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What is Lost instead of Death

Supplement to the description of trends in Japan

Shinya Tateiwa 2009/11/02
International Seminar on Euthanasia, at Seoul

translation by Robert Chapeskie

■Presentation notes

  I am very honored to have been invited to speak here today. My name is Tateiwa Shinya and I am currently employed by Ritsumeikan University in Kyoto, Japan. I am the program leader of "Ars Vivendi", a Global COE program selected as a focal point of research by the Japanese Ministry of Education, Culture, Sports, Science and Technology. My field of specialization is sociology, but I have also done research in areas closer to philosophy and ethics and have written several books related to bioethics. Three short pieces I wrote at the request of newspapers in Japan have been included in the collection of documents provided. They were written with the aim of stating my thoughts in an extremely concise manner accessible to lay readers. They have been included for your reference. I have had two more technical books published this year and last year in Japanese but they have not yet been translated. I regret not being able to provide you with a copy of these texts in your language.
  Today I am going to talk a little bit about several topics related to what I am thinking about right now and the current state of affairs in Japan. We plan to have Korean, Japanese and English versions of this discussion posted on Ritsumeikan University's Ars Vivendi website within the next few days so please visit the site if you are interested. A great deal of related information about each country can also be found there, although at the moment most of it is only available in Japanese. I hope to begin having it translated with some of the money we are receiving from the Ministry of Education, Culture, Sports, Science and Technology.
  I intend to make my presentation as short as possible. Once I have finished I would be happy to answer questions for as much time as I am given.
  To begin with, and this may overlap in places with Professor Jo's presentation, I would like to say something about this incident in Korea.
  I do not take the position that in all cases every means available must be employed in order to prolong the life in question. Regarding what is referred to as a "vegetative state", I think it is indeed very difficult to know what the world of the person in question is like. Positive research has shown that assumptions of a total absence of consciousness are often in error. And no matter how hard we try there is no method by which we on the outside can determine the state experienced by the person in question. It is also known that there is quite often a possibility of recovery, or at least a change in the state of the person in question even if the result cannot be called a full recovery. It therefore cannot be denied that ending the life of a person in this kind of state may in some cases result in their interests being harmed.
  On the other hand, it also cannot be denied that there is a chance measures taken will be in vain. But to say that someone has completely lost awareness, that nothing good whatsoever can be done for them, is at the same time to assert that they cannot be harmed. In other words, in every instance the state of affairs is either one in which extending the life of the person in a so-called vegetative state has the potential to benefit them or one in which it cannot harm them in any way. If this is the case can it really be said that keeping such a person alive violates their dignity? I do not think this position is tenable.
  Furthermore, regarding respect for the wishes of the person in question, while this is indeed important there are several things we must consider regarding this principle of respecting the will of the individual. Here I will discuss two of them.
  First, the current state of the person in question cannot be known, and could not have been known by even the person in question themselves in their previous state. The self determination people have deemed so important, including the self determination which disabled people around the world have insisted on being given because it has been taken away from them, is a self determination based on the idea that the person in question should be allowed to make decisions about their own lives because they know themselves very well. But in this case this assumption of self knowledge does not hold.
  Second, what sort of factors are at work here? The person in question may feel a strong desire not to cause trouble for those around them. I think this desire should be seen as a very good thing. But after recognizing this desire to be good to others, should not those around the person in question then say "don't worry about things like that - we will take care of you" and then keep this promise in practice? Is this not the best way to respond in kind to his or her desire to take care of others?
  If we take this approach then we must hold that the law/politics must be as cautious as possible even in cases like this one in which euthanasia/death with dignity may seem quite unproblematic.
  Next I would like to widen the discussion slightly while at the same time outlining the current state of affairs in Japan.
  Beginning in 2005 in Japan too there has been a movement to pass a law permitting the cessation of treatment in the case of patients in circumstances similar to the Korean case given as an example. This movement has not reached the point of a draft legislation being proposed. While there may still be caution concerning passing this kind of legislation I think there has been a definite trend towards permitting this kind of approach.
  There have also, however, been warnings/criticism concerning this kind of policy. One such criticism involves the points I have just made concerning the so-called "vegetative state". There are also concerns on the part of some people who, while they are not in this kind of state right now, worry about the extent of this trend towards the cessation of life-prolonging treatment and feel deeply anxious about their own inevitable progression towards a state where this kind of treatment will become necessary.
  Here several points can be raised. First, there are the actual circumstances which now exist. There are only a few states/regions, including Holland and the American state of Oregon, that allow the sort of "positive euthanasia" introduced earlier in which medication is given or other actions are taken which actively and directly lead to death. This is not the case when it comes to the "cessation" or "non-commencement" of treatment; there are many places in which this is allowed. There are also countries like Japan in which the permitting of these practices is not made explicit. This is also the case in Korea.
  In practice, however, in many cases people who could live if mechanical ventilation were used are not given this treatment and die as a result. In Japan those who reacted most sensitively to the recent movement towards legalization were people with severe disabilities. In response, those promoting this movement argued that the applicable scope of the laws/regulations would not include people who were conscious or had the ability to make decisions. However, it is a fact that some people give up on living who would like to go on living if the conditions needed for them to be able to do so were being met. And the degree to which this giving up occurs is proportional to the extent to which the cessation/non-commencement of treatment is tolerated. In other words, the rate of severally disabled people who require mechanical ventilation but do not use it and die as a result is very high in "advanced nations" tolerant of death. For example, in "conservative countries", including both Japan and Korea, while the rate of ventilator use amongst ALS patients is not high (30-40%) in nations more tolerant of death in these sorts of cases the rate is much lower. This shows that the sensitive reaction of disabled people to the initiatives of lawmakers is not "groundless".
  Second, there are some aspects of these concerns which seem to be based on rational grounds. Let me explain. Theorists in the field of bioethics have asserted that fundamentally there is no difference between giving someone an injection which kills them and deciding not to give someone life-saving treatment since in both cases we know that as a result of our decision the person in question will soon die. There are aspects of this assertion which are difficult to deny. Furthermore, most of those who assert that there is no difference between stopping/not doing something and actively taking certain measures also maintain that if the cessation or non-commencement of treatment is acceptable then actions which actively cause death should be accepted as well. If the first half of the argument is accept then this is what follows. This means that even at a theoretical level there is a sense in which the "slippery slope" argument can be correctly applied here. I also think this approach can be described as the dominant view, or at least one of the main lines of thought, in European and American "bioethics".
  We therefore cannot say that disabled people have no reason to be worried about a connection between the acceptance of the deaths of those who are seen as being different from them and their own deaths. The concerns expressed both in Japan and other countries are realistic concerns or in some cases concerns which have already been born out by actual events. They are also concerns which arise from following the logic of prevailing ethical views.
  Third, we must also consider history. Regarding the history of these issues in Japan, for example, while today there are not many people who know much about what has occurred in the past, the [current] movement promoting death with dignity is not actually the first of its kind. From the late 1970s and throughout the 1980s initiatives to create similar laws were promoted by the "Japan Euthanasia Society", later renamed the "Japan Society for Dying with Dignity". This movement continues today. At the time it began there was a movement in opposition to this kind of legislation just like there is now, and ultimately no law was passed. This was partly the result of the fact that those at the center of this organization support the idea that the birth of people who cannot contribute to activities of production within society should be prevented - in other words they support "eugenics" - and their sporadic public airing of these views led to a powerful backlash against them. The founder of this organization, Tenrei Oota was active in the creation of the National Eugenics Law which was enacted in order "to prevent the production of defective offspring" and was eventually struck down after receiving overwhelming international criticism.
  At present there are not many people who would openly affirm eugenic ideas. However, regardless of whether or not it constitutes eugenics, is it right to affirm the carrying out of actions which cannot be described as good for the person in question and even the carrying out of actions which lead directly to their death? Is it right to affirm the death of one of those who are now alive, imagining and claiming that this loss of life is desired by the person in question or saying that they have stated this themselves and that to carry out these actions is merely to accept the will of this individual who acts out of consideration for others around them?
  All over the world there are people who say this kind of position cannot be affirmed. There are people who assert that while certain individuals may impose a burden on those around them this should not be such a difficult thing to deal with, and what is needed is a society in which everyone, including these sorts of people, can live. I think there are many such people in Korea, and indeed in this room. Even in America and Europe where there is a more positive attitude towards choosing death most people with disabilities and organizations of people with disabilities have been critical of this trend. We have been working to make these issues known and intend to continue doing so in the future. I hope you too will learn more about them. We ourselves also want to know more.
  What I have said here today may have gradually become more and more difficult to follow. If so I apologize. But the fundamentals are very simple. There may be some cases in which being allowed to die is a good thing for the person in question. But how can we say that it is good? If such cases do exist are they not in fact exceedingly rare? Even if in some cases there may be little benefit in living, as long as there is no harm being done should we not then have everyone stay alive? This seems quite obvious. This obvious approach would presumably be affirmed by people from all over the world, including those whose lives are quite restricted. I think we must now dispassionately observe and evaluate what is currently happening both around the world and here in Korea from this perspective. Thank you very much.

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