The dying child faces the ultimate leave-taking, the departure from all that is familiar and loved. There are two phases in the dying process. In a broad sense, the child is in the terminal phase when the illness no longer responds to conventional treatment. The emphasis of therapy shifts from a curative approach to palliative care. Yet the child may continue to live quite productively for weeks or months, either on experimental treatment or on no treatment at all. In a more delimited sense, terminal refers to the endpoint, when, regardless of the status of treatment, death is imminent. However the term is used, physical and psychological comfort are of utmost importance during the terminal phase. Even when treatment continues with the goal of prolonging life for a brief period, its major emphasis is on symptom control and support. 1
In the last year of her life, Karen's parents kept a list of available research drugs. Karen would occasionally comment with relief: "I still have [for example] three to go."