End-of-life decisions in pediatric cancer patients

Background: End-of-life decisions (ELDs) have been investigated in several care settings, but rarely in pediatric oncology. Objective: The aims of this study were to characterize the practice of end-of-life decision making in a Dutch academic medical center and to explore pediatric oncologists' perspectives on decision making. Methods: Between 2001 and 2010, in a specified period of 2 years, 57 children died of cancer. The attending pediatric oncologists of 48 deceased children were eligible for this study. They were requested to complete a retrospective questionnaire on characteristics of ELDs that may have preceded a child's death. ELDs were defined as decisions concerning administering or forgoing treatment that may unintentionally or intentionally hasten death. Results: In 31 of 48 cases (65%) one or more ELDs were made. In 20 of 31 cases potentially life-prolonging treatments were discontinued or withheld, and in 22 of 31 cases drugs were administered to alleviate pain or other symptoms in potentially life-shortening dosages. Frequently mentioned considerations for making ELDs were no prospects of improvement (n=21;68%) and unbearable suffering without a curative perspective (n=13;42%). ELDs were discussed with parents in all cases, and with the child in 9 of 31 cases. After the child's death, the pediatric oncologist met the parents in all ELD cases and in 11 of 17 non-ELD cases. Pediatric oncologists were satisfied with care around the child's death in 90% of the ELD cases versus 59% of the non-ELD cases. Conclusions: In two-thirds of cases, ELDs preceded the death of a child with cancer. This is the first study providing insights into the characteristics of ELDs from a pediatric oncologist's point of view.