COLUMN ONE : Japan in Search of Its Heart : Without official recognition of brain-death, citizens head overseas for organs and transplants. Is it fair for the Japanese to receive but not to give?

Doctors have informed Kazuya Hashikawa, 30, of Fukuoka, a printer who is suffering from an incurable heart disease, that his only hope for recovery is a heart transplant.

And in today’s Japan, that amounts to a death sentence.

Although all other advanced industrial democracies recognize cessation of brain function as death and permit heart transplants from the brain-dead, Japan does not.

So, this month Hashikawa seized his only hope and left for London, where he will await a donor. A day later, a 10-year-old girl returned to Japan from Salt Lake City, where last July she became the ninth Japanese to receive a heart transplant overseas.

Hundreds of Japanese have traveled abroad for operations that are illegal here or to obtain organs that are in short supply.

Until the mid-1980s, when American suppliers balked, kidneys were regularly imported. Eyeball, cornea, serum and blood imports continue. Last July, in an operation that would have precipitated homicide charges against local doctors if the donor had been Japanese, a liver extracted from a brain-dead Belgian was flown to Tokyo for transplant to a Japanese woman. Rumors persist that Japanese are buying organs in India, Sri Lanka, the Philippines and China.

Still, Japan provides no reciprocity--raising fears among leaders that “transplant friction” will one day join “trade friction” in contributing to international anger over perceived unfairness by the Japanese.

Seven years ago, those fears spurred 21 members of Parliament to declare Japan a “backward nation in transplants” that lags “behind the times in mutual international assistance.” They set up a nonpartisan Life Ethics Research Federation that eventually forced the government to confront the issue.

Now, after two years of deliberations, an Ad Hoc Commission on Brain Death and Organ Transplants established through the federation’s efforts has urged the government to enact a law recognizing brain-death, “positively promote” organ transplants, including heart transplants, and establish international reciprocity.

Yet, a tortuous path lies ahead--”a step into the unknown for the Japanese concept of death,” in the words of Osamu Nishitani, assistant professor of Meiji Gakuin University. So sensitive is the issue that the Ad Hoc Commission conducted its deliberations behind closed doors.

Stacked up against modern medicine are ancient beliefs, rooted mainly in the Buddhist concept of reincarnation, that hold that the spirit will not separate from the body to go to heaven until the heart stops beating. A wound to the body or extraction of an organ, the belief goes, would anger the spirit. Transplants from the brain-dead, whose hearts still beat with the aid of respirators, would deprive a human soul of reincarnation.

To make sure that the spirit has separated from the body, as well as to guarantee that the spirit is not prevented from returning to life, Japanese law forbids cremation or burial for 24 hours after death by heart stoppage.

Abhorrence of donating a corpse for medical research is so deeply rooted in tradition that the word kentai (donate body) did not appear in dictionaries until 1983, the year in which a law setting up procedures for the donation of bodies was first adopted.

“Japanese believe that the body becomes a god,” the spirit of which comes back at O-Bon (All Souls Festival), said former Foreign Minister Taro Nakayama, a doctor by training who leads the parliamentary federation pushing for a new law.

Nakayama predicted in an interview that at least two more years will be needed to reach a conclusion--a year for the government to draw up a law and another year for parliamentary debate. He refused to predict the outcome, except to say that “those who now oppose brain-death will oppose it to the end.”

Takeshi Umehara, chairman of the International Center of Japanese Studies in Kyoto and a dissenting member of the Ad Hoc Commission, predicted that any attempt to legislate brain-death would fail. He estimated that at least a third of the ruling Liberal Democratic Party members of Parliament, as well as much of the opposition, oppose recognition of brain-death.

Any bill will have to be limited to fixing “strict standards” under which transplants are performed, Umehara said. Two years, he added, may not be enough to enact appropriate legislation.

An opinion poll conducted by the commission last October showed that only 45% of the Japanese public supported recognizing brain-death.

Meanwhile, Hashikawa, the printer, has been told that he has only two years to live if he fails to receive a heart transplant.

“A national consensus ought not to be a matter of whether all of the people recognize brain-death or not,” he said in a TV interview before he left for London. “I want the freedom of choice recognized. Under these conditions in Japan, for patients like me who want to receive an organ transplant and continue to live, that right is not recognized.”

Hashikawa’s wife waged a successful campaign to raise the $240,000 needed for her husband’s heart transplant in London.

Setsuko Kinoshita, 32, spearheaded one of the first such fund-raising campaigns. Her son Yuya, now 5, was born with a congenital liver defect. Shortly before his first birthday, he was given only three months to live without a transplant.

Angered by examples of rich Japanese who went abroad for operations that her office-worker husband, Shigenobu, 36, could not afford, Kinoshita secured the help of newspapers in carrying out a nationwide campaign that raised 70 million yen--$560,000 at the current exchange rate--to pay for a 1987 liver transplant from a brain-dead patient in Brisbane, Australia. (The surgery cost $100,000, and the excess money was returned.)

“If a donor, a recipient, and the doctor in the middle agree, people on the outside have no business interfering,” Kinoshita said.

Yuya is one of 54 Japanese children who have found new life from liver transplants abroad. Today, just like other children, he is going to kindergarten. He is so healthy, Kinoshita said, “we usually forget that he had a transplant.”

She remembers “having trouble accepting the news joyfully” when the Australian doctor told her that the operation was a success.

“I thought of the family whose child died to provide the organ. But the doctor told me that the other child ‘didn’t die for your son. The best reward for those parents would be for you to raise your son to be healthy and happy,’ ” she recalled.

While Yuya was recovering in the Brisbane hospital, an Australian child in the same room died. “The mother said, ‘Raise your child to include the happiness of mine.’ I can never forget those words. No one ever said anything like that to me in Japan,” she said. On the contrary, she found herself condemned in anonymous letters and phone calls by those who asked why she took her son to a foreign country for expensive surgery while other average Japanese parents are forced to watch their children die.

Legally authorized transplants of kidneys and corneas are currently being conducted in Japan. Liver transplants are also performed. But except for partial liver transplants from living donors--a practice that the Japan Transplant Society has criticized because of its high risk--all of the organs come from patients declared dead on the basis of heart stoppage, cessation of breathing and enlargement of the pupils. Last July’s liver transplant from a Belgian was the first in Japan from a brain-dead donor.

Heart transplants, which are possible only from the brain-dead, are implicitly banned.

The Ad Hoc Commission could not agree on what a law recognizing brain-death should contain. Indeed, its final report added to the confusion.

Umehara and three others rejected brain-death as the final determinant but approved transplants from brain-dead patients. The majority--16 of the 20 members--insisted that cessation of brain functions be the standard for determining death but approved continuing use of respirators for the brain-dead if relatives wished.

In effect, the minority assented to heart transplants from patients it defined as alive, while the majority approved continuing treatment of those it defined as dead.

“We cannot recognize the brain-dead as dead because the person is breathing, although connected to a respirator, and the body is warm,” the dissenters said. “There have been cases of the brain-dead continuing in that condition for more than 200 days. Moreover, brain-dead women have given birth in both the United States and Japan. . . . Can a dead person give birth?”

Yet Umehara, the dissenters’ leader, acknowledged that “brain-death is extremely close to death” and said that if the will of a patient “to give up the tiny fraction of life that remains to donate an organ to save another life is confirmed, that act should be permitted.”

Such an act, he added, conforms to both the Buddhist concept of achieving sainthood through good deeds and the Christian concept of love for humankind.

The majority, for its part, recognized the emotional difficulty that many families would face in removing a respirator from a loved one whose heart is still beating and who is still breathing.

The raging debate has exposed a startling degree of distrust of Japan’s secretive medical profession, in which doctors are rarely questioned and seldom offer explanations.

The Ad Hoc Commission noted that in 1968 a doctor in Sapporo who dared to test the limits of Japanese law by carrying out the nation’s only heart transplant tarnished the public image of transplants so severely that “doubts, uneasiness and suspicions” remain even today. Prosecutors investigated the doctor--who extracted the heart of a patient whom he declared brain-dead and then implanted it in another patient, who died 83 days later--on suspicion of homicide. But, citing lack of evidence, they filed no charges.

Other doctors charged that the heart was extracted before the donor was brain-dead and contended that there was a possibility the recipient didn’t need a heart transplant.

Condemning “authoritarian-like paternalism in the medical world,” the commission said doctors must “allow patients to participate” in “informed consent” decision-making.

Kinoshita recalled that Yuya’s doctor never mentioned the possibility of obtaining a liver transplant overseas. And she never sought a second opinion. Patients in Japan are expected to treat doctors as a “god with whose services they have been blessed,” she said.

Doctors, Kinoshita complained, fail to reveal the condition of a dying patient until “suddenly one day, you are told (the patient) is on the verge of death.” Unprepared for the shock, family members are incapable of thinking about such issues as brain-death or approving removal of organs that might help save another person’s life, she said.

What Japan needs most urgently, Dr. Makoto Kondo, a lecturer at the Keio University medical school, said in a TV debate, is a law protecting patients’ rights against doctors. Already, he charged, the Japanese medical world has won an infamous reputation for its “three excesses--excessive drugs, excessive testing and excessive operations.” Now, he charged, fear is rising that transplants will add a fourth excess--excessive transplants.

The commission itself warned against “hasty and mistaken judgments” on brain-death and demanded that at least two doctors, excluding transplant surgeons, join in determining brain-death.

So far, medical societies have certified 13 hospitals to ultimately perform heart transplants and more than 120 to carry out kidney transplants. About 40 others have declared themselves prepared to perform liver transplants. But many critics charge that Japan’s hospitals fall appallingly short of standards needed for transplants. Even proponents acknowledge serious faults.

Dr. Futaya Sakamoto, chairman of the Heart Disease Society of Japan, complained of frightful hygienic conditions. Some hospitals, he said, “flout common sense” by using the same elevators that transport patients from operating rooms to remove garbage.

“Present conditions are really awful compared with the United States and Europe. They must be corrected,” Dr. Taira Mori, chairman of the Japan Heart Transplant Research Assn., has acknowledged.

Fears also are widespread that Japan would suffer an even greater shortage of donors than other countries. While Americans who donate organs often do not learn the identity of the recipient, opinion polls have shown that Japanese are most willing to give organs to friends or relatives. Abstract “goodwill” donations to strangers are likely to be limited in Japan, some scholars of Japanese ethics believe.

What’s more, families often overrule a patient’s wish to donate organs to anyone who might need them.

More than 100,000 kidney patients in Japan are now seeking transplants, the Ad Hoc Commission estimated. But Japanese donors are only a fraction of those in the United States and Europe. Although Japan established a kidney bank in 1977 that has registered 253,000 potential donors, an average of only 100 people on the bank’s list actually donate organs each year.

“Our kidney bank is of little use,” said Naoki Iguchi of the Health and Welfare Ministry’s health policy division.

According to the commission’s poll, a surprising 68% of the Japanese public would be willing to donate organs if pronounced brain-dead. “But I suspect that this is a case in which the tatemae (principle) is different than the honne (reality),” Iguchi said.

That’s not the case with the Kinoshitas. Before Yuya was born, his mother said she and her husband never thought about transplants. Now both carry donor cards.