Wicklow man who fought for wife to have assisted death heralds ‘forward-thinking’ Oireachtas decision

Arklow resident Tom Curran fought a lengthy court battle challenging the ban on assisted suicide during his wife Marie Fleming’s harrowing battle with multiple sclerosis and has campaigned tirelessly for change since she died in 2013.

He was one of four people to give personal testimonies to the committee last October, sharing his and Marie’s experience, and those words have now helped bring about action, which Mr Curran has heralded as “forward-thinking”, while admitting it was a surprise to see such a decision so soon.

During a vote in March, the committee on assisted dying decided to recommend that assisted suicide should only be allowed where a person is diagnosed with a disease, illness or medical condition which is incurable and irreversible, advanced, progressive and would cause death within an expected six months.

In the case of a neurodegenerative disease, illness or condition, the expected time to live could be 12 months, with the person's illness having to be causing suffering that cannot be relieved in a manner that the person finds tolerable.

Although the release of the Oireachtas committee report on assisted dying was somewhat overshadowed by Leo Varadkar's resignation, announced earlier that day, the watershed moment was celebrated by assisted-dying campaigners across the country.

Outlining his desire to see the recommendation acted upon, Tom said he hoped the drafting of new legislation would be championed by a political party ahead of the next general election.

“It is a recommendation, and I suppose the positive part about it is that the committee was set up in the first place,” Tom began.

“It has taken them 10 years to act on the Supreme Court’s advice to do something about it, and to be honest, I was pleasantly shocked at their recommendation.

“I thought it was something they would suggest looking at in the future, not necessarily right now, and was expecting ‘Ireland isn’t ready’, or that a citizens assembly would be set up to push it further down the road, which could still happen.

“Fifteen years ago, when we started campaigning for Marie, the thinking was that this would never happen here, not in a deeply religious place like Ireland.

“The thing that I am realistic about now is that they are just recommendations and don’t have to be acted upon,” he continued.

“What I would hope is that one of the government parties, or even jointly, would take on the role of getting it through, drafting legislation and recognising that they set up the committee and the committee have recommended it.

“It’s not a priority at the moment. It’s a controversial issue, and they wouldn’t know whether it would gain or lose votes, so no one will touch it until the start of the new government. The chance of it being acted upon before the next election is nil.

“All I can hope for is that they take this seriously.”

With many Irish citizens travelling to the Dignitas and Pegasos voluntary assisted dying facilities in Switzerland each year, Tom said that the Swiss system, which has been in place for decades, could be easily replicated by Irish health authorities.

“As I said before the Oireachtas committee, every other assisted dying system seems to be criticised, including the Dutch, Canadian, Australian, Belgian and Luxembourg ones, but no one ever criticises the Swiss system because it works – it was the first legislation brought in and has never needed to be changed,” Tom explained.

“Their clinics don’t require the involvement of medical professionals, although they are involved to the extent of issuing a prescription for the drugs. When the legalities are all formalised, a request is sent to the local doctor and the drugs prescribed.

“One of the things that surprises me is that the majority of people who travel to Switzerland are Americans, because if they don’t live in the states assisted dying is legal in, they can’t access it.

“One of the clinics I would have plenty of contact with is Pegasos over in Basel, and I know of nine Irish people who travelled there last year and two more this year.

“For a local person in Basel, it’s a normal procedure, and the cost of the drugs is less than €100, but for non-nationals, the procedure itself costs about €10,000, not counting the cost of travel etc., so there is an element to it that you can only die if you have the money to do it. That those Irish people go to that extent means they are determined.

“Now, if we were implementing it for ourselves, we wouldn’t be under any obligation to provide the service to non-nationals,” he added.

“We wouldn’t even necessarily need clinics, and the drugs could be administered by a nurse or paramedic in the person’s house, allowing them to die at home, with their loved ones in dignity, and without the huge financial burden.

“At the last session of the Oireachtas committee, senior officials from the HSE and Department of Health were present and had no objection to legislation, and seemed more concerned about how it would be implemented and whether they would have the responsibility.

“It almost sounded like they were expecting it to happen, which was very promising.”

Although thankful for the Oireachtas committee recommendation, Tom said that the 12-month qualifying time frame for citizens with neurodegenerative diseases remains a sticking point and would have excluded his late wife from accessing the service.

“The thing that keeps coming up, particularly in Ireland, is this time limit of six or 12 months,” Tom commented.

“When we went to the High Court, they asked Marie’s neurologist for a report on the state of her MS, but also, what his idea was about her life expectancy.

“He said, and it's commonly said, that with a disease like MS, Motor Neuron Disease or Parkinson's, they can’t possibly put a time limit on it – it could be two weeks, two months or two years.

“Marie moved from relapse and remitting into progression, which was slow for the first couple of years and then very rapid. The thing causing the most problems was her swallowing and breathing, and there was every possibility she was going to have to be put on peg feeding and would have to breathe artificially.

“That was something she didn’t want. What quality of life does a person have when they’re just lying there, unable to move, being fed and breathing through a tube?

“She only had her brain, her mouth and her eyes towards the end, and she couldn’t physically travel to Switzerland or swallow the solution of drugs, which was our case for the changing of legislation and the challenging of the legality of suicide – which was upheld.

“The point is, that 12-month window is just not long enough, and Marie wouldn’t have qualified under it.

“That is the part of the Oireachtas committee recommendation that I have a problem with. Everyone should be entitled to the choice.”

Among the points raised at Oireachtas committee assemblies in opposition to assisted dying legislation were its impact and interaction with palliative care systems and that any such legislation might encourage more Irish citizens to end their lives – assertions Mr Curran dismisses as baseless.

“These are logical fears, particularly when people don’t have any experience of it, but the evidence is there from other countries that assisted dying systems don’t result in a wave of suicides – these are scare tactics,” Tom said.

“There is no parallel between a person with an illness that is going to disable them for the rest of their lives and is not going to get better – it’s a rational, thought-out process.

“You just have to look at other places that have successful assisted dying systems, where there is no correlation between a rise in suicide rates, and institutions haven’t come out shouting against it.

“In terms of palliative care, which was raised at the Oireachtas committee meetings, it and assisted dying are not the same thing,” he continued.

“An awful lot of people I know who have been travelling over to Switzerland have been getting palliative care, but palliative care professionals will openly say themselves that while they’re great at pain management, there is about 10 per cent of pain management that they can’t handle.

“They can make a person more comfortable, and having worked with the carers for years, I think there is a need for more palliative care facilities, but there are also other things like quality of life, eyesight, and mobility that palliative care can’t do anything about.

“When we first let it be known what Marie’s issues were, there were a couple of people in palliative care who objected to legislation, and that’s where this notion comes from, but any that I have spoken to agree that it is a matter of choice and that assisted dying and palliative care can and should work hand in hand.”