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More attention should be paid to palliative care for children dying of cancer

Cancer is the second leading cause of death in children, after accidents. Children dying of cancer typically receive aggressive treatment at the end of life. But many of these children suffer greatly in the last month of life, and aggressive attempts to control their symptoms often fail.

More attention should be given to palliative care for these children, concludes a study supported by the Agency for Healthcare Research and Quality (National Research Service Award training grant T32 HS00063). Joanne Wolfe, M.D., M.P.H., of the Dana-Farber Cancer Institute, and colleagues interviewed the parents of children who had died of cancer between 1990 and 1997 and who were cared for at Children's Hospital or the Dana-Farber Cancer Institute in Boston. They also reviewed the children's medical records.

Forty-nine percent of the children died in the hospital; nearly half of these deaths occurred in the intensive care unit. According to the parents, 89 percent of the children suffered "a lot" or "a great deal" from at least one symptom in their last month of life, most commonly pain, fatigue, or dyspnea (labored breathing); 51 percent suffered from three or more symptoms. Treatment alleviated pain for only 27 percent of children and dyspnea for only 16 percent of children. Based on a review of the medical records, parents were significantly more likely than physicians to report that their child had fatigue, poor appetite, constipation, and diarrhea, suggesting that these symptoms were not recognized by the medical team.

Suffering from pain was nearly three times more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care. It may be difficult for physicians to change their focus from treatment to comfort, even when there is little hope of a cure. Yet, earlier discussion of hospice care was associated with a greater likelihood that parents would describe their child as calm and peaceful during the last month of life. The researchers conclude that active involvement by caregivers committed to palliation can help alleviate the suffering of dying children.

See "Symptoms and suffering at the end of life in children with cancer," by Dr. Wolfe, Holcombe E. Grier, M.D., Neil Klar, Ph.D., and others, in the February 3, 2000 New England Journal of Medicine 342, pp. 326-333.

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