“Is This the End or a Bend?”: Navigating Hope at End of Life in Pediatric Oncology (GP708)

Abstract

•Describe the perspectives of hope of HCPs, parents, and AYAs at the end of life.•Compare the variety of perspectives of hopeful thinking between the groups. Whereas adolescent and young adult (AYA) patients, parents, and health care providers (HCPs) agree that hope is a critical construct at the end of life (EOL), how they define and support it varies. Understanding how and when to diversify hopes beyond “cure” is critically important for effective communication and decision-making. Identify and compare perspectives of hope at the EOL among HCPs, parents, and AYAs. This cross-sectional qualitative study included 4 cohorts of participants: interdisciplinary HCPs who work with oncology patients treated at Seattle Children's Hospital, bereaved parents of deceased AYAs with cancer, parents of AYAs living with advanced cancer, and AYAs with advanced cancer. Trained staff conducted in-person individual semi-structured interviews. Items focused on EOL experiences. Two primary coders conducted qualitative analyses using Dedoose and Atlas.ti software to create themes using a modified grounded theory approach. Consensus meetings with the research team resolved discrepancies and compared themes between cohorts. We conducted N=88 interviews with HCPs (n=19), Bereaved parents (n=15), Parents of living AYAs (n= 22), and AYAs themselves (n=32). Hope was a consistent theme in all interviews, but each cohort described hope differently. Most HCPs suggested that hope equates to cure. Bereaved parents discussed the evolution of their hopes at EOL, while parents of AYAs with advanced cancer expressed concern that hoping for something other than cure was akin to “giving up.” For AYAs, hope was referenced as a source of strength that got them through the day but wasn't necessarily about a cure. Hope is an important part of EOL care that is complex and encompasses meanings among HCPs, families, and patients. As goals of care change, so should conversations about hopes and wishes.