Talking About Death With Children Who Have Terminal Cancer
Amid the grim circumstances of having a terminally ill child with cancer, parents must confront the dreaded discussion of untimely death. While talking about death may be a form of consolation for a sick child, it is psychologically taxing for many parents. Doctors who care for these children also face difficult decisions about how to deliver the prognosis and advise parents about handling the situation.
According to some evidence, terminally ill children can benefit from talking about death;furthermore, many of them may truly desire to do so. However, the attitudes of parents on the subject are largely unknown. Researchers in Sweden conducted a retrospective study to examine the feelings and behaviors of parents who had recently dealt with the death of a child from cancer. Their findings are presented in the September 16, 2004 issue of the New England Journal of Medicine .
About the Study
In 2001, researchers attempted to contact all the parents of children in Sweden who had died from cancer between 1992 and 1997. Children whose parents were eligible for the study were all those diagnosed with malignant disease before the age of 17 and who died before the age of 25. The doctors who treated the children were also asked for their approval before any parents were contacted. Out of 561 eligible parents, 449 responded (43% men, 56% women) to a 195-question survey.
- Thirty-four percent of parents (147) had discussed death with their child. Of these, 79% (116) had talked about it during the child’s last week of life, and 76% (111) had used the word “death” during their discussions. None of the parents who had discussed death with their child regretted it; of those who had not had the discussion, 27% regretted not having done so.
- According to the parents, 63% of children were not informed that their illness was incurable. (This was confirmed by their doctors in 17% of cases.) Forty-six percent reported that they never sensed that their child was aware of his or her imminent death, and 22% reported that they sensed this awareness only during the child’s last week of life. Parents who sensed their child was aware of his or her imminent death were almost four times as likely to discuss death than those who did not sense this (50% versus 13%). Of those who did not discuss death with their child, parents who sensed their child was aware of his or her imminent death were also almost four times as likely to regret not having done so (47% compared to 13%).
- Parents who were somewhat, very, or quite religious were almost twice as likely to discuss death than those who were “not at all” religious. The older the child and parents were at the time of diagnosis or death, the more likely the parents were to discuss death with their child, and the more likely they were to regret it if they had not.
- A third of parents who regretted their decision not to talk about death reported their current anxiety level as moderate or high, in comparison to 21% of those who did not regret this same decision. The statistic was even more pronounced for feelings of depression (48% versus 21%).
How Does This Affect You?
While most readers will fortunately not relate directly to the situation of losing a child to terminal illness, all of us will confront the imminent deaths of aging loved ones, and the decision to communicate about this openly or not is something we will all need to face.
On this note, the most compelling finding of the Swedish study is probably that no participating parents regretted having talked about death with their child, while over a quarter of those who did not were regretful. Moreover, 30% of this group reported some anxiety and almost half reported depression. In sum, the researchers conclude: “Our finding… supports the recommendation by the International Society of Paediatric Oncology that parents communicate honestly with a sick child about the prognosis.” Based on this study, the discussion of death appears to offer emotional benefits not only to the child, but to his or her parents as well.
In retrospect, it may seem surprising that so few of these parents discussed death with their children, since the benefits, at least among pediatricians, are well known. It is likewise surprising that the majority of the children in this study (63%) did not know the nature of their diagnosis. This could reflect the young age of the population, or it could represent cultural differences that would be important to study in other countries.
Finally, the study leaves some important questions unanswered. For example, was it the child or parent who initiated the discussion about death? Did it come up several times or only once? Most importantly, why or why not did parents decide to discuss death with their child? And how did their doctor advise them in this matter?
Project on Death in AmericaOpen Society Institute
Young People with Cancer: A Handbook for Parents
National Cancer Institute
Kreicbergs RN, Valdimarsdottir U, Onellov E, Henter J-I, Steneck G. Talking About Death with Children Who Have Severe Malignant Disease. The New England Journal of Medicine . 2004; 351(12): 1175-1186.
Last reviewed September 2004 by ]]>Richard Glickman-Simon, MD]]>
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