The Fatal Flaw of Arrogance

TAKASAKI, Japan —  As they replay the painful end of their daughter’s life, Toshiaki and Mutsumi Hirayanagi remember the conversation they had hours before Akika was admitted to Tokyo Women’s Medical University Hospital for routine heart surgery.

“What’s death like?” the 12-year-old had asked.

A bit shocked, Mutsumi told her that death meant you faded away. Toshiaki interrupted: “It’s nothing to worry about. Hospital techniques are very advanced these days, and there’s little chance of dying during an operation.”

Today, the Hirayanagis blame the surgeons, the hospital, the Health Ministry and the system. Most of all, they blame themselves, as they second-guess their every decision.

They’ve endured the unspeakable pain of losing a child, the added injury of an alleged hospital cover-up and the loss of privacy that has followed their high-profile battle against Japan’s entrenched medical establishment.

All their pent-up guilt, anger and frustration can’t change one fact, however: Their daughter entered Japan’s foremost cardiac hospital vibrant and very much alive and was dead a few days later.

Akika’s life went largely unnoticed by most Japanese. But her death 21 months ago has had a huge impact on the medical care debate. Her name has become a rallying cry for critics troubled by what they see as deeply rooted tolerance of medical malpractice here. Among the reasons they cite are Japan’s nonconfrontational culture, weak consumer movement and lack of checks and balances.

The case has hit a nerve with the Japanese public in part because it involved a young, innocent victim and because the alleged cover-up seemed so blatant.

Two of Akika’s attending physicians were arrested and jailed for malpractice, an extreme rarity in Japan. The government has promised reforms. And Tokyo Women’s has had its funding cut.

To be sure, the vast majority of doctors in Japan are conscientious and hard-working, and many aspects of Japan’s health system put the U.S. and other Western countries to shame. Japan, with its near-universal insurance coverage, generally healthy diet and broad-based middle class, enjoys low infant mortality rates, high life expectancy and good quality of life.

But too often, health care is organized for the convenience of doctors rather than the safety of patients, critics say. Japanese doctors receive no mandatory hands-on training, go from books to treating patients overnight and are rarely questioned.

American physicians, in comparison, have become increasingly open about treatment options in recent years, as patients eagerly seek second opinions. Patients have ready access to courts and local regulators when problems arise. And with rare exception, U.S. doctors immune from criticism have gone the way of the house call.

Here in recent years, a spate of alleged malpractice cases that reads like a horror show have made headlines.

Lung and heart patients mixed up at Yokohama City University Hospital have the wrong organs removed. A rheumatism patient at Hiroo General Hospital dies after being injected with disinfectant. A plastic surgeon leaves part of a surgical saw in a patient’s nose, then tells her it’s meant to improve stability. And 10,000 patients receive inaccurate blood diagnostic work at Tokyo Rinkai Hospital after machines are incorrectly set over a six-month period.

Other cases involve apparent euthanasia done without the family’s consent. There are reports of hospitals performing experimental operations on terminal patients -- again without the family’s permission -- for practice. At least 43 hospitals admit allowing dentists to do doctors’ work, including 25 that let them operate.

No comprehensive malpractice figures are available. But in the first official malpractice survey, the Health, Labor and Welfare Ministry revealed in April that 15,000 medical errors occurred in Japan’s top 82 hospitals over a two-year period. Many believe that the numbers are much higher.

Japanese doctors go directly from high school into a six-year medical program built around rote memorization, which is a big part of the problem, critics say. Most professors view teaching as a distraction because promotions are tied to research. Clinical training is not part of the curriculum, and there are no mandatory internship or residency programs. In fact, it’s illegal to be involved in patient care before you’re licensed.

After taking the exam, however, the magnets flip. Newly minted doctors are fully qualified to practice medicine, even, in theory, to perform brain surgery after doing little more than reading about it.

“It’s like racing a Formula One car as soon as you get your driver’s license,” said Tsutomu Wada, author of a book on medical malpractice. “From the patient’s perspective, it’s a disaster.”

Young doctors coming to Osaka’s Yao General Hospital are surprised to hear sounds when they first put a stethoscope to the patient’s chest, says Dr. Isao Mori, the institution’s director and head of a group working to raise malpractice awareness. Asked whether they hear a heart murmur, some respond: “What’s a murmur?”

There’s little emphasis on diagnostic skills because doctors see up to 100 patients a day. The “three-hour wait and three-minute visit” patient system is driven by an insurance system that compensates doctors little for visits and lots for prescribing drugs. And there’s enormous sectionalism, with hospitals and even departments loath to share information.

“It’s tribal,” says Dr. Jiro Nakano, an advisor to Osaka’s Hokuetsu General Hospital.

American doctors must take courses before getting their license renewed, which generally occurs every three years depending on the state. Japanese, once licensed, are never required to brush up on skills or renew their qualifications. As Japan’s population ages rapidly, it’s not unusual to find 80-year-old doctors, their hands shaking and nearly blind, still hard at work.

Perhaps most dangerous, and most difficult to quantify, is arrogance. The words of Japanese doctors tend to be sacred and immune from review by nurses, fellow doctors or administrators. Many view a patient’s questions as an affront.

Japan’s legal system has no discovery process, making it difficult for ordinary citizens to pry information out of a medical system that isn’t eager to reveal its bloody linens.

The nation has few lawyers and even fewer devoted to malpractice. Doctors rarely testify and justice is often slow, forcing most malpractice victims to give up or settle. Although the number of malpractice cases is rising sharply -- Tokyo and Osaka recently started special court sections to handle the overload -- only 805 were filed last year, far fewer than in many U.S. states. California, for instance, had at least 1,215 malpractice complaints settled in the fiscal year ending July 2002.

Add a level of professional courtesy between doctors and judges, critics say, and you see why malpractice suits against doctors take four times longer to conclude and are won only 40% of the time, half as often as other types of cases.

Although charts are legal documents in the U.S., they’re considered a doctor’s private notes in Japan, with no penalties for altering records after something goes wrong and no patient access without the doctor’s approval.

“Altering records happens every day in Japan,” said Shunsuke Furuse, a malpractice attorney.

Hokuto Hoshi, executive board member with the Japan Medical Assn., admits that arrogance, insularity, lax standards and excess memorization are problems, but he says that a new medical internship program after 2004 should help.

“We’re not trying to protect bad hospitals, but outsiders can’t accurately judge things like death rates,” he said, adding that patients need to trust their doctors more. “We support voluntary efforts, not those imposed from outside.”

For Akika’s family, the truth might have remained hidden if Toshiaki hadn’t been a dentist with training in anesthesia. Their second daughter was born with a hole between her heart’s two chambers. When she was 2, doctors told the family that her condition wasn’t life-threatening but recommended that she eventually have an operation.

Akika was small, but her parents worked hard to treat her just like her two sisters. Cautious teachers wouldn’t allow her to swim or exercise, but the Hirayanagis enrolled her in a swimming class after school. She enjoyed reading and developed a strong interest in the natural sciences, stargazing and collecting shells.

By sixth grade, the growing height and weight gap between Akika and her classmates was affecting her self-esteem. So in December 2000, her parents approached Tokyo Women’s, hoping a heart operation might prompt a growth spurt. The Hirayanagis also approached a competing hospital but were told that the procedure was routine, Tokyo Women’s was highly qualified and a second opinion wasn’t necessary.

Two days before the March 2 operation, Tokyo Women’s told them that a spot had suddenly opened up and advised them to take it. Concerned by the assembly-line atmosphere, they nevertheless pulled together a few things for Akika -- some comic books and audiotapes -- and asked to meet the doctor.

The hospital grudgingly agreed, and Toshiaki and Mutsumi were told to come at 9 a.m. to meet the lead surgeon, Kazuhiro Seo. They waited all day before finally seeing him that evening. “It was like we were waiting for the high and mighty doctor to grant us an audience,” Mutsumi said.

Accusatory Tone

As soon as Seo walked in, he fired a question at them in an accusatory tone, throwing a pen onto the table for emphasis: “Do you know the structure of the heart?”

Toshiaki sputtered something about blood, but says Seo’s underlying message was clear: Don’t bother me unless you want to do the operation yourself. “There was such arrogance,” Toshiaki said.

The jarring incident made the Hirayanagis so uncomfortable that they considered calling off the operation. But they knew that they would be branded troublemakers at hospitals all over the country.

“We’d be notorious,” Toshiaki said. “We’d be on a black list.”

They worried about getting Seo even more upset, damaging his career. They worried about what Akika’s grandparents would think. With just 15 minutes to decide, they signed the consent form. “It’s a decision I’ll never forgive myself for,” Toshiaki said.

Now after 8 p.m., they raced upstairs, but Akika was heavily sedated. They never got the chance to say goodbye.

The operation early the following morning was supposed to last until 2 p.m. But it was after 5:30 before Akika was wheeled out. Her face was heavily swollen, her skin gray.

There was something else: Seo’s attitude. He was talking a lot. “When you’re trying to hide something, you tend to speak too much,” Toshiaki said. “And the other doctors looked grave.”

The hospital limited their visits to 20 minutes a day, but it was obvious that Akika was deteriorating rapidly. Three days after the surgery, Tokyo Women’s notified her parents that Akika was dead and said the cause was “heart failure.”

Shortly after the funeral, an anonymous letter in a hospital envelope suggested that the operation had been anything but routine. It spoke of problems with the heart-lung machine and claimed that Seo had tried to cover them up.

For the next two months, the couple petitioned the hospital for answers only to be met with silence or excuses. Finally, the family sought a court order for the medical records, and in May, formally requested a hospital investigation.

Seo and two senior hospital administrators met them in October at a hotel near their Takasaki house. Akika hadn’t died of heart failure and they had altered the records, they admitted. The blood circulation machine had malfunctioned for 20 to 40 minutes, resulting in massive brain damage.

Gradually over the next several months, more details leaked out. Two hospital departments had been in a turf battle -- the children’s and adult coronary departments -- and sought to control the case. By some accounts, Kazuki Sato, the doctor overseeing the heart-lung machine, set the machine at twice its recommended level, which blocked circulation and caused blood to seep from Akika’s nose, leading to panic once the problem was discovered.

After the operation, lead surgeon Seo allegedly ordered hospital staff, including the head nurse and a technician, to alter the records. The 6- to 7-millimeter dilation of Akika’s pupils was changed to a 4 to mask her brain damage.

Cover-Up Reported

According to a report issued a few months ago by an independent investigative committee appointed by the hospital, the head nurse notified surgery supervisor Yasuharu Imai of the tampered chart, but Imai subsequently told the hospital director that nothing had been altered. “The nature of the entire hospital is to cover up scandals,” the report said, even as the document itself avoided naming many of those involved.

Efforts to reach Seo and his subordinate Sato in jail were unsuccessful. Seo’s lawyer declined to comment; Sato’s could not be reached.

Toshiaki says he has visited Seo in jail and thinks that the two doctors are scapegoats for the hospital and the broader system. He was willing, he says, to accept an apology, an out-of-court financial settlement and some evidence that the doctors and hospital have taken the issue to heart. But the police are prosecuting Sato on charges of professional negligence leading to death and Seo on destruction of evidence.

The Hirayanagis say they believe that the police department’s zeal is driven by a need to look effective in the face of so much media attention. It will probably be several years before the criminal case is concluded.

“We still feel like Akika’s alive. It all happened so quickly, and we’re still having trouble believing it,” Toshiaki said. “I truly hope this whole thing will do something to change the system.”

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Rie Sasaki in The Times’ Tokyo Bureau contributed to this report.