End-of-Life Care

Doctor-patient communication is critical to how parents view the quality of end-of-life care for children with cancer

Many dying children suffer from pain and other troubling symptoms at the end of life. Also, parents' recognition of their dying child's poor prognosis often lags far behind that of the doctor, a delay that has been linked to aggressive instead of comfort care at the end of the child's life. Parents of children who die of cancer consider doctor-patient communication a key determinant of high-quality physician care, concludes a study supported in part by the Agency for Healthcare Research and Quality (HS00063).

Researchers surveyed 144 parents of children who received treatment at 2 cancer clinics and by 52 pediatric oncologists between 1990 and 2001. Parents were nearly 20 times more likely to highly rate physician care when physicians gave clear information about what to expect in the end-of-life period. Parents were nearly 8 times more likely to highly rate their care if doctors communicated information with care and sensitivity, and 11 times more likely to do so if the doctors communicated directly with the child when appropriate. Finally, parents were nearly 5 times more likely to highly rate care if the doctor prepared the parent for circumstances surrounding the child's death.

Parent reports of the child's pain and suffering were not significantly correlated with their ratings of care; that is, they did not seem to blame the doctors for this or perhaps felt it was part of the dying process. In contrast, oncologists rated care lower when the parents reported that the child experienced pain or spent more than 10 days in the hospital in the last month of life.

See "Parent and physician perspectives on quality of care at the end of life in children with cancer," by Jennifer W. Mack, Joanne M. Hilden, Jan Watterson, and others, in the December 20, 2005, Journal of Clinical Oncology 23(36), pp. 9155-9161.

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