Professor Jocelyn Downie:

I am glad the Deputy has come in for a second round of questions because I had some thoughts when he asked something relating to this earlier. We are getting caught up in some of the internal debates in Quebec, Canada, as we face mental disorder MAID potentially coming in March 2024 and the disability work. Ireland is in a different place, so I want to offer a couple of ideas about lessons learned that do not relate to this disagreement the committee is seeing today. If, for instance, Ireland decided the law would be much narrower than that in Canada, or even broader, one of the lessons is that it should clearly define the terms in its legislation. If they are vague, that will cause confusion and controversy.

The second lesson is that Ireland should work with clinicians in advance to ensure the wording is understandable to them, because they are the ones who are going to have to implement it. Our Government put in a reference to a natural death having to have become “reasonably foreseeable”, and clinicians reacted by asking what on earth that meant, which got everybody off on the wrong foot. Work needs to be done with clinicians such that the Government should specify the boundaries it wants to draw from a public policy perspective and decide how it should express them in a way that clinicians can implement them in clinical practice.

Furthermore, it should ask them whether the way the system is being set up is clinically feasible and whether they foresee problems in how it is framed. As a concrete example, our law initially said express consent had to be given immediately prior to the provision of MAID. That is understandable from a philosophical and ethical perspective, but it created a need for people to die earlier than they otherwise wanted to because they were fearful of losing capacity. A woman named Audrey Parker was in this circumstance.

She had brain cancer. She wanted to try to live through Christmas and the new year but she was fearful of losing capacity. She was fully eligible. She met all of the eligibility criteria because she had advanced breast cancer that had become brain cancer and so on. She wanted to try but she was at risk of losing capacity. She raised this issue and the Government listened. It realised that this was not related to the broad request-for-MAID issue but to a more narrow issue of people dying earlier than they want. She died on 1 November instead of trying to get through Christmas and the new year because she was fearful of losing capacity and therefore, of losing access to MAID. The Government listened and included something called the final consent waiver. Under this waiver people who are fully eligible for MAID and who are what is called track 1, that is, their natural death is reasonably foreseeable, can make an agreement with a clinician that if they lose capacity, they will get MAID. Ms Parker could have said that if she lost capacity before Christmas, she wanted MAID but if not, she would try to live longer. That is an example of a case where clinicians could have anticipated the problem and helped the politicians to draft the legislation in a way that would have avoided that problem that nobody wanted. Quite apart from all of the debates about disability, mental disorders and so on, it is important to have that communication so that the Legislature can most effectively implement the parameters that it decides it wants to have.

My final piece of advice relates to communication. It is important for the committee to communicate with the public about what is going on in other countries and the reasons for the decisions it is making. It is very important to go to the primary sources. What this committee is doing is interacting with groups of people who are presenting to it what the primary sources are saying. The committee should go to the primary sources itself and then it will be able to articulate to the public its reasons and the evidence behind its decisions, not by referring to me or to any of the other witnesses today but to the primary sources of evidence about what happens when a country proceeds with MAID.