A. Healthcare providers must attend to the immediate physical needs of these children. It is crucial to relieve pain and suffering and to assure the children that adults are always available. Children should be told by both the parents and the healthcare providers, “We want you to tell us whenever anything is bothering you. I will always be here (or be able to be reached) anytime you want me. We will all do our best to make sure that you feel as comfortable as possible.”

B. Children at different developmental stages have different conceptual understandings of the meaning of death. This will affect their ability to understand and adjust to their impending death (see Chapter 90). Children with a terminal illness usually do appreciate the seriousness of their illness and may develop a precocious understanding of death and their personal mortality.

C. Many parents and clinicians are uncomfortable when children openly acknowledge an awareness of their impending death. Children often feel that it is their task to provide emotional support to their parents and to carry on the mutual pretense that they are unaware of their health status. This conspiracy of silence isolates the child from available supports. Most children, in fact, fear the process of dying more than death itself.

D. To the extent possible, children should be informed about their health status. Children often turn to members of the healthcare team to ask questions, directly or indirectly, about their illness and impending death. Children who are dying may also directly ask family members and staff, “Am I going to die?” Adults should initially clarify the motivation for such questions: Is the child seeking reassurance that all efforts will be made to minimize pain, that parents and family members will remain available, or that every reasonable effort will be made to treat the underlying illness? Is the child merely attempting to determine the seriousness of his illness? Once the motivation for the question is identified, the adult family member or healthcare provider can provide the necessary reassurances or information. Prohibitions on informing children about their condition force parents and professionals to lie, thereby jeopardizing a caregiving relationship built on mutual trust and respect. The principles to consider in informing children about a terminal illness or impending death are summarized in Table 94-2.

E. Facilitating discussion about children’s concerns often involves projective techniques such as play or picture drawing. Many children choose not to discuss their impending death directly. It is rarely necessary (or appropriate) to confront children with the reality that they are dying after they have been appropriately informed. Instead, clinicians should remain available and offer indirect outlets for addressing the child’s concerns. Children will avail themselves of these opportunities when, and if, they are ready.

F. Clinicians are often anxious that they will not know what to say to a child who is dying. The goal of counseling children who are dying is not to take away their sadness or to find the “right” answers to all their questions. Rather, it is to listen to their concerns, to accept and empathize with their strong emotions, to offer support, and to assist them in finding their own coping techniques (e.g., “Some children find it helpful to talk to others about what is worrying them; other children prefer to draw pictures or keep a diary. Whatever you decide to do is fine. I’m always available to talk with you about your feelings, or just to sit and talk about something else.”). In many cases, the best approach is to talk about a topic of interest to the child or merely to sit quietly and hold the child’s hand.

G. Children must be allowed, even encouraged, to continue to have hope and to go on with their lives. These children should be regarded less as children who are dying and
more as individuals living with a serious and/or life-threatening condition. The goal must be to optimize the quality of their remaining life and not merely to prolong its duration. Important routines should be continued with as little disruption as possible, such as allowing them to attend school or to do schoolwork in the hospital. Although regressive behavior may be normative and appropriate at times of stress, excessively regressive behavior (e.g., a 6-year-old who begins biting staff) should be addressed supportively but firmly, often employing a behavioral management approach developed by the treatment team and the family.

H. Many children and adolescents feel guilty and ashamed about their illness. Children who rely on magical thinking and egocentrism to explain the cause of illness may assume that terminal illness and death are the result of some perceived wrongdoing (“immanent justice”). Children need to be reassured frequently that they are not responsible for their illness.