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Once parents accept that their child's cancer is terminal, palliative care can begin to make the child more comfortable

Parents whose children have died of cancer have reported in previous studies that their children suffered significantly during their last month of life. One obstacle to increasing comfort for these dying children is the reluctance by parents and doctors to accept that the child's cancer is incurable.

Since 75 percent of children who get cancer are cured, pediatric oncologists have less experience talking to parents about terminal prognoses and may find it difficult to do so. Doctors usually accept that a child is terminally ill about 6 months before the child's death, compared with 3 months for the parents, according to a study supported by the Agency for Healthcare Research and Quality (National Research Service Award training grant T32 HS00063).

Earlier recognition of this prognosis by both doctors and parents was associated with more comfort treatment and greater integration of palliative care, explains lead author, Joanne Wolfe, M.D., M.P.H., of the Dana-Farber Cancer Institute. Dr. Wolfe and her colleagues surveyed 42 pediatric oncologists and 198 parents of children who died of cancer at one medical center between 1990 and 1997. Medical records identified the timing of parental understanding of the child's prognosis with that of the doctor's. Parents first recognized that the child had no realistic chance for cure about 3 months prior to the child's death compared with 6 months for the doctor (a mean of 106 vs. 206 days).

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; 1 is equal odds), better parental ratings of the quality of home care (OR 3.31), earlier institution of a do-not-resuscitate order (OR 1.03), less use of cancer-directed therapy during the last month of life (OR 2.8), and higher likelihood that the goal of cancer-directed therapy identified by both doctor and parent was to lessen suffering (OR 5.17 for physicians and OR 6.56 for parents). Use of a psychologist or social worker to facilitate earlier recognition by parents that their child's illness would probably be fatal could improve the child's quality of life at the end of life, suggest the researchers.

More details are in "Understanding of prognosis among parents of children who died of cancer," by Dr. Wolfe, Neil Klar, Ph.D., Holcombe E. Grier, M.D., and others, in the November 15, 2000 Journal of the American Medical Association 284(19), pp. 2469-2475.

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