From Komei Shimbun, November 18, 1997
Towards Prevention of SIDS (Sudden Infant Death Syndrome)
No More Tragedies (4): Task before the Government
NATIONWIDE MEDICAL EXAMINER SYSTEM SOUGHT
Strong Support System for Victims’ Families Called For
What accounts for the increasing attention being paid to the unfamiliar-sounding disorder called SIDS?
At present, the mortality rate of infants in Japan is 0.4%, or lowest in the world. This rate represents a reduction to about a tenth of the rate prevailing during the period of rapid economic growth of the decade of 1955-64. As a result, SIDS–which has not been an object of much public attention in the past–has recently moved into the limelight.
The cause of SIDS is still not clearly known. It is believed that a delayed response, for some unknown reasons, to the state of breathlessness (the so-called startle response) is responsible for SIDS. The state of breathlessness during sleep is not uncommon even among adults. The critical question is whether or not the sleeper can resume breathing before crossing the fatal line.
In any event, losing a baby to SIDS is traumatic. The unfortunate reality in Japan is that the absence of clearcut criteria for identifying SIDS intensifies the grief and agony of the victim’s family.
The absence of reliable criteria for identifying SIDS leads to the following two problems. First, parents or caregivers may be unfairly accused of a crime when a case of SIDS is incorrectly labeled as an accidental death. Secondly, a case of accidental death is erroneously ruled as SIDS, allowing hospital operators and childcare providers to avoid their responsibility. In this case, the faulty childcare management which causes the accident may not be rectified, leading to a repetition of similar accidents.
The absence of unequivocal criteria for SIDS is also responsible for disputes over cause of death being SIDS or accidental suffocation. This type of litigation, however, is peculiar to Japan; these cases are rare in Western nations. What accounts for this difference?
The medical examiner system is well developed in advanced Western countries. Whenever there occurs an unusual death, a medical examiner–a physician specialized in investigating causes of death–rushes to the death scene with police officers, investigates the scene and the process leading to death, carries out a postmortem examination (external examination of the body), conducts a number of tests, makes an autopsy, and determines the cause of death.
In other words, the administrative system is well equipped to provide adequate account of unusual death to the surviving families of the victim.
Unusual deaths are those that are not from causes which are subject to medical treatment. They include sudden deaths at home and places of work, suicides, homicides, and deaths caused by traffic accidents. SIDS cases are naturally included in this category. In suspected SIDS cases, an autopsy is invariably performed on the infant’s body since SIDS cannot be identified by a postmortem examination alone.
In Japan, as in other countries, an autopsy is considered necessary for specifying SIDS as the cause of death. In reality, however, an autopsy is conducted in less than 20% of suspected SIDS cases across the country.
In Japan, the medical examiner system is in operation only in the 23 wards of Tokyo Metropolis, and in the cities of Osaka, Yokohama, Nagoya, and Kobe. Tokyo and Osaka have their own facilities for performing autopsies. The 23 wards of Tokyo boast a very high autopsy rate of 85%. By contrast, only postmortem examinations are conducted in a majority of districts which have no medical examiner system. In these districts, the degree of accuracy in determining the specific cause of death is very low.
Yoshiyasu Adachi, administrative officer of the Tokyo Metropolitan Medical Examiner’s Office, stresses the usefulness of the medical examiner system when he states: “If we developed this system across the country and analyzed causes of death and the conditions under which the death occurred using the gathered data, we could minimize the chances of unusual deaths including SIDS.”
Professor Hiroshi Nishida of Tokyo Women’s Medical College, who until last year had headed the SIDS research team of the Ministry of Health and Welfare, says, “The quality of data on SIDS cases which number more than 600 each year is uneven since they are not recorded under a systematic reporting system. If a nationwide medical examiner system were developed, this shortcoming could be corrected, and the numerous deaths that did occur could be made to serve as cornerstones in our effort to minimize chances of SIDS occurrences.”
In districts covered by the medical examiner system, nearly all of the cost of autopsy is paid out of public funds. By contrast, in districts that do not have the medical examiner system, the financial burden on the grieving family may amount to several hundreds of thousand yen, adding insult to injury.
Although it is true that most Japanese are not emotionally at ease with the notion of an autopsy, it is the only way for the surviving family to know for sure whether the death was caused by an accident, a medical disorder or a disease, or a criminal act. In the case of Tokyo Metropolis, nearly one hundred percent of the surviving families agree to an autopsy when the need for it is explained to them by staff members of the Medical Examiner’s Office.
The Medical Examiner system was established under the provisions of the Law Concerning the Autopsy and Preservation of Dead Bodies which was promulgated soon after the end of World War II. A Cabinet Order specifies which districts must be served by medical examiners. Positive governmental efforts to expand the areas covered by this system is called for.
Another task that lies before the government is the need to develop an effective support system for the families of SIDS victims. In advanced Western nations, a system of providing both moral and tangible supports to grieving families is firmly established. When SIDS occurs, family associations are informed of the case by the ambulance personnel or medical practitioners. Volunteer helpers (“befrienders”) from the family association rush to the parents’ home to look after their children and take care of their domestic chores, while providing strong moral support to family members.
An effective family support system requires three types of personnel: befrienders who can share sorrows with family members, professional counselors who can provide psychological support, and physicians who can answer medical questions. Securing necessary human resources for these assignments is another important task before the government.
Our country can draw many other lessons from the United States and other advanced Western nations, which include: (1) establishing a SIDS information desk at all government offices across the country, (2) creating a SIDS research institute, (3) providing training to medical personnel, emergency medical treatment personnel, childcare professionals, police officers, and funeral service providers on how to talk to and deal with surviving family members, and (4) initiating a 24-hour telephone answering service.
In this connection, it is worth noting that the SIDS Family Association Japan has published a booklet When You Encounter SIDS which contains guidelines for medical personnel, police officers and others on how to deal with families of SIDS victims.
An important fact to keep in mind is that, although the rate of SIDS occurrences can be effectively lowered, SIDS itself cannot be eradicated. It is pointless for a mother to blame herself unnecessarily, thinking that she could have prevented her baby’s death.
How Japan handles the SIDS question, perhaps, serves an acid test of whether or not it is a country that is gentle to human beings.
(End of Series)
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