The inclusion of additional diseases to the list of conditions for which Taiwanese can decide in advance not to have their lives prolonged under the Patient Right to Autonomy Act (病人自主權利法) took effect on Monday, the Ministry of Health and Welfare said.
The act, the first of its kind in Asia, gives people the right to decide in advance to have a doctor terminate or withhold life-sustaining treatment, nutrition and hydration if they are terminally ill, in an irreversible coma, in a permanent vegetative state, or suffering from severe dementia.
It also applies to people with diseases considered “unbearable” or “incurable,” as well as 11 diseases considered “rare” by the act, the ministry added.
The new additions are: multiple system atrophy, Duchenne muscular dystrophy, hereditary epidermolysis bullosa, Huntington disease, limb-girdle muscular dystrophy, nemaline myopathy, spinocerebellar ataxia, spinal muscular atrophy, amyotrophic lateral sclerosis, cystic fibrosis and primary pulmonary hypertension.
The ministry publicized the list in November for public discussion before the changes took effect on Monday.
According to ministry data, 11,317 people have signed up for advance healthcare directives, which it said gives them more control over end-of-life decisions.
Department of Medical Affairs Director-General Shih Chung-liang (石崇良) said that every March, the ministry would review the list with people with rare diseases, medical associations, and legal and other experts to determine if other rare diseases should be added.
The act, created to “respect patient autonomy in healthcare [and] safeguard their rights to a good death,” was completed in 2015 and promulgated on Jan. 6 the following year.
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