There is considerable delay among parents in recognizing that terminally ill children with cancer have no realistic chance of a cure, according to a study published in the November 15, 2000, issue of The Journal of the American Medical Association, a theme issue on end-of-life care. Earlier recognition of this prognosis by both parents and physicians could lead to stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care, the authors conclude.

Joanne Wolfe, M.D., M.P.H., of the Dana-Farber Cancer Institute and Children's Hospital in Boston, and colleagues studied the association between parental understanding of prognosis in children who died of cancer and the treatment goals and palliative care received by the children.

Dr. Wolfe presented the findings of the study on November 14, 2000, at a JAMA media briefing on end-of-life care.

In their previous study, the authors reported that according to parents, children who die from cancer experience significant suffering and inadequate palliation in the last month of life. They write that one potential obstacle to more effective integration of palliative care into the treatment of children with advanced cancer is that unrealistic prognostic expectations by physicians and/or parents may be leading to inappropriate treatment goals.

According to background information in the study, cancer remains the leading cause of nonaccidental death in childhood.

The authors interviewed 103 parents of children who died of cancer between 1990 and 1997, as well as surveying the child's primary oncologist and reviewing medical charts. They asked when parents and physicians became aware that the child had no realistic chance for cure; what factors were associated with a greater concordance in the timing of parent and physician awareness that the child was terminally ill; whether understanding of the child's prognosis altered parents' treatment goals; and what outcomes were associated with earlier parent-physician recognition that the child had no realistic chance for cure.

"Parents first recognized that the child had no realistic chance for cure a mean of 106 days before the child's death, while physician recognition occurred earlier at 206 days before death," the authors write.

Among physicians and parents whose recalled prognostic estimates differed, parents were significantly (three times) more likely to believe that the child would be cured.

"When asked how they first came to understand that their child had no realistic chance for cure, only 49 percent of parents reported that this resulted from a discussion with the medical team; 30 percent reported that this understanding came from a perceived change in the way their child looked or acted, and 9 percent reported that this understanding came from a feeling or dream," they continue.

The authors report there was greater concordance in the timing of physicians' and parents' understanding that the child had no realistic chance for cure when a psychologist or social worker was involved in the child's care.

To assess the relationship between the timing of recognition that the child had no realistic chance for cure and the outcomes of end-of-life care, children were classified into groups based on whether recognition by parents and physicians occurred more or less than 50 days prior to death. For the group in which there was recognition by both parent and physician more than 50 days prior to death, there was a stronger emphasis on treatment aimed at lessening suffering. The authors report that there was earlier documentation of a discussion of hospice, better parental ratings of the quality of care delivered by the home care team, earlier institution of a do-not-resuscitate order, less use of cancer-directed treatment in the last month of life, and [five times] higher likelihood that both physician and parent identified the primary goal of cancer-directed therapy to be to lessen suffering.

Furthermore, they state "in the last month of life, among the 41 children who continued to receive cancer-directed therapy, 42 percent of physicians but only 19 percent of parents reported that the primary goal of this treatment was to lessen suffering."

The authors recognize that in a cross-sectional retrospective study such as this, the direction of a causal relationship between these factors cannot be established with certainty. "Nonetheless, our findings suggest that interventions aimed at facilitating earlier recognition by both physicians and parents that an illness may be fatal could contribute to improving quality of life at the end of life," they write.