Too Much or Not Enough: Decisional Regret in Parents of Children Who Died from Cancer (SCI960)

Abstract

1.Examine the prevalence of decisional regret expressed by parents of children that died from cancer in their early grief experience (6-24 months following their child’s death).2.Characterize the types of regrets expressed by bereaved parents early in their grief experience.3.Explore ways in which the interdisciplinary palliative care team may reduce parental decisional regret. Previous research suggests that parents who express regret after the death of their child may experience more intense grief reactions. However, little is known about the degree of decisional regret in bereaved parents and the types of regrets expressed early in their grief experience. To quantify the percentage of parents expressing regret over decisions made at the end of their child’s life and to characterize these regrets. As a part of a larger survey-based study examining the experience of parents 6-24 months following the death of their child, parents were asked if they had regrets about decisions made at the end of their child's life (yes/no/I don’t know) and to elaborate using free text. These responses were categorized. Forty-nine (36%) of 137 eligible parents completed the survey; 48 answered about regrets. Nineteen (40%) endorsed having regret(s), 23 (48%) indicated having no regrets and 6 (12%) said I don’t know. Notably, 4 parents who indicated having no regrets/I don’t know used the free text-response to report one or more regret(s). More mothers (48%) than fathers (31%) had regrets and most parents expressed multiple regrets. The free text responses fell into the following categories: not having enough information/knowledge; not advocating strongly for their child; not doing enough or more of certain treatments; regretting certain treatments or continued treatment, and not controlling symptoms. Many parents expressed regret over decisions made at the end of their child’s life. The regrets were multiple and varied. Further research is needed to examine the association between decisional regret and parental grief reactions and psychosocial outcomes.