Despite significant improvements in long-term, disease-free survival in children treated for cancer, cancer is the leading disease-related cause of death for children in the United States. For more than half of children for whom frontline treatment fails, treatment using relapse and disease recurrence clinical trials (phase I and phase II) and unrelated hematopoietic stem cell transplantation is common. For children, this strategy is sometimes effective in providing prolonged remissions with patient-valued quality of life. For these reasons, many children treated for cancer in the United States and around the world die in inpatient settings while receiving active cancer treatment. Clinical practice and experience is the driving force in this field; unfortunately, very few empirical studies have been published to guide practice.
Planning for a child's death is often a very uncomfortable topic for parents, other family members, and members of the health care team. Children are not supposed to die. Although there has been a significant emphasis on better understanding the decision-making process and the care provided for children at the end of life, many parents choose to continue active cancer treatment until death.
One hundred forty-one parents who had lost a child to cancer were asked whether their children benefited or suffered from treatment with no realistic expectation of success. Thirty-eight percent of the parents indicated that their children continued to receive cancer-directed therapy, even after the parents recognized that there was no realistic chance of success. Sixty-one percent of these reported that their child experienced some suffering, and 57% reported little or no benefit from the continued treatment. Despite these experiences, 57% reported that they would recommend standard chemotherapy during the end-of-life phase, and 33% would recommend experimental (phase I and phase II) treatment. Parents who felt that their child suffered at the end of life were less likely to recommend additional chemotherapy. However, even those who did not personally support using standard chemotherapy at the end of life (91%) felt that physicians should offer this as an option.