Unrealistic parental expectations for cure in poor-prognosis childhood cancer

Abstract

Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer.

Methods: The authors conducted a prospective cohort study at 9 pediatric cancer centers that enrolled 95 parents of children with recurrent or refractory, high-risk neuroblastoma (63% of those who were approached), a condition for which cure rarely is achieved. Parents were surveyed regarding the child's likelihood of cure; their primary goal of care; the child's symptoms, suffering, and quality of life; and regret concerning the last treatment decision. Medical records identified care and treatment decisions.

Results: Only 26% of parents recognized that the chance of cure was <25%. When asked to choose a single most important goal of care, approximately 72% chose cure, 10% chose longer life, and 18% chose quality of life. Parents were more likely to prioritize quality of life when they recognized the child's poor prognosis (P = .002). Approximately 41% of parents expressed regret about the most recent treatment decision. Parents were more likely to experience regret if the child had received higher intensity medical care (odds ratio [OR], 3.14; 95% CI, 1.31-7.51), experienced suffering with limited benefit from the most recent treatment (OR, 4.78; 95% CI, 1.16-19.72), or experienced suffering from symptoms (OR, 2.91; 95% CI, 1.18-7.16).

Conclusions: Parents of children with poor-prognosis cancer frequently make decisions based on unrealistic expectations. New strategies for effective prognosis communication are needed.

Keywords: communication; end of life; pediatric; prognosis; regret.

Figure 1.

Theoretical model for the current study.

Figure 2.

(A) Relationship between parent understanding of prognosis and goals of care among 90 parents with complete responses to both items. The P value was calculated using the chi-square test. (B) Relationship between parent report of suffering from symptoms and goals of care among 90 parents with complete responses to both items. The P value was calculated using the chi-square test. (C) Parents’ goals of care for their own child and goals of care they believe a “good parent” would have for a hypothetical child among 90 parents with complete responses to all 3 items. * P values are calculated using tests of symmetry in comparison with parent's primary goal of treatment for his or her own child.