However, these are life-threatening illnesses. Most families, including the children, have questions about the possibility of death even while they are very focused on living. While they are optimistic about conquering the disease, concerns still arise about dying. For most, the concern recedes as treatment progresses to a successful conclusion. But despite the fact that medical advances have significantly increased survival rates, treatment efforts are not always successful. In this section we will discuss how parents and children can openly discuss questions and concerns about possible death.

One of the primary concerns in families living with a life-threatening illness is communicating about the possibility of death. Who gets told that a child has a life-threatening illness? When do you tell children about the possibility of death? How do you discuss the possibility of death with children? In our experience, we have found that honesty with brothers and sisters, as well as with the child with leukemia or lymphoma, is the best approach. This applies throughout the course of treatment and in the event it becomes necessary for a family to prepare for a child's death. Most treatment teams have members who are trained to help parents prepare for these discussions; ministers, priests or rabbis can also help.

We have emphasized repeatedly that in discussions with children, honesty is the best policy. But when it comes to the subject of death, there are some special considerations. In an age when we have virtually unrestricted access to information, we have come to believe that the more information you have, the better. But information is not synonymous with honesty. There is a danger in overloading children with information about death and dying. Knowledge can be empowering, but it can also be frightening and overwhelming.

Being honest with your children does not mean providing all the information you have available to you. It means being honest about your feelings. It means being honest with yourself about how much information you think your child can handle. And it means being able to screen information and present it in a way that is appropriate for your child.

When communicating with your child about difficult subjects, the best advice is to listen carefully to your child, acknowledge his worries and fears, and respond accordingly. Be alert for nonverbal cues or behaviors that may reflect feelings your child is unable to express directly. These indirect forms of communication can be quite revealing. If you sense that your child is feeling confused, isolated or lonely, you may need to provide more information or reassurance.

Any discussion about death must be tailored both to the developmental level of the child and to be in accord with a family's spiritual and/or religious beliefs. A child or adolescent's personal experience of death (with the loss of a family member or peer) is another consideration. Concepts of death are age-related in children, with wide individual variations. Attitudes and concepts do not change abruptly at a given age, but evolve gradually.

Infants, Toddlers and Preschoolers. During the first two years of life there is no understanding of death. Fear of separation from protecting, comforting persons is present in its most terrifying intensity. While death is not yet a fact for the child going on three, anxiety about separation remains all-pervasive.

Between the ages of 3 and 5, most children begin to comprehend death as something that happens to others. At this time, the concept of death is still vague. It is associated with sleep and the absence of light or movement. It is not yet thought of as permanent. In contrast to toddlers, most children of this age are able to withstand and understand short separations. They often respond more spontaneously and with less anxiety to questions about death than do older children. They are also curious about dead animals and flowers. It is at this age that children are especially involved with magic. Preschoolers feel that wishes can become real. The child may wish that mom, dad, brother or sister would go away and never return; therefore, there may be anguish and guilt when a parent or sibling dies.

Children between ages 3 and 5 deny death as a final reality. They believe death is accidental and they themselves will not die. They believe that it is reversible.

Early School Years. From approximately the age of 6 years and onward, the child gradually accommodates to the proposition that death is final, inevitable, universal and personal. Many 6- and 7-year-olds suspect that their parents will die someday and that they, too, may die, but only in the very distant future.

Children between ages 5 and 9 years show a strong tendency to interpret death as a person who will take them away from their family. Many children are horrified, confused and angered at their first discovery of death. In brief, the child under 10 is beginning to come to grips with the concept of death, but has not yet attained a well-developed understanding of death.

Children under 10 generally do not ask direct questions about death. They wait for adults to show readiness to anticipate and deal with their concerns. The absence of expression of anxiety about death does not mean there is lack of concern. While some 5-year-olds may talk freely about death, most children find it difficult to express their feelings openly, and thus are often thought to lack anxiety about the subject. Many of their feelings may be underground; thus, reports that a particular child has absolutely no fear may really only be a report of that child's lack of expression.

Pre-Adolescence and Adolescence. Piaget, a famous child psychologist and philosopher, suggests that as a child approaches adolescence, at about age 11 or 12, he is equipped with the intellectual tools necessary to understand both life and death in a logical manner. At about the age of 10, the fact of the universality and permanence of death finally becomes understandable.

The child of age 10 accepts death as a natural phenomenon and the fact that all people must die and that he himself must die. He thinks that his own death is still something that will probably not occur for a very long time. Death is something that happens to "old people." Older adolescents, of course, have an understanding more like adults that death can come to anyone at any age. Since they think their lives are just beginning, they find it difficult to believe that they might die anytime soon.

In summary, the child under 5 years old lacks almost all of the mental operations required to form the concept of death, even in a beginning manner, except for his understanding of the concept of separation. By the age of 11 or 12, the concept of death is fairly well-established. In the middle years, ages 6 to about 10, the child has some appreciation of the fact of death, but has not yet come to full adult awareness of the concept. Adolescents are more mature in their thinking.

Helping Children Understand Death. The following points are important for parents to consider discussing with their children, including both their child with leukemia or lymphoma as well as brothers and sisters. It is recommended that these discussions occur sometime during the early phase of treatment. Some children may benefit from parents regularly asking them if they have questions or concerns about what is happening or what could happen. For children who are less likely to ask questions directly, it may be necessary for parents to present important information and encourage discussion and their questions. Use language that fits with your child's age and raise points in a tactful manner. Family discussions that include all children in the family are often helpful and may encourage family members to help each other through stressful times. At other times, a child may benefit more from one-on-one discussion with a parent. Here are some helpful discussion points.

(1) Death, like birth, is a part of the natural order of things. It is normal for living things to die. Flowers, plants, trees, animals and people all die sometime. It happens sooner for some people and later for others. Talking about death does not make it happen. Talking about death does not mean that we think it is going to happen anytime soon. "Leukemia" or "lymphoma" is a very serious illness. People who get leukemia or lymphoma are given special medicines which almost always help them get better and live for a long time. Sometimes when the special medicines don't help a person get better, the disease can cause a person to die.

(2) Death has social significance. We have special feelings for special people we share our lives with (our families and friends), and they have special feelings for us too. People never forget special people in their lives, even when they die. When someone dies, the special feelings stay with each person.

(3) The loss is never complete: The person who dies lives on in some way. Here, the specific cosmological and/or religious beliefs of the family are critical; some feel that the child will live on in spirit, others that the child will have passed on a legacy of the meaning of life to friends, and others that the child will live on in both body and soul for eternity.

(4) Children need to be reassured that it is all right to cry and feel sad. A child with leukemia or lymphoma often feels sad when thinking about his or her illness. Brothers and sisters, and moms and dads feel sad and cry, too. It is all right to feel angry and resentful. Children need to be reassured that it is all right not to want to discuss their illness or possible death. Sometimes it is best for a child to tell others bluntly that he or she does not want to talk about it right now. Then, when the child is ready to talk about his or her illness or possible death, the adults in his or her life need to be ready to listen and provide support.

(5) Children also need to be reassured that silence is acceptable. It is not necessary to express all feelings in words. Sometimes it is easier for children to displace their feelings through play and use of toys to express their feelings. In other words, it may be easier for them to talk about what teddy bear is worried about.

(6) Adolescents may prefer to talk with an uncle or aunt or close family friend or member of the treatment team about their fears about dying. As noted before, this may be because they wish to spare their parents pain.