Joint Committee on Assisted Dying debate -
Tuesday, 7 Nov 2023

Protecting Autonomy and Assessing Decision-making Capacity: Discussion

An Cathaoirleach

Apologies have been received from Senator Annie Hoey.

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 webpage.

Our agenda item today is engagement on the topic of protecting autonomy and assessing decision-making capacity. On my behalf and that of the members, I warmly welcome Dr. Caroline Dalton, a member of the healthcare ethics and end-of-life care research cluster in UCC and director of undergraduate nursing and midwifery education at UCC; Dr. Stephen Duckworth, academic, businessperson and social entrepreneur; Dr. Anne Doherty, associate professor at UCD school of medicine, and a consultant liaison psychiatrist; and Ms Janie Lazar and Mr. Justin McKenna from End of Life Ireland. We are grateful to them for appearing before us today and giving of their time.

On the subject of time and because I do not want any more witnesses to think I am being rude, I am letting people know that we are constrained by time. Each witness has their opening slot, after which the members will ask questions. Each member has seven minutes between their questions and answers. The red clock is everywhere. When people see the time coming down, I would appreciate if they could help me. Otherwise we will run over time.

I invite Dr. Dalton to deliver her opening statement.

Dr. Caroline Dalton

I thank the Cathaoirleach and the members and staff of the committee for the invitation to present on the topic of protecting autonomy and assessing decision-making capacity. I do so in the context of my experience as a registered intellectual disability nurse and a lecturer in the school of nursing and midwifery. My PhD focused on end-of-life care supports and decision-making practices in intellectual disability services.

In an Irish context, the ratification of the UN Convention on the Rights of Persons with Disabilities and the enactment of the Assisted Decision-Making (Capacity) Act 2015, has led to a focus on autonomy and decision-making capacity from a societal, governmental, social and legislative perspective. While acknowledging these important legislative changes, difficulties will continue to be encountered in protecting autonomy in a real-world context, specifically where issues with regard to capacity arise. It is this real-world context I wish to focus on today. It is important there is a focus on autonomy, given the interconnectedness of autonomy decision-making and the processes and steps involved in coming to a decision and the circumstances in which that decision is being made.

Many people across all sectors of society will encounter difficulties when making decisions, and the Assisted Decision-Making (Capacity) Act 2015 affirms a functional approach to capacity. This recognises that the capacity of individuals to make a decision may vary depending on the decision to be made and the context in which that decision is made, as in that capacity may fluctuate. However, irrespective of whether a person is deemed to have decision-making capacity, great care and attention must be placed on how capacity is assessed. Safeguards must be in place to ensure an individual’s right to autonomy is protected to ensure people are not excluded from a range of decision-making opportunities relating to their end-of-life care, including where, when and how they would like to die. Conversely, safeguards must also be available to support those who may be vulnerable to pressure or at risk of having their autonomy undermined due to coercive control. While it is important to be mindful of the negative impact of coercive or controlling relationships, it is also important to recognise that positive, respectful relationships can not just protect autonomy but also foster and promote the autonomy and capacity of an individual.

I would therefore argue that discussions relating to autonomy should not just be linked to assessing decision-making capacity. This is too narrow a focus, given the importance of decision-making capacity within the context of all aspects of end-of-life care, which may extend to assisted dying. The scope of the discussion needs to broaden to view capacity as a constructed state. Capacity is not simply a characteristic to be assessed but one that needs to be encouraged, promoted, fostered and supported. Supports must therefore be provided to enhance a person’s capacity and address issues which might impede a person’s capacity. These issues cannot be viewed solely within the context of the individual themselves and how they are making that decision but also in the context of the environment in which they live, their support circles and networks, and their access to services.

A continuum of constructive supports reflective of the individual's ability is required. Appropriate policies, protocols and guidelines will need to be developed to support a functional approach to decision-making and ensure it is implemented in a real-world context, not just for the person making these decisions but also for those supporting them in that decision-making process. These supports need to be effective in ensuring a decision is voluntary, that the person is being made aware of all options available to them, that the information is being provided in a format the person can understand, be that augmentative and alternative forms of communication, or any other reasonable accommodations that might be required. The context in which the decision is being made is also of great importance. Has this individual access to a range of supports from which they can choose, such as access to good quality end-of-life care? In essence, the point I am making to the committee is that people need time and access to appropriate resources to ensure their autonomy is protected. Without these, individuals may potentially be excluded from making decisions relating to all aspects of their end-of-life care, including how, where and when they die. I hope the committee will give due consideration to this point in its deliberations. I thank the committee for its attention.

Dr. Stephen Duckworth

I thank the committee for the opportunity to speak today. Before I start, I advise the committee that I am presenting my own views, and not those of any organisations I am involved with.

At the age of 21, 42 years ago, I broke my neck in an accident and am now completely paralysed from the neck down and doubly incontinent. Since then I qualified as a medical doctor, gained a PhD in disability and equality politics and an MSc in rehabilitation studies. From the time of my accident in 1981 until 2010 I was fervently opposed to assisted dying and wrote letters that were published, accordingly, in the disability press. I then joined the Commission on Assisted Dying chaired by Lord Charlie Faulkner. On the basis of the evidence we heard over that 12-month period, with additional specific commissioned research and visits to four locations offering assisted dying in other countries, I changed my mind. I changed my mind based on the evidence and only with stringent safeguards.

I now believe that the opportunity to celebrate ourlife, to say goodbye to the people we love and to slip away peacefully on our own terms and avoiding unnecessary pain and suffering is the only feasible humane option.

I have been an electric wheelchair user for 40 years and enjoyed the choice and control over my life thatdisabilityactivists, including me, have campaigned for, year after year. Yet some of those activists, who have considerable influence, are now arguing that I should be denied that choice and control over one of life’s most important events, that is, the dying process. They can exercise their choice but I cannot exercise mine. I am not terminally ill, but one day I may be. I am not scared to die but I want choice and control over how I manage that dying process. More than 206 million people live in places around the world where legislation enables them to do that but it is not an option in this country or in Britain. The UK and Ireland uphold a blanket ban on assisted dying despite three quarters of the public supporting this option being made available. Support for this type of law is similarly high, if not higher, among disabled people. I am proudly among that number of disabled people and believe that a safe and compassionate assisted dying law is long overdue.

I know that transparent and stringent safeguards for assisted dying legislation and protections for disabled people can coexist and work effectively. In Oregon, for example, a tightly restricted assisted dying law has been in place for over 24 years. A strident activist organisation of disabled people, Disability Rights Oregon, claims it has never received a complaint of abuse or attempted abuse under the Oregon Death with Dignity Act. Meanwhile, it has provided choice and compassion to a great many dying Oregonians and the legislation has worked so effectively that it has since been replicated across the US, in Australia and now in New Zealand. This is the model that I and many others believe is right for Ireland and the UK too. I do not subscribe to the approaches used in Canada, the Netherlands or Belgium, which have become much more liberal.

I also recognise that the current law contains far more risks for vulnerable people, and that includes me and millions of other disabled people. The reality is that prohibiting assisted dying does not make it go away and there are currently no workable safeguards to protect disabled people from coercion and pressure to use other means if the status quo remains. It simply forces dying people to suffer against their wishes or resort to unimaginable actions to control their deaths, often in secret, without the possibility of open conversation or exploration of other potentially beneficial options available through palliative care. It is not possible for me to forget the evidence we heard at the commission about a woman who resorted to drinking 3 l of bleach. It took her ten years to die in unbearable agony.

Currently, for those few terminally ill people who can afford it, there is Dignitas in Switzerland, but this involves putting their loved ones at risk of prosecution, travelling to a foreign country and often dying before they are ready because of the travel restrictions for severely disabled people on aeroplanes.

For those without the funds, some may be able to refuse treatment that is keeping them alive and be sedated while their disease consumes them, or while they starve or suffocate. However, this can involve a long, drawn-out death with no guarantee that suffering can be relieved. The only choice remaining is to take matters into their own hands. These deaths are often violent and painful, can involve multiple attempts, and cause untold devastation to those left behind. The doctrine of double effect caused by continuous deep sedation with opiates is also extremely important. It essentially renders patients unconscious until they die from respiratory failure.

Dr. Anne Doherty

I thank the Cathaoirleach and members of the Joint Committee on Assisted Dying for inviting me to contribute to this morning's proceedings. In this opening statement, I will focus on my clinical experience of working with people who have expressed a wish to die, including those with incurable or life-limiting conditions. I am confident that everyone in this room shares a vision for the highest standard of end-of-life care, one which prioritises access to necessary treatment, supports the avoidance of suffering and offers the highest levels of dignity and autonomy.

I am a consultant liaison psychiatrist. Liaison psychiatry is the medical specialty for the integrated care of people with mental and physical health problems together. I currently have two areas of specialist work. I am the local clinical lead for self-harm and suicidal ideation and as part of the psycho-oncology service, I provide mental healthcare to people with cancer.

Ireland has had notable success in reducing suicide rates in the past decade. While it is difficult to attribute this to any one factor, it is likely that the clinical programme for self-harm has impacted those rates. The programme is based on the framework that no problem or set of circumstances is unsurmountable and that, with good mental healthcare, suicide can be avoided.

The psycho-oncology programme of the national cancer control programme was established to meet the mental health needs of people with cancer. As part of this programme, I work as part of a team treating people with mental health challenges, including severe depression and people who want to die. Not everyone who has thoughts of not wanting to be alive is necessarily suicidal. Emotions such as helplessness, physical symptoms, mental health symptoms and deficits in social care provision can all contribute to a varying degree and every individual's experience is different. Thoughts of not wanting to live can range from a passive death wish, where the person feels it might be good if they were to die in their sleep, to thoughts of suicide, to plans for suicide and suicidal acts. The palliative care literature also describes the wish to hasten death, which has similarities to what we in psychiatry call a "passive death wish".

I have treated countless patients with cancer who have had suicidal thoughts. This is not unusual, according to the literature. In my experience, with a compassionate approach and the highest standard of mental healthcare, we can treat these problems and restore quality of life. The scientific data note that depression is very treatable in people receiving end-of-life care, with high recovery rates.

Speakers who have addressed the committee in previous sessions have been clear that those with mental illness will be excluded from such legislation. However, these types of laws in other countries, such as those in Queensland, Australia, are founded on the basis that the person is experiencing intolerable suffering which cannot be relieved. Can mental distress be as severe as physical symptoms in terms of quality of life? Yes, absolutely, and this is why in Canada a court challenge has resulted in a change in the law to allow people to access assisted suicide on grounds of mental illness alone.

This session is entitled, "Protecting autonomy and decision-making capacity". Is it possible to have robust safeguards that would prevent someone with a treatable depression from accessing assisted dying? The Danish Council of Ethics had doubts about the feasibility of this, stating in its recent report that it was "in principle impossible to establish proper regulation of euthanasia". People can have a significant depression, with symptoms which include low mood, hopelessness, negativity towards the future and a wish to die, without necessarily lacking mental capacity. However, in such a case the person’s low mood will certainly affect how they think and how they experience emotion. It is hard to know how we would robustly ensure that a person in this situation would receive necessary mental health treatment if they had an entitlement under the law to assisted dying. As well as mental health conditions and cognitive conditions, there are a range of psychosocial factors which might impact decision-making, such as coercion and elder abuse.

In last year’s systematic review, we examined the relationship between suicide and assisted dying, intrigued by the argument that assisted dying would in fact reduce suicide rates. We found that in countries where any form of assisted dying was introduced, there was no overall reduction in self-initiated deaths and that overall suicide rates did not significantly change. In Oregon and Switzerland, the research reported a significant increase in older women seeking assisted dying and dying by suicide. This is concerning because older women have high rates of depression.

This raised the question of whether these deaths were being driven by potentially treatable depressive illnesses being left untreated and whether there is a gendered impact influencing this.

Mental health awareness and access to supports have improved in recent decades, but there remains ongoing stigma towards mental health challenges in our society and mental healthcare receives less than 6% of the health budget, compared with 12 to 13% in comparable countries. We need to address this and ensure we are providing the highest standard of healthcare, both mental and physical, and that people have full access to adequate palliative care and mental healthcare. It would be a travesty if assisted dying became a substitute for assistance in living.

Ms Janie Lazar

End of Life Ireland greatly appreciate the invitation to present today and also the naming of this committee. Language matters and assisted dying is not the same as suicide. We want to work with Government and contribute to the enactment of legislation that draws on our lived experience and that of our supporters and to facilitate access to best practice across the global network of voluntary assisted dying experts. Everything begins with a conversation. Awareness of the work of this committee and the topic of assisted dying is important and deserves as wide an audience as possible. It is why we run public meetings with representatives of Irish doctors who support patient choice and with Tom Curran, whose journey with his life partner, Marie Fleming, and the outcome of their Supreme Court case mean the Oireachtas has the authority to legislate for assisted dying. Our work as a volunteer-led advocacy group highlights the need for proper information and a strong will to see this legislation introduced, as the June Red C poll also indicated, with 76% of us wanting to see legislation for assisted dying, and not just for the terminally ill.

Voluntary assisted dying and palliative care - which we fully support - are not mutually exclusive and they can and do work together, though in 4% of the cases, palliative care does not and cannot relieve all suffering and all pain. People do not hear enough about the immeasurable peace of mind that comes with knowing legislation exists and improves one's quality of remaining life, whether that choice is exerted or not. Gaynor French, who had metastatic breast cancer and campaigned right up to her death in 2018 at the age of just 48 years, said if she could control the time of her passing she would waste no more of her life being afraid; she could live.

Every day I talk to dying people, families who have lost loved ones, legislators, medics and representatives from advocacy and allied groups. Alongside the stories of suffering and difficult deaths, there are many stories of good and beautiful deaths, but without legislation the alternatives are grim. Brendan Clarke died of motor neurone disease, MND, in August. He had accepted his diagnosis and imminent death, but he believed strongly in choice and spent his last months speaking out in support of assisted dying. Fairness, respect, equality, dignity and autonomy are the values in the HIQA acronym FREDA. They come from a human rights-based approach and would be a vital part of any legislation and indeed any programme operated under the legislation. Legislation could give individuals the right to be assessed and, if deemed eligible, have the option of an assisted death and such legislation would align with the HSE’s guiding principles of ensuring the safety and well-being of all citizens.

People who choose to have an assisted death make informed decisions and know right up to the last minute they can always change their mind. Jule Briese recently shared with The Irish Times the story of her four-year Alzheimer’s journey with her husband Wayne, who chose to have an assisted death. Wayne was determined right from the start that no one would be allowed to dissuade him when he and Jule decided the time was right. To fully understand why having control over one’s death matters, the lived experience must be heard. Dementia cannot be excluded from this conversation. Capacity, especially with regard to the advance healthcare directive, could also include a path for dementia and neurodegenerative conditions, which Mr. McKenna can address later in the question-and-answer part of the meeting.

We have seen legislation introduced on complex societal issues, including same-sex marriage, abortion and divorce. Not only has Ireland endured, we have emerged as a more pluralist and tolerant country. The predictable journey towards legislation for assisted dying in every country is the same. It is said to be irresponsible and a conflation of societal issues and it is implied that one can just rock up for an assisted death, that it is death on demand, state-sanctioned murder and beyond contempt. This serves only to generate unnecessary fear because every jurisdiction has safeguards, strict procedures and oversight committees.

Do we as a society want to continue exporting problems, as Ireland did with abortion, or to have people travel abroad like furtive criminals to have an assisted death or a loved one risk imprisonment of up to 14 years? We do not. Without legislation nothing changes. “Thank you, doctor” are the words most often heard from a patient about to have an assisted death. The same is true of the patient’s family. I thank the committee for inviting ELOI to contribute today.

An Cathaoirleach

I thank Ms Lazar. Deputy Kenny will be the first member to contribute.

Deputy Gino Kenny

I thank the Cathaoirleach and welcome everyone to today's meeting. We are at the halfway point with this joint committee. It has been very interesting thus far, regardless of what one's position is on this. As Ms Lazar said, Ireland has come a long way in the last 25 years on many issues and one of the issues it has to grapple with is assisted dying. All the indications show we are ready for the debate and that the public would be generally in support of assisted dying if it was legislated for. We are the legislators and that is why we are in this committee today.

My first question is for Ms Lazar and Mr. McKenna. I commend Ms Lazar on all the work she has done over the last number of years. She is a giant with respect to this issue and I appreciate her work and that of End of Life Ireland. The question is a simple one. What are the obstacles to legislating for assisted dying in Ireland?

Mr. Justin McKenna

I will give my background. I am a solicitor, so I see these things from a legal point of view as a practitioner. One of the points I want to make is that while I qualified in the 1970s, it was not until 1996 that we had a law that allowed people to exercise autonomy in respect of their own care in the event that they lost capacity. That was the Powers of Attorney Act 1996. It was Mervyn-----

Deputy Gino Kenny

Taylor.

Mr. Justin McKenna

Mervyn Taylor, of course, who brought it in at that time. He was somebody for whom I had a lot of respect. It changed the way I did my work as we then had some structure. In other words, instead of just listening to people giving me instructions concerning their wills, I could talk to them a bit more about what they should do to prepare for their end by appointing attorneys. In the course of the years after 1996, I must have written hundreds of enduring powers, but it really was only half the story and it was not until afterwards and Ireland's ratification of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, that we needed to move up a notch. The Assisted Decision-Making (Capacity) Act, though passed in 2015, could not be implemented because we did not have the resources or the means, and it took eight years to put those in place.

My answer to the Deputy's question is that we have those structures now. There is an infrastructure in place for people like me, as practitioners, to oversee the undertaking by candidates for end-of-life care to sign off on advance directives in a manner that makes it clear that they know what they are doing, they have been informed and they have correctly communicated that information.

Deputy Gino Kenny

The committee has looked at other variations of assisted dying in different parts of the world. Is there a model that we could look at and try to replicate in an Irish context? There are variations, but is there a system that could be tolerated to a certain degree?

Mr. Justin McKenna

Deputy Kenny is the politician, and that is a political question. There are models popping up all the time. The Isle of Man recently passed a law. It is happening so fast that it is taking other people all their time, from an academic perspective, to examine it. Ultimately, that is something the politicians are going to have to crystallise. From our point of view, we could take a liberal view or we could take a conservative view. I suppose I would be more inclined to take a liberal view and lean towards the patients exercising autonomy. They are the ones we should listen to. A doctor will say that a condition is terminal, but it is the patient who will say whether it is intolerable or if they can suffer it any longer. The means to an end should be in the hands of the patient.

Deputy Gino Kenny

I thank Mr. McKenna. My final question is for Dr. Duckworth. I want to get his thoughts on what has been happening in the Isle of Man. It is a small part of the United Kingdom, as such, but it is quite significant. If part of the United Kingdom legislates for assisted dying, it could have a domino effect.

Dr. Stephen Duckworth

Yes. They obviously have to make their own decisions about their legislation. The legislation has had its Second Reading, as I understand it. Scotland is also looking very closely at this and there will be a Bill coming before parliament in Scotland soon. We are becoming more and isolated in more affluent countries compared to our neighbours. It will inevitably have some influence but it is up to the politicians to decide.

Deputy Gino Kenny

There is a special committee in Westminster at the moment. Does Dr. Duckworth have any updates in regard to where that is going?

Dr. Stephen Duckworth

The report from the select committee has not been finally published as far as I am aware. I did give evidence to the committee on the issues that need to be approached to safeguard the needs of disabled people.

Deputy Gino Kenny

I thank Dr. Duckworth.

Deputy Patrick Costello

I thank the witnesses for coming in and sharing their expertise. Dr. Dalton talked about how capacity is assessed. I run the risk perhaps of ignoring her warning about how it is not just linked to assessing capacity, but I want to dig a bit into how capacity is assessed. We now have the Assisted Decision-Making (Capacity) Act, which has changed things quite a bit. I want to explore whether from her experience Dr. Dalton has concerns about how capacity is assessed in general at the moment and how we can improve that. I know she refers in her submission to the environmental factors and societal factors. I am thinking about how we assess that, because if that is something that impacts on someone's ability to make a decision, how do we assess it when the person making the decision may not be aware of those issues? If it is an outside expert assessing that, how does he or she assess that? Do we run the risk of something objective there? Could Dr. Dalton talk through some of that a bit more?

I also want to follow up on some of Dr. Doherty's points. At the end of her submission she states: "It would be a travesty if assisted dying became a substitute for assistance in living." That is something I agree with, but I am of the opinion that surely we can do both. Her take on whether we can do both would be very welcome. I am conscious that at our very first meeting, the Irish Human Rights and Equality Commission voiced similar concerns about the coercive influence of an ableist mindset.

Dr. Doherty also talks about how the research did not show a decrease in suicide but showed an increase in suicide among older women. Was the research suggesting a causal link between the introduction of assisted dying and the increase in suicide? If the increase in suicide among older women was due to a treatable mental illness, is the issue that the illness was not being treated? Was the lack of treatment a direct result of the introduction of assisted dying? Again, surely we can do both.

Dr. Duckworth mentions a study from 2021. Would it be possible to provide it to the clerk of the committee so that it could be circulated to the members?

An Cathaoirleach

I would like to bring in Dr. Dalton at this stage because she was not in yet.

Dr. Caroline Dalton

The question is reflective of the complexities of being able to assess capacity in any one individual, because when people make decisions they do so for a whole range of reasons. From a rudimentary perspective, assessing capacity is about looking at the individual's ability to make the decision that he or she has made at the time it has been made. There are other issues that come up in terms of fluctuating capacity. People's capacity changes over time and their ability to make a decision will change over time. That will also create issues in regard to the assessment of capacity. When we look at a piece of legislation it depends on whether we are happy that once a decision is made in advance that the decision holds or if the person needs to still have a decision-making capacity at the exact time that the decision is being enacted or acted upon. There is a range of complexities around that. My point about how we assess capacity is linked back to understanding or looking at processes for how we engage in assessment by understanding that there is a whole range of influences that need to be dug down through with any one individual in order to be able to assess how he or she came to a decision, who was there to support him or her, the information provided to him or her, how that information was provided and, to take up the point made by other panellists, if the person is making this decision in the absence of having full access to the level of choice and supports to which there should be access and that we should be providing, including very good end-of-life care. It is about all those factors when we look at one individual case. When we work with one person, it is his or her own belief system and the things that are impacting on the decision because not every decision a person makes is just linked back to what he or she wants for themselves but also in terms of relational autonomy and capacity and looking at those around them as well. Those things need to be captured or thought about when we look at how and why somebody has come to a decision and whether reflecting on all of those we are happy that they have made that decision and that it is fully autonomous, it has not been unduly influenced, and that the decision holds for the individual. There are many complexities involved in identifying how we capture that beyond just looking at whether a person has capacity to make that decision right now and what other background fundamental aspects of life that link back into that.

An Cathaoirleach

I thank Dr. Dalton. I call Dr. Doherty.

Dr. Anne Doherty

I might speak later if I get a chance about the actual nuts and bolts of assessing capacity because it is something I do every day.

On the question specifically around the research from the systematic review of the international suicide rates, in Switzerland and Oregon we saw an increase in the number of deaths of older women. Many of those related to assisted dying. However, in Oregon we found an increase in what I will call "traditional suicide", for want of a better term, by 56%. We do not know why, because this was just looking at trends on a national level. There is much work to be done in digging down into why that is. We know that older women have higher rates of depression. We are only speculating because we do not have the facts, but if this was due to untreated depression, that is something we would be really worried about, because we can treat that.

An Cathaoirleach

I call Deputy Higgins.

Deputy Emer Higgins

I thank all the witnesses for being here with us today. As Deputy Gino Kenny said, we are halfway through our deliberations on a really complicated topic, so we really appreciate the witnesses' expertise and time today. My time is limited. I only have seven minutes, which is to include the witnesses' answers. This is the same as everyone else.

I will put my initial questions to Dr. Duckworth and End of Life Ireland. I find it completely fascinating that Dr. Duckworth has come full circle on this. He was someone who actively campaigned in one direction and now he is advocating in an entirely different way. He explained the rationale for that, which was from sitting on the committee and hearing the testimony, but could he summarise, in the space of a minute or two, what he heard that had such a profound effect on him and changed his mind? That is what we on this committee are most interested in; people who have changed their minds and where that came from, whether it was in one direction or another. It is really important that all of us in this committee approach this with as open a mind as possible.

End of Life Ireland raised the issue of dementia. Before I sat on this committee, I had thought that would have been a condition that we would be spending quite a great deal of time talking about. However, we have not done do. That is because the subject has proven to be extremely complicated to broach. Instead, for the most part, we have spoken about regimes that deal with people who have six months or less to live and who have the autonomy to make their own decisions. We are therefore looking at time-limited, rather than life-limited, conditions, and people who have autonomy.

Mr. McKenna spoke a little about the power of attorney legislation. We have done a huge amount on this. I am a member of the Joint Committee on Disability Matters, so I am very familiar with the issues of power of attorney and assisted decision-making capacity. Do the representatives think our legislation around this is fit for purpose in the context of this whole new debate of assisted dying?

Dr. Stephen Duckworth

I will pick up on the first point around the reason for my change of mind. This was based on the evidence sessions. We sat 12 times over 12 months and heard evidence for approximately four hours from a face-to-face perspective. We had more than 12,000 written responses. We visited jurisdictions around the world where assisted dying is legal. The evidence I heard from dying people was so harrowing that it caused me to realise that a terminally ill person who is requesting an assisting death is actually not choosing between living and dying; they are choosing between two different ways of dying. These are either potentially through enduring avoidable suffering, or through a peaceful death where they are surrounded by their family and friends who are celebrating their life.

Deputy Emer Higgins

Dr. Duckworth did the undoable by summarising 12 months of work in about 180 seconds. That is a really powerful way of putting it; to choose between different ways of dying. I thank him.

Mr. Justin McKenna

I was listening to the radio at the weekend. I do not know if the Deputy tunes into Newstalk, but there was a lady with a lovely name of Manoush Zomorodi. She does TED Talks. On this occasion, she spoke about lifespan, how modern science has enabled people to live longer and the reasons for that, going back to pasteurisation, chlorination, penicillin and all the rest of it, to keep us going.

In the context of dementia, as far as the existing 1996 rules would apply for enduring powers of attorney, the one big change now is Part 8 of the 2015 Act. Part 8 brings about the ability to write an advanced healthcare directive. In the context of dementia, I see the circumstances of the patient being relevant. The quality of the life of the person will have diminished to a point that is clinically intolerable within the grounds of that person's determination and where there is no prospect of that quality improving by natural means. The point about the programme I was listening to is about the idea of lifespan and health span. These are not the same. You can live with dementia for a very long time. We in this room will all know people who are in that condition and who could sustain a life, or perhaps an existence. However, is it healthy? Is it healthy in the way they would like it to be? In a previous time, when they had capacity and when they were able to determine what they regarded as quality, they should be allowed to maintain it and decide when it should end, if that quality no longer exists.

Deputy Emer Higgins

When the father of a constituent and friend of mine had dementia, had been more than a decade in care and did not know or recognise other people, he was still living a very wholesome life. Yet, when it came to the end of his life and when he had been in prolonged and unsufferable pain for a month, my friend said to me that she hopes we do legislate for this. It was only after the fact that I had thought he would not have had the autonomy in that situation and in that applying that lens to it.

I can see the clock ticking down, so I will not ask another question. I will say to Ms Lazar that I know she has been here sitting through every session. I thank her so much for her participation today and for her presence right throughout.

An Cathaoirleach

I thank the Deputy for that observation because we all appreciate it. I call Senator Mullen.

Senator Rónán Mullen

I am very taken with our journey into a discussion of dementia which, as my friend and colleague, Deputy Higgins, said, we have not veered into that much in these weeks. Perhaps I am not fully ready to speak about it myself, but I would offer this much with certainty. I lived with and helped to care for my own father at home for approximately ten years during the time in which he suffered from Alzheimer's. I can say that we did not let him miss out on anything he needed in order to deal with any pain, including sedation. I can also say that while he would have hated the way in which he became extremely dependent on us for the most basic necessities of life - you know what I am talking about - that enabled a climate of love and care in our family that I never could have imagined being possible. Regardless of what letter anybody might have written in the past about how they would like to be dealt with in the future if they should lose capacity, there is more to the story. There is the story of how the relationship with that person can continue. We need to talk a great deal about dementia before we introduce it as just a matter of an extension of autonomy. Into the future, when one cannot themselves declare their wishes, there is an awful lot more at stake.

I will address a question to Ms Lazar on that point. What I hear very often - and I know Ms Lazar is very sincere about her views - is an emphasis on autonomy and choice. From Dr. Duckworth as well, it is fair to say, this arises more than the question of pain and suffering itself. We have heard and will hear a lot about how, particularly in the context of excellent as opposed to passable palliative care, so much can be done to address the kind of depression and fear of which Dr. Doherty has spoken.

Would Ms Lazar consider that there is also a social dimension to autonomy? If we legislate purely to vindicate people's autonomy, is there not a risk that other people's autonomy might be affected down the line? I refer to the people for whom it may be difficult to assess whether they truly have capacity and who may feel a burden. It is the type of social change in attitude that people like Professor Theo Boer have talked about; the idea and the fear that an ableist society ends up getting its most vulnerable people to move on and, indeed, to want to move on. Is there not that risk when we talk about autonomy?

Ms Janie Lazar

It is hard to actually pick out what the Senator is asking me.

Senator Rónán Mullen

I suppose what I am saying is that the full vindication of autonomy for one person may actually affect other people's autonomy down the line.

Ms Janie Lazar

It may well do. What I would say is that not every situation is the same. The decisions we make in our everyday lives have an impact on other people.

Mr. Justin McKenna

I would like to come in if I may. I am sympathetic to what the Senator said about his father. I lost my wife to motor neurone disease. I remember that towards the end of the two years when she was in care and the family were around, even despite the fact that it coincided with Covid-19, as a family we were extremely united. We were close to Clare and we were close to each other, and every step along the way and every day that was in it, we did not lose an ounce of love. In the overall, it was a strong sense. I felt for a while, because I was with her day in, day out, seven days a week and 24 hours every day, that I was as close to her as I ever was in 40 years of marriage. At the same time, however, while I was selfish in the love I felt because of that experience, I could not allow her pain, because I felt it as well, and that at the end, she had to make that decision. When we went to the hospice, she wrote on her tab, because she could not speak, that she wanted to be taken out in a box. The palliative people in the hospice understood this. She left six days later in a box. If I was to go with the Senator's point of view of autonomy - the autonomy that she would lose in making that wish and that I was not there to honour it - then I have lost something in doing it. I only regret that I did not say goodbye to her and she did not say goodbye to me, but that is palliative sedation.

Senator Rónán Mullen

My point is really then that my father's condition released things into his life and our lives that nobody could have foreseen, not even himself, and I would call it living. I want to ask Dr. Doherty about this. My concern and that of many people is that if we talk about autonomy and choice purely and simply in this area, it is possible that we send out, or that euthanasia or assisted suicide sends out, a message to society that certain lives are less worthy of protection than others. This can end up causing some people to consider their situation, particularly people who maybe do not have access to enough quality healthcare or, indeed, enough quality family and loving relationships, and can lead to an undermining of their self-worth. That is connected in my mind with what Dr. Doherty is saying, and I notice she is being very cautious about what she is saying, about suicide here. Is it her concern that legislating for euthanasia or assisted suicide could undermine society's ability to prevent suicide generally? Is it her concern that mental health, as we are seeing now in Canada, will lead to a follow-on claim on equality grounds that if my mental health pain is excruciating, and somebody who is terminally ill has a right to ask for his or her life to be ended, why should I not too? Does Dr. Doherty worry about that domino effect or am I misunderstanding her concern?

Dr. Anne Doherty

I thank the Senator for that question. I would be very concerned about the fact that if we are legislating on the basis of autonomy for one group of people who are entitled to a particular service and then we are saying that the suffering for somebody with a mental illness is just as great - and it is; people with mental illness have some of the most horrific sufferings - it is very difficult to avoid saying what the courts said in Canada, which was that people with mental illness were being discriminated against by not being allowed access to that service. There is a very strong risk that could happen in the future as well.

An Cathaoirleach

I thank the Senator very much. I call Deputy Lahart.

Deputy John Lahart

I thank the witnesses. One of the problems in the committee is that when new witnesses some in, and I speak for myself, I find myself oscillating, which I think is reasonable, forwards and back - I will not say between fixed positions - but it is interesting. That is why this committee was established. It is to tease some of these issues out. Therefore, if I come with a perspective that is counter to something that has been said, it is from a respectful and curious stance.

For me, it has been important that we have avoided naming specific neurological conditions because from the start, certainly, I have felt that this is connected to opinion polls. Some of the witnesses cited opinion polls. Politicians will tell you all you need to know about opinion polls and how nebulous and meaningless they are, to some degree, and how important they are. We live off them as well. That is another point. When people are asked a question about whether they think there should be assisted dying and 76% say "Yes", if they had the ability to listen to everything that has been going on here for the last few months, I think we would get different perspectives. We might get higher or lower. However, we are now into the minutiae of asking "When?", "For whom?", "Under what circumstances?", "Who would administer?", "What would the consequences be?", "What would the restrictions be?" and all of that.

One of the things I was very strong on was not mentioning neurological conditions because, typically, when people are asked about assisted dying, they have specific conditions in mind. I have always made the point, and I reiterate it here again, that there are people with the neurological conditions that have been mentioned today who live very full lives and who are absolute exemplars of human living to people. That is why I have always avoided associating assisted dying with specific neurological conditions. People continue to live full lives with neurological conditions. That is not to dismiss neurological conditions as a basis for the conversation we are having. It is that we grow; I am 58 years old. I underwent pretty serious surgery almost a year ago. I can say at 58 that it is the first time in my life that I understand. I cannot claim to understand or have grasped the whole thing, but I grasp more than I ever did in my life that I have one life. It has taken me 58 years to figure that out. There is one chance at this and you really want to exhaust every last drop and really squeeze the pips out of it. Would I feel the same if I had a severe condition that was really life-restricting? I do not know, but I know I see life in a different kind of way as a result of my health having been challenged.

I have a couple of questions. One of the things I am interested in is our basis and understanding of what life is all about, whether that was influenced by the Greek and Roman philosophers or the age of enlightenment. Now, it has all kind of averted to the scientific advances in the 20th century with regard to medicine that have helped to prolong life. However, it also impacts diseases and illnesses as a result of life being prolonged, and maybe we are experiencing things that simply were not experienced, certainly at the time when people were outlining a philosophy of the meaning of life. That is an interesting thing to look at. Life has changed fundamentally. Certainly, western life has changed fundamentally. I would like the witnesses' reaction to that in terms of medical developments but also around how other conditions come with long life.

Ms Lazar said there is now a moral imperative to consider legislating for assisted dying. Will she explain what the moral imperative is? Dr. Dalton said that capacity can be impeded. Will she give a few examples of how a person's capacity can be impeded?

Dr. Caroline Dalton

When there is an issue with someone's capacity to understand information or to make a decision, issues can be intrinsic or extrinsic to the individual. For example, a person may need specific supports in the way information is communicated to them. If they are given access to information in a way they can understand, such as through easy-read material, additional time or additional consultations in which to discuss an issue, they are no longer impeded. It comes down to access to resources for that individual and ensuring that if they need supports to be able to understand something - all of us do - they have access to them. Access enhances, fosters and promotes our capacity, but without it we are at a disadvantage and our capacity is not enhanced and fostered in a way it can be. We all learn through life. We have the ability to learn, enhance and develop our understanding of things and that understanding comes from being given supports and being engaged with in a way that allows us to enhance our decision-making practices.

The main focus where I work is looking at how we can provide information and supports to enable people to make decisions, whatever they are and in whatever context, rather than us looking at a person and asking whether, at this moment, the person has the capacity to make the decision with a "Yes" or "No" answer, without doing anything further to support the individual to make a decision. It takes time and access to resources appropriate to the individual. I hope I have answered the Deputy's question about things that impede capacity. There is a variety of things and many supports can help.

Ms Janie Lazar

The Deputy asked about a moral imperative. I will bring the discussion back one stage. Like the Deputy, I have had health misadventures. When individuals are faced with their own mortality and what it means, they start to look at things differently. As I said, I talk to many people who are dying and have been in situations where they are looking at their entire situation in their families, their circle of friends - as Senator Mullen said, the wider implications. How I die matters to me and my circle of support. The Senator is fortunate to have a family and a wider circle that can provide support. People look at what they are dealing with, whether it is a specific condition or a series of treatments. Until people are in that situation, they cannot possibly know what someone else would prefer to do. In that situation, I may well change my mind because, my life at that time becomes more tolerable because of support, but there are certain places I do not want to go. I think the decisions I make will be respected by those I love.

Deputy Pa Daly

Professor Doherty said that older women have higher rates of depression. Is that compared to men or younger women? In general, are older women at the top of the scale? That is what she is saying, okay.

She also said that there is an increase in older women seeking assisted dying. She mentioned a number of places including Oregon and Switzerland. It also tallies with something said by someone from the Netherlands. Ms Lazar said that palliative care, disability services and support for the elderly and lonely are separate issues. Does Dr. Doherty think they are separate issues? It was said that a lot of work needs to be done, proper mental health supports are needed and there is a deficit in social care provision. I was in a house in Kerry last night where the people are trying to access psychiatric care. There are long waiting lists. It was not for older people. With the deficits in social care provision, is it right to press ahead without the increased supports or are they separate issues?

Dr. Anne Doherty

I do not see them as separate issues. As part of my everyday job, I assess people who want to die. For some it may be due to mental illness. In an emergency department, people who are self-harming come in. For some of them it will be due to mental illness, but it is quite a small percentage. For many people it is the wider network and things that are going on in their lives. It can be related to addictions or what we call-----

Deputy Pa Daly

Professor Doherty is talking about suicidal ideation

Dr. Anne Doherty

I am talking about people who do not have life-limiting conditions in the first instance.

Deputy Pa Daly

Okay.

Dr. Anne Doherty

If we take it outside that issue, all these things are interrelated. Many people have psychosocial issues that impact on how they see the world and how they feel at a given time, and influence how they feel about the future. It is not easy to separate it in the general population. It becomes even more complicated if we look at people who have a physical health condition on top of that because there are additional stresses built into having a condition. The rates of things like depression and anxiety go up in those populations. That is why we have the national clinical programme for psycho-oncology. It is an acknowledgement that people who have a range of cancers, for example - cancer is only one part of the bigger picture - are at higher risk of having depression and anxiety. We get referrals all the time after people say to their oncologists: "I want to die. Can you send me to Dignitas?". The oncologists cannot do so but they can say they are worried about the patients' mood and ask them if they would like to see the mental health team. We assess people on that basis and we have had quite a few referrals like that over the years. In most cases I have seen, the people have been depressed and have responded well to treatment. There is a treatable piece.

These are complex interrelated problems and it is hard to separate them. Cancer now has the national clinical programme for psycho-oncology which is wonderful, but many other conditions also need integrated mental and physical healthcare. For example, let us look at the area of neurological conditions as it was brought up. There are no dedicated mental health services for people with neuro-psychiatric conditions; that is, people who develop neurological problems and have comorbid mental health problems.

None of the hospices have integrated mental health care either. There are many gaps that we need to close. Speaking from a clinical background, I am worried that, if we do not close them, there may be people choosing assisted dying in a semblance of voluntariness, if that is a word, and autonomy when the reality is that they may have conditions that are not being treated. The Deputy spoke about going to the home of someone who had been unable to access mainstream mental health services. We see that all of the time. There are significant delays and gaps in services. “Mental illness” can mean different things to different people, but even at the more mild-to-moderate end of it, for example, depressive illness, most people who are mild to moderately depressive will never see a psychiatrist. They will be managed very well through primary care. However, we need to ensure that such conditions are being picked up and that people are getting the specialist care they need and not necessarily being shunted down a path from which there is no return.

Deputy Pa Daly

I saw Dr. Dalton nodding her head. Does she wish to comment on this point?

Dr. Caroline Dalton

Yes. It is an important point. When discussing people making decisions, they need to have a range of choices available to them and those choices need to be linked to services that are fit for purpose and meet their needs in the way, time and place they require. Accessing a range of appropriate services to address whatever issues or conditions someone has is fundamentally important. If people do not have access to those services, how can they make a choice? As others have said, we do not want people to be left in a situation where they are pushed towards making a specific decision in the absence of other choices and supports of which they may not be aware. This is an important consideration if we are to talk about true autonomy. If someone is going to make a decision, it should be an informed one based on access to the supports he or she requires.

Deputy Pa Daly

Do the witnesses believe that the 6% that mental health services are getting in the budget compared with the 12% or 13% they get in other countries should be increased significantly before we legislate on this matter?

Dr. Caroline Dalton

The issues surrounding the availability of services are well known. They will have to be addressed irrespective of what we are discussing today. We need to be working towards ensuring that people have access to the supports they require. The issues in disability and mental health services are well known. They must be addressed in a range of contexts, including the financial context.

Senator Mary Seery Kearney

I thank the witnesses. We are coming to the nub of the issue of whether someone truly chooses assisted dying and has the ability and supports to reach that point.

I will focus on two areas. First, I valued the discussion on depression, the implications of depression, the experience of people with depression of their own emotions and their perceptions while they have it. I appreciate that Dr. Doherty is drawing a respectful limit on the inferences that can be drawn from the correlation between the number of older women suffering from depression and the number of older women choosing assisted dying. As such, we must consider depression seriously and, following on from Dr. Dalton’s comments, ensure that we have supports in place.

While I support that fully, there is a danger within it. If someone is expressing a wish for assisted dying, does an implication arise that we should have a safeguard that checks his or her mental health? While I can see value in that, I am wary of other fields where we overly medicalise people making a legitimate choice for their own lives. How do we not do that? I am sorry, as I am a little inarticulate. I am trying to get to what I am feeling and thinking about this. Is there a danger that, if we look at depression as being too big an influence, we will force people through procedures or treatments for depression or make them prove themselves free of depression before they can legitimately make that choice? I agree that we need to have all supports in place so that the choice is freely made, but would there be an implication to that?

Second, I wish to ask about quality of life. I find that a disturbing determinant, to be perfectly honest. Quality is a subjective experience rather than an objective one we need to be careful. On the one hand, we need to provide the choice of assisted dying so that, when the subjective experience is intolerable, there is a choice for those individuals. On the other hand, our committee is charged with responsibility for not determining what “quality of life” is or setting thresholds. If we are not doing that, then at what point does an individual get the opportunity to make the choice or is presented with information on assisted dying and how does that happen?

These are my thoughts arising out of the witnesses’ opening statements.

Dr. Anne Doherty

The Senator’s question on depression was good. It almost raises another question, in that, if one was to introduce some form of legislation in this regard, should everyone have a mental health assessment? In practice, that would not be workable. For a start, the system would not have the resources to do it. However, the issue should be borne in mind because it impacts how people think and how they perceive the world and the future. The original descriptions of depression in what is called Beck’s triad set out a sense of hopelessness about yourself, the future and the world. As such, this is about being able to tease out the difference between a depressive illness, someone making a choice of his or her own volition, and where one ends and the other begins. Even where people have assessments, it can sometimes be difficult to tease that out. How much is a normal response to someone’s situation and how much may be a treatable condition? This is something that we grapple with every day. Often, we step back and try to see how people manage and respond to changes in other elements around them. However, this matter is a concern and we need to ensure that people have access to the appropriate levels of mental healthcare.

Dr. Stephen Duckworth

People who are terminally ill with cancer are twice as likely to commit suicide. That is the current status quo. Introducing a change in legislation requiring the consenting physician and the independent physician to refer an individual for psychiatric support if they suspect there is a psychiatric relationship to the individual’s condition as a secondary problem for treatment would be enabling a better situation to exist with the advent of assisted dying legislation than currently exists for people without assisted dying legislation who are committing suicide as a result of terminal cancer.

Senator Mary Seery Kearney

What about quality of life?

How do the witnesses recommend us to look at that? Senator Mullen discussed the experience of his father. There is the experience of the End of Life Ireland representative, who discussed his wife. They are very different perceptions of quality of life. That is where it is a subjective experience. How do we legislate for subjectivity?

Dr. Stephen Duckworth

I do not think that one can. I have a fantastic quality of life. I have numerous jobs, I have four children, I have a beautiful wife and a love life. That is my autonomous position on my current state of being. However, should that dip below a certain threshold for me, although I love what I do and I do what I love, I would not love dying in intolerable pain. At that point, I would like to have access to that service. In terms of autonomy, it is up to each individual to die but I would only accept it on the basis of the grounds of someone having a terminal illness diagnosis of six months or less, which is commonly used in practice in the UK to evaluate people's entitlement to certain disability benefits.

Senator Mary Seery Kearney

Excellent. I thank Dr. Duckworth.

An Cathaoirleach

I thank the Senator and call Senator O'Loughlin.

Senator Fiona O'Loughlin

I thank all who have given testimony this morning. Unfortunately, I had another committee meeting so I did not get to hear all the opening statements. However, I did have the opportunity to read them. When I came in, Ms Lazar was speaking about personal choice. I have a good friend, whom I met recently, and we discussed this. He is somebody who was very much against the repeal of the eighth amendment. While liberal in many other ways, he campaigned strongly because he felt that somebody else was making a choice for the embryo. However, his father only died relatively recently. He said having seen him suffer and what we went through, he felt that he would absolutely want to be able to make that personal choice if it was available and if it was not available in this country, he would possibly go somewhere else. The essence of it was that he still totally supported his view on repeal, which is that nobody has the right to take the life of a potential baby. At the same time, he said that if a person was in difficult circumstances, and under certain criteria, they should have the right to make that choice. He made that quite clear to me. He felt that I thought, because of his stance on repeal, that he would be against assisted dying.

I have a few questions. I found Dr. Duckworth's statement to be really inspirational. The work he does and the life he lives in such a positive way are quite incredible. There is also the fact that he changed his mind in such a strong way relative to his previous views. It is always important to discuss how somebody may change. This was based on the evidence he heard over a period of 12 months, looking at research and going to specific locations in four countries that offer assisted dying. He mentioned in his statement Mavis, Dennis, Frankie and Charlie and the differences in their situations. It is interesting to hear that coming from somebody who has had a severe disability in life, but who has managed to make life work in such an incredible and giving way, in terms of the work he does. I very much take on board what he is saying.

I appreciate Dr. Doherty is coming from a position where she is dealing with people with mental health issues and she has concerns about the autonomy regarding making decisions in relation to that. Outside of somebody with mental health issues making that decision - and I absolutely understand and share her concerns - are other situations where she thinks assisted dying could be in effect, for example, where somebody has a terminal illness and will die in six months, which we have discussed? Should there be the possibility of them availing of assisted dying to ensure they do not have continued horrific pain and, as Ms Lazar said, they can pass away surrounded by people they love? This would not be of their choosing because nobody wants to be in a situation where they would possibly pass away from a terminal illness. This is more a matter of being able to control the manner in which and how they die. If the witnesses could respond, I would appreciate it.

Dr. Stephen Duckworth

In terms of changing minds, there are other organisations and people who have changed minds. In 2015, Disability Rights UK, which is a national representative of disabled people's organisations, held the position of opposing assisted dying but it is now neutral. The British Medical Association, BMA, adopted a similar approach more recently as, indeed, have other medical bodies. Lord Carey, the former Archbishop of Canterbury, stated recently that the moral case for change in the law is irrefutable, both from a Christian and moral perspective. Dr. Taj Hargey, a Muslim academic and imam, supports the position. Bishop Desmond Tutu supports the position so from a religious perspective and a disability rights perspective, support is changing.

Could the Senator repeat the second part of her question?

Senator Fiona O'Loughlin

The second part of the question is for Dr. Doherty. I acknowledge that she is mainly advocating for people who have mental health issues but I would like her view on other situations.

Dr. Anne Doherty

I thank the Senator. It is really complicated. I think everybody would want people to have the best possible quality of life as they approach their end. Nobody wants anybody to suffer in any way, whether that is physical, psychological or otherwise.

I do have a little bit of concern about how that would happen in practice. If we could limit it to just people with a terminal illness and if it were to have no impact on anybody else, that would be one thing. I do not know if the Senator has had a chance to look at the deliberations by the Danish ethics commission. They looked at it from the perspective of full autonomy. Everybody has access to this and nobody has access that but, in the middle, there is a whole range of a continuum. They were worried about how to keep it to one part of that continuum without it being challenged. If we say it is for terminal illness, people will then ask about having it for somebody with dementia. If it could be localised to that group of people, that would be one thing but my real concern is that it may not be possible to localise it to that. What, then, would be the impact on people with mental illness or other parts of society that might be disadvantaged by it?

An Cathaoirleach

We will go into a shorter four-minute round now. I call Deputy Gino Kenny.

Deputy Gino Kenny

I thank everybody. It has been a very good discussion so far. Dr. Doherty's statement is a good one, but there are obviously certain parts of it I disagree with in relation to treating people she sees who have been diagnosed with serious illnesses.

I understand that there is a huge amount of fear in relation to one's morality and one's own life. It is a very fundamental question that each of us will probably have to ask ourselves in regard to our own lives. There is an acceptance sometimes that our life may be cut short following a diagnosis. That is very difficult to quantify or understand for everybody – the person, the family, and so forth. There is a compelling argument in regard to those who are coming to the end of their life that they should have a choice. This gets to the fundamental point of why we are discussing this and a person's choice or say in how he or she wants to die. When a person is in that situation, he or she is tested to the limit in terms of his or her capacity and his or her own life. Surely, in a situation when somebody is coming to the end of their life, they should have a say in how their life ends. I am convinced that assisted dying should be legislated for in that situation. It is limited to a certain degree. As legislators, if we recommend assisted dying, regardless of the criteria, then it is up to us to decide if it stays as it is or whether to review any legislation. That can be applied to many legislative measures. I am sure Dr. Doherty has dealt with many scenarios where a person probably will not die in the immediate future but he or she wants to die because of the fear of what lies ahead. I understand that. It is a perfectly legitimate human emotion. But surely in situations where a person has come to the end of their life, they should have the choice of availing of assisted dying.

Dr. Anne Doherty

The Deputy raises a very important point, which is the primacy of autonomy in the debate. As I am not by any means an ethicist, I am very reluctant to wade into the moral arguments around this. I prefer to stick to the facts and the vulnerability of certain populations because that is where my knowledge is. For example, in Oregon, people would be covered by the law for the six-month cut-off Deputy Kenny has described for people with terminal illness and people who are very clearly going into that stage of their lives. It has not changed all that much in 20 years. The situation has been quite stable. The worry I have is that it is the population where we saw the increased rates of suicide in older women and in terms of assisted dying in that population as well. While in principle-----

Deputy Gino Kenny

Is that when they have been given that prognosis?

Dr. Anne Doherty

Yes.

Deputy Gino Kenny

Dr. Doherty will understand why, because they are hard scenarios, as we all know, where somebody does take their own life because they know what they are facing. I have first-hand experience with this. Regardless of what kind of modern medicine we have, they know they face an extremely difficult number of months. No human being should have to go through that. That is why I think scenarios should be considered.

An Cathaoirleach

I call Senator Mullen.

Senator Rónán Mullen

I might pick up on that point.

Deputy Gino Kenny

Could Dr. Doherty perhaps answer that question briefly if she wants?

An Cathaoirleach

Yes, briefly. That is no problem.

Dr. Anne Doherty

I think that is the real nub of all of this. It is around autonomy. Again, I do not claim to be an expert in ethics but if we could confine it to that group I think there would be very few people who would be against it. The reality though is it is about the impact that it has on the other people who may very well need treatment but who are not able to access it at the moment. They are the people I am worried about. In principle, for a group of competent people, I do not think anybody is going to go to war over that; it is really more about the impact that it has on the rest of society.

Deputy Gino Kenny

How would that be the case? I am not putting Dr. Doherty on the spot by any means but how would that have a knock-on effect on somebody who has a very depressive illness and who could never avail of assisted dying? I do not see how that would have a knock-on effect on other groups that could never avail of assisted dying because of the legislative safeguards that would be put in place.

Dr. Anne Doherty

I hear what Deputy Kenny is saying. I suppose I have met quite a number of people, for example, who would be in that category described by Deputy Kenny who have been told that they have a very short length of time to live, and in that context they may have suicidal thoughts. I have seen some who have acted on them as well. When we treat any depression people have, they can then change how they feel about it and have some enjoyment in the remainder of the life that they have. It is really about making sure that we do not negate the benefit that that group of people can have.

An Cathaoirleach

I thank Dr. Doherty. I call Senator Mullen.

Senator Rónán Mullen

I think at some point, as a committee, we probably need to think more about what is available in terms of the management of pain and discomfort and sedation. I know that does not address the demand for autonomy but it deals with pain perhaps in a way that hedges against the risk of there being unidentified victims of a change in the law, which I think is what we are talking about here, or trying to do so.

On the subject of depression raised by Dr. Doherty, does she think that if, for example, assisted suicide was there and let us even say there was a protocol whereby there was a check for depression – she says it might be difficult to do that – forgive me for using the phrase but could it be like Schrodinger's cat, in that the existence of an option to have one's life ended changes one's perception such that even the desire to go for treatment for depression might be compromised? Is that something we need to consider in terms of unintended consequences of a change in the law?

I would also like to ask another question if there is time. It was claimed by the Dignitas representative some weeks ago that if you change the law, you are at least preventing people from committing suicide in very violent ways. That is characterising what was said very bluntly. Dr. Doherty's study on the relationship between suicide and assisted suicide regimes seems to suggest, however, that it actually does not decrease suicide at all. Did that surprise her? If one takes it as a sometimes unstated assumption that at least it would mean that some people who might otherwise have recourse to suicide will now use assisted suicide, but that does not seem to be happening. Does that mean that more people are committing suicide as a result of some kind of new social messaging or does it mean something else?

Dr. Anne Doherty

The answer to the Senator is I do not know. That study was done on a population based status so it is very difficult to drill down and figure out exactly what was going on for the individual. However, I was initially surprised. I am moving to a slightly different area, but if we think about all of the literature around suicide contagion, we have very clear rules around how the media reports suicide because people can be very vulnerable to hearing something and it influencing how they might behave themselves or how they might see things themselves. That is a very real phenomenon that does exist and it has been documented in the literature. I would have been worried that that might have been the case in situations where assisted dying is legalised, in particular in countries where it is called "assisted suicide" and there is that name association with it. I would have thought from my understanding of suicide and self-harm that there could be a contagion effect so I was surprised to hear people say that it might reduce suicide because for me that felt quite counterintuitive. When we went through the literature we basically found that it did not decrease the amount of suicide. In many countries it was stable. In many, the suicide levels overall actually went up. A lot of the studies were quite robust, so they did not just look at rates in isolation, they controlled for societal factors that might impact suicidality. The Dutch study, for example, controlled for unemployment, religiosity and divorce because they felt that they were factors that might influence how people might proceed towards suicide anyway. They were quite complex analyses and they did show overall trends upwards but when you control for the other societal factors that influence suicide, certainly in the Netherlands, it was a flat result with no increase or no decrease.

Senator Rónán Mullen

The no decrease would require some analysis because the claim is made that when you introduce assisted suicide, you take some people out of the violent suicide cohort and you put them into the controlled situation.

There is clearly more going on that we have to think about.

Dr. Anne Doherty

One of the studies was in Switzerland and showed quite a quite a significant decrease in suicides overall. The authors, who are Swiss, felt that this was associated with the introduction of far greater limitations around firearms in that period of time and a decrease in access to firearms. Unfortunately, all of these things are really complicated. It is really hard to tease out what relates to the law and what does not. I suppose we can look at the overall trends.

Senator Rónán Mullen

Is there time to ask Dr. Dalton a quick question?

An Cathaoirleach

It will have to be very quick.

Senator Rónán Mullen

Dr. Dalton has made a number of instructive comments as to the need to look not only at capacity in a blunt way, but also at the surrounding social circumstances that might enable or inhibit capacity. One of those is the very inadequate healthcare environment we have in this country, particularly with regard to mental health, which, to be frank, looks set to continue for no short time. Dr. Dalton has been careful not to express a view one way or the other on the question of changing the law but, while that situation persists, does it pose an increased danger to society's attempt to enable people to reach capacity, particularly with regard to so radical and final a decision as this?

Dr. Caroline Dalton

I just want to be clear on the Senator's question. Does it relate to the services or-----

Senator Rónán Mullen

If we are honest about it, we will continue to have inadequate services, particularly with regard to mental health but also the other things Dr. Dalton has described as being part of a person being able to have capacity in some truly objective way. We are now talking about a very radical and final decision, the decision to end one's life, and this is predicated on the idea that a person can reach some kind of state of independence. However, I believe what everyone is saying is that you do not have that independence in the absence of proper societal facilities to enable you. If you are poor and do not have sufficient access to healthcare or if you do not have a strong family network, you are a vulnerable person. Is there then a greater risk associated with an attempt to legislate for assisted suicide given how fundamental and final that decision is? In other words, do you not need a much stronger healthcare network to be sure you are able to help people have the capacity to make such a decision?

Dr. Caroline Dalton

I am not sure it would necessarily help people to have the capacity but, if you are looking at allowing people to make decisions, they have to have a range of choices available to them. You certainly do not want to be bringing about a change in legislation that would increase the inequalities people already face because of an absence of services. Supporting people to make decisions is based on their ability to access support services. That must be considered when looking at any changes in legislation to ensure that any change does not exacerbate existing inequalities. We should fundamentally be moving to address those inequalities and to ensure people have access to those services because it impacts their overall ability to make choices.

Senator Rónán Mullen

Perhaps I should have distinguished more clearly between capacity and autonomy. To some degree, I am suggesting that what goes for capacity also goes for autonomy as regards the availability of services to truly support real independence.

Dr. Caroline Dalton

If you are looking to support or underpin people's autonomy, that has to be linked to the choices they can make based on what is available to them.

Senator Mary Seery Kearney

I will follow on from that. Is there any danger that, if we start considering autonomy in terms of the range of choices people can make, we would end up with discrimination based on socioeconomic circumstances? How do we make sure that does not arise if we are assessing autonomy?

Mr. Justin McKenna

There is something I wish to address as time is now beginning to run out. Directly on the Senator's point, there are conundrums in doing so. If the idea of assisted dying is accepted in principle and it is then a matter of putting in place the proper safeguards to ensure it operates in a manner that can be managed and controlled, subsequent to implementation, there should be an implementation group established comprising patients, doctors, the HSE and the Department of Health. It might also include the Decision Support Service, Sage Advocacy and possibly the Law Society. The group would engage in a level of review and consultation, taking into account all of the points we have been making today in respect of autonomy and the assessment of decision-making capacity. Allied to that would be a service provider group that would look at the operation of the legislation. Within this service provider group, there would be the general practitioners, the advanced nurse practitioners, community pharmacists and palliative consultants and this group would be involved in a similar review process. In other words, the existing shortcomings in our health structures with regard to psychiatric care and mental health services would all be addressed in the same context. One would join up with the other. It is a matter of connecting the dots. Because we have now begun something, a debate which I hope will lead to legislation, it will not end there. We will continue to discuss this in the years ahead and it will improve as society says it should.

Dr. Stephen Duckworth

I would like to talk briefly about mental health, psychiatric illness and assisted dying in reference to a study reported in the Journal of Medical Ethics regarding the Oregon legislation. This study showed:

no evidence of heightened risk for elderly people, women, people with low educational status or poor people, disabled people and chronically ill people, people with psychiatric illnesses, or ethnic minorities. Most people who seek out and Assisted Death are aged 65-84, white, well educated, have medical insurance and have cancer

Senator Mary Seery Kearney

There you have it. Most people who access it are white and well educated. There then appears to be inverted discrimination in access. I would like to read that article. I would value a link or reference being sent to us.

Dr. Stephen Duckworth

I will send a copy to the secretariat along with the other documents I have been asked for.

Senator Mary Seery Kearney

I thank Dr. Duckworth very much. I really appreciate that.

An Cathaoirleach

I thank Dr. Dalton, Dr. Duckworth, Dr. Doherty, Ms Lazar and Mr. McKenna for coming to our meeting today and engaging with the committee. This committee can only be as good as the witnesses who come before it, the questions, the answers, the debates and the deliberations we are all going to make. We hope that it will help us all in coming to the right decisions at the end of the day. I thank the witnesses, both those online and those present, for their time.

The joint committee adjourned at 12.49 p.m. until 10.30 a.m. on Tuesday, 14 November 2023.