Children with Cancer as Participants in End-of-Life Research

Abstract

Children with cancer participate in research towards the end of life (EOL), including early phase anticancer treatment trials and palliative care studies exploring topics like decision making and communication. These studies advance pediatric oncology, improving cancer therapy and supportive care. However, ethical concerns have been raised regarding family understanding of the purpose and benefits of studies, and participant burdens.I sought to address knowledge gaps about EOL research by conducting three studies. First, I performed a retrospective cohort study, using CYP-C data* to describe the population of Canadian children who participated in early phase cancer therapy studies towards the EOL. 4.5% of children who died during this period participated in trials. Participation was associated with a brain tumor diagnosis, treatment in a major early phase study center, previous trial participation, and higher socioeconomic status. Second, I performed a systematic review including 24 studies that explored stakeholder perspectives about children’s participation in EOL research. However, results were limited, as studies including health professionals (HPs) mostly focused on physicians, and used survey methodology, limiting the depth of their findings. There was a paucity of literature about palliative care research. In the third study, I used interpretive description to explore HPs’ perspectives about EOL research-related decision-making, across interprofessional roles. My findings indicated that these decisions were made in an emotionally charged context that influenced decision making. HPs experienced dialectic tensions in a minority of cases, for example, a tension between granting parents the autonomy to choose study enrollment for their children but wanting to protect those children from the adverse consequences of participation. These tensions were experienced as ethical struggles and sometimes, moral distress. HPs with limited involvement in decision making but who implemented decisions, particularly struggled. These results indicate that a small proportion of children participate in early phase anticancer treatment trials towards the EOL. Socioeconomic and other factors are associated with participation. HPs struggle with certain cases of EOL decision making, sometimes experiencing this as moral distress. Future research should explore potential barriers to trial participation and find ways to better support HPs involved in making and implementing decisions about studies. *CYP-C refers to the Cancer in Young People in Cancer, population-based database