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Joint Committee on Assisted Dying debate -
Tuesday, 11 Jul 2023

Developing a Legal Framework for Assisted Dying: Discussion

Parliamentary privilege is considered to apply to the utterances of members participating online in a committee meeting when their participation is from within the parliamentary precincts. There can be no assurances in relation to participation online from outside the parliamentary precincts. Members should be mindful of this when they are contributing.

This committee discusses dying, including suicide. Support information can be found on the committee's web page. I am delighted that we have engagement today with Professor Deirdre Madden of University College Cork, UCC, who is joining us online; Professor Mary Donnelly, who is also from UCC; and Professor David Albert Jones, of the Anscombe Bioethics Centre. I welcome the witnesses to the meeting.

We are grateful to them for sharing their knowledge with the committee and we very much appreciate their time.

The format is that after the witnesses have given their opening statements, the members will then ask questions. A member may ask an individual witness a question or address a question to all the witnesses. Before the witnesses give their opening statements, there are clocks on the wall and I ask them, inasmuch as they can, to adhere to the agreed five minutes if at all possible as we must run the meeting to schedule. I invite Professor Deirdre Madden to make her opening statement.

Professor Deirdre Madden

I thank the committee very much for the invitation to address it this morning. I have been asked to focus on how medical ethics should play a part in developing law in this area so I will start by speaking briefly about medical ethics in general.

Medical ethics, as I see them, are the normative consideration of ethical issues in medical practice. They seek to establish the rightness or wrongness of an action within a framework of agreed values. Medical ethics are vital to the practice of medicine and thus to any understanding of medical law for several reasons. The first is because medical practitioners have traditionally looked for guidance in their decision-making to ethics rather than law. There are certain areas that the law leaves to the medical profession to regulate, and thus reflect the corporate morality of the profession. At a practical level and to assist doctors, professional guidelines are produced by medical regulatory bodies to ensure the conduct of doctors towards their patients and colleagues meets certain agreed standards. Many professional bodies use a principles-based approach, which is based on respect for autonomy, beneficence, non-maleficence and justice.

Some legal principles have been influenced by the evolution of ethical principles – for example, the law of consent to and refusal of medical treatment is based on the principle of respect for autonomy. Some areas of medical law are relatively undeveloped, with sparse legislation and few judicial precedents. Although the judicial function is not to be an arbiter of different ethical perspectives, such perspectives nonetheless inform public debate and academic literature on medical law.

When issues are defined as "ethical" in the medical context, we sometimes think that there is a coherent set of governing principles and a mechanism within the medical profession that enforces adherence to them. However, the fact that we can identify an ethical element to a situation does not necessarily mean that it is appropriate to consider the decision to be best made by professional bodies. As clinicians, doctors have no unique competence in the resolution of ethical issues - medical ethics is not a matter solely within the jurisdiction of the medical profession. Although the medical profession can tell us about a patient's condition and prognosis and about the probable consequences of certain kinds of treatment or care, the question of whether it would be lawful to provide or withhold the treatment or care is a matter for the law.

As Chief Justice O'Donnell said recently in relation to a surrogacy case, "a mature society should be in a position to formulate its own policy on the many ethical and moral issues that the developments in science present". That of course is the task of this committee, namely, how to formulate an appropriate and proportionate response to a difficult policy issue. If we were to take the view that what is acceptable in society is determined by ethics rather than law, not only would this be democratically problematic, but we would also have to decide whose ethics to adopt. The law reflects the public conscience, as enacted through our democratic process set out in the Constitution. All citizens, be they medical professionals or not, must operate within these broadly stated legal rules, as provided for in legislation, but how should we decide what that public conscience is or what if societal norms are incompatible or public conscience is divided? There is no formula for reconciling this conflict of principles and no easy answer.

Law is one of the things that shapes behaviour in individuals. For example, if the law makes stipulations about consent for medical procedures, it becomes more likely that gaining consent will become standard behaviour because what goes for individuals is likely to go at least as far for professions. That is because professions are constituted by individuals. If law can make a difference to the standards and patterns of behaviour of individuals, that difference will be predictably aggregated when those individuals are aggregated. Since the ethos of the medical community is inseparable from the collective ethos of those medical professionals that constitute it, there is an expectation that whatever difference the law makes to the habitual behaviour of those individual professionals will filter up to the profession. On this basis, we can see how professional medical ethics is shaped by the law of the land.

Law also shapes professional character actively. Professions and their members enjoy a certain social status and privilege.

Medical practitioners can dispense drugs and perform surgery. The Medical Council, which is the professional regulatory body for doctors, has the power through registration to authorise individuals to do these things. The trade-off is that the ethos of the profession is both directly and indirectly shaped by the law.

I will return to the question of how medical ethics should play a part in developing law. We need to avoid a philosophical pass-the-parcel, with law passing the buck to ethics, and ethics handing it back again. In a democratic society, law must take precedence for several reasons. First, the law has in place structure and procedures for the detailed examination and adjudication of difficult and often controversial questions. Second, regulatory codes of professional bodies are often intelligent, thoughtful and useful documents, compiled after wide consultation. However, they cannot have the same sort of credibility as an Act of the Oireachtas or a judicial decision. Third, regulatory bodies may have their own internal politics or sometimes unspoken ethical presumptions. Fourth, the law has the advantage of having to decide. That is often uncomfortable but it produces a quality of thought that is absent when one simply has to say what principles might apply in the abstract. Finally, the law has a decisive advantage, which is power. It has the authority to decide, and the obligation to do so.

To conclude, the process currently being undertaken by this committee is designed to be a balanced, reflective, open and inclusive process, which will enable members to appropriately consider ethical, medical, legal and patient advocacy perspectives in reaching conclusions as to the best way forward. Medical ethics certainly has a role and a voice along with all these other perspectives, but it should not be determinative of public policy in this area. I thank the committee, and I am happy to answer any questions.

Professor Mary Donnelly

I thank the committee for the opportunity to speak. My opening statement will outline relevant issues to be considered in legislating for assisted dying with particular reference to issues of consent and capacity, and the interaction between any proposed assisted dying legislation and existing legislation relating to capacity.

A growing number of jurisdictions have introduced legislation for assisted dying. This has sometimes followed a political process or referendum, and sometimes because this was required by the courts. There is no single template for drafting a law on assisted dying. Each jurisdiction’s legislation reflects a range of policy choices. Each of these operates in a different way to balance the unavoidable tension between providing access to assisted dying for those who wish to avail themselves of this, and protecting those who are vulnerable from being pressured. That is why it is important to interrogate the question of whether we should introduce legislation for assisted dying alongside the question of what such legislation should look like. In other words, we must be concrete in our deliberations.

Drawing on the experience of other jurisdictions, some relevant policy questions will fall to be addressed. First, should assisted dying be medically administered or simply medically prescribed, leaving the final action to be taken by the individual? The latter is more common in older legislation. However, more recently there has been a move towards medical administration. The main reason for that shift has been to reduce the possibility of error.

Second, there are questions of eligibility. A key question is whether a person should have a life-limiting condition before they can avail themselves of assisted dying. Two of the newer jurisdictions, New Zealand, and Victoria in Australia have opted for this, as have most of the US states. However, Belgium, the Netherlands and Canada have opted for a situation in which a person has, to quote from the Canadian legislation, some form of "grievous and irremediable medical condition". The latter extends access but raises further safeguarding issues.

Third, there are questions of safeguards and standards. All assisted dying legislation throughout the world is based on a requirement for informed consent. Legal and ethical understandings of consent encompass three elements - adequate information, a voluntary choice and capacity.

I will focus on capacity and how assisted dying legislation might interact with our legislation relating to capacity. I will start with the question of age. In Ireland, section 23 of the Non-Fatal Offences Against the Person Act 1997 states that a person may consent to medical, surgical or dental treatment from the age of 16 years. However, most jurisdictions other than the Netherlands and Belgium operate on the basis that someone must be 18 years of age before they can access or consent to assisted dying. This older age requirement reflects a safeguarding concern regarding the validity of consent by young people although, arguably, this is something that could be addressed by requiring judicial oversight as is the case with treatment refusal by young people in this jurisdiction.

For those over 18, we now have the Assisted Decision-Making (Capacity) Act 2015, as amended, which came into force on 26 April 2023. It affirms a functional standard for capacity to consent to an "intervention". This is something that would work equally as effectively were it to be applied in the context of assisted dying. Having said that, there is an absolute need to be extremely careful in assessing capacity. We can talk further about that in the context of the questions.

I wish to draw the committee's attention to a couple of issues regarding simply applying the Assisted Decision-Making (Capacity) Act in the context of assisted dying. The first is that the Act provides for supports in supporting an individual to make a decision. This is a very positive element of the Act and is line with the State's obligations under the UNCRPD. However, it does raise oversight issues in the context of assisted dying that we would have to think about.

I have two further brief points, both of which relate to advance healthcare directives, AHDs. The Assisted Decision-Making (Capacity) Act 2015 allows a person aged over 18 years with decision-making capacity to make an AHD that extends to refusing treatment, including life-sustaining treatment, if he or she subsequently loses capacity. Provided that the AHD is valid and applicable in line with the standards set down in the Act, the treatment refusal is legally enforceable. The question the committee must consider is whether a person should be permitted to request assisted dying. I should point out that to my knowledge, only the Netherlands and Belgium permit advance requests for assisted dying. If we were to do so, we would need to make some changes to the way in which the Act addresses AHDs. I can speak further to those during questions.

A final point it is important to be aware of is a concern that has emerged in a number of jurisdictions where there is a gap. An appropriate safeguarding measure would be a gap between when a person requests assisted dying and a second request so there is a time period between them. Most jurisdictions operate on the basis that the person must have capacity at the time of both requests, in other words, the original request and the subsequent request. This creates problems, particularly where assisted dying is used at the end-of-life stage because there is a real possibility that a person may lose capacity in the interim. My concern in respect of that is that we have seen - certainly in Canada - situations in which people who use assisted dying end up dying before they would wish to because of a concern that they will lose capacity. In terms of thinking about advance decisions and whether it is possible to make an advance request, there is a smaller question - the one I have just raised there - as to whether it should be permissible for a person to waive that second consent in a situation where he or she is likely to lose capacity. I thank the committee for its attention, look forward to answering questions and wish it well with its important work.

I thank Professor Donnelly very much. I now call on Professor Albert Jones.

Professor David Albert Jones

I thank the members for the invitation to address the Joint Committee on Assisted Dying. I am director of the Anscombe Bioethics Centre in Oxford and professor of bioethics at St Mary’s University, Twickenham.

The first thing I would like to flag up is the importance in this context of unambiguous terminology, or at least terminology which is as clear as we can get it. From this point of view, the phrase "assisted dying" though it is being used by this committee, is problematic and challenging because it is used by different people to mean different things. That can be seen internationally. If this phrase is going to be used, we need to agree on its meaning and what it is used for, and I suggest the most helpful and least problematic meaning is as an umbrella terms for different forms of euthanasia or physician-assisted suicide, which exists in different jurisdictions.

The topic for today, or at least that which I was given, is developing a legal framework for assisted dying. However, there is a legal framework for assisted dying in Ireland. The framework is that euthanasia is illegal under common law and the Criminal Justice Act 1964 and assisted suicide is illegal under the Criminal Law (Suicide) Act 1993 as upheld in Fleming v Ireland in 2013. This puts Ireland among the 180 or so countries in the world where euthanasia and assisted suicide are prohibited, or are not practised, rather than among the dozen or so countries where they are available. There are differences between different legal frameworks which provide either euthanasia or assisted suicide or both and we can talk about these different frameworks. However, what they have in common is more significant than how they differ. Those dozen or so countries that have introduced some form of assisted dying have all abandoned a principle of healthcare ethics which is as old as Hippocrates and a legal principle which, in most countries of the world, prohibits the intentional taking of life.

This is a radical change and as a result has practical implications. If one crosses the Rubicon, as it were, it is very difficult to have lesser barriers which will be as effective. If we have abandoned this historically very well-established and very deeply rooted rule against euthanasia and assisted suicide, how long could we maintain a much more arbitrary rule such as it being available for people with six months to live but not for those with seven months to live? That is obviously not as fundamental a principle. How long could we maintain a rule that it should be permitted for those with this diagnosis but not for that diagnosis? If we look at what happens in these different jurisdictions, and this is something common to the different jurisdictions, numbers go up in every one, categories tend to expand and restrictions tend to drop away. Nor is it only the future extension of the law that should concern us, and therefore one might say restrictions or requirements within the law, it is also the impact of the law outside on wider society. We need to consider how this legal change affects the perception, both the self-perception and the perception by others, that someone might feel a burden to society? How does it impact the way other medical decisions are made? How does it impact the cultural acceptability of suicide, that is, unassisted suicide, for people who have severe physical or mental disabilities? We know that in the United States, unassisted suicide rates have increased significantly in those states which have legalised assisted dying in comparison with those that have not. The legal frameworks now in place in Ireland and in the United Kingdom, which in this area of law are very similar and which prohibit euthanasia and assisted suicide but allow other end-of-life decisions such as withdrawal of treatment and the giving of treatment which has risks or side effects, offer a clear bright line, which is much more robust and protective than any collection of ad hoc requirements after this bright line is taken away.

Once the dam has been breached, it is naïve to think a series of makeshift barriers downstream will have the same protective effect. That is what we are talking about.

I thank the witnesses for coming before the committee to assist us. I will start with Professor Jones. I am taking two points from what he is saying, which are to do with safeguards and eligibility. We have discussed the question of safeguards with lawyers over the past weeks. Do they work? Professor Jones seems to be suggesting that they do not.

Professor David Albert Jones

The current law should be thought of as a safeguard. The current law - the 1993 law, in particular - is a safeguard against the encouragement or assisting of suicide. Once that is taken away, other kinds of safeguards are not as safe and they do not guard in the same way. What happens is either that they gradually expand, or are not applied so much, or there are actions which are outside the law and increasingly tolerated. I encourage the committee to look not just at what the law says, but also at how it is actually put into practice in these other jurisdictions. We can look at places like Belgium. Out of 27,000 assisted deaths, I think there have been two referrals for prosecution, only one of which went to court. There is a further 50% of cases, which were never even reported. That 27,000 is therefore more like 50,000. In Ireland that would be approximately 15,000 deaths.

I want to probe further on that. I have heard some say that we are talking about the New Zealand or Victoria model, which has a narrow scope of eligibility, such as a terminal illness or a certain predicted period of life ban, to put it crudely. There is also the suggestion that the numbers do not always really go up, or if they do it is because there was a backlog waiting for legalisation.

Professor David Albert Jones

You can speculate as to the reason, but I do not know of an example where they have not gone up. That is also true in places like Switzerland, the Netherlands, or Oregon, which have had more than 20 years of this. The numbers are still going up. I do not think that is a backlog. I think that is a culture shift. I think it came in last year in New Zealand, so it is difficult to know where New Zealand will be in ten or 20 years. If you want to look at where we might be, you should look at places that have had it for longer. I also question the notion that you could restrict these things. They have a momentum and logic of their own. If you say you will allow it for a certain type of person, or if you can take it yourself, then why not also allow a doctor to do it? There will be pressure.

I am not sure, but I think New Zealand might be 2017. Others may confirm whether I am accurate about that. Is Professor Jones's case that this is in countries where it is longer established?

Professor David Albert Jones

We have more evidence for the countries where it is longer established. We have evidence of what happens, and I think those are the places you should look for evidence. I also think the tendency in all countries that have had it for a reasonable amount of time is toward expansion; an expansion of category as well as expansion of numbers. You should therefore look to those places like Canada and Belgium, which are more expansive, to see where this might go. You should not just think about where this legislation or this practice might start, but where it might realistically go. I think therefore you should look at the more expansive countries, and not think that the ones which have recently had more restrictive laws will maintain those laws.

I have a last question for Professor Jones. Public opinion polls, not just in Ireland but also in other places, seem to suggest a wide acceptance of assisted dying, assisted suicide or euthanasia - call it whatever you wish. Does that not reflect an inevitable ethical shift in people's thinking?

Professor David Albert Jones

It depends how you ask the question.

The Senator referred to people calling it "assisted dying" or "assisted suicide". An opinion poll in UK from two years ago asked people were asked what they thought "assisted dying" means. Over half of the people who answered said it is to do with withdrawal of treatment or with palliative care. There is significant confusion out there about what "assisted dying". People are accepting of it partly because they are accepting of things that are acceptable - things that are already standard. There is a portion of public opinion in favour of changing the law but I do not think that has changed. If you look, you will see that it has not changed over time. Politicians who have considered this in lots of different jurisdictions have concerns not just with what the average person thinks but also what those with most involvement in end-of-life care or disability groups think. They have been concerned more about the views of the people who are most vulnerable or the views of people who have the greatest involvement with dying, and not just with what an average voter thinks.

Professor Madden is saying that in the end, the ethical considerations must give way to the law and whatever the law is. Am I right in thinking that what she is saying is that doctors' perception of what is ethical may have to give way? Surely we must determine what is ethical and come to some kind of consensus on it before we can determine what is or should be lawful. To be blunt, is that not what Nuremberg was all about?

Professor Deirdre Madden

What I am asking is this: if we decide that the ethical debates should take precedence, whose ethics should we adopt? There are different views on this. Obviously, as the committee has heard so far, there are lots of different ethical grey areas and there are different views on this. What I am saying is that the views of the medical profession should not necessarily be the predominant view regarding the ethical debate. Up until around the 1960s, medical ethics was predominantly the purview of the medical profession. I do not think this is the case anymore. I think ethics is far broader than that and takes into account the views of ethicists, lawyers, patient advocates and so on. Ethical debates certainly influence the way of thinking about what the law should be because they influence public thinking and influence academic argument, which in turn influences judicial thinking, but I do not think that medical ethics should be the determining factor.

Does Professor Madden mean that she does not think that medical people's ethics should determine it? Would she not agree with me that it is the job of this committee to try to come to an agreement about what is ethical in each given situation and only on the basis of what we think is ethical to recommend a legal framework or indeed no change in the law? Is it not what we consider in our best assessment to be ethical in each case that must determine what we propose as to the law?

Professor Deirdre Madden

I am trying to tease out what the Senator means when he says what is ethical.

What is right or wrong.

Professor Deirdre Madden

According to his particular perspective, a particular doctor, the corporate professional medical ethics of the medical profession or a particular faith-based morality - it depends on whose ethics you are talking about.

Let us all say we came to an agreement that we think this is unethical for all sorts of reasons as to its impact on society. We could not credibly say we all think this is unethical but nonetheless we recommend a change in the law because not everybody would agree with us.

Professor Deirdre Madden

The difficulty is in reaching that kind of consensus. As I said in my submission, the difficulty is where there are these different views and conflicts between what people think of as ethical. Some people would prioritise respect for the dignity of the person while other people would prioritise respect for a person's autonomy. Other people might prioritise a different ethical value. The difficulty is in reaching that consensus.

As usual, there will not be enough time. It is fascinating. I thank our three contributors. I will start where Professor Madden finished. That is something I will have to take away.

I am a member of the Joint Oireachtas Committee on Health, and paragraph 3 of Professor Madden's statement reads: "As clinicians, doctors have no unique competence in the resolution of ethical issues - medical ethics is not a matter solely within the jurisdiction of the medical profession." It adds that "the question of whether it would be lawful to provide or withhold the treatment or care is a matter for the law". We have come up against that in matters regarding termination of pregnancy, where it is the law of the land, and where there are particular issues regarding conscientious objection, etc. That has been a challenge for the State, or where there is a particular outlook in a particular care setting. I thank Professor Madden for that contribution. It is one that we are going to have to consider very closely.

My questions are going to be short, and I do not want the witnesses to feel like they are being monstered or anything like that. I will be as respectful as I can, but I would like the witnesses' responses to be short as well, if possible. Does Professor Jones think, and I am asking him a "Yes" or "No" question, that there are absolutely no conditions or circumstances in which an assisted dying or euthanasia intervention - and that is my crude language - is appropriate?

Professor David Albert Jones

I do not think one can legislate for such situations.

I do not mean to pin Professor Jones into a corner, but from his own life experience - forget everything else - does he think there are absolutely no circumstances in which an intervention along those lines is appropriate?

Professor David Albert Jones

I do not think that there are.

On the advanced declarations, I am very interested in the three contributions here, and they have been very valuable again with regard to taking them away. The capacity piece is something we are going to have to go into a little bit more. The waiving of consent is, again, a tricky area.

I will go back to Professor Jones. He says that if the numbers go up, the categories expand and restrictions drop away. Give us some evidence for each of those. I am talking about evidence now.

Professor David Albert Jones

In Canada, they have gone up from 1,000 to 10,000. Those are the numbers, which is the first that the Deputy asked for. There are the numbers, and then the categories.

What numbers have gone up?

Professor David Albert Jones

The numbers of reported medically-assisted deaths in Canada.

From 1,000 to 10,000 when?

Professor David Albert Jones

From 2016 to 2021.

Could Professor Jones expand on "categories"?

Professor David Albert Jones

In Canada, it went from requiring terminal illness to not requiring terminal illness. In Oregon, it went from requiring residency to not requiring residency. In Belgium, it went from adults to mature minors. I would be very happy to supply more examples, if the Deputy would like.

That would be helpful, I thank Professor Jones. I find it hard, as a human being. I am not pressing Professor Jones, as I accept his bona fides. However, I find it hard to encounter someone who has never seen a situation where they have not been moved to think that there has to be a better way than this, because this is a terrible existence for a human being, whether it is in terms of the pain or something else. I find it really-----

Professor David Albert Jones

People seek to access assisted dying for various reasons, some because of terminal illness, some because of pain and symptoms, and some because of their social situation.

It is not that nothing needs to be done. Things need to be done. We need to improve palliative care, support for disability and suicide prevention, including suicide prevention among older people. I am not saying that the situation is hunky-dory. There are a lot of things that we need to do. I just do not think that this would be helpful, that is all.

I will ask a few questions and I will leave it to the three witnesses to answer. One of the witnesses referred to those who might feel pressured to use assisted dying as an option. Can Professor Donnelly or Professor Madden give an example of what that pressure might look like and where it might come from? Have we any anecdotal or hard evidence in that regard? What does an advance healthcare directive look like? Those are the two questions: first, who might feel pressured and what might that pressure look like; and, second, who might exert that pressure, in the experience of the witnesses?

Professor Mary Donnelly

To begin with the pressure, it is difficult to know. We can assume that any kind of a system would have mechanisms to avoid overt pressure, in other words, somebody saying “You must”. Obviously, that is possible and we have heard of situations where people have been pressured into, for example, going into a nursing home, and these kinds of pressures arise. Let us assume that that is not going to be an issue because we will put sufficient mechanisms in place to ensure it does not happen. The concern would be a more subtle kind of pressure so an individual would feel their life is worthless. For that, we absolutely need to have adequate access to palliative care. However, I believe we can avoid those kinds of pressures.

I cannot give the Deputy a practical example that I have seen in my own life or in my own experience of somebody who was pressured in a situation like this or, to be honest, in a situation where we are looking at refusing life-sustaining treatment. I cannot produce an example but that does not mean that I deny that such examples exist.

In terms of advance directives, they have been lawful in Ireland since April 2023, so a person can refuse treatment, including life-sustaining treatment. We have accepted that and it is part of our law. The question the Oireachtas will have to consider is whether something similar should be allowed in regard to looking for something. As the committee has heard over the last five weeks, our law draws a very clear distinction between what it describes as an act - doing something - and an omission. I have some issues about the legitimacy of that distinction but let us leave that aside for the moment. That is what our law does. In that perspective, we have measures, and it is relatively straightforward under the legislation that has just come into effect to make an advance healthcare directive. You do not need a solicitor and you do not need to have an advance assessment of capacity.

I would have a number of questions about how suitable that model would be if simply transposed into an assisted dying context, and I certainly think we would need additional safeguards. I would be pretty careful before moving towards advance decisions for assisted dying. I am not saying they are never appropriate, although I do see a distinction at that very end-of-life stage where people are ending their lives sooner because they are concerned that they will lose capacity. That worries me.

Professor Deirdre Madden

I thank the Deputy for the question. Something that occurred to me as he was speaking is the whole issue of voluntariness, which is crucial to giving informed consent for any medical procedure, and is something that medical practitioners who seek informed consent before performing, say, a surgical intervention, need to be conscious of. The issue of pressure and its opposite, the question of voluntariness, is not unique to the question of assisted dying.

On the kinds of pressures experienced, as my colleague, Professor Donnelly, has said, they could be financial pressures, family pressures or societal pressures. I do not have a concrete example, but one can anticipate or imagine how that might occur. The point is that it is not unique to assisted dying. Any decision in the medical context has to be voluntary and not subject to undue pressure. The way that we can deal with that is through appropriate expertise of medical practitioners, through their training and education, and through knowledge of what to look out for and what kinds of discussions to have with people who seek to make these kinds of choices of about end-of-life care. It is about trying to ensure, as much as possible, that their decisions are not subject to any pressure. There are safeguards in other jurisdictions that include having independent assessments and evaluations. Safeguards could be built in, such as having social work, psychiatric, psychological assessments to make sure, as much as possible, that the person is reaching a free, informed, voluntary decision. That is the best kind of safeguard we could have for that. As I said, it is not unique to this context.

Professor David Albert Jones

Looking at the data from Oregon, people there are asked why they choose assisted dying. The number of people who say it is because they feel they are a burden to others has gone up from around one third to over half. Over half of people are saying that the reason they are doing it, in part, is because they feel are feel a burden. That is a kind of internal pressure.

I thank the witnesses for their insightful statements and submissions. In his statement, Professor Jones said that to introduce a measure in Ireland would be a radical and unprecedented change if it enabled assisted dying. I agree that it would be radical and unprecedented. He went on to say that countries that have introduced assisted dying in some form have abandoned the principle of healthcare ethics and accepted that some lives are unworthy of life. That is a very strong statement. My genuine impression of the healthcare professionals and others with whom we have had the opportunity to discuss this issue both inside and outside the committee room is that they are very compassionate people who have an understanding and are trying to support those who are effectively making the decision themselves. I certainly would not accept that a decision is made that a person's life is unworthy. I want to make that point. I accept the point that there is a concern about a possible normalisation as time goes on.

Professor Madden spoke about the principle of respect for autonomy. People have different and unique perspectives on their autonomy and what they can withstand or withhold. That has to come into this. When talking about palliative care, one of our previous witnesses, Dr. Louise Campbell, said that denying access to assistance in dying can be unethical because it condemns some people to a worse death. We have to take that into consideration as well.

I have the research that Professor Jones referenced. The Irish Hospice Foundation gave us a copy of it. I have to say that it is a concern, and it is something society has to take on board, that 59% of people in Oregon basically made the decision because they felt they were a burden on family, friends and caregivers, and 7.4% were concerned about the financial implications of treatment. The figure for Canada was 34%. It is a concern and it is one that we have to take on board.

I have a question for the three witnesses. We have spoken previously about health workers having a right to conscientious objection in jurisdictions where assisted dying is legal.

Do the witnesses believe that where healthcare providers have an objection, there should be a legal onus on them to refer to another doctor or healthcare practitioner? That is, of course, in a situation where assisted dying was allowed here. Last week, a witness suggested that a new group of specialists be put in place and the matter would be its prerogative once a request was made. Would that be feasible?

Professor Mary Donnelly

To answer both the Senator's questions, I agree that, along the lines of the Health (Regulation of Termination of Pregnancy) Act 2018, there should be a duty of referral where a conscientious objection is recognised. I see that as an essential element. If, as my colleague Professor Madden said, the State recognises that, having done its due deliberations, individuals have a right to assisted dying, then the mechanisms to ensure that is delivered should be ensured.

I am a little more nervous about the notion of a specialist cohort. That is something one would have to discuss in much more detail with the medical profession. It is a really important operationalisation question. I certainly do not have the expertise to give a fair answer on that. I would be a little bit nervous about the notion of a specialist register in that context. I see it as something that would probably work better where individuals were treating their own patients, the people with whom they have had a relationship. That for me would be an ideal. Again, it is an operationalisation question rather than a "Do we legislate?" question. It is definitely something to talk about further but I could not give a fair and balanced answer on that.

Professor Deirdre Madden

I am not sure what I can add to what Professor Donnelly has said except to say that obviously where there is a specific right of conscientious objection, which we have seen being discussed in other jurisdictions as well as our own in recent years, those rights tend to be exceptional and quite narrowly drawn. If it is the case, as Professor Donnelly said, that as a result of the deliberations of the Oireachtas, legislation is enacted which gives people a right to seek assistance in dying, then the State would also have to operationalise the implementation of that right by, for example, ensuring that a doctor who has a conscientious objection that he or she seeks to exert would be obliged to refer the patient to somebody else who may be willing to provide the necessary prescription. However, that depends on the way in which the legislation is drawn.

Professor David Albert Jones

Conscientious objection for assisted dying takes different forms in different jurisdictions. I would recommend looking at what is happening in the United States. Of the various jurisdictions, the United States is the one which is most restrictive and is often put forward as one we should look to if we are to have assisted dying. It would be useful to look at what conscientious objection means in that context. Often, it does not involve a duty to refer.

I thank the witnesses for attending. On consent, it seems to be agreed across the board that it has to be voluntary and free of coercion and there has to be capacity to make decisions. There seems to be a general wariness in relation to advance care directives. The legislation that has been effective since April this year has notification requirements, in that there are people who a person is supposed to notify in advance of decisions being made. Has that happened in other jurisdictions? I know we are encroaching slightly on the international segment of what the committee will be discovering. Has that provision been made in other areas and, if so, what form did it take?

I have only one other question.

A speaker two weeks ago mentioned a cultural shift. Someone mentioned this morning, I forget who it was, suicide prevention campaigns. Have they been effective in other jurisdictions? Has there been less of an emphasis on them in other jurisdictions?

Professor David Albert Jones

I have lost track of the first question. In relation to notification-----

The first one was about who would be notified for advance directives.

Professor David Albert Jones

I will take the second one first. Suicide prevention is still a priority for all kinds of reasons. However if this is in place, it can cause problems for the implementation of suicide prevention among certain categories of people. Consider a scenario from Canada, for example, where someone with a terminal illness attempts suicide and ends up in the accident and emergency department. There have been cases where it has been suggested to people, who had not previously requested it, that they have medical assistance in dying. Other doctors who take a different view of what suicide prevention should mean in this context find it difficult to be consistent in relation to suicide prevention. There has been a controversy in Canada about how to operationalise suicide prevention among people who are eligible for assisted dying. I hope that makes sense.

It is important to look at what happens in terms of notification and how serious the implications of not doing so are. Places like Belgium, for example, have large-scale practices, some of which are within the law and some of which are outside the law and are simply not reported. Not only that, but when they are not reported there is a kind of acceptance of them and prosecutions do not happen. Lack of reporting is a problem in other jurisdictions, but we do at least have evidence for it in Belgium. There is a lack of reporting, which then does not lead to prosecutions because it is seen as a technicality.

Professor Mary Donnelly

I cannot give a straight answer on how many suicide prevention programmes there are and how effective they are. I want to address the point that Professor Jones has just made in relation to a person being offered assisted dying in a Canadian context. Both the New Zealand and the Victoria legislation make it clear that a doctor cannot initiate the conversation on assisted dying. That is something which is workable and can be addressed. Many of these issues are things that can be addressed. As I mentioned earlier, it is really important that we do not think about this in some kind of abstract sense, but actually about the measures we can take, if we consider them to be appropriate.

On the issue of modification, can I just check, does the Deputy mean notification when a person makes one that they tell people? Okay. In Ireland, the notification requirements are for enduring powers of attorney, EPA, not for advanced healthcare directives. There is actually no formal notification requirement for an advance healthcare directive. Obviously, one of the things which doctors will say to people and which the code of practice in advance healthcare directive would stress is that if people are making an advance healthcare directive there is no point in them keeping it in their bag at home. They have to inform people, but it is not a technical or formal requirement. That is not to say that it would not be within the realm of legislation to introduce a requirement, for example, that an assisted dying request should be informed, for example, to the Decision Support Service. At the moment, it is not a requirement but there are clear requirements for EPAs. That is a question we would have to consider. The question would be whether, if we were to do this, we would introduce some form of notification requirements. These are all safeguards that can be worked in.

Are there notification requirements in any other jurisdictions?

Professor Mary Donnelly

In the jurisdictions of the Netherlands and Belgium, to the best of my knowledge, no, but I cannot say for sure. I cannot give you a completely accurate answer in this regard. We are only talking about a small number of jurisdictions with such measures.

What is the age in Belgium and the Netherlands? It is 18 in other countries.

Professor Mary Donnelly

I think it goes down to 12 in the Netherlands and Belgium. Professor Jones will probably be able to correct me if I am wrong. There are, however, additional kinds of safeguards. They are different measures and there is a different level at 16, and different levels again, working down the age groups. Professor Jones may correct me in respect of those ages.

Professor David Albert Jones

There are no age requirements in Belgium but there is a competence requirement.

Professor Deirdre Madden

I might come in on the issue of the cultural shift that was mentioned, if that is okay.

Professor Deirdre Madden

There was a mention of cultural shifts and the normalisation of behaviours and so on. I will briefly make the point that ethics, including medical, professional and societal ethics, change all the time because of changing circumstances, new standards of behaviour, debates in society and so on. If we think back to 50 or 60 years ago, even in medical practice, informed consent was not the cultural norm. There was a lot of paternalism and shielding people from the truth about their diagnoses, illnesses, prognoses and so on. That has now shifted to become much more about truth-telling, empowering people to make decisions about their own healthcare and so on. Cultural shifts are not necessarily something to be feared or worried about. In fact, in many cases, they are a part of the changing and maturing of society.

I thank our guests for their opening statements and the supporting document. I find myself remarkably sympathetic to Professor Jones's argument in his supporting document and his recommendations. They made me think. I am mindful of the third Canadian report that sets out that in 2016, there were slightly north of 1,000 cases of assisted dying and by 2021, that was up to 10,000. I agree with the figures the professor shared earlier.

Building on what Professor Madden has just said, perhaps it is not so much that assisted dying has brought about the environment whereby there are increasing numbers availing of it. Perhaps the requirements and mores of society were moving towards bodily autonomy, and the respect and beneficence that is within medical circles and societies with human rights anyway, such that it was natural that once there was permission, people would exercise that right. I am in difficulty. I swing in and out of where that might be. There has been a widening of the framework when we look at the Canadian model, its legislation, the constitutional case and the challenges whereby there was a widening of eligibility and lessening of the safeguards, looking at it objectively. However, the question has not yet been put to the Irish Supreme Court in a very direct way. It may be that it is only a matter of time before there is a constitutional case if we do not put in a framework.

That brings me to the understanding of medical ethics and where they fit in. A legal framework would put in a context rather than allowing a permissive context. I tried to put an image on that in my head. Let us consider a situation whereby someone with a knife is going to cut into another person. If such a thing were to take place on a street corner or in a domestic violence situation, that is obviously a criminal offence. If it happens in a theatre in a hospital, it is a life-saving intervention. We would then consider the rightness or wrongness of that medical intervention, whether the relevant person has six or nine months to live, how that decision is arrived at and the ethics involved. I am not sure we can get into that space but we can put in frameworks. I tired to figure that through. I thought about the temporal matter, that is, how long we decide. How long should that period of time be? How do we support medical people who will be obliged to make those decisions?

Points were made about decision-makers, assisted decision supports and co-decision-makers. What happens if one of them is a conscientious objector? How do we legislate for all of that?

I think the horse has bolted. We are already in a place where society recognises that suffering should give rise to a choice as to how an individual is obliged to either stay in a place of suffering or not. I completely accept that palliative care and everything like that needs to be increased. However, we are already there. It is now about how we make it as safe as possible. We have a framework. At the moment, we do not allow assisted dying but we allow a refusal of nutrition and medical intervention. We allow all of that. I accept the passive aspect to that and questions about whether we do that or not. However, we are already in that place. What advice would the witnesses give the committee about how we find those threshold points? How are we challenged in that regard?

There is much more to be said. I need to have big conversations. I would value a reply on those points and the nuances involved.

Before I go to Professor Madden, I omitted to welcome Deputy Alan Farrell, who has been with us online since the beginning of the meeting. I acknowledge his presence.

Professor Deirdre Madden

One of the difficulties I have with this whole area is trying to maintain a logical, defensible and coherent distinction between what we already allow and support, and enable patients to make decisions in respect of, and assisted dying. As the committee has probably heard from other witnesses, we allow people to choose to turn off a ventilator or another life-prolonging technology. We allow an adult with a progressive neurological condition to refuse food and water if that is the only means by which the person can seek to bring about death. We respect somebody's refusal to have chemotherapy. We respect somebody's refusal to have a blood transfusion. We refuse all of these things for adults with capacity as long as they can understand the information they have been given. They can ask questions, reflect on their choices, discuss matters with whomever they wish and communicate their decision in their own time. The law allows all of those cases in which a person refuses medical treatment even though the consequences will be death. We allow drugs and sedatives that reduce pain and discomfort even if we know they speed up death. All proponents for assisted dying seek is the ability for people who are suffering to obtain a prescription for the same kind of medication, only this time to let them hasten the timing of their own death.

One of my favourite authors is Dr. Atul Gawande, who is a surgeon and patient safety advocate and now works in the Biden Administration. He has a book entitled Being Mortal: Medicine and What Matters in the End that I respectfully recommend the committee members read. In it, he states we are running up against the difficulty of maintaining a coherent, philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives, which we allow, and giving them the right to stop the natural internal processes that do so. Those incoherent distinctions do not make a lot of sense to patients or their families. They are also lacking in compassion for the small minority of people to whom this might apply. As my colleague, Professor Donnelly, said, the law can do or say whatever we want it to do or say. As a matter of policy, one of the jobs of the Oireachtas is to come up with the framework or the basis on which this should or should not be permitted, and the safeguards that could be built into the system, and the law will follow that course. It is not a matter of the law not being able to do A, B or C. The law can do whatever we want it to do. It is just a matter of terminology.

Professor David Albert Jones

If the Supreme Court said there was a requirement, then Parliament would have to act.

The Supreme Court did not say that in the Fleming case. In the United Kingdom, after the Pretty case, we had the Nicklinson case, in which the court said that this was an important topic but not one for the courts, that it was for the UK Parliament to consider and that if the UK Parliament did not consider it, the courts might step in. That was in 2015. Later in 2015, the UK Parliament considered it and voted against it and when the issue came back to the courts in the Conway case, they no longer said the UK Parliament should act, but rather that the UK Parliament had considered it. It is a possible answer to say we should stick with the present framework. If the Parliament decides that is the answer, the courts will respect that the Parliament has considered it - that is the essential thing - and decided on this as the safest course. This will be respected by the courts. At least that is the evidence from the United Kingdom.

Professor Mary Donnelly

I will first talk about the relationship between the courts and the Oireachtas. How the courts respond would depend on the question placed before the courts. Undoubtedly, consideration by the Oireachtas would be a relevant factor. I should point out that one of the reasons there has been an increase in numbers in Canada is further court interventions. The expansion of the scope of assisted dying in Canada was because of the involvement of the courts. The Supreme Court was quite sensible in the Fleming case in not seeing this as a matter for the courts and in leaving it to the Oireachtas to take responsibility for this kind of decision. These decisions are better made in a democratic, responsible and answerable forum. That does not take away the necessity for the Oireachtas to exercise its duty in that regard.

The other question is a fair one: how on earth do we balance all the sets of issues and how can it be done in legislation? The only example I can give is in respect of advanced healthcare directives in the Assisted Decision Making (Capacity) Act, which provided for the establishment of a committee, which I chaired, to develop a code of practice. The Oireachtas and the legislation should set out the fundamentals. That is something for which the Oireachtas is responsible. However, anything in this area needs to be cognisant of the people on the ground, including the clinicians who would operationalise this, individuals and their families, public representatives and representatives of people with disabilities. It would be almost impossible for the Oireachtas to set out a full framework. It would not be possible. The Oireachtas could set out high-level principles and the code would be subject to oversight and so on by the Oireachtas and the relevant Minister. It would have to happen on that kind of dual level. The Oireachtas could never put enough detail into statute to deal with all these questions. However, it can certainly set principles.

Before I move on to Deputy Gino Kenny, I acknowledge the presence of Deputy Costello online since the beginning of the meeting.

I thank everyone for their statements this morning. In respect of what we have heard in the past five weeks, different countries have different rules around assisted dying. A small number of countries have an assisted dying framework. They are different to a certain degree as regards criteria and who can avail of assisted dying. However, generally where it has worked, it has worked for those who want to avail of assisted dying.

My first question is for Professor Donnelly. The Assisted Decision Making (Capacity) Act was enacted a number of months ago. Has it made the issue of assisted dying less opaque with respect to capacity to a point that assisted dying could be legislated for?

Professor Mary Donnelly

Yes. The first thing to say is that although it is a 2015 Act, we are in the very early days of seeing how it operates in practice. We have limited data as to its operation in practice.

That is something we have to keep an eye on. Having an awareness of what is happening will be fundamental to any decision to legislate. We must know what is happening with that. However, we have greater clarity around certain things. We have a definition of capacity and our support mechanisms. There is a much clearer picture for us to think about how it should or should not translate into assisted dying. Were we to decide to introduce assisted dying, that does not mean it could simply translate as it is, that we could simply throw in a bit of assisted dying. That is not how it would work, but we have a greater level of clarity. As Professor Madden, I believe, pointed out, we now have measures to enable people to refuse treatment while they have capacity and measures under which people can say that they want to refuse treatment if they lose capacity. Whether we call it a culture shift or something else, these are all part of our legal culture. However, it will take a year or two at least to get a real feel for how these measures operate on the ground and how embedded they become. Certainly on paper we have a much clearer picture. They are all supplemented by detailed codes of practice provided by the Decision Support Service. There are levels of additional clarity. Again, we must watch these critically and see how they operate in practice. However, there is more clarity.

That legislation is thorough and progressive. It is revolutionary in some ways in relation to healthcare. Professor Madden touched on it. She put it eloquently when she spoke of people having control of their medical treatment. That gives clarity in that people could find themselves in a situation where they could refuse a medical intervention and so forth. That gives a sense of control. Why would society not allow a person who has capacity, has control over the decision and who has a limited time on this earth due to an illness to have control over a certain period of life? That is a question we are trying to figure out an answer to. I hope that in those circumstances, the person would have a choice. Why allow people to starve themselves to death? Why allow people to have awful deaths? That is not a civilised society. People should have a legal and medical right to say they want to choose how they die. That is a fundamental right.

Will Professor Madden answer the same question on the Assisted Decision-Making (Capacity) Act?

Professor Deirdre Madden

I probably cannot add to Professor Donnelly's expertise in assisted decision-making, other than to say issues around transparency, good governance, public reporting of accurate data and all those areas are hugely important to having trust in whatever system is devised, if one is devised, for assisted dying.

I would like to touch on the point Deputy Kenny made about the idea of a good death. It has been spoken about with various groups of people, including the Irish Hospice Foundation, over the years. When we talk about having a good death, we mean we want to not be in physical pain, to have an emotional reaction and psychological coping mechanisms to enable us to die in peace. We hope the impact of our death on our families will be eased by the gentle nature of our passing and that we will be able to work through whatever anxieties and worries we have and die on our own terms. We know - I am sure the committee will hear from people in this situation - that some people are afflicted with devastating illnesses. For them, life may become unbearable and they want nothing more than to have a peaceful death in the company of their families. In a small minority of cases that death is impossible without assistance from a life partner, family member or medical practitioner.

Even with skilled end-of-life care and all the advances in palliative care options we have had and that will hopefully continue to grow, a small number of people do experience a degree of suffering towards the end of their lives that they consider, not anybody else, can only be relieved by ending their own lives or at least knowing they have that option. Many people who seek prescriptions for aid in dying never exercise the option. The knowledge that they have that prescription in their bedside locker gives them comfort that they have control over their own passing at a time and in a place of their own choosing. Many do not actually use it but it provides a sense of control.

The most common concerns of patients choosing aid in dying, to my knowledge, are loss of autonomy, loss of dignity and decreased ability to participate in life activities. These are the things that we need to factor into this balance when we are talking about the framework we want to bring into existence. We need to strike a balance between the right to have assistance in dying, as an aspect of respect for the individual's right to life, of which I would say dying with dignity is a part, and the State's interest in protecting the principle of protecting potentially vulnerable members of society. It is entirely possible for the legal system to devise a process to identify those few people who would fall within that exception.

I thank Professor Madden.

I thank the witnesses for their contributions. Professor Madden said many people who seek prescriptions do not use them. Does she know of any figures on this? This might be a question for the international panel when we get to that stage.

Professor Deirdre Madden

There are certainly figures on it. I can send them on to the committee afterwards, if that would be helpful.

I ask Professor Jones to respond.

Professor David Albert Jones

It is 33%.

Gosh. That is-----

Professor Mary Donnelly

That is in Oregon, though, or in one of the-----

Professor David Albert Jones

Yes, that is in Oregon. That is the total.

Professor Mary Donnelly

I do not know if as much data are available in other places.

That is interesting. One third of people seeking these prescriptions do not go ahead and use them.

Professor David Albert Jones

For Exit International in Switzerland, it is more like 50%.

I thank the witnesses. I found that interesting when Professor Madden mentioned it.

Mention was also made of Canada and the process of introducing a measure to allow a person to give a advance waiver of final consent if they have lost capacity at that time. Nowhere else in the world currently has this process where it is possible to give a waiver in advance. I do not want to suppose. We have come a long way in advance healthcare and all these things. I was on the committee that dealt with elements of that. Will this approach become more commonplace? Anybody who wishes can answer this question. Will we see this mechanism whereby people can give advance waivers in situations where they may lose capacity applied in other jurisdictions where assisted dying is in place?

Professor Mary Donnelly

It will depend on the data. I am only aware of this coming through in Canada. It is less of an issue in the Netherlands and Belgium because those countries have advance decision-making in the bigger sense.

Professor Mary Donnelly

The Canadian issue has arisen because of this concern. It was because of advocacy undertaken by a particular individual and group in the context where people were saying they wanted to live longer and wanted to get the most out of their lives. I assume that if one is choosing to avail of assisted dying, one does not want to have to go early. That would be completely contrary to the whole idea. People were concerned that there was a risk they would lose capacity. The length of time between the initial request and the second request is important in this regard as well because the longer that time is, the greater the risk of losing capacity.

The short answer to the Senator's question is I do not know. If it became a sufficient problem, it might need to be addressed. I should say I am only aware of this mechanism in Canada and it does strike me as qualitatively different from the bigger question of whether we have advance refusals in this context. Again, the Canadian context is based on individual data. I will be watching and waiting to see what happens in this space. There is possibly something here that we do need to be concerned about but we must examine the data, which are absolutely essential.

It is wonderful that the committee is going to hear from international experts who have this experience. They will be able to talk to their expertise in this regard. It just struck me that if we did introduce assisted dying, it would be important for people to be facilitated to live for as long as they choose and not to be pushed into exercising assisted dying sooner than they would choose. This was why I wanted to bring this point up.

Is that okay?

Yes. I have one more short question.

Professor Jones has a comment.

Professor David Albert Jones

The law changed in the Netherlands because of a court case. There had been advance decisions for euthanasia but the assumption was that people would be unconscious. The question then arose of someone who had dementia. The person had euthanasia and had to be restrained in order to have the lethal injection. This caused anxiety. An advance decision was in place but this person did not have capacity at the time. The person had dementia but there was no other obvious problem with their life otherwise. The problem with using advance euthanasia decisions in respect of dementia, which is a concern many people have, concerns when to take the decision about when to have the euthanasia. This decision-making seems to rest with other people. Even though dementia is a real and visceral concern for people, this kind of legislation is extremely difficult to apply with regard to dementia. If it is applied, we find ourselves in situations where it looks very different from what we think of as voluntariness.

Mention was made that in the state of Victoria in Australia and in New Zealand a doctor cannot initiate the conversation on assisted dying. What are the consequences of that? Are there medical consequences?

I had not even thought about the issue of the difference between capacity in terms of being unconscious per se and whatever we might think of as being the other variations of that. In the example given, would patients themselves outline where the line would lie for them? I do not know about the jurisdiction being referred to. Is it that this must be figured out? I did not quite understand.

Professor David Albert Jones

It is difficult to know how one would frame that.

Professor David Albert Jones

Regarding the question of New Zealand and Victoria, there is quite a lot of push-back regarding Victoria. This is because other states in Australia which have legalised voluntary assisted dying, as they call it, have not had this mechanism and many people in Victoria are saying it inhibits freedom in this regard. Given what is happening in the rest of Australia, I would be very surprised if this restriction in Victoria was maintained beyond the next five years. If anyone wants a bet, I will put some money on it.

Professor Mary Donnelly

I cannot bet on whether Victoria will or will not retain that restriction. It would be one of the possibilities for us to consider for use here. The points made concerning making an advance refusal of treatment are fair. It is a difficult point to know and to set out clearly but not beyond the wit of legislators to give effect to.

One thing that would be absolutely essential were we to attempt to do this would be to ensure that any action by individuals after losing capacity which indicated that what was being done in this regard was not in accordance with their will and preference would be determinative. In other words, in my view, because of the importance of the will and preference of individuals, notwithstanding their lack of capacity, these aspects would have to be determinative in a situation like that and it would never be appropriate to do otherwise.

I do not deny that it would be challenging to draw up appropriate advanced assisted dying legislation, except, as I have said, there is that little example of the end of life - that short gap thing which I think is more deliverable and worth considering, although perhaps politicians might make the call that perhaps it is not appropriate.

Professor Deirdre Madden

I cannot really add anything useful to what Professor Donnelly has said. I agree with everything she has said in that regard.

I thank the witnesses for their presentations. My first question is for Professor Jones. I found the phrase "have accepted that some lives are unworthy of life" that Senator O'Loughlin picked up on to be quite problematic. It is quite stigmatising to people who have had to face difficult decisions. I am not a practising Catholic but nor would I consider myself to be an atheist as I have some quite spiritual beliefs. When I think of that phrase, I think of my father when he spoke to me about not wanting to live if he did not have his mind. If there had been a regulated system in Ireland, the reason we would have supported him in fulfilling that wish is because his life was so worthy to us; the complete opposite.

I refer to making a value claim that somehow, life in its existence is just for its existence, regardless of the suffering that somebody may be enduring at the end or that somehow, to make a decision to end that suffering is some sort of way of saying that person's life is not worthy. That is a very difficult decision for an individual and a family to make and they make it out of a sense of love and respect and respecting that person's autonomy and wishes. This brings me to ask how we come up with these ideas of what worth is. What is value? How do we decide that insisting that someone stays alive is what gives their life value or worth? Does Professor Jones's submission - it is completely okay if it does - comes down more to the idea of an objective truth for him in that God gives life and God takes it away and that all the conversations that we have around that do not really fit, because of the objective truth? For me it is about subjective psychological states in terms of how we perceive what our dignity is, what our worth is or even, as Professor Jones said, internal burden. I wonder whether our belief systems, whether they be religious, moral, ethical or just environmental given our circumstances, are all subjective psychological states rather than universal truths and that for some reason there is a universal truth that someone must stay alive for their life to be of value.

Professor David Albert Jones

I thank the Senator for her comments. I wrote this as an opening statement which I had to submit in advance. I did not actually say it when I gave my opening statement. I regret having written it. I understand how it might be upsetting. I do not know whether it can be struck out.

Professor David Albert Jones

The statement that I made verbally is what I would prefer to hold my view. This goes to something several people have said. It is really important to respect people's ability to refuse treatment and that is because of the importance of consent. Consent is about what we allow to be done to us. It applies at the end of life - it applies to the whole of life - and it applies to medical care in particular. If the doctor is going to do something to me, they need my consent to do so and I can refuse. I can refuse for good reasons or bad reasons. They are my reasons and the doctor is restrained by them. However, if the doctor wishes to give me treatment, he or she should give treatment that the doctor thinks is in my best interest.

That is why it is a different thing.

On occasion, can it be in a person's best interest to die if their condition is not going to change?

Professor David Albert Jones

If dying can be in their best interest, then it can be in their best interest even if they have not asked. That is a very big step.

Where we come to there is that consent is important, once it is in their best interest.

Professor David Albert Jones

Consent is a veto even if something is not in my best interest. It would be in my best interest to have this, but I am saying "No" and the doctor cannot impose it for something. However, if the doctor is going to give me something, the doctor should only give what the doctor agrees is in my best interest. That is why it is a very different-----

If they both agree, if the patient is consenting that he or she wants to be given something to hasten death in the moment-----

Professor David Albert Jones

That step would mean that we have started to say it is reasonable for a doctor in some circumstances to think that death is in the interest of the patient. If that decision is allowable, that decision logically also applies when the person cannot consent.

Not if the safeguards are built in. It would then hold in the previous conversation. If a person can give consent for the withholding of treatment, in that situation the doctor still knows that the person will die. He or she may still believe, "Oh God, that's not in the best interest of this person." Therefore, the two things are the same for me. The consent remains the same in both situations. The outcome also remains the same in both situations. Whether we give or do not give, the ultimate end is death. Sometimes if we hold beliefs, we really struggle with the idea that we can actively give someone something that will make them die today instead of in three weeks. Ultimately, the same thing is happening in all situations. The same applies with palliative care.

I have some questions for Professor Madden on the four principles that are set out, malfeasance and the idea of no harm. How is harm weighted? If we were to have a regulated system under which assisted dying was permitted, these four principles also seem to uphold that system in a sense. They are not in opposition to also having a regulated system on assisted dying.

Regarding doing no harm, I am sure some people would say that the harm is the removal of life. That is the harm: the person's life is gone and the person is dead. Is that principle related to the harm it causes the individual, society or the people around them? Ultimately the harm is removed from the person because the harm they were experiencing was the suffering, pain or whatever it may be at the end of their life. Is harm weighted towards the person who is no longer with us rather than towards the people who are around them who feel harmed by their absence?

Professor Deirdre Madden

Regarding best interest, which Professor Jones was speaking about, in Ireland as evidenced by the Assisted Decision-Making (Capacity) Act, we have moved away somewhat from looking at what a doctor might decide is in the patient's best interest. We are now trying to support individuals, themselves, to make decisions and have those decisions respected in accordance with their will, preferences, beliefs and values. It is how they choose to live their lives rather than what a doctor might consider to be in their best interest.

Regarding the point about harm which Senator Ruane just mentioned, for me the question of harm is a more subjective issue rather than an objective one. For many people who live in very severely compromised situations, towards the end of their lives they become much more concerned about maintaining their comfort, their quality of life and dignity rather than the length of their life or extending their lives.

Sometimes they reach a point, despite all the best efforts of everybody who is caring for them, at which they decide that the best life possible for them is sufficiently poor that it is worse than no further life at all so they decide to forego any further life-sustaining treatment, that is, medical interventions. There is no objectively correct point at which further treatment for all persons is no longer a benefit but is without value or meaning. For me, there is only the decision of a competent person about what that point means for them. Therefore on harm, it is a subjective determination and assessment for each individual to live his or her life and to end his or her life at a time of his or her own choosing.

Thank you. We will go to the second round. It is strictly four minutes per person and that is including the answers.

I want to clarify. I got mixed up with my dates at the start and I suggested that New Zealand had introduced euthanasia in some form in 2017. It was only in 2021. In Victoria it was 2019. I suppose it goes to the point that this is all very early there. I would put it to our speakers that it is so recent that there is really no telling whether safeguards put in actually work, whereas if one looks at Oregon, which is the challenging one, there is a relatively conservative law yet there is remarkable evidence of people feeling a burden. This is where I would come to Professor Madden and Professor Donnelly to some degree. I hope I am not being unfair to them but what I hear them saying is "Don't worry. You can put safeguards in place to prevent abuses" and that may or may not be true, as to whether those safeguards will hold or whether there will be abuses etc. What I am not getting any reassurances about, however, is that there will not be changes of attitude or that people will not come to feel a burden. If Professor Jones withdraws his words of life unworthy of life, we are nonetheless talking about a situation where the State will be saying to some people that the preservation of their life is less important to us than the preservation of other people's lives. That is why when Professor Madden effectively says not to worry about cultural shifts, it is as though she is inviting us not to worry if there is an increase, even a large increase, in the number of people who want their lives ended should the law change, because that is a change in attitudes and we should be kind of neutral about that. That is the concern that many people have because where does that leave people who come to see their life as a burden? Is that the cultural shift that people are happy with? There is no abuse involved or trickery but nonetheless, more people come to see their lives as a burden. Is that to be a cultural shift? I have to say I was surprised at Professor Madden's unwillingness to see a clear distinction between a person refusing treatment, which I thought would be a given that a person could do that, and a person not nonetheless being allowed to implicated somebody else in the termination of their lives. Surely Professor Madden's logic is that we should have no concern about preventing suicide in our society since we will allow a person to go on a hunger strike unimpeded. Is it not her logic, therefore, that if a person wants suicide for any reason, then he or she is entitled to the help of any other willing person in bringing that about?

Professor Deirdre Madden

First, on the obligation on the State to preserve life, I should not be taken as implying that there should not be any concerns about protection of vulnerable people. That is a given and that is why there should be safeguards in place. All necessary psychological supports, family supports, palliative care options, everything should be given to the person to try to enable him or her to live a life that for him or her is worth giving. But the point may come for a small minority of people, as I said a short while ago, when there is only so much that such people want to bear, there is only so much in terms of the dignity they are prepared to suffer in relation to the illness or condition they have. That is where the law should provide a framework to enable such people to make a choice about the manner and time at which they wish to pass. I do not think that is an inconsistency.

I do not think it is about people feeling they are a burden. It is more about feeling the loss of control, autonomy and dignity. That is where the law could focus its efforts. I do not think there is any inconsistency on that.

I just do not understand how Professor Madden could say it is just a small minority if she does not see a distinction between a person refusing treatment and a person being entitled to ask for help. I put it to both Professor Donnelly and Professor Madden, why do they believe we should just be talking about a small minority if they feel that people should have a right to have their lives ended?

We will go to Professor Donnelly on that.

Professor Mary Donnelly

We do not know what numbers would choose to use this. The numbers in New Zealand have been small so far. I have a memory of 66 but I cannot stand over that. The first point to note is that medicine has changed profoundly and the way life ends has changed profoundly. We talk about culture shifts but technology has changed dying profoundly. It is a very different kind of experience than it was in the days when pneumonia was considered the old man's friend and when people died in a much more technologically unsophisticated world which was in many ways bad but which also had a certain easing of passing. We live in a different world. Culture shifts are to some extent inevitable. There are many reasons people feel a burden and our job as a society and members' jobs as legislators, is to minimise people feeling themselves to be a burden and to maximise what is available to maximise their lives. Absolutely, these are concerns and they are real concerns but they are not necessarily addressed in the context of a little item of legislation on assisted dying. They are big; they are societal concerns. They are how we respect individuals whether they have disabilities or whether they are dying. They are incredibly important questions. Assisted dying is just one part of a much bigger question and much bigger picture.

Returning to societal change, I am still wondering did that change happen. Once we had progress in treatment and the identification of illness and we reached that stage, people live longer with illnesses that 30, 40 or 50 years ago might not have even been detected and someone would be at an advanced stage and close to death by the time it was identified. In that context, this may be symptomatic of a change that already happened and we are catching up. How many times have we been at funerals where someone says about someone whom he or she adored and about whose death he or she is heartbroken that the person's death was a relief? That is the context in which we are carrying this out and trying to find the pivotal point. Rather than us setting the point to bring about assisted dying, maybe the point has been set already and we are trying to set the safeguards because this is a natural progression when we are living in a time where there is a very different medical context. I wonder about the idea that somebody has the script and has the right to end their life if they wish because they have been given it, and that they do not exercise that right. Is that giving someone control in an otherwise very powerless situation? Therefore, the comfort of having control is something. We need to be careful about deductions from what that means, whether it is a change of heart or an empowering experience. I would value the witnesses' comments on that.

I call Professor Jones.

Professor David Albert Jones

First, on the people who do not use the prescription is in the context of assisted suicide, that is, legislation where you take it yourself and not in the context of where the doctor does it.

In the latter context, we do not get this. I would have to look up the numbers on that. I would be happy to give them to the Deputy but they are much smaller. When the doctor does it, there is not the issue of holding onto it.

Regarding the culture shift and how we cope with the good news that we are living longer while trying to find ways to live longer better, I think the same issues are behind more people asking about assisted dying. They are also the same pressures which, if we introduce it, will lead to it being used inappropriately. All of the same pressures which are behind more people asking about it are reasons for thinking that once it is introduced, people will feel now that it is there, it has changed things and they need to consider it.

The corollary of that is that in the identification, diagnosis, treatment and availability of it, someone is obliged to refuse that if they do not want to face suffering or do not want to face a future in which otherwise they may have had an accelerated death without all of these treatments. I am not sure we can draw a definitive conclusion from it. I take the point on the scripts where is it voluntary and one takes it oneself for one's assisted dying, versus it being done by a doctor. In that context, we need to consider the mental health empowerment that comes about from being able to exercise this choice. That might limit what we make available. Perhaps, as a committee, we could say that this is a valid consideration of the numbers here. That might put us in the sphere of saying that it should only be available when someone is able to take it himself or herself rather than being medically obliged or put on the person.

Professor Mary Donnelly

I would see that gap in numbers of people taking as a very positive sign. It is a sign that people have the reassurance they require and are making a choice to continue. I would see assisted dying as fitting within the model of living for as long as one can. I would see that as absolutely essential.

I want to talk briefly about Diane Pretty's case. She had motor neurone disease. The question was whether she would refuse treatment, which in her case was assistance with breathing, and die in that way, or whether she would have assisted dying, which would have enabled her to die in a way that she felt was more dignified. I am not saying that every assisted dying case is like that. However, for the individual to be able to live as long as possible, I would see that as something that is absolutely essential to work into any legislation we introduce. It is about living. Of course it is also about dying; I am not trying to finesse that but it is about living as well.

Dr. Jones's statement is quite extraordinary. It says that those countries that have introduced assisted dying undermine the very foundation of an egalitarian, civilised society. Is Dr. Jones saying that New Zealand and Spain and some states of the United States are uncivilised because they have introduced assisted dying?

Professor David Albert Jones

The special rapporteur on the rights of people with disabilities made that point in relation to Canada. I do not think so in other respects but I think in this respect it does. It means that a distinction is made between people for whom we are going to go the extra mile to try to prevent suicide and other people for whom we are going to facilitate them ending their lives. That is making a distinction between people. That is why I talk about egalitarianism.

I think Professor Jones's statement has crossed the Rubicon. It is obvious that he is diametrically opposed to assisted dying in any form and that is his prerogative. Regarding the unassisted suicide rates in the United States, where is his evidence for the statement that suicide rates have gone up in those states that have introduced assisted dying? As this is a serious allegation to make, he had better be able to back it up

Professor David Albert Jones

This is the paper by Professor Sourafel Girma and Professor David Paton in the European Economic Review. I can provide-----

Dr. Jones does not have it with him? Can he give me evidence now? If he is going to make a statement like that he had better be able to back it up.

Professor David Albert Jones

Professor David Paton is an economist from Nottingham. We looked at the statistics in 2015. On several tests, there was a suggestion that there was an increase but it was not statistically significant on our final test. Girma and Paton have gone back to the data now that more states have done this. They have used two different methods and they have found statistically significant rates of increase. There was a 6% increase in relation to suicide in general and a 14% increase in relation to suicide of women. Association is not the same as causality but there is an association, which is shown by a peer-reviewed paper.

I could show the doctor another piece of evidence that shows that is not true. I think it falls flat on its face if Professor Jones is saying that in countries where a framework for assisted dying has been put in place, suicide rates go up. I think that is very flimsy evidence, to say the least. I just do not buy it.

Those who are opposed to assisted dying always say that being a burden is one of the reasons why people have availed of assisted dying. Feeling burdened is a human emotion and it can be when people are coming towards the end of their lives. "Burden" could mean many things to different people. I think it is quite distasteful that those who oppose assisted dying try to use this to raise fears in people who are in the situation where they may feel that they are a burden to others. This is a perfectly legitimate human emotion at that time in a person's life. I think it is twisted in relation to this issue. I think it is unhelpful to the broader debate around assisted dying

Professor David Albert Jones

I am influenced by various people I have known who have spoken to me from the perspective of a disability. They have talked about the cost of their treatments and often feeling that they are a burden. They also spoke about find the extra burden they would feel if this was a possibility. People like Kevin Fitzpatrick and Dr. Nicholas Tonti-Filippini have expressed this in writing that from their own lived experience, they often find it difficult. Things like the cost of their treatment make it difficult for them to maintain a sense of their own worth or that life is worth carrying on with. This would just add to it, so I am drawing on the experience of other people

Before we move on, in the interest of fairness to expert witnesses who come before us, regarding the interpretation of statistics and facts, every one of us is perfectly entitled to our own opinion and is perfectly entitled to express and shove forward that opinion. In the same way, any person is 100% entitled to object to it and to be factually argumentative against it. I want to clarify that it is nothing personal by any person in this House. We are not questioning any expert witness on his or her bona fides or any such thing. We are accepting and debating the different viewpoints. That is all we're doing here today, in the interests of coming to a better conclusion at the end of our deliberations.

I have one question around conscientious objection, where in some jurisdictions - and correct me if I am wrong - a doctor is not required to refer someone on if there is a conscientious objection. Did I pick that up correctly? Did somebody say that?

Professor David Albert Jones

Yes, that is true in Oregon, California and most of the United States. It is partly because the United States has a different medical system, but that also goes to why it has the form of assisted dying it has. When one starts judging Oregon, one needs to see it in the context of America. It is a different kind of thing.

Under our current framework, I presume we would probably have to include that there would have to be a referral onwards. Within our own framework, if we were to include or not include that, would we then have to change other ways that medicine is done here?

Professor Mary Donnelly

It is a very fair point that Professor Jones has made on the specifics of the American situation. It is a very different kind of model in general. In our situation, if we decided to introduce a measure, or to legislate for a measure, to accept that our citizens were entitled to that measure, then we would be required to ensure that mechanisms were put in place to ensure that our citizens have access to that measure. There, one would have a Supreme Court case very quickly if individuals were unable to have equal access to what was established as something available under the law, and if one had inequality and essentially discrimination coming in there.

We are operating with very different models. I cannot envisage how one could do it without a referral obligation, but that is my personal view. I would see constitutional issues were we to attempt that.

The egalitarian state is a funny one. I do not think any of us live in egalitarian state, regardless of whether this was introduced or not. An egalitarian state would be equal with regard to race, gender and class. We would not have a class system if we had a truly egalitarian system.

We can aim for it.

That is right, we can aim for it. That would mean one could access euthanasia regardless of one's race or religion, and that would also be egalitarian in a sense, once people are given the same treatment.

Some are more equal than others.

I want to put this question to Professor Donnelly. I know we have gone back and forth on it in recent weeks, and it is this whole idea of the passive and active piece. I am still getting a bit stuck on the palliative piece, and the increasing of one's morphine. Is that considered to be indirect euthanasia?

Professor Mary Donnelly

Again, we are back to terminology. Some people would describe that as indirect euthanasia. One always has to look at who is using terminology and in what situation. We are back to the idea of intention and what is one's intention. Is it one's intention to end the person's life or ease their suffering? As I know the Senator has heard, it originated in Catholic doctrine, and it is very much accepted in the law. In a world without assisted dying, it is not a bad thing because the one thing one does not want is palliative care providers to be scared to provide pain relief. In this world that we live in, as in Ireland at the moment, whatever one calls it, it is something that I think we should have. I do not think we should be hauling our palliative care professionals up for providing this.

Palliative care professionals will no doubt know that the provision of certain kinds of diamorphine or whatever will end life more quickly. Again however, they can argue that they are there to ease pain. That is really important, so no matter what we do that is a space we do not want to go into changing.

No, I am not criticising that. I just struggle to see, in that there seems to be a thread of difference. With the removal of treatment we are saying that is somehow passive, but that the giving of morphine at particular rates and measurements is actually an active thing.

For me, it is more just what is either palpable for us to accept as "I am just relieving pain", rather than "This person will die in the next 30 minutes, and I will give this other treatment as euthanasia or assisted dying". For me, it is about which one is more humane. First, it has to be whatever the person considers to be the best option for them. I know if I was to think of myself in that situation, and having been with more than a few people in their last moments, administering morphine for days and days would sometimes leave someone in such an unconscious state, writhing in the bed and hallucinating. I ask if I would want that for myself, and maybe some people do. It is obviously a better option that none. Then would I want, if I had some sort of capacity, to communicate with my family, sing my last favourite song, tell them all I love them and then die within 30 minutes, instead of being so heavily morphined for days that I would not get those last valuable, beautiful moments conscious?

There is probably something really valuable to learn about life in those last conscious moments, when someone has to face death. Sometimes I think that making the distinction that the relief of pain with morphine is somehow seen as more superior to allowing those last moments to be as beautiful as life can give, given the conditions allowing for that. Is there really a difference between palliative care in terms of morphine being indirect euthanasia, and assisted dying, which is being given a different type of medicine where someone gives it to themselves, or are they ultimately the exact same thing?

Professor David Albert Jones

It is not only countries where it is illegal that make this distinction. In countries where euthanasia or assisted dying of some kind is legal, they also make this distinction. There are reporting structures, which are for assisted dying, but they are not for this. They still make this distinction. The distinction between palliative care and assisted dying is one that is upheld by all jurisdictions, in both those where it is legal, and those where it is illegal.

On a medical point, it is not the case that giving morphine inevitably shortens life. The evidence base for this is very weak. Generally, pain shortens one's life, and appropriately-given pain relief does not shorten one's life. Sometimes it lengthens it, sometimes it shortens it a bit, but there is no consistency.

The right dose of morphine will put ease in your life.

Professor David Albert Jones

It is important to say that within palliative care there are doctors who are, with respect to the law, reluctant to give pain relief because they think it will inevitably shorten life. It is medically not the case that giving opiates titrated appropriately to pain relief shortens life. It is a kind of myth.

Would Professor Jones not say that some doctors suggest morphine and know that it will hasten end of life? I have been in those conversations, so I am very much aware of what happens in a room. We could have extended my father's life for three weeks had we brought him to hospital but we very much were assured that if we gave him this pain relief, and we just gave him the morphine, it would be much quicker for him than unnecessarily bringing him to a hospital. I have been in those conversations. There is no point in saying that morphine does not hasten death. It does if it is given at the right dose.

Professor David Albert Jones

If the committee is interested, I can give evidence on this. People I know in palliative care often get quite agitated about this. It is a common example that people give for double effect, but it is not actually good practice with regard to palliative care. It need not shorten life. In getting the same amount of adequate symptom relief, one can get as good or better symptom relief from opiates with no shortening of life.

I want to bring in Professor Madden to conclude on this.

Professor Deirdre Madden

On that point, obviously I am not a medical doctor but I also take the view that there are analgesic prescriptions that hasten death by causing respiratory depression. That is sometimes necessary to relieve the patient's pain. It is something that is recognised by various documents from the WHO, for example.

When a doctor is prescribing these kinds of analgesic, the death of the patient, we are always told, is an unintended but foreseen side-effect and, therefore, it is ethically permissible. The doctor has clearly reached the conclusion in those circumstances that death is an acceptable outcome for this patient in these circumstances, so even though death may not be the principal purpose of the prescription of the drugs, the doctor must have decided that the patient's interest in pain relief now outweighs the patient's interest in continued life. The doctor is, therefore, accepting that death is an acceptable outcome for the patient. Obviously, there are all sorts of arguments about distinguishing it from euthanasia or assisted suicide based on the intention of the doctor being to sedate, and not to kill, in order to relieve pain. However, from a practical perspective, as to what is the doctor's intention, level of foresight and knowledge, the doctor accepts that the patient's interest in pain relief outweighs his or her interest in continued life and that death is an acceptable outcome for this patient in the circumstances. Otherwise, the doctor would not give the drug.

I thank Professor Madden. On behalf of members and the secretariat, I thank Professor Deirdre Madden, Professor Mary Donnelly and Professor David Albert Jones for attending today and engaging with the committee. They have given us much food for thought. We appreciate their expertise, time and consideration. The next module of work of the joint committee will examine assisted dying in other jurisdictions.

The joint committee adjourned at 1.06 p.m. until 10.30 a.m. on Tuesday, 26 September 2023.
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