Papa Day: Penelope Alice Boyer, 1995

Ill children and adolescents vary according to age in their understanding of what is happening to their bodies. When they are facing death, these young patients confront unique physical, psychological, and spiritual concerns.

Developmental Issues
Infants and toddlers. Infants and very young toddlers do not understand much of what adults say. Hence, parents or other caregivers cannot adequately explain to these youngest of patients why they must be subjected to yet another examination or diagnostic procedure. Healthy children at this age are usually afraid of strangers, and of being separated from their parents or other caregivers. When very ill infants or toddlers are separated from parents by strangers, they become almost frantic. If this separation involves physical pain in addition to the emotional pain of separation, they are inconsolable, and their parents are likely to feel completely helpless.

Preschool children. "If I die, it will be OK 'cause when I wake up I'll still be here," said four-year-old Andrew.

Preschoolers are constantly expanding their repertoire of words. They also fear separation from loved ones and the experience of pain when they are ill. Young children may wonder if their illness is a punishment for wrong behavior. This association is made because they have heard their parents say things like, "If you don't button your coat, you'll get sick!" Preschoolers trust adults; if adults say such things, they must be correct. Thus, they experience sadness and guilt for their illness, frequently asking many questions about their condition. If their parents have spoken about God's punishment of wrongdoers, children may wonder what they did to make God so angry. They may, in return, become angry at or fearful of God.

Preschoolers do not understand that death is irreversible. Because they have seen cartoon characters run over by a truck and jump back up, they do not understand that people or animals do not do the same when they die. Hence, dying preschoolers are not concerned that they will be away forever; they are concerned about their present separation from parents and their pain.

Elementary school-age children. Eight-year-old Cyndi was dying, and she knew it. Initially angry, she had become profoundly saddened. "It's so unfair that I'll never grow up to be a lady and a teacher. I would have been a good one, too."

School-aged children are concrete and learning to be logical, for example, if a child does A, B will result. This is reinforced by formal education which, at this age, emphasizes concrete abilities, such as counting, spelling, adding, and subtracting. These children are learning what it means to be a friend to others. They value fairness in their friends—"If you play with me, I'll play with you,"—and in every aspect of life.

When school-aged children are seriously ill, they have many questions that are not easily answered: "Why me? Am I being punished? What did I do wrong?" Unlike younger children, they do understand that death is final. They frequently realize that they are dying before anyone has told them and may attempt to protect their parents from the news: "Don't tell my mom, but I don't think I'm ever going home." They are struck by the unfairness of the fact that they will never grow up like their siblings or friends.

Like younger children, school-aged children are saddened by separation from friends and school and by the physical and emotional pain they must endure. They understand only too well what they used to be able to do and what they can no longer do. They may express anger at their parents, the doctors, and God. They may bargain with God: "If you let me get better, I'll never forget to say my prayers again." This fits well with their desire for fairness. After all, if they have been good, why should they be ill? Continued or worsening illness may shake their faith in a good and loving God.

Preteens and early teens. "I don't want any stupid visitors," twelve-year-old Frank screamed. "I don't want them to see how gross I look. What don't I just die, and get it over with?"

Preteens and young adolescents can be completely devastated by their serious illnesses. They understand completely how well they used to be, how ill they are now, and their present limitations compared to their peers. Healthy children of this age are planning for their future: what courses they will take in school, what they will be when they reach adulthood, what kind of person they would like to marry. Terminally ill preteens and young teens know that these dreams may never be reached, and they have a sense of being cheated. Although many are weepy, others are angry and act out their frustrations. These young people are especially hurt if friends or schoolmates do not call, send cards, or visit. Although they may say that they do not want visitors because of their appearance, they grieve the loss of an active social network, especially the rhythm and work of the normal school day.

Appearances are very important. Hair loss, weight loss, skin lesions or discolorations can be depressing. "Not only do I have to die young," said an angry thirteen-year-old, "but I also have to get ugly. No one even wants to look at me now. I'm a freak."

Anger at parents or God can be intense. "Why didn't you protect me so that I wouldn't get sick?" screamed a ten-year-old. "Kids aren't supposed to die before adults." "I don't think God loves me, because if He did, He would hear my prayers and let me live. So, who needs God?" This anger can be mixed with fear, because these children believe that they will be meeting this God in a very short time. "When I die, where will I go?" worried a twelve-year-old. "Suppose God is mad at me. Will I go to hell?" Death is clearly understood as irreversible.

Mid and older adolescents. Several days before her death, Janese said to her doctor, "I know I'm dying, but don't let people ignore me and park me in the corner. It's bad enough that I have to die when I don't want to, but I don't want to die alone. Promise me I won't die alone."

Older teens face the same issues that younger teens do—maybe even more so. At a time when most teens their age are thinking about proms, graduation, college, and their lives as adults, these teens are wondering how long they will live in their present condition. Will they lose their ability to speak? Walk? Toilet themselves? Think? What kind of a future and how much of one do they have? Like younger teens, they are upset by their appearance and their lack of social contacts. They may be weepy or angry at the unfairness of it all. Their anger may be directed at God, who fails to cure them; at their parents, who failed to protect them from becoming ill; at their friends, who fail to visit or support them; or at health professionals, who fail to "get it right."

Approaches to Ill or Dying Children and Adolescents
We can best serve seriously ill children and adolescents—and their families—by acts of gentleness and kindness. Words spoken softly often comfort a young child—even in the absence of parents or other familiar persons. The emotional trauma of separation can be minimized by permitting parents to be present as much as possible; pain can be reduced by limiting painful procedures and by providing adequate pain relief when such procedures must be done.

Adults should answer young patients' questions as honestly, but as sensitively, as possible. Most ill children and adolescents greatly appreciate an adult's empathy with their situation, even if the adult can't make it better. Sometimes, all that is needed is the simple presence of a "safe" adult who gives them permission to voice their anger, fears, and disappointments without reproach or being talked out of such feelings. Such active listening and simple presence bring strength and comfort not only to children and adolescents, but also to parents, who may be questioning their parental abilities. When parents and their children differ on the future course of therapy, the presence of a caring third party may facilitate a resolution more promptly than a roomful of experts.

Any questions of God that arise may be difficult and painful. For if God is love and if God can do anything, why doesn't God cure the seven-year-old with a brain tumor, or eradicate the virus causing AIDS, or alleviate the traumas experienced by little children? Intellectual answers will not suffice, for these are heart and spirit questions. Empathy and simple presence—letting those suffering meet God through the concern and care of human beings—is, in the end, the best way to respond.