Ms Janie Lazar:

End of Life Ireland greatly appreciate the invitation to present today and also the naming of this committee. Language matters and assisted dying is not the same as suicide. We want to work with Government and contribute to the enactment of legislation that draws on our lived experience and that of our supporters and to facilitate access to best practice across the global network of voluntary assisted dying experts. Everything begins with a conversation. Awareness of the work of this committee and the topic of assisted dying is important and deserves as wide an audience as possible. It is why we run public meetings with representatives of Irish doctors who support patient choice and with Tom Curran, whose journey with his life partner, Marie Fleming, and the outcome of their Supreme Court case mean the Oireachtas has the authority to legislate for assisted dying. Our work as a volunteer-led advocacy group highlights the need for proper information and a strong will to see this legislation introduced, as the June Red C poll also indicated, with 76% of us wanting to see legislation for assisted dying, and not just for the terminally ill.

Voluntary assisted dying and palliative care - which we fully support - are not mutually exclusive and they can and do work together, though in 4% of the cases, palliative care does not and cannot relieve all suffering and all pain. People do not hear enough about the immeasurable peace of mind that comes with knowing legislation exists and improves one's quality of remaining life, whether that choice is exerted or not. Gaynor French, who had metastatic breast cancer and campaigned right up to her death in 2018 at the age of just 48 years, said if she could control the time of her passing she would waste no more of her life being afraid; she could live.

Every day I talk to dying people, families who have lost loved ones, legislators, medics and representatives from advocacy and allied groups. Alongside the stories of suffering and difficult deaths, there are many stories of good and beautiful deaths, but without legislation the alternatives are grim. Brendan Clarke died of motor neurone disease, MND, in August. He had accepted his diagnosis and imminent death, but he believed strongly in choice and spent his last months speaking out in support of assisted dying. Fairness, respect, equality, dignity and autonomy are the values in the HIQA acronym FREDA. They come from a human rights-based approach and would be a vital part of any legislation and indeed any programme operated under the legislation. Legislation could give individuals the right to be assessed and, if deemed eligible, have the option of an assisted death and such legislation would align with the HSE’s guiding principles of ensuring the safety and well-being of all citizens.

People who choose to have an assisted death make informed decisions and know right up to the last minute they can always change their mind. Jule Briese recently shared with The Irish Timesthe story of her four-year Alzheimer’s journey with her husband Wayne, who chose to have an assisted death. Wayne was determined right from the start that no one would be allowed to dissuade him when he and Jule decided the time was right. To fully understand why having control over one’s death matters, the lived experience must be heard. Dementia cannot be excluded from this conversation. Capacity, especially with regard to the advance healthcare directive, could also include a path for dementia and neurodegenerative conditions, which Mr. McKenna can address later in the question-and-answer part of the meeting.

We have seen legislation introduced on complex societal issues, including same-sex marriage, abortion and divorce. Not only has Ireland endured, we have emerged as a more pluralist and tolerant country. The predictable journey towards legislation for assisted dying in every country is the same. It is said to be irresponsible and a conflation of societal issues and it is implied that one can just rock up for an assisted death, that it is death on demand, state-sanctioned murder and beyond contempt. This serves only to generate unnecessary fear because every jurisdiction has safeguards, strict procedures and oversight committees.

Do we as a society want to continue exporting problems, as Ireland did with abortion, or to have people travel abroad like furtive criminals to have an assisted death or a loved one risk imprisonment of up to 14 years? We do not. Without legislation nothing changes. “Thank you, doctor” are the words most often heard from a patient about to have an assisted death. The same is true of the patient’s family. I thank the committee for inviting ELOI to contribute today.