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Previous Volume 342:326-333 February 3, 2000 Number 5 Next

	Full Text PDF Editorial by Morgan, E. R. Letters Add to Personal Archive Add to Citation Manager Notify a Friend E-mail When Cited PubMed Citation

ABSTRACT

Background Cancer is the second leading cause of death in children, after accidents. Little is known, however, about the symptoms and suffering at the end of life in children with cancer.

Methods In 1997 and 1998, we interviewed the parents of children who had died of cancer between 1990 and 1997 and who were cared for at Children's Hospital in Boston, the Dana–Farber Cancer Institute, or both. Additional data were obtained by reviewing medical records.

Results Of 165 eligible parents, we interviewed 103 (62 percent), 98 by telephone and 5 in person. The interviews were conducted a mean (±SD) of 3.1±1.6 years after the death of the child. Almost 80 percent died of progressive disease, and the rest died of treatment-related complications. 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. Of the children who were treated for specific symptoms, treatment was successful in 27 percent of those with pain and 16 percent of those with dyspnea. On the basis of 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. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care (odds ratio, 2.6; 95 percent confidence interval, 1.0 to 6.7).

Conclusions Children who die of cancer receive aggressive treatment at the end of life. Many have substantial suffering in the last month of life, and attempts to control their symptoms are often unsuccessful. Greater attention must be paid to palliative care for children who are dying of cancer.

Source Information

From the Departments of Pediatric Oncology (J.W., H.E.G., S.B.L., J.M.E.), Biostatistical Science (N.K.), and Adult Oncology (J.C.W.) and the Center for Outcomes and Policy Research (J.W., J.C.W.) Dana–Farber Cancer Institute, Boston; the Department of Medicine, Children's Hospital, Boston (J.W., H.E.G., S.S.-S.); the Department of Medicine, Brigham and Women's Hospital, Boston (J.C.W.); and the Department of Clinical Bioethics, National Institutes of Health, Bethesda, Md. (E.J.E.).

Address reprint requests to Dr. Weeks at the Center for Outcomes and Policy Research and the Department of Adult Oncology, Dana–Farber Cancer Institute, 44 Binney St., Boston, MA 02115, or at joanne_wolfe{at}dfci.harvard.edu.

Full Text of this Article

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Symptoms and Suffering at the End of Life in Children with Cancer
Deremo D. E., Fahner J. B., Sandoval C., Gemke R. J.B.J., Zwaan C. M., Révész T., Goldman A., Wolfe J., Grier H. E., Weeks J. C., Morgan E. R., Murphy S. B.
Extract | Full Text  
N Engl J Med 2000; 342:1997-1999, Jun 29, 2000. Correspondence

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