Diseases & Conditions : Care of the Terminally Ill Child
A Child's Concept of Death
Every child, at any age, has his or her own unique concept of death. Past experiences with death for the terminally ill child, as well as, his or her age, emotional development, and surroundings are what most influence a child's own concept of death. Cartoons, movies, television, video games, and even books are filled with images of death. The child with a terminal condition has, most likely, previously experienced death by loss of a family member, friend, or pet.
An adult's misconceptions and fear about death are often transferred to his or her children. Treating death as a part of life is difficult, but may help alleviate some of the fear and confusion associated with it. Dealing with death must be done within the cultural beliefs and mores of the family.
Developmental age is a broad term used to describe the maturity of thought process development. Children may be more or less mature in their thinking and processing information, than others, at a similar age. The following are children's concepts of death, according to common developmental ages:
Infant. For an infant, death has no real concept. Infants do, however, react to separation from parent(s), painful procedures, and any alteration in their routine. An infant that is terminally ill will require as much care, physically and emotionally, to maintain a comfortable environment as any age group. Maintaining a consistent routine is important for the infant and his or her caregivers. Because infants cannot verbally communicate their needs, fear is often expressed by crying.
Toddler. For the toddler, death has very little meaning. He or she may receive the most anxiety from the emotions of those around him or her. When a toddler's parents and loved ones are sad, depressed, scared, or angry, he or she senses these emotions and become upset or afraid. The terms "death" or "forever" or "permanent" may not have real value to children of this age group. Even with previous experiences with death, the child may not understand the relationship between life and death. Death is not a permanent condition.
Preschool. Preschool-aged children may begin to understand that death is something feared by adults. This age group may view death as temporary or reversible, as in cartoons. Death is often explained to this age group as "went to heaven." Most children in this age group do not understand that death is permanent, that everyone and every living thing will eventually die, and that dead things do not eat, sleep, or breathe. Death should not be explained as "sleep" to prevent the possible development of a sleep disorder.
Their experience with death is influenced by those around them. They may ask questions about "why?" and "how?" death occurs. The preschool child may feel that his or her thoughts or actions have caused the death and/or sadness of those around. The preschool child may have feelings of guilt and shame.
When children in this age group become seriously ill, they may believe it is punishment for something they did or thought about. They do not understand how their parents could not have protected them from this illness.
This idea may make preschool-age siblings of a dying child feel as if they are the cause of the illness and death. Young siblings of dying children need reassurance and comforting during this time period, as well.
School-age. School-aged children are developing a more realistic understanding of death. Although death may be personified as an angel, skeleton, or ghost, this age group is beginning to understand death as permanent, universal, and inevitable. They may be very curious about the physical process of death and what happens after a person dies. They may fear their own death because of uncertainty of what happens to them after they die. Fear of the unknown, loss of control, and separation from family and friends can be the school-aged child's main sources of anxiety and fear related to death.
Adolescent. As with people of all ages, past experiences and emotional development greatly influence an adolescent's concept of death. Most adolescents understand the concept that death is permanent, universal, and inevitable. They may or may not have had past experiences with death of a family member, friend, or pet.
Adolescents, similar to adults, may want to have their religious or cultural rituals observed.
Most adolescents are beginning to establish their identity, independence, and relationship to peer groups. A predominant theme in adolescence is feelings of immortality or being exempt from death. Their realization of their own death threatens all of these objectives. Denial and defiant attitudes may suddenly change the personality of a teenager facing death. Adolescents may feel as if they no longer belong or fit in with their peers. In addition, they may feel as if they are unable to communicate with their parents.
Another important concept among adolescents is self-image. A terminal illness and/or the effects of treatment may cause many physical changes that they must endure. Adolescents may feel alone in their struggle, and scared, and angry.
It is important for parents to realize that children of all ages respond to death in unique ways. Children need support and, in particular, someone who will listen to their thoughts, and provide reassurance to alleviate their fears.