"This summarizes the essence of my 'brain death as a form of human relationships' theory, first appeared in Brain Dead Person, 1989. We should not miss the discrepancy between scientific reality and our emotional/spiritual reality."
"Japan's first heart transplantation was performed in 1968. This transplantation was accused of murder, and heart transplantation from brain dead donors has not been performed until this year. On February 28, 1999, in Kochi prefecture, a man was diagnosed as brain dead. As he carried the donor card, the physicians called the transplantation coordinator, and donor's heart, liver, and other organs were removed. There were three transplant cases from brain dead donors after the Kochi case in the same year.
People have been wondering why the Japanese medical system has refused brain death and transplantation for 31 years since the first heart transplant. I wrote about this elsewhere(1). Anyway, during this period, Japanese people have discussed and debated this topic repeatedly on the front page of nation wide newspapers, weekly magazines, and TV shows. Numerous books on brain death and transplantation were published, probably more than a hundred. Some of them became bestsellers. During the discussion curious arguments were presented which have not necessarily been argued in English literature on the topic.
Among them was the problem of 'the two aspects of brain dead being.' This theme was first presented by Michi Nakajima's book, 'Invisible Death'(1985)(2). She stated that most family members did not accept the patient's death when he/she was diagnosed to be brain dead, but that they for the first time accepted death and burst into tears when the patient's heart beat stopped, and the body became cold. This book was widely read and shocked people. Takeo Sugimoto, a physician living in Kyoto, experienced a brain death case when his 6-year-old son was diagnosed to be brain dead. As a physician he perfectly understood the medical situation of his son, however, as a father he could not accept his son's death. He could not help thinking that his brain dead son was still alive and he continued intensive care to his son. When his son's heart beat stopped, Dr.Sugimoto for the first time realised his son was truly dead. In his book, 'Uniform my Son might have Worn'(1986)(3), the discrepancy between 'scientific rationality' and 'humane emotions' which simultaneously occurred inside Sugimoto's mind was vividly described.
In 1989 I published a book, 'Brain Dead Person,'(4) arguing that the death of humans should be considered from the viewpoint of human relationships. That is to say, the question whether brain death is human death deeply depends on the relationships that the brain dead person has had with each surrounding person at the bedside. As in the case of Sugimoto, a father who has had deep intimate relationships with his son may hardly accept his son's death as long as the body is warm and moist. However, a physician who saw the boy's body only a week ago may easily believe his death because the physician has never had long intimate relationships with the boy. In that book, I argued that the essence of the concept 'brain death' in terms of ethics lies not inside the brain, but just in the human relationships the brain dead person has had between him/her and the surrounding people. This theme 'brain death as human relationships' was widely discussed in 1990s.
After I published that book, a medical student, 29 years old, became brain dead. Her name was Yoshimi Fujiwara, whom I met twice when she was alive(5). She was dead when I was in the United States. A year after her death, I met her mother, Yasuko Fujiwara, and talked a lot about Yoshimi's brain death. In this case, too, the mother and father did not accept their daughter's death when her brain death was medically confirmed. They were taking care of her body at the bedside until her heart beat stopped. When her father left the room, he stood by the door calling his daughter 'Do your best!' Her mother put perfume on her daughter's brain dead body. They never thought their daughter was dead. And at the moment her heart beat stopped, they realized death really occurred on their daughter, finally accepting she would never come back.
I think there are two aspects, or realities, concerning human death; one is scientific/medical aspect that requires uniform criteria of death, while the other is philosophical/relationship-oriented aspect in which human's death depends on the human relationships between the dying patient and the surrounding people. Of course both aspects are important, but I want to emphasize the importance of the latter because our modern medicine and 'rational' bioethics sometimes miss the latter reality in which most ordinary people actually live. Medical staff, particularly doctors, have to pay special attention to the relationship-oriented reality. In my experience, nurses easily understand what I mean, but doctors and 'bioethicists' are the last to accept this.
Recently a very curious case was reported in a local newspaper, Kobe Shimbun(6). According to the article, a 17-year-old girl was clinically diagnosed to be brain dead, on September 5, 1999, in Aichi Prefecture. As she carried the donor card, the transplantation coordinator of the area came to the hospital, and talked with the family about transplantation. The girl was willing to donate her organs when she was alive. Her mother and father knew this very well. Hearing explanations from the physician and the coordinator, her mother understood everything by her 'head,' but her emotions did not agree. Her mother wanted to respect her daughter's will of donation, however, she later said to the reporter that it was a real hell for parents to permit physicians to cut their daughter's warm body. Her father decided to respect his daughter's will, but at the same time, he made up his mind to be burdened with a guilty conscience for all his life, because he could not help thinking that he himself finally put out his daughter's 'flame of life' when he agreed to transplantation and signed a letter of consent.
Family members were sometimes put into emotional chaos especially when their daughter or son became brain dead. In the above case, the family members must have suffered a psychological trauma, and will probably continue to have a guilty conscience. Bioethics has focused its attention on moral justification and acceptability; it has ignored this dimension of human psychology. Of course, caring ethics and feminist bioethics pay special attention to this emotional dimension, but brain death issues seem to be outdated in the field of bioethics, hence, the importance of emotions in ethics of brain death and transplantation is seldom discussed in English literature on the topic(7). In contrast, this topic has been widely discussed in Japan's brain death debate in the mid-80s through 90s. Most of the discussion was written only in Japanese, but I believe it is of great use for world-wide researchers of this field.
I want to emphasize the importance of philosophical analysis of the concept, 'the moral and ontological status of the brain dead being.' As English bioethics has made every effort to discuss 'the moral and ontological status of the fetus,' Japanese bioethics seems to have paid special attention to the moral and ontological status of the brain dead being. In this process, philosophical/relationship oriented aspect of brain death has developed. Some bioethicists say that the brain dead is not a human person, hence that it is equivalent to a mere thing just like a pencil or a cup. This theory ignores the emotional dimension of human psychology that plays an important role in [10/11] our everyday reality. This particular role must be scrutinized philosophically. If a brain dead body is equal to a mere pencil or a cup, it would never put the family members into emotional crisis. For family members, the brain dead body must be some special 'being' that can never been reduced to a mere 'thing.' If so, what sort of being should it be? This is the very question we are faced with when we encounter people who did not accept their family member's death until his/her heart beat stops. In my book in 1989, I used the term 'brain dead person.' This wording seems very strange from the viewpoint of mainstream bioethics because it insists that a human being can be 'brain dead' and 'a person' at the same time. But from a philosophical/relationship-oriented perspective, a human being can be a person, and at the same time, brain dead. He/she is brain dead in a medical sense, and may still be a person in a sense that he/she can make his/her father say, by the door, 'Do your best!' Our bioethics, or lifestudies, must not miss this point.
While European and American bioethics ignore brain death issues, Japanese bioethics has continued thinking about the ontological meaning of brain dead being. Ordinary people seem to think this problem is a big challenge to our view of life and death, that is to say, we are facing a profound philosophical and religious question. 31 years was a long period of time for patients who have waited for transplants, but the period has provided meaningful time for thinking deeply about life and death in contemporary civilization.
References
(1) I analyzed some of the theories in the following paper. Masahiro Morioka "Bioethics and Japanese Culture: Brain Death, Patient's Rights, and Culture Factors" EJAIB 5 (July 1995):87-91. My homepage, http://homepage1.nifty.com/lifestudies/, has the full text of the paper.
(2) Michi Nakajima Mienai Shi(Invisible Death) Bungei Shunju, 1985.
(3) Tateo Sugimoto "Kita kamo Shirenai Seifuku(Uniform my Son might have Worn)" Nami Shobo, 1986. In some Japan's elementary schools, boys and girls wear special uniforms.
(4) Masahiro Morioka Noshi no Hito(Brain Dead Person) Fukutake Shoten, 1989.
(5) Masahiro Morioka 'Noshi to no Deai(Encounter with Brain Death)' in Yanagita (ed.) Shi no Hen'yo(Transformation of Death) Iwanami Shoten, 1997:93-116.
(6) Kobe Shimbun November 1-2, 1999. Chunichi Shimbun, a local newspaper in Aichi Prefecture, originally distributed this article.
(7) For example, T.L.Beauchamp and L.Walters's Contemporary Issues in Bioethics (Wadsworth Pub. Co.) has had no paper on brain death since its third edition, 1989."
Article by:
Masahiro Morioka, in: Eubios Journal of Asian and International Bioethics N°10 (2000),p.10-11.
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