To tell or not to tell:
that is the question

By William Wetherall

A version of this article appeared in
Far Eastern Economic Review, 131(5), 30 January 1986, pages 34-36

See also Wagatsuma's cancer

Terminal illnesses are as fatal in Japan as in other countries. But only one out of four cancer patients who died in Japanese national sanatoriums in 1983 were aware that they had the disease, according to a 1985 Ministry of Health and Welfare study.

Doctors and nurses at 100 of the 127 government-run medical treatment centres that were queried throughout the country reported that only 139 (5.4 percent of the 2,584 patients) who had died of cancer in the facilities definitely "knew" the nature of their illness, while 525 (20.3 percent) were only "thought to have known." The majority either "did not know" (1,403 or 54.3 percent) or were "uncertain" (517 or 20.0 percent).

Of the patients who definitely "knew" they had cancer, only 16 (0.62 percent) had been directly told by their doctors; the rest had learned of their diagnoses from relatives or friends.

Most of the patients who were "thought to have known" arrived at their own conclusions from the kind of therapy they were receiving, or through conversations with other patients.

Gan (cancer) is hardly a new word in the Japanese language. And according to character stereotypes, Japanese people are supposed to be stoic about death. So why the reluctance of Japanese medics to tell their patients the truth?

The anthropologist Hiroshi Wagatsuma attributed the unwillingness of his own doctors to admit that he was dying of oesophageal cancer to "the behaviour patterns that regulate Japanese culture." By this he meant that "it is generally accepted [in Japan] that one does not tell a patient the truth."

Wagatsuma observed from the way his own physicians had "lied" in answer to his direct questions, that "even if the doctor says nothing, the patient knows that one has cancer; and though nothing is said, the doctor knows that the patient knows. Without so much as uttering the name of the disease, the doctor can still say "Everything went well, didn't it," and the patient can reply "Thanks to you," ten years after an operation without spread or relapse. For there really seem to exist the kinds of mutual relationships in which conversations occur on the basis of ishin denshin [literally conveying one's heart with one's heart].

For Wagatsuma, relationships favouring "non-verbal communications" were the "essence" of Japanese culture. "For a doctor who regards this kind of relationship as ideal," he wrote, "a patient like me [who insists on being told the bad news] is considered an unmanageable 'alien'." His surgeon had said to him when pressed to disclose the facts: "You're a very exceptional case [to be told that you have cancer]."

Wagatsuma was an internationally recognised expert on why people in Japan (including ethnic and social minorities) behave and misbehave as they do. He had studied and taught at several universities in the US (Harvard, Berkeley, Hawaii, Pittsburgh, Los Angeles) for almost two decades before returning to Japan in the late 1970s.

As a totally bilingual psychological anthropologist, he was easily able to adapt himself to the social norms on the other side of the Pacific. Yet he claimed in a death-bed essay entitled "Is Cancer a Taboo Word?" that he had suffered "culture shock" when his American expectations of clinical directness refused to accommodate his Japanese appreciation for circumlocution.

Uncertain about what his doctors had found, Wagatsuma had spent a sleepless night worrying if his surgery had been a success, or was it too late and how long he had to live in the case of the latter. He could not stop trembling, and "a resentment toward all doctors raged in my chest." He felt that he would have had more will to fight, and would have been psychologically more composed, had his doctors been willing to resolve his suspicions when he had first expressed them.

Wagatsuma's views were only partly supported by the government study released in November 1985, four months after his death at the age of 58. The study indeed shows that very few doctors tell their terminal patients the truth. But it also suggests that most doctors and nurses do not assume that their patients are reading their minds.

According to the folklore widely endorsed but unproven by social scientists, Japanese are supposed to be especially adept at tacit or silent communications. The usual explanation for this "unique" ability is that Japan has been an island nation. Geographical isolation is supposed to have resulted in such a high degree of ethnic homogeneity that all Japanese think alike, hence even husbands and wives have little need for words to transmit their feelings of love, or hate as the case may be.

The government study, however, suggests that even in Japan, words not spoken are messages not received. If reliable, it means that either most terminal cancer patients know why they are dying but conceal their awareness so well that their doctors and nurses think that they do not know; or that they are extremely skilful at evading what must be in many cases the obvious truth.

Wagatsuma himself recognised that alongside one patient's "right to know" is another patient's "right not to know." And so he concluded that cancer should be disclosed on a case-by-case basis.

Psychiatrist Takeo Doi, director of Japan's National Institute of Mental Health and a close friend of Wagatsuma, believes that "a doctor who withholds the truth from a patient subjectively thinks that he does so out of compassion, not realising that his refusal to speak out is due to his own weakness." He also cautions that "American doctors do not necessarily tell the truth because they love the truth" but may disclose the details of an illness to protect themselves from malpractice suits.

Both Wagatsuma and Doi leave the impression that only Japanese doctors balk at disclosing the facts. In fact, "to tell or not to tell" is the dilemma of physicians the world over. Psychiatrist-cum-thanatologist Elisabeth Kubler-Ross writes in her best-seller On Death and Dying (Macmillan, 1969) that hospital staff are often concerned about a terminal patient's tolerance of "the truth." But she wonders "which truth?" for there are many views of any reality. And she recommends that doctors nurses and clergy ask simply: "How do I share this with my patient?" rather than "Should we tell?"

Kubler-Ross also provides evidence that "non-verbal communication" is a universal human capacity. "Most if not all of the patients know anyway," she says of people who are not directly told that their cancer is malignant. "They sense it by the changed attention, by the new and different approach that people take to them, by the lowering of voices or avoidance of rounds, by a tearful face of a relative or an ominous, smiling member of the family who cannot hide their true feelings."

Hitoshi Ishii, an otolaryngologist who successfully fought lung cancer, wrote in a novel called Cancer Carrier that doctors evade specific questions and otherwise make themselves unavailable for explanations, not because they are really busy or heartless, but because "they don't know the techniques of how to cope with patients; they are not taught that conversation with a patient is an important therapeutic measure, and few doctors try to learn how."

The government study may change all this. It recognises the need to consider ways of dealing with cancer patients on the premise that they "know." And as though to take up Wagatsuma's dying torch of hope that Japanese doctors will become more frank with their patients, it recommends further research into how terminal care can be improved, through making hospitals more like home, and by increasing staff awareness of the needs of patients who know they are dying.