Factors associated with the quality of care at the end of life in children with cancer

Abstract

8529 Background: Factors associated with parents' and physicians' assessments of the quality of care for children at the end of life have not been previously described. Methods: Between 1997 and 2001 we interviewed 144 parents of children who died of cancer while receiving care at the Dana-Farber Cancer Institute/Children's Hospital Boston and Children's Hospital and Clinics, St Paul and Minneapolis (overall response rate 63%). Parent assessment of the primary oncologist's overall care as “excellent” or “very good” was used as the outcome variable in a multivariable logistic regression model. A second logistic regression model used the oncologist's assessment of the child's care having gone “as well as could be expected” as the outcome. Covariates used to build both models included parent-rated aspects of communication with the oncologist and the parent's assessment of the child's symptoms and suffering. Results: Higher parent ratings of overall care were associated with providers giving clear information about what to expect in the end of life period (OR 19.90, p=0.0169), communicating in a sensitive and caring manner (OR 7.67, p=0.0095), communicating directly with the child when appropriate (OR 11.18, p=0.0011), and preparing the parent for the circumstances surrounding the child's death (OR 4.84, p=0.0339). Parent report of the child's pain and suffering were not significant correlates of parental ratings of care (p=1.0 and 0.41, respectively). Higher oncologists' ratings of care were inversely associated with the parent's report of the child's experience of pain (OR=0.15, p=0.0148) and a long period of hospitalization in the last month of life (OR 0.24, p=0.0007, for greater than 10 hospital days). Parent-rated communication factors and parent ratings of overall care were not significant correlates of oncologist-rated care. Conclusions: While physicians focus on pain and length of hospitalization as indicators of quality of care for children at the end of life, optimal communication is highly valued by parents. No significant financial relationships to disclose.