Ireland seeks to change informed medical consent for people with intellectual disabilities

From The Irish Times August 5:

The government has been urged to introduce urgent changes to the law to resolve decision-making problems facing parents and carers of people with intellectual disabilities who need medical attention. At present, medical or surgical procedures cannot be carried out without the informed consent of a patient over 16 years of age.

However, the law is not clear on what constitutes informed consent, or what happens if the person is not capable of giving their consent.

The only system for decision-making for adults under Irish law is the 140-year-old Lunacy Regulation (1871) under which a person becomes a ward of court. However, once this happens, that person loses the right to make any decisions about their person or property.

Inclusion Ireland, the national umbrella group for people with intellectual disabilities, has said this is "totally unsatisfactory" and that major gaps in the law need to be addressed.

It said that the lack of clarity over intellectually disabled people's rights means there is widespread confusion over what happens when family members disagree with a doctor, or each other, over what is the best form of treatment. As a result, it is the responsibility of medical professionals to make a final decision.

Among the gaps in the law it has said it wants addressed is the introduction of a formal system to assess whether a person has the capacity to consent to medical treatment. It has also called for the introduction of a legal basis for a person to give consent on behalf of a person with an intellectual disability to medical treatment, although this is often done informally.

"It is clear that Ireland requires a form of supported or substitute decision-making law. This means that the present system will have to change and that an adult with an intellectual disability who does not have capacity can have an appointed person to assist him/her make decisions," a spokesperson for Inclusion Ireland said. Inclusion Ireland is today publishing an information booklet to provide parents and families with information on current practice in this often complex area.

The Government said it is preparing a new Bill on Mental Capacity and Guardianship, which follows on the recommendations of the Law Reform Commission report on vulnerable adults. It is expected to include statutory recognition to informal decision making by carers and professionals. This would preserve the role of families and carers in the lives of adults "who lack capacity by giving a statutory basis to informal decision making".

Another provision of the proposed law is the appointment of a personal guardian. This individual would deal with matters in relation to the property, financial or personal affairs of the individual. A major push towards greater supported and assisted decision making is being driven by the UN Convention on the Rights of Persons with Disabilities, which the Government has signed, but not yet ratified.

This convention states "that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life". The Article continues that countries which ratify it should ensure that any measures relating to the legal capacity of people with disabilities provide appropriate and effective safeguards to prevent abuse.