Bereaved parents' views on end-of-life care for children with cancer: Quality marker implications

Abstract

Background End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology. Methods This study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer >= 6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care). Results The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment. Conclusions This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.