Most Parents Don"t Talk With Dying Child About Death, Many Regret It Later

By Rachael Myers Lowe

(September 14, 2004) - Do you talk to a terminally ill child about death?

It"s the kind of question no parent wants to have to answer; yet more than 1,500 parents in the U.S. are faced with this decision each year after their child has been diagnosed with a fatal cancer.

Swedish researchers investigated whether parents talked to their ill child about death. They contacted almost all the parents in Sweden who had a child die of a malignancy between 1992 and 1997. Just over a third of the parents (147) talked to their dying child about death; none of them regretted it.

Most of parents (66%) did not discuss death with their dying child. More than a quarter (27%) of those who had not talked about it with their child regretted their decision after the child"s death. The results of the Swedish research are published in the September 16 issue of the New England Journal of Medicine.

The age of the child, the parent"s perception that the child was aware that she/he was going to die, and the family"s religiousness were related to whether death was discussed with the child or not.  Parents of older children were more likely to have talked about death than those of younger children and if they had not, they were more likely to have regretted it. A discussion about death with a dying child was more likely to occur in a religious family than a non-religious family.

The authors concluded: Parents who seek advice - "Should I, or should I not, talk to my child about death?" - might benefit from knowing that no parent in this study regretted having talked about it." Healthcare workers, the authors go on to say, should help parents meet the needs of their terminally ill child knowing that many parents who had not talked about death with their dying child regretted it later.

In an accompanying editorial, Dr. Lawrence Wolfe of the Tufts- New England Medical Center pointed out that parents" first instinct is to shelter their terminally ill child and perhaps other children in the family.  Their treatment decisions are driven by a desire to "leave no stone unturned" in search for a cure.  As a result, doctors and nurses must be acutely aware of the smallest signals, the smallest openings to "plant the seed of bereavement, to broach the possibility of a child"s death," Wolfe writes. Once the possibilities become apparent,  "a compassionate approach to truth telling can begin."

Kenneth Tercyak, PhD., Director of Pediatric Psychology Research & Service at Georgetown University School of Medicine"s Pediatric Oncology Department, works with families facing these issues every day. In an email exchange with cancerpage.com, he said: "The challenge for many parents is not knowing what or how to say something of importance to their children, especially when it involves a stress or crisis."

But counseling is usually available, especially in the field of pediatric oncology.  "The field of pediatric oncology is multidisciplinary and we learn from each other"s background and training. One of the benefits of that approach for patients is that a number of professionals are available to assist parents in preparing for conversations with their children," Tercyak says.

While the New England Journal of Medicine article looked at a population of parents in Sweden, Tercyak believes its findings are relevant in the U.S.

"Time and time again we see instances where secrecy and noncommunication in families do not serve parents" or children "s needs and interests."

Although cure rates are increasing for children diagnosed with cancer, Candlelighters - the Childhood Cancer Foundation estimates 35% of children diagnosed with cancer will die from the disease.

SOURCE:

• New England Journal of Medicine 2004; 351: 1175-1186  article
• New England Journal of Medicine 2004; 351: 1251-1253  editorial
• Cancerpage Email exchange with Kenneth Tercyak, PhD, 9-15-04