Context Parents' understanding of prognosis or decision making about palliative
care for children who die of cancer is largely unknown. However, a more accurate
understanding of prognosis could alter treatment goals and expectations and
lead to more effective care.
Objectives To evaluate parental understanding of prognosis in children who die
of cancer and to assess the association of this factor with treatment goals
and the palliative care received by children.
Design, Setting, and Participants Survey, conducted between September 1997 and August 1998, of 103 parents
of children who received treatment at the Dana-Farber Cancer Institute and
Children's Hospital, Boston, Mass, and who died of cancer between 1990 and
1997 (72% of those eligible and those located) and 42 pediatric oncologists.
Main Outcome Measure Timing of parental understanding that the child had no realistic chance
for cure compared with the timing of physician understanding of this prognosis,
as documented in the medical record.
Results Parents first recognized that the child had no realistic chance for
cure a mean (SD) of 106 (150) days before the child's death, while physician
recognition occurred earlier at 206 (330) days before death. Among children
who died of progressive disease, the group characterized by earlier recognition
of this prognosis by both parents and physicians had earlier discussions of
hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P = .01), better parental ratings of the quality of home
care (OR, 3.31; 95% CI, 1.15-9.54; P = .03), earlier
institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P = .02), less use of cancer-directed therapy during the
last month of life (OR, 2.80; 95% CI, 1.05-7.50; P
= .04), and higher likelihood that the goal of cancer-directed therapy identified
by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P = .002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P = .01 for parents).
Conclusion Considerable delay exists in parental recognition that children have
no realistic chance for cure, but earlier recognition of this prognosis by
both physicians and parents is associated with a stronger emphasis on treatment
directed at lessening suffering and greater integration of palliative care.