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"Considering Assisted Decision Making from the Perspective of Equality with Others"

Yui Hasegawa; Hiroki Okabe; Miki Nishida; Naoyuki Kirihara
Date: 2016/09/22 (Thu.)
East Asia Disability Studies Forum 2016
Place: Colloquium, Ritsumeikan University Osaka Ibaraki Campus


last update:17 Sep 2016

◇The Situation in Japan
★Decision-Making Assistance Premised on the Adult Guardian System

・Adult Guardianship System
In order to protect impaired persons who do not possess sufficient decision-making abilities for reasons of dementia, cognitive impairment, psychological impairment etc., this system appoints individuals to assist the daily lives of those impaired persons.

・Act Regarding the Promotion of the Use of the Adult Guardianship System
Promulgated on April 15, 2016 and enforced on May 13, 2016.
In addition to evaluating the state of assistance in 'decision-making in health care and nursing', this Act also clarifies the necessary measures to be taken.

★This is a system for proxy decision-making made on behalf of the impaired person by a proxy or guardian.

◇Individuals impaired by ALS
★Impaired individuals gradually lose the ability to communicate their will
ALS:Amyotrophic Lateral Sclerosis
・Movement of the body gradually becomes impossible, and communicating one's will becomes more difficult.
・If the impaired person's intentions are not interpreted by another, they cannot communicate their will.
・As the symptoms progress, the means of communication are lost.
★The impaired person can only rely on the discretion of another to interpret their intentions.

◇ALS and the Adult Guardianship System
The impaired person cannot indicate their intentions.

The impaired person cannot exercise their legal abilities.

A legal proxy through the Adult Guardianship System is required as support.

◇Convention on the Rights of Persons with Disabilities
Supported Decision-Making
・Upon deeming the impaired person's decision-making legally valid, support is then given for the equal exercise of legal abilities.
・Development of a diversity of communication means.
・Advanced planning.

◇Conditions Facing ALS Patients
Despite having the will, many are left unable to have their intentions interpreted.

Through a proxy or family members:
・Disposal of assets
・Hospitalization or change of residence against the will of the impaired person
・Denial of life-depending health care
○Advanced Living Will regarding a ventilator
'I refuse the use of a ventilator.'
★When this becomes an issue of choice, impaired persons become unequal to others.

・Depending on their physical condition, even if impaired persons make various decisions, they have no means of communicating them, or communicating changes regarding these decisions, and must entrust these decisions to another person.
・With the adoption of the framework of the Adult Guardianship System in Japan as it stands, even if assisted decision-making is sought, the lives and lifestyles of ALS patients will be adversely affected by approaches premised on the idea of 'death with dignity'.
・Abolishing the framework of the Adult Guardianship System would require the guarantee of survival through the enrichment of assistance grounded in Articles 10 and 19.

○For patients, what is awful about this disease is not only its symptoms but also having to choose between living and dying.
○They want their current will to be understood, not only their will as it was in the past.

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