Dr. Deirdre Madden:

Deputy McLellan asked about the capacity laws. The capacity laws in Ireland are inadequate. They are also offensive. The current capacity law is based on the lunacy regulations from the 19th century and obviously the language of those regulations is very offensive. I was happy to see the recent publication of the assisted decision making Bill, the theme of which is the promotion of autonomy. I like that it clarifies what people working in this area know already, that there is a presumption of capacity. It clarifies in law that this is the case. One starts from the basis that everybody has the capacity to make their own decisions. That is very important. It also ensures Ireland is compliant with the UN Convention on the Rights of Persons with Disabilities. It provides a suite of decision-making options to facilitate the patient's autonomy, while recognising that he or she might need support or assistance or a surrogate decision maker, if necessary.

Two other aspects of the Bill that are very important are the advanced health care directives, to give support to the legal recognition of those, and the extension of the power of attorney laws to health care. Both of those will add to the options that are available to try to facilitate autonomy as much as possible.

I am delighted Senator van Turnhout picked up on the patient as expert. That is very important. She spoke about consent as being choice and control. It is also about capacity and knowledge. We can only exercise that choice and control if we, as patients, are informed. Consent and communication are obviously a process, not a once-off thing. Professor Twomey spoke about the difficulty for clinicians in giving information, asking the patient to say what they have learned or appreciated from the discussion and having them tell one something completely different. That is always a difficulty. There are language and communication difficulties, but these can be circumvented. One can have visual aids, such as pictorial representations of what one is trying to explain. There are many different ways in which one can aid that communication, but it is a process and skills are very important in that.

Senator Burke mentioned two matters in response to what I said. The first related to the do-not-resuscitate position. Bryan Nolan referred to this as well, the expectation of relatives that something should be done. As with all clinical decisions, the welfare of the patient must be first and foremost. It is important we do not allow unethical or inappropriate practices to take precedence, such as slow coding or sham resuscitation, where there is a pretence for the family's sake of providing resuscitation. In my view, that is unethical and inappropriate. The Senator also spoke about the difficulty for staff who are caught in the middle when there is a difficulty with the family. Again, why is there always a tendency to defer to the family, regardless of whether they have been heavily involved in the care of the patient, as opposed to the patient? The staff might have concerns about capacity, which I have mentioned, and there might be legal confusion. They might feel the next-of-kin has some type of legal authority, which they do not. They also do not wish to have confrontation, which is perfectly understandable. They need to have personal strength of commitment to put the patient first. It is all about communication.