THE DÁIL IS set decide whether the Dying with Dignity Bill, which was tabled just weeks ago, will proceed to committee stage in a vote later today.
The proposed legislation would permit assisted dying in limited circumstances, allowing medical professionals to help some terminally ill patients to end their own lives.
If it becomes law, Ireland will have followed a small number of countries around the world in legalising the practice.
Given its purpose, assisted dying legislation is a highly sensitive subject. Many of those who support the bill are cautious about how it proceeds, while those against it worry about the longer-term implications of bringing in such a law.
Battlegrounds have opened up on fronts as small as the language used to describe the medical process, to ones as big as how society treats its vulnerable citizens.
Commentary on the bill in recent weeks has been largely limited to political debates, but ahead of today’s vote, TheJournal.ie canvassed views from academics, medical ethicists, legal experts and advocacy groups about what the law would mean.
Their opinions reveal the range of moral considerations at play when it comes to assisted dying.
It is likely that these issues will become the main talking points around the subject should the bill proceed to committee stage after today’s vote.
However, the difficult nature of the subject also means that many stakeholders have not yet taken formal positions on the proposed legislation.
Medical groups such as the Irish Medical Organisation and the Irish College of General Practitioners, and advocacy groups such as Age Action, Inclusion Ireland, and the Disability Federation of Ireland did not respond to requests for comment.
Terminology
Just like the decades’ long debates around abortion, the language used in debates is seen as crucial to both proponents and opponents of medically assisted dying.
As the term suggests, assisted dying is what happens when a doctor provides medical assistance to another person who wishes to end their own life.
The practice differs from euthanasia, which is what happens when a second party intentionally ends someone’s life to relieve their suffering – like a doctor administering a lethal injection to someone who is terminally ill.
There is a section in the Dying with Dignity Bill that allows a doctor to administer substances in limited circumstances, where it is not possible for a person to do so themselves, but the bill primarily deals with those who wish to end their own lives.
Even then, there are those who disagree with the use of the term ‘assisted dying’ because they believe it does not accurately convey what happens in practice.
“The definition of ending your own life is obviously suicide, and I think we should be clear and honest with people and not use euphemisms,” Aontú TD Peadar Tóibín says.
“And it’s very difficult for governments to argue against suicide in the general public and say that suicide is never an answer, and then say that actually sometimes it is an answer.”
However, People Before Profit TD Gino Kenny – who tabled the Dying with Dignity Bill – suggested in the Dáil last week that such language is “inappropriate and irresponsible”.
Dr Louise Campbell, who lectures in medical ethics at NUI Galway, also suggests the term suicide is not appropriate because the process involves a medical decision by a patient who is exercising their personal autonomy.
Language issues do not stop with the terminology used for the act itself.
There are further problems in suggesting such a law would provide people with ‘choice’, as Campbell also outlines.
“Advocates of legal assistance in dying talk about autonomy, rather than choice because it’s not simply about being a consumer and having a number of different options available,” she says.
“It’s about being able to exercise your autonomy in a situation in which you’re progressively losing control over your body or anything which is of paramount importance to you.
“The word choice doesn’t go deep enough. Autonomy is a much more nuanced concept, because it’s about giving somebody the credit to be able to make a decision about what they want in light of what’s really important to them.”
Dignity and compasssion
However, the term ‘choice’ is not strictly used by those opposed to medically assisted dying. Proponents of the Dying with Dignity Bill, including Kenny, were among those to use the term when it was debated in the Dáil last Thursday.
“There are people who a terminally ill who want a choice,” he told TheJournal.ie.
“They might be in a very difficult situation and hopefully they never have to make that choice, but they should have it.”
He referenced the case of Marie Fleming, a woman with Multiple Sclerosis who lost a landmark ‘right to die’ case in the Supreme Court in 2013.
Much of Fleming’s argument centred on the deterioration in the quality of life, and the court heard how she regretted not ending her own life before losing the use of her arms
In the High Court, Fleming previously argued (unsuccessfully) that she was likely to die by choking on her own saliva if her condition deteriorated further if she was not assisted in her request to end her own life.
Fleming died in late 2013, but at the launch of the Dying with Dignity Bill, her partner Tom Curran said that if Ireland cared about how people live, it should also care about how they die.
“In our compassionate Ireland we still insist that some people, often against their express wishes, have a prolonged and sometimes painful end of life,” he said.
“The right to die on our own terms is possibly the last civil and human right to be given the consideration it deserves here in Ireland.”
Others who spoke to TheJournal.ie expressed similar views.
Chairperson of the Independent Living Movement Ireland Des Kenny, who has been disabled from a young age, said he supported assisted dying because he did not want his condition to deteriorate to a point where he loses contact with those around him.
“I would not want to live the end of my life at a total remove, or without contract, or in excruciating pain,” he said.
“I would like to be able to make that decision, when I reached a certain stage of disability that locked me away from the love of those around me or my ability to be social.”
The ‘slippery slope’
But some argue that legalising medically assisted dying, even in only limited cases, would cross a line that could lead to a widening of the law down the line.
Under the terms of the Dying with Dignity Bill, a person could only seek assistance to die if they had a terminal illness, were 18 or over and resident in Ireland for at least a year.
But those wary of the proposed legislation look at Belgium and the Netherlands, where children can request to end their lives with medical assistance, and ask if such allowances could eventually be made here.
In 2017, a terminally ill 17-year-old became the first child in Belgium to receive medical assistance in dying, after restrictions there were lifted in 2014.
The Netherlands also allows children over the age of 12 to end their own lives if they are deemed to have the capacity to choose, although those under 16 must obtain parental consent to do so.
There are further worries that the requirement for a person to have a terminal illness could be removed, which could lead to increased pressure on elderly people and those with disabilities to end their own lives.
“It undercuts the key element of finding out why somebody is suffering and addressing it,” says Professor Desmond O’Neill of the School of Medicine at Trinity College Dublin.
“It would lead to a consolidation of prejudice against disability, particularly those with a cognitive disability, and ageing.”
O’Neill points to one case in the Netherlands as an example of where the system can potentially fail those who are vulnerable in society.
Last year a Dutch court heard the case of doctor, who euthanised a 74-year-old patient with dementia after allegedly failing to obtain her full consent to do so.
At the centre of the case was the question of whether the patient – who had previously stated she wished to end her own life, but only when the time was right – had the ability to consent to ending her own life.
The doctor was acquitted on all charges, but the case does show the complications of legislation that depends heavily on a patient’s declaration at a specific moment in time.
“It denied her personhood, her ability to consent, and her capacity,” O’Neill said.
“Certainly in showing an attitude towards a degrading of our attitude towards disability and dementia, it is very, very troubling.”
Professor Laura Cahillane of the School of Law at the University of Limerick (who did not indicate whether she supported or opposed the bill) cautioned that any assisted dying law in Ireland would have to be structured carefully to avoid such a scenario.
“If it’s not adequate protection for people involved, the issue is that you could have a constitutional challenge,” she says.
“That’s the danger with this. What’s necessary is that it’s very, very carefully drafted so that you make sure that there’s adequate protection for people and don’t have situations where people are vulnerable and where people are taken advantage of.”
Safeguards
For his part, Des Kenny of the Independent Living Movement Ireland spoke warily about people who were quick to hold up those with disabilities as an example of why assisted dying legislation should not be passed.
“We were used in the abortion referendum,” he said.
“It’s always that our lives are sacred. We’re put on a pedestal of some moral rectitude; our lives are there as a reminder to society that we are the people to be taken care of and protected from ourselves.”
Those with non-terminal disabilities would not be able to end their own lives under the Dying with Dignity Bill, which contains a number of safeguards that restrict those who can end their own lives.
This includes limits on which patients can seek to medically end their own lives, the verification of their wish to do so, and a minimum 14-day ‘cooling off’ period.
There are also provisions for conscientious objection for medical practitioners who are morally against helping a person to end their own life.
However, there are many who wonder whether assisted dying is compatible with the principles of medical treatment, which seeks to heal and “do no harm”.
A 2017 paper by the Royal College of Physicians of Ireland opposed the introduction of any assisted suicide legislation, saying it would be “contrary to best medical practice”.
And the most recent guidelines from the Medical Council of Ireland specify that medics “must not take part in the deliberate killing of a patient” (although these guidelines can be changed if there is a change in the law).
But Dr Louise Campbell of NUI Galway suggests that modern medicine has evolved so far beyond its early origins that the role of the healer may be an oversimplification of what doctors should do.
“Just because we’re able to keep people alive for longer doesn’t mean that we’re able to give people the quality of life that they should have,” she explains.
“We respect the patient’s rights to control what happens to their bodies in that context.”
Palliative care
There are other concerns that the legislation would, if passed, undermine existing end-of-life treatments such as palliative care.
Professor Desmond O’Neill suggested that legislating for assisted dying would “rip up the tracks” of attempts to alleviate suffering, and expressed concerns that it would compromise attempts to turn end-of-life care into a positive therapeutic experience.
Meanwhile, the Irish Association for Palliative Care (IAPC) previously told an Oireachtas committee of its concerns about assisted dying legislation.
In a 2011 paper, the association recommended that there should be no change in the law to legalise assisted dying, and an IAPC spokesperson told TheJournal.ie that the association would not offer an update on this position at present.
However, Campbell noted that palliative care was an area that was consistently under-funded and an option out of reach for many citizens due to geographical disparity.
The Dying with Dignity Bill also states that medical practitioners need to be satisfied that the person seeking to die has been fully informed of the palliative, hospice and other care available to them.
“If people don’t know what palliative care is or what options are available to them, they might bypass it altogether and that would be a real tragedy,” Campbell says.
“But they’re not decisions made on a whim. And certainly any legislative regime which provides people to avail with medical assistance in dying, absolutely must have safeguards in place – including access to quality palliative care.”
The bill will be voted on in the Dáil later today, and you can read what’s in it for yourself here.
To embed this post, copy the code below on your site
have your say