Man who died from motor neurone disease addresses committee on assisted dying

A man who died from motor neurone disease addressed an Oireachtas committee through a posthumous video on Tuesday, calling for the introduction of assisted dying in Ireland.

Brendan Clarke, who was from Westport, Co Mayo, and lived in Dublin, died in August, but recorded the video in advance for the committee.

“I just hope that you will make the right decision for people like me,” he said, explaining that he would like the option of assisted dying, because the disease had impacted his health to the point that he “cannot live like this. It’s not a life I want to live”.

Assisted dying was not an easy decision, but with “my condition”, it was, he said, appealing to the committee to give people that choice.

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Mr Clarke’s nieces Sarah and Tara were present beside him in the video, which was recorded at his home in Dublin.

Speaking in support of her uncle in the video message, Tara said: “You’ve had such a big and wild life, and I’ve just loved hearing all about it and being part of it. It’s been heartbreaking to watch you lose control of even the simplest things”.

Mr Clarke had his autonomy taken from him in the weeks before his death, and though he had once been the “life and soul of the party” and travelled widely, he was at that point unable to make a slice of toast, his nieces said.

“I consciously support you having made this decision because you have always known your own mind,” Sarah added.

Deputy Michael Healy Rae described the video as “very powerful” and thanked Mr Clarke and his family for sharing it.

The meeting on Tuesday also heard from the Irish Hospice Foundation (IHF), the Irish Association for Palliative Care (IAPC) and Hope Ireland.

Some 74 per cent of Irish adults would prefer to die at home, but only 23 per cent will do so, the IHF said.

Hospitals remained the most common place where 44 per cent of people will die, 23 per cent of people will die in a nursing home and 8 per cent will die in a hospice, the organisation said.

The IHF told the committee that access to timely palliative care was associated with improved quality of life, and the percentage of people dying in Ireland who will require palliative care was projected to increase by up to 84 per cent by the year 2046.

“However, these figures only account for people in their last year of life and many people will be living longer with complex needs, therefore are likely to need longer-term palliative care. While availability and access to palliative care services has been increasing, access is uneven and there are still some regions without an inpatient Specialist Palliative Care unit”.

There was a need to focus on strengthening access to primary palliative care and generalist palliative care, the IHF said, adding, “access to care can be improved through expanding the knowledge on end-of-life care across different professionals and care settings.”

The committee on assisted dying is now half way through its hearings and will make a report next year. Its first meeting was held in June, with sitting politicians tasked with deciding whether to recommend legislation or not.