End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care

doi:10.1182/blood-2009-10-250225

End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care

¹ Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, United States;
² Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, MA, United States;
³ Department of Pediatrics, Peyton Manning Children's Hospital at St. Vincent, Indianapolis, IN, United States;
⁴ Department of Pediatric Hematology-Oncology, Children's Hospitals and Clinics of Minnesota, St. Paul and Minneapolis, MN, United States;
⁵ Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, United States;
⁶ Department of Medicine, Children's Hospital Boston, Boston, MA, United States

* Corresponding author; email: christina_ullrich{at}dfci.harvard.edu

Abstract

The end-of-life (EOL) experience of children who undergo stem cell transplant (SCT) may differ from that of other children with cancer. To evaluate perspectives and patterns of EOL care after SCT we surveyed 141 parents of children who died of cancer (response rate 64%) and their physicians. Chart review provided additional information. Children for whom SCT was the last cancer therapy (n=31) were compared with those for whom it was not (n=110). SCT parents and physicians recognized no realistic chance for cure (RCC) later than non-SCT peers (both p<0.001) and were more likely to have a primary goal of cure at death (parents p<0.001, physicians p=0.02). SCT children were more likely to suffer highly from their last cancer therapy and die in the ICU (both p<0.001), with less opportunity for EOL preparation. SCT parents who recognized no RCC > 7 days before death along with the physician, were more likely to prepare for EOL, and if their primary goal was to reduce suffering, to achieve this (p<0.001). SCT is associated with significant suffering and less opportunity to prepare for EOL. Children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals and opportunities to maximize quality of life.