ALS patient woman "miserable, euthanasia" Father "I wanted to say a word"

Woman with ALS "Worry, euthanasia" Father "I wanted to say a word" July 23, 19:19

At the request of a female patient with an intractable disease, ALS, two doctors were arrested on suspicion of part-time murder, allegedly murdered by visiting a home in Kyoto to administer the drug. As the symptoms progressed, the woman posted on Twitter, "Humiliating and miserable days continue all the time. I can not bear a moment. Please euthanize."

According to my family, the female patient who died in this incident was born in Kyoto City and started working at a department store in Tokyo after graduating from university.

After that, I traveled to the United States to study architecture at a university, and after returning home, I worked at a design company in Tokyo.

However, about 10 years ago when I was in my 40s, I suddenly felt uncomfortable when I tried to cross the road with my feet, and when I visited a hospital, I was diagnosed with ALS = amyotrophic lateral sclerosis. is.

After that, I quit my job and returned to Kyoto, where I lived alone in an apartment with the help of a helper.

At the beginning, I sometimes got out in a wheelchair, but gradually my muscles in my whole body stopped moving, and before I died, I used the line of sight to enter letters on the computer and show letters on the dial. , I was trying to communicate.

As the symptoms progressed, in September last year, a woman posted on Twitter, saying, "Humiliating and miserable days continue all the time. I can't bear a moment. Please euthanize."

Father "Difficult decision for daughter..."

At NHK, I have been interviewing the father of a deceased woman. In response to the interview before his arrest, the father said, "My daughter was so depressed and shocked why she got sick. I didn't know what to do with the illness I heard for the first time, so I searched in the dark. I think it was tough because my head was solid," he recalled.

Regarding the fact that the daughter seems to have asked the doctor to kill him, he said, "Of course I stopped if I knew. I would like to respect my daughter's feelings, but I think that it was good for this, and it seems that it is a complicated feeling. I am telling myself to tell myself.

On the 23rd, the father told the interview after the two doctors were arrested, "I was relieved to be caught. I finally made a break in my daily life," he said. It's a complicated feeling. My daughter also outsources the murder and I don't blame the criminal unilaterally. I think it was a tough decision for her."

"When I was about to die, I wanted to say a word. I wanted to make eye contact. I wanted to hold my hand. I never dreamed that something like this would happen suddenly. That is the most disappointing thing." ..

Current status and issues of ALS patients

ALS = amyotrophic lateral sclerosis is a progressive disease in which the motor nervous system is impaired, and the limbs, throat, and muscles required for breathing gradually stop working. The cause of onset is unknown, there is no underlying cure, and it is designated as an incurable disease.

According to the patient group, there are more than 9,800 people nationwide who were diagnosed with ALS and received a disability certificate as of the end of March last year.

The speed at which the symptoms progress varies from person to person, but when it becomes difficult to breathe by yourself, it is necessary to wear a respirator. Even after being unable to move the body, it is said that sight, hearing, body sensations, muscles that move the eyes, etc. are less likely to be damaged, and we have conversations such as by following the gaze of the dial.

However, depending on the patient group, there are many people who do not have a ventilator because they have no hope for the future or consider the burden of family members who assist even if they want to live. ..

Patients can take advantage of public insurance systems and welfare services to receive medical care and assistance from helpers, but as the medical condition progresses, 24-hour, 365-day care is required, while helpers are available in some areas. The number of patients is not sufficient, and there are issues with the system that supports medical treatment.

A major issue is how to support the society, including the family, so that patients will not give up living and live with motivation.

Patient group "Have you finally got up?"

Regarding this incident, Hideaki Masuda, who is the chairman of the ALS Association Kinki Block, which consists of ALS patients and their families, and who also suffers from ALS, said, "At the same time, at the same time, I'm surprised that a woman wants to be euthanized. It is no wonder that I have spoken with great hope many times. In a society where it is natural to live, we are always sandwiched between life and death. The society where severely disabled people such as ALS live It's not easy to admit, neither is I nor she. I can't forgive the doctor who killed her. We live and face the problems and anguish of dignity and euthanasia. We can't solve it by form, and I don't want us to deny our lives."