared for. It is OK for adults to be emotional, and to admit that they do not have all the answers. Adults should be straightforward, and avoid euphemisms. They should address each of the aforementioned four concepts of death. There is a plethora of resources that can be used, including children’s books, TV series and movies, etc. 

Talking to children about their own death can be even more challenging. Research suggests that parents who talked to their children about their own death did not regret doing so, while the opposite was true. Protecting the child from this knowledge deprives them of the opportunity to say goodbye. Shying away from the topic can create anxiety in the child. It is important to give the child hope, without trying to “fix it.” End-of-life planning, or advance care planning, is advised. 

Parents need to be educated in a timely and appropriate manner about their child’s prognosis, and have a need to be involved in planning and decision making, although there can be cultural differences. It is useful to have the same team of people work with the parents from diagnosis to death, to maintain continuity and closure, and a point person of contact. Parents should be allowed to say goodbye to their child in private. They need emotional support at the time of death and in the subsequent weeks and months. Studies suggest that what healthcare providers do around the time of a child’s death and after has a lasting impact on families. 

Siblings should not be overlooked, or destined to substitute for the lost child. They experience their own challenges such as having to navigate telling their friends. They may feel afraid to play or be happy because they don’t want others to think they didn’t care about their lost sibling. Finally, they oftentimes have a need for reassurance that they, themselves, are not imminently in any danger of getting sick and dying.

 
References
1. Corr, C. A., & Corr, D. M. (Eds.). (1996). Handbook of Childhood Death and Bereavement. New York: Springer Publishing Company.

2. Elisabeth Kubler-Ross (1983). On children and death: How children and their parents can and do cope with death. NY: Scribner.

3. Nagy, M. (1948). The child’s theories concerning death. The Journal of Genetic Psychology, 73, 3-27.

4. National Public Radio, 3/4/20. The Dog Isn’t Sleeping: How to Talk with Children about Death. https://www.npr.org/2019/03/04/698309351/the-dog-isnt-sleeping-how-to-talk-with-children-about-death

5. Worden & Silverman (1996). Parental death and the adjustment of school-age children. Journal of Death and Dying,33(2), 91-102.

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