What to Tell a Child?

The acute leukemia that attacks children is an especially cruel disease, not only because of the helplessness of its victims but because of the problems that it creates for parents, brothers and sisters. Until the 1950s, the average survival time for a child, after the diagnosis of acute leukemia, was well under a year. Now, with half-a-dozen palliative but no curative drugs available, the average survival time is about five years in major medical centers, and a handful of patients have held on for ten years or longer. The harsh fact remains, however, that a diagnosis of leukemia--cancer of the blood--is still an almost certain sentence of death, no matter how long deferred.

At the University of California Medical Center in San Francisco, four pediatric hematologists recently got together with a psychiatrist and a social worker to find out just what is the emotional effect of a child's leukemia on the parents, on siblings and on the victim himself. More important, the researchers wanted to find out what could be done to reduce the impact. That something needed to be done was obvious from the fact that in at least one half of the 20 families studied, some relative had required psychiatric care.

Shielding Parents. The very first question, says Psychiatrist Charles M. Binger, reporting for the group, was how soon the parents learned of the child's disease. In eight of the families studied, parents had suspected leukemia before any doctor ever mentioned it. The parents' first reactions ranged from outward calm to outright loss of control. Most suffered physical distress within the next few days or weeks, besides depression, anger, hostility and self-blame.

More remarkable was the insight of the child victims themselves. Most of those more than four years old, although not told directly of the diagnosis, "presented evidence to their parents that they were aware of the seriousness of their disease and even anticipated their premature death." The parents of 14 children tried to shield them from the diagnosis, yet eleven of these children indicated their sense of impending death. Only two teen-agers were told that they had leukemia and that there was no known cure for it. As a result of frank discussions, both their families reported "a more meaningful relationship with their child."

Just as parents tried to protect children from their illness, so the older leukemic children tried to protect their parents. "The children who were perhaps the loneliest of all," say the investigators, "were those who were aware of their diagnosis but at the same time recognized that their parents did not wish them to know. No one was left to whom the child could openly express his feelings of sadness, fear or anxiety."

Honest Reassurance. Siblings suffered too. Some felt guilty and feared that they too might suffer a fatal illness. Several complained of the parents' preoccupation with the sick child and felt rejected. A number developed severe bedwetting, headaches, poor school performance, depression and persistent abdominal pains. Nor were grandparents immune. Grief reactions and ignorance made some of them incapable of helping the sick child's parents. No fewer than ten families declared that one or both sets of grandparents had been more hindrance than help.

Presumably no one would baldly tell a child that he was suffering from an illness that was almost certain to prove fatal. Yet, say the San Francisco researchers: "It is a grave error to think that a child over four or five years of age who is dying of a terminal illness does not realize its seriousness. We have seen the pathetic consequence of the loneliness of a fatally ill child who has no one with whom he may talk over his concerns because his parents are trying to shield him. The question is not whether to talk about the diagnosis and prognosis, but rather how to let the child know that his concerns are shared and understood." It is important, say Binger and his colleagues, for the child to feel confident that he will not be deserted physically or emotionally and that he will not be told lies.

The Binger study has a direct relevance for an unfortunately large number of American families. Leukemia is now the deadliest disease among children aged four to 14, claiming 1,400 victims a year. It is the third leading cause of death in this age group, after accidents, and almost equal to all other cancers combined.

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