last update: 20151127
■People with ALS resigned to wearing mechanical ventilators
ALS
・Burden on families
・Anxiety about the future
・Wanting to die naturally in comfort
・Not wanting to die
・Once the ventilator is on, it never comes off
・Is there a reason to live?
■Being able to determine how one dies in the future
“I won’t go that far just to stay alive.” The meaning of life before going on a mechanical ventilator
・Living with a mechanical ventilator is seen as living with a disease, and having little value when compared to life as a healthy individual.
Worrying about the care burden placed on the family
・In order to help a patient live, an enormous care burden is placed on a patient’s family, and the patient begins to regret the fact that they are still alive.
Once the ventilator is on, it never comes off
・Patients are conscious of the fact that deciding to wear a mechanical ventilator is an enormous, irreversible decision and they end up hesitating to make that choice.
■Issue Awareness and Objectives “Mechanical ventilators as a positive way of living for ALS patients”
・ALS patients who choose to use mechanical ventilators can live long lives, but many people give up on the idea of doing so.
・Less than 30% of Japanese ALS patients use a ventilator, and part of the reason for this is that many ALS sufferers choose to die in their own way.
Here we subject the negative impressions regarding mechanical ventilators to critical review from the perspective of ALS patients.
Through this process, we hope to encourage ALS patients to take a more positive view of living with a mechanical ventilator, and potentially make using one a choice they are willing to make.
■From the lives of ALS patients who use mechanical ventilators
・Mechanical ventilators can be seen as a form of medical treatment and care if we consider that they must be inserted, adjusted and managed by physicians. However, if a person with ALS were able to manage the operation of a ventilator, it would become a tool for living.
・To get a sense of mechanical ventilators as tools for living and for the role they can play, it is vital to make use of social systems such as home-visit care for people with severe disabilities, the long-term care insurance system, and public assistance.
・Long-term nursing care or home-visit care for people with severe disabilities, which gives patients the chance to leave the house, can have a particularly powerful effect on helping patients gain control of their own lives.
■Issues that become visible with knowledge of mechanical ventilators
Mechanical ventilators as tools to stay alive.
・Mechanical ventilators are tools for both living and survival.
・However, another person is needed to operate and manage them.
・In order to request treatment care from a helper who is not a care provider, a helper must first be found, and then a training system and a relationship that allows for such care must be built.
・All of this has a strong influence on why people would refuse the restrictions brought about by living with a mechanical ventilator.
・In addition, social systems are lacking.
■The “Medical Model” and the “Social Model” as frameworks for awareness
＜Medical Model＞
・In comparing life with a disease or disability to a life of health, it denies the validity of life with disease or disability.
・In denying individual lives, it searches for solutions to a battery of issues.
＜Social Model＞
・Wearing a mechanical ventilator and living with a disease is still living as a part of society.
・By solving social issues, survival becomes possible.
According to people I have met who use mechanical ventilators, the changes caused by living with a mechanical ventilator have restricted how they live, and are the reason for the negative images surrounding ventilators.
In these circumstances, the social systems designed to provide some life security have been shown to be incapable of achieving this goal, and this has continued to fuel the negative image people have of mechanical ventilators.
This suggests that ALS patients are perhaps making their own interpretations and determinations by taking in the oppressiveness of the Medical Model and creating their own framework of denial.
The criticism in this assessment could bring about change through the Social Model framework and social security, which do not deny the existence of patients.
＊作成：HASEGAWA Yui・KIRIHARA Naoyuki