Treatment Decision Making and Regret in Parents of Children With Incurable Cancer

Abstract

Background: The treatment-related decision-making process is a highly emotional time for parents of children with incurable cancer, and they tend to continue the cancer-directed treatment even when they realize that there is no cure for their child.

Objective: To evaluate whether parents involved in different treatment decisions regretted their treatment decision after their child's death.

Methods: We collected prospective data from 418 parents of children who died of incurable cancer after receiving cancer care at 1 of 4 hospitals. We assessed parent decisional regret and its association with the type of treatment decision made (non-cancer-directed vs cancer-directed). Propensity score-matched analysis (at a ratio of 1:1) was performed.

Results: One hundred forty-eight parents (35.4%) reported heightened regret. Two isonumerical arms with 103 (non-cancer-directed) and 103 (cancer-directed) resulted after propensity score matching. Parents with a cancer-directed treatment decision (relative risk, 1.53; 95% confidence interval, 1.24-1.90; P = .002) were more likely to report decisional regret compared with those with a non-cancer-directed decision.

Conclusion: Bereaved parents with a cancer-directed treatment decision are more likely to experience increased regret for their decision than bereaved parents involved in a non-cancer-directed treatment decision.

Implications: Shared-decision aids should be prepared for young parents with low education to improve disease-related knowledge, accurate risk perceptions, and options congruent with parents' values.