Taiwan allows patients of 11 rare diseases decision-making power

11/22/2019 09:56 PM
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Taipei, Nov. 22 (CNA) Taiwan's Ministry of Health and Welfare (MOHW) on Friday included 11 rare diseases in the clinical conditions under which the Patient Right to Autonomy Act is applicable, giving those suffering from such illnesses the right to decide whether to continue life support or other treatment.

The Act, the first of its kind in Asia, came into effect on Jan. 6. It offers people the right to decide in advance what medical treatment or health care they accept when they are terminally ill, in an irreversible coma, in a permanent vegetative state, suffering from severe dementia, or in other disease conditions that the authorities determine are unbearable or incurable.

Such patients are entitled to the right to terminate life-sustaining treatment, as well as artificial nutrition and hydration, under the Act.

As part of its implementation of the Act, the ministry included 11 rare diseases in the definition of the disease conditions determined to be unbearable or incurable, after a series of expert meetings over the past year.

The diseases include multiple system atrophy (MSA), Duchenne muscular dystrophy, hereditary epidermolysis bullosa, Huntington disease, and limb-girdle muscular dystrophy.

Other diseases added to the list are: nemaline myopathy, spinocerebellar ataxia (SCA), spinal muscular atrophy (SMA), amyotrophic lateral sclerosis (ALS), cystic fibrosis, and primary pulmonary hypertension (PPH).

Shih Chung-liang (石崇良), director-general of the MOHW's Department of Medical Affairs, said there will a period of 14 days for public discussions, starting Friday when the list was publicized.

He expected the list will become effective in December if no one has other opinions or expresses opposition to it.

More than 1,700 patients will qualify for the rights stipulated in the Act after the inclusion of the rare diseases goes into effect, according to an estimate by groups for patients suffering rare disorders.

Legislation of the Patient Right to Autonomy Act, formed to "respect patient autonomy in healthcare, to safeguard their rights to a good death, and to promote a harmonious physician-patient relationship," was completed in 2015 and promulgated on Jan. 6 the following year.

The Act became effective three years later on Jan. 6, 2019.

(By Chang Min-hsuan and Elizabeth Hsu)


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