ABSTRACT
PURPOSE: Little is known about how couples care for the terminally ill child with cancer. We assessed both parents' understanding of prognosis and treatment goals for children with cancer and explored whether sex mediates these views. We also investigated whether discordance within couples regarding treatment goals was related to parental perception of the child's end-of-life (EOL) experience. METHODS: We surveyed mothers and fathers of children who died of cancer and were cared for at Children's Hospital (Boston, MA) and the Dana-Farber Cancer Institute (Boston, MA) between 2000 and 2004. Our sample included 38 couples (response rate, 56%). RESULTS: Willingness to participate did not differ by sex. At diagnosis, fathers and mothers held a similar understanding of the child's prognosis, and 58% of couples agreed on the goal of cure. During the EOL period, a majority of fathers and mothers reported lessening suffering as the primary goal. However, within couples there was poor agreement about the primary goal of care (kappa = 0.07). When parents did not agree on the primary goal of lessening suffering, both parents were more likely to report that the child suffered significantly from cancer-directed treatment (P = .03). CONCLUSION: Though parent goals are often concurrent at diagnosis, they frequently differ during the EOL period. Parent disagreement about the goal of lessening suffering at the EOL appears to impact how parents describe their child's experience of suffering. Creating opportunities for parents to work through their goals together may lead to improvements in the child's EOL experience.
