Joint Committee on Assisted Dying debate -
Tuesday, 30 Jan 2024

System for Assisted Dying and Alternative Policies: Discussion

An Cathaoirleach

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 respect of participation online from outside the parliamentary precincts. Members should be mindful of this when contributing.

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

We warmly welcome Professor Nancy Preston, professor of supportive and palliative care at the University of Lancaster, Professor Roderick MacLeod, health professor of palliative care at the Dunedin School of Medicine, Professor Ben White, professor of end-of-life law and regulation at the Australian Centre for Health Law Research, Dr. Frank Beck Lassen, member of the Danish Council of Ethics, and Professor Merete Nordentoft, member of the Danish Council of Ethics and professor of psychiatry at the University of Copenhagen. We are very grateful to them for attending and sharing their knowledge with the committee. We are also very grateful that Professor MacLeod and Professor White can join us at a time that may not be convenient for them.

The format of the meeting is that members will ask questions after all the witnesses have given their opening statements. A member can ask a question of an individual or address a question to witnesses more generally. I ask that the witnesses keep their opening statements to under five minutes. As they can imagine, we have to keep this meeting to order.

I invite Professor Preston to give her opening statement.

Professor Nancy Preston

I thank the committee for the invitation. I conduct research about palliative care and assisted dying, but I take a neutral stance on the debate. Much of the debate is about whether assisted dying is right or wrong, needed or not, but, as the committee makes clear, it is also crucial to think about how provision for assisted dying might operate. There is a natural assumption by the public that assisted dying will be integrated into healthcare systems. However, from our research in the Netherlands, the US and Switzerland, where this is permitted, we know this is rarely the case, with most assisted deaths occurring at home. This is in part because institutions do not want to be associated with the practice for fear of damaging trust with their patients. Even in the US, where the Oregon system is often championed as the preferred model, hospices with religious affiliations will not allow assisted dying on their premises and will not allow staff to discuss it. Even where patients have applied for and been granted an assisted death in the US, they may find the medication prohibitively expensive because elements of the pharmaceutical industry may fear being associated with it.

There is also a potential impact on healthcare staff themselves who assist with assisted death. As one doctor who supported and helped patients gain an assisted death in the Netherlands said, it is stressful to kill somebody. The doctor managed this by limiting the number of cases they did each year. Other doctors talked about moving away from areas where they would be asked to assist, such as palliative or end-of-life care. This is challenging for healthcare systems if healthcare workers choose other specialities for fear of being asked. For others, the toll was less severe.

Often, the acts of physicians are carried out by volunteer doctors from right-to-die associations. These are people who have chosen to support assisted death and who feel less dissonance about performing the act. While they do not have a long-standing relationship with the patient and family, they are able to assist in the death. Because of the reluctance of healthcare staff to be involved in assisted deaths, it can be difficult for patients and families to navigate the system and to work out how they will get an assisted death. Even if a doctor supports assisted dying, that does not always mean they will be willing to assist and, indeed, most do not. In some of our research, doctors told us they actively discouraged patients from having an assisted death and openly admitted to keeping the decision-making procedure going longer in order that an assisted death would no longer be required.

The impact of trying and potentially failing to navigate this system is made worse because this is a relatively secret act. Patients seem to ruminate on the decision and choose to share their desire for an assisted death with just one or two people.

These people, in turn, must maintain secrecy, which makes them feel isolated. However, our research suggests that all family members seem to be pleased that they respected the decision of their loved one, even if they were happy to have supported them naturally. For the patient to be in control at a time of life when they are losing control is of utmost importance. The secrecy means that not all family members know about the death until afterwards, and some people find that very difficult. It is hard to find these people to interview, but they do express unhappiness. These conversations seem to be had on a need-to-know basis.

To help overcome some of these issues, we have proposed, as have others, a system to operate assisted death outside of the healthcare system. That is not to say we should pass a law; rather, it is saying that it is perhaps the safest way if the Oireachtas chooses to pass a law. The panel could make a judgment based on medical reports. This could include a palliative care consultation where alternatives have been discussed. All applications would be recorded in advance, which would act as a safeguard for subsequent monitoring. In most other countries, any assessment of legality is only after the death which is too late. Austria introduced a similar system last year. Switzerland's volunteer system is pretty similar. There are other options.

Overall, keeping assisted dying practices outside of healthcare could potentially smooth the process for patients and families, but it also protects healthcare workers. It would allow for greater scrutiny before and after the death and, importantly, this means all cases can be assessed to see if due process was followed. I thank the committee.

An Cathaoirleach

I invite Professor MacLeod to give his opening presentation.

Professor Roderick MacLeod

I thank the committee for inviting me to speak. At the outset, I need to point out that I am no longer at the University of Dunedin and have not been with Dunedin School of Medicine since 2005. I am now with the University of Auckland.

I have worked as a specialist physician in hospice and palliative care since 1989 and have held professorial appointments in palliative care in New Zealand and Australia. Euthanasia, or assisted dying in any form, is antithetical to the purpose and practice of medicine and has the potential to put pressure on vulnerable people to end their lives, to undermine palliative care services and to change society’s broader perceptions about suicide.

Requests for hastened death are not uncommon but are rarely sustained once effective palliative care is provided. The most common factors precipitating such requests are psychological in nature. It can be difficult even for psychiatrists to identify depression in those approaching death. Major concern has been expressed about the ability of clinicians to determine who is psychologically suitable for, that is, competent to request assisted death services.

Legislated safeguards cannot detect coercion behind closed doors. Many of the suggested safeguards in other jurisdictions' legislation are not able to detect psychological pressure from family members and others with vested interests. This is particularly concerning for potentially vulnerable groups such as older people, given that more than one in ten older people experiences psychological abuse in any given year.

By assisting people to end their lives, our society would be sending the message that some lives are not worth living. Such a change in attitude could place pressure on vulnerable people including older people, those living with dementia and those with disabilities. The existing and proposed safeguards in legislation in some countries - New Zealand is a good example - to protect people with mental disorders and impaired decision-making capacity require referral for assessment from a psychiatrist or other specialist. In jurisdictions where this requirement is optional, it is rarely used. Where it is mandatory, significant concerns remain about the assessment of capacity and the presence of mental illness in people with a terminal illness.

The sense of hopelessness that accompanies many towards the end of life can be limited. Hope can be restored once its absence is addressed.

This requires effective and compassionate communication by clinicians over time to ensure all aspects of hope are addressed. Palliative care in many countries around the world is widely available but not always understood by the public and the professions alike. Education on palliative care is inadequate in many universities considering the importance of this aspect of medical care. All doctors will have to care for people near the end of life, particularly in their early years of practice, so adequate and effective education is needed before graduation and subsequently.

The effect on health professionals of legalising euthanasia is underestimated by many and, sadly, rarely discussed. The effects can seriously and adversely impact on individuals’ ability to continue to practice. In the Netherlands, it has been said that many physicians have found performing euthanasia to be a “drastic and sometimes even traumatic event”. In other jurisdictions doctors who have participated in physician-assisted suicide and euthanasia have reported that this subsequently affected their ability to practice medicine.

International experience shows that the circumstances under which assisted dying can take place are often extended over time and the practice can also be open to abuse. Along with the majority of my colleagues in palliative medicine, those indeed who have the most experience of caring for those approaching the end of their lives, I remain strongly opposed to legalising euthanasia or assisted dying in any form. Sadly, New Zealand has recently passed a law allowing that to take place and the committee may want to ask me some questions about that later on. I thank the committee.

An Cathaoirleach

I thank Professor MacLeod and I now invite Professor Ben White to give his opening statement, please.

Professor Ben White

I thank the committee very much for the opportunity to speak to its members tonight. I am professor of end-of-life law and regulation in the Australian Centre for Health Law Research at the Queensland University of Technology in Brisbane (Meanjin), Australia. I am making this opening statement on behalf of my colleague, Professor Lindy Willmott, as we have been researching the law, policy and practice of voluntary assisted dying together for over 20 years. More information about our work can be found at the end of this statement.

We support law reform to allow voluntary assisted dying in limited circumstances. It is possible to design a safe and effective voluntary assisted dying system that respects autonomy and shows compassion for terminally ill patients who are suffering and want to die, while at the same time robustly protecting the vulnerable in society. Reaching this view required a process of deliberation. First, we reflected on the ethical values that we thought should underpin law in this area: the values of life, autonomy, freedom of conscience, equality, the rule of law, protecting the vulnerable, reducing human suffering, and safe and high-quality care. We balanced and weighed these values and concluded that the ethical case for lawful voluntary assisted dying was very strong, provided it can be done safely.

Whether voluntary assisted dying can be safe involves a shift from ethics to facts and importantly, consideration of the evidence. We reviewed the evidence, including two decades of experience in places overseas which showed, for example, that vulnerable individuals are not more likely to use voluntary assisted dying, and also that voluntary assisted dying can be regulated safely.

This was the view we reached prior to voluntary assisted dying becoming lawful in Australia. Since then, all six Australian states, after careful reviews by committees like this one, and extensive debate in all six parliaments, decided that it was safe to have voluntary assisted dying. So we can now add the experience in Australia to that evidence After reviewing the experience of four years in Victoria, two years in Western Australia and approximately one year in Queensland, South Australia and Tasmania - the New South Wales law has only recently started - our view remains that voluntary assisted dying can be safe, and that this is the case in these systems. The Australian evidence we draw on for this includes the reports of the oversight bodies in these states. It also includes our research with team members across the states of Victoria, Western Australia and Queensland interviewing over 140 people: people seeking voluntary assisted dying, their family members, doctors, nurses, pharmacists, health administrators, medical college members, oversight board members, government officials and others. A key finding from this research is that the voluntary assisted dying systems are operating safely. In fact, a challenge is that the many of the safeguards in these systems have made accessing voluntary assisted dying very difficult for some patients.

I conclude with some reflections on research we have done on law reform deliberations about voluntary assisted dying.

In this research, we make the case for such deliberations to be evidence based and, in particular, that the evidence which lawmakers use be reliable. I mentioned that our own process of deliberation about voluntary assisted dying involved first thinking about the ethical issues and then about the facts or evidence. People can and do reasonably have different views about the ethics and the rights and wrongs of voluntary assisted dying. This is informed by a person’s values. We transparently stated the values that we considered in our deliberations but arguments about facts are different. These are claims about whether or not something is happening in practice. For example, are vulnerable groups in society more likely than others to seek voluntary assisted dying? This question, because it is about facts, is not settled by debating values but rather by looking at the evidence.

A key challenge for this committee is that it has received, and will continue to receive, a lot of information that will conflict. Voluntary assisted dying is said by some to be safe and by others to be dangerous. We make the following point about evidence. Only reliable, trustworthy, high-quality evidence will accurately show what is happening in practice. Drawing on established ways that science uses to evaluate evidence, a reliability pyramid has been proposed by a colleague, Professor Jocelyn Downie, which is figure 1 at the end of this statement. At the bottom of that pyramid are anecdotal claims or opinions, including what people think, what people claim to have seen, or what they believe based on their experience or views. These claims are of limited reliability and are not a safe basis upon which to make laws. An example towards the top of that pyramid is a systematic review, published in a top international journal and subjected to peer review, which analyses all the research on a topic and carefully and critically evaluates it. This is reliable evidence that lawmakers can safely act upon.

I note that this point about evidence is not an argument in favour of or against voluntary assisted dying. It is rather an argument that lawmakers, when considering this important and complex topic, should be supported in their deliberations by high-quality, reliable evidence.

An Cathaoirleach

I invite Dr. Beck Lassen to give his opening statement.

Dr. Frank Beck Lassen

I am sorry to disappoint everyone. I thank the Chair but I am only here to assist Professor Nordentoft. She will give the opening statement on behalf of the Danish Council of Ethics.

Professor Merete Nordentoft

I am professor of psychiatry at the University of Copenhagen and a member of the Danish Council of Ethics. The council is appointed by the Danish Parliament and consists of 17 experts from different professional backgrounds. It provides advice to the parliament on ethical questions.

I will give a little of the context in Denmark. According to Danish legislation, doctors are not obliged to give life-prolonging treatment, including nutrition, against a patient's will. There are exceptions, namely, in cases involving psychosis and severe anorexia nervosa. Apart from those exceptions, however, doctors are not obliged to give life-prolonging treatment against a patient's will. Life-shortening medication is allowed when it is used to ease pain, nausea and other unwanted consequences of illness in order to help the patient, even in cases where a side-effect of the medication is shortening of the patient's life. For instance, this could be the case with opiates. These are the elements of palliative care that can be provided, even if they are life-shortening.

The Danish Council of Ethics announced its recommendations in October 2023. First, we reviewed different models for assisted dying as implemented in Oregon and the Netherlands. We were specific about those examples. It is very important to study different models as there are huge differences in the detail of the models applied.

In the Netherlands, which allows euthanasia and has no requirement for terminal illness and where 5% of the deaths are accounted for by assisted dying, the number of people who die through assisted dying is ten times greater than in Oregon, which allows only assisted suicide and requires the presence of a terminal illness.

I shall now refer to the council's recommendations. The decision to request assisted dying is a serious one. When carried out, it is irreversible, contrary to a suicide attempt. In many cases, people regret suicide attempts and live afterwards. An important point is that the person will lose the possibility to change his or her mind. In Oregon, for instance, one third of the patients provided with medication for suicide did not use it. There are, of course, examples of patients who describe their lives as full of suffering and hopelessness, and who appear clear and well-considered, who are often discussed in the general debate. However, even in those cases, the wish to die fluctuates. On top of that, there is a large number of borderline cases where people's suffering and ability to make decisions are difficult to determine accurately and may vary over time. If assisted dying is to be allowed, it requires a regulation that can handle not only such clear and seemingly unambiguous cases but also the many more borderline cases.

As a consequence of these considerations, a majority of 16 of the council's 17 members recommend not legalising assisted dying in Denmark. As justification for this recommendation, the majority of the council has emphasised one or more of the following considerations. The members recognise that there are cases involving a death wish that is understandable but at the same time they will point out that even people with a long-term wish to die experience moments of ambivalence, and it is possible that they will change their minds.

We also argue that assisted dying may cause unacceptable changes to basic norms for society and healthcare. The very existence of an offer of assisted dying will decisively change our ideas about old age, the coming of death, living with disability, quality of life and what it means to take others into account. If assisted dying becomes an option, there is a great risk that it will become an expectation more than a right. There is a risk that it will even be experienced as a duty. That is one of our considerations. All of us agree that optimising palliative care should be an important part of what we should do in this context. We talk about assisted living instead of assisted dying. I will be happy to answer questions.

An Cathaoirleach

I thank the professor.

Senator Rónán Mullen

I thank all our guests, whose locations are in different time zones, for contributing on this.

My first question is for Dr. MacLeod, who is from New Zealand. We have heard much in recent weeks from people who say that if we look to Australia, New Zealand and Oregon, we see mainly assisted dying, not the runaway train seen in the Netherlands, Canada, Belgium and so on. New Zealand and Australia, unlike Oregon, legislated for this issue only very recently. Is Dr. MacLeod as inclined to be as reassuring about the New Zealand experience as some of the contributors at last week's meeting?

Professor Roderick MacLeod

No, I am not at the moment.

That may be a reflection of the fact that it is relatively new legislation which only came into force in November 2021. The other aspect is that relatively few medical practitioners are prepared to take on the role of helping people to have assisted dying. The difficulty I have with the New Zealand legislation, as well as the reporting in respect of the legislation and assisted deaths, is that there is not enough publicly available information to know exactly how the system is working. We get the bare minimum of information despite several of us asking the Ministry of Health if it would be prepared to collect more accurate data in order that, in line with Professor White's statements, we can build evidence to say this is or is not working well. It is currently relatively secretive. We do not know, for example-----

Senator Rónán Mullen

I apologise for interrupting but I am caught for time. Does Professor MacLeod have any comment on the Australian situation? Has he looked beyond the New Zealand experience?

Professor Roderick MacLeod

Yes. What Professor White is saying is correct, in that the states are embracing it. I will not say they are doing so with enthusiasm, but it is being undertaken in those six states. What I hear from palliative medicine colleagues in Australia is that it is not quite as rosy as the reporting indicates, but that is only anecdotal. Until more evidence is provided in the public arena, we will not really know. Obviously, New Zealand is looking at Australia to see how it is going there.

Senator Rónán Mullen

Professor Preston referenced the idea of taking it out of the healthcare system entirely, if it is to be done. A recurring feature in our discussions is that many doctors and other healthcare professionals are disturbed by the experience of being involved. They think it compromises good palliative care and worry about the burdening of other people, as well as the changing of the doctor-patient relationship and all that. I refer to it being left to doctors who experience less dissonance or no dissonance, to use Professor Preston's term. Should we be concerned about the doctors who do not experience dissonance in the context of doing this?

Professor Roderick MacLeod

We should. Not very long ago, a doctor from Canada visited New Zealand. That doctor's only role in medicine seemed to be assisting people to die. I do not believe that is appropriate. It is very challenging for physicians to take on this role. The challenge is that the physician involved should know the person very well, have a relationship with the person for many years and know how the person responds to illness and what the family is like. That is not required to be the case in New Zealand. There can be an assessing medical practitioner who only meets the patient on the day and then an independent medical practitioner who may not have met the patient before. If this is to be contained within medical practice, the challenge for medicine is how it is to be done. I do not see why it should not be removed from medicine. As I stated, it is antithetical to good practice.

Senator Rónán Mullen

I thank Professor MacLeod. I agree with everything Professor White said in respect of moving from ethical considerations of the right and wrong of it to the factual analysis of the impact of things and the importance of a fully evidence-based approach.

Notwithstanding my agreement with Professor White, I note he was commissioned by the state government of Victoria, Western Australia to design and deliver the legislatively mandated training for practitioners who wish to provide voluntary assisted dying. Some people might consider that to mean he has skin in the game. I suppose there are very few people who do not have an opinion one way or the other. However, what I found surprising was where he said he had reviewed the evidence, including two decades of experience in places overseas, which show that vulnerable individuals are not more likely to use voluntary assisted dying and that it can be regulated safely. I consider the evidence of such people as Theo Boer from the Netherlands who was originally involved in the assessment of euthanasia and has pulled back because of concerns about what he sees happening. Can Professor White credibly claim what he claims, when we see what has happened in Canada, that is the proposed extension - although there is at least a temporary pullback or pause - of access to medically assisted dying on grounds of mental illness? We will have to see where that goes. Where the waiting time for medically assisted dying is shorter than for palliative care, where we hear stories of and read reports about very vulnerable people finding themselves being offered assisted dying instead of the healthcare support they need, how can the claim made by Professor White be credible, that a full review of the evidence of two decades showed it can be regulated safely?

Professor Ben White

I will begin with the point the Senator made about transparency in the approach I take. I outlined the values I think are important in the debate and I also made clear to the committee my involvement and the work I have done. As the Senator correctly said, everyone has a position on this, including everyone here today, and I have tried to be transparent about that.

On the topic of whether the vulnerable are more likely to use voluntary assisted dying, as I mentioned, I followed the evidence on it. For example, a paper published in 2016 by a group of authors who have different views on voluntary assisted dying reviewed all the evidence in Europe, Canada and the US and found that vulnerable people were not more likely to use voluntary assisted dying. That paper, which analysed all the evidence available at the time, was published in an internationally recognised peer reviewed journal. That was part of the evidence I used to reach that conclusion.

Senator Rónán Mullen

Has Professor White then come to a view that there is nothing wrong with what is happening in Canada?

Professor Ben White

I will confine my comments to the Australian position. I understand the committee has spoken to colleagues in Canada and they are best placed to give a view on that. I mentioned the pyramid of reliability of evidence earlier. The Senator mentioned stories, reports and anecdotes. It is important that when they are put forward they are carefully evaluated in light of the reliability that should be attached to them.

Senator Rónán Mullen

Can I ask-----

An Cathaoirleach

No. Deputy Emer Higgins please.

Senator Rónán Mullen

That is fine.

Deputy Emer Higgins

I thank all the witnesses for joining us online today. I appreciate they are Zooming in from different time zones. We appreciate their expertise in this field, including their research. It is important that we have an idea of the international landscape we are operating in while we navigate our way through this complex topic. Two themes came up in today's opening statements that I would like to explore a little. Senator Mullen already touched on the first, namely Professor Preston's idea of a panel, which we have discussed a little at this committee. The second is Professor White's idea about ethics versus facts and values versus evidence, which is relevant to today's debate.

I like the panel perspective because it eliminates, as Professor McLeod referred to, the trauma sometimes involved from a practitioner's perspective. It would remove conscientious objection as a proactive thing a medic has to declare and would provide consistency around decision making. I would like to hear the witnesses' views from a consistency and decision-making perspective, whether that in itself would be a natural increase in safeguards and would remove the risk of a slippery slope.

Ethics versus facts and values versus evidence are issues I struggle with in this committee.

On Second Stage of this Bill, which established this committee, I voted in favour based on my ethics, my values and my desire for freedom of choice and freedom of bodily autonomy. However, on Committee Stage, it is all about facts and evidence. Over the past number of months we have had very conflicting evidence. We have had anecdotal evidence, which is often a good sound bite but which does not deliver the depth of what research provides, which is not necessarily as sexy but it is important for us as a committee to have a grasp of.

Professor White has done 20 years of research in this field. I would like to hear from all the panelists around the safeguards of the panel. However, could Professor White summarise 20 years, as easy as it may be in 90 seconds or so, to give us those highlights as to what he has gleaned and what we as a committee need to take as takeaways from that research?

Professor Ben White

My focus probably would be on Australia but I guess, without wider context, it is possible to have safe voluntary assisted dying. I am following the reliable evidence that is out there on that.

In Australia, we have a totally constrained and focused model and the research and, indeed, the oversight reports show the system is operating as intended. That would be the short version.

I probably would add that if Ireland is thinking about the Australian model, I guess it should have in mind the issue of accessibility as well. In Australia, there was so much focus on making sure the law was safe that sometimes the ability for the law to be useable and navigable by the patient was not given perhaps enough attention. That is perhaps one thing for Ireland to consider.

I should say as well that our model in Australia situates voluntary assisted dying within healthcare. I am conscious of allowing others to speak, so I will not say more on that, but I am happy to speak to that. That has been a positive for Australia but I recognise there are different models internationally which function.

Professor Nancy Preston

On terms of evidence, the evidence is conflicting. I presented things one could take and use on either side of the argument. It is not clear-cut. When it comes to safety, any system that upfront gives an assessment means, one has more chance of being able to follow the patients through a legal system.

In response to the dissonance of the doctors, if one includes a palliative care assessment in that as well, palliative care teams on the whole are against assisted dying, but not completely. If one had a palliative care assessment, it would give one that balance and perhaps also have that contact Dr. MacLeod was looking for. However, look at your healthcare system. How often do you see the same doctor? Do you have long-term relationships with medicine anymore? Panels might be the safest option. It might feel very uncomfortable and clinical, but it might provide more safeguards than you think.

With regard to ethics and values, this absolutely comes down to that. It is very hard for it not to be. It is very hard to decide this just on evidence. If one has a religious belief, that will take over any view on the facts and the numbers. It will be very hard to change people's views one way or the other. All we can do is present evidence, but ultimately it is down to the committee to think about where it goes with its ethics and its values.

Professor Merete Nordentoft

I just wanted to follow up on this with evidence. My main interest is suicide prevention and I have been working with suicide prevention for many years. One very well-established fact is that the people who attempt suicide often change their mind. Some do so during a very short timeframe, within maybe 24 hours. If we look at long-term follow-up, what we can see is that 10% die from suicide while the rest die from something else. This speaks to the fact that a lot of people will change their mind if they have the possibility. In that case, assisted dying removes the possibility of changing your mind. Of course, many suicide attempts are for the patient perceived as lethal but then, to their surprise or thanks to medical treatment, they wake up and often change their mind in a short time or later.

Additionally, I would like to mention that many patients change the threshold for perceiving a worthy life during palliative care.

Deputy Emer Higgins

I have a question on that. Professor Nordentoft touched on it in her opening statement. Have surveys been done on that or is that anecdotal evidence? Is there data to back that up? It is quite an interesting comment and I am sure it is the case, all right.

Professor Merete Nordentoft

Yes. I think there is some evidence that shows that people who are, for instance, treated for cancer will accept much more pain than before. That kind of evidence is possible to get.

Deputy Emer Higgins

If the professor could send that evidence and the report on to the committee, it would be very helpful.

Deputy Patrick Costello

I thank the witnesses. I want to ask Professor Preston a couple of questions. She has quoted a lot of research and seems to have done a lot of research around this across the various jurisdictions. One of the things that is frequently presented to this committee is the idea that palliative care and assisted dying is an either-or, and that they are mutually exclusive instead of us being able to provide both. In Professor Preston's experience, from researching this over the years, is there a trade-off there? She talked about the interaction between the teams. I ask her to comment on her experience of that and that trade-off, and the question of whether they are mutually exclusive.

One of the other things that is spoken a lot about by some people at this committee is the idea of the slippery slope, which again Professor Preston addressed in some of her ethics research. I refer to the idea of the social impacts, the assumption that allowing this will undermine the very idea of life itself, or that it will create a perception that some lives are not worth living. Can Professor Preston talk to us about that in terms of her research? What research has been done around those wider social impacts, not just in terms of the process and models of assisted dying?

There has been a lot of discussion around reporting systems and the need for data. I ask Professor Preston to speak to the differences between and her experiences with reporting systems, including which is better and which provides greater transparency and oversight.

On the secrecy and suffering of families, Professor Nordentoft noted in her presentation that the most important feature is the model chosen in relation to assisted dying. I ask her to speak to us a bit more about what works best for families, based on her research.

Professor Nancy Preston

I do not think palliative care and assisted dying are mutually exclusive. For the research we conducted in Switzerland and the Netherlands, all the bereaved families we interviewed had palliative care input. The people were receiving palliative care at the time they chose the assisted death. It is an uncomfortable relationship for some, and that is where you get more people on the conscientious objection side, but I do not think they are mutually exclusive. It can be difficult for palliative care doctors who are willing to assist a death. They have given anecdotal evidence that they are shunned by their peers because they have become involved. I do not think they are mutually exclusive. Looking at the Benelux countries, their statements on assisted dying are not the same as the international palliative care statements which are completely against it. I think they can operate together, but there will be discomfort.

On the second point the Deputy made about the social impact, what we found really interesting was that it is a taboo. Even within healthcare, everybody we interviewed said it is never a normal death, but a death that stays with you forever. That is just the healthcare workers. That is the impact on them. On the impact on society, in some ways I guess it was there to say it could happen, but in our interviews they just did not talk about it.

It remained a secret, which made it quite difficult to cope with in some ways. However, when we looked at the interviewees' overall bereavement experience and reviewed the literature, it was still pretty good. They really felt they had honoured the person they were supporting. We probably do not know enough about the wider societal impacts. It is not an area we have gone further into.

On the Deputy's question on risk, we already know that, during the Covid pandemic, people with a learning disability or any other sort of disability were more likely to die. The healthcare system makes judgments that are not always in your favour. That is another reason not to want this on a busy ward with lots of beds that are needed and busy clinicians making decisions. The risk is high there. We had a liveable care pathway in the UK that went very wrong. There was nothing really wrong with the pathway but it was not implemented well and there is a fear that, if you implement this badly in mainstream healthcare, you will raise risks. However, there is no evidence to say that it will. The overall numbers in all countries have stayed low but they are particularly low where it is a case of assisted death rather than euthanasia. Have I missed anything?

Deputy Patrick Costello

No but I see that Professor White has his hand up. If he would like to come in on those questions, I will come to him next.

Professor Ben White

I will briefly address the comment about wider societal impacts. These are really significant claims and they are factual, that is, claims about what is and is not so. It is an area in which following the evidence becomes really important. Claims that legalising assisted dying will lead to a duty to die and fundamentally change society and similar claims are very significant and factual. I know that Professor Preston confined her comments to conversations with healthcare professionals and families and was not suggesting that there was wider societal evidence. I am not aware of any such evidence either. As far as that point is concerned, I do not believe there is evidence to support those claims. I believe they rest in the category of anecdote, opinion and belief without evidence to support them.

Deputy Robert Troy

I thank all our contributors this morning. We have spent the last number of months listening to eminent academics, practitioners and advocates. There have been many contradictions and all have referred to evidence to support their own position. We are charged with drilling down into that and coming forward with a recommendation for our own country. Even today, Professor White has spoken about robust protections being in place to protect the vulnerable in society but Professor MacLeod has spoken about an inability to put in legislative safeguards to protect against coercion behind closed doors. Those two positions are very much contradictory as regards protecting the vulnerable. I ask both to comment on that.

Professor White spoke about research and interviewing 140 people across three states. How reflective is that research? It seems like a small number of people in a well-populated area. What are Professor White's views on that?

Professor MacLeod said that "Requests for hastened death are not uncommon but are rarely sustained once effective palliative care is provided." Can he quantify that? Is that just anecdotal evidence or does he have hard facts to back it up?

In reply to a colleague, Professor White said that he preferred to keep his comments to Australia and not to speak to the Canadian experience. We have to look at all experiences. That is the purpose of the committee's deliberations. The Canadian experience leads me to think that the robust safeguards initially introduced have been weakened over a period of time to allow a greater number of people to avail of the service. Does he foresee that happening in Australia?

Finally, I am not sure who spoke about palliative care because I did not take note of it. I think it was Professor MacLeod who said it is not widely understood either by the public or professionals. What is being done to ensure that it is better understood in New Zealand?

Professor Roderick MacLeod

I will respond to the question about coercion. Doctors are not trained to detect coercion. In the New Zealand legislation, all the assessing doctor has to do is to ask if the person made the decision of their own free will. Therefore, there is nothing to suggest that there is any way of detecting coercion. Similarly, I wanted to say earlier that of the approximately 300 people who sought assisted dying in the first year of our legislation, only three people were referred to a psychiatrist. Presumably the others were assumed to have competence. Yet, internationally recognised data suggests that at least 25% of people who are approaching the end of their life have a depressive illness. Therefore, either these depressive illnesses were not recognised or they were recognised and were ignored and it was all seen as part of the request for assisted dying.

In response to the Deputy’s question about requests for assisted deaths, as I said at the start, I have been practising palliative medicine since 1989. I am not a clinician anymore, but at least every month and sometimes every week, a person would say to me that they did not want to live like this, they had enough and they wanted out. That was before the palliative care team was involved. I can put my hand on my heart and say that only one person in those 30-odd years persisted in his desire for a hastened death, even though it was not legal at that time in New Zealand. Yet, even he said “Well, it will not be today, but it might be tomorrow”.

I know Professor White is very hot on the evidence, but when Professor David Sackett wrote about evidence-based practice, there were two elements to it. One was the data and the other was practical wisdom. We must acknowledge that there is practical wisdom that goes with decades of clinical practice and it may be at odds with what the evidence is saying. I do not know if I have answered the Deputy’s questions.

An Cathaoirleach

Yes, that is fine. I call Professor White.

Professor Ben White

I will take some of those questions in turn. I will disclose the evidence I am relying on in concluding that voluntary assisted dying is safe in Australia. There are the oversight reports that the voluntary assisted dying review boards will produce, publish and make transparent in terms of their data. There is also the body of research that I mentioned before. The Deputy is correct in saying that 140 interviews across three states are obviously not a survey of population or a survey of experience. It is qualitative research. Those are very large numbers for qualitative studies, but at the same time, I would not purport to say that they are a population-level study in terms of the reliability pyramid. It is not at that level, but it is the most reliable evidence that we have to date in Australia.

On the Canadian experience and whether that is an issue or concern for Australia, our parliaments took a very long time to consider whether voluntary assisted dying laws should be allowed. There were 40 attempts across various states and territories before the first law was actually passed, putting aside the Northern Territory some decades ago. Parliament has control of where those boundaries lie. Each of the parliaments in Australia has chosen narrow, conservative models and that is the choice they have made. It is their choice as to whether they go down the same path as Canada, but there has been no intention, willingness or desire to do so.

There are mandatory reviews in the northern states. The Victorian one has started and has specifically said there will be no changes to the rule.

Deputy Robert Troy

May I ask Professor White about the mandatory review that was built in? After how many years was that-----

Professor Ben White

That varies by jurisdiction. In Western Australia, for example, it was two years; in Victoria, it was five years. It is an excellent thing to do because these are new laws and it ensures a focus on how they are operating.

An Cathaoirleach

I call Senator Mary Seery Kearney.

Senator Mary Seery Kearney

I thank all the witnesses. I am keenly aware that for some of them it is way past midnight at this point so I thank them for their participation.

Professor White refers to safety in a lot of what he says. For the purposes of our record and our discussion, it is important for us to begin by defining what safety means and what Professor White means by it because, depending on our various ethical perspectives, we may be interpreting safety as something completely different. We might start with that. I have a couple of other questions.

Professor Ben White

I thank the Senator for asking for that clarification. I should have provided it myself, so I thank her for raising that.

Senator Mary Seery Kearney

Not at all. It is no criticism. It is just for all of us to be on the same page.

Professor Ben White

By "safety" I mean that the safeguards and systems for reviewing the eligibility criteria ensure that only people who are eligible and meet those criteria are able to access voluntary assisted dying and that those who are not eligible are not able to access voluntary assisted dying. When I talk about the system operating safely, that is what I mean.

Senator Mary Seery Kearney

That brings me neatly to my consideration of safety from the perspective of our being before legislation or even before articulating a view back to our Parliament in our recommendations. The safety I consider involves things like the robustness of consent. There are other areas we are legislating for at the moment - surrogacy, for instance - and we look for counselling in advance for all parties involved, legal advice and the robustness of that. In the context of this conversation, however, we have heard that if there is a presumption of capacity, that needs to be safeguarded, yet we also need to safeguard to know that a person is freely making these decisions. That, to me, is an essential element of safety.

I am also considering other things. When we talk about societal claims, how will we test whether or not people's perceptions have changed? I am not convinced we can. We see that even in political polls. We have seen the evidence that people were unwilling to say during the 2016 election campaign in America that they would vote for President Trump. There was then a change in perception. I think, therefore, that people can misrepresent themselves in polls or their views can change depending on what is socially acceptable. I feel that across a lot of areas. How, then, would we ever really measure whether there had been changes in attitudes? That is where my concern lies. How do we look for that? How do we test it? When Professor White says there have not been changes, how does he know that with any level of certainty?

I am a little confused because we have previously had evidence before us that in the likes of the Netherlands and in other jurisdictions a disproportionately high number of older single women avail of assisted dying as an option in its various forms. There would therefore seem to be a trend of their being a vulnerable group, or do we even all have the same definition in our head when we talk about vulnerable groups?

There were a lot of questions there for whoever wishes to come in.

Professor Ben White

May I pick up on the consent issue the Senator raised? Maybe other witnesses can comment on the other issues. I would include that as part of eligibility criteria: making decisions with capacity, being informed and being able to make those decisions.

One of the things which is different about Australia is the mandatory requirement for all practitioners who are providing voluntary assisted dying to undertake state-approved training. There is specific training on consent and detection of coercion, among other things. In some of the interviews we have done with doctors, they have actually said the conversations they have had about voluntary assisted dying made them realise that, even though they had been practising as doctors for 20 years, they were not doing informed consent. They were just going through the motions, but having done this and really stepped through that deep decision-making process with their patients, a number of them said they now really understood informed consent.

Professor Roderick MacLeod

The Senator's points about public perception are very well made. Before New Zealand changed the law, as the committee probably knows, we had a referendum. People were asked whether they were in favour of euthanasia and assisted dying and a majority said "Yes". However, when people researched what they understood to be assisted dying and euthanasia, it was clear the majority had no idea. They thought that having morphine for pain relief or withdrawing ventilatory support was assisted dying, as well as a whole raft of other things. When people were made more aware of what assisted dying really was, the numbers in support of it came down, although that was not enough to change the way the people voted. They voted in a majority to change the law, but even some of the law makers I spoke to did not really understand the implications of what they were voting on, of what the rather thin safeguards, as I see it, in our legislation mean. Assisting medical practitioners are trained in detecting coercion and yet, when one speaks to geriatricians who have a lifetime of experience with family members coercing their patients, they find it very difficult. I do not think it is as simple as saying that practitioners have had some training so they know how to detect coercion and how to test capacity. Testing capacity is an astonishingly difficult thing to do. The courts are filled with families who are suggesting their loved ones did not have capacity when they wrote their will, for example, and that is very difficult to challenge.

I am just glad I do not have the committee's job of trying to create a law which is safe. I hear what Professor White says about the safety aspects, but I do not believe, from what I have read, that any jurisdiction has created legislation that is truly safe or that cannot be got around by one way or another.

Senator Annie Hoey

I thank the witnesses for their contributions, which have been really interesting. I will park my initial question for a moment and just follow on from what the previous respondent said, which is that there is currently no system that is fully safe. I invite our other guests to come in on this. If there is no system that is fully safe, does that mean no system can be devised that is safe or that we just do not go down this route? I am interested in the views of our other guests on this because this is what we grapple with all of the time. Do we touch this or do we not touch it? Can it be safe or can it not be safe? Not to make light of it but arguably one could say that in every system, there is always a way for something to be got around. Is it possible, with all of the information we have and given all of the systems that exist, to create a safe system?

If it is not possible to create a safe system should one proceed with this, given that there will always be a way around something?

Professor Merete Nordentoft

I have a comment to follow what Professor MacLeod said. In Denmark a majority of the population is in favour of euthanasia but, as has been said, part of this is because people are not aware that patients are not forced to accept life-prolonging treatment. There is also the fact that doctors can provide medication to ease pain even when it shortens life. We have not expanded palliative care fully. I believe this will remove a lot of the anxiety associated with the population's attitude to this matter. Of course this is anecdotal but it is our perception that a lot of people who are in favour of assisted dying are not aware that doctors can provide life-shortening medication or that people are not forced to accept life-prolonging medication or treatment.

Professor Nancy Preston

My question is on whether the current system is safe and I am not arguing either way. I am just saying that we know assisted deaths are occurring at present and doctors are doing them. Surveys in New Zealand have shown they were happening before the legislation. One of the big drives in the Netherlands was that they were already happening. Legislation has not made it completely safe but it should be made as safe as possible. What is the best possible system? There could be an upfront system with more of a panel and bigger judgment from palliative care and other competencies. Bring all of them together into a panel. Surely an upfront system rather than a system that checks afterwards whether processes were followed is the safest possible system.

Professor Roderick MacLeod

I agree with this. I do not believe there is a safe system yet. I know the Australians are enthusiastic about their legislation. I can speak about New Zealand and I do not believe ours is particularly safe. My plea is that if legislation is passed there is a way to closely examine exactly what happens. Why is somebody asking for assisted dying? What is the nature of the intolerable suffering? Who determined that the prognosis was X number of months? How available was expert palliative care? Is there really existence of mental health problems? As I have said, at a conservative estimate 25% of people approaching end of life have a depressive illness. Have they had recent bereavements? Are they lonely? Do they have financial worries? All of these things contribute to somebody's desire for a hastened death and yet in our legislation none of this is recorded. All that is recorded is what the Act says has to be recorded, which is age, ethnicity and diagnosis. There is nothing about how the prognosis was reached, what the suffering is or how well the medication worked. The reports we have had so far, and there have only been two, have been remarkably bland and really worse than useless in regard to saying whether or not the legislation is safe.

Professor Ben White

I will pick up on a point made by a number of the witnesses. There are a number of end-of-life decisions, including hastening death through palliative sedation or palliative care and withdrawing or withhold life-sustaining treatment that results in a person's death. These can be done by a single doctor. In some instances, if it is futile treatment, they require consent of the patient. By contrast, voluntary assisted dying has more scrutiny than any type of end-of-life decision. There must be two doctors involved who have to assess eligibility. In Australia they have to complete forms, fill them out during the process and send them to an oversight board.

It is reviewed again at the end. When we talk about safety, I think this context of voluntary assisted dying in Australia has been the safest and most scrutinised type of end-of-life decision-making and is significant for that point about safety.

An Cathaoirleach

I thank Professor White very much.

Senator Lynn Ruane

I thank everyone for their presentations and the information provided so far. We are coming quite close to the end of these committee hearings. When I came in first, and this still remains the case, I leaned towards there being assisted dying in certain circumstances. What has not become apparent to me are those certain circumstances. I still find myself in this situation at the end of these committee meetings, so I need to get very clear, very quickly as we approach the end of our deliberations.

In saying that, I direct my questions to Professor White. When he referred to looking at the "ethical values that should underpin the law in this area", I suppose these ethics are somewhat on a sliding scale in terms of how to determine what the limited circumstances are in this regard. When we then widen out these circumstances, the ethics change in respect of their balancing or weighting. I am wondering now about how we can come up with a structure in which we can take and balance those ethics against circumstances. I am also wondering whether setting out those circumstances should be done in the drafting of the legislation or if it should be the case that those guiding principles and ethics actually underpin the decision-making on a case-by-case basis. I wonder if Professor White could go into a little more detail concerning how the balancing of those ethics against the legislation currently in place resulted in what those limited circumstances were, and what they are. Was any consideration given to using those underpinning ethics when people apply for or requesting assisted dying, rather than in the context of the drafting of the legislation?

As I sit down to figure out what I think about this matter, I am wondering how we can apply those ethics that underpin the law currently and how we can apply them to each and every situation that then results in legislation. I am not sure if I am being clear about what I am asking, but Professor White can let me know if he needs me to elaborate further.

Professor Ben White

I see the issue the Senator is grappling with. The final output of the law will depend on and be shaped by how those values are balanced. For example, if there were to be an unfettered commitment to autonomy, then there may be a willingness to allow for assisted dying if people want it, regardless of whether they are terminally ill or not. In terms of the process, my colleague, Professor Lindy Willmott, and I wrote a book chapter where we tried to articulate what those values were. These included, for example, the balancing of autonomy against life and the need to safeguard the vulnerable. All these values together led us to suggest a model, for example, limited to people who were terminally ill and going to die in any event.

In terms of the Australian experience, each of the voluntary assisted laws has some of those principles included in the legislation as part of guiding how the overall legislation works. The final decision about who is able to get access to voluntary dying, however, is specified very clearly in those eligibility criteria. That steps beyond those broader principles. Each of the six state laws specify, extremely specifically, the eligibility criteria in Australia. As mentioned before, these are quite narrow. We are talking about competent adults who have decision-making capacity and who have an advanced and progressive illness. Some states also require it to be incurable.

Critically, the adults are expected to die within six or 12 months, depending on the state or illness. That balancing exercise by each of the parliaments and parliamentary committees just like this one led to a model that drew those eligibility criteria in the way I mentioned.

Senator Lynn Ruane

The ethics that we naturally think are in opposition to each other are autonomy and the values of life. Is death not included when considering the values of life as an ethical ground, given how life and death are so intertwined? Is there a conversation around death being a value of life rather than in opposition to the values of life?

Professor Ben White

The Senator is right, in that those are the two key values – there are others, of course – that tend to be balanced in this setting. One of the things in the context of life was to unpack what “life” meant. Does “life” mean life at all costs? People attach different values or weights to life. For us, if someone has autonomy – the person is able to make the decision – and is terminally ill, we thought that was a sufficient balance to permit access to assisted dying. Another key consideration for us was compassion and the relief of suffering.

Senator Lynn Ruane

Professor White mentioned how the legislation’s implementation needed to ensure accessibility and navigability. Are there examples of accessibility issues arising under the current law in Australia for which he believes we should be catering?

Professor Ben White

In some Australian states, doctors are not allowed to raise the topic of voluntary assisted dying with their patients. There is an unusual situation whereby a doctor has a patient who is expected to die within six months and, from what the doctor knows of the patient and the patient’s values, the doctor believes the patient may be interested in the option of voluntary assisted dying. Some of our states do not allow that doctor to raise the issue. The patient may not know that voluntary assisted dying exists or that he or she is eligible or the patient might just be sitting there waiting for the doctor to raise it for him or her, because of course he or she would, if possible. This has been a significant barrier to access and to knowing about the concept of voluntary assisted dying.

Another issue that has arisen is that of institutional objections. In some institutions, patients have wanted to discuss voluntary assisted dying but that was not possible. Regarding the topic of conscientious objection, patients in some states have asked their local GPs, who have been their first port of call. In places like Victoria, there is no requirement for a doctor to point to the state government service that provides information about voluntary assisted dying. A number of patients reported this barrier to accessing voluntary assisted dying because they did not know where to go next.

Those are some of the issues. I have research that I could share with the committee, if that would be useful.

Senator Lynn Ruane

That would be great. I thank Professor White.

Deputy Alan Farrell

Good afternoon, good evening or good night, depending on where the witnesses are. I thank them for joining us. This has been an interesting discussion.

I will discuss the points made by a number of witnesses about the difficulty of the process that we are engaged in and in which other jurisdictions and parliaments have engaged. One of the key questions that I find myself coming back to continually is that of whose ethics and morality we are discussing. Are they based on centuries of experience, for instance, in the medical profession, or are they based on, for argument’s sake, a Judeo-Christian belief system or some other belief system? That can often shroud the issue and cause me in particular to ask further questions about the basis of the ethical or moral position. Having examined this process closely over the past while – the Chair will have to remind me whether it has been seven months, as I cannot recall and it feels much longer – it is similar to treading the needle while blindfolded and riding a horse backwards through a darkened forest.

It is almost impossible with the level of evidence that has been provided to us on a continuous basis. One of the key questions which has arisen this morning - I thank Professor White for doing so - is to introduce the argument or conversation about facts versus opinion. That is fundamental to this entire process. Despite the best will in the world, we have heard dozens upon dozens of evidence-based factual remarks and dozens upon dozens of papers have been submitted to this committee but, in equal measure, we have heard dozens upon dozens of witnesses' opinions not necessarily backed up with evidence to support their point. Of course, I would take professional evidence any day because it is important to inform the process but sometimes - I have to say I have heard it this morning - opinions are stated without evidence, or at least evidence presented or referred to. The key question I have at this point in time - it is to all witnesses but, with respect, it may be only answerable by Professor White - is to ask whether Irish legislators can protect the medical profession and recognise the need under a very specific set of circumstances that I do not expect all witnesses to understand? This committee has derived itself from a court case where a specific person tried to exit the State to avail of assisted dying and was stopped by our law which prohibits a person who is unable to end their own life to avail of the support from another person to do so. That is the fundamental question as far as I am concerned.

All that said, the key for me to try to understand whether we can protect the citizenry from the anecdotal stories which have been presented and the professional remarks which have been made about other jurisdictions like Canada, where I believe somebody referred to it as a runaway train? Whether that is appropriate or not, I am not sure, but it was referred to as such. Can we limit this to a very small number of circumstances in very specific cases, with medical ethical guidance in place to support a person in the process of making that decision? I am sorry if it is a rather long-winded question but perhaps Professor White, or any other of our witnesses, may wish to come in to answer those questions.

Professor Ben White

My answer to that would be that it is possible because there is safe voluntary assisted dying because if there was not, I would not have pointed to the Australian example where clear lines have been drawn. The Irish Parliament would be capable of doing that in exactly the same way. It has the opportunity to look at different models and to work out which model it thinks best suits the people of Ireland and to align with the values the Deputy mentioned. It is possible to do that and I would point to the Australian experience.

There was one brief point which the Deputy mentioned about protecting the medical profession. I have heard much discussion today about the harms that voluntary assisted dying causes to medical professionals. There is a wider body of evidence, so that evidence does not go all one way. Yes, it is challenging, difficult and a very significant and grave part of medical practice but there is also evidence which talks about the intrinsically rewarding nature of supporting patients with the choices they want. They also talk about the opportunity to walk that journey with their patient and to have open conversations the likes of which patients want to have. I might just flag that point because I know we discussed the protection of doctors. I think that is important. Robust conscientious objection provisions can make sure that any doctors who want to be involved are involved.

As part of our work on training in each of those three states, one of the components was a self-caring module where we engaged with what the research said on how doctors had perceived and experienced being involved in voluntary assisted dying.

There is research which points to the challenges but also the rewards and satisfaction of being able to assist patients with their choice. I wanted to mention that.

Professor Nancy Preston

On assisted dying versus euthanasia, the rates of euthanasia are much higher. In countries like the US rates have remained low. It is too early to know what is happening. It will be interesting to see what happens in Austria. In the Swiss system, it is not part of the healthcare system and is happening at home. That is another interesting model for the committee to look at.

In response to what Professor White said, the focus is not just doctors and the impact on them; it is about all healthcare professionals. When we interviewed nurses and wider healthcare teams, we examined the impact on everybody. We need to be really careful that we are not just thinking about doctors.

An Cathaoirleach

Thank you very much.

Deputy John Lahart

As we come towards the end of our work as a committee, I am struck by the quality of the contributions. Without wanting to cast any judgment on anybody, the best wine seems to be coming towards the end. The contributions and papers last week and this have been particularly interesting, stimulating and thought-provoking.

We have a national office for research ethics in Ireland which is more concerned with bioethics and research. I like the Danish model of a national council on ethics. I do not know if we have ever considered that notion. There would be a big argument about who should be on it, but if we established, or recommended the establishment of, a council on ethics, there would need to be very detailed consideration by experts - the word "expert" is not very popular these days. That is the model I like.

I have a couple of questions. The Danish council only considered Oregon and the Netherlands. We have been looking at quite a number of different models, most recently Australia and New Zealand. I want to be careful with language but I felt those models had the tightest regulation and dealt with the end of end-of-life cases. The models related to end-of-life illness and beyond palliative care issues as opposed to other choices.

I have some questions and comments on the Danish model. The Danish report refers to where it would be impossible to determine whether a wish for euthanasia has the necessary depth and persistence. What one's mental or emotional state and how enduring that is is a valid point. Perhaps we could hear a little bit more about that.

A position adopted by me and others on this committee was that we would not name particular conditions. We do not want to associate them with euthanasia or assisted dying. That was done last week, when witnesses cited a particular neurological illness. Other people live full lives to the end and make the choice to live life to the end. That has been one of my big learnings. From the start I have been very strong about not associating particular conditions with a choice of euthanasia or assisted dying because that is a very negative thing to do psychologically for society in general.

The Danish model states it would be impossible to offer euthanasia to those members of patient groups who may wish to avail of it without people in the same life situation being affected and burdened unreasonably. That is a point with which I strongly agree.

It is so that we do not label particular ailments as being more conducive or more deserving of consideration of that choice.

Has anybody any comments to make on what I see as the narrowness of focus of the Danish model? Do other countries have ethics councils such as that in Denmark? Have these been used in respect of the issue? If the Danes had broadened their research to include, for example, Australia and New Zealand, their findings might have been similar or dissimilar. It is up to the Chair who responds.

Dr. Frank Beck Lassen

I might be able to answer the question so I thank the Deputy for that. The circumstances of the debate on assisted dying in Denmark are somewhat different from the ones presented in Ireland and other nations in the sense that the public debate has not progressed that much. No parliamentary committees are debating this as yet. The engagement made on behalf of the National Council of Ethics was a preliminary one. It is almost obvious that including more jurisdictions in the survey that the national council did would have been preferable, but there was a time issue for us based on parliamentary politics in Denmark. Local circumstances made this more of a quick process. Certainly, it would have been preferable to include some of the jurisdictions that have introduced this, which are the ones the committee is debating, including Canada, New Zealand, Australia and Austria, in our next round of discussions.

Professor Merete Nordentoft

I do not know whether there was a misunderstanding regarding the role of the Danish ethical committee. Euthanasia or assisted dying is not legal in Denmark at this time. The role of the national ethical committee has nothing to do with deciding on who should be eligible. The committee was just asked to provide arguments for and against the issue for the parliament. The vast majority of us were against, based on all these arguments the committee has heard.

As part of the process, as Dr. Beck Lassen mentioned, we looked into different countries. I agree we might have looked into more countries but we had meetings with NGO representatives. Of course, these related to case reports, more or less, but they were afraid - I would not go as far as to call it the right to exist - that the people they represented would be seen as something less valuable because a person in a similar position could be given the option of assisted dying. They were concerned about whether the societal view of disability would change as a consequence of new legislation. That was their concern. We just listened.

Senator Fiona O'Loughlin

I thank the four witnesses. They have given us valuable insights and thoughts into what is an increasingly complex situation that we are tasked with looking at and making recommendations on in the report.

Something that struck me this morning was the thought that we should have ethics versus facts or research. I do not think it is a binary choice between the two. In contemplating all the different testimonies we have heard, we are tasked with trying to understand both. Ethics and values certainly have a place, as does evidence, research and lived experience.

That is the crux of what we have tried to do over the past number of months.

I have a few questions for the witnesses. I am particularly interested in what Professor Preston said about the impact on families. We have heard from families. It is interesting to hear her perspective, in particular the issue of secrecy and how that impacted on families and how we could try to make things better. We must consider whether there could be an open and transparent system, with the necessary safeguards. Does Professor Preston think that would be easier on families? People would not feel they have to have a secret plan in place. I can imagine it could lead to a lot of tensions within families when one or two family members know what is happening and others do not. That could lead to a difficult split afterwards.

Professor Preston referred to removing assisted dying from the health system in order to help health professionals. That would go against what other witnesses have said about having doctors who know patients very well. If we had a firm system of conscientious objection and were such a system to come into place in Ireland, does Professor Preston feel that would achieve the same goals?

I want to ask Professor White about the research he spoke about. It is the first time I have heard about some of the safeguards in place in some of the different assisted dying systems leading to difficulties with patients accessing the service. I would be of the view that if we were to introduce a system of dying in Ireland we would need to have very strict safeguards and criteria around that. I would be interested in hearing him elaborate on the type of safeguards that are causing these delays or patients being unable to access services if something is in place.

Professor MacLeod spoke about his concerns of abuse, concerns we all have. He also referred to the importance of palliative care and noted that there is not enough education around it among the medical profession or families. That is concerning, as somebody who has seen palliative care in use. It is a terrific system and those who administer palliative care are wonderful people and give great solace. I refer to the Danish national council on ethics. Professor MacLeod made interesting points in the conclusions he has come to. The general conclusion was not the overall conclusion, but it was found that issues of consent and access cannot be regulated in a satisfactory manner, something which is an area of concern. If we go down this road, they are the areas we would want to see safeguarding cover.

Professor Ben White

I am happy to speak. Perhaps Professor Preston could speak first.

Professor Nancy Preston

I absolutely agree with the points the Senator made on families. Our recommendation is that when a patient has a consultation about an assisted death, they are informed about the potential impact for their immediate family who know what is happening and also the wider family, and that they start to consider how they would have those conversations. Even if that might be exhausting for a patient, other family members who are aware of the situation could have those conversations.

Bereavement support often comes through hospices.

Hospices often have, perhaps, a religious title but may not be a religious hospice but they are still called saint something. People feel unable to access them because they are concerned that they have committed an act they should not have and can sometimes feel excluded from bereavement services. Again, we should ensure that we are offering bereavement services to support people after an assisted death.

In navigating the system, I would say that that is as much for the patients and their families as it is for healthcare assistants. An example in Victoria when it first came in and was legislated for was that one had to have two specialists to complete the forms and to do the assessments. It becomes very difficult to find those people. In Switzerland, people get lost within the healthcare system asking palliative care doctors about an assisted death but they do not to help them. Only two of the people we ever interviewed said that they had even mentioned right-to-die associations. Patients are having to find out other ways to navigate that system. These are people who are ultimately dying and are quite unwell, so it is very hard for them to try to work out what the system they should be navigating is.

The other thing I would say about conscientious objection is that it is not an either-or decision, or it is not binary. A doctor or a nurse may decide that they would not actually help in physically administering a drug or prescribe one, but they might or might not be willing to do an assessment. They might be willing to say that there are right-to-die associations and they might not. They might make a bed for a patient who is receiving an assisted death and they might not. We found a real continuum on conscientious objections on certain levels as to what a doctor or nurse would be involved with and it was not always binary.

An Cathaoirleach

I thank Professor Preston. I must move on to round two of questions now. I inform everybody that this is strictly four minutes per questioner. That is, two minutes for the question and two minutes for the answer. I call Deputy Farrell first, please.

Deputy Alan Farrell

I thank the Cathaoirleach very much. I do not believe that I will take up the four minutes as I have just two quick questions. Could the witnesses explain what the idea of removing such a service from the healthcare field means to them? Second, I believe Professor White referred to the access difficulties in Australia and to institutions which had some difficulty in the provision of the service. Did he mean hospitals and is it that those hospitals are religiously based? Perhaps he might provide clarity on that question, please?

An Cathaoirleach

Can Professor MacLeod respond to that question, please?

Professor Roderick MacLeod

Does the Cathaoirleach wish me to respond to that?

An Cathaoirleach

Yes, if he can, please.

Professor Roderick MacLeod

It is interesting that only 7% of assisted dying takes place in hospitals in New Zealand. Some 80% takes place in homes, 3% in hospices and 10% in residential age care. It has moved out of hospital but that is probably because hospital doctors do not particularly want to be involved in it.

I wanted to make a point earlier on about the nature of suffering. When we are talking about palliative care education, medical students get taught virtually nothing about suffering. Everybody assumes that they know what suffering is. If one looks at the evidence, as Professor White would have us do, there is clear evidence that suffering is rarely constant. It waxes and wanes and so-----

Deputy Alan Farrell

I am sorry to cut across Professor MacLeod but I did ask a particular question but I do not want to diminish his point. To be fair, however, I did ask two questions. I thank the Cathaoirleach.

Professor Roderick MacLeod

I am very tired. It is 2 o'clock in the morning and I cannot remember what the second question was.

Deputy Alan Farrell

My apologies, of course, and I thank Professor MacLeod.

An Cathaoirleach

I call Professor White to speak now, please.

Professor Ben White

I want to address the issue and the question the Deputy asked about whether assisted dying sits within healthcare in Australia. It does and is seen as part of healthcare and is supervised by medical doctors through eligibility assessments and is seen as healthcare. I see benefits with an approach like that if we are thinking about safety and quality. Medicine and healthcare generally has around it a framework of safety and quality which ensures a certain amount of quality care and by situating assisted dying within it. It provides an opportunity for that to support the safety of it. I also believe there is regulation of health professionals by disciplines, medical councils and so on. Taking it outside of that can also mean we are not having the opportunity to benefit from the existing health regulation which exists.

My final point is on rigorous assessment by trained health professionals.

When that sits within the health setting, you are more likely to get high-quality, consistent decision-making.

Deputy Alan Farrell

What about the institutions Professor White mentioned?

Professor Ben White

Some of them are religion-based and some are palliative care units. The issue was that some institutions were not allowing people to enter premises to talk about voluntary assisted dying. There is a care navigator service in Australia that can provide information to patients. It is not providing voluntary assisted dying or assisting patients; it is just giving information. Some patients who could not be safely moved out of the facility were not able to get the information in question because the navigators were not allowed in the door.

Senator Rónán Mullen

I thank our expert witnesses again. The information is all very helpful. It is noteworthy that countries that have legalised assisted dying, particularly in recent years, have been giving themselves an A grade for compliance and safety. Professor White's definition of safety was very helpful. With regard to examining eligibility, are systems able to ensure that only those who are eligible can obtain access? I am wondering whether it is actually possible to measure. I would be glad to hear from Professor MacLeod, with whom I sympathise because of the late hour in his country, and also Professor White. Surely there are things that are very difficult to measure if talking about an evidence-based approach. When we have palliative care experts coming in here saying they are really worried that the relationship between the doctor and patient would be changed, and when medical people are saying they are worried attitudes to palliative care will be changed among those who fund healthcare, such that it would be seen as economically advantageous to promote euthanasia or assisted suicide, we worry that, over the longer term, people will come to feel a burden and that there will be less sympathy for those with disabilities who fight on. We heard from a disability activist in recent weeks who talked about people asking why they continue living or why they do not end their life. Is it not fair to say we do not have the research on all these questions and that, in fact, it is very difficult for Professor White, looking at Australia, which has legalised assisted dying only relatively recently, to predict how things will change over time as a result of the legislation. Does he have any evidence that can reassure people there will not be a big change in attitudes over time?

Professor Ben White

I guess I am not making claims about what changes will or will not happen in the future. The Senator mentioned that we are worried on the basis of the number of times people have made those assertions. In considering that, I am interested in knowing what evidence or things they are pointing to. In countries where assisted dying has been the practice for more than two decades, such as the Netherlands, I am not aware that research shows people do not trust their doctors anymore. I guess I am not making claims about what-----

Senator Rónán Mullen

What did Professor White see in Canada, for example? When he examined research from there, what conclusions did he draw?

Professor Ben White

I have not looked at the research in Canada on the issue of trust in health professionals, so I would not be in a position to comment on that.

Senator Rónán Mullen

But he did refer to some Canadian research that he was aware of. What did it show him?

Professor Ben White

The research I was talking about was the evidence I believe Professor Jocelyn Downie had given in response to claims about slippery-slope arguments. The Senator has that evidence in front of him, so I will not repeat it.

Senator Rónán Mullen

What is the professor's recollection of it?

Professor Ben White

That the Carter decision established a boundary as to what the law in that country was, that subsequent legislation that was passed fell short regarding the Carter decision and was challenged as a result, and that, subsequently, legislation that was passed and is now being considered aims to rectify non-compliance with the charter decision of Carter. Others are expert on that, but that is my understanding of it.

Senator Rónán Mullen

I am not hearing very much that is reassuring, though, given that something like 7% of deaths in Quebec are now a result of euthanasia and assisted suicide. It has been several weeks since we looked at the figures, but the statistic is shocking.

This is why countries like New Zealand and Australia have to be a little bit careful about telling us how safe things can be if they extend the meaning of safety to address the issue of how attitudes may change over time. I want Professor MacLeod to speak to us about this interaction. He talked about practical wisdom as being something of value, similar to evidence. We all recognise that we have to honour that and in so far as we can get evidence on things, we have to treat it as the truth but am I not correct in saying that there is an awful lot here that not only do we not have evidence about, but that it would be very difficult to ever have evidence about? We are talking about shifting social attitudes and all of that.

Professor Roderick MacLeod

I find myself warming to Senator Mullen more and more because what he is saying is absolutely right. We do not have a lot of hard evidence for what we are talking about. I mentioned previously that the notion of evidence-based practice is a balance of two things, namely factual evidence and practical wisdom. What the palliative medicine specialists are, in the majority, telling us is that they do not favour this at all. They are the ones who spend most time at the bedside with people who are dying and with their families and we must ask why they do not want to be involved. It is a fairly simple question to ask. In New Zealand there are over 18,000 doctors but only 300 of them have volunteered for the training to help people to die. We have to ask why that would be because it is very well remunerated. It is a lot better remunerated than providing palliative care to a patient. There are lots of mismatches here. We have heard an awful lot in the last two hours about evidence but while evidence may be peer reviewed, it changes. Evidence changes over time and Senator Mullen has brought up a lot of very pertinent questions to which we do not really have answers.

Deputy John Lahart

Counterintuitively, what the professor was suggesting is that given that the positions are so well remunerated, one would imagine there would be more professionals seeking to do it whereas there are very few professional medics engaged in this.

We have had palliative care experts give testimony to the committee that there is a pain beyond the reach of palliative care and that there are situations beyond the reach of such care. That is one of the issues that has exercised my mind.

When we started our work here, I was one of the people who said that this work concerns the great questions of life. Where do we come from? Why are we here? What happens when we die? If one is a believer and one believes that this life is a pathway to another life, then suffering makes a certain amount of sense. However, if one believes that this is it and that when one dies the shutters come down, then while suffering might still make a certain amount of sense, I suspect it makes less sense. It is very much embedded in the outlook of Judeo-Christian religions that one offers it up, it will be worth it and one's reward will be significant for having coped with it. It is one of the things I have tried to probe here because culturally, it is so anathema to what we have been used to here in Ireland. How would one eulogise a person whose death was a result of euthanasia or assisted dying? Would it be seen as a lesser death? I do not think we have got to that place here, but I have seen testimony from other countries, particularly Australia and New Zealand, and was particularly struck by the compassionate nature of their approach. We are talking about 1% of deaths. I think the average in Canada is 3.3%. It might have been 7% in Quebec but even 3.3% is outrageously high, in terms of where they are going.

In the Christian way of viewing things, there is a nobility and a dignity in suffering, or at least that is what we have come to understand or accept.

We do not see the torture or the torment so much.

I want to ask a question about coercion. We have heard that word quite a bit but every time I push witnesses for a little bit of anecdotal evidence, if that is not a contradiction, it is hard to elicit it. It is an issue that concerns me. Have any of our guests anything to say on this or do they have direct evidence of coercion, where they are convinced a patient was coerced into making a decision that was not in his or her own best interests?

Professor Roderick MacLeod

I can respond to that. People are very often coerced into having treatments that they do not want. Non-beneficial treatment costs the Australian and New Zealand healthcare system hundreds of millions of dollars every year. Families have pushed for people to have treatment which is essentially futile and in many ways, that increases the person's physical suffering.

To go back to the Deputy's other comments about the nature of suffering, surprisingly in the field of medicine, which is supposed to relieve suffering, there is remarkably little research into the nature of suffering but there is some good work being done at the University of Sydney. As I said earlier, what we know is that it is rarely consistent. If patients are expressing their suffering to their family, their family will often support them and may even push them to seek a way out and yet that suffering can be relieved, although not always, as the Deputy pointed out. It cannot always be relieved but it can always be changed. That is the thing. If you have a stone in your shoe and you keep walking on it because you cannot get rid of it, what you will do is move it. That is part of the nature of suffering.

If the committee is serious about wanting to use this legislation to alleviate suffering, then it has to have a very clear understanding of what suffering is. It is not just what one might think it is; one has to look at the evidence. Writers like Eric Cassell from America and Megan Best from Sydney tell us that suffering is not as simple as it may seem.

Professor Ben White

Just to mention that in some of the research we have done, the coercion we have seen is actually in the opposite direction. As Professor MacLeod mentioned, often families will want their loved ones to hang on. They will say, "Don't go. Don't go down this path". There was some discussion, when we interviewed family members and doctors, about leaning on mum or dad and asking if they can have a little bit more time. That is an important point when we are thinking about coercion, that it can also go the other way because we have a natural tendency to want our loved ones to be here with us.

An Cathaoirleach

Thanks very much. On behalf of the committee and the secretariat, I thank Professor Nancy Preston, Professor Roderick MacLeod, Professor Ben White, Dr. Frank Beck Lassen, and Professor Merete Nordentoft for their attendance here today. I know that the hour for some of our guests is very unsocial and we really appreciate their Trojan efforts to give their evidence this evening. It is very much appreciated by all of us. Our guests have given us a lot to think about. We are only as good as the expertise that we are gaining from professionals such as our guests today. We really thank them, particularly in the context of the lateness of the hour for some. We will now adjourn until Tuesday, 13 February.

The joint committee adjourned at 1 p.m. until 10.30 a.m. on Tuesday, 13 February 2024.