Joint Committee on Assisted Dying debate -
Tuesday, 10 Oct 2023

Ethics of End-of-Life Care: Discussion (Resumed)

An Cathaoirleach

Apologies have been received from Senators Ruane, Hoey, O'Loughlin and Seery Kearney.

Parliamentary privilege is considered to apply to the utterances of members participating online in a committee meeting when their participation is from within the parliamentary precincts. There can be no assurances in relation to participation online from outside the parliamentary precincts and members should be mindful of this when contributing. This committee discusses dying, including suicide. Support information can be found on the committee's web page.

Before we start today, I have to apologise in advance that I will have to be very rigid about time today because the budget is on at 1 p.m. and the members have to be in their positions at 1 o'clock. At the same time, I am so grateful to the witnesses who have come here today.

Our meeting today continues with the professional and ethical issues of assisted dying module. The agenda item is engagement on the topic of the ethics of end-of-life care. I warmly welcome Ms Elma Walsh, Mr. John Wall, Mr. Tom Curran and Mr. Garret Ahern. I am so grateful to each one of them, as are the committee members and the secretariat, for taking time out from their lives to come here to educate us because of their own personal life experiences, which many of us know a lot about already. We want to have engagement with them to hear what they have to say, to ask them questions and to benefit from their knowledge and what they have gone through in their life.

I also acknowledge that Deputies Alan Farrell and Lahart are with us online as well.

The format for this meeting is that members will ask questions after the witnesses have given their opening statements. A member can ask an individual witness a question or address a question to all the witnesses more generally. We will just say that each one of the witnesses will keep to five minutes - we will see on the clocks - in giving his or her opening presentation.

I ask Ms Elma Walsh to start by giving us her opening statement. Again, I warmly welcome Ms Walsh.

Ms Elma Walsh

I thank the committee for inviting me to speak today around my lived experience in relation to end-of-life care and assisted suicide. Our son, Donal, came to national prominence in 2013 as he fought his final battle with cancer. Having your son die from cancer at the age of 16 is the exception in life but from the time Donal was diagnosed as terminal, he lived while dying with the help of his palliative care team. The team not only took Donal into its care, it also looked after us as a family and individually and took our worries, fears and general well-being into consideration. In October 2012, he was told he had weeks - maybe months - to live. In December of that same year, he was told to maybe have an early Christmas. In February 2013, he was told he might not see Easter, yet after Easter, in April 2013, following local publicity, he was asked onto RTÉ and had a conversation with Brendan O'Connor. In addition to the RTÉ coverage, that conversation has had hundreds of thousands of hits on social media, even to this very day, ten years later. He spoke about valuing life and appreciating every minute. He contrasted his circumstances of wanting to get every minute out of life with those who were taking their lives by suicide and the devastation that caused families. That conversation has saved many lives. It led to our family setting up the Donal Walsh #Livelife Foundation in order to promote his anti-suicide, live life message.

I have two different but related messages. The first concerns palliative care. It should not be underestimated. This type of care is focused on providing relief from the symptoms and stress of a terminal illness. The goal is to improve quality of life for both the patient and the family. That is what it did for Donal and for us in his final and most important challenge. It does not hasten death. Palliative care is a way of easing people into their final, most important struggle. A fundamental principle of palliative care, in the words of the World Health Organization, is “neither to hasten nor to postpone death”. Palliative care is about care at the end of life, not about ending life, as I am sure the experts remind the committee. As an organisation, the Donal Walsh #Livelife Foundation has been involved in campaigning for greater resources to be allocated to palliative care. In 2015-2016, we donated €80,000 to Kerry Hospice and €40,000 to Milford Hospice. Although we do not ask for money, people generously contribute to our mission to help donate money to other hospices and mental care facilities. If we neglect palliative care or turn it into something it is not by linking it with euthanasia, it will be to the detriment of living. Palliative care provides opportunities for making memories and enjoying what time we have left with family while knowing our time is short. When you think about it, in some ways, they are the lucky ones because we are all dying, every day. For me, any introduction of assisted suicide or euthanasia would undermine the trust placed in doctors when it comes to end-of-life care; they would be seen as death-givers. In some countries where it is legalised, such as in Canada and Holland, the deadly drug can now be given for autism, tinnitus and mental health issues. Surely, this is not what we want for some of the more vulnerable population of this country. I can honestly say that, with the help of palliative care, Donal died with dignity and got to complete most of what he wanted to do. I fear what this committee could set in motion because if it removes the present legal requirement that doctors do what they can to save lives, the value of life will be significantly reduced. Can anyone here guarantee that elderly people will not be subtly or overtly pressured into taking end-of-life pills in a situation, for example, in which they are living in a family house and the child or grandchild is looking for a house or when the cost of their care is making them feel like a burden? We already know that coercion happens around handing over moneys and going into nursing homes. Often, all the elderly want to do is to live in their own homes, which they have earned, in the communities in which they have lived all their lives. They are made to feel guilty by taking up a space a younger family may need.

The second message I want to convey is about suicide. Donal spent his last months encouraging people to value life; four months after Donal died, the recently-deceased coroner Terence Casey said that Donal’s appeal to young people about suicide has "considerably reduced" suicides in Kerry. Mr. Casey also said, “Donal speaking out in the way he did has made a huge difference. I usually deal with 18 suicides a year on average ... but since Donal spoke out about suicide, I have had no suicides from March to August”.

More than a year later, traleetoday.ie reported the coroner as saying that since Donal appeared on Radio Kerry “Kerry Today” programme in March 2013, there have been four reported suicides in the south Kerry area. This is a drop of 24 from 28 reported in the prior 12 months.

Society must promote hope. Assisted suicide is a statement of no hope. Palliative care allowed Donal to spread a message of hope and reduce the number of suicides. Telling young people that their life is valuable, no matter how uphill it may seem at the time, is important. As Donal said, “Everybody has their own mountain to climb.” Legalising assisted dying is to bring about a clash in society. Life is valuable no matter our age or circumstances. We can all help to fight against suicide by turning our back on assisted suicide.

If the Bill goes ahead, we will be in a bizarre situation where the Government will promote suicide prevention on the one hand, while offering it on the other. We would be saying suicide is okay for some people, for example, somebody who is ill or disabled. We would devalue their lives and compare them to another group the Government is reaching out to with suicide prevention campaigns.

If Donal had taken the euthanasia drug either of the two times he was told he would not live long, the number of suicides in Ireland would not have dropped. This is a potential that could have been lost. All people with long-term illness have potential to change and improves the lives of family and friends as long as they live. That is a message of hope. I thank the committee for hearing what I have to say and I hope it will be taken into consideration.

Mr. John Wall

I thank the Cathaoirleach and committee members for the opportunity to participate in today’s discussion. I wish to acknowledge from the outset that this is a difficult conversation for many but one which, thankfully, this country is now more than ready to have.

Almost a year ago to today, I made a promise to my good friend Vicky Phelan that this issue would continue to be discussed and debated in her absence. As we are all aware, Vicky was a passionate advocate for change and fervently supported the right to die with dignity should the need arise. This is a topic we discussed in some detail in the months prior to her death and I assure committee members that we were of a very similar mindset regarding this very emotive subject.

Like Vicky, I too was diagnosed with a terminal illness and was advised to get my affairs in order. There are no appropriate words to describe the emptiness and loneliness felt when you are told such harrowing news. Far from wishing to die though, we sought to outlive our respective prognoses and so began a journey helping others understand what the world looked like through our eyes. We seek to extend our time on this Earth by exploring every available avenue that offers hope and gives a lifeline where once there was none or, if indeed it did exist, was barely visible. I mention this because of the necessity for others to clearly see that for the vast majority of those with a terminal condition, this conversation pertains to a point in that journey where life itself is ebbing away. This is about how a person says their final goodbye rather than when, given the fact that the inevitable is within sight.

Despite our best efforts, not all treatments are successful to the point where life is guaranteed and no matter the inner strength one possesses, not all are as fortunate as I and succumb to their illness, with many having to endure horrific physical and mental pain in the process. This, I might add, is despite the best efforts of our palliative care services, which, incidentally, I have nothing but high regard for. In fact, I would like to see these services work in tandem with the healthcare professionals who, it is to be hoped, will one day be entrusted with overseeing a person’s right to guarantee a dignified passing.

Like many others, I fear what the end will entail, but also acknowledge that expectations can be surpassed and, like myself, fear can turn to unbridled and unexpected joy when you start to outlive the expectations of others in terms of life itself. This is a hugely important part of this debate and only serves to reinforce the absolute necessity for all involved to understand the nuances and complexities of the issue. There is no one-size-fits-all solution and rather than pit one side of this conversation against the other, the solution is that we work collectively to ensure progress, which I believe will bring Ireland to a point where we will legislate for assisted dying, thus ensuring, where appropriate and possible, a dignified passing for those who seek it.

When publicly commenting and discussing these matters, we all have a responsibility to ensure that the narrative remains focused, where possible, and does not stray into constant comparisons with other jurisdictions. I also wish to express my concerns around the religious narrative that has somehow made its way into this conversation. Regardless of religious beliefs, death is something that all of us are guaranteed in some way, shape or form. To this end, I reiterate that we are here to discuss what may be deemed acceptable to the Irish public and subsequently achieved through a rigorous legislative process, after which it can be implemented via an equally exhaustive administrative process. Yes, we can learn from others but, as a democratic nation, we hold ourselves accountable and to suggest any form of implementation will lead to the so-called “slippery slope” does nothing other than undermine the credibility of all those involved, not to mention that of the very people we are so desperately trying to help.

In order to fully understand, it is critical we responsibly explain. Many examples have been cited as to how this will or will not work, with those opposed frequently using words like "suicide" in an attempt to influence the thoughts and views of us all. I ask that the language we all use take consideration of those who have sadly taken their own lives in tragically different circumstances than those we are discussing here today. Including those who voluntarily seek a dignified passing in such a conversation is disrespectful in the extreme to all concerned and most especially to our loved ones who must listen to it.

I will reassert why we are here in the first instance by using my own explanation, that is, how I explain it to others. Contrary to the beliefs of many, we are merely seeking the right to apply for consideration of a dignified death. It is others who will ultimately decide if the application is successful. With many believing this decision rests with the person, it is vital we dispel any idea that this would ever be an opportunity for an individual to simply cease living. The threshold criteria for consideration and the composition of the decision-making panel will invariably prove difficult to legislate for but, upon a recommendation from this committee, that process can at least begin.

There is absolutely no doubt that there is significant public support for legislating for assisted dying. No longer are we bound by religious beliefs or the inability of our citizens to have their say in the decision-making process. Testimony to that fact is our very presence here today. Time is precious to us all, especially those who live with a terminal illness. I urge each and every committee member to resist the temptation to push this issue further into the procedural abyss, to recommend progress and to be catalysts for change. We have an opportunity to ease the transition for some from this life to the next, whatever and wherever that may be. I sincerely wish this committee well with the decisions that it must make in the months ahead and hope that this contribution and the contributions of many others will assist in that process.

Mr. Tom Curran

It is very significant for two reasons that this is being discussed in 2023. The first is that, ten years ago, our High Court and Supreme Court sent this issue back to these very Houses to be looked at, having made a judgment that, if they could, they would have brought in something for Marie Fleming. They could not do that for one individual person so they passed the matter back to these Houses. That was ten years ago. It has taken ten years for anything to happen. The second reason also relates to ten years ago. December this year is the anniversary of Marie's death. She died on 20 December ten years ago.

Like an awful lot of people involved in this issue or trying to achieve the legalisation of assisted dying for people, I got involved for very personal reasons, as the members will know. Marie Fleming was the person I lived with and loved. She suffered from multiple sclerosis, MS. She was one of the unlucky people for whom the MS entered an advanced and progressed state very quickly. She decided the MS was taking away her ability to live but she did not want it to have control over her ability to die. She did not want a prolonged and possibly painful end. She did not want that for herself but she also did not want it for the people around her. She did not want us to have to watch her die for months and possibly years. She decided that, when the time came, she wanted that choice herself.

It was very unusual for it to be spoken about in Ireland nearly 20 years ago.

On Marie’s instructions, which I took an awful lot of, I went out looking at how that might be achieved. There are two ways in which it could have been achieved. The legal route we found was the compassion of the Swiss people, who have had assisted dying for a long time in Switzerland. The compassion of the Swiss people allows people to travel to Switzerland. Under Swiss law, people from Ireland can get assistance there. It does not have to involve a medical professional; in fact, most of the clinics there do not involve medical people at all. We looked at that route but there were a couple of obstacles. The first was the ability to travel and the second was that the only method used in Switzerland at that time was to swallow to 100 ml of a liquid - Nembutal dissolved in water. Marie’s swallow was being affected by her MS, so that option would have meant she would have had to go before she wanted, which defeated the purpose. The other way was to go outside the law and put a plan in place ourselves. Unfortunately, those are still the only two methods that people can use in Ireland to achieve a peaceful death for themselves.

Suicide was legalised in 1983, so there is no legal impediment to anybody taking their own life, and that was upheld in the High Court. Part of our challenge was based on the fact that the Criminal Law (Suicide) Act 1993 discriminated against persons with a disability in that it prevented such persons from having access to something that an able-bodied person was able to access. That challenge was upheld, so it is not a crime to take one's own life and nobody can be stopped from doing so.

I would like the committee to look at the Swiss option. We have heard criticism of many different regimes which have brought this option in, including Canada, the Netherlands and Belgium. We seldom hear anybody criticise Switzerland because Switzerland works for the people for whom it is intended to work. I urge members to look at the Swiss law. I would like this committee to recommend that the Oireachtas enact Marie’s law to allow this option to be made available to people like Marie. As the High Court stated, it would have made it available for people like Marie if it had been able to do so but its only option was to strike out the law.

If members wish to know more about the Swiss option and the whole idea of assisted suicide, we are holding a meeting at 11 a.m. tomorrow in the Teachers Club. Members are very welcome to come. I urge them not to allow Marie's death to have been in vain. While I will not go into the detail, she died peacefully. Let us honour her life and death by enacting Marie’s law.

Mr. Garret Ahern

I thank members for the opportunity to come here and address them. First, I wish to thank the oncology and palliative care teams in Cork University Hospital who worked heroically and valiantly in the care of my wife, as I am sure they do every day in the care of all their patients. My wife Vicky Janssens died by assisted dying in her home in Belgium in April of this year. I will give members a brief history of the events that led up to this action.

Vicky was a metastatic breast cancer patient for more than ten years. When I met her six years ago, she was about to be discharged from the observation period because the medics believed her cancer had been successfully treated. Within a short few weeks of Vicky and I first meeting, the cancer returned. There were lumps in her neck and it transpired that the cancer had metastasised to her lymph nodes. So we began, as many others do, on a rollercoaster for six years, which, thankfully, prolonged Vicky's life.

Over those years, the cancer became progressively worse, metastasising to her lungs, liver, bones and, ultimately, her stomach, which is when the cancer became too much for her to bear. These symptoms included a loss of appetite and inability to eat without feeling the need to vomit because the normal transit of food could not pass through the tumorous obstructions that were in her digestive system.

The terminal diagnosis was delivered in December 2022 and we began, despite Vicky's reservations, on a programme of chemotherapy, along with support in the form of pain management from the palliative care team. Regrettably, none of these interventions showed any improvement in Vicky's pain levels and there was a marked deterioration in her quality of life. In a terse exchange one day between Vicky and the palliative care team, she had expressed the fact that she did not find the medication efficacious and asked if medical cannabis might be considered for her symptoms. I am not in any way questioning the judgment of the palliative care team on this but it was said that medicinal cannabis was not indicated for Vicky’s condition.

Afterwards, in tears, she told me how extreme her pain was and that she felt she could no longer manage it. She also felt she was not being supported by her medical team in this respect. She asked me what would happen if she consumed all of the morphine we had in the house. I can only say I advised her in the strongest possible way that this would be a bad idea. I had worked in suicide prevention in Limerick for a number of years and I have seen the after-effects of suicide. I told her that this rarely ends well and that the outcome may not be as she intended. At this stage, which was in January 2023, Vicky put in place a chain of events that would lead to her attempted suicide in mid-February 2023. Subsequently, a back-up plan was put in place in our decision to travel to Belgium to avail of medically assisted dying. I believe the thought process and mental state of my wife were sound. I also know she did not want to end her life, rather she only wished to end the agony she was going through on a daily basis. Her life had become one of constant and intolerable pain, which I would like to emphasise. Those might come across as only words but it is the day-to-day living in suffering with that constant and intolerable pain which she had to endure and we, as her loved ones, had to endure watching the woman I loved rapidly deteriorating.

In mid-April I was presented with an ultimatum of sorts, one that I was under no pressure to acquiesce to. Vicky told me she had made the arrangements to travel to Belgium to end her life, and that she merely needed to know whether it would be me or one of her lifelong Belgian friends who would accompany her. I had supported my wife through her entire cancer journey, including the last painful months, and I could not abandon her in this final agony. We travelled to Belgium in mid-April of this year. My wife was in extreme physical pain at this stage. There was also extreme emotional pain. She was leaving behind her daughter, who did not accompany us on this journey. She was also leaving behind the dear friends she had made over the past 20 years in Ireland. Perhaps more importantly, she was leaving behind the country she considered home. We spent four days in Belgium, alone and in isolation for the most part, dealing with what lay ahead. Vicky could not leave the apartment and she could barely get out of bed. The procedure took place in a friend's house on 21 April at 2 p.m. It was the most dignified and peaceful passing I have ever witnessed.

The trauma is not in the administration of assisted dying but rather in the loneliness, isolation and lack of support we both endured during our time in Belgium. Had a procedure such as this been available in Ireland, albeit with the most strict guidelines and safeguards the State could provide, we, her loved ones, would have been saved this emotionally and psychologically harrowing ordeal. I would also like to add that I believe quality of life can be found in the most difficult circumstances and I am by no means suggesting that the vulnerable, elderly or people with disabilities should in any way be coerced into a choice such as this. There should be a rigid examination of the medical facts and there should be a psychological assessment carried out on a patient wishing to avail of assisted dying or expressing their wishes in that regard.

The committee members have an unenviable and momentous task ahead of them in their deliberations. I would only ask that they take into consideration my story, however tragic it might seem.

I also feel that this story is one of many that are unfolding in this country right now, as we speak. I thank the committee for taking the time to listen to me.

An Cathaoirleach

I thank Mr. Ahern for that, and again we appreciate all the witnesses very much. We will start with Deputy Higgins.

Deputy Emer Higgins

I thank all our witnesses for being with us here today and for sharing their personal testimonies and experiences and putting them on the public record. Mr. Ahern summed up what we as a committee have ahead of us. It is a big task in quite a tight timeframe. We rely on the expertise of people who work in this industry and people who have been through this journey.

Donal sounds like a remarkable young man. He really does. It sounds like he changed and saved lives, no more so than in his own dying days. I am sure Ms Walsh is proud of him and of the legacy that he has left behind in terms of recovery, hope and compassion. He sounds like someone who lived life to the full and I suspect that if assisted suicide was available, he probably would be somebody who would never have chosen to opt for it. That is what we are talking about here today. We are talking about choice, and especially choice for people who at the end of their lives are in intolerable pain and suffering.

I thank Mr. Wall for being here today. His testimony is very much a tribute to Vicky Phelan, who is a household name at this stage. She inspired many people through her strength, determination and advocacy, from everything like her online page, Vicky's Tribe, to her book and all of her interviews. She made a huge difference to people's lives and the very existence of this committee is testament to her and her advocacy. It was the Dying with Dignity Bill 2020 that eventually made this committee happen, and it was ten years too late. This committee happened ten years too late. I was a teenager when Marie Fleming took her High Court challenge and I remember it vividly. I can remember the news coverage and the discussions that it sparked around kitchen tables and in classrooms around the country. I can remember her heartfelt plea and Mr. Curran's steadfast support for her. He was always by her side and doing interviews. I thank him for being here with us ten years later because I am sure that has been a long and frustrating ten years when he saw the High Court effectively ask for the Oireachtas to look at that. Two whole cycles of Oireachtas people have looked at it since. I hope this committee does Marie justice.

I was very struck by what Mr. Ahern said about his wife Vicky being unable to manage her pain any longer. That is what we are looking at here, whether we can legislate for people who are in constant, intolerable pain. The really difficult thing is that if we do legislate for it, how do we provide the safeguards to make sure that, as Ms Walsh has said, it is not abused or misused or that anyone is in any way feeling societal pressure towards making this decision. I do not believe anybody in this entire country or in this Oireachtas wants that to happen, no matter what their views are on it.

I was struck by what Mr. Ahern described as the trauma of loneliness, isolation and lack of support. That is a grounding factor for us in this committee.

I will pick out a line from Mr. Wall's testimony. He says what he would like to see is "what may be deemed acceptable to the Irish public and subsequently achieved through a rigorous legislative process, after which it can be implemented via an equally exhaustive administrative process". It is a mouthful but it captures what I would like to see us get to as a committee if at all possible. My question for Mr. Curran is, does the Swiss system meet that?

Mr. Tom Curran

Yes.

Deputy Emer Higgins

It does. Could Mr. Curran tell us a little bit about it? I know that he has got his meeting tomorrow but I would appreciate if he could tell us about it.

Mr. Tom Curran

The Swiss system, as I said, has been put in place since the early 1940s. It has existed for a long time. The reason why it gets no criticism from anybody else is that it works. The application process is relatively simple but the Swiss are, I would say - and I am sorry for using this term - Germanic. It is the only term I can think of. They are very rigid in what they allow but it works. I cannot go through the legislation with the Deputy in detail but I would be more than happy to meet up with her any time, and go through it in whatever detail she likes.

All I can say is there is no criticism of it because it works.

Deputy Emer Higgins

I am aware that we have done a lot on the international context already. I apologise if I did miss that but we have definitely had people from other areas and perhaps it is something that we as a committee could look at as well and how we could deeper explore the system. I will leave it there because I am aware that we are tight on time.

Mr. John Wall

It is a point very well made by Mr. Curran. We constantly talk about other jurisdictions and what does not work but rarely do we hear what actually does work. This is very important for both sides of this debate and for all sides bar none of this debate to help us understand how to move and progress forward. While I would be somewhat opposed to the copy and paste mentality of some - I am not referring to anybody here - I believe we can learn from what others have achieved and how relevant it is to what we are trying to achieve.

Deputy Alan Farrell

Good morning to our witnesses. Please forgive my non-corporeal presence. Deputies must learn the art of being in two places at once and the witnesses are witnessing it this morning. I thank Ms Walsh, Mr. Wall, Mr. Curran and Mr. Ahern for coming before us this morning and detailing their lived experience and the very significant contribution they can make and have made to this overall debate and indeed to the deliberations of the committee.

I wish to address two areas of my own concern and, like Deputy Higgins, recognising the experiences of other jurisdictions, which, the witnesses will be happy to hear, we have been working through in recent weeks and will continue to do so. My major concern, having listened not just to the contributions today but also the contributors' commentary and other witnesses previously, is the issue of coercion and undue influence over people who are at an extremely vulnerable time in their lives. I refer also to how the State would deal with individuals who might have capacity issues after a certain point in an illness, for example. Unfortunately, with the best will in the world we as legislators must square that circle and figure out how to protect the citizens of the State. Having gone through some social changes in recent years in this country, and while I believe this is a somewhat separate and different issue, I cannot help but feel that exporting the question of whether a person can avail of assisted suicide is not necessarily what I would like to do. I would rather we deal with it in a compassionate manner and that we support as best we can the palliative care settings across the country and make sure they are the best that they can be. As was said already I believe this is a matter of choice with the appropriate protections in place. This is what I am striving to find.

Mr. Wall spoke of pushing "further into the procedural abyss", as in pushing this matter down the line. At the start of this public process, I expressed my belief there was not enough time left in the present Dáil to actually legislate for such a significant matter. I am afraid that I must stand over that statement, even at this point, due to the unfortunate delay that was outside of our control on the establishment of this committee, and in the production of its report and then action of Government. I do not believe we have a year left, quite frankly, and I just want to flag this. This does not necessarily mean this process is futile. Quite the contrary. From previous reports being brought forward into a new Dáil, I am aware that this matter could be picked up as it was left whenever this process airs and is published. These are just some general remarks. Some of our witnesses may wish to comment.

Ms Elma Walsh

Going into the next Dáil, this situation cannot be rushed. It is too important to be rushed actually. It is just something that has to be taken into consideration. As we heard today, there are some very sad cases. They really are sad cases, but I do not think the sad cases should be the rule. Donal did die of cancer. He died with the help of palliative care. He was in a lot of pain at times, but the palliative care team was able to assist hem when he was in pain. They were able to come and give him the pain relief. He did not want morphine. He was just a child who did not want morphine. He had an experience of morphine when he had a leg operation in Cappagh hospital and it did not suit him, so he was on methadone. He was on methadone for months before he died. He went to rugby matches and nightclubs - he went everywhere. It did not stop him from living life. However, the exceptional circumstances out there cannot be the rule for the majority of the people. We have to take into consideration the majority of the people. I do not think hard cases make for good governance to be honest. That is my standing on it.

Mr. Garret Ahern

I will address the Deputy's concerns with regard to potential coercion and again, I am mindful of the fact that we are including overseas models and they may not necessarily be applicable to a set of circumstances we come up with here. The Belgian model requires somebody to have a terminal illness and a limited lifespan, perhaps less than six months, and to repeatedly request assisted dying. Being elderly, vulnerable or suffering from a disability are not terminal illnesses and, therefore, they could be excluded from this framework. If we take the instance of mental illness, which is a terrible debilitating affliction that affects many people in this country, someone may feel hopeless and lost and not feel that they can go on with their life now because of such a mental illness, and my heartfelt sympathies go out to all of those people who suffer in that way, but it does not apply that they will feel that way in six months’ time or a year's time. Therefore, we can introduce exclusions and safeguards to minimise as much as possible that coercive elements will not come into play in this regard. I hope that goes some way towards answering the Deputy's question.

An Cathaoirleach

Is that okay for the Deputy?

Deputy Alan Farrell

Yes, I thank the Chair.

Senator Rónán Mullen

I welcome and thank everybody who has come here today. We can all agree that this is a profoundly difficult and challenging issue to have to discuss. For those of you who have been in real-life situations of losing loved ones, it is something that everybody must take seriously. At the same time, to use a well-worn expression, we all have skin in this game because what we do or do not do may very well impact on all of us.

I am struck by the fact that the discussion, as I understand it to be taking place in Irish society, really does centre around wanting to respect people's freedom as much as possible and only curtailing that if there is a fear or well-founded concern that there will be implications for other people in what is decided. I really believe that it is not a debate around dogma or some kind of preconceived "Yes" or "No" answer to this. People are trying to figure out the common good here. Certainly, what I hear Ms Walsh saying, and she should please correct me if I am wrong - she is coming from the beautiful perspective of what Donal did with his life - but I hear her saying that she is concerned. She used the phrase of a subtle and overt pressure that people might feel if the decision is made to allow some people to either end their lives or have their lives ended. That certainly chimes with something Professor Theo Boer in the Netherlands spoke about in recent weeks.

He came from a perspective where he was involved in the supervision of the euthanasia system in the Netherlands but has become much more critical of it because he sees a kind of social influence. He tended to say it was less about pressure, even though there is talk about families putting on pressure and so on, than a kind of social burdening of people that occurs.

Am I correct in thinking that Ms Walsh believes it would be harder to prevent people from feeling a burden if this law were to change?

Ms Elma Walsh

I think people would feel a burden, for example, an older person. My background is farming. It has happened in Irish society in respect of farmland, where somebody wanted to take over a farm, which might have resulted in a brother or sister who had an illness or something being put into a psychiatric home back in the day. Now, however, will the alternative be taking the pill? People can put pressures on themselves as well, from all the talk that is out there. It is not that a child, grandchild, son or daughter will put pressure on the person, but that the individual could feel overburdened and think about it as a relief.

On what was said about the Bill that is coming in, can anybody present a guarantee that if we look back at that Bill in ten years' time, it will be the same Bill? In most of the countries where this has come in, their laws have been relaxed. Will there be amendments in future? If we look back at this Bill in ten years' time, will it be the same watertight Bill we bring in today? I do not think so.

Senator Rónán Mullen

One of the remarkable features of this debate, certainly in this country, is that doctors, nurses and others involved in palliative care seem to be very worried about a change in the law here. I think that is a fair statement but I will ask everybody for their view on it. We perceive those people as caring. They are cheek by jowl with the people they seek to assist at end of life and we all know that wonderful work is done in terms of the emotional, physical, spiritual and social support. Many families are very grateful to those palliative care professionals and I am not just talking about doctors. Given they are in the caring business, why of all groups do they seem to be pretty unanimous on this? Is that the case?

Mr. John Wall

I would like to see the statistics stating that all such professionals are pretty unanimous. There is very varied commentary from all aspects of healthcare professionals, those in palliative care included, to suggest that very many are open to having the conversation. A group of more than 100 Irish doctors have publicly stated their support for the principle of assisted dying. I have received palliative care. It has given me the quality of life that I currently enjoy. I have nothing but respect for the healthcare and palliative care services. Progressing this to a point beyond discussion at committee can only be done collectively through the voice of everyone concerned. That is the voice of every citizen in this country, most especially that of the palliative care services.

We are very fortunate that the service provided by those in palliative care services in Ireland is second to none. They are absolutely incredible and excellent. However, we all know people who, despite the best care in the world, have suffered an undignified passing through no fault of the services involved, which have done their best. I have seen it in recent years on a number of occasions and it is very distressing. If we are to focus the conversation momentarily and look at those people, not in isolation but for the purposes of this example, no one wanted them to suffer and the palliative care services did all they could do. I am thinking of one person who suffered for three days at the end. A lot of pain was involved and nothing could be done other than wait.

It is that waiting that we need to avoid where possible, should that person, having had the capacity to consent at a point in time, wish to do so, and should a panel approve that person's wish to do so. There are many elements to this. It is not just something that one would seek to get and have the wish granted. Absolutely not.

Senator Rónán Mullen

Could I refocus and maybe Mr. Curran and Mr. Ahern could speak on it? Mr. Wall refers to 100 doctors, which is a small percentage of doctors in the country, but among the palliative care people, who I think we would all assume are caring people who see the situation up close - we will find out in the fullness of time - it seems to be the case that the great preponderance of professionals who are dealing with exactly the situations the witnesses describe are not on board with what the witnesses, in all sincerity, are looking for. I am wondering why that is. That is difficult to understand unless we think of our doctors, nurses and palliative care professionals as being uncaring or somehow remote, but they are not; they are in the thick of it. Have the witnesses thoughts on that?

Mr. Garret Ahern

There have been huge advances in medical care and treatment over the past 70 years. The Hippocratic oath is first to do no harm. I believe that all medics, including those who work in palliative care, really do their utmost to prolong people's lives, including both the quality of their lives and the duration of their lives. Over the past 20 to 30 years, our lifespans have become increasingly longer. We have, in my opinion, tended to outsource the care of our loved ones, which would have traditionally taken place in our homes, and the death of those loved ones, which may have taken place in their homes. We have now outsourced that to the commendable, laudable organisations of hospices, nursing homes, and indeed palliative care which may be received in a hospital. Death has become something which we have kind of put in a corner and tried to medicalise as much as possible.

I cannot begin to speak for the professionals involved, but I did not arrive at this conclusion one morning. I had much introspection about palliative care, end of life, and its merits and virtues, which are still there, but I think there is a reticence on behalf of that group to accept something that is counterintuitive to everything it strives to do, which is the prolonging of life. I do not know if that gives the Senator an adequate answer. Those are just my thoughts.

Senator Rónán Mullen

It is helpful. It is just that I do not think of them as people who operate from fear or ignorance. One tends to think of them as people who are at the coalface. Is it that they see downsides for others if they change their role? Mr. Ahern mentioned prolonging life. They would probably see themselves as not being able to prolong life but helping people to live as well as possible, or to live well and die well, as it were.

Mr. Tom Curran

I agree with Mr. Wall that we hear a lot from specific people in palliative care here in Ireland. They make much noise and give the impression that they are speaking for the rest of palliative care, but I have been dealing with this situation for a long time and campaigning for it. I have come across palliative care people in Ireland who are very supportive of this. To come back to the Senator's understanding that they do not support it, maybe it is a misunderstanding, because if we move outside Ireland, the two work hand-in-hand in other countries. Palliative care is involved in end of life choice. There is a conflict there as far as Ireland is concerned. I do not agree that all palliative care people in Ireland are against it. I stress that I personally think that palliative care is one of the best branches of medicine in the world. In fact, I support palliative care. I was on the palliative care research board here in Ireland for many years and it is one of the best situations that people can have but, again, palliative care cannot cure all ills.

Senator Rónán Mullen

We might come back to that issue in the second session.

Mr. Tom Curran

Palliative care is great at pain management but it cannot give people back their mobility or eyesight. It cannot give people back their dignity.

Senator Rónán Mullen

I was involved in a report on palliative care as a member of the Council of Europe. Perhaps palliative care professionals in Belgium and the Netherlands are exceptions but in general, palliative care professionals did not see euthanasia or assisted dying as a part of the package of things we should be talking about when we talk about excellent palliative care.

Deputy John Lahart

I thank Ms Walsh, Mr. Wall, Mr. Curran and Mr. Ahern. It is clear they have come more agonisingly close to personally dealing with the ins and outs of this issue than most people have. They have seen the issue and considered it, from both sides, inside and outside. I will make a couple of initial points. I say to Ms Walsh that there is no Bill coming. This committee has been established on the back of a Bill that was put before the Dáil. There is no Bill ready. It is our job, as a committee, to make recommendations or not, or to come up with proposals or not, at the end of our work. Nothing has been set in train yet.

I was taken by a point made by Mr. Ahern towards the end of his contribution. Death has, to a large degree, been sanitised out of society. To continue on the theme, it was very often the case 100 years ago that the bed you were born in was also the bed you died in. Death is messy, from my experience, and most of us here have experience of it. It is messy and difficult to watch. It can be very dignified. A journey with a loved one who is dying can be a real blessing, a privileged place to be and a privileged thing to be a part of, in my experience. It can also be very traumatic and distressing. Mr. Ahern is right to raise that matter. Since we have, in many cases, shifted it to hospitals and other medical settings, we are saved and protected from the reality of death. It is a messy business and I mean that in the most respectful way possible.

I thank Mr. Wall for his contribution on the religious piece that we have been talking about. I think we have moved as a society. There is a pastoral role that religions of all hues play. Theirs is a voice I would like the committee to hear. We should not be afraid of it because we will not be making our conclusions, or certainly I will not, based on those contributions but I would like to hear them.

I have a question for Ms Walsh. I ask her not to feel she is on the spot. Our guests are courageous people. We are experienced but still get nervous in front of the microphones, believe it or not. I am not putting her on the spot. We are grateful that our four guests have come before the committee to give their evidence. However, my question is based on the other evidence she has heard this morning. She gave evidence about Donal and I was taken, in particular, by the piece around suicide and that the numbers of suicides decreased after Donal's appeal. There is something we need to take away in that regard. Young people need hope. Would Ms Walsh accept, based on the evidence we have heard this morning - and this is my position, as a committee member - that there are some cases where, to use Mr. Ahern's term, the pain is constant and intolerable to the extent that even palliative care does not have the means to relieve it?

Mr. John Wall

On the religious aspect to the conversation, it is important that all voices are heard but I wonder, as part of that, whether the committee should also ask, for example, a non-believer, an atheist, for his or her point of view.

Deputy John Lahart

We will do that.

Mr. John Wall

I am not suggesting the committee should do that, by the way. What we are talking about here are medical, ethical and moral issues. If we stray too far down the road of what God people believe in and religious beliefs, whatever they may be, and I respect them all, we get bogged down in the procedural abyss I referred to earlier.

While our beliefs are important in our personal lives, the conversation for the most part in what we are discussing here is just a step above this. It is our personal beliefs and it is about choice.

Deputy John Lahart

I do not think Mr. Wall has anything to fear on this. We have heard evidence of the slippery slope. It appears to have happened in some countries. We have also heard evidence of some countries where it is very strictly controlled and where it is confined to end-of-life issues. It seems incontrovertible from the witness testimony we have heard that there are some jurisdictions where what was intended is not what has transpired. This is not what I want here. To come back to an earlier point, I was very taken with the Swiss model. Dignitas representatives came before the committee and explained that palliative care professionals take part in its model of end-of-life care. I want to put this on the record. Palliative care professionals are very much part of it.

I do not know anybody in my lifetime who has died on their own terms, to be quite honest. We do not come into the world on our own terms and that is for sure. I really do not know of anybody who has died on their own terms. Mr. Curran might want to say a little bit more about what he meant. With regard to the meeting in the Teachers' Club we have a lot of committee meetings tomorrow. I would like to get there if I can but I ask that Mr. Curran keeps us up to date on it.

I asked the secretariat to circulate a story that had appeared on this issue and Mr. Ahern reinforced it in his testimony. This is with regard to the absolute abject loneliness of the final journey. If we legislated to some degree, and in my view it would be very narrow, Mr. Ahern would not have had to do what he did. He would have had friends, family and support mechanisms. He would have been in his own country and his own home surrounded by his own people. I am sorry that he had to experience what he did. This has certainly struck me very forcibly.

Ms Elma Walsh

It does happen that people have intolerable pain. I am not a palliative care doctor and I am not a doctor. For the whole of society and for the common good of society this legislation will have to be cancelled. I know it has not been decided yet but when it is decided and when it goes ahead can it be guaranteed that whatever goes ahead will be watertight in five or ten years' time?

Deputy John Lahart

This is Ms Walsh's concern.

Ms Elma Walsh

This would be a major concern.

Mr. Tom Curran

I do not think anybody can guarantee anything. We are human and no matter what we do we will use our own thought process to put something in place. The advantage we have here is that this issue has been ongoing around the world for quite some time. It has really become an issue because of medical science and advancements. People are living a lot longer and are likely to end up in the final period of their life with some disability, disease or illness. We can look at all of the other countries and certainly avoid the mistakes they have made. We make our own rules here in Ireland. As my mother used to put it, "Just because Johnny put his finger in the fire does not mean you have to". We do not have to do everything that everybody else does. We can learn from what they have done. We have this opportunity because we are coming at it from way behind. The opportunity is there to look at the jurisdictions where it has been introduced. If they have made mistakes and have had to correct them then we do not have to make those mistakes. We should be in a better position to get it right the first time but there is no guarantee. There will never be a guarantee that any law or Bill is perfect. It is impossible to give an assurance that it will never change.

With regard to people dying on their own terms, what I meant was people making a choice for themselves as to a particular point in their life meaning they do not want to have it.

That was the situation with Marie. That is what I meant by people dying on their own terms.

An Cathaoirleach

I thank Mr. Curran for the clarification.

Mr. Garret Ahern

I will be as brief as I can. The changes that have taken place in this country over the past number of decades have done more good than harm for us as a society and country. I refer to allowing contraception for women and giving them control over their reproductive rights, and the referendums on divorce, marriage equality and, perhaps more controversially, abortion. Including the robust safeguards I referred to, such as excluding vulnerability, old age and disability and restricting this option only to terminal illness at the end of life, seems as robust a process as you can get. If a process were introduced with those safeguards in place, or with any other safeguards that may be suggested, it would prevent any slippery slope and would be of benefit to the many thousands of people who die in suffering and pain in this country each year.

Ms Elma Walsh

Some of the existing legislation Mr. Ahern mentioned has already been relaxed. Amendments have been made to relax the original legislation. In many of the countries where euthanasia and dying with dignity legislation have been brought in, those laws are being relaxed. In the cases I hear about at any rate, they are not as tight or strong as they were. The laws have all been relaxed.

Deputy Pa Daly

I do not have many questions but I will make a few comments. I thank all the witnesses for attending. One thing on which I agree with all of them is that the recommendations the committee will make will require very difficult decisions. Even listening to the comments made by Mr. Wall, Mr. Curran and Mr. Ahern, there does not seem to be unanimity on how we should progress this matter and take it into the future. Mr. Ahern is saying assisted dying should be restricted to cases of terminal illness and end of life, which may not be what we are hearing from the other two speakers.

I welcome all the witnesses and thank them for sharing their experiences. It took great courage to do that. I do not know Ms Walsh very well but she is from my own home town and I am aware of the good work being done and Donal's legacy in the community, working with schools, hospice and palliative care. I compliment her on the work she has been doing over the past ten years.

The committee has already had discussions on the ethical, legal and constitutional side of things. We have also heard about the Dutch and Swiss experiences, which are not on all fours with each other either. I was struck by a comment made by a representative of Dignitas that nobody wants to die but nobody wants to live like. That was how he summed up the issue and I thought it was very telling.

I agree with Mr. Wall that we should explore every avenue and have a full and frank discussion about all the various forms that assisted dying takes. I do not necessarily agree that the religious narrative has come into the conversation in this committee. I certainly have not heard it and do not think it is particularly relevant. We had discussions on who was invited to attend and I am not in favour of excluding anyone just because he or she has a particular world view or religious view.

Mr. Wall used the term "so-called slippery slope". Even the representatives from Dignitas and those who spoke about the Dutch model have conceded that there has been a broadening. While I am not sure I would use the phrase "slippery slope" either, there certainly seems to have been a broadening since legislation was introduced.

I agree with Mr. Curran that there are no guarantees regarding what can happen in the future.

It is difficult, but we will certainly be trying to listen as best we can to everything. We will try to confine it to this issue rather than dealing with any other issues that may or may not be relevant.

A comment was made about palliative care. In the county I come from, palliative care is unusual, because we get much criticism coming into our office about the health services. People take the time to tell us that something is wrong with the healthcare system, whether it is to do with GPs, orthopaedics or the availability of services. On palliative care, however, not only do I never hear criticism of it in the county, but the people contacting us tell us it is the best service they have ever had. It is important to say this. I would not say the people involved make a lot of noise but I would listen to those who are at the coalface and dealing with people. They will be able to speak for themselves, though, because I understand they will be coming to the committee in the months to come.

I again thank all the witnesses for sharing their experiences with us. It is the first time we have had people here who have actually lived the experience of having loved ones who have considered assisted dying or some sort of assistance in easing their way out of this world. I thank them for that.

An Cathaoirleach

I thank the Deputy for that contribution. I call Deputy Troy.

Deputy Robert Troy

I thank our four guests for sharing their very personal stories. While I was not here in the committee room, I was tuned into proceedings in my office upstairs. I listened attentively to each and every one of their stories. I thank them for sharing them with us.

In life, we are all framed or influenced by our own past experiences. Death is something everyone experiences at some stage or another. My personal experience is that sadly I lost two of my siblings to cancer. One was aged 36 and the other 34. To their dying day, both craved more treatment and wanted to live, far more so than they wanted to die. The contributions from the witnesses have highlighted to me the challenges faced by us as committee members as to how we get this right.

Having listened to what has been said, it is fair to say we have three witnesses advocating some form of assisted dying and one who is vehemently opposed to it. Even from those three witnesses advocating some form of assisted dying, the words I took from their contributions include "restrictive", "safeguards", "robust" and "the Swiss model". I do not think, therefore, that anyone is advocating for a model such as that in use in Belgium, where all that is needed to avail of assisted dying is for someone to be 74 years old. What is being advocated is a restrictive and robust model with safeguards, predominantly for people who have end-of-life, terminal illnesses. I ask the witnesses to correct me if I am wrong when they next contribute.

As someone who does believe in offering a choice to people, I am struck by the question of how we can bring in this type of restrictive and safeguarded model, one that does not start off at A and then moves to B in a short space of time. I say this because, unfortunately, whether we care to admit it or not, the experience we are learning from, as recounted by contributors in previous meetings, is that assisted dying does broaden over time and becomes a normalised part of life. Perhaps this is something people may be comfortable with but it is not something that sits very comfortably with me.

I can see in certain cases where one would very compassionately see that it would be the right thing to do. I was struck, however, by one of the examples Ms Walsh gave. Even in a restrictive model, with robust safeguards in place, doctors do get it wrong. Donal was not to see Christmas or Easter, but he did see them and he had a much better experience.

Only recently, my own friend's father received a diagnosis that he would not see another Christmas and he went on to see a second. Even if a very restrictive, robust framework is put in place, how can we be 100% sure? I will ask Mr. Wall, Mr. Curran and Mr. Ahern to answer on this. How can we be 100% sure that the diagnosis will be accurate and that we are not robbing people, unintentionally, of some quality time on this earth with their loved ones?

An Cathaoirleach

I thank the Deputy and for sharing his personal experience.

Mr. John Wall

On how we can be 100% sure, I cite my own case as an example. The last time I asked the question how long I was going to live, I was given up until last January 12 months. That is a prime example of someone getting it wrong because I am very much still here and I am, thankfully, very healthy. So why am I advocating? It is very simple. I look at my own situation and diagnosis and ask myself how I want my life to end naturally. I do not want to die but I am thinking of a time at the latter stages of a terminal illness where needless suffering can be prevented. I think Deputy Daly suggested earlier that Mr. Ahern was the only one advocating in terms of terminal illness; I do also, but in the latter stages. In a very hypothetical scenario, I would advocate that I would apply for something or express an interest that at the end of life, I would like to pass peacefully. My wish is to pass naturally in 40 years' time or whatever, and not before then. However, if it ever happened, I would like to be able to express a wish while I was completely compos mentis and I had the capacity to consent. It would be up to others to decide whether that wish of mine would be appropriate. However, I must emphasise that this is at the latter stages of a terminal illness when life is absolutely not guaranteed and, to be very blunt, it is blindingly obvious that the end is very nigh. That is the sureness and being as close to 100% as you can ever get.

Ms Elma Walsh

I cannot see a guarantee, to be honest. As I said earlier, the countries we see have relaxed their laws. I cannot see a guarantee where it could be as restricted as the Bill that will be brought in from day one. Then, being Irish, we will change it; that is just in our nature.

Deputy Gino Kenny

I thank everyone for sharing their testimony today. What we are talking about is a difficult thing to do. As a committee and as legislators, we are trying to grasp and understand the issue of assisted dying and hear each other.

First, I want to remember some people who probably would have been here today. Brendan Clarke was meant to give testimony today but unfortunately he passed away in August. Vicky Phelan would have loved to have been here. She was so passionate about this issue. She spoke to myself and to Mr. Curran and Mr. Wall about her circumstances. Vicky has been a catalyst for many things, including her support for the Bill in 2020. That is important in people’s understanding of what assisted dying is and for people trying to understand why people should have a choice. Vicky always said, “Walk in my shoes” and encouraged people to think about what they would do in her circumstances. I have said many times that some people with a terminal illness will never want to avail of assisted dying, even if it was legislated for tomorrow.

However, there are some people who want the choice and to have control. I have very personal experience of this. We all have experiences of issues such as this and that is what we are trying to grasp today. Can we legislate in this country, in an Irish context? Yes, we can. We have seen other countries legislate. There are concerns about the parameters of assisted dying. Again, I have stated that it should be restricted to a certain cohort of people who then have a choice. As with all legislation, it will be reviewed. It can be changed over time but that is up to legislators. We are the legislators. We are elected by the people of Ireland to deal with issues that are difficult at times. I support assisted dying but it is a difficult issue to talk about. It is a complex issue but it is important we talk about it and I hope we can legislate over time.

A number of other people have passed away who were huge advocates for assisted dying such as Marie Fleming who I think was the catalyst ten years ago. There was also Bernadette Forde and Gaynor French. They were among a number of people, who I did not know personally but whose cases I knew of. Their personal testimonies and their circumstances have been the cutting edge of why we are having this debate, why we are here, and why we are thinking about this issue. I hope the law will change.

My allocated time is short but it is more important to hear from the witnesses. For balance, what would the witnesses say - in a minute or less - to legislators who have not made up their minds about this issue? I will ask the four witnesses to respond.

An Cathaoirleach

We will start with Mr. Ahern.

Mr. Garret Ahern

This is an issue that will impact us all. It is an issue that will impact our loved ones. It is a matter of choice. All of us have but this one life. My wife wanted to live her life for as long as she possibly could. She loved it. Living with a terminal illness means you live every day to its fullest. She would have wanted more time and more treatments. However, despite enormous advances in treatments and palliative care that quality of life she would have settled for, even the simple small things in life - being able to sit in the car while we went for a drive to the beach - were no longer available to her. All that was there was constant pain. I did not want my wife to have to die. I did not want to have to accompany her in such a manner. I did not want to endure what I had to endure. I would have given anything to change that but the medical advances available did not allow for that to be the case. In the case of people who are going through such pain and suffering, I appeal to the undecided to listen to the heartfelt stories of all of us here. Please take all of those contributions on board when deliberating.

An Cathaoirleach

I thank Mr. Ahern and call Mr. Curran.

Mr. Tom Curran

What I would say to them is that it is about choice. If someone does not want that choice, that is find but if somebody else does, do not prevent them from having that choice. The unfortunate thing is that while we talk about it here and during the ten years since the court case and Marie's death, this thing is going on. We cannot push our heads under the sand. Silvan Luley from Dignitas was here and mentioned the number of people who have travelled from Ireland that Dignitas have dealt with. Dignitas is only one clinic. There are lots of people travelling from Ireland but there are also a lot of people taking this issue into their own hands. An example, and I suppose proof of that, is the Canadian man who was recently arrested for sending out product which was a perfectly legal product but the purpose of the product was end-of-life. When he was arrested they found his distribution list. He was doing it out of the goodness of his heart because this was not available to people in places such as Ireland. When they found his distribution list, there was a number of elderly people from Ireland who had bought from him.

Therefore, people are taking this into their own hands while the Government sits back and does nothing about it. It is ten years since Marie died. Is it not time to get off something?

An Cathaoirleach

I thank Mr. Curran. I call Mr. Wall.

Mr. John Wall

I echo the views of Mr. Ahern and Mr. Curran on choice. To use myself as a first-person example of what life is about, I am terminally ill and live with stage 4 cancer. I live very successfully and my life's mantra is carpe diem. Since I was diagnosed, I have fought with every fibre of my being to stay alive, and I have no desire to pass away. I, like many terminal patients, can look forward to a healthy life, and extended life, because of the advances in medicine. Since I was diagnosed, there have been incredible advances that allow me to live the life I lead, but at the end of it I just do not want to suffer. Passing away peacefully is my desire, and naturally I would prefer not to have any intervention whatsoever, or intervention only should the need to arise to avoid unnecessary suffering. That is all that we ask; it is about choice.

An Cathaoirleach

I thank Mr. Wall. I call Ms Walsh.

Ms Elma Walsh

In the ten years since Donal passed away, we have gone to schools two to three times per week throughout Ireland, North and South. The Department of Education has books about Donal in schools at both secondary and primary levels, both in the North and South of Ireland. Therefore, the Department is promoting Donal's LiveLife message and the Department of Health is eroding it. The same Department of Health invested in Donal. It invested in nine months of chemotherapy and a partially prosthetic leg for him. It invested in a lung operation and four more series of chemotherapy for him and in his palliative care unit. What I am saying is that we are diminishing the value of life if we go ahead with this. On the one hand the Department of Education is promoting Donal and on the other hand the Department of Health is going to go ahead with what is proposed in this Bill, if it is passed. The latter Department is diminishing the value of life by introducing this Bill.

An Cathaoirleach

I thank Ms Walsh. We will now move to the next round, which will be brief because I have to keep my eye on the clock. I call Senator Mullen.

Senator Rónán Mullen

Maybe I will pick up on where Mr. Curran left off. We are all trying to do our best here. One talks about people sitting on the pot, so to speak. Mr. Curran did not mention the pot but if there is that sedentary dynamic, it is because people are afraid of the consequences of what they might open up. It is not just Ireland that has not legislated; most jurisdictions in the world have not. Britain, which many would call a very liberal country in many ways, has been wrestling with this and there is still a concern.

In a way, the phrase "slippery slope" is not nice because it sounds very imprecise and associated with some kind of glib argument, but if one tries to put flesh on it one concludes it reflects the concern that things will change in a way that goes beyond just acceding to the person's choice. If we could address an individual's choice and be sure of no consequences for others whose lives might pan out differently if this step were not taken, the argument would be much more clear-cut in people's eyes. However, the concern is that things do change. There are people who do not want to pay for complex health treatments and there are bean counters in the system. There are reported cases, in places like Oregon, of where people have been told by their insurance companies that their cancer healthcare would not be covered but that assisted dying was facilitated and paid for under their plan. Therefore, at its essence this is a discussion about whether what is proposed could be implemented in a way that would never impact upon other people or whether there are people who would opt for assisted suicide who would not do so in other circumstances. I do not believe anybody is coming at it from a dogmatic perspective.

I agree with Deputies Lahart and Pa Daly. Everybody is entitled to their deepest beliefs about the meaning of life. Insofar as people have a faith reason, it is often down to the pastoral. It is about how to pursue the common good and help people's welfare in the final analysis.

Mr. Curran is strong on choice. In Switzerland, a reason is not asked for so for that reason, there is no change in the Swiss situation. A person has it for the asking. If I am not mistaken, they only verify consent to see that there is no vested interest in the party bringing it about. For that reason, we are not going to have the social slippage and the issues Professor Theo Boer worried about whereas if we bring it in and we talk about safeguards, the first thing to go might be the safeguards. That is the problem. If we bring it in without safeguards, we need not expect slippage because we have gone to a full choice model and, therefore, the person who has depression or a disability cannot be denied the request.

Mr. Tom Curran

Is that the model in Switzerland?

Senator Rónán Mullen

It is the model in Switzerland.

Mr. Tom Curran

A person has to be capable of making and understanding the decision.

Senator Rónán Mullen

That is agreed but his or her decision does not depend on his or her being terminally ill or anything like it. A person might have depression - and I know these are sensitive issues to talk about - but be 100% in charge of his or her own mind.

Mr. Tom Curran

We already have that here since 1993.

Senator Rónán Mullen

Not as a right. This is the problem. We still-----

Mr. Tom Curran

It is a legal right.

Senator Rónán Mullen

We still say in our society that that suicide is always a tragedy and never to be encouraged.

Mr. Tom Curran

Of course.

Senator Rónán Mullen

So it is not a legal right. It is something we do not prosecute but I do not think any of us would want the message going out from us as members to suggest that it is a right.

Mr. Tom Curran

I have to disagree with the Senator. The court ruled that it was a legal right.

Senator Rónán Mullen

I do not believe that.

Mr. Tom Curran

Please go back and read it.

Senator Rónán Mullen

I do not believe the word "right" has ever been used regarding suicide in Ireland.

Mr. Tom Curran

It was used as far as the discriminatory fact regarding Marie Fleming was concerned in that her illness prevented her from having the same right an able-bodied person would have.

Senator Rónán Mullen

We might return to that at another time because we did go through this with our legal and constitutional people as well. If there is that reality that vulnerable other people will end up feeling pressurised into taking their lives be it as a direct result of an unsympathetic family or an unsympathetic State in the future that does not want to fund advanced healthcare necessities or as the result of social pressure that leads them to think "I shouldn't be getting in the way of society. My time has come", would Mr. Curran be concerned if this so-called slippery slope scenario became a reality? Would it change his view?

Mr. Tom Curran

Of course, I would have concerns and I have current concerns about situations like that but that is an indictment of our society. It is society we should be looking to change in that regard. If society is putting pressure on people to think that they are worthless and should not be here, it is society that is wrong but should that lead us to deny it to everybody?

Senator Rónán Mullen

That is the core question. Is it about more than individual choice if other people are affected because we will not get the perfect society and the perfect well-funded and compassionate healthcare system? Not a day goes by in here where the inadequacies of the healthcare system are exposed. It is not just an Irish problem and that will continue so in that context, the question is whether we are in particular danger if we legislate for euthanasia or assisted suicide.

Mr. Tom Curran

I do not think we are in particular danger. It is a problem but it is a problem society needs to address, irrespective of assisted suicide. If we are making people feel they are a burden, it should not happen, irrespective of whether assisted suicide exists. Society needs to look at that.

Senator Rónán Mullen

If Mr. Curran was told that given the inadequacies of our healthcare system, a change in the law in this area would have the effect of funnelling more people towards that aspiration to have their lives ended, would it trouble him?

Mr. Tom Curran

I do not believe that.

An Cathaoirleach

I have to bring in Mr. Ahern because I have to spread it around.

Mr. Garret Ahern

A comparison between our healthcare system and the US healthcare system, which is primarily based on whether people have private healthcare insurance and if they have not, they can go somewhere else, is perhaps unfair.

However, I understand and trust the point the Senator is trying to make.

On legislative concerns the Senator might have, we on this side of the room can only relay our personal experiences and viewpoints. We are not medical or legal professionals. This is just a heartfelt honest view, delivered through the lens of the pain and suffering we have experienced, of what we believe, after much thought and introspection, might bring changes for the greater good. We will never have the perfect law, but it is the task of this committee and Members of the Oireachtas to take the considerations of everyone who makes a submission to the committee and try to make the best and most robust fist of this going forward. Let us not let perfection be the enemy of the good. Life is finite and corporeal. We have our dignity to live our lives. I know a great many elderly people who still want to keep going despite their advanced age. There are challenges in the healthcare system. As was said, they are discussed every day in the Oireachtas. If adequate and robust provisions can be put in place to support people with mental health issues, people who are living in isolation or feel vulnerable and people who have disabilities, they may not fall into the thought process of considering this to be an option. I am speaking idealistically now. Is it not the aspiration of citizens and politicians to try to create the best society we can for all our citizens? Again, let us not allow perfection to be the enemy of the good. In the case of terminal illness and untreatable pain, to leave someone in that pain and suffering because we have a concern about some hypothetical situation that might occur in the future does a disservice to a large percentage of people who suffer in this way.

Mr. John Wall

The Senator talked about a lot of what-if scenarios.

Senator Rónán Mullen

It is our job to figure out those what-ifs.

Mr. John Wall

I will help the Senator to do so right now. I talked about the latter stages of a terminal illness, which rules out many of those scenarios. Dare I say it? I do not like to use the word "scaremongering" but there is an element of it in some of the examples cited when in fact they would not even be applicable to a terminal illness. Even the name of this committee is the Joint Committee on Assisted Dying, yet I have heard the word "suicide" more often today than I have in the past six months. We are talking about assisted dying. If we mention the word "suicide", it is important to mention it in context. As I said in my opening submission, just throwing it out is very disrespectful to those who, unfortunately, have taken their lives by suicide in dramatically different circumstances. To help us all, context is everything. Sometimes we just need to take a step back and collectively bring the conversation back to where it started, that is, the end of life and terminal illness. If we need to take it from there that is okay, but if we keep citing examples and what-if scenarios, we will never get to an end point where we will be happy or where there will be collective agreement on a solution to the debate.

Senator Rónán Mullen

I am listening to Mr. Wall. The person to his right is not throwing out the word "suicide", and nor is anyone here. It is a real concern. In fact, something the committee has scrutinised and will scrutinise carefully is the question of what the impact would be if we legislate to give people we deeply sympathise with the choice to have their lives ended and whether it would change the attitude among others about whether they should also end their lives or have State support to do so.

Nobody is throwing that out. We are looking at other countries. We are looking closely at what happens to suicide rates, assisted and non-assisted, where it exists. The picture is not reassuring in terms of the impact. We must look at all the issues and even though people might find some of the words difficult, we must look at things bluntly and full-on if we are to do our job for the people.

Ms Elma Walsh

All three people on my left have said that it is literally at the very end of life when there is nothing that can be done that they want it. Who can guarantee that will happen? Who here can guarantee that it will stay at that and that nobody else will get to benefit from the assisted dying Bill that will come in? That is my big worry. Who is to say who is at the end of life? Whose job is that?

Mr. Tom Curran

Could I just say something? I certainly did not say anything about end of life because it is something I do not necessarily agree with. In my own particular case, in the situation with Marie, we were asked for a medical opinion when we went to court. Her neurologist, Mr. Tubridy, was asked exactly that: what was his prognosis of how long Marie had to live? His very words were: "two weeks", "two months", "two years" and "maybe 20 years". So Marie would not have qualified under the six-month rule.

It is not about end of life; to me it is about choice. It is about when a person decides that their illness or something has got to the stage where life has nothing left for them. For instance, in Marie's particular situation, the only parts of her body that she could move for years before she died were her mouth and her eyes. She could not use anything else in her body. That is dignity. It is not just about aid or about end of life. It is about a choice as to when you feel that your life has ended.

Deputy Gino Kenny

I thank the witnesses for giving their testimony today. I want to speak about the impact of not legislating. We have seen the consequences of that. Garret's wife had to go to Belgium. Had Vicky Phelan been able to avail of assisted dying in Ireland, obviously it would have been easier or, let us say, less traumatic. There are other people in circumstances where this has not been legislated for, where they have taken their own life or they have been in situations where they have had a very complicated death and end of their life. I ask anybody who would say that a person has to go through the trauma of that pain or would deny somebody who does not want to go through months, weeks or days, to reflect on the situation. Why should someone not have a choice regarding his or her own life? I hope it will be legislated for in Ireland and, if it is, I do not think the sky is going to fall in by any means. It can be complementary to our very good hospice and palliative care services.

In the time I have I would like the witnesses to comment on some of the issues that arise in terms of the impact of not legislating.

Mr. Garret Ahern

The Deputy should bear in mind that my wife's trip to Belgium came after a very substantial overdose in February. My wife's planning of the trip to Belgium was done entirely by her, although she was in great emotional distress, to avoid any legal consequences that might have befallen me.

My wife took an overdose one evening. I went upstairs to check on her. I kissed her goodnight and I went back downstairs to sleep on the couch because she was in so much pain she could not bear to have me lying there next to her. It caused her physical pain. She would lie awake at night, crying in her suffering, crying facing the end of her life.

She just wanted to be alone in that isolation. There was no prognosis of recovery. It was terminal. It was in the final stages. How do I know it was terminal and in the final stages? She could not walk. She could barely eat. She could barely drink. She was losing her hair. She had no energy. One does not get better from this. This is heading in only one trajectory. That suicide attempt was unsuccessful. I am glad of that. I am glad I had the remaining weeks with my wife to support her and to reassure her of my unswerving love for and duty to her. My wife could travel to Belgium because she was a Belgian citizen. It made life so much easier. She had a Belgian address. She had a Belgian GP with whom she could reconnect. For people who do not have that facility available to them, how many of them take their lives by suicide and are successful in the attempt? I say "successful", but the consequences of suicide are rarely as we intend. They can be quite unpleasant.

An Cathaoirleach

Are you okay, Deputy?

Deputy Gino Kenny

Does Mr. Wall or Mr. Curran want to comment on that?

Mr. John Wall

I am so taken by Mr. Ahern's recounting of what happened that I have completely lost train of thought as to where the Deputy-----

Deputy Gino Kenny

I asked about the impact of not legislating.

Mr. John Wall

It is initially a massive missed opportunity. As Mr. Ahern said, how many people succumb to having to resort to other methods, however, whatever or wherever they may be, because something is unavailable?

I have seen good friends pass away. I have seen good friends suffer completely unnecessarily. We ask the question, when do you know the end is nigh? How do you legislate for that? How do you put that in writing? I am not sure if there are medics among us. That is something for the medical community to decide. Sometimes you do not have to be a medic. I have sat with people for whom, barring an absolute miracle of monumental proportions, it was literally a matter of days. They are the people I look at, and I am thinking of one couple in particular. It was absolutely harrowing to watch. Everything that could have been done was done. This is an opportunity for all of us to make that transition from this to wherever the next is going to be, to make it something dignified - a dignified passing, a dignified death - bearing in mind that it is not just for that person but also for their loved ones and their family members. Regardless of what side of this debate we are on, I do not think any of us want anyone to suffer needlessly at that point in time, when passing is absolutely inevitable. If suffering can be avoided, it is up to us to ensure that happens.

An Cathaoirleach

Thank you, Mr. Wall. Mr. Curran, do you want to make a brief comment?

Mr. Tom Curran

On the consequences, if the law is not brought in, things will stay the way they are. People will still travel to Switzerland, which is a difficulty for them, and in a lot of cases, because, as Mr. Ahern said, people may not be capable of organising themselves, they put other people in danger, including in danger of prison, and that puts an awful lot more stress on the person making the choice, like me - or people will continue to circumvent the law to provide that for them. Nobody wants to have to travel outside the country to die. There was a poll done with the Irish Hospice Foundation some years ago that found that more than 87% of people wanted to die in their own bed, in their own home. Unfortunately, that does not happen because people tend to get rushed to hospital and die in acute hospitals, which is not the best place to die either, but people want to die in their own home. As was said earlier, we have sanitised and medicalised death. Death is not a medical procedure. Death is part of life - it is the end of our life - but we have made it clinical.

We need to bring it back to the situation where this is about a person's life and about his or her choice. If we do not legislate on it, it will be like abortion, with illegal abortions, back-street abortions and people travelling outside the country for them. Is that what we want to continue?

An Cathaoirleach

I thank Mr. Curran. I call Ms Walsh.

Ms Elma Walsh

The Chairman mentioned a few names there earlier on, and God be good to them. I have the utmost respect for those people who passed away and the utmost respect for their survivors, the families and everybody, but the Chair did not mention the thousands who have availed of palliative care and who have had good results through palliative care. That is something to take into consideration. Every day thousands of people throughout Ireland who avail of palliative care have a successful passing with palliative care. Donal died at home with the help of his palliative care team. He did not go into hospital or anything. He died in his own bed. That has to be taken into consideration as well.

An Cathaoirleach

Each of the witnesses' evidence and testimony here today has been very powerful. We appreciate it more than they could possible think. We really do. On behalf of the secretariat, the members, both here and online, and on my own behalf, I cannot not say thank you enough. We needed to hear from each one of them today.

Obviously, we have heard from a lot of people already and we have a lot of evidence to hear over the coming weeks and months. However, from my point of view, and I know from that of the members, today's evidence was certainly very powerful and I thank the witnesses very much.

This public meeting is adjourned until Tuesday, 17 October.

The joint committee adjourned at 12.57 p.m. until 10.30 a.m. on Tuesday, 17 October 2023.