Tom Curran: ‘I helped Marie to die according to her wishes’

It’s been a strange and strained two and a half years for Tom Curran who, for almost two decades, shared Marie’s life, her battle with multiple sclerosis, and her fight with the courts in her campaign for the right to assisted dying.

“In some ways, to me it only feels like a couple of months ago. It doesn’t feel like two and a half years because it’s still quite an intense feeling,” says the Arklow man who helped Marie fulfil her plan to die on December 20, 2013.

Earlier that year both the High Court and Supreme Court had rejected Marie’s challenge to the Criminal Law (Suicide) Act of 1993 which decriminalised suicide, but makes it a criminal offence to assist another person to take their own life.

She argued that the law discriminated against people with disabilities because able-bodied people could end their life if they chose, but those, like herself, whose movement was severely restricted, needed help.

Tom, after initial distress at her request, had agreed to help her whenever she decided she didn’t want to deteriorate any further or lose the power to communicate altogether, but both of them knew Tom risked prosecution and up to 14 years in jail if he honoured his promise.

In the end, his loyalty to Marie outweighed his fear of the law, although the latter still leaves him unsettled.

He has only begun in recent weeks to openly identify himself as someone who assisted a suicide and even then it was with reticence.

When Marie died, he announced she had passed peacefully at home in his arms, as she had wanted. No-one publicly questioned the manner of her passing, for which he was hugely grateful, as it enabled him and Marie’s son and daughter, to bury her with dignity and grieve privately without fear of a protracted postmortem and inquest, or a Garda waiting outside the cemetery gate.

But in his work with Exit International recently, Tom travelled to Australia and New Zealand and began to speak to audiences about his personal experiences.

“I knew it would come out eventually and I suppose that was one of the reasons why I was a bit more open about it half way across the world. It had to come out, otherwise, to a certain extent, what Marie fought for is a waste.”

His caution is understandable. The High Court had stated it felt sure that if there was ever a question of whether or not to initiate criminal proceedings, the Director of Public Prosecutions “in this of all cases would exercise her discretion in a humane and sensitive fashion”.

“That was some comfort to Marie to hear that,” says Tom.

“But then last year Dublin woman, Gail O’Rorke, was put on trial in the Dublin Circuit Criminal Court on charges of attempting to assist the suicide of her close friend, Bernadette Forde, who also had multiple sclerosis and died in 2011.”

It was the first prosecution of its kind in the country and although Ms O’Rorke was acquitted on all charges, it left Tom anxious and dismayed.

“I thought after what was said in the High Court that Gail would not have been charged, so it was a bit of a shock that she was pursued.”

Tom has already had his own dealings with the law, initially after his vow to assist Marie became public knowledge in advance of the court case.

“Within a couple of days of that I got a telephone call from a detective inspector from Wicklow saying that they had had complaints and they had to investigate it.

“I was taken in to Wicklow Garda Station on two different occasions and interrogated for nearly ten hours.

“It was courteous but it was intense. They were investigating whether I had put this story out there as a cover for killing Marie for other reasons.

“I kept saying, ‘if you don’t think this is Marie’s idea, come and talk to her,’ but they didn’t. One garda said to me ‘this is not what I joined the guards for,’ but the law is there, and I suppose they were under pressure to do something about it.”

His next encounter with the police was in Scotland where he joined long-time voluntary euthanasia campaigner and founder of Exit International, Philip Nitschke, on stage at the Edinburgh Fringe Festival to present Dicing With Dr Death last summer.

The hour-long show includes a demonstration of what Exit call the ‘destiny machine’ — a computer-controlled device that can deliver a fatal dose of gas while monitoring vital signs so that it shuts off automatically when the user dies.

Not surprisingly, the advance publicity left the authorities nervous.

“The police and council came in to try and close us down during rehearsals,” Tom recalls.

An obstacle course of criminal laws and public safety rules were thrown at them but they successfully negotiated each hurdle.

“Every night before the show, we had a person come along and inspect our equipment and make sure that we were complying. That got us so much publicity, the show was packed.”

Most came purely out of curiosity and heard a mix of campaign history, anecdotes and information from countries were voluntary euthanasia is legal and illegal.

“One of the stories is about a woman who decided to end her life and made her plan perfectly. She gathered all her friends in and she had prepared her speech.

“But she took the Nembutal [the drug of choice in some countries with a legalised right to die] before making her speech and she ended up saying ‘this stuff tastes like shit’ and those were her last words. That actually happened. It does taste very bitter.”

The reviews were almost entirely positive, as they were again in April this year when they took the show to the Melbourne Comedy Festival.

“It did exactly what we wanted. It got ordinary people talking about the subject and finding out more about it,” says Tom.

“Nobody got up and walked out. We got a couple of people who found it distasteful and made that point after the show but the way I responded is that this is a matter that’s happening all the time. Everybody is going to die. Death is not something that people shouldn’t be talking about.

“It’s the only thing that we’re certain is going to happen to us and there are people who want to be in control of that and that’s all this is about.”

TOM says as Europe Co-ordinator for the campaign group, Exit International, he has helped around 200 people take control of their lives by assisting them put together plans to die.

He says they are located in various parts of Europe but are mainly in Ireland and England. “Some people who made plans have died since, but I don’t know how they died. They don’t report back to me for obvious reasons,” he says.

“There are some people who have made plans who I do see regularly because they have become involved in the campaign but there have been some high profile people who don’t want to be seen to be involved so they put plans in place and I don’t hear from them again. There are a few that I would have heard on the news or read in the paper that they had died, and I wonder did they put their plan in place or did they just die.”

He helps them plan to die at home rather than travel to the likes of the Dignitas facility in Switzerland.

“The problem with having to travel is that a lot of people who have gone there have gone before they really wanted to. They had to go before they became too incapacitated to go, but it was sooner than they absolutely needed to go.”

Tom says he turns down many requests from deeply unhappy people who want help making plans because he believes they have other options.

“I’m extremely careful about who I help. I know it’s my own personal judgement rather than a team of experts, but there are a lot of people that I just say ‘sorry’ to and I suggest that you go and talk to your doctor.

“These would be people who were irrationally suicidal. I have almost pleaded with them to make contact with the health or support services.”

Ironically, Tom believes legalising assisted suicide could actually reduce the number of suicides among the general public.

“If it was legal then these people would be approaching their GPs and legally requesting help to die and they would be caught earlier and they would be able to get help to live.”

Living, Tom says, was as much a part of Marie’s campaign as dying.

“For most people, once they’ve put a plan in place, they relax because they’re now in control and they can get on with their lives. In fact, an awful lot of people who put those plans in place die naturally. They die peacefully, they die without worrying. In Oregon [where assisted dying by lethal drug dose is legal] more than half of the prescriptions that are issued are never used.

“It’s like people getting insurance. They’re concerned about a bad death, they’re concerned about not being in control, they’re concerned that their death will be long drawn out, painful and very difficult for the people around them, and once they get that control in their own hands, they relax and get on with living.

“That’s what happened with Marie. When Marie decided not to go to Dignitas, that she’d make a plan here, we got five more years of life together, a wonderful five years.

“It wasn’t easy for Marie but it was Marie’s choice because she was now in control. She was dependent on me, but she knew that she could depend on me. That was like being in control herself.

“It’s put forward that if palliative care was there, then maybe people wouldn’t want to die. That’s a possibility but unfortunately there isn’t sufficient palliative care and also there’s a misunderstanding about what palliative care is.

“Most people think that palliative care only comes in at the last couple of weeks of a person’s life. To me, palliative care is making a person’s life comfortable so it should start when a person is diagnosed with a life-limiting illness, not just in the last couple of days of their life.

“Unfortunately... it’s only available at the end and, in Ireland, it’s almost exclusively available to cancer patients.”

Tom had a long-running battle to try to get palliative care services for Marie, but it was just one of numerous difficulties the couple encountered with the health system.

Marie needed her catheter changed frequently and he was happy to do it for her to avoid trips to doctors’ surgeries and clinics or, in the case of a blockage emergency, to A&E where staff sometimes struggled with the technique.

A local GP agreed to train him up and monitor his early efforts but Tom says that kind of assistance is the exception so he badgered Leo Varadkar when he was health minister for funding to set up a pilot training course for family carers which begins this week and will cover many aspects of care.

“I realised when Marie’s situation was getting worse that the only way she could avoid going into a nursing home was for me to have the skills that were necessary to deal with her illness at home, and there was no proper training to allow people to get that. Hopefully this pilot will be the start of changing that.

“Most people think I go around helping people die all the time but I put more effort into helping people live. To me it’s a matter of choice. If a person wants to live they deserve every help to do that and to be as comfortable as possible while they’re living.

“But if they want to die, that’s a legitimate choice as well and they should be given the same level of assistance and acceptance to do that.”

Another addition to Marie’s comfort was the use of marijuana, initially provided to her by a sympathetic garda from small seizures that were due to be destroyed, but later grown by Tom himself.

“The two things that kept Marie alive, that gave Marie the will to live, were illegal. It’s a fact. Marijuana and her plan for assisted dying kept her with us and they were illegal.”

SINCE Marie’s death, the law has been changed to allow for a drug containing cannabis plant extract to be sold here for easing MS symptoms, but wrangling between the supplier and the Department of Health over the price means it is not yet available to patients.

Tom supports the campaign for the wider legalisation of cannabis for medical use, but he’s not expecting a breakthrough on that front any time soon.

Neither is he holding his breath for progress on the Dying With Dignity Bill which he helped draft and which independent TD John Halligan introduced as a private members bill last December.

Just hours before he was appointed to the position of junior minister last month, Mr Halligan was addressing a Dáil debate on Dáil reform, and expressed frustration with the haphazard way in which new legislation gets — or is denied — an airing.

“I understand a controversial bill I submitted on assisted suicide has been lost in the lottery system for the past two months,” he said. “I am not sure where it is.”

Mr Halligan’s promotion may mean the bill gets more prominence but Tom believes it will struggle under the current government.

“The way the Government is now, they will not want to tackle anything that is in any way controversial. This will be the quietest Dáil for a long time because anything controversial could bring it down.

“If they do touch it, I’d say it will be put to the people in a referendum so that they don’t have to make a decision themselves. The same as the marriage equality referendum, they abdicated their responsibility and put it to the people.

“This doesn’t need a referendum. The courts said the Oireachtas was completely free to change the law, that there would be nothing unconstitutional in doing so,” he says.

“But if they are afraid to make the decision themselves, I would have no objection to having it put to the people because I believe they would back it once the safeguards were built in to protect vulnerable people.”

A number of opinion polls suggest the same, with 54% of respondents to a poll last year saying they would consider assisting a family member to die, and higher numbers willing to support GP-assisted deaths.

“I don’t know when it will happen but the law will be changed eventually,” Tom says. “But, in the meantime, there are people who need help, there are people like Marie who made the decision for themselves and, unfortunately, to help, the law has to be broken.”