5.2. Can the "Japan organ transplantation law" promote organ procurement from the brain dead?

- Alireza Bagheri, M.D.
Department of Neurology, institute of Clinical Medicine
University of Tsukuba, Tsukuba 305-8575, Japan
bagheri@sakura.cc.tsukuba.ac.jp

Introduction

In Japan despite the availability of the necessary technology and expertise, till recently organ transplantation from brain death was not a part of medical practice. From the large volume of written commentary, one can isolate two main explanations have been repeatedly emphasized, first, cultural resistance which refers to the Japanese folk religion (Veatch 2000, Morioka 1995) and second the lack of legislation (Fieldman 1994) which the physicians were not allowed to perform organ transplantation from dead brain donors. Although the primary ambition was to bring the debate to the end by a legislation on the subject (Morioka 2001), but even after ratification of the law concerning organ transplantation in 1997, and besides the existence of public acceptance of brain death as human death among considerable percentage of the people at this time (52% Asahi poll 1999), still the number of transplanted organs from brain dead donors has no satisfactory record.

Outlines of the current law

The current law which was enacted in 1997, allows organ procurement from both brain dead as well as dead body in restricted conditions, in which the donor must express his/her intention in a written document beforehand and the family has no objection and agrees with donation. (Law No. 104, 1997).

The law allows individuals to choose the definition of death, either brain oriented or traditional definition of human death based on their own views. In addition to cornea and kidney, other organs included heart, lungs, pancreas, liver and small intestine. Selling and buying organs and organ removal from a person under fifteen years old are prohibited. Although it was stated that the law shall be reviewed in approximately three years after enactment but after five years of enactment of the law, many proposals for revision have been submitted to the authority, but no conclusion have been reached so far.

Current Situation of organ procurement

No organ procurement from brain dead occurred in the first two years until February 28 1999, and in the five years since the law was enactment only 22 cases fulfilled all the legal requirements and medical criteria for donor eligibility. (JOTNW, December 2002).

These are the numbers of cases, which have been documented so far, but it has been expressed that several possible donor have held valid donor cards, but no organ procurement was performed because of the lack of the family agreement (Akabayashi 1999). Actually who knows the real number of dead brain cases which had donor card, signed by themselves as well as their family, but under a very emotional situation which is obvious for a family which lost their beloved ones on that time, to decide to be not agree to donation?

In Japan around 7000 people became brain dead every year (Watanabe 1994) and the number of dialysis patients has reached more than 160.000, increasing about 10.000 patients each year while for example the number of renal transplantation is about 600 to 700 from living donors including fewer than 200 cadaveric transplants (Hiraga et al 2000). However still 13072 patients are waiting to receive different organs. It shows even if all dead brain patients come to the transplantation procedure still demand is more than supply (Table 2).

Contribution of the law on current situation:

Nevertheless the regulations has an axial role to promote organ procurement but no one can have such an expectation that even a comprehensive law can fill the gap between supply and demand of organs and solve problem, because many issues like medical indication, organ viability, and social acceptance must be taken into account.

Before the current law, in order to perform organ transplantation Japanese had to go abroad (Awaya 1999) and ratification of the law brought a hope that needy patients will receive organs from their compatriots. But how this hope came true by the law? Thirty years, public discussion on brain death and existence of social sensitivity pushed the legislators to approach in a narrow way and caused overemphasis and exaggeration of some cultural norms like the role of family. In fact, the gap between demand and supply is so wide and there is no expectation that even a proper law can solve the problems and fill out this gap but what is important is that the law would be formulated in a way which have capability to encourage people for organ donation and facilitate organ procurement by move all potential donors towards actual ones.

In order to evaluate the capability of the law the following issues will be discussed.

Relative Cultural Issues

As it has been stated the so-called "problem of brain death and organ transplantation in Japan" cannot be attributed to the lack of transplant technology and expertise or to the shortage of economic resources, whereas what is at work, must be cultural issues. In other words the Japanese societal culture and beliefs, towards life and death had a great role to shape the current situation and it is crucial to understand how these factors can play a preventative or promotional role for transplantation within society.

However, cultural aspects of transplantation should not be viewed as barrier to be overcome, but as opportunities to understand the complexity of the issues that are associated with practice of organ transplantation.

The Role of Family

The predominance of the role of family, particularly in the process of dying which is regarded as a family event in their culture (Kimura 1998) is inevitable and has been stated by many Japanese as well as foreign commentators (Feldman 1994). Although in Japanese society, the family might have more influences on the personal affairs, than other societies, but the current law gives the family complete control on the individuals` action, which makes the individuals vulnerable to their family's hands. According to the law, family authority has a power to veto individual expressed wishes to donation (Akabayashi 1999).

Current law does not respect individual's autonomy as well as family authority simultaneously, which means that if an individual's autonomy is in conflict with family authority in terms of willingness to donation, the law violates individual's autonomy in favor of family authority. Nevertheless, the exercise of autonomy in Japan is different from western countries. But in contemporary Japan, people are not stranger to the notion of autonomy, at least to related-autonomy (amae) (Kimura 1995).

However, if we analyze autonomous action in terms of normal chooser who acts (1) intentionally (2) with understanding, and (3) without controlling influences, as Beauchamp and Childress explain, therefore an action can be autonomous by degree because last two conditions of autonomy are the matter of degree thus even if an action is not absolutely a free choice and there are some sort of controlling influences by others, still an action can be autonomous. (Beauchamp and Childress 2001). In Japan family authority can veto an individuals wishes then the degree of autonomous action would be considered, zero in Japan, while it is not true because many examples shows that the individual autonomy is some how respected in among Japanese.

Lack of Surrogate Decision Makers

In Japan family making decision on behalf of the patient is generally accepted behavior (Kimura 1998), and in a hospital setting which a patient is incompetent or a minor, family have a strong influence in decision-making behalf of the patient by endorsing the family's ability to presume patient's wishes (Asai 2001). However, according to the law on the one hand the powerful family authority is able to prevent a member of the family to hold donor card if they could not come to consensus or in an extreme situation family can breach their previous agreement and violate patient's prior written consent to organ donation. In the other hand in terms of surrogate decision making, family is disarmed and unable to be as a substitute judgment at the time of brain death even if the family is aware of patient's interest but there is no will written by the patient.

Therefore the question will raise that what kind of authority family possess? However one may claim that what is in practice in Japanese society is based on the role of family in decision-making and is accepted through the society in which the will of family must prevail.

Does the law really reflect Japanese culture?

It must be proved whether the ultimate power, which is given to the family in terms of clinical decision-making, is really based on Japanese culture? I would argue and bring some examples, which demonstrate that it does not exactly correspond to the Japanese culture.

For example, the final report of the Japan Science Council on "Death with Dignity" in 1994 confirms that in the terminal stage, the patient's whishes should be respected, based on the patient's autonomous choice (Kimura 1998). Who can criticize the Japan Science Council, which has respected individual's self-determination and autonomous choice, for adopting guidelines in contradiction with Japanese culture?

Regarding to surrogacy, the article 4 of the supplementary provision of the current law has accepted family as a surrogate decision maker for a dead person who did not left any written document to show her/his intention to donate his/her eyeballs or kidneys, and if the family consents in writing, the eyeballs or kidneys will removed. If there is no social acceptance of surrogate decision making by family at all, how the law has accepted it only for dead person? Note that the donor card, which is used in Japan, is for both, brain dead donors as well as organ removal from a dead person.

Who can claim that since the previous law the family as surrogate decision making lost its authority in Japanese society? The claim here is not to ignore the role of the family, because public policy even in the individualistic societies where the principle of respect for autonomy is quite dominant and the law does not require family consent, but the importance of family agreement before organ removal is emphasized and the effort is focused on how to reach family agreement. (Siminoff et al 2001). Therefore, although the role of family is indisputable in Japanese society but balance of evidences suggests that the law has overemphasized and exaggerated the role of family which gives the family ultimate authority which can prevents individuals even from holding a donor card.

Complexity of Donor Cards

The donor card or "Organ donation decision card" as it is called in Japan, has its own complexity. This card is a double signed card, which means, in order to be valid it must to be signed by an individual who intend to be a donor and also must be signed by his/her family. Therefore, in fact the only legal card is the double-signed card and if the family refuses to sign, the card is considered invalid. The family can express their opposition at any time, not only at the time of signing a donor card but also at the time which an individual declares brain dead. The family can change their mind and has an extreme authority to ban organ removal even if they have already agreed and signed the donor card.

However the donor card is used for both, cadaver's donors as well as brain dead donors in the same way thus in practice, any limitation and complication which exist for organ procurement from a brain dead, under current law it would affect to the organ procurement from the cadavers too.

Organ removal from children

The law prohibits organ removal from children under fifteen years old with stating that the declaration of intention for organ donation by persons under fifteen years old is invalid. (MWHL Annual Report 2001). The reference is the eligibility age for making a will in the Japan's civil law. (Japan civil law code, article 961). While one of the medical consideration is the size of the organs, which is obvious that in many cases a suitable donor for a small child would be a child, not an adult, in fact the law ignores the need for organ transplantation for those children whose lives require to receive an organ. Some proposals, which have submitted for revision of the law, have targeted this article of the law. Among them, which proposed by Morioka and Sogimoto, they raised two proposal A and B and in fact they suggested to extend organ procurement to the age of 6 years in proposal A and limited it to 12 years old in proposal B (Morioka 2001). However, the basis for the " age grouping " in their proposal is unclear (Bagheri 2001).

Conclusion

Although the law has many positive points but it can be claimed that in terms of increasing the number of actual donors among potential donors the law has not succeeded. It is not fair to say that only the law has made current situation nor the negative impact of the law on current situation would be ignored. It should not be forgotten that the effort to ratify the law was not to ban organ procurement whereas, it is for facilitating and encouraging people for organ donation with hope to be able to promote organ procurement in a life saving campaign.

It seems such an unbalanced value to the role of family can be seen as an obstacle to organ procurement from brain death in Japan. However approving surrogate decision-making, which is not in conflict with Japanese culture is a proper solution for lack of "donor's prior declaration", either when the patient is a child who is not eligible to express his/her wish or an adult in brain death state who has not left a written document.

There is no benefit to overemphasize the social norms, which surely will change in near future. In fact, the risk of overemphasizing family authority to such extent would also have a negative impact on all medical decision making.

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