Tokyo Journal; When Doctor Won't Tell Cancer Patient the Truth

When Emperor Hirohito began to vomit inexplicably and then lost weight and energy, his doctors never told him what just about everyone else in Japan eventually came to know: He was dying of cancer.

Hirohito may have been a virtual god in the early part of his reign, but he was also a patient -- and doctors in Japan mostly lie to cancer patients, even former divinities. "I don't regret that I didn't tell him about his cancer," Akira Takagi, the Emperor's chief doctor, said at the time of Hirohito's death in 1989.

But these days, a mild-mannered radiologist is crusading for the principle of telling patients the truth, even when that means breaking their hearts.

The radiologist, Dr. Makoto Kondo, returned from a year in the United States determined to tell patients bad news, and his campaign for radical change -- for pulling doctors down a notch and injecting democracy into the Japanese medical system -- is provoking such outrage among fellow physicians that they refuse to refer patients to him. He is scarcely more polite about them.

"The present system is like the medical experiments on prisoners during World War II," Dr. Kondo said as he took a break in his cluttered office, surrounded by books in Japanese and English. "It's a very awful thing. It's a shame."

Dr. Kondo's latest book, "Side Effects of Anti-Cancer Drugs," has hit several best-seller lists since it arrived in bookstores late last year. Patients flock to his practice, and he has become about as much of a celebrity as a full-time radiologist can.

Surveys suggest that only about a quarter of Japanese doctors always tell patients when they have cancer. People are especially unlikely to be told if they have inoperable cancers with a poor prognosis; patients with stomach cancer may be told they have nothing more than an ulcer.

A 50-year-old woman named Kazuko Makino was told that she had gallstones, even though her doctor suspected gallbladder cancer. The doctor recommended surgery, but Mrs. Makino was a nurse and decided that she did not need an operation to remove her "gallstones."

The cancer spread, and Mrs. Makino died. Her family sued the hospital for malpractice, but a court rejected the claim, ruling in a landmark case in 1989 that doctors need not tell cancer patients their true condition.

Japanese doctors do not disclose bad news primarily because of fear that it would upset the patient and harm the prognosis. Neither side can cite statistics about whether patients live longer if they have been lied to, but even some of those who favor honesty worry about the psychological and physiological consequences if a doctor is seen as pronouncing a death sentence.

Dr. Kondo acknowledges that he used to go along with this.

"I didn't tell patients the truth," he said. "I lied to them. But it was a very bad experience."

Dr. Kondo was also greatly affected by a year he spent in the United States, in 1979. "I realized that if a doctor could tell the truth to patients in the U.S.," he said, "then I could do the same to patients in Japan."

The best gauge of what Dr. Kondo is up against is the popularity of an anti-cancer drug called Krestin. Its manufacturer says Krestin sales amount to about $100 million a year.

It is said to be popular because doctors can prescribe it without telling patients that they have cancer. Krestin is taken orally, and does not have debilitating side effects that might give patients clues to the diagnosis.

But critics assert that Krestin does not have much in the way of good effects either. The Japanese Hospital Association has condemned the drug, saying doctors wasted $10 billion on it and another anti-cancer drug.

Sankyo Pharmaceuticals, which sells Krestin, takes a different view. "We consider it effective, in that the Ministry of Health and Welfare conducted a review and permitted its use," said a company spokesman.

Dr. Masanori Fukushima, a cancer specialist who is critical of Krestin, said, "Things happen in this country which are ridiculous." Still, Dr. Fukushima and everyone else interviewed said the number of doctors who tell the truth to patients is greater than it was five years ago.

"It's a process of democracy developing in the health system," Dr. Fukushima said. "We're about 20 or 30 years behind the United States."

The authoritarian, paternalistic elements in the current Japanese health care system are evident even in a checkup. Japanese doctors are less likely than American ones to explain what they are doing and why, or to indicate what they have found.

Moreover, Japanese prescription bottles do not state the medicine being taken. Instead, there are symbols that a patient can decipher by consulting a technical reference that has been a huge best seller in Japan.

"The relationship between the physician and the patient is like that between God and the people," said Dr. Masao Miyamoto, a psychiatrist who earned his medical degree in Japan and later taught and practiced in the United States. "The problem then is that in Japan a patient can't get a second opinion. It becomes an insult."

Underlying the dispute about telling patients the truth is a conflict among lay people about what the policy should be. A poll last year found that 64 percent of those interviewed would want to be told the truth if they had cancer. But when asked their opinion if the patient was another family member, 58 percent said they would not want the doctor to tell the truth to their loved ones.

"A majority of family members are against telling the truth to the patient, at least initially," said Dr. Mitsuru Sasako, a professor of surgery at the National Cancer Center Hospital in Tokyo. Dr. Sasako said that he normally tells patients the truth anyway, but that it must be done with special care in Japan because there are none of the support organizations that exist in America to counsel terminally ill patients.

Dr. Sasako argues that Dr. Kondo's advice to the public was initially useful in shaking up the medical establishment. But like most doctors, he said Dr. Kondo's pronouncements are now too sweeping and opinionated and leave patients skeptical and uncertain about their options.

"If he makes people unable to believe doctors, that can make patients unhappy," he said. "If Dr. Kondo makes too many accusations, that causes confusion among patients."

Source:
By Nicholas D. Kristof   Feb. 25, 1995
A version of this article appears in print on Feb. 25, 1995, Section 1, Page 4 of the National edition with the headline: Tokyo Journal; When Doctor Won't Tell Cancer Patient the Truth.