On Dec. 16, 2005, a pediatrician told Akemi Nakamura that her 2-year-old daughter was brain dead.
“When I heard the words coming out of the doctor’s mouth, I felt nothing but despair,” said Nakamura, 46, who has three other children.
Her youngest child, Yuri, had been a perfectly healthy infant until she had suffered a seizure three days previously. The ambulance crew told the Nakamuras not to worry, believing it to be a febrile seizure young children sometimes suffer.
But the girl, who was taken to one hospital and then transferred to another one, never regained consciousness. Nakamura recalled that when she was finally able to see her daughter, there were many tubes connected to her.
The doctor told the family that all possible examinations had been carried out, including a CT scan, an MRI, brain circulation and brain wave tests, and the diagnosis was their daughter’s entire brain, including the stem, was dead, explained Namamura. She was told there was virtually no chance of her daughter recovering.
Nakamura initially thought her daughter’s life was going to end within a few days, but with the help of a ventilator, the girl’s heart kept beating for 21 months, until she reached the age of 4.
“The time we had was so precious. . . . She was alive. Her body was warm and her cheeks were pink. . . . She grew over 10 cm taller,” Nakamura said. “When her body finally turned cold in my own hands, I understood she had passed away.”
Nakamura is one of the many who oppose the revised Organ Transplant Law, which recognizes brain death as actual death. The law also scrapped the age minimum for being an organ donor, paving the way for organs from brain-dead children, providing their next of kin consent.
But defining brain death as actual death remains controversial in Japan. While most medical experts recognize the state as actual death, opposition groups argue that the definition of death only applies when the heart stops. This does not include brain death, even if patients are dependent on a ventilator, they argue.
Yoshihiko Komatsu, professor of bioethics at Tokyo University of Marine Science and Technology, said death cannot be purely defined in medical terms.
Komatsu said that even if brain death constitutes actual death in a medical sense, it may not in terms of society and culture.
“That means social recognition, or not, of brain death as actual death plays a huge (defining) role,” he said. “Even if a person is medically confirmed dead, it does not instantly equal actual death.”
Kimiko Kawami, 62, director of Zoki Ishokuho Wo Toinaosu Shimin Network (Citizen’s Network Questioning The Organ Transplant Law), agrees with Komatsu, saying it’s a Japanese custom to recognize death only when a person’s heart stops and the body turns cold.
In the case of an organ donation from a brain-dead patient, however, “the person is taken away (to surgery) while the body is warm and the heart is beating, but comes back cold and dead,” Kawami said, stressing that in the eyes of many Japanese, life continues as long as the heart beats.
“Recipients’ lives may be prolonged by removing organs from the living. But it’s nothing but taking people’s lives in the name of medicine,” said Komatsu, who also heads The Society of Bioethics, comprised of 71 academics opposed to the revised Organ Transplant Law.
In addition to the already contentious issues surrounding brain death, the presence of “choki noshi,” or chronic brain death, which can occur in children such as Nakamura’s daughter, complicates the matter.
According to the Japan Organ Transplant Network, brain-dead people succumb within a few days even if they are put on a ventilator. But in the event of children, there have been cases reported of their hearts continuing to beat for months or even years after they becoming brain dead.
However, some medical experts say many such claims are due to inexperienced doctors making misdiagnoses.
Ikuya Ueta, chief of the pediatric intensive care unit at Shizuoka Children’s Hospital, said that while he has talked with people who claimed their children had chronic brain death, and read papers on such instances, “in many cases, proper diagnoses were not made,” he said.
The problem is the lack of experienced doctors who can make a precise diagnosis and give parents a detailed explanation regarding their children’s condition, including how it will develop, Ueta said.
“Even if they keep receiving (intensive care), there is no case reported of children who began walking again after a few years,” Ueta said. “It means they die after living as intensive care patients connected to a ventilator for years,” he said.
It’s a doctor’s duty to fully explain the situation to a parent and together decide what’s best for the child, including the option of organ donation, Ueta noted, adding that parents have choices.
Under the current law, brain death only refers to those who go through a series of examinations to ensure no mistakes occur. The full examination is only conducted on patients who have not declared themselves opposed to organ donation and whose next of kin have given their consent.
If parents do not want to donate their children’s organs, no brain-death confirmation tests will be performed that would result in an official declaration, experts said.
Komatsu, the bioethics professor, criticized such opinions as a “lack of imagination.”
“Imagine how much pressure those parents are under when they are told about organ donations after their children are medically judged to be brain dead,” Komatsu said.
“The biggest problem is drawing a line between a life that deserves to continue and a life that is not worth living,” he said.
Nakamura said the revised law is putting parents of children with chronic brain death under great strain.
“Even if nobody says anything, with the revised law, we are afraid of public opinion. We fear people may be thinking that we should donate our children’s organs. . . . I want society to value both recipients’ and donors’ lives,” Nakamura said.
“It happened (with our daughter) without notice. I want people to imagine that. What if their child suddenly becomes brain dead. I want people to think about it.”