Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

Abstract

Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes towards PC is crucial to improving PC utilization. This study aimed to explore bereaved parent attitudes towards PC in pediatric oncology. This study used data from Alex's Lemonade Stand: My Childhood Cancer Bereavement Survey. The survey included questions regarding bereaved parents' attitudes towards PC. The survey included 72 bereaved families. Parents completed the survey a median of 11 years after their child's death. PC was involved in 71% of cases. These families were more likely to have do not resuscitate (DNR) orders, an advanced care plan, hospice care, a planned death location, and for their child to die outside the hospital. Although most parents (86%) agreed that it is a doctor's obligation to inform all patients with cancer about PC. PC referrals appeared to happen later than parents preferred. Lack of PC involvement was primarily due to PC not being offered or sudden death of the child. Parental hesitancy should not be viewed as a barrier to PC involvement. Although parents held mixed attitudes about PC, families accepted PC, desired earlier referrals, and believed it was a doctor's obligation to offer PC. These findings highlight the need for timely PC referrals, improved education, and increased awareness of PC services to enhance the integration of PC in pediatric oncology.