TOKYO - Like the cardiologist who has a heart attack or the
radiologist who discovers a tumor, Hideaki Nakajima, an orthopedic
surgeon, felt a pain in his hip one day.
That marked the beginning of Nakajima's transformation - from
doctor to patient and, finally, to outspoken critic of Japan's
medical system.
For years, Nakajima had been a typical doctor, examining a
parade of patients each day, his practice at a university hospital
a textbook example of what the Japanese call ``three-minute
medicine,'' which refers to the average length of time a patient
spends with a doctor.
Nakajima had no time to explain his procedures or his diagnoses
to patients, but that didn't matter. In Japan, patients usually
aren't even told what's wrong with them. The medical system is
paternalistic, with doctors as the all-knowing fathers, leaving the
patient with few rights - no access to medical records, little
chance for second opinions. Drugs are often dispensed in little
white boxes so patients don't know what they're taking. They're not
even likely to be told if they have a terminal illness.
``The idea is that patients don't need to know, and that it's
not good to give them all the facts. It will just confuse them and
won't make sense,'' said Rihito Kimura, a leading bioethicist at
Waseda University in Tokyo.
That is beginning to change. Recently, small patients advocacy
groups have sprung up and are questioning the system. They want a
patient's bill of rights, similar to one drawn up by U.S. hospitals
in the early 1970s that gave patients a right to ``informed
consent'' before they are subjected to medical procedures or
treatments, a privilege that still doesn't exist in Japan.
Some Japanese are even doing something normally frowned upon in
this nonlitigious society. They are suing.
When Nakajima became a patient, his world view turned upside
down.
``When I was working, everything seemed fine,'' he said. ``Only
now can I see that doctors don't really take care of patients.''
His metamorphosis began when a fellow orthopedist operated on
Nakajima's hip to remove loose cartilage. Afterward, Nakajima
thought something didn't feel quite right. He questioned the
doctor. Everything was fine, he was assured.
Then Nakajima broke his hip, was hospitalized three times and
had to take a year's leave of absence from work. He began to
suspect the break was caused by something that had gone wrong in
the surgery. He increasingly pressed his surgeon and the hospital
where they both worked for information, but got nothing except
growing hostility.
He finally discovered, he said, that the doctor had made a
blunder during surgery by pulling his hip joint out of place. But
it wasn't the mistake that outraged Nakajima. It was the cover-up
by his fellow doctors and their unwillingness to explain his own
condition to him. No one, all the way up to the head of the
department where Nakajima worked, would admit that anything had
gone wrong.
``Even when I confronted the doctor, he still just tried to hide
it. He wouldn't tell me the truth,'' Nakajima said.
The Japanese public is growing worried about medical mistakes.
In recent months, newspapers have carried almost daily accounts of
hospitals and doctors being forced to come forward and admit
blunders: Lung surgery performed on a man with a heart ailment; a
woman implanted with someone else's fertilized egg; a nurse who
inadvertently put disinfectant in an intravenous drip.
Some argue that such mistakes are more likely in Japan because
of the veil of secrecy that protects hospitals from regular public
scrutiny. But many analysts think the apparent rash of deadly
blunders is not so abnormal; it's just that hospitals are being
forced to admit them by increasingly vigilant patients, the media
and other doctors.
``Ten years ago, it would have been possible to hide these
things, because colleagues would automatically agree to secrecy,
whereas now they don't,'' said Ian Neary, a British academic who
has extensively studied the Japanese medical system.
Indeed, Japan is not the only country struggling with ways to
make the medical system more publicly accountable. A landmark study
last December by the National Institutes of Health estimated that
doctors' mistakes kill 44,000 to 98,000 Americans every year, more
than from auto accidents, breast cancer or AIDS.
No similar figures are available for medical errors in Japan,
but one thing is certain: Japanese patients are far less likely to
sue over these mistakes.
Compared with the estimated half-million medical malpractice
lawsuits pending in the United States, the numbers in Japan are
minuscule, but they are growing. Today, there about 3,000 cases
pending, double a decade ago. Analysts estimate there is also an
increasing number of out-of-court settlements, but figures are hard
to come by, in part because the doctors' powerful lobbying group,
the Japan Medical Association, refuses to publicly release
statistics.
Lawsuits and patient anger are increasingly directed, not at the
medical blunders themselves, but at the lack of information. Kana
Okaniwa's father was given an experimental medicine by his doctor
and died eight weeks later. She contends the medicine killed him
and that he was not informed of the potential side effects by the
doctor.
``The doctor never even told him what the medicine was for,''
Okaniwa said.
Last November, she filed a lawsuit, which is much more difficult
in Japan than in the United States. There are only a few dozen
lawyers who pursue malpractice suits, and just five in the entire
country who handle them full time.
Finding a doctor to testify on the plaintiff's behalf is equally
difficult. Okinawa wound up flying to Philadelphia to find an
American doctor who would offer medical testimony for her case.
``The medical profession is much more closed than in the U.S.,''
said Kimura, who also has taught at Georgetown University for two
decades.
Until the late 1960s, the U.S. medical establishment operated in
a similar fashion. Doctors routinely kept information and records
from patients, sometimes subjecting them to experimental treatments
without their knowledge. Many also were reluctant to tell a patient
of a terminal illness.
Though less common than before, it still remains the norm in
Japan for doctors not to tell patients they are dying or, in
particular, have cancer. Medical observers say cancer patients are
given the treatments they need, like chemotherapy or radiation, but
are told that their tumors are benign.
``Doctors don't tell patients about their diseases when they
judge that the patient might get depressed, or if it wouldn't help
matters. They do it to protect the patient,'' said Akira Koizumi,
vice president of the doctors' lobby.
Withholding such information, however, also makes it impossible
for Japanese cancer patients to take an active role in their
treatment, as American cancer patients commonly do, researching
their disease and asking questions about the best options.
In Japan, the image of the paternalistic, beneficent doctor
derives from strong Confucian values imported from China. In Japan,
the doctor, who is always addressed by the honorific ``sensei,''
which means teacher, has long been viewed as a wise and
intellectual person.
Also, in Japan, Kimura said, the lack of communication between
doctor and patient is in keeping with the cultural dislike for
direct speech. It's considered much more respectful to talk about
something uncomfortable, such as an illness, either indirectly, or
not at all.
There are small signs that the system is starting to change. The
Ministry of Health and Welfare is adding to the national medical
exam a section on bioethics and patient rights. That, in turn, will
force medical schools to start teaching the subjects.
Still, the doctors' lobbying group, which has close ties to the
government, is trying to preserve the status quo. Last year, the
group managed to squash plans to give patients access to their
medical records. Japanese patients have little reason to complain,
the group has long argued, because they are fortunate enough,
thanks to Japan's national health-care system, to have access to
cheap health care.
In general, in fact, the Japanese are among the healthiest
people in the world, with a life expectancy of 74.5 years, 4 1/4
years longer than Americans.
Orthopedic surgeon Nakajima has found out just how powerful the
medical establishment can be - and how unwilling it is to tolerate
dissent within its own ranks. His persistent questioning of his
treatment was unwelcome, he said. When he tried to return to work
at his hospital after his yearlong medical leave, he was forced to
resign.
Now he's filed a malpractice suit, and has been ostracized by
the medical community, leaving him little hope of finding a job at
any hospital. Instead, he spends his time advising other patients
on their legal rights.
``I stand as a warning to other doctors,'' Nakajima said, ``to
say if you stand out or stand up, you will be treated like this.''
