"We must change the world to make living possible--an 'ars vivendi' scholar, Prof. Shin'ya Tateiwa questions the 'trend towards hurrying death'"
Yomiuri Shimbun Osaka head office edition, May 24, 2012, Evening paper (Kokoro section) Japanese Page
To begin with, living --Shin'ya Tateiwa (51), a professor of sociology at Ritsumeikan Universityfs Graduate School of Core Ethics and Frontier Sciences, has been leading gars vivendih research initiatives for the past five years. They do not search for the meaning of life conceptually. On the contrary, in reality our lives are pushed and pulled by the state of the world. If so, what is important is making use of technology and transforming social systems to make it easier to live. He suggests that before we think about how to die we should first think about the gart of livingh and what can be done to support it. (Editorial board member Shohei Hara).
"Disabilities/Aging/Illness/Differences" and Society
Social interest in topics related to death such as terminal care and Buddhism has been increasing.
"Actually, this boom started a long time ago, with books on thanatology and how to die appearing in large numbers in the 1980s. It has been said that Japanese people avoid talking about death, but in fact we discuss it a great deal."
This was disturbing.
"It seems to be a trend towards hurrying death. Shouldnft living come first?"
In 2007 government research funding (Global COE Program) was obtained and the "Ars Vivendi : Forms of Human Life and Survival" program was established. (Initiatives begun as part of this program are now being continued at the Research Center for Ars Vivendi within Ritsumeikan University).
"Disabilities/Aging/Illness/Differences" was made the central pillar of the program. An emphasis was placed on investigating how people dealing with various disabilities, aging, and illness, or people with minority bodies or minds, have come to live and examining both history and the current state of affairs from the perspective of these individuals. Graduate students with conditions such as severe physical disabilities, visual disabilities, hemophilia, and gender identity disorder also contributed to this research.
A group of people with cerebral palsy who appealed for "no more killing" amidst ongoing cases of parents murdering their disabled children. A movement for a reform of mental illness care to reduce isolated confinement and discrimination. A patient group that obtained insurance coverage/public financing of dialysis. People with severe disabilities who are seeking around the clock nursing care...
"Society is built for the 90% majority. Even if this is seen as inevitable, society must compensate for the disadvantages this causes for the other 10%. It is of course impossible to live in society without social insurance, freedom of movement, and methods of communication such as braille and subtitles, and discrimination and exclusion make life difficult."
The struggle for survival continues even now.
Dangerous "Self-determination"
It has been asserted that we should respect the self-determination of those who say they do not want to receive life-prolonging care. There are also many doctors who would like legal immunity to terminate or decline to initiate life support.
"Speaking of medicine as a whole, the historical trend is toward greater patient self-determination. But isnft the decision to die different? The volition of the patient himself or herself is important, but this is not something that one can simply say "yes" or "no" to when healthy."
And the content of medical treatment is strongly connected to social factors such as the treatment fee system.
"The 'piecework' system, in which the number of treatment procedures is added up to calculate payment, has been accompanied by excessive treatment. In recent years 'lump sum' pricing has increased for examinations, intravenous drips, and even prescription medication, and this has meant that not performing procedures is financially advantageous for hospitals. To see only excessive treatment is an out-dated perspective."
In Japan there are many people who do not want to place a burden on their family or on society. If they decline to prolong their lives for this reason, can this really be described as the wishes of the patients themselves?
"How patients feel when that time comes differs depending on whether they are receiving sufficient nursing care and whether there are people who are there for them. On the other hand, when well-respected figures talk about 'the correct way to die' and laws are passed this can exert social pressure."
While it may be called "self-determination", it will inevitably be influenced by society and surrounding circumstances.
Life Depending on the State
ALS (Amyotrophic Lateral Sclerosis), an intractable nerve disease, gradually renders all muscles in the body incapable of movement, and as it progresses patients become unable to even breathe under their own power. Roughly 30% of patients choose to be kept alive by a ventilator. Prof. Tateiwa has collected records of the experiences described by these patients.
"I also read writings by a person who had been completely unable to communicate for two years before beginning to converse using a device that reads brainwaves. It was not a record of extreme suffering; the patient described enjoying seeing scenery and hearing voices. If left unattended this existence would be unbearable, but with empathetic care this may not be the case."
There are also many people who say they would not want to go on living for a long time if they had dementia.
"I understand their fear, but if this happens, is there a life in that state? It is a very fine line between denying this and viewing all people with dementia with contempt. You cannot keep the same state forever. You live depending on the state you are in at the time. Isn't this way of thinking also possible?"