All the talk at the World Federation Right to Die conference held in Ireland recently was “when” medically assisted dying becomes legally permissible in this country, not “if”.
Advocates of the right to die say Ireland is well positioned to forge ahead – that we can learn from the experiences of other countries, such as the Netherlands, Spain, Canada, Australia and New Zealand in formulating laws that balance protection of the vulnerable with enabling those who want a final release from suffering.
But opponents warn of “a slippery slope” if even very restricted assisted dying is permitted.
“Personal stories keeping moving the dial,” said Janie Lazar, chairwoman of End of Life Ireland, which was hosting the conference. She paid tribute to those such as Marie Fleming, Gaynor French and Vicky Phelan, who had talked publicly before their deaths about the need for a law change.
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Six months ago, an Oireachtas committee report, by a majority verdict, recommended that the Government introduce legislation allowing for assisted dying in restricted circumstances. Three of the 12 committee members, including chairman Michael Healy-Rae, issued their own recommendations, saying the existing ban should be maintained.
Split views among politicians no doubt reflects mixed feelings among the public at large – although a referendum would not be required to make legal provision for medical assistance in dying, frequently referred to by the acronym Maid. As the Supreme Court indicated in 2013, when turning down an appeal by the late Marie Fleming for the right to an assisted suicide, our Constitution does not need to be amended to allow the Oireachtas to make Maid legal in certain circumstances.
Several media polls have indicated that the majority of the public are in favour of such a move. Yet, it is a challenging and complex issue that even individuals can be in two minds about.
What about the doctors who might be prepared to carry out this last wish of a patient if legally permissible? GPs are to the fore in the leadership of the advocacy group Irish Doctors Supporting Medical Assistance in Dying.
[ Should assisted dying be legalised? Louise Campbell and Des O’Neill debateOpens in new window ]
A former president of the Irish College of General Practitioners (ICGP), Prof Tom O’Dowd, told the conference in Dún Laoghaire, Co Dublin, that many GPs are uncertain about how to approach voluntary assisted dying, “and that includes me”. He could see parallels with the introduction of abortion, but hoped this issue could be debated without the same rancour.
“After a referendum in May 2018, when two-thirds of the voters supported the introduction of abortion, we as GPs realised that it was to be us that would carry it out in our own practices, on our own patients. Many GPs had not seen this coming.”
There had been a belief that it would fall mainly to gynaecologists, “who were slow to play their part”, he remarked, so GPs had to upskill “and it has gone well”.
However, now they fear a similar process will occur with voluntary assisted dying, whereby legislation will be passed and GPs expected to do it. Apart from the ethical questions, a big concern is the time and commitment its implementation would require of an under-resourced GP service.
O’Dowd noted that opinion leaders from geriatrics and palliative care in Ireland have come out against Maid. “While we must respect their experience and ethical beliefs, it still means that we as GPs have to draw on international experience to be fully informed of what is the context of a divisive issue.”
The ICGP has produced a discussion paper that is neither for nor against it. “Most members are likely conflicted, but see its merits in a small number of cases,” he added.
In presenting results from the first qualitative research among Irish GPs on the issue, Corrinna Moore, research ethics and integrity officer at Trinity College Dublin, also spoke of those “conflicted” in the middle ground. “The silent majority, perhaps, who may not be philosophically against Maid but have concerns that need to be addressed, as they are to become the enablers of assisted dying should legislation pass.”
GPs in favour would like to see medical assistance in dying delivered in the home, hospice or hospital, depending on the patient’s wishes
Her research drew on the range of attitudes to the possible implementation of Maid expressed during individual, hour-long interviews with 25 GPs across the country in 2021. She grouped them into three categories, “pro”, “anti” and the inbetweeners, “mid”, in reporting their views and concerns.
They all believe that any proposed legislation should take a broad view of end-of-life services, not just assisted dying. They agree that palliative care “works incredibly well for the majority of patients”, she said, but are divided on its efficiency in alleviating suffering for all. The pro-Maid camp believe that those who can’t get relief from palliative care need an alternative and that is medical assistance in dying. The mid-Maid GPs believe palliative care must be offered first, with Maid available only as a last resort.
“The anti-Maid group believe that palliative care mitigates any fear of pain or death, and that there’s no need for medical assistance in dying.” However, when pressed, a couple of anti-Maid GPs said they could conceive that it could be legislated for in very exceptional circumstances.
GPs in favour would like to see Maid delivered in the home, hospice or hospital, depending on the patient’s wishes. But that would depend on buy-in from fellow medical practitioners, mainly palliative care practitioners, “and that’s by no means guaranteed”. However, if palliative care practitioners were supportive, Maid could be delivered as an option within an umbrella end-of-life service, and most of the GPs questioned would prefer this. They would also be more comfortable if legislation had a clear public mandate, such as from the Citizens’ Assembly.
Assisted dying remains an ethical challenge, especially for doctors in the middle ground, concluded Moore, who is Marie Fleming’s daughter. “The cost of protecting all human life has to be weighed up against the suffering and autonomy of the individual wishing to avail of medical assistance in dying”.
Why would any doctor want to do this work was a question addressed by Dr Stefanie Green from Canada, who is involved in it. She recalled the profound impact on her, as a medical student, when Canadian right-to-die activist Sue Rodriguez posed the question: “If I cannot consent to my own death, who owns my life?”
She had been diagnosed with amyotrophic lateral sclerosis at the age of 41 with a prognosis of two to five years to live and took her case to the Canadian supreme court in 1993 for the right to assisted suicide at the time of her choosing, but lost. “I had never considered the notion of assisted dying before that,” Green said. “The more we discussed her case in class, the more certain I became that Rodriguez owned her own life, and how could she not?”
More than 20 years later, when legislation for assisted dying was introduced in Canada in 2016, Green moved from working in maternity and with newborns entering this world, to providing care at the exit of life. But she sees similarities in both moments of great transition for families, when she as the doctor “is clearly not the most important person in the room”.
Yes, she had asked herself did assisted dying go against her professional obligations? Wasn’t a physician meant to save and extend lives? But she decided it was another fine form of patient-centred care.
“Doctors help people diagnose illness. And when we’re given the opportunity, we help fight the illness and promote wellness. But let’s be honest, just as often, there’s not so much to do … there’s nothing left to do. Our job is to stay present and to lend a listening ear and to answer questions for our patients so they can make the best decision for themselves.”
“As the expression goes, we cure sometimes, we care often, but we comfort always,” she added.
[ Assisted dying: ‘I do not want to end my days as a lost soul in a nursing home’Opens in new window ]
In the light of opposition by the palliative care sector to assisted dying, the chief executive of the only hospice out of 28 in New Zealand to offer this option spoke to The Irish Times, ahead of addressing the conference. Tina McCafferty, of the Totara Hospice in Auckland, said they had spent two years looking at whether or not it conflicted with their vision, determined to have a clear rationale “for wherever we landed”.
“We felt that our [hospice] movement was getting captured in emotion, and not actually being able to separate facts from feelings, and we wanted to look at the evidence.”
They were also mindful that, having being rooted in the community for 40 years, the vast majority of the New Zealand public were in favour of the option. “We concluded that there was nothing within the values of assisted dying that conflicted with our vision, purpose or values.”
While she acknowledges the World Health Organisation definition of palliative care states that it doesn’t act to hasten or postpone death, “we would certainly take the position that we do every day”.
Giving an antibiotic postpones death; medically keeping people comfortable may hasten it.
By the time this disease will be finished with me, I will be a shadow of my former self. I will be a carcass of bones and flesh, living with my own personal frustrations haunting me
— Siobhán Malone McBarron, who lives with muscular dystrophy
There have been 28 assisted deaths in the Totara hospice so far; some were of patients already attending, others “forced into our care”, she says, because their care organisations did not offer that option. Assisted dying has been legal in New Zealand since 2021 and last year there was a total of 344 assisted deaths, representing less than 1 per cent of all deaths.
“When you’re in our care, you’re in our palliative care anyway,” says McCafferty. What’s different for anybody choosing assisted dying is “the certainty of your date”.
The conference tapped into the power of first-hand accounts such as that from Siobhán Malone McBarron (42). A breast cancer survivor, she is living with muscular dystrophy, that is “eating away at my muscles”, she said, causing physical destruction from the inside out.
“By the time this disease will be finished with me, I will be a shadow of my former self. I will be a carcass of bones and flesh, living with my own personal frustrations haunting me. Every day, I’m trying to survive in a body that wants to destroy me.”
A slight figure on two crutches, she made a plea for “compassionate” legislation that would cover situations such as hers; that is, life-debilitating conditions that have no cure or treatment, and no defined timeline. The Oireachtas committee has recommended that assisted dying would be restricted to those who have six months or less to live in most cases, or a maximum of 12 months for those with a neurodegenerative condition.
Currently she has “a reasonable quality of life” but Malone McBarron hopes a right to assisted dying will be in place here when she can longer tolerate her constant pain.
“I do not want the people I love watching my body waste away and deteriorate in front of them while I lose my independence, my dignity and most of all the ability to care for myself … My illness is more than just enduring pain. It’s a constant assault on my body, emotionally, mentally and physically. So why can’t I get to choose to say goodbye and go on my terms if the time is right for me if I want to?
“I personally think the final stage of accepting any incurable illness or terminal diagnosis is surrendering to it, as none of us are going to live forever. What are the benefits of dragging out someone’s pain, misery and suffering when the end result is death anyway? Death comes for us all eventually.
“I cannot control the progress of my disease but I should be able to control when and how I die,” she added. “All I want is to have the option to be able to choose my final last step when my suffering becomes intolerable.”
A prolonged standing ovation, before Malone McBarron was assisted off the platform, suggested she may have “moved the dial” another notch among the undecided in the room.
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