Despite significant improvements in long-term, disease-free survival in children treated for cancer, cancer remains the second leading disease-related cause of death for children in the United States behind injury, congenital causes, and heart disease. 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.
The clinical utility of the test refers to the likelihood that the test will, by prompting an intervention, result in an improved health outcome. The clinical utility of a genetic test is based on the health benefits related to the interventions offered to people with positive test results. Theoretically, there are at least five strategies that might improve the health outcome of people with a genetic susceptibility to cancer:
Correction of the underlying genetic defect (not currently available)...
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.
Parent and physician perspectives on quality of care at the end of life do not always match. Parents of children who died from cancer reported focusing primarily on relationship issues, with higher ratings for physician care when oncologists:
Provided clear information.
Communicated with care and sensitivity.
Communicated directly with the child when appropriate.
Prepared parents for the circumstances around the child's impending death.
Oncologists based care ratings on biomedical measures such as lower ratings of pain by parents and fewer days of hospitalization.
Support for End-of-life Care
Resources to support palliative care and end-of-life care for children treated for cancer are often quite limited. A survey of member institutions of the Children's Oncology Group (81% response rate) found that only 58% had a pediatric palliative care team available to families, although the following related services were available: