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Andy Rain for Asiaweek.
Nagai planned to enjoy retirement with his wife Etsuko, but a medical blunder ended her life.

Give Me Justice
Angry patients in Japan are fighting for greater accountability from doctors

A physician's lonely campaign against bad practices

The last time Nagai Hiroyuki saw his wife, she was smiling. She had undergone simple surgery that day for a rheumatic finger and seemed to have come out of it well. She waved him a cheerful goodbye and asked him to bring in a change of clothes the next day. When he returned, Nagai, 59, found his wife's bed empty. "I asked the head nurse what had happened," he says. "She said my wife had suddenly taken a turn for the worse after being given a drip. Her heart had reacted badly because of her high blood pressure." Lies. Nagai Etsuko, 58, was killed by a nurse who accidentally put antiseptic in the drip.

It was no isolated case. Across Japan, people are dying or being maimed because of sloppy medical practices and a cynical indifference to patients' wellbeing. Like society in general, the medical community is a rigid hierarchy. At the top are the doctors, demi-gods who feel under no obligation to explain anything to anyone. In the middle are the nurses, hardworking but reluctant to make a public fuss about chronic understaffing. And at the bottom are the patients, with few rights and so respectful of authority they are afraid to ask even the most basic questions about their treatment. It is an antiquated system where blunders are easily committed and just as easily covered up. Now, though, the media and activists are hoping to bring about a cure.

Until the late 1940s, people tended to take physicians on faith. But as health care grew into a service business - and education improved - the idea of patients delegating all authority to a doctor has become increasingly anachronistic. Where do the Japanese stand in relation to some patients' rights set out by the Hospital Authority in Hong Kong?

INFORMATION Right to a clear description of medical condition, likely outcome and proposed treatment.
• Terminally ill patients are usually not informed of their condition. The Japanese rationale: Most people can't handle the shock, and the bad news just shortens their lives

MEDICATION Right to know the names of drugs prescribed, their action and side-effects.
• Patients get little explanation. Drugs are often not labelled. Physicians rarely raise the possibility of side-effects of certain drugs

RECORDS Right to personal medical data.
• None. In Japan, medical records belong to the doctor or hospital

CHOICE Right to seek another doctor's views.
• Second opinions are discouraged. In fact, many physicians react angrily when asked to explain a treatment. The typical attitude: If you don't like it, switch hospital or doctor
The truth about what happened to Nagai's wife emerged eight months after her death in February 1999. The nurse involved approached Nagai and told him she had been very busy that shift. None of the four nurses on duty had been assigned to follow his wife's case, and a terrible mistake had happened. The disclosure confirmed what Nagai had suspected all along. "I knew they were hiding something," he says. "I saw a huge wound on my wife's arm where the drip had been. My sister-in-law is a nurse and she asked them repeatedly if the wrong medicine was given. They kept saying no."

Nagai, a Matsushita Electric executive, is close to retirement, and had been looking forward to spending more time with his wife. "We were planning to travel and do things together after years of busy work and child-raising." Now she is dead, and instead he is suing the Tokyo Metropolitan Hiroo Hospital, which has acknowledged the blunder. "I am angry and bitter about the way we were treated," he says. "I cannot forgive the fact that the medical authorities lied to me."

The medical authorities face increasing challenges from aggrieved patients. Government statistics show that 2,909 malpractice lawsuits were filed between 1995 and 1999, but that is just a fraction of the true total. This figure is broken down only in the case of government hospitals, where the number increased from 29 to 48 in that period. This growth suggests heightened public awareness that something can be done, but many people are still dying or suffering because of medical malpractice. Some examples:

• A baby had five fingers amputated after doctors at Tsukuba University Hospital in Ibaragi province prescribed 10 times more antibiotics than necessary. As a result, tissue on the infant's fingers died. At first, the hospital authorities insisted the accident resulted from a leaking intravenous drip. The truth was revealed a year later.

• A four-year-old boy died one day after he fell while eating cotton candy on a chopstick. A shard of the chopstick penetrated his throat and punctured his brain. Doctors at Kyorin University Hospital in Tokyo sent him home after treating the wound in his mouth with antibiotics.

Hospital staff are sometimes advised to go to extraordinary lengths to avoid taking responsibility for deaths or accidents. The Mainichi Shimbun newspaper recently revealed the existence of a manual drawn up by Tokyo officials. It advises staff at the city's 14 taxpayer-funded hospitals on how to behave in case of a dispute. For example, they should be careful not to apologize for anything. Giving personal views should be avoided. In meetings with complainants, they should not sit in a relaxed posture in case they drop their guard. And they should place themselves at a separate desk from the person they are talking to, so that he or she cannot peek at official papers. Following the newspaper's revelations, the Tokyo authorities said they would amend the manual, which critics have described as a how-to guide for cover-ups.

At the core of the crisis is the fact that many of Japan's doctors are out of touch and elitist. They pay only lip service to the notion of informed consent, in which a patient is fully advised of his or her condition and the advantages and drawbacks of any possible treatment. Patients are rarely told if they have a serious illness such as cancer, though their relatives may be informed. Questioning a doctor's opinion is rare, and the possibility of obtaining a second opinion is not mentioned. It is almost unheard of for doctors to make medical records available to their patients. Worse, some hospitals routinely destroy all records if things go wrong. Says Oshida Shigemi, professor of forensic medicine at Nihon University of Medicine: "By covering up this way, [hospitals] fail to share valuable lessons."

Frustrated patients are fighting to hold doctors and hospitals accountable for their mistakes. Some activists have launched websites to facilitate exchange between people with grievances. Others hold seminars to teach patients to ask basic questions — and sue doctors when they are negligent. Legal remedies, however, are often hampered because people do not have access to their medical records. The patients-rights group MEDIO receives about 100 complaints a month, but can refer only one in five to lawyers. Says its spokesperson, Ito Jun: "We can do nothing if there is a lack of medical evidence to support a patient's case." Formed three years ago, MEDIO answers telephone queries about medical mishaps and provides counseling and legal advice. The primary problems it handles involve botched births and secondary infections as a result of hospitalization. Other common complaints include doctors explaining only the plus side of treatment and denying patients information on the nature of a medical problem

Another group, Idea Four, counsels women suffering from breast cancer. It also checks hospitals for the quality of their treatment, organizes workshops, and publishes a newsletter on the latest research around the world. "Our aim is to tell women they can take care of themselves and not depend on male doctors telling them what to do," says director Aoki Eiko, 52. "The more they know, the more they can question their doctors and decide for themselves how they should proceed. Raising awareness is the best weapon we have to protect ourselves from harmful treatments." Aoki knows more than most about harmful treatments. When she contracted breast cancer two years ago, she was automatically advised to undergo a mastectomy, in which the whole breast is removed. She was devastated. She sought a second opinion, and was told about lumpectomy, in which just the cancerous lump is excised, and she chose to have that procedure.

Japan has no laws that explicitly make it an offense for hospitals and doctors not to recognize patients rights - particularly the right to informed consent. Grassroots organizations are trying to change that, but are meeting resistance. Lawyer Moriya Kazuma, a volunteer with an outfit called the Group to Support Patients' Rights Law, says they have the support of opposition legislators, but not of those from the ruling Liberal Democratic Party. His explanation: The party has close links to the medical establishment.

Medical practices have come under withering attack in a new book, Bad Treatment, Bad Doctors, by Keio University radiologist Kondo Makoto (see opposite page). He says doctors knowingly prescribe ineffective medicine, such as antibiotics for the common cold. Over-medication is routine, giving Japan the highest per-capita drug consumption in the world. Behind all this is greed and manipulation of the system by doctors, who receive fixed fees for the drugs they prescribe. While the cost of medicines may come down, reimbursement from the government stays the same. The difference forms the doctors' profit margin.

Greed shows in other ways too. To increase their income, many doctors arrange to see too many patients in a day. A government survey in September revealed that one in four waits more than an hour for a consultation, and then spends less than 10 minutes with the doctor. Another problem: Some physicians are medical dinosaurs. Unable to read English, they cannot keep up with advances in the West. Often it is a case of the higher ranked the doctor, the haughtier the attitude and the lower the knowledge level. Kondo says using mastectomy as the standard treatment for breast cancer in women, rather than the less traumatic lumpectomy, is an example of such backwardness.

Media revelations and the growing clamor from activist groups have forced the medical establishment to be more responsive. Apart from previously unheard-of public apologies to patients by doctors and nurses, the Health and Welfare Ministry has instructed doctors in state hospitals to release medical records if the patient asks for them. And a report released this month by the Japanese Nursing Association gives a measure of the dangers patients run. It reveals that the wrong medication was handed out nearly once a day on average at each of 11 hospitals surveyed. No deaths or permanent harm resulted, but the nurses conclude that nearly 40% of the cases could have been fatal. Overwork is clearly part of the problem. Medical workers' representatives say that Japanese nurses have nearly three times as many patients as their U.S. counterparts — a situation that patients-rights groups insist encourages mistakes.

Hospital representatives acknowledge a problem, but warn of the dangers of a witch-hunt. Ikezawa Yasuo of Japan Hospital Association says: "When there is a clear injury involved, the strictest of investigations must be carried out. But when the situation is not clear, it is important to examine both sides before pinning the blame on the doctor. After all, traffic accidents happen all the time despite drivers taking precautions, don't they?" True. But when they do, nobody denies they ever happened.

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