The Dying with Dignity Bill brought forward by People Before Profit TD Gino Kenny was debated in the Dáil on Thursday and will be voted on in the coming week.
The Government is proposing an amendment to the Bill that would allow a special Oireachtas committee to look at the issue.
If Kenny’s bill were to pass, a person with a progressive terminal illness would be able to get medical assistance to end their life, albeit in a very controlled and monitored set of circumstances.
The public mood on this issue appears to be changing. Last year, an Amárach/Claire Byrne Live poll suggested that 55 per cent of Irish people were in favour of legalising "assisted suicide". Recently the health campaigner Vicky Phelan, who has a terminal illness, spoke in favour of the Bill. We speak to four other people who have thought deeply about this issue.
Tom Curran
In 2013 Marie Fleming, with the support of her partner Tom Curran, sought a change in the law. Fleming suffered from multiple sclerosis and was increasingly debilitated and in severe pain. She argued that the decriminalisation of suicide, but not of assisted suicide, discriminated against disabled people who were unable to arrange their deaths without help.
Both the High Court and the Supreme Court rejected her challenge. She died in Curran’s arms at home the same year. Curran later helped write John Halligan’s rejected 2015 Dying with Dignity Bill.
He was shocked when Fleming first suggested this route a decade before her death. “But Marie was a very intelligent person. It wasn’t something that was a throwaway thought, it was something that she had given serious thought to . . . And I realised that, as far as I was concerned, she was right, that people should have the right to do that.”
Marie wanted to die at home and he was there to help her, so she took the case selflessly, he says, to help other people. “And she helped to get rid of a lot of that stigma . . . Being the person who breaks the silence on any of these issues is very difficult. She had incredible strength.”
What’s his position on the issue now? “It’s not a medical issue. It’s a human right, that people should have the choice about their own end of life.”
He receives two or three enquiries a month from Irish people but thinks that loved ones are reluctant to speak openly for fear of prosecution.
The Bill being brought forward by Kenny is very similar to Halligan’s. Both were, in Curran’s view, “quite restrictive” but he understands why. “The bulk of the Bill is really about putting safeguards in place.”
“Would Marie have qualified for it at all under this Bill? I don’t know.”
Desmond O’Neill
Desmond O’Neill, professor in medical gerontology in Trinity College, disagrees with any law that decriminalises assisted suicide. He dislikes the phrase “assisted dying”. “We are really talking about assisted suicide, and I’m concerned about the hijacking of the phrase ‘death with dignity’.”
He thinks there’s been a “a kind of liberal artistic fondness for what seems to be this elegant, simple solution . . . In Clint Eastwood’s Million Dollar Baby, at the end there is Hilary Swank [whose character had become quadriplegic] and he sees her as miserable and euthanises her. But as we look at it, we look in horror because she has pressure sores. You shouldn’t have pressure sores in a decent healthcare facility. She’s clearly clinically depressed. So you might just treat her clinical depression . . . All we see is a short-circuiting of all the therapeutic options.”
He maintains that calls for assisted death often point to other systemic shortcomings. Palliative care, he says, is often called in too late because when it’s introduced at an earlier stage in a person’s illness their fears and worries are often eased.
Ultimately, he worries that a legal endorsement of assisted dying even in very restricted circumstances will gradually lead to an erosion of care and a diminution of respect for older people, people with disabilities and people with dementia. When people are considering this option, he says, “the danger is it points to the imperfections in care. Well, do we kill people? Or do we make the care better?”
Mary Donnelly
Prof Mary Donnelly from the Faculty of Law in UCC specialises in medical law and is cautiously in favour of legislative change. “My own position is that if someone is dying and in pain and has the capacity to do so . . . that a person in that situation should have a choice to end their life in a way that they feel is most appropriate to them.
“And I suppose I would defend that on the basis that dying is a part of life, a part of living, and the way a person ends their life should be respected.”
But she has significant reservations. “I don’t see a measure where everyone gets a ‘right to die’ in the way that [some] wish. I don’t think that that’s possible. There are too many risks to the vulnerable. So I think inevitably there have to be boundaries and we have to be very careful about where those boundaries are.”
It’s important, Donnelly says, that vulnerable people never feel “in any way pressured into ending their lives. [This shouldn’t be] seen as an alternative to palliative care . . . That’s absolutely crucial.”
For these reasons she thinks that before any change in law there needs to be a comprehensive public debate. “This is one where you really need to take account of the nuances . . . I do think that some sort of Oireachtas hearing and [input] from a wide spectrum of people is absolutely essential ... This isn’t just an academic debate or clinicians’ debate or legal debate …. ultimately, it’s a profoundly human debate.”
The disability perspective
Our fourth interviewee wishes to remain anonymous. She has a long-term progressive illness and believes that any change in the law regarding assisted dying needs to take account of how people with long-term illnesses and disabilities are already treated.
She gives an example. “The Assisted Decision Making Act was passed in 2015,” she says. “It has an advanced healthcare directive part in it where you can make a living will. You can set out in writing your wishes about how you want to be supported, if a major intervention needs to be made and you’re not in a position to give your consent. You can appoint somebody to make a decision on your behalf. The government passed this law in 2015 and it hasn’t started yet, because they won’t fund the agency that’s needed to underpin it, which is the Decision Support Service.”
She talks about the 1,400 people with disabilities who are in nursing homes due to lack of support services and how people with disabilities are frequently not offered medical treatment options that others are offered. All of these things need to be part of the discussion, she says.
“I understand that there are people who don’t want to suffer and want to have that choice. I get that. But what isn’t in place for them and what may not be in place for others are the things to give people good lives … I think genuinely [people with disabilities] are afraid they will be pressurised or other people wouldn’t go the extra mile to keep them alive. And also that they wouldn’t be offered the supports, because life would be devalued in some way or their right to be alive would be denied.”
Irish people need to talk more generally about death and dying, she says. “I was very much hoping we would have a Citizens’ Assembly as well as an Oireachtas hearing because I don’t believe TDs should be the only ones talking about it. This thing is nuanced … Wider issues have to be looked at also – the way in which we support people to live, so that good lives can be had and good end of life can be had too.”
If you have had personal experience of the issues in this article and would like to discuss them confidentially with a journalist, please contact pfreyne@irishtimes.com.
This article was edited on October 3rd to remove an inaccuracy
