Emperor Not Told : Cancer Still Taboo Word for Japanese

TOKYO —  Palace officials reacted with indignation when two news organizations dared to report what was already obvious to many Japanese--that Emperor Hirohito, seriously hemorrhaging and spilling blood through his bowels, is battling cancer.

But, in fact, the palace had unwittingly confirmed the real nature of the emperor’s grave illness a year ago, in a cryptic dance of double-speak around the taboo of his unnamable disease.

That occurred when chief court physician Akira Takagi told the public he found no signs of cancer in a biopsy taken during Hirohito’s intestinal bypass operation Sept. 22. At the same time, however, Takagi said he would not disclose the purportedly favorable test results to the emperor himself.

Shielded Him From Truth

Of course, there was no reason why the emperor should not be told if his inflamed pancreas were indeed free from malignancy. The palace apparently lied to the public, making new clothes for the emperor’s illness, to protect the patient from the truth in case news reports should filter back to him.

But this was not a case of Hirohito, 87, being given special treatment because he is the august symbol of the state, once considered a living god. In Japan, he was being kept in the dark just as any other mortal might have been.

The word cancer still carries a stigma of fear and shame in Japan, where cancer patients are routinely denied the right to know the cause of their suffering, to participate in decisions about their treatment and, if necessary, to prepare to meet their death.

‘Decades Behind Times’

“We have all the technology of the 21st Century,” said Dr. Makoto Kondo, a radiologist at Keio University Hospital. “But the relationship between doctor and patient is still decades behind the times. The patient is simply supposed to shut up and let the doctor make all the decisions.”

The practice of withholding the truth from cancer patients would be an anachronism in most other developed countries, but in Japan it is firmly entrenched along with the belief that physicians are lofty savants whose judgment is beyond question. Malpractice suits are extremely rare here, particularly the kind that forced U.S. doctors to begin disclosing cancer diagnoses about 25 years ago.

Although recent surveys show that most Japanese doctors think cancer patients should be told the truth, it is still the norm for the physician to enlist the patient’s family in a conspiracy of deception. Often this involves a cheerful facade and a subtle game of tacit communication, where the patient may be given nonverbal hints about his condition but not allowed to discuss things openly.

“Even if the doctor says nothing, the patient knows that he has cancer; and though nothing is said, the doctor knows that the patient knows,” wrote Hiroshi Wagatsuma, an anthropologist who studied the psychology of communication between doctors and their patients as he was dying of esophageal cancer in 1985.

In a posthumously published essay, Wagatsuma attributed the silence to “behavior patterns that regulate Japanese culture” and that “protect doctors from facing death” in their patients. Japanese doctors are not trained to deal with the topic of mortality, nor are they interested, Wagatsuma concluded.

In the case of Yujiro Ishihara, a renowned film actor who died last year, doctors did not even tell his wife that he had cancer. Only senior executives in Ishihara’s production company were informed. Ishihara’s brother thinks the patient caught on before his death, but remained silent to avoid causing pain to the people around him.

“We have a roundabout way of saying things in Japan,” said Koichi Nakashima, an official of the Japan Cancer Society. “We don’t tell our wives outright that we love them, and it’s the same with discussing cancer. It depends on psychological strengths, but many people cannot handle the truth straight on.”

Justified by Monk’s Tale

Nakashima recounts the tale of a Buddhist monk who demanded that his doctor tell him whether or not he had cancer, insisting that he could handle any bad news because he had already attained enlightenment. Soon after the doctor informed him that yes, he did indeed have cancer, the monk became acutely depressed and lost his appetite. He died within a few months, sooner than if he had remained in ignorance of his disease.

“That monk story is spread all over Japan, but nobody ever knows what his name was or when he died,” said Kondo, the Keio University radiologist who published a book earlier this year attacking traditional Japanese cancer therapy. “People bring out the monk whenever they want to legitimize the old ways.”

Besides the torment of suspecting cancer--but never knowing for sure--the consequences of ignorance can be as life-threatening as the disease itself, Kondo said. Many kinds of cancer can be treated and cured if caught at an early stage, but aggressive therapy requires the informed cooperation of the patient.

Denied Choice of Therapy

Also, patients can be cheated out of making choices in therapy when they are not informed.

Typically a Japanese woman diagnosed as having breast cancer will go under the knife without being told of the real nature of her surgery. She may awake from anesthesia to the shock of finding that an entire breast was removed along with the pectoral muscle in the traditional radical mastectomy that remains standard procedure in Japan. The patient would never learn that breast-conservation surgery can be just as effective in treating certain kinds of cancer.

Atsuko Chiba, a free-lance journalist, became one of the first Japanese patients to break the taboo on discussing cancer when she literally bared her breasts for a photographer and documented her mastectomy in 1981. Chiba continued to write about her courageous fight against the disease, which spread to her lymph system and brain, until she died in New York last year at 45.

“It is truly pathetic that most Japanese cancer patients are given groundlessly optimistic reports on their prospects,” Chiba wrote. “Because of this, a lot of them just waste time when therapy takes effect and their condition improves.

Many ‘Overcome With Regret’

“I have seen many of these cases, when afterward they are overcome with regret,” she continued. “Both they and their families say they would have done things differently if they had grasped the truth about their disease.”

In Hirohito’s case, the Asahi newspaper and the Kyodo News Service broke the conspiracy of silence by reporting Sept. 24 that cancerous cells had indeed been found last year in the biopsy of the emperor’s pancreas and duodenum. The Imperial Household Agency issued sharp complaints to the news organizations but it did not dispute the facts contained in the reports.

“At this point where the emperor’s consciousness is still clear and he is struggling with his illness, publishing the article was deemed totally inappropriate,” household agency spokesman Kenji Maeda said. “Taking into account the emperor’s feelings, the decision to publish such an article apparently lacks consideration.”

Transfusions Since Sept. 19

Asahi officials said they decided to publish the report after editors concluded that the emperor was too incapacitated to read any newspaper. Television networks did not carry the news, because the emperor was said to be watching broadcasts of the autumn sumo tournament and the Olympic Games in Seoul. Hirohito has been bedridden and clinging to life with the help of massive blood transfusions since he collapsed and vomited blood Sept. 19.

The Japanese media have documented in exhaustive detail the emperor’s symptoms, changes in his vital signs and contents of his intravenous drip, much as the U.S. media provided blanket coverage of President Reagan’s colon cancer surgery in 1985. But with the brief exception of the Asahi and Kyodo reports, the name of Hirohito’s disease has remained unspoken.

Whether or not knowledge of his cancer will sap his will to live is entirely up to conjecture, but many observers assume that the emperor, a man of scientific learning as a marine biologist, may have been aware of the truth.

Out of the Shadows

In any event, the public fiction surrounding his illness has been a setback for a growing movement to bring cancer--the most common cause of death in Japan--out of the shadows. The debate over the patient’s right to know could gain new prominence once the emperor dies and the ban on serious discussion of his illness is lifted. But the taboo is likely to linger.

“The era when cancer was synonymous with death (has) lasted too long,” said Nakashima of the Cancer Society. “To be honest, that attitude is still very strong.”