Decision to end one’s life extended to 11 rare diseases

Pixabay image for illustrative purposes only
Pixabay image for illustrative purposes only

TAIPEI (CNA) — People in Taiwan can now decide in advance under the Patient Right to Autonomy Act to not have their lives prolonged if they have any one of 11 rare diseases, the Ministry of Health and Welfare (MOHW) said in a statement Monday.

The Act, the first of its kind in Asia, allowed people the right to decide in advance to have a doctor terminate or withhold life-sustaining treatments, nutrition and hydration if they are terminally ill, in an irreversible coma, in a permanent vegetative state, or suffering from severe dementia.

It also applied to people with other diseases considered “unbearable” and “incurable” that do not have any other treatment options.

Now, however, doctors will also be able to follow the same advance instructions for patients with any of the 11 rare diseases listed Monday, including multiple system atrophy (MSA), Duchenne muscular dystrophy, and hereditary epidermolysis bullosa.

The others are Huntington disease, limb-girdle muscular dystrophy, nemaline myopathy, spinocerebellar ataxia (SCA), spinal muscular atrophy (SMA), amyotrophic lateral sclerosis (ALS), cystic fibrosis, and primary pulmonary hypertension (PPH).

The MOHW first publicized the list last November for public discussion before it took effect Monday.

According to ministry data, 11,317 people have signed up to date for the advanced medical care planning process based on the Act that gives them more control over end-of-life decisions.

Shih Chung-liang (石崇良), director-general of the MOHW’s Department of Medical Affairs, said Monday the ministry will review the list annually in March with groups of patients with rare diseases, medical associations, legal experts and other experts to determine if other new rare diseases should be added to the list.

The Patient Right to Autonomy Act, drafted to “respect patient autonomy in health care, 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 took effect three years later on Jan. 6, 2019.