End of Life Ireland

End of Life Ireland presentation to the Oireachtais Joint Committee on Assisted Dying

World Federation of Right to Die Societies International Conference 2024

End of Life Ireland (EOLI) Chair Janie Lazar and Committee Member Justin McKenna presented to the Oireachtais Joint Committee for Assisted Dying. This is their presentation.

Thank you Chair and Members of this Committee.

End of Life Ireland appreciates the invitation to be here 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, which draws on our lived experience and our supporters; and to facilitate access to best practice across the global network of Voluntary Assisted Dying experts.

Marie Fleming

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’s 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 means 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 legislation introduced, as the June also REDc poll indicated with 76% of us wanting to see legislation for assisted dying – and not only for the terminally ill. 

Voluntary assisted dying and palliative care, which we fully support, are not mutually exclusive. (They can and do work together, although in 4% of cases PC does not/cannot relieve suffering or pain.)

What people don’t hear enough about is the immeasurable peace of mind that comes with knowing that legislation exists and improves one’s quality of remaining life (whether that choice is exerted or not.

Gaynor French

Gaynor French had metastatic breast cancer and campaigned right up to her death in 2018 at just 48. She said, “If I could control the time of my passing, I would waste no more life being afraid, I could live.”

Every day I talk with dying people, families who have lost loved ones, legislators, medics, 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

Brendan Clarke died in August of MND.  He’d accepted his diagnosis and imminent death, but he strongly believed in choice and spent his last months speaking out in support of Assisted Dying.

Fairness. Respect. Equality. Dignity and Autonomy:  The values in the HSE’s HIQA acronym FREDA  come from a human rights-based approach and would be a vital part of any legislation, and any program operated under legislation. 

Legislation would give individuals the right to be assessed & if deemed eligible; have the option of an assisted death. And would align with the HSE’s guiding principles of ensuring safety & well being of all citizens. 

People who choose to have an assisted death make informed decisions & know that right up to the last minute, they can always change their mind. 

Jule Briese shared her story recently with the Irish Times. Of the Alzheimer’s 4 year journey with her husband Wayne, who chose to have an assisted death. Wayne was determined from the start, that no-one, when he and Jule decided the time was right, be allowed to dissuade him.

To fully understand why having control over one’s death matters, the lived experience must be heard. (And) Dementia cannot be excluded from this conversation. Capacity especially, with regard to the advance directive could also include a path for dementia and neuro-degenerative conditions which Justin could address later in the Q & A.

We’ve seen legislation introduced on complex societal issues; on same sex marriage, abortion, divorce. Not only has Ireland endured; we have emerged as a more pluralist and tolerant country. 

The journey towards legislation for assisted dying in every country is the same… … Irresponsible conflation of societal issues implying that one can just’ Rock Up’ for an assisted death, that it is ‘Death on Demand’, State Sanctioned Murder’, . All beyond contempt, serving only to generate unnecessary fear.   .. because …every jurisdiction has safeguards, strict procedures and oversight committees. 

In conclusion

Do we want, as a society, to continue exporting our problems, as Ireland did with abortion? 

To have people travel abroad like furtive criminals to have an assisted death? Or a loved one risk up to 14 years imprisonment for helping?

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. Thank you Doctor. From a patient’s family.    

For inviting EOLI to contribute, thank you.  

Marie Fleming

Gaynor French

Brendan Clarke

Watch the EOLI presentation here

This is a recording from the Oireachtais Joint Committee on Assisted Dying from November 7th. Please watch from 40 minutes in as the meeting begins in committee.

Click here to read EOLI’s written statements by Janie Lazar & Justin McKenna

Click here to read the Irish Doctor’s Supporting MAiD written statement

Click here to view the Irish Doctors Supporting MAiD Oireachtas session