Clinical Question: Do parents regret talking or not talking about death to their children with cancer?

Setting: Outpatient (specialty)

Study Design: Cross-sectional

Synopsis: The researchers contacted all of the parents in Sweden of children who had received a diagnosis of cancer before 17 years of age and who died before 25 years of age. They identified 561 parents of 368 children; 449 of the parents answered a survey, and 429 indicated whether they had discussed death with their child. The questionnaire was detailed, with a total of 365 items. For this report, the key question was, “Did you talk about death with your child at any time?” The follow-up question was whether the parents regretted their choice. The researchers also asked the parents when they thought their child realized he or she was going to die, with the responses ranging from “never realized” to “three years or more before he or she died.” Although only 147 parents had talked about death with their child, none of them regretted it. Of the 258 parents who had not talked about death with their child, 27 percent regretted not having done so. Parents were more likely to talk about death with their child if they sensed that their child was aware of his or her imminent death (adjusted odds ratio = 4.5; 95 percent confidence interval, 2.6 to 7.7), if they were religious, or if the child was older at the time of diagnosis. Parents were more likely to regret not having talked with their child about death if the child was older at his or her death, if the parent was the mother (adjusted odds ratio = 2.6), if the parent sensed that the child was aware of his or her imminent death (adjusted odds ratio = 4.7), or if the parent was married to or living with someone other than the child’s other biologic parent.

Bottom Line: Although most parents in this Swedish survey did not talk to their children with cancer about their imminent death, those who did so did not regret it. Also, 27 percent of parents who did not talk with their children about death regretted not doing so. (Level of Evidence: 4)