Background: The guidelines of the International Society of Pediatric Oncology emphasize the child's right to be informed about his or her prognosis, but practice varies concerning how the imminence of death is communicated. Moreover, we do not know whether it is fruitful to encourage parents to talk with their child about death.
Methods: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 answered a questionnaire and 405 responded to the questions on talk and regret.
Results: None (0 percent) of the 147 bereaved parents who reported they had talked with their child about death regretted this talk. In contrast, 69 (27 percent) of the 258 who had not talked with their child about death regretted not having talked. Regret was particularly evident (relative risk 3.7, 95 percent confidence interval 2.3 to 6.0) among parents who had not talked about death despite their child being aware of his or her impending death. Parents who regret not talking with the child report more anxietyAnxiety (relative risk 1.6, 95 percent confidence interval 1.0 to 2.4) and depression (relative risk 2.3, 95 percent confidence interval 1.6 to 3.3) at follow-up compared to others.
Conclusion: None of the parents that talked about death with their child dying of cancer in Sweden between 1992 and 1997 regretted this. We may consider encouraging parents in doubt to talk about death with their child, particularly if the child is aware of her or his imminent death.