The philosophy of our proposal are as follows: (1) Various ideas of life and death, including that of objecting to brain death as human death, should be guaranteed. We would like to maintain the idea of pluralism of human death; and (2) We should respect a child’s view of life and death. We should provide him/her with an opportunity to think and express their own ideas about life and death.
Dr. Allan Shewmon showed in 1998 that the hearts of many brain dead patients kept beating more than a week. 20 patients’ hearts kept beating for at least two months, seven patients’ hearts for at least six months, and the longest case was 14.5 years—this patient became brain dead at the age of four, and his heart is still beating now[１]. Most brain death laws were established before these findings. And even now many specialists do not know this fact in Japan. In these cases, the brain dead bodies become medically stable after the acute stage, and this fact is contrary to the general public’s belief about brain death.
In 1995, a baby was born in a rural area of Japan but soon became brain dead (no spontaneous breathing, no brain stem reflexes, flat brain waves). In Japan, we have no legal criteria of brain death for children under the age of six. If we had had such criteria, this baby would have been diagnosed as brain dead. Her parents believed that their brain dead baby was still alive, and named her “Hina.” They loved her, cared for her in the hospital, and their baby “lived” to the age of four with a respirator, in the state of brain death.
The medical staff encouraged the parents and celebrated Hina’s birthday every year. Hina grew taller and weighed 13 kilograms when she was one year old. When Hina “died” at age four, the parents slept with her cold body, and felt happiness recalling the past four years. If the doctors had declared death and organs had been removed, the parents would have never experienced these four years with Hina[２].
Japanese Organ Transplantation Law was established in 1997. The characteristics of the law were (a) pluralism on human death, (b) the donor’s prior declaration principle, and (c) family consent.
(a) Pluralism on human death
This principle means that if you want to be an organ donor after brain death, you have to write it down on a donor card or label beforehand. Then you are considered dead when brain death is diagnosed. If you object to brain death and transplantation, you don’t have to have a donor card. Then you are considered alive until your heart stops beating.
(b) The donor’s prior declaration principle
Donor’s prior declaration of permitting (i) legal diagnosis of brain death, and (ii) organ removal, both in the form of a written document (i.e. donor card or label), is necessary for performing (i) and (ii).
(c) Family consent
Family consent is also necessary for both (i) performing legal diagnosis of brain death, and (ii) organ removal.
Let us turn our eyes to public acceptance of brain death in Japan. According to several public opinion polls during the 1980s-90s, about 40-50% respondents replied that brain death is human death, and about 20-40% replied brain death is not human death.
The Prime Minister’s Office conducted a public opinion poll concerning “donor’s prior declaration and family consent” in May 2000. The results were the following. (1) If donor’s prior declaration exists, that is sufficient. Family consent is not necessary (20.6%); (2) Both donor’s prior declaration and family consent are necessary (69%); and (3) If family consent exists, that is sufficient. Donor’s prior declaration is not necessary (2.1%).
Professor Veatch suggested in this morning’s presentation that it is a Japanese tradition to permit families to choose the definition of death of the patient, but I think this may be questionable because 70% replied that both donor’s prior declaration and family consent are necessary.
The Prime Minister’s Office conducted another public opinion poll concerning “family’s attitude” to the brain dead donor’s prior declaration in July 2002. The question was, “Do you respect [57/58] your brain dead family member’s prior declaration and agree to organ donation?” And the results: 41% said “Yes,” 22.4% said “Probably yes,” 26.2% said “I don’t know until I am in the situation,” 4.6% said “Probably no,” and 5.8% said “No.” This shows that the Japanese tradition is to try to respect the wish of the brain dead patient as much as possible. But sometimes this attitude leads to a kind of tragedy when the wish of the brain dead patient and the wish of the family members are conflicting.
Japan is one of the exceptional countries where a heated nation-wide debate on brain death lasted for 15 years. More than 170 books on brain death have been published. One of the curious discussions on brain death was the “human relationship oriented analysis of brain death,” which was explored by, for example, Michi Nakajima (1985[３]), Tateo Sugimoto(1986[４]), Masahiro Morioka (1989[５]), Kunio Yanagida (1995[６]), Yoshihiko Komatsu (1996[７]), and others.
The main point of the theories was that “life and death” of a brain dead person is, in a sense, shared with the family at the bedside. In other words, “death” of a brain dead person is located in the relationships between the brain dead person and his/her family members. The sense of “reality” the family members would have when they are faced with the brain dead person is something that has been constructed by the history of close relationships they have accumulated with him/her for many years.
And this reality sometimes makes the family think that the brain dead person is alive, and he/she is still “there,” while they know the fact of brain death. This was called “brain death as a form of relationships” (by Morioka), “death as the second person” (by Yanagida), or “resonant death” (by Komatsu). Hence, the death of a brain dead person has two aspects, the “ontological aspect” and this “relational aspect,” and both are important for us.
The current Japanese law seems to support the idea that “death” of a brain dead person is shared by the brain dead person him/herself and the family. About 70% of the Japanese say that both donor’s prior declaration and family consent are necessary; this idea seems to be generally accepted in Japan. And the Japanese law basically guarantees the pluralism of human death. I believe that this is a very important achievement of the current law.
The current Japanese law is in the process of reconsideration since 2000. The discussed points are (1) whether to maintain “pluralism on human death”; (2) whether to maintain the donors prior declaration principle; and (3) whether to perform brain death diagnosis on a child under 15.[８]
Some proposals have been published and/or announced. Morioka and Sugimoto’s proposal is one of these, although it is not the most politically influential one[９]. The main points of our proposal are 1) we should maintain pluralism on human death, 2) a child is allowed to have a “child donor card” if he/she wants, and 3) brain death diagnosis can be performed only when a child has a donor card and the parents agree[１０].
Concerning the problem of “age”—this is a big problem here—we presented two proposals, a) children between 6 and 15 years can have donor cards, and b) children between 12 and 15 can have donor cards. Professor Sugimoto and I was not able to determine which was more appropriate, hence this is an open question for all of us. We excluded children under six because their hearts might keep beating more than a year in the state of brain death. The hearts of young brain dead bodies can live longer than those of adults.
The philosophy of our proposal are as follows: (1) Various ideas of life and death, including that of objecting to brain death as human death, should be guaranteed. We would like to maintain the idea of pluralism of human death; and (2) We should respect a child’s view of life and death. We should provide them with an opportunity to think and express their own ideas about life and death. The child donor card should be introduced.
It may be helpful to remember the rights of children. I think we should take into account the spirit of “Convention on the Rights of the Child.” In Article 12 of the convention, we can find this expression, “States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child.” This means that we have to give children an opportunity to express their ideas about their own body, their own health, their own life and death. This is the basic idea of our proposal. I would like to add one thing here. This is not the assertion of the right of self-determination [58/59] of children. Sometimes our proposal is misunderstood as a statement about self-determination, but it is wrong. Our point is that we should give children an opportunity to express their ideas, and the adults should hear them and have discussion with them. This process must be a kind of necessary condition for brain death diagnosis on very young children.
Concerning professor Veatch’s idea, we don’t think a higher-brain definition of death is such a good one, because just as Professor Shoji has already mentioned this morning, higher-brain dead patients, for example some vegetative state patients actually have the potential to recover from that state after a couple of months. Hence, I think it is dangerous to accept a higher-brain definition of death.
Dr. Sugimoto, one of the proposers, donated the kidneys of his brain dead son, who was six years old, after his heartbeat stopped. However, he has worried about, for more than 15 years, whether his decision was really right because he had never asked his son’s wish beforehand. Our proposal was, in a sense, based on his experience.
The following is a survey result concerning “family’s attitude” to the brain dead child’s prior declaration or wish, which was conducted by the Prime Minister’s Office in July 2002. The question was “Should we respect the wish to donate organs expressed by a child under 15?” The results were as follows. (1) We should respect the child’s wish even if it was made by a child under 15. (28.3%). (2) Other persons, including his/her family, may decide instead, because a child under 15 cannot make an appropriate decision. (32.4%). (3) It is true that a child under 15 cannot make an appropriate decision, but other persons, including his/her family, are not allowed to decide instead. (21.8%). (4) I don’t know. (16.1%).
These results suggest that we have not reached a consensus on this topic yet. We are faced with a difficult question concerning the relationship between adults and children.
For more information, please visit http://www.lifestudies.org/specialreport01.html
[１] Shewmon DA: Chronic “brain death”: meta-analysis and conceptual consequences. Neurology 51(6):1538-1545, 1998.
[２] Chisen Kamei, Hidamari no Byoshitsu de. Medica Shuppan, 2002. (Written in Japanese)
[３] Michi Nakajima, Mienai Shi. Bungei Shunju, 1985. (Written in Japanese)
[４] Tateo Sugimoto, Kita Kamo Shirenai Seifuku. Nami Shobo, 1986. (Written in Japanese)
[５] Masahiro Morioka, Noshi no Hito. Tokyo Shoseki, 1989 (Written in Japanese; An English translation will be found at
[６] Kunio Yanagida, Gisei. Bungei Shunju, 1995. (Written in Japanese)
[７] Yoshihiko Komatsu, Shi wa Kyomei suru. Keiso Shobo, 1996. (Written in Japanese)
[８] Masahiro Morioka, “Reconsidering Brain Death: A Lesson from Japan’s Fifteen Years of Experience,” Hastings Center Report 31, no.4 (2001): 41-46.
[９] The most politically influential proposal was that presented by Professor Saku Machino, which sought to enable organ transplants based on family consent only. See Masahiro Morioka, “Reconsidering Brain Death: A Lesson from Japan’s Fifteen Years of Experience,” Hastings Center Report 31, no.4 (2001): 41-46.
[１０] Masahiro Morioka and Tateo Sugimoto, “A Proposal for Revision of the Organ Transplantation Law Based on a Child Donor’s Prior Declaration,” Eubios Journal of Asian and International Bioethics 11 (2001),108-110.
Source:
==> Author: Masahiro Morioka
==> International Network for Life Studies
© 1999- International Network for Life Studies
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