Jillian van Turnhout (Independent) | Oireachtas source

-----I want to acknowledge the support of NUIG Centre for Disability Law and Policy and Tallaght Trialogue. While most people simply require recognition of their legal capacity and support to express their will and preferences there will still be a small minority of individuals who are not expressing a will and preference in a manner that others can understand. The Bill must establish the lawful response to such circumstances. However, I do not believe that a functional assessment of a mental capacity, and a subsequent denial of legal capacity, is the correct response to these difficult situations. A person in a coma or in a minimally conscious state, for example, will not be communicating their will and preferences to others and may not have made their wishes known in advance through an advanced health care directive or granted a power of attorney to anyone in respect of their relevant decision.In these circumstances decision making assistants, co-decision makers, decision making representatives, attorneys or designated health care representatives may need to make a decision on the relevant person's behalf in accordance with their best interpretation of his or her will and preferences. While the Bill does require all interveners to respect the person's will and preferences as part of the guiding principles included in section 8, further reference to the concept of best interpretation of will and preferences is needed for the hard cases in which it is very difficult to tell what a person's wishes are. The term "best interpretation" needs to be defined in section 2 of the Bill to guide those in the supportive roles I have outlined. Best interpretation of a relevant person's will and preferences means taking into account past express preferences, where known, and includes knowledge gained from family and friends and other evidence available. Best interpretation can also be arrived at in seeking to communicate with the person in every possible way, including by using, where appropriate, assisted and augmentative communication, facilitated communication, signs, gestures and total communication, all of which are noted in the regulations and code of practice.

The use of best interpretation will rarely be an easy task. However, the best interest determinations used currently are similarly difficult in these circumstances. The provisions of Article 12 of the UN Convention on the Rights of Persons with Disabilities are merely shifting these difficult decisions from focusing on judgments existing outside the individual to the individual's own will and preferences. That is why I am trying to insert a definition of best interpretation. We do need to deal with the hard cases, too.