Approximately 25% of children with cancer die of their disease. Early
in the course of a patient's illness, it is often impossible to determine
whether the disease will be cured with cancer-directed treatment. When potentially
curative therapy is no longer an option, the patient, family, and oncology
team face enormous medical, psychological, and spiritual challenges. Optimal
palliative care requires willingness on the part of the physician and caregiver
team to engage the patient and family in discussions of their hopes and fears
and to provide solace and support for emotional and physical pain. Using the
comments of a child in the terminal phase of acute leukemia, his mother, and
his physician, we describe opportunities and important lessons often revealed
only when families and their caregivers face the end of a child's life.
A broad-minded assessment of the patient's and family's physical,
emotional, and spiritual needs and clarification of realistic goals and hopes
not only improves the clinical care that the patient receives but also contributes
to the sense of satisfaction and meaning that the physician can gain from
the experience of caring for children at the end of life.