August 2008

INCLUSION IRELAND launch Medical Decisions Booklet

 

Dr Mark Hamilton of RTE 1 Series “How Long Will You Live” will this morning launch an information booklet for parents and families of people with an intellectual disability Who Decides & How? - Making Medical Decisions

 

         

Decision making problems often arise for parents/carers of people with intellectual disabilities who are aged over 16 years and require a medical procedure.  All persons in Ireland have a right to give consent to medical decisions from the age of 16.

Medical and surgical procedures may not be carried out without the informed consent of the patient. The law however is not clear on what constitutes “informed consent” or on what is to happen if a person is not capable of giving consent. The most recent Medical Council Ethical Guide (2004) states that:

“If a person with a disability lacks the capacity to give consent, a wide ranging consultation involving parent/guardian and appropriate carers should occur”

The guidelines do not state what should occur if the family members disagree with the doctors or each other on what is the best form of treatment. At present it is the responsibility of the medical professionals to make a final decision. Inclusion Ireland considers the current situation be totally unsatisfactory. There are two major gaps:

1. There is no formal system for assessing whether or not a person has the capacity to consent to medical treatment  (Unless there is an application to have the person made a Ward of Court under the Lunacy regulation (Ireland) Act 1871)

2. There is no legal basis for a person to give consent on behalf of a person with an intellectual disability to such treatment though this is often done informally 

The Government  is  preparing a new Bill on Mental Capacity  and Guardianship which  follows on the recommendations of the  Law Reform Commission Report  on Vulnerable Adults, 2006  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 the decision. 

Inclusion Ireland, in launching this booklet wishes to  provide parents and families with  information on current practise in this difficult and complex area, as Dr John Hillary, a former  President of the Medical Council,  states in his introduction to the booklet  “ to be effective advocates people need information”.

 

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