Talking about Death w/Terminally Ill Children

Talking about Death with Children Who Have Severe Malignant Disease

Ulrika Kreicbergs, R.N., Unnur Valdimarsdóttir, Ph.D., Erik Onelöv, M.Sc., Jan-Inge Henter, M.D., Ph.D., and Gunnar Steineck, M.D., Ph.D.

ABSTRACT Background One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child.

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 429 stated whether or not they had talked about death with their child.

Results None of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27 percent) who did not talk with their child about death regretted not having done so.

Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it (47 percent, as compared with 13 percent of parents who did not sense this awareness in their child; relative risk, 3.7; 95 percent confidence interval, 2.3 to 6.0).

The same variable was related to having talked about death (50 percent vs. 13 percent; relative risk, 3.8; 95 percent confidence interval, 2.6 to 5.6), as was being religious (42 percent vs. 25 percent; relative risk, 1.7; 95 percent confidence interval, 1.2 to 2.3). The child's age was related to both having talked about death and the parents' regretting not having talked about it.

Conclusions Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death.

Source Information

From the Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology (U.K., U.V., E.O., G.S.), and the Childhood Cancer Research Unit (U.K., J.-I.H.), Karolinska Institutet, Stockholm.

Address reprint requests to Dr. Steineck at the Division of Clinical Cancer Epidemiology, Karolinska Institutet, Z6:01 Karolinska Hospital, SE-171 76, Stockholm, Sweden, or at

New England Journal of Medicine,

Volume 351:1175-1186 September 16, 2004 Number 12

BOOK: Talking with Angel: About Illness, Death & Survival

Author Evelyn Elsaesser-Valarino, Swiss

Hospice Referral For Children w/Cancer

J Clin Onco, 3/06

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