Joint Committee on Assisted Dying debate -
Tuesday, 12 Dec 2023

Examination of Potential Consequences - Protecting and Enhancing the Provision of Palliative Care: Discussion

An Cathaoirleach

Apologies have been received from Senators O'Loughlin and Hoey.

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This committee discusses dying, including suicide. Support information can be found on the committee's web page.

The business today is an engagement on the topic of potential consequences: protecting and enhancing the provision of palliative care. I warmly welcome Dr. Regina McQuillan and Dr. Faith Cranfield, palliative medicine consultants and members of the Irish Palliative Medicine Consultants Association, IPMCA; Dr. Max Watson, programme director, Project ECHO, Hospice UK; and Dr. Matthew Doré, honorary secretary of the Association of Palliative Medicine for Great Britain and Ireland, APM. I thank the witnesses in advance for sharing their knowledge and expertise in their field. We appreciate their attendance as the work we have to do is important.

The format of the meeting is that all witnesses will give their opening statements and must adhere to the statement they provided. Members can then ask questions. A member can ask questions of an individual witness or address a question to all of the witnesses more generally. I ask witnesses to keep their opening statements to the agreed five minutes and there are clocks on the wall. Do not blame me for being tough about time because I must be. Otherwise, we would be here until 10 p.m.

I invite Dr. McQuillan to make her opening statement.

Dr. Regina McQuillan

I thank the Chair and the committee. We very much appreciate the opportunity to appear before the committee today and to provide evidence on behalf of the Irish Palliative Medicines Consultants Association. The issues we seek to address today are ones to which our group has devoted significant time and resources to discuss, understand and form a position on.

We respect all views on assisted suicide and euthanasia and we will continue to engage with all parties on this basis. Only through a respectful and open dialogue can we begin to reduce the stigma and fears about death, a process that we will all be affected by at some point in our lives. In this regard, we welcome this discussion about end of life. The IPMCA is the official representative association for consultants in palliative medicine in Ireland. The members of the association care for approximately 28,000 patients and their families annually as they face the challenges and losses that arise when the end of life approaches.

We work hard daily to provide compassionate, respectful and reassuring care seeking to ensure each person we meet has their needs addressed, guided by their individual values, wishes and concerns. We do this by listening to each person we meet and building trust with them and those important to them. Each person comes with a unique perspective on life and will place differing emphasis on what is important to them as they face death.

The IPMCA is fundamentally opposed to the introduction of assisted dying, assisted suicide, or euthanasia. Our members believe that any shift from the current legislative status quo would represent a regressive change to patient care in Ireland. Our position is informed by our extensive clinical and personal experiences as well as the international evidence that has emerged over time as other jurisdictions have adopted assisted dying legislation in recent decades.

To summarise our position, we oppose any change to the status quo for the following reasons: many commonly held perceptions about the end of life are different from the reality we see every day. Death is sad for patients and their families, but most physical and psychological suffering can be well-managed by comprehensive expert care. We believe it would significantly and negatively impact the trusted relationship that exists between doctors and their patients, particularly in the area of palliative care, as patients sometimes fear referral to palliative care because of our role in end of life care. Meaningful and long-lasting safeguards are impossible to construct. The logical premise of assisted dying is to respect autonomy and to reduce suffering. This has led to its extension of assisted dying to other people, including mature minors, and the inclusion of other causes of suffering as part of the inclusion criteria for assisted dying. While we respect the autonomy of the individual in every encounter, this should be equally balanced against, and protective of, the needs of the wider population - including the wider population of people who are living with a serious illness. Introducing assisted dying is a societal statement about the value of life that will impact on others, not just those who request it. The wish to die is common and usually transient. It is influenced by many factors including mainly psychosocial reasons, which can often be addressed with the right care

In line with the topic of today’s hearing, protecting and enhancing the provision of palliative care, it is also important to note that regardless of the outcome of this process, assisted dying should never be considered a substitute for the provision of good palliative care. The two should not be associated, nor should it be assumed that assisted dying best fits with palliative care. People fear death, and because palliative care is associated with life-limiting illnesses and end of life care, people sometimes fear referral to palliative care. This can be a barrier to people receiving care that is focused on helping people live as well as possible until they die. If we are also actively involved in providing assisted dying, developing and maintaining trust would be extremely difficult. It is not that palliative care services that would suffer in these sorts of situations but that the services are meaningless if not helping patients.

It is the patients who will suffer. Far more must be done to deliver equitable service provision throughout Ireland. The pioneering national palliative care policy of 2001 has lapsed, and the publication of a new one is awaited.

Finally, we fully acknowledge that these are complex, nuanced and highly emotive issues and understand that considering legislation in this area is very difficult. It is a great challenge and one we wish to play a significant role in informing. We look forward to addressing the committee's questions.

Professor Max Watson

I am grateful for the invitation to address the committee. I do not envy the committee its task. As guardians of potential legislative change, the committee faces a thankless task which involves sifting opinions from facts and blind convictions from evidence. The committee has to be mindful of opinion polls that claim to represent the will of the people of Ireland and the risk that legal change could permanently alter the fundamental nature of Irish healthcare. Whatever the committee does will not be universally appreciated.

I am here as a palliative care doctor and professor who has worked for more than 35 years in a variety of roles, including here in Dublin with the Irish Hospice Foundation and in Northern Ireland, London, Nepal and India, where I hold an academic appointment. Throughout my career, I have been focused on how to support people as they live the last part of their lives.

I begin by acknowledging that this goal of improving and supporting people in the last phase of life is a challenge for us all and a goal we share. Even defining a good death is not easy, and the different assessments of a death - "He fought right to the end", "He suffered horribly" or "It was such a peaceful passing" - betray the investments that different people bring to observing even the same death and society's death anxiety. The definitive studies from beyond the grave have not been done. Palliative care itself is often misunderstood. People think it is only about death and dying but it is actually about living well to the end. I work with Dame Cicely Saunders, and her famous affirmation has been our creed:

You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.

I have been involved in an estimated 8,000 deaths during my career in palliative care. I have engaged with a variety of politicians in different countries in the process of trying to improve end-of-life care but I have never felt that need here in Ireland. Today we are focused on protecting and improving palliative care. I am grateful that the committee understands the potential impact of legislative change on palliative care in Ireland. Other jurisdictions assume that palliative care and assisted dying go hand in glove. They do not.

Palliative care and care of the elderly services are the specialties consistently most opposed to such change. This could be because, at its core, palliative care is about neither hastening death or unnecessarily prolonging life. Doctors generally enjoy fixing things. Having to accept a world where not everything can be fixed and daily facing mortality with our patients is initially very counterintuitive. However, this is the reality we have embraced, since the patient, David Tasma, requested more from Cicely Saunders than traditional medical care. He said, “I only want what is in your heart and mind.” Palliative care is not just about giving drugs for pain or other symptoms. Our scalpel is building honest relationships and being with people as accompanists in the last phase of life. This work parallels that of a midwife. To anticipate systematised, regulated, rights-focused death protocols being forced into our operating theatre undermines the fundamental of what and who our patients have taught us and need us to be.

I worry that if assisted dying becomes the default option, legislation will severely limit patient choice. Currently, I can discuss a patient's fears and options when they ask me about ending their life. In the event of legislative change, I will not be able to do so for fear of being accused of applying the worst kind of medical paternalism, namely, inappropriate influence on the vulnerable.

I do not think the Spice Girls have been asked to speak to this committee, but their question is the most crucial one the committee must face - "Tell me what you want, what you really, really want" to achieve from changing or from not changing legislation on physician assisted dying. Is it to make it a right for Irish people to autonomously be able to seek help to end their lives at a time of their own choosing or Is it to improve the number of people who are enabled to live well until they die knowing that they will neither be abandoned nor have their suffering ignored? What is it that we as a society really, really want? I do not have faith that legislative change can bring about the latter because I have not seen the evidence that legalising physician assisted dying could improve the quality of dying in Ireland. There is evidence that greater palliative care integration could, really, really make a difference to our goal.

An Cathaoirleach

I thank Dr. Watson and I invite Dr. Doré to make his opening statement.

Dr. Matthew Doré

The Association of Palliative Medicine is the largest representative body of palliative care physicians in Great Britain and Ireland. Indeed, we are one of the largest in the world with a membership of more than 1,300. Thus, we represent those doctors who look after and treat the dying the most out of any medical professional. This is our day job.

This is worth noting because in consistent surveys and polls upwards of 82% of our membership are against this legislation being enacted. Indeed, in our 2022 poll in Scotland, 98% stated that assisted dying should not be part of mainstream healthcare. It is not just our membership, these numbers have been replicated in the 2020 British Medical Association, BMA, survey with 85% of palliative care physicians opposed to it. Our position statement is thus clear: we oppose legislation legalising assisted dying.

Why is palliative medicine against something that is touted as reducing suffering and providing choice? Both are fundamental to our specialty. Why is arguably the most accepting, forward thinking, progressive group of doctors against this legislation? This is surely a pause for thought on today’s topic of protecting palliative care.

Palliative care has an insight, that inevitably there will be "incorrect" deaths with this legislation. What we mean by incorrect deaths is that there will be people who have assisted dying who have, first, an incorrect diagnosis such as in Canada with the misdiagnosis of COPD that happened, or dare I mention the spate of MND misdiagnosis recently or, second, their prognosis is unpredictable. I believe the committee is aware of how poor we are at prognosticating. Third, a person's choice is fluctuating. People change their minds; indeed they naturally need time to adjust to their diagnosis. Fourth, there are those with mental health issues. Indeed only two people in Oregon and 6% in Canada were assessed by a psychiatrist this year. Suicide in Oregon has increased by a third and in no jurisdiction that has legalised assisted dying has its suicide rate gone down. Fifth, elder abuse is real. Some one in five of those aged over 65 have experienced abuse. A law is for everyone, and to ignore the risks of coercion and pressure is disingenuous. Sixth, within Oregon’s own statistics, 48% feel a burden and 6% have financial concerns. In Canada, there is clearly now pressure to consider assisted suicide.

An incorrect death is a death mismatched with the rationale for having an assisted death. It is a consequence of pre-empting the unknowable. As lawmakers, committee members will know laws balance individual liberty against societal safety. We have speed limits because driving over 30 km/h on O’Connell Street risks other people, the pedestrians. All traffic laws, all domestic laws, all criminal laws, - it is why we have prisons - are balancing individual choice versus society. Your individual liberty is limited to how it affects other people. My question to the committee is: what percentage of incorrect,

unnecessary deaths in the population due to the legalisation of assisted suicide would be acceptable? I suggest none.

The answer often touted is, "We will have safeguards" but are they really safeguards? Are they not an arbitrary criteria to find eligibility? In every jurisdiction that has legalised assisted dying for longer than ten years, there has been an extension to that eligibility. To correct a statement in a previous session, Oregon’s law is not stable; it extended access to other states in 2022.

I disagree on many points with Exit International at a previous session. However there is one thing from its submission I wish to quote:

Any framework that creates an exclusive ‘club’ of people with a distinct qualification criteria ends up discriminating against far more people than it will ever help. By its very nature far too many deserving people will find that they do not quite qualify to use such a law: they will not be sick enough, or their diagnosis will have an ambiguous prognosis.

The very proponents for this legislation admit to its arbitrary criteria and thus seek to extend it, and if legalised will succeed, as it becomes a question of equality of access for a "treatment".

In Canada in 2016 it was clearly stated that the country would not end up like Belgium and would be an exception. Do we think Ireland is going to be an exception to this tried and tested international trend?

Ireland founded palliative care and has a great history in leading the way. I am grateful that 90% of specialist palliative care is commissioned here. We must protect and nurture this. Do we want a society in which radical autonomy will inevitably result in incorrect deaths, or do we want to pursue the best end of life care with palliative care through evidence, diligence and compassion?

Senator Mary Seery Kearney

I thank the witnesses for their considered opening statements. Following Professor Watson's comment on the Spice Girls I interpret that next paragraph as questioning whether we should create a right for Irish people to autonomously be able to seek help to end their lives at a time of their choosing, to improve the number of people who are unable to live until they die, knowing that there were neither abandoned or had their suffering ignored. I do not see it as a juxtaposition of two differing positions. Instead I see it as being that in actual fact we are extending the care to those who anticipate a death that would not be of their choosing, to an infinitesimally small group of people. I see it within that context of caring. I am a little uncomfortable with the possibility that if we were to choose it, that is to say we are going to leave people abandoned. I think alleviation of suffering would be the motivation of those of us who are in the middle ground here in trying to make a decision. I would like Professor Watson to consider that.

I have met Dr. Cranfield and discussed the idea in the opening statement of the wish to die being transient. How do we do that?

I have a difficulty with Dr. Doré's use of the phrase "incorrect death". I have gone into the background reports, reviews and assessments on the Netherlands. I am a little disappointed not to see more action arising when perhaps a step regarding safeguards has been omitted. I think, however, that the use of the phrase "incorrect death" here is a little sweeping and consequently I need him to contextualise it for me.

Professor Max Watson

Regarding the first statement, I am suspicious of safeguards because I have not seen them really work. Today's safeguards are what another section of the population will take to court on the grounds that they are being legislated against. A person who is depressed could demand access to the same things as people who have a terminal diagnosis. Once we embark on this we are heading towards a situation where it comes down to people's individual choice.

That is why I had this juxtaposition. Is this about giving legal rights and supporting an individual's right to choose or is it about society making a commitment from a societal point of view, not an individual point of view, to do its best to support and help people? Yes, there is an overlap but it is very difficult to see safeguarding working because in every legislation where it started, those safeguards are then attacked in law.

Senator Mary Seery Kearney

When we talk about the alleviation of suffering, that would be the motivation of members of this committee and of those who are very firmly in the "Yes" camp. That is what I hear every time Deputy Gino Kenny asks questions. Is it that the definition of suffering can then be abused or challenged from a human rights perspective to open access to far more than was ever intended?

Professor Max Watson

Absolutely.

Senator Mary Seery Kearney

Suffering is such a subjective experience.

Professor Max Watson

Suffering is so subjective. I look after people about whom. on the face of it, you might say their quality of life is awful but they still ask me about the football results. In the case of other people who you think their suffering is not so much, it is huge for them.

An Cathaoirleach

I want to bring in Dr. Cranfield, please.

Dr. Faith Cranfield

I thank the Senator for asking about the wish being transient because that is fundamental to why we are concerned. We meet people daily who wish their lives were over. Our response to that is to "lean in" as Professor Harvey Chochinov said; to respond to it by seeking to understand why. I will try to illustrate this with a story as to why, perhaps, the idea of having the choice available to be dead as a solution to someone's situation is a risk to that person.

I want the committee members to try to imagine Mary. She is a grandmother. She looks after her grandkids after school and she is preparing for her other daughter's wedding. Mary finds herself sick. After months of chemotherapy she is in pain daily but is afraid to take morphine, because it is morphine. She is tired all the time and is trying to struggle with managing the household, which she has always done and watching her husband make a hames of it but he is doing his best. They are just arguing, which they have never done before. She is not able to mind the grandkids and watches her daughter, who is struggling to find reliable childcare. Mary, who always looked after everybody, is not able to do it any more because of her illness. They are all protecting one another and no one wants to talk about what will happen and that Mary will die. Nobody wants to talk about the wedding. Mary nearly falls over one day and just says, "God, I wish I were dead" in front of the family. That family absorbs her helplessness and feels helpless themselves. They just want her suffering to end too. For Mary, having that wish to be dead available would carry much more weight when she is considering what she will do next. If she meets palliative care, they treat her pain, they educate her to use morphine. She no longer has the pain controlling her so that it overwhelms her and makes her think of the future, what it might be like to die and how scary and painful it will be. They can let her take control of the pain. She is not so tired because she is managing her pain and because she is also learning how to manage fatigue. It is all right, for example, to take a nap in the afternoon. She then has energy for the family in the evening. She then gradually has a facilitated conversation with her family. They talk about the things that nobody wants to talk about and they address the wedding. This wedding will happen. Will Mary die at the time of the wedding? What happens is that they allow these really tricky conversations. The wedding is brought forward. Mary attends the wedding. Everyone enjoys it. They enjoy the ritual and being able to think about what it was like before Mary got sick and to have all of those memories and real conversations in anticipation of her time well before she dies.

That is what palliative care is. We describe it in biopsychosocial and it all sounds very technical but the reality is Mary's story. Mary is any one of us. It is people you know and it is people I know. If the healthcare professional also responds to Mary's wish to be dead with the same sense of helplessness and overwhelm as Mary and her family and just wants to end the suffering and on their menu is, "Yes, I can help you to die. I can make that happen for you", the risk is that she would have a death without any of those moments or celebrations I have described.

Deputy Gino Kenny

I thank the witnesses for appearing before the committee and for their ongoing work in their fields. In this ongoing debate about assisted dying we are trying to tease out if people in certain circumstances will be able to avail of assisted dying. Those are the parameters of the committee. Some weeks ago, the Irish College of General Practitioners appeared before the committee. I asked what was the percentage of deaths in Ireland that could be classified as very difficult or very complicated or painful. The reply was that some 5% or 6% of deaths can be complicated in relation to pain management. Do the witnesses accept that some people coming to the end of their lives do not want to go through weeks or months of pain and suffering? There is a cohort of people who could be in that position. Modern medicine is incredible, but can it ameliorate some of the pain and suffering that people do not want to experience? In that situation, should a person have a say in how they die to prevent that suffering and pain? Do the witnesses accept that assisted dying should be a choice for a small cohort of people?

Dr. Matthew Doré

I will put a question back. Does the Deputy accept there will be a proportion of incorrect deaths if this legislation is-----

Deputy Gino Kenny

I have asked Dr. Doré the question.

Dr. Matthew Doré

Yes, there is a proportion of deaths which are less desirable. Let us break them down. The proportion of deaths which are undesirable, a bad death so to speak, means different things to different people. Some people mean terminal agitation. The problem is we cannot predict that. By definition, if we do something pre-emptive before terminal agitation, we will be killing people or allowing assisted suicide to people who then do not go on to have terminal agitation. If we talk about bad death in terms of perception, some people will never perceive a death as a good thing because it is death. Some families never accept it. A third thing would be the-----

Deputy Gino Kenny

Dr. Doré must have seen people in severe pain.

Dr. Matthew Doré

Yes, and this is mainly young people with young families who want to live. It is not people who would access this legislation. I go back to Professor Watson's question about who this legislation is intended for. This will not solve that problem because it would pre-empt something we cannot predict. It is being based on fear of something.

Deputy Gino Kenny

I am sure Dr. Doré has given somebody a terminal diagnosis. I am sure all the witnesses have done so. This is part of the field in which they work.

Dr. Matthew Doré

The research shows that if a person has a terminal diagnosis, there is two-year period in which they return to the baseline psychological level they were at before. The Deputy is correct that suicide increases in the year after a terminal diagnosis has been given. This legislation would not facilitate choice.

Deputy Gino Kenny

I disagree. I think it would.

Dr. Regina McQuillan

This is a really challenging area. Sometimes bad deaths are not necessarily painful deaths. A bad death might depend on the person experiencing it, but also the people who are looking on. There is a challenge around physical symptoms and physical pain, but not as much as people would believe. The most difficult symptom people have when they are dying is, as Dr. Doré noted, terminal agitation or terminal delirium.

The difficulty with the term "delirium" is that person is not thinking clearly. They are very frightened and agitated. That is a very difficult situation to be in. When we say that person is not thinking clearly, they literally do not understand what is going on. They are completely confused and do not understand what is going on. That is very difficult. In those situations, where people have that level of delirium, we need to give medication that reduces it, and try to reverse the delirium in the first instance. Very often towards the end of life, that is not possible but we give them medication to have them feeling calm and relaxed.

Some people may have very difficult to manage pain. I have been practising palliative medicine for more than 30 years and what I think has been good is that there have been developments in it but not as many as one would like. There is not as much scope and research going into how to manage and improve symptoms, whether those symptoms are pain. A lot of the difficult symptoms we deal with are pain, breathlessness and nausea. A big problem we also deal with is fatigue. Fatigue is a very common effect of advanced illness. The things people really are concerned about-----

Deputy Gino Kenny

Does Dr. McQuillan understand why some people would want to prevent it from actually getting that far? Getting to the stage where they are sedated, they have a lot of pain and they are suffering. Can Dr. McQuillan understand why somebody would say, "I do not want to go through that; I just want to have a say in how I actually die?", which I think is a fundamental human right. Can Dr. McQuillan understand why?

Dr. Regina McQuillan

I can understand why people would want that. Deputy Gino Kenny is asking for whom should this be available. These are people with certain illnesses or certain categories of people. There are many people who live with lots of life difficulties. I know people are sometimes concerned about conflating people who wish for assisted dying with people who wish to die by suicide for other reasons. A lot of these things have very similar drivers. They are drivers for people who are fearful.

Deputy Gino Kenny

I completely disagree with Dr. McQuillan.

Dr. Regina McQuillan

These are people who are fearful of a situation and of what might happen. We need to be very cautious that we are not changing legislation when we are not necessarily-----

Deputy Gino Kenny

I do not think we should conflate the issue. I have said this many times. It is very disingenuous.

Dr. Regina McQuillan

I am sorry I do not mean to be disingenuous.

Deputy Gino Kenny

I am not saying that Dr. McQuillan is disingenuous.

Dr. Regina McQuillan

I am just saying there are similarities.

Deputy Gino Kenny

Others have been.

An Cathaoirleach

I thank Deputy Kenny.

Deputy Gino Kenny

Chair, can I ask Dr. Watson the same question or I can come back at the next stage?

An Cathaoirleach

Go on, briefly.

Professor Max Watson

A lot of what the pain people experience is anticipation. It is exactly as the Deputy described, that fear of losing control and of being in pain. That fear is-----

Deputy Gino Kenny

That does happen.

Professor Max Watson

The fear, absolutely does happen. People have that fear.

Deputy Gino Kenny

People are in pain.

Professor Max Watson

Why just leave it at pain? People have a fear of being incontinent. People have a fear of being dependent. People have a fear of being a burden. It goes back to that question of what it is you want with this legislation. Is it to allow people the right to decide they have had enough and they want their life to end? It is conflating the issue of pain when it actually comes down to preserving autonomy. If autonomy is your goal then-----

Deputy Gino Kenny

That is one aspect of the debate we are having. I will come back in the next round.

An Cathaoirleach

Deputy Higgins is next.

Deputy Emer Higgins

I thank the witnesses and Dr. Cranfield for taking us through Mary's story. That really does ground us a little in why we are here and what we are talking about. I thank all of the witnesses and their professions for everything they do day in, day out.

My first question is for Dr. McQuillan. A lot of what she spoke about is the trusted relationship. I would be interested to hear her view on how, if the Oireachtas decided to legislate for assisted dying, we could continue a trusted relationship.

I have a question for each of the witnesses, so I will ask them now and hand the floor over. Dr. Watson brought up Northern Ireland and it is something I had not concentrated much on. Before we legislated in Ireland for the likes of abortion, we saw a lot of people go abroad to avail of it. Currently, we know a lot of people go abroad to avail of assisted dying.

That is something I had not really considered myself. I would like more information on that. Regarding the different fears that people have and how understandable they are, we can all put ourselves in the situation of imagining ourselves facing the same thing. When decisions are driven by fear, quite often the end result is a decision to enjoy the here and now and live life for every moment. That is very difficult to do for a person experiencing intolerable pain and suffering and losing their autonomy. How do we navigate what is fear of intolerable pain and suffering, what is intolerable pain and suffering and how anybody can make that determination?

Dr. Doré has spoken about incorrect diagnosis. What safeguards does he suggest to prevent this from happening?

Dr. Regina McQuillan

Regarding a trusted relationship, as somebody working in palliative care and medicine, whenever I meet a patient for the first time I do not tell him or her I work in palliative care. One cannot say this first because it will frighten people. I say to a patient that I have been asked to come to see them because I look after things like pain and symptoms. I try to open up a conversation to see what the patient's understanding of their illness is. Having a serious illness is quite a difficult and frightening thing to deal with. People are concerned about what is going to happen now and what is going to happen in the future. Their main requirement is to try to have some better understanding and reassurance from their family and healthcare team as to what we can do to help them. People are concerned about palliative care and afraid about medication. They are afraid that they may end up having to go to someplace that they do not want to go. They might want to die at home, for example. From a palliative care point of view, particularly with patients coming into the last months of life, we often discuss the changes they may be seeing in their bodies being related to an underlying illness and not necessarily being related to the medication they are taking. Sometimes people are reluctant to take medication because they feel the medication is causing the symptoms. Patients may feel that way and sometimes the family can as well.

We end up having many discussions with people about what is the best option for the person. Having the understanding that we are very clear about what it is we are doing is really important because so many people are fearful of different medications. If a person in palliative care for example, starts on a syringe driver they may think somebody is trying to kill them. I have those kinds of conversations on a regular basis with patients and their families. We have to try to counter the belief and the concerns people have. That is why I am concerned that any change in legislation allowing assisted dying will make it more difficult to be able to counter these beliefs.

Professor Max Watson

Regarding the point about Northern Ireland, I just realised that if we have one part of this island with certain legislation and another part with other legislation, there will be a flow between the two, and that will cause real difficulties. For example, a doctor referring could be struck off in one jurisdiction for what would be legal in the other. There is also the question of what information can travel with the patient. That information needs to travel in order to make it as good an experience as possible. These are all these nitty-gritty aspects to be considered

Deputy Emer Higgins

How does it work at the moment if someone from Ireland, where assisted dying is not legislated for, goes to Switzerland?

Professor Max Watson

It is the same issue of how much information is travelling and is that as good an experience as it possibly could be. The Deputy raised a very good point. Unfortunately, with our history I can see it getting onto the political agenda which will not be helpful at all.

Dr. Matthew Doré

Regarding the definition of an incorrect death, I am not au fait with the Irish history of capital punishment, but I am more familiar with that of the UK so I will refer to it.

It was abolished under a large premise of a few cases, those of Timothy Evans, Derek Bentley and Ruth Ellis who were subsequently killed and then found to be innocent. They were hung in the fifties and sixties and subsequently found to be innocent. That was with a full judicial court inquiry, months of deliberation, access to the finances and every other aspect of that person, and they came with an incorrect decision. We have had the case of Harry Gleeson here. The issue then becomes that, with this framework of assisted dying, there are going to be incorrect deaths. There is no denying that. That is what I mean by that. I think the committee heard about someone in Canada who was misdiagnosed with COPD and subsequently had medical assistance in dying, MAID. That is an incorrect death because incorrect diagnosis led to an early death. A prognosis which is wildly out is surely an incorrect death. These are incorrect deaths. That is my definition of incorrect death.

What is the balance? That is my real point. As legislators, members are not only advocates for individual autonomy; they are also advocates for societal safety. They are balancing those two aspects of law. While individual choice is a thing, it is up to a limit. Treatment can be withdrawn, and we allow things to happen in that regard, but we do not actively intervene because it affects the wider population. That is the position of the APM.

Deputy Emer Higgins

Do any of the witnesses have any comment to offer on making a distinction between the fear of intolerable pain and suffering and the reality of living intolerable pain and suffering?

Dr. Matthew Doré

That is an incredibly good question. As Professor Watson said, it is almost an operation. Someone with a messy spare room that is completely scattered with everything has a choice. They can either work at it, fix it and make a nice spare room or they can destroy it and remove that spare room from their house. The latter is not fixing the problem. It is just removing the spare room from the house. One needs to have the time and energy to spend with the patient to work through those things. As the Deputy will know, and people have said before, once these things are addressed, the request for dying diminishes or disappears.

Deputy Alan Farrell

I had not planned to contribute but a couple of remarks have been made that have spurred me to do so. The witnesses will appreciate the committee has been in deliberations now for five months. To respond to some of the remarks that have been made, there is not a single member of this committee who is unaware of the consequences of a decision the committee may make should members choose to recommend a change in the law. Our jobs, as has been correctly pointed out a number of times, is to try to thread a needle and figure out what is in the best interests of the Irish people and whether it will be acceptable to the majority of Members of both Houses of the Oireachtas. There is also the question as to whether such a change will be acceptable to the general public. That is a matter that we have to consider because that is our job and our day-to-day political nose, if you will.

Members of the Oireachtas who have served for seven or eight years recognise that there are two things at play when it comes to these fundamental decisions. One is an acceptance that we make mistakes and, to be forthright, that we must have compassion for each and every person in the State. Sometimes, we as individuals may not be subject to the circumstances in which others live and we may not even understand those circumstances but, that being said, we must still have compassion. We have seen that in recent years. I am not drawing an analogy with the removal of the eighth amendment but there must be a recognition of the process that these Houses went through in order to achieve that. Ultimately, it was a decision of the people and they made that decision by a huge majority.

There are a couple of things. First, I thank Dr. Cranfield for her illustrative example. It was very helpful for a number of different reasons. There is also another side to that. There are individuals who might go through both processes because they are not mutually exclusive. If an individual is in receipt of palliative care and support, especially from medical professionals but most importantly from their families, they still might make a decision to not go through that very last stage in their regrettable passing. This might be where they lose their faculties and their control and, as has been mentioned by several members, they might become a burden, or perceive themselves to be a burden. They might be going through intolerable pain during that process. I am of the view that with the necessary safeguards, notwithstanding what has been said, it is possible to thread that needle. We just have to do so very carefully.

On Dr. Doré's point, I recognise we all make mistakes. I do not think there is a person in this room who has not made a mistake they regret, either personally or professionally. We learn and we evolve. I refer to Dr. Doré's point about capital punishment versus the compassionate approach and even the rehabilitative approach we have now with regard to our prisons. There are miscarriages of justice all of the time. Dr. Doré works in Northern Ireland and would be very much aware of the miscarriages of justice that have occurred, and of those yet to be even addressed. However, we are human and we make mistakes and we learn from those things.

With the necessary safeguards, we can draw a line and say, "No". We have spent weeks and weeks on this with regard to mental health. In my opinion, it is not a ground for access to assisted dying under any circumstances. Is this a choice a perfectly health individual can make? It absolutely is not in my opinion.

I will not name them, although their representatives have come before this committee, but I recognise there are many examples of individuals who have come to the attention of the public in this jurisdiction who wanted to avail of assisted suicide and who ultimately did in certain instances but in other instances were blocked. Their passing, and the circumstances of their passing, could have been different. We do not know the exact details, of course. Only their doctors and their families know that. I suspect there are people here who know exactly what we are talking about as I do.

Like everybody in this room, I have lost somebody who went through a horrific end to what was a fabulous life and we have recognise that. If the Chair will forgive me, I have made a series of statements without questions but I wanted to put them on the record.

An Cathaoirleach

That is okay.

Deputy Alan Farrell

My last point is to Dr. Watson and concerns the provision of information between jurisdictions. There is absolutely no question whatsoever either in law or in practice that an individual would be struck off for passing information to another doctor in another jurisdiction with the permission of the patient. It is not the doctor's information, it is the patient's. They make the choice. I want to make that clear.

Senator Lynn Ruane

I thank the witnesses. I concur with a lot of what Deputy Farrell just said. I know Dr. Cranfield probably thought she was illustrating one thing but it further cemented another thing for me, which was the phases of intervention and how they may change over time. The interventions are probably as transient as the want to die in the sense that our condition can change and increase and our thoughts can change and increase. It really allowed me to separate out the role of palliative care to a certain point for I hope many people. However, a small minority of people may move beyond the scenario Dr. Cranfield spoke about and it is about how we capture them.

It made me incredibly sad when I read all the statements. We go to funerals where we hear people thanking the palliative care team, the nurses and the hospice. It makes me incredibly sad to think that the appreciation people feel for that care would be in any way removed for people who chose to die in a different manner from the one set out here today. I would hate to see Ireland legislate for something and then have the palliative care and hospice movement remove its skill set, care and compassion and its decades of experience in determining whether something is an intervention or psychosocial and to be able to add that level of knowledge.

I understand the fear people have that if they engage with palliative care, it may look like they are seeking assisted dying. Of course, all that work needs to be done. I understand that people are afraid when hospices are even mentioned and death feels near. Dr. McQuillan referred to the fact that assisted dying would devalue life. For some people having palliative care providers understand that a person's will and capacity to make such an important decision after all of the interventions would actually add value to the lives. Some people would feel valued by the fact that care providers understand that some people make a certain decision that providers may not want for them but under a legal structure should be part of providing for them.

What do the witnesses feel about a scenario in Ireland where we have assisted dying and that palliative care removes itself from the equation? How are those people's lives valued and how would that be separated from the idea of end-of-life care? I would hate to see a scenario where that skill set was removed from people who may choose differently from what was set out today.

Professor Max Watson

I would hate to see that happening as well. We are with people. I struggle with this issue. I learn from our colleagues in New Zealand where that division has occurred and it has been really difficult. It is in the nitty-gritty of how we legislate and how we take account of the processes and procedures and allow for conscience and the opportunity to have assisted dying alongside palliative care. I have not seen examples of that working well but if the committee is committed to it, then it has to be part of a discussion and working it through.

Dr. Faith Cranfield

It is very difficult for us to do our job and to thoroughly and wholeheartedly respond to someone who wishes they were dead. Part of how we do so is to value them and their lives even when they do not value them themselves, until they do so again. The vast majority of people will value their lives again. They will want to be alive today and tomorrow.

Senator Lynn Ruane

What about for those who do not?

Dr. Faith Cranfield

There is a small subset of those who do not. Yes, we sit with those people and they see that we still honour and value them and they feel it and we know it.

Senator Lynn Ruane

Would Dr. Cranfield sit with them if assisted dying was legal and they asked for it?

Dr. Faith Cranfield

It is really difficult to imagine. Certainly, as a representative of the IPMCA, we have not asked members. In Scotland, when legislation was put forward, 40% of palliative medicine consultants surveyed said they would resign if their organisation was providing it.

We have not asked that question of our cohort of patients.

Senator Lynn Ruane

As an individual who understands death, can Dr. Cranfield imagine herself not sitting with someone who chose to die differently than she imagined for him or her?

Dr. Faith Cranfield

Having any involvement in it other than non-abandonment would for me be very difficult to tolerate, but I am speaking personally. At the same time, because of how I approach every single person I meet, I cannot imagine abandoning them. To suggest that is what would happen is difficult. I cannot speak for services. I cannot speak for colleagues. I refer to trying to help someone who comes to me and who wishes they were dead and being wholeheartedly able to question them and ask, "Why? Tell me what it is about" and that being a good. If in 20 years' time, it is my daughter or somebody else and it is already considered a good to no longer be alive and that is a good option, it would be very difficult to do the job that we do.

Dr. Regina McQuillan

I suppose I may be echoing some of what people have said. It is important that palliative care is involved with the support of people with life-limiting illness. That involvement needs to continue and be enhanced. If there is a change in the legislation, that might depend on what way the legislation is changed and how that is aligned.

It is important people have access to good palliative care. In some countries, there is talk about people being made aware of palliative care but it difficult sometimes being made aware of palliative care if one already fears palliative care and palliative care is not going to help one. If there is to be any change in legislation, regardless of what that change is, people working in palliative care will want to be able to see, to assess, to treat, to manage and to support people who are living with life-limiting illness and to be able, hopefully, to offer them options which are beyond what it is they may think is the most important thing for them.

Senator Lynn Ruane

What if it includes the option that is being made legal, which is assisted dying? Does Dr. McQuillan then see herself removing herself from the room?

Dr. Regina McQuillan

I am here partly on behalf of the Irish Palliative Medicine Consultants Association. This is not something we have surveyed our members about. If somebody is dying, and I have been with people who are dying, it is a very difficult situation because it is very difficult to see that this will be an option. I have dealt with people who are dying who have decided not to eat and drink, and I have stayed with those people. I have offered them as much help as they would accept - anything is really important. I have stayed with people who have made these type of decisions about stopping active treatment, including stopping eating and drinking. It important to do that.

Dr. Matthew Doré

To be clear, we will look after absolutely anyone, of any belief and in any circumstances. What Senator Ruane is asking is slightly different. Should we be complicit in doing it? The answer to that is, "No". The position is that this should be out with palliative care medicine in its entirety.

The ethoses interact. They do not work in the same way. We, as people said, instil value and worth in people. In fact, our society does. That is why we have suicide prevention, etc.

What one is asking people, hospices and palliative care to do then is to self-assess the value and worth. Only 1% to 2% of Canadians do this, so 99% or 98% do not. You have to have a conscientious clause for the 98%.

Senator Lynn Ruane

Statistically, if we look at how many people die by the time they get the hospice care, it is usually right at the end of life.

Dr. Matthew Doré

No.

Senator Lynn Ruane

I do not mean for younger people who end up in a hospice but people with what are usually end-of-life conditions such as a cancer diagnosis.

Dr. Matthew Doré

Not really, no. Some 50% in my hospice discharge home - the majority in the last year of life. I do not know the exact numbers, but most of them are not going in actively dying.

Senator Lynn Ruane

What percentage of cancer patients, for example, at end of life would end up in hospice care?

Dr. Matthew Doré

According to Hospice UK figures, 11% to 15% are known to specialist paths of care. I do not know what that means in terms of hospices. One can look those numbers up but I cannot tell the Senator off the top of my head.

Senator Lynn Ruane

If that percentage of people were in hospice care, they will potentially die in a hospice and that is the reason they are there, and if they chose under a legalised model that they want assisted dying, and, say, their proximity to death is fairly close and they want to bring that forward, is Dr. Doré saying under a legalised model that hospice would say it would not facilitate that?

Dr. Matthew Doré

That is exactly what is happening in New Zealand.

Senator Lynn Ruane

Even though the person is one, two, three, or six weeks away from death would they be moved? It does not feel like patient-centred care then.

Dr. Matthew Doré

No, it would not. That is really unfair. We dedicate everything to being patient-centred.

Senator Lynn Ruane

Where would the patient go?

Dr. Matthew Doré

It cannot be predicted that somebody will die in six weeks.

Senator Lynn Ruane

I am not talking about that. I am talking about someone who chooses that, under a model and where it is legal and they are in the hospice and will die very soon. Families are being called in. We know the person is going to die, whatever the number of weeks put on it. We have a ballpark figure. The person says that under this model, they would like to access assisted dying because they do not want to wait a few weeks or the few months they have been given. Is Dr. Doré saying he envisions those people, with whom a relationship has been built over the years through palliative care or with the hospice, being moved somewhere else to avail of it?

Dr. Matthew Doré

I do not know the system. That has happened in Canada and hospices have been shut on the basis that they are not facilitating medical assistance in dying, MAiD. If 98% of this sector does not want it, one has to question whether legislation forcing it to do it in their premises seems a massive conflict and creates an existential crisis in the workforce. The Senator must see that.

An Cathaoirleach

I thank Senator Ruane and Dr. Doré. Deputy Troy is next.

Deputy Robert Troy

I thank our witnesses. One of the witnesses spoke about how, if we address the fear of dying, we will fundamentally diminish the number of people who would request assisted dying. Dr. McQuillan said that on average palliative care looks after 28,000 people per annum. Does she have any indication what percentage of that 28,000 actively look for assisted dying? This is bearing in mind that it is not legally available in Ireland, but people who talk about the option of travelling to a jurisdiction where it may be available. Do we have an idea of the numbers who are actively looking for that option at the moment?

In Dr. Doré's last contribution with my colleague, he spoke about how assisted dying does not align with palliative care. I always worry about introducing parameters because the evidence shows that wherever parameters are introduced they tend to be broadened over time. Does Dr. Doré feel that if we were to introduce a model with strict parameters to take account of the minority of people who, in their full knowledge, genuinely want to have this procedure carried out, it could be established as a stand-alone unit? A witness who appeared before the committee gave the example of where assisted dying could be established and offered through a stand-alone service where it might not align with palliative care.

I have two final questions. It was worrying to hear, although anyone who practices politics like we do will be aware, that there is a difference in the level of service in terms of palliative care, depending on what CHO region someone resides in. Will someone elaborate on those gaps and what needs to be done to address them and ensure we have fit for purpose palliative care for people at the end of their lives?

Finally, I am not sure who spoke about elder abuse and how one in five suffers from it. That is quite significant and 20% of the population. Will someone delve into it a bit further in terms of concerns about the elder abuse issue?

Dr. Regina McQuillan

There is uneven development in the specialist palliative care services around the country. Currently, there are ten specialist palliative care centres providing comprehensive care with inpatient units and another 19 services which do not have inpatient units.

A new palliative policy has been drafted and is awaiting publication. I do not know what is in the policy, but assume it is a development and improvement on what we have at the moment. We need to have better services and education. The education needs to be both for people working in specialist palliative care and for all other healthcare professionals to have a better understanding of what goes on. We also need better public education so that people have a better understanding about living with life limiting illnesses and what their options are. Better research is also needed. During my time working in palliative medicine there has been improvement in some symptom management but not it in most symptoms. Funding for palliative medicine research in Ireland is minuscule. That is a big challenge.

Dr. Matthew Doré

Regarding elder abuse, from the meta analysis of many papers, we find that one in five suffers from this. It categorises abuse in many different ways. Coercion is actively getting someone to do something, but there are much more subtle things as well. For example, putting an onus on somebody to do something. Instead of selling his or her house and going to a nursing home the person may feel pressured to have assisted suicide and then the money can go to their family. There can be pressure to think like this and over time that can become an expectation. That is part of the whole slippery slope.

Please remind me what the first question was again.

Deputy Robert Troy

My first question was regarding the fact that 28,000 people are supported through palliative care, and bearing in mind that it is not legal, is there anybody requesting assisted dying? Is there a trend in this regard?

Dr. Matthew Doré

I do not know the specifics of this country, but there have been a couple of studies in the UK. I do not know the exact numbers but a couple of studies note that is often a transient request when we get on top of things. That is because people are in distress. This has to be understood, sometimes pain is a huge factor. People do not know how to describe distress and they call it pain. They are in pain, there is physical pain and total pain, which is encompassing all the other aspects of it. They are distressed and they do not know how to stop it. Palliative care takes a meticulous approach, going through and understanding things, valuing the person and trying to work through their physical, social and psychological symptoms. With all those things, the wish to die decreases hugely.

As people have said, there is a small minority, for which this does not apply. It is important to note that very strong proponents such as Noel Conway, who was in the media, died a peaceful death. That was in the newspapers. Even one of the strongest proponents for it, died a peaceful death. This comes back to the fundamental point of where is the evidence that we need this and what is the population we are trying to help. In a Dutch study, 43% of people had at least one unresolved symptom and that country has the most liberal laws. It is not changing symptomology across those jurisdictions; they have exactly the same. Who are we doing this for? Is it simply that we have become a society that is more and more afraid of death? Ireland is good in that it has a figure of 10% for non-complicated bereavement. The national average in the UK is 15%. That is because in Ireland there are many open caskets and a much better attitude. We need to emphasise that death is part of life and a natural event and not something to be medicalised and pre-empted.

Deputy Robert Troy

In terms of aligning it, what if there was a stand-alone service? Clearly, it is something that flies against what the witnesses are trying to do from a palliative care perspective. What would Dr. Doré's view be on a stand-alone service for the small minority who wanted it?

Dr. Matthew Doré

APM does not have a position on that. Rather we say it is not within healthcare or palliative care.

Senator Rónán Mullen

I welcome our guests again. This has been the best session we have had. It has been very clarifying for anybody who is listening carefully. I am sorry there are not more members of the committee here to hear every moment of these exchanges. It is just the Cathaoirleach and the diehards. Deputy Troy's questions were important as well.

My colleague and friend, Senator Ruane, made me think by her incisive questioning. My mind went to the following place when listening to her, and I want to take our experts into this territory. I refer to the kind of moral pressure that flows if the law changes and if this is available as a choice for some who insist their choice is what must have sway in the final analysis. It is probably not only a question of the moral pressure on medics that they are the experts. We have not had a single palliative care person in the committee advocating for a change in the law. The contrary has been true. It does not appear to be for any particular dogmatic reason but that hey do not believe this is good medicine or that in the end this is not the kind way to treat people. Yet, if they are asked to be involved in it, they might well be made to feel like bad people for not wanting to go along with what they would regard as bad medicine. That illustrates some of the social dynamics at play.

It also worries me that if this moral pressure could be placed on medical healthcare professionals, then what moral pressure comes on those who are in those care settings and who might not otherwise want assisted dying? This was brought out to me in an article by Hugo Rifkind in The Times. He was fair in his assessment of the late Diana Rigg's insistence on euthanasia as a right and a choice. He said that to some degree there is an unanswerable element to it. He also worries about the constant expectation that the patient must be deciding proactively how much they should continue to bear, mentioning the implied morality of being terminally ill, being cared for by others and not wanting to die. Proponents of a change in the law here might be more inclined to consider the problem there is if it could be made clear that there are other victims if you change the law; that it is not just about what the individual wants and that nobody differs with that choice.

Let us say you could have palliative care and assisted dying, and we had an Australian expert last week saying we could do so, and then somebody makes a life or death decision. Is it really like that or does the existence of the life or death decision spoil what palliative care can do? I do not want to put words in the mouths of the witnesses but is that the problem? Does it change palliative care? What has happened internationally in the funding of it? What do the witnesses have to say about all of that once some form of assisted dying is introduced? Does it spoil what can be done for everybody?

Dr. Regina McQuillan

That is an important point. Introducing the legislation, although it might be for certain people, changes the entire landscape for society, particularly for people living with serious illness, because you are then creating this as a different option. That leads to a change in how people think about what they should be doing. If it is an option that assisted dying is open to you, does that create this unintended coercion that because your family member might need to give up work to look after you, do you then feel that because there is this option of assisted dying, I should take it so there is less pressure? Family members will never say that but you may feel that. That is an unintended coercion.

The issue of the abuse of adults is an important one. I mention people over 65 who are abused by their family and friends and they are already in a vulnerable position. Introducing a change in the law changes society. It changes how you look at and perceive people. Public opinion is always interesting and public opinion polls are often in favour of this. Public opinion polls also change and move. In Canada five or six years ago, something like 40% of people were in favour of assisted dying for people with mental health problems.

The most recent poll showed that 80% of Canadians would avail of assisted dying for people with mental health problems while 51% would avail of assisted dying if people could not get healthcare, 50% would avail of assisted dying if people were disabled and, really interestingly, nearly 30% were in favour of assisted dying if people were poor or homeless. It is quite a change in society-----

Senator Rónán Mullen

Is Dr. McQuillan saying that it makes people more intolerant of other people's suffering or needs - of paying for their care?

Dr. Regina McQuillan

I am not too sure if it makes them intolerant but it looks like it becomes a solution to life's problems. A previous witness spoke about this. The original idea behind assisted dying was trying to avoid a difficult death but now it is being used to avoid a difficult life. In parts of the Netherlands, including parts of Amsterdam, 15% of all cancer deaths are from assisted dying. It does change what people know, want and expect so it brings about wider societal change and I think that is really important. Putting it into healthcare confuses things further.

Senator Rónán Mullen

We are talking about the kind of people who are unintendedly coerced. They are not even the incorrect deaths referred to by Dr. Doré because they would be technically eligible. The College of Psychiatrists of Ireland spoke to us about people with mental health issues falling through the cracks of this. They would not be incorrect deaths either because they are technically eligible but they are people made vulnerable by the existence of this option.

Dr. Matthew Doré

We in palliative care see how vulnerable people can become. This is why there is consistency here. There is that delicacy to them. People going to Switzerland has been mentioned. The argument of equality is exactly the slippery slope. You are essentially arguing that people are going to Switzerland and, therefore, we should have it here but that is exactly the same argument as, "Well I'm 17 rather 18, therefore, I have should have it" or "I don't have capacity, I've got dementia or Alzheimer's and it is going to get worse, therefore, why can't I have it pre-empted?" Another argument is, "I'm suffering for longer with a chronic illness, therefore, why does it have to a terminal diagnosis?" All those things become arguments of equality of access to a medical treatment.

To answer the Senator's question about whether palliative care is affected, the answer is "Yes". This has been shown internationally. A really good paper said that the average growth in palliative care services has stalled in countries where assisted dying is legal compared to other countries without assisted dying. Notably Belgium and the Netherlands experienced no growth between 2012 and 2019. We have seen that in Australia where voluntary assisted dying has come out of the palliative care budget and it has lost lots of money that way. Not only does it take palliative care away, it puts the whole of palliative care into existential crisis. The majority sees that the ethoses do not match. That is the truth of it.

Dr. Faith Cranfield

It could spoil palliative care. We do not exist as anything without looking after our patients. The presence of a choice makes our work more difficult but that is not our concern. Our biggest concern is exactly as has been described by the Senator. I go back to the case of Mary. She looks after her family but at the point where she was overwhelmed, she was not able to do that anymore. She did not know herself anymore because of the physical symptoms-----

Senator Rónán Mullen

To clarify, does it spoil the ability of palliative care practitioners to reach and address people's suffering?

Dr. Faith Cranfield

Yes, because she now sees it as a much more reasonable solution to her distress. When she is distressed, feels a burden and does not recognise herself, she sees death as a much more reasonable solution. That makes it a lot harder for us to protect her from that feeling of being a burden, particularly with a family in its shared helplessness rowing in behind that, and to support her to become herself in ways she recognises again and to go back to being the mother she normally is, maybe in spite of the fatigue and needing help with things and being able to have those really important discussions she has been protecting her family from. Once they are had, she can continue to protect them.

An Cathaoirleach

Thank you, Dr. Cranfield.

Deputy Gino Kenny

Voluntary assisted dying can be introduced in Ireland safely with very robust legislation. There are a number of variations of the model we have been looking at across the world. The model I would look at in particular exists in New Zealand and Australia. It is obviously a very contemporary one. It can be implemented in the very near future for specific circumstances which would allow people to avail of assisted dying. I completely understand that this runs contrary to all of the training and beliefs of the witnesses.

I refer to diagnosis and prognosis. I am sure the witnesses have had very difficult conversations with people who have asked them how long they have to live. That can be difficult. Even saying that to somebody can be difficult. In the professional opinion of the witnesses and based on their previous experience, when somebody asks that question do they generally get it right in terms of time limiting conditions? Have they told somebody who asked them the question that they think they could have less than six months to live? Things can be different for other individuals, but generally in respect of prognosis and diagnosis when doctors in a field provide a prognosis for somebody in particular circumstances are they generally correct?

Professor Max Watson

The answer is that we are not good at it. We generally see patients a lot closer to their death. When we see someone deteriorating on a week-to-week basis we talk in terms of weeks and on a day-to-day basis we talk in terms of days. Traditionally, we have not been good at prognosticating accurately. Our focus is not so much on time, but rather on trying to help people be as comfortable as possible for as long as possible. Those are our skills. I understand the Deputy's compassion and desire to legislate. As a doctor, I am not trained to detect coercion or manipulation. I am not great at prognostication. Studies show that we are not great at identifying depression. There is so much uncertainty.

Deputy Gino Kenny

I understand that. Obviously, for people at that particular time of their life this is a complicated area. However, if somebody asked a doctor how long they have left can they give some sort of assurance?

Dr. Matthew Doré

We are not so much ignoring the time but rather are asking what is important to people and why they are asking that question. We want to know why people are asking about time.

Deputy Gino Kenny

I am sure it is a very common question that people ask.

Dr. Matthew Doré

Yes. Our reply is to ask why they are asking us that. It is about exploring that. Sometimes people have things to do or want to write letters to family. We want to know the reasons behind the question.

Deputy Gino Kenny

I am sure it is a very common question, probably the most common question you will come across.

Dr. Matthew Doré

Exactly. It is one of the most common questions, and we answer it as honestly as we can but with an exploration of the reason for the question. As Professor Watson said, we get it wrong. The evidence points to that. The longer away it is, the more wrong we get.

Deputy Gino Kenny

I know it is not an exact science. If somebody is given limited time on this earth, generally, from my experience, palliative care gets it bang on to a certain degree.

Dr. Regina McQuillan

In my experience, if I am ever giving a prognosis I always qualify it with the statement that I am likely to be wrong and I try to avoid being very precise. Research shows it is very difficult to be precise about this.

Even from the perspective of end of life care, we are here from Ireland and the UK. In Ireland, end-of-life care describes the last hours, days and weeks of life and in the UK it is called the last year of life. Even from a government policy point of view, there are those broad differences. It is a difficult thing to do. When you give people prognoses, you try to qualify what it means. That is partly, as Professor Watson asked, why do people need to know. You are trying to help people to make appropriate decisions.

Deputy Gino Kenny

It is a very reasonable question.

Dr. Regina McQuillan

It is a very reasonable question.

Deputy Gino Kenny

I am sure it is the most common question Dr. McQuillan comes across.

Dr. Regina McQuillan

I always say I cannot be very precise on this.

Deputy Gino Kenny

That is a very reasonable response.

An Cathaoirleach

Thank you all. Senator Ruane, please.

Senator Lynn Ruane

I am thinking of the patients Dr. McQuillan spoke about who she sat with and who refused medication. That is already a right, in that people can withdraw their desire to have any sort of treatment or to eat or drink. Senator Mullen spoke about the moral pressure when things change. However, the end result there is that an intervention that goes against all the other principles people put forward on prolonging life like why does this person want to die and the suggestion that if we give them a certain amount of interventions or psycho social supports, they will not want to die. There are still people who will choose to die by the means currently available to them, namely, to refuse medicine, food or water. In those moments, does Dr. McQuillan not see the hypocrisy between those positions? I know one is passive and another active - I understand that and I do not need to go into it - but the end result is still the same, in that the person is choosing to die as they wish to die and they are very intent on that. In those moments, which I am sure is hard to watch, I think an alternative would be better than someone starving or dehydrating themselves to death or refusing all types of intervention. Surely assisted dying in that moment would be a more humane approach to someone who was intent on leaving the world.

Dr. Regina McQuillan

It is a very difficult situation when people are refusing things that can help them. Very often people refuse medication, such a chemotherapy, and often those decisions are balanced and well made. It is very difficult. I have had only one person talk about going to Switzerland. We were very happy to talk to him and advise him how to make his plans, although he did not actually do it in the end. Only one person ever that I dealt with stopped eating and drinking. It is very, very difficult. However, while it might be very difficult for some people, changing the law, the legislation or the society would harm more people than an individual person. For me, as a doctor, you are looking after the patient in front of you but you are aware of the wider patient group you might be dealing with and the wider patient group are people you have to see that day, people for whom you service or people you are not seeing because you are seeing other people. You are always aware of the wider patient group and wider society. For that reason, although I am aware of the distress a particular person may have, I must try to think about what would a change mean.

Senator Lynn Ruane

Why does the idea of someone withdrawing medical care not have the same impact as assisted dying? You could say the same because we allow for the right to refuse medication legally. Why has that not had a knock on effect on everybody who might think they will do that when they see that people want to avail of assisted dying? The public support is there with people saying they want to see some change in this regard. We already have a way for people to die within the legal framework in terms of resisting medication but it does not have any ripple effect into society where everyone chooses that just because it is there as an option. It is the same with abortion care or reproductive rights; we do not have people who choose it just because it is an option. I think it somewhat undermines the value of people’s capacity to be able to choose what is or is not right for them while also ensuring that supports are in place for those who may not understand the options that are available to them.

Dr. Matthew Doré

May I try to answer that really quickly? Paths of care is letting nature take its course, controlling what nature throws at us, symptoms or whatever-----

Senator Lynn Ruane

Then you would not give people morphine. It would not be medicalised at all.

Dr. Matthew Doré

Morphine does not kill people. It is controlling symptoms and allowing nature to take its course-----

Senator Lynn Ruane

That is not nature taking its course. We intervene to prolong deaths. That is not nature taking its course.

Dr. Matthew Doré

Yes, but palliative care is letting nature take its course. Removing treatment is returning things to the natural course of events. It is not actually a right to withdraw treatment per se. It is a right in that we are not allowed to force-feed or force-treat people. We are not allowed to force oncology or chemotherapy on someone. We are not allowed to force food on someone. I have never seen someone voluntarily stop eating and drinking.

Senator Lynn Ruane

I have.

Dr. Matthew Doré

That is the difference. In a society in which we force treatments, that would have knock-on consequences. That is allowing people to withdraw things to allow nature to take its course. We control that.

Senator Lynn Ruane

I do not agree with nature taking its course because if one goes back to the invention of palliative care, medicalising death has already happened in how we prolong life at a particular stage or give medication. Allowing something to take its natural course does not include morphine or painkillers.

Dr. Matthew Doré

It does. Of course it does.

Senator Lynn Ruane

Why does it? That is also a human invention. How is that the natural course?

Dr. Matthew Doré

We allow nature to take its course but control what nature throws at us. If it is throwing us symptoms such as nausea or shortness of breath, I am treating those symptoms.

Senator Lynn Ruane

Why is the capacity of one's mind to choose to die not part of the natural course? If we can say that all these instances and external things form part of nature, then some people's minds and their capacity to choose something is also within that field of nature.

Dr. Matthew Doré

Yes. They can choose to return to the natural course of things. One can choose to be taken off ventilation or to stop chemotherapy. It is not a choice in that way. The Senator is looking at it the wrong way. It is because, legally, we cannot force things on someone. The Senator's perspective is that we would force chemotherapy and stuff on people.

Senator Lynn Ruane

It is not, actually.

Dr. Matthew Doré

We do not do that. We allow them to choose to return to their natural course and to control what that natural course-----

Senator Lynn Ruane

Their natural course from what point in life? Going back to the natural course of what? They are slowly moving closer and closer to death. Maybe they are becoming more incapacitated. What does Dr. Doré mean about returning to their natural-----

Dr. Matthew Doré

I mean that people can refuse chemotherapy because, after much consideration, it would do more harm than good. That is us not prolonging life. That is them returning to what trajectory the cancer would naturally have followed. I am not saying we can predict the cancer trajectory, as the Senator has heard, because we cannot predict prognosis very well, but we are returning to the natural course of events had we not intervened. That is what I am saying.

Senator Rónán Mullen

I am grateful to Senator Ruane for reminding us that there are some fundamental philosophical choices and outlooks in play here. I compliment her on that. I have to say that I see a huge distinction. For me, it is about human dignity. Medical intervention is obviously good. It is part of the gift that has evolved through the millennia that we can do these great things to alleviate pain and suffering, to enable people to enjoy life for as long as possible, and to live well for as long as possible. Human dignity demands that one would never violate people by forcing medicine on them. At the same time, it seems to be that the lesson of today's exchanges must surely be that human dignity also demands that one would never deliberately bring about the death of another person, even where that person requested it, because to do so is to compromise good medicine. It has implications not just for that person but for all the other people.

I find it very easy to understand, if a person decides, unusually, to refuse medical care, that other people do not necessarily follow, because it is not seen as a normal thing to do. The whole point is that if you legalise euthanasia, you make it a more normal thing and impact how people see it. It is for another day, Senator Ruane, and I do not call it care, but I will happily show the Senator how the change in legislation following the 2018 referendum has led to vastly expanded numbers of people making decisions. I think there is clear evidence that when you change the law on how the State sees a human life, it changes people's behaviour. I would not have thought that would be hard to argue.

I meant to ask if the witnesses can say more about those other jurisdictions.

I think the claim has been made that there is palliative care in Belgium and the Netherlands and I heard it said that the money has not improved. I would argue that it is very hard to draw any lessons from New Zealand and Australia because it is also very new, but does Professor Watson have any comment on what is happening in those jurisdictions?

I have heard it claimed that it is the middle class and the well-off who will make this decision, and yet when we think about who might be affected by their decisions it is the vulnerable and maybe those who cannot advocate for themselves so effectively. Over time, what cohorts within society do Professor Watson see as being most affected by this?

Professor Max Watson

Just very quickly, in relation to Senator Mullen's first question, we have seen a deterioration in countries which have introduced assisted dying. Australia has decreased end-of-life care. It has gone down two places in the league table, from fourth. The Netherlands has gone down. New Zealand has gone down eight places since 2015. Switzerland has actually improved. Canada has gone down 11 places in terms of overall indices. Belgium has gone down 21 places.

It is not universal in all countries but there is a trend that where assisted dying has come in, the quality of end-of-life care, as previously assessed, has decreased.

Senator Rónán Mullen

Why does it seem to be the case that the problem is much worse where there is euthanasia on the table, with the medical profession involved, the numbers seem to be much higher? They have already increased a lot in places like Oregon and so on, but it does seem to be the case that euthanasia takes it much further. Why does Professor Watson think that is the case? Is it because if doctors are seen to be involved and the feeling is that we can trust doctors?

Professor Max Watson

It is turning it into a treatment. It becomes a treatment for a problem. There is something about giving an injection to people that makes it feel safer. It is going for a procedure as opposed to the more uncertain taking of medicines and waiting for them to have their effect. I am not sure what others think.

Dr. Matthew Doré

It is also a lot easier to receive an injection than to swallow a large amount of fluid. There is a complication rate of about 15% in an old paper from the 1990s where people took assisted suicide by swallowing it rather than a euthanasia injection. They vomited and there were prolonged deaths. In some cases it was very unclear what happened. I agree with Professor Watson that an injection is an easier treatment.

It is interesting that Senator Mullen referred to Oregon, which has only assisted suicide, as being less severe. I do not understand this but the normal assisted suicide rate has gone up by a third in Oregon and in the other places it certainly has not gone down, it has stayed the same. I do not know how to get my head around those.

Senator Rónán Mullen

Some might say that correlation is not causality in that case, so it is hard to know what exactly is going on.

Dr. Matthew Doré

I take that. I know Senator Mullen does not want to conflate, but I cannot help but conflate because I have patients who tell me I am a nuisance. One of the most commonly written sentence in suicide letters is, "You're better off without me." According to their own statistics, 48% are a burden. That is nearly half who are saying they feel a burden to family and friends, so how can we ignore that?

Deputy Gino Kenny

Dr. Doré is being very selective about some of the reasons people choose to avail of assisted dying. Being a burden is just one of those. There are lots of other reasons.

Senator Rónán Mullen

The figure is up to 53% in the last statistics.

Senator Lynn Ruane

It is because the person asked, it is not the reason for seeking it.

Senator Rónán Mullen

It is an issue of concern in that number of people's lives and it is on the up.

Senator Lynn Ruane

Of course, but what I am saying is that people are not given assisted suicide based on the fact that they arrive and say they are a burden.

Senator Rónán Mullen

Nobody is suggesting that. There are always many reasons but it is very problematic that such a large number of people feel they are a burden.

Senator Lynn Ruane

Of course.

Senator Rónán Mullen

It cannot be divorced from the availability of a solution.

Dr. Matthew Doré

Those that die alone is 49.6%. In my head, that is not a good death, but who am I to judge.

An Cathaoirleach

I thank Dr. Doré. On behalf of members I would like to take this opportunity-----

Deputy Gino Kenny

Could I ask one more question?

An Cathaoirleach

Yes, Deputy Kenny can.

Deputy Gino Kenny

This might be relevant to the committee. I want to ask about the administration of morphine in palliative care. Is its use widespread?

Dr. Regina McQuillan

The administration of strong opioids is very widespread because very often we are treating people with difficult pain. We use morphine and other drugs of the same family for pain, breathlessness and coughs. Those are the reasons. We do not use morphine for sedation. It is not a good drug for sedation. When I say that there have been some advances over my years of working hard in medicine, some of that has got to do with a better understanding of other drugs in the morphine class, which are better than morphine. For instance, oxycodone is probably better. It is twice as strong as morphine but better in some patients. There are also drugs like hydromorphone, which is a very old drug, that is better for people with renal failure. There is a better understanding of some of these drugs.

Some of the people who we will walk by on the street when we go back to our cars this evening are on morphine. People who are on morphine, in receipt of palliative care, go to work, mind the children and do all their usual things. Morphine is a good drug in cancer pain but the benefit is not as clear in chronic, benign pain. There is a major problem with how to manage chronic benign pain – "benign" meaning non-cancer pain. That is a major problem worldwide. Morphine is used a lot in palliative care but it is not the only opioid. Very often I am involved in reducing people's doses of opioids as they get sicker because if their kidneys or liver are failing we find that they need less drug rather than more. What we are trying to do is see if people are less well what type of morphine side effects they are having and if we need to reduce the dose of morphine or switch to another drug in the same family.

Deputy Gino Kenny

Are most drugs such as morphine for general pain management?

Dr. Regina McQuillan

Morphine could be for pain, breathlessness or a cough. Those are the reasons we tend to use morphine and other opioids in the same family.

Deputy Gino Kenny

Will the vast majority of people in palliative care be administered some sort of drug for pain management?

Dr. Regina McQuillan

The majority will be but not everybody. It is not universal.

An Cathaoirleach

I thank Dr. McQuillan.

Deputy Gino Kenny

I thank her also.

An Cathaoirleach

I thank very sincerely on behalf of the members, the secretariat and myself, Dr. Regina McQuillan, Dr. Faith Cranfield, Professor Max Watson and Dr. Matthew Doré, for coming to the meeting today and engaging with the committee. All of the members would agree that it has been very informative, engaging and very helpful in the important work that we have to do over the coming months to try to come to a conclusion on this most serious matter.

The joint committee adjourned at 12.53 p.m. until 10.30 a.m. on Tuesday, 16 January 2024.