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Tuesday, June 18, 2002
Diagnostic options seen skewed by dearth of autopsies, probes
By TOMOKO OTAKE
Recent controversy over a diagnosis of sudden infant death syndrome has exposed deep-rooted divisions among Japan's SIDS researchers.
In February, 14-month-old Hitoki Fujishima died suddenly at a nursery in Kagawa Prefecture, with bruises all over his body.
While his parents immediately suspected he died from physical abuse by nursery staff, an autopsy report suggested otherwise.
Iwao Ijiri, professor of forensic medicine at Kagawa Medical University, conducted an autopsy at the request of police. He concluded the case was a "suspected SIDS" death, which police interpreted as a natural death.
But the head of the nursery later confessed to the Fujishimas that she had stomped on Hitoki on the day of his death, casting heavy doubt on the credibility of forensic work. The professor, suddenly swarmed by reporters, held a news conference in April and voiced a tinge of regret.
"In hindsight, it would have been correct to write the cause of death was 'undetermined and under further investigation,' " he was quoted by a local newspaper as saying. "(But) police officers were with me when I performed the autopsy, and I told them there was a possibility that the death was caused by external factors. I never told police that it was a natural death."
Akihiro Takatsu, a professor of forensic medicine at Jikei University School of Medicine in Tokyo, said it was a pity the Kagawa tragedy cast the significance of forensic medicine in a negative light. In a 1999 study, Takatsu had warned against the misuse of SIDS diagnoses, saying it could be used to cover up accidents or crimes.
In his report, which was funded by the education ministry, Takatsu fiercely criticized a diagnostic guideline drawn up in 1994 by a SIDS study team under the health ministry.
The professor argued in the report that the guideline is flawed because it allows "suspected SIDS" diagnoses to be made even without an autopsy.
"The diagnosis of 'suspected SIDS' not only contradicts the (international) definition of SIDS but also is confusing because it could be used as a cover for externally caused deaths," Takatsu's report states.
Internationally, a complete autopsy is imperative for a SIDS diagnosis, to prevent deaths from other factors being confused with SIDS.
In the U.S., a panel of experts was convened in 1989 by the National Institute of Child Health and Human Development to review the nation's first definition, agreed upon in 1969, as "overdiagnoses" had become a problem.
The panel amended the definition of SIDS to the sudden death of infants "under 1 year of age" that remains unexplained after a thorough investigation, including a "complete autopsy, examination of the death scene and a review of the clinical history."
"A death is diagnosed as SIDS only after all other alternatives have been eliminated: SIDS is a diagnosis of exclusion," the Virginia-based National SIDS Resource Center states on its Web site.
In Japan, the health ministry's SIDS study team concluded in 1994 that, while a SIDS diagnosis should follow an autopsy, the "suspected SIDS" diagnosis can be given without one.
In notes that followed, the report states that such a diagnosis is possible when no substance that the infant could have choked on, including toys or food, is found. It also mentions briefly that the presence of milk or vomit in the respiratory tract alone cannot be grounds to establish death due to suffocation, nor can a baby's prone position.
Takatsu took issue with these notes, writing that such comments are inaccurate and should be scrapped.
He argued in his report that doctors should be very cautious about diagnosing SIDS when they find a dead baby in a prone position. He said sleeping face down "connotes a high likelihood of suffocation."
He has instead proposed a new guideline that says anatomists should be absolutely convinced that all other alternatives — including accidental or criminal death — have been eliminated. He also advocates excluding deaths of babies fewer than 7 days old or more than 1 year old.
"SIDS diagnoses have been made too easily in this country," Takatsu said. "No autopsy was carried out in about 80 percent of the cases diagnosed as SIDS. That is out of the question in other countries."
But Takatsu calls himself an academic "outcast," saying his suggestions have been ignored by the health ministry and the Japan SIDS Research Society, a nationwide academic association.
Hiroshi Nishida, chairman of the maternal and perinatal center at Tokyo Women's Medical University, who served as head of the SIDS research team that drafted the 1994 guideline, acknowledged that the nation's SIDS research has fallen behind that of other countries, as evidenced by the low autopsy rate for infants who suddenly die in Japan.
"We feel ashamed every time we go abroad to make presentations of our research, because no one trusts our data," he said.
Tatsuhiro Yamanaka, a Yokohama-based pediatrician and a member of Japan SIDS Research Society, said many people in Japan prefer not having an autopsy performed on their family members.
"A lot of people seem to feel that an autopsy could only hurt the dead even more," he said.
Yamanaka added that the lack of a "death scene investigation" can in some cases make it difficult to establish the real cause of death. Such probes are common in other countries, including Britain and Belgium.
"Overseas, experts versed in SIDS visit the scene of death, inspect the firmness of beds and ask detailed questions of family members. In Japan, police do not even care whether a parent smoked cigarettes (which is believed to increase the risk of SIDS)."
Nishida also noted that unlike in the U.S., where medical examiners and coroners investigate sites where a death has occurred, Japan lacks such a standardized investigation system.
Several big municipalities, including Tokyo's 23 wards and Yokohama, have medical examiners who, upon approval from families, perform autopsies on children who have died suddenly in circumstances where there is no suspicion of a crime. Only when a crime is suspected is an autopsy mandated.
But no medical examiner is available in many other parts of Japan, so the autopsy rate remains low on average.
Japan was forced to define SIDS differently from other countries due to such flaws in its medical system, which academics have no power to change, Nishida maintained.
He also questioned the recent trend by some parents to sue hospitals and nurseries for malpractice, saying they are anguished over the deaths of their children and want an outlet for their anger.
"The plaintiffs are emotionally too involved to see things objectively," he said.
The irony is that, with emotions so tangled, no one seems able to debate the issue from a purely scientific viewpoint. Government officials, who have avoided the issue for years, are now planning to get involved.
Akifumi Kuwashima, a health ministry official, said the ministry will set up a new study team by the end of the current fiscal year to come up with a standardized diagnostic guideline.
"We are aware that the existence of (conflicting) guidelines is creating confusion," he said. "We normally leave this kind of debate up to experts. But now that the matter has become so complicated, we have no choice but to help."