Right to Die with Dignity: Discussion

The purpose of the meeting is to begin the joint committee's consideration of the very important subject of the right to die with dignity. On behalf of the committee, I welcome from Right to Die Ireland Mr. Tom Curran and Mr. Michael Nugent and from the Irish Association for Palliative Care, Dr. Regina McQuillan, consultant physician in palliative medicine. I thank all of them for their attendance and furnishing members with their respective contributions. Both groups will be invited to make an opening statement which will be followed by a question and answer session with members.

Witnesses are protected by absolute privilege in respect of the evidence they are to give to the committee. If, however, they are directed by it to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or an entity by name or in such a way as to make him, her or it identifiable.

Members of the committee should be aware that under the salient rulings of the Chair, they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable.

I invite Mr. Curran to make his opening statement.

Mr. Tom Curran

I have a brief statement, after which I will be more than prepared to answer whatever questions members have.

Some people want to eke out every

second of life, no matter how grim

And that is their right.

Some people don't

And that should be their right.

That is a quote from the 1990s from the American journalist Betty Rolland after she was diagnosed with incurable cancer. To me, it sums up what the right to die is all about - it is about choice. It is about the ability to make decisions about one's own end-of-life situation to avoid a prolonged, painful and distressing death. It is commonly accepted that people have the right to live their life as they choose, provided they do not do anyone else harm; why, therefore, should a person not have the right to make decisions about the manner of their own death?

Most people I know who are involved in the right to die movement around the world are involved from personal experience. They have either witnessed someone they loved go through a bad death, or else they or someone they love are facing the prospect of a bad death. I am no exception to this rule. The person I loved, Marie, suffered from multiple sclerosis. Many years ago, when it moved from relapsing-remitting to progressive and she saw that it was taking more and more control of her life and her ability to live, she decided that it was not going to take control of her death. She knew that she faced the likelihood of a prolonged and, possibly, painful death and, being the strong willed person she was, was not prepared to let that happen. She did not want to die. Far from it, she wanted to live. She was never suicidal, but she did not want a bad death. When she explained to me what her wish was, it seemed like the most natural thing to want. It was only then that we discovered what she wanted would by no means be easy to achieve.

As I had done voluntary work in the area of suicide prevention for many years, I was aware that suicide had been decriminalised in Ireland in the early 1990s. This meant that taking her own life was not an issue. The problem was how to provide for a peaceful and painless death for oneself. Most of the irrational suicides that take place are performed in some horrific manner, but that would have completely defeated the purpose of what Marie wanted to achieve. That brings up the question of if it is legal for a rational person to take his or her own life, why is assisting a person to do something that is legal a crime and why is assistance necessary? I cannot answer the first question of why assisting someone to do something that is legal is a crime, but the second question of why assistance is required can be answered.

There are two basic reasons assistance is necessary. The first has to do with the method of providing a peaceful, painless death for oneself. That is not as easy as it may seem. There is almost nothing sold anywhere, either by prescription or over the counter, that will achieve that aim. Of course, there are many substances that will kill but not peacefully and painlessly. Any substance that will provide a peaceful and painless death is almost exclusively in the hands of those in the medical profession, but providing such a substance would be classified as assisting a suicide and, therefore, against the law.

The second reason is that in most cases the reason for making the decision to die is that the person is suffering from a progressive and, possibly, incurable disease which will eventually make it physical impossible for him or her to end his or her own life. In these circumstances denying a person access to something that is legal and available to any able-bodied person must amount to discrimination.

Let me try to explain why the right to die has recently become an issue around the world. The first reason is the advancement of medical science which has meant that in most parts of the world people are living to a much greater age than they could have imagined many years ago, but this brings its own problems. With living longer comes the likelihood that we will spend the final years of our lives suffering from a disabling illness which will usually mean that the final years of life will be far from comfortable. In addition, in the early to mid-20th century people started to think for themselves; the civil rights movement sprang up around the world and in many areas people were looking for personal freedoms, of which the right to die was one. People decided that death which used to be very much a family affair had become a medical procedure. This is borne out in Ireland where over 80% of people wish to die at home but less than 20% do. In fact, over 50% die in acute hospitals, in many cases in multiple-bed wards. This has made the process of dying clinical, not the celebration of life it used to be. This made people question why they had very little say in the way they would die and the right to die movement was born. It has resulted in a slow but progressive acceptance that rational people should have the decision-making power when it comes to deciding how they will die.

There have been the usual arguments against allowing a person to decide for himself or herself. They include religion, the danger posed to vulnerable persons and the co-operation of the medical profession.

These arguments are easily countered and this has been done in several parts of the world.

Getting back to the position in Ireland, the committee is probably aware that Ms Marie Fleming and I took a constitutional challenge to the law on assisted suicide. Some very interesting points were made in the summing up in the High Court. Let me outline a few of them here. Apart from stating that Marie was one on the most remarkable witnesses to ever come before the court, it upheld the fact that Marie was being discriminated against by her multiple sclerosis preventing her having access to something that any rational able-bodied person has. To right this wrong, the only option that the High Court has is to declare the law which allows this discrimination is unconstitutional and the law must be struck out. It is not in its powers to amend a law. The court stated that on a proportionality basis, it was not prepared to strike out the law, as without any law, vulnerable people would be open to abuse. I agree completely with this decision but it followed up by stating there is nothing preventing the Oireachtas from enacting a law that would allow for assisted dying for people like Marie and at the same time protect the vulnerable. None of the parties has had the courage to tackle this and the closest we have got is the presentation of a Private Members' Bill, drafted by me with the help of four barristers, and put before Parliament by Deputy John Halligan. This Bill has since been withdrawn so we are no closer to providing this civil right to people than we were then.

The other interesting point of come out of the High Court was the statement in the summing up that if the court could provide a law specifically for Marie, it would do so. This was an extraordinary statement. It felt that Marie satisfied whatever criteria seen as necessary to be allowed an assisted death. Marie was an exceptional person but there was nothing exceptional in what she was asking, and certainly nothing that would suggest that other people would not satisfy the same criteria. Why, therefore, have we still got the situation that if Marie can satisfy the highest court in Ireland that she should qualify for an assisted death, this right is still denied to others?

Dr. Regina McQuillan

My opening statement has already been distributed to members so I will just go through some of the highlights because I probably cannot read as clearly as Mr. Curran. Palliative care is care for people with progressive fatal illnesses, or life-limiting illnesses. Palliative care is involved with trying to improve the quality of life of people living with life-limiting illnesses. Since 2002 the World Health Organization has recognised that early palliative care is beneficial to patients and a recent research study done on lung cancer indicates that people with early palliative care not only had better pain control and symptom management but they had less chemotherapy and lived longer with such early palliative care. There is much to be said in favour of early palliative care for people with life-limiting illness.

The IAPC is a membership organisation working to support people working in palliative care in Ireland. We work very closely with the All-Ireland Institute for Hospice and Palliative Care and with the national clinical programme for palliative care. We support the work of that programme. We welcome the recent launch by the Minister, Deputy Simon Harris, of the palliative care three-year development framework. As we are involved with the care of people with life-limiting illness, we are very much aware of the need to see where the patient wishes are and we very much respect the right of a patient to choose treatment. We respect that people may choose to have particular types of treatment or refuse particular treatment. One area of concern is that patients might think they would be forced to have treatment that is inappropriate, against their wishes or, ultimately, futile. The IAPC very much recognises the right of people to refuse treatment and it also recognises the right of people to have an advance care plan and state in advance what treatment they want when they are no longer competent. As the Assisted Decision Making (Capacity) Act 2015 is commenced in full, the IAPC will support its members in having the right to appropriate education and training so we can assist patients in this respect.

The IAPC also recognises that people may consider where they want to die. Currently, 43% of people die in acute hospitals but there are interesting statistics concerning where people wish to die; as they become less well, people are more likely not to want to die at home but in hospices. Currently there is insufficient hospice care to provide that type of support. Recent research with which I was involved has indicated that for people with serious illness, 17% would have seen home as their least favourite place to die as they felt they would not be able to get appropriate care, causing more stress for families.

A big part of palliative care is the treatment of symptoms such as pain. In the palliative care specialty we recognise it is always possible to treat symptoms and we hope to either reduce or eliminate those symptoms. Palliative care requires input from different disciplines within the regular multidisciplinary team, and it also requires input from other specialists, such as radiotherapists or intervention pain specialists. Patients may have intractable symptoms, such as agitated delirium where there is difficulty in thinking clearly, or have poor concentration and cannot make sense of the world. Delirium is a very common complication of serious illness. When patients have delirium, we hope to be able to reverse it by reversing the cause. Sometimes in such cases, or in other cases where patients may have intractable distress, it may be necessary to give medication that would cause sedation. The idea is to relieve the distress of the patient by causing sedation; the end point is not sedation or the death of the patient. We are very much aware that both the Irish Medical Council and the Nursing and Midwifery Board of Ireland would state that health care professionals have a right when patients are dying to ensure they die with dignity.

We are aware there are some symptoms where we must make further progress in development. This includes symptoms like fatigue, breathlessness, anorexia and weight loss. These are important areas for patients and we should be making further progress in this respect. The IAPC recognises very much the patient idea of personal autonomy but we are aware that autonomy, as such, is qualified as we are all members of a society. We are aware patients have their own self-worth and palliative care is very much focused on patient-centred care and what is important for the patient. Individual autonomy is not absolute and our concern is that if assisted suicide or euthanasia is legalised, it will put pressure on vulnerable people. In Marie Fleming's High Court case, the court mentioned the aged, the disabled, the poor, the unwanted, the rejected, the lonely, the impulsive, the financially compromised and emotionally vulnerable, who may elect to hasten death rather than avoid a sense of being a burden to a family or society.

There are many vulnerable people in our society and although there are safeguards in place, they do not work. The National Safeguarding Committee last year indicated that 8,000 cases of abuse are reported to the Health Service Executive, HSE, across all ages and types of disability. Research has also been done indicating that half the population witnessed the abuse of an adult, either themselves or somebody else. There is much abuse in Ireland against people who are vulnerable and our concern is that it is not possible to protect vulnerable people. Recent research and studies have indicated that in countries with assisted suicide or euthanasia, the protections are not as secure as may be portrayed. The British Medical Journal recently demonstrated some failures in the Dutch regulatory system and concerns have been expressed by the Swiss Medical Association about the extension of euthanasia in Switzerland to people with depression. In Belgium there is conflict between some of those in favour of euthanasia and a particular psychiatrist about how she assesses patients and encourages them to have euthanasia while undermining the second opinion system. A recent study from Australia considered gender matters relating to assisted suicide and euthanasia. Women are much more likely to have assisted suicide and euthanasia because they live longer but are less likely to have social supports. It is interesting that where there are mercy killings outside the judicial regulation, it is much more likely to be male family members killing women in their own family.

I recognise Mr. Curran's comments on the change in legislation as it relates to suicide. Suicide was decriminalised not because this society believes suicide is a good idea but rather because society recognises that people who survive a suicide attempt need treatment and support rather than prosecution. Suicide is still considered to be a blight on society. We represent health care professionals with daily experience of caring for people with life-limiting illness and we recognise some of these people are vulnerable, either as a result of their illness or other factors. There should not be a change in the law as a change would put vulnerable people at risk. It is not possible to put adequate safeguards in place. The drive to improve care for people with life-limiting illness by education, service development and research may be compromised because we are all part of society and personal autonomy is not absolute.

We feel that allowing assisted suicide would devalue the lives of those who are open to this against those who are targeting suicide prevention campaigns. We very much believe that part of palliative care is helping people live and die with dignity.

I thank Dr. McQuillan. Could our guests check their phones because the interference is most likely coming through a live microphone rather than those that are silent? I thank both our contributors. I understand we are being joined by other members of the group who have just arrived. They are very welcome. Heavy traffic and all that goes with it is the cause of the delay. I will open up the meeting to members. The first speaker who has indicated she would like to engage with our guests is Deputy Clare Daly.

I thank everybody for their attendance. I apologise as these are challenging times for the Department of Justice and Equality so I will have to pop out but I will come back in. I mean no disrespect to the witnesses. I will follow the proceedings in the Official Report if I am not able to remain for all the responses.

I found all of the presentations incredibly useful. I acknowledge the role of Deputy Jonathan O'Brien, who is not a committee member anymore, who strongly pushed that this would be a project that the committee would take on board. The contributions of the witnesses have strengthened and validated the reasons why we need to do this. The case of Marie Fleming in particular touched people the length and breadth of the country. From a personal point of view the right to die at a time or in a manner of one's own choosing is something I found to be an incredibly compelling argument. The challenge for us is to balance that with any unintended consequences from legislation. That is one of the issues I wish to explore. One argument against assisted dying is that if we legislate, then the right to die could turn into an obligation to die in particular in this neoliberal climate where we do not always take the best care of people and when we talk about cost effectiveness when we should be talking about human beings and their right to live, and die, with dignity.

The issue is that people might feel a pressure to choose to die. The Irish Association for Palliative Care has stated it is a cultural acceptance whereby people feel they are a burden on a family or their care is costing too much or health insurance costs too much. How could we avoid that coming to pass? What rules could we put in place? What kind of system would be best to overcome that unintended consequence? Another issue is the objections of some of the disability groups globally arguing that it devalues the lives of people who have disabilities. How do other jurisdictions deal with that issue? Perhaps it is something people cannot address.

Dr. McQuillan referred to the safeguards in other jurisdictions as not being sufficient. In terms of elder abuse, is it not the case that people are helped to die against their will at present, when we do not have legislation to allow people to die with dignity? The problem is not really whether we legislate or not because that is poor behaviour and should never be tolerated but it is different to a rational adult making a decision about his or her own future and having the right to die. I do not know whether I explained that well. The problem is not legislation. I do not think there is any argument against legislation. The arguments are overwhelming as to why somebody should be allowed to decide if he or she wants to die. The only problem is an unintended consequence. I think we could overcome that.

Perhaps Dr. McQuillan would like to respond first to Deputy Daly's points, and then Mr. Curran can contribute. If Mr. Nugent wishes to respond then he can also do so.

Dr. Regina McQuillan

I will go through Deputy Daly's points but I may have missed some of them. They related to protecting vulnerable people, being a burden, devaluing life and what other countries have done. Unfortunately, what other countries have done has not been effective. That is very clear. Oregon is the US state which has had assisted suicide for the longest period and there is a gradual increase in the number of people who are dying by assisted suicide there. Interestingly, there is also an increased rate of suicide among the regular population. There is an argument as to whether allowing assisted suicide then means that suicide is more culturally acceptable. In Oregon the percentage of people who look for assisted suicide on the grounds of not wanting to be a burden has gradually increased over the years. One of the factors in assisted suicide there is fear of being a burden. Initially the legislation there was for people who had a prognosis of less than six months. It is clear that sometimes people get such prognoses but may live for many months if not years afterwards. There is a difficulty about the prognostication and how one knows how long somebody is going to live. In Oregon there was a call to extend the period of time from six to 12 months.

In the Netherlands, there probably are greater concerns because there is a long practice of allowing assisted suicide and euthanasia involving decriminalisation rather than legislation. There is an incidence of non-voluntary euthanasia in the Netherlands, as well as voluntary euthanasia, and there is also euthanasia of people with dementia who have not made advanced care plans. Those case reports exist in the Netherlands. It is clear that it is not possible to protect people there. Similarly in Belgium where there is legislation in respect of euthanasia, but again, that is extending so there is euthanasia for people with particular illnesses, but also people who are deaf or going blind have euthanasia, as well as those who are tired of life. Although many of those jurisdictions require that people are assessed and treated for depression, that does not always happen or does not always happen effectively. I do not think it is possible to protect people and that one will change society by introducing such legislation. One would change society in a number of ways. First, by saying that suicide is not such a concern to society as it currently is. We can campaign against suicide but if we say some suicides should be allowed then we are saying that suicide is not as much of a concern to society as it should be.

People who are living with disability live in very difficult times and in very difficult situations. In some situations assisted suicide or dying is promoted with regard to people who are terminally ill and people who have disability. This is a severe threat to people who are living with disability. Those can be people who have physical disability but it is more of a threat to those who do not have physical disability. I think allowing assisted suicide changes society.

Another way that allowing assisted suicide brings about a change is that it changes the idea of what health care is. Mr. Curran mentioned that doctors are the only people with access to medication. A very interesting paper was published about 20 years ago by an ethicist in the UK entitled Two lawyers and a technician. Her view was that assisted suicide and euthanasia should not be part of health care because it is not about care. It is something entirely different. Her argument was that there should be two lawyers looking at competency and a technician who is vocationally trained for this purpose. That was a different way to remove the idea of assisted suicide and euthanasia from health care. I do think this should never be part of health care. It is an undermining of what health care should be and is all about. I am not too sure whether I have covered all of Deputy Daly’s points.

If Deputy Daly wishes to come back with a supplementary question that is fine.

Mr. Tom Curran

First, I would like to mention palliative care. To me, it is probably one of the best disciplines in medicine that exists. It is the only discipline as far as I know in medicine that accepts a person is going to die. Unfortunately, we do not put enough effort into palliative care in Ireland. I am part of the All Ireland Institute of Hospice and Palliative Care and I work a lot within palliative care. I fully accept the need for it and the fact that it is far from ideal. Palliative care is for people who want to eke out every second of life. However, there are people who want to have palliative care but still want to have a choice at the end of their life. Palliative care is wonderful. Marie had palliative care for many years and there is no doubt that it made her life far better than it would have been if she did not have access to it. I have, however, come across hundreds of people who, like Marie, had a particular concept.

They have the same idea that at a particular point, their lives are not worth living. Anybody should have the right to say that. It is only the individual who can make that decision. While one can say a toothache is very difficult, it is only the individual who can decide, not what he or she is capable of, but what he or she is prepared to tolerate. What right have we to say to them that they should continue to live in that discomfort and pain past the point where they find it unacceptable?

Dr. McQuillan referred to doctors and the medical side. I agree completely that it should not be part of health care. It should be taken away from doctors. Currently, doctors have exclusive access to providing a peaceful death. I did not say that was right or that I agreed with it. In fact, I said I thought it was wrong. In Switzerland, lay people are involved in providing peaceful deaths. Dignitas is run by two barristers who are not medical people. Rather, they get medical people to provide the prescriptions. On the idea of safeguards, we can certainly point to places like Holland where the position is certainly not ideal. Certainly, I have no interest in bringing in a regime like the one that exists in Holland into Ireland. It is far too liberal. I am not saying I am not liberal in my thoughts, but as far as assisted dying and voluntary euthanasia are concerned, Holland and Belgium go way beyond what I would like to see. It is very likely with their regimes that it will be very difficult to control access to it.

In places like Oregon it is of course the case that more people are availing of it. If one starts from a position where it does not exist, there will be a phenomenal increase. One thing that is very clear and that people opposed to assisted dying never say is that the death rate has never gone up. The same number of people are dying. What is different is that people are not suffering. People may be dying a bit earlier than they would have otherwise, but they are not suffering when they are dying. The same number of people are dying and the same people are dying but they are just dying in a different way and when they decide to. The same applies in Canada. One of the advantages of being able to look at other places and to find out what is wrong with them is that we are not pioneering this. We will not be the first to do it if we ever get around to doing it. We can learn from the mistakes that other people have made. It is not even necessarily that there are mistakes, but it may be that we do not agree with the way they do it. Oregon is one of the best examples.

Canada has just recently introduced assisted dying. Canada is regarded around the world as one of the safest countries as far as legislation is concerned. In fact, the Canadian courts ruled that Canada's assisted dying law was unconstitutional. If that decision had been made before Marie and I went to court, we would have had a different outcome in the High Court here. That would have been the example for us because the Canadian constitution is very similar to ours in respect of individual rights. Our courts would have gone along with the idea. In fact, the Canadian courts were going through the same process when Marie went to court, but Marie did not have the time to wait around, as is obvious now that it is coming up to four years since she died. Safeguards can be put in place. Of course, no system is going to be foolproof. Abuse goes on all the time. Dr. McQuillan referred to the abuse of the elderly. That is against the law but it does not stop it from happening. There will be people who take advantage of others. However, it should not mean we deny access to a civil right to everyone else.

Mr. Michael Nugent

I wish to address two aspects of this issue which are not often addressed, one of which is unintended consequences. There is an unintended consequence of the current situation which is that it brings the law into disrepute. That is because rational, terminally-ill people who fully support the law have their own ethical priorities when they are dying. They will simply not comply with a law which causes them to undergo unnecessary suffering. My late wife, Anne Holliday, died of cancer a few years ago. Some of the members might know her as she used to work in Leinster House. She also worked in the office of the Tánaiste. Certainly, some of the members' longer serving colleagues will have known her. Anne supported the law completely and she dedicated her life to campaigning for democracy and respect for the law. When she was dying, however, she understood that she did not want to experience unnecessary suffering. In her mind, her right to avoid that was more important than respecting an unjust law which was causing people to suffer unnecessarily.

The second point of which most people are unaware is that many people - in some cases and places, it is most people - decide not only that they want to avail of the right to assisted dying, they actually make the preparations and put in place the ability to do it. Anne did that and I was prepared to assist her even though it would have been breaking the law and even though I strongly support the law in principle. Anne died naturally, as do most people who make these preparations. It is not about the act of dying, it is about the peace of mind one has while one is still alive of knowing one can avoid unnecessary suffering at the end if one has to. Once we had made those preparations, Anne's quality of life soared for its remainder. She had a quality of life that she would not have had if she had not made those preparations. We should not have had to try to find the information on our own; it is a process which should be regulated by law in a proper democratic society. In Marie's case, the courts have said that it is possible for the Oireachtas to find a balance that would put the necessary safeguards in place. The courts have told the Oireachtas that they cannot do it; it is up to the Legislature.

Deputy Daly has had to go out but she has indicated that she will be back. We appreciate witnesses' replies. I call Deputy Colm Brophy.

I thank the witnesses for attending today. I acknowledge that the opinions they have provided are held very strongly and that the witnesses believe firmly in what they are advocating. I want to come to something Dr. McQuillan said and tease it out with her. Is it the view of the Irish Association for Palliative Care that in no circumstances should there be a right to die? Is there not a conflict in that with Dr. McQuillan's stated position on the right of a patient to refuse medical treatment? If one endorses the right of a patient to refuse medical treatment, is one not, in effect, endorsing the right of that patient to choose to die? The process by which one is endorsing that right is a very painful one for that patient. I am not trying to trip anyone up on this. I respect everyone's views. However, I am wondering how Dr. McQuillan reconciles those two points.

Dr. Regina McQuillan

Deputy Brophy said that if a person refuses medical treatment, he or she will have a very painful death. That is not true. There is a great deal of mythology around how people would die. Most people I care for have a peaceful death. What most people want is not to die now. They want to live longer and better. Refusing medical treatment or life prolonging treatment does not mean one will have a painful death. I want to reassure those present about that.

There is a difference between the two positions referred to. People are not obliged to keep living as long as possible or to take treatment. Patients who are rational and can make up their own minds can decide what they want or do not want. That can be something as simple as not taking an antibiotic where it is recommended by a GP or it can be something much more complex such as deciding not to go to an intensive care unit for ventilation. People can refuse this. If a person knows the consequences of treatment and they make a clear decision, he or she is entitled to do that. People are also entitled to make an advance care plan about what treatment they want into the future. Advance care plans will be more regulated with the implementation of the Assisted Decision-Making (Capacity) Act.

Making a decision that would lead to death is not the same as requiring other people to provide assistance in dying either through assisted suicide or euthanasia. There is a difference between people being able to make a choice about what they want to do for themselves and making choices and engaging other people in things. The autonomy of the person is involved and also the autonomy of family members and health care staff. It is a debate that comes up at different points. It is very well recognised in health care that patients have a right to refuse treatment. We support the right of patients to refuse treatment and we will continue to support that right. I do not think there is any contradiction in the fact we would not support a change in the law to allow for assisted suicide or euthanasia.

The right of a patient to refuse treatment, which in a number of instances will lead to a more painful death, is an issue. Everybody has personal experiences and knowledge of such things. Medication for pain is a key part of palliative care for many people. The removal of that particular aspect would cause a person more pain and distress. If we respect the right to refuse treatment as an absolute, how is there not an automatic right to choice in such circumstances? Is that a unanimous view of people involved in palliative care? A number of professionals in the palliative care area who I have known over many years indicate a different view from the one Dr. McQuillan is advocating.

Dr. Regina McQuillan

When people refuse medical care, they are refusing aspects of medical care. Patients might decide to refuse antibiotics or ventilation but that does not mean they will refuse all medical care. Patients can pick and choose which bits of medical care they want. Patients may refuse medical care but opt to have pain relief, management of breathlessness or management of nausea. It is not a case that because they refuse, they are abandoned with no care. There are some patients who will refuse pain relief. Sometimes that is driven by different beliefs. It can be very difficult for me, as a palliative care doctor, if I am looking after somebody who refuses pain relief. Sometimes the refusal is on interesting religious or cultural grounds. I would never not treat somebody who is not taking the treatment I am offering. I would continue to support them.

I am here on behalf of the Irish Association for Palliative Care, IAPC, which a number of years ago produced a statement on voluntary euthanasia. As an organisation, the IAPC is opposed to voluntary euthanasia. It is involved in a consultation process about assisted suicide but our members are opposed to assisted suicide. I am also a member of the Irish Palliative Medicine Consultants' Association, which is the association of all the consultants in palliative medicine, and we are opposed to assisted suicide and have issued a statement on it. I am speaking as a spokesperson of the organisation; I am not saying I am speaking for absolutely everybody who works in palliative care. If one does a survey around the world, one will find that health care professionals in general are opposed to assisted suicide and euthanasia, whether that is medical or nursing professionals. In some countries, some organisations may be in favour or they may have no statement. Most health care organisations are opposed to assisted suicide and euthanasia.

I thank the witnesses. I know Dr. McQuillan from north Dublin and the great work she and the organisation do in palliative care medicine. I acknowledge that before I ask questions.

What struck me about some of the evidence and research I am aware of is the regimes that exist elsewhere. The Netherlands has been mentioned. I was quite shocked by the rocketing rise in the number of cases and the expansion of that regime. In a particular year, 141 people with dementia were involved in the regime, 16 for psychiatric reasons and 244 because of advanced age. In Belgium, it has been extended to children. In Oregon, it has moved towards psychological considerations over medical ones. I want to ask Mr. Michael Nugent and Mr. Tom Curran about the expansion of such regimes and the issue of it going from being not a choice but a duty to die. Is there evidence that such regimes show the same caution as the Irish court system and palliative care organisations do? Is there evidence that vulnerable people in other countries have died as a result of the regimes that exist in those countries? What regime do the witnesses advocate for in an Irish context considering the regimes that exist elsewhere in which there has been quite extensive expansion? Mr. Curran mentioned he does not advocate the same system as the Netherlands. If he was to propose a model, what would it be considering the expansive regimes in other countries?

Mr. Tom Curran

To answer the question quickly, I would base it on the Oregon model. The Deputy said it has been extended to psychiatric illnesses. It is recognised by the medical profession that having a psychiatric illness does not necessarily mean a person is incapable of making a rational decision. Is psychological pain any less difficult to tolerate than physical pain? To me, it is not. Once a person can make a rational decision and wants to end his or her pain, why can he or she not have that choice? The vulnerability comes in when a person is incapable of making a rational decision and that is what we need to protect. That is not happening in Oregon. It is rational people with psychological problems who are making these decisions. They are assessed very carefully. Canada brought in a very similar regime. It is a little bit tighter than the Oregon model so maybe we should base it on the Canadian rule. Psychological pain is no less tolerable.

Does Mr. Curran have an example of a model he would propose?

Mr. Tom Curran

We have already proposed one. We have submitted a Bill that I worked on with four barristers. It took nearly two years to put it together. Under a month was spent preparing the bit that dealt with assisted dying and the rest of the time was spent looking at safeguards around the world, improving on some that were there already and adding to them. The majority of that time spent meeting four barristers regularly was based on putting safeguards in to prevent the vulnerable from being abused. We have a model there already that would work perfectly for Ireland.

Mr. Curran mentioned the assessment process and the rational choice. What I would give consideration to, particularly in an Irish context, is the fact that people are waiting perhaps a year for a psychiatric assessment. In that case, the focus should be on triaging people quickly and giving them the best medical care, which is evidence based, so that their psychological or psychiatric problem can be helped rather than normalising another assessment process that could undermine their evidence-based medical treatment.

I want to move to the issue of medical ethics and the ethical considerations. Doctors try to act in the best interest of the patient. They practise beneficence, not maleficence, and should do no harm. The principle of double effect has been mentioned in much of the research on this issue. How does Mr. Curran square the duty of the doctor, when he or she is training and working to act in the patient's best interest, to do no harm with ending a patient's life? How does Mr. Curran square that contradiction in terms of medical ethics? Is there an ethical principle that Mr. Curran upholds that supersedes the well-researched and published medical ethics that most doctors subscribe to?

Mr. Tom Curran

The ethics to which doctors currently subscribe are constantly changing. At one stage doctors were not allowed to perform operations under their code of ethics. That is now laughed at. Barbers performed operations before doctors were allowed to do so. There is a constant change in that-----

What ethical principle does Mr. Curran uphold that supersedes the well-researched medical ethics to which doctors under the Medical Council subscribe?

Mr. Tom Curran

I am not suggesting it supersedes medical ethics. Is it not a breach of medical ethics to force a person to live in pain or discomfort when they do not want to do so?

Does Mr. Curran agree with the principle of non-malfeasance, that a doctor should do no harm?

Mr. Tom Curran

It depends on how one defines "harm". Surely, to force a person to live longer than they wish in a state of discomfort, pain and distress is to do harm to that person.

Mr. Michael Nugent

Not even within the medical industry is there ethical consensus on this issue. Some doctors believe that the harm caused by assisted dying is worse than the alternative while others believe the opposite. The initial point made by Deputy Chambers in terms of focusing on safeguards is the key issue because we completely agree that those who want palliative care should have the best available. That is not in dispute.

As regards the ethical issue of people potentially being pressurised, even those opposed to assisted dying do not argue that we should ban people from refusing care and thus hastening their death on the basis that vulnerable people might be pressurised into so doing. The courts have indicated that the Oireachtas can come up with safeguards. We should not focus on palliative care, which we all agree should be available for everybody who wants it, nor models that are extremely vulnerable to abuse and which we do not support but, rather, the issue of appropriate safeguards.

Dr. Regina McQuillan

Going back to the point on medical ethics, the World Medical Association is opposed to assisted suicides and euthanasia, as are many medical professional organisations around the world. They feel it is unethical to be involved in assisted suicide or euthanasia.

I do not remember the exact details but I understand the High Court looked at the Carter v. Canada case and commented that although the Canadian High Court thought it could put in safeguards, courts in the United Kingdom and Ireland looked at the same evidence and came to the conclusion that it would not be possible to do so. The issue of safeguards is very important.

Justice is another area of medical ethics of which doctors are very much aware. This is about fairness. Part of that fairness is to ensure one does not do things which would unintentionally harm people. Equitable access to resources is another part of justice in health care. We do not currently have equitable access to palliative care, disability services, psychiatric or psychological support services and my concern and that of many working in health care is that to move in the direction of euthanasia would be to move away from investment in the appropriate services. In Canada, the health care savings from assisted suicide have been published and it is very worrying to think that this is a money-saving exercise. We have changing demographics and an older population. Colm McCarthy made the point some time ago that we have a policy problem, not a demographic problem. We need to change the policies to recognise our population and how we are. We may have policy problems in respect of the older population but we also have resource and research problems in respect of providing the right type of support for people. This will not meet everybody's needs but we need to be prudent and aware of the risks to the vulnerable in society and of the opportunity cost and the things that would not be developed if assisted suicide and euthanasia were permitted.

How would Mr. Curran respond to Dr. McQuillan's point on the diversion of public resources away from palliative care, which he agrees is an important initiative? Would the introduction of a regime allowing for assisted suicide and euthanasia dilute the required focus on palliative care? I ask him to respond to the points made by Dr. McQuillan.

Mr. Tom Curran

It is not an issue of diverting public funds but, rather, one of civil rights. If a person has a right to do something, the State must have an obligation to provide that to the person.

To return to the point on medical ethics, why does the medical profession need to be involved? It is not involved in assisted dying in Switzerland.

Are doctors there not involved in the prescription of fatal doses of drugs?

Mr. Tom Curran

They are involved with the prescription------

They are involved.

Mr. Tom Curran

-----but it does not have to be so.

Doctors prescribe and that is-------

Mr. Tom Curran

The assistance is not given------

Doctors prescribe the drugs and, therefore, they are involved.

Mr. Tom Curran

It does not have to be that way.

Dr. Regina McQuillan

A very important point that goes beyond the prescription of drugs is that Dignitas requires a letter from a doctor stating that a patient has a serious illness. That is a much more fundamental and worrying way in which doctors are involved. One could argue that in the case of a judicial execution the person who prescribes the drugs is not the executioner. However, in centres such as those run by Dignitas in Switzerland, health care involvement is required in respect of a diagnosis being made. It is a very serious risk to health care that one is required to make diagnoses to facilitate assisted suicide or euthanasia.

I agree it is a serious risk.

Disability Action in Northern Ireland is opposed to the legalisation of assisted suicide. It said that although people should have a right to control in their lives, changing the law to benefit a small number of people would have a much wider repercussion on how society values people with disabilities. How would the witnesses respond to its serious concerns about the introduction of------

Mr. Michael Nugent

I do not know anybody who supports the right to assisted dying who is in any way disrespectful of the rights of people with disabilities.

I ask Mr. Nugent to respond to the statement by Disability Action.

Mr. Michael Nugent

We support the right of those with disabilities to the best quality care for those disabilities just as we support the best possible quality of care for those who want palliative care. We are not opposed to any of those things. The point that only a small number of people may be involved goes to the core of the issue because we see this as a human rights issue and the purpose of human rights treaties under international human rights law is to protect individuals from the tyranny of the majority. Even if the rights of only one person are being infringed, those rights should be vindicated. The issue of the number of people involved is a distraction.

Disability Action made that statement.

Mr. Michael Nugent

I have responded to it. I also fully respect, support and campaign for the right to the best quality medical treatment for those with disabilities.

The concern of Disability Action is that there could be a conflict with the rights of those with disabilities because they fear the potential consequences for those rights should a particular regime is introduced. I thank-------

Mr. Michael Nugent

I refer to the Deputy's original point of safeguards. One must consider how to ensure that safeguards would address that issue.

The courts have said that safeguards and potential consequences are too speculative and distant and they would find it difficult to create such a regime because it would be impossible to tailor adequate safeguards. My colleague, Deputy O'Callaghan, wants to come in.

As do other members. As issue raised on which I would like clarification is that my understanding of the situation in Oregon and other places, from the limited reading and research I have done in advance of this sequence of meetings, is that a second medical practitioner must confirm the validity of the wishes of the individual patient and if there is any doubt as to the mental capacity of the individual, the case is then referred to a psychiatrist for confirmation.

Accordingly, not one or two but three consultant-grade doctors are involved. That is the case in Oregon, the regime which I read most about. How does that fit with Mr. Tom Curran's earlier expressed view that Oregon's regime was a possible model or template that could be looked at?

Mr. Tom Curran

That is one of the reasons we looked at Oregon as being the most likely to work here. The safeguards it has put in are as foolproof as one will get. The argument put forward earlier against Oregon is that it is widening it. That is its choice, however. The safeguards are still in place and still work. It has decided to widen it to people with psychiatric illnesses. That is Oregon's choice. However, the safeguards still hold.

Whether we widen it to that extent is entirely up to ourselves. As my mother used to say, if Johnny puts his finger in the fire, do you have to do it as well? We can tailor our particular situation to suit our ethics and our set of morals. Just because Holland does it in a particular way, which I do not necessarily agree with, does not mean we have to do it that way as well. It is taking the best part of some of regimes like Oregon's. We picked Oregon because the safeguards it put in are as foolproof as one will get.

Dr. Regina McQuillan

There was a study recently published about the Oregon experience. It looked at a small number of randomly chosen cases. There were three people with depression, which was not recognised and not treated. That is the problem. Although there are safeguards, they are still not perfect.

As is very much the case in our health services, unfortunately.

I thank the witnesses for attending. They are to be commended on being able to have a rational and civilised discussion on this very emotive issue.

I note Mr. Tom Curran stated he is aware that if a law is brought in, it must be in such a way that it cannot affect the vulnerable. He said that he wants a law brought in that would apply to people such as his late wife, Marie. How can this be done in practical terms? We are legislators and we are discussing section 2 of the Criminal Law (Suicide) Act 1993. Presumably, one would leave the prohibition there but would set out exceptions where somebody would not be subject to prosecution or guilty of an offence. Would a person have to be suffering from a terminal illness?

Mr. Tom Curran

No. The illness would be life-disabling or life-limiting but not necessarily terminal. For instance, going back to Marie's case, I wanted this for people like her. However, she did not have a terminal illness as MS is not regarded as one. It is continually disabling but not terminal. As was proved when we went to the courts, it is not possible to predict how long a person with MS will live.

Should there be a restriction on age? What have to be the exceptions? Mr. Curran mentioned earlier that a Bill had been drafted. I am sorry I have not had a chance to look at it. What grounds are in that Bill that would merit exemption from the prohibition on assisted suicide?

Mr. Tom Curran

Rational adults.

Say I decide I want to end my life.

Mr. Tom Curran

The Deputy can do that tomorrow. There is nothing to prevent him from doing that.

Let us say I am squeamish and I do not want to commit suicide. Instead, I want to go to somewhere like Dignitas.

Mr. Tom Curran

That is the Deputy's choice. However, one has to have an illness if one wants to go to Dignitas. One would have to have an illness under our Bill's provisions. However, it would not necessarily have to be terminal because the definition of a terminal illness is very narrow.

With what type of illness would one draw the line?

Mr. Tom Curran

Life-limiting. That is the definition used by the medical profession.

Who decides what is life-limiting?

Mr. Tom Curran

The definition is already there.

Would a doctor certify that Jim O'Callaghan has a life-limiting illness?

Mr. Tom Curran

Or has MS. I do not think that is too difficult.

Mr. Michael Nugent

It is worth noting when dealing with Marie's case the High Court and the Supreme Court found they could not identify a right in the Constitution to assisted dying but did say the Oireachtas could put one in place. They also said that in their opinion Marie should qualify for this. They made a typical Irish solution to an Irish problem, suggesting that, in Marie's case, they assumed the DPP would act compassionately.

That is the reason I am asking these questions. We are lawmakers. At the end of this process, we have to prepare a report and decide whether we recommend if there should be amendments to the Criminal Law (Suicide) Act. If we are going to do that, we have to set out a basis as to what should be the grounds for exemption from prosecution for assisted suicide. Obviously, Mr. Tom Curran has a personal story. However, we have to take into consideration not just the rights of an individual but society as a whole.

Mr. Tom Curran

I completely accept that.

If it is to be a life-limiting illness, how do we deal with somebody suffering from serious depression?

Mr. Tom Curran

We are getting back to the psychological illnesses. Depression is a difficult illness to deal with. Some cases are untreatable. Not all depression means that a person is incapable of making a rational decision. Again, the medical profession defines this.

I thank everybody for attending the committee. It is a fascinating debate. This issue is more about living than dying in some ways. I read Marie's book several months ago and it was one of the best books I have read in a long time. What I got from Marie's words was that she did not want to die but wanted to live. However, because of circumstances not of her choosing, she wanted to end her life in dignity. That is a fundamental question to ask oneself.

Are there any circumstances where somebody in a medical professional's care or another health care surrounding has the fundamental right to end their life in the way they want? I believe somebody should have the right to die the way they want. Are there any circumstances where somebody who is in pain and suffering can end their life by means of their choosing, rather than nature taking its course?

Dr. Regina McQuillan

I presume the Deputy is talking about assisted suicide rather than people committing suicide who have illnesses. People may die of suicide. That is a tragedy. I do not think there should be any assistance in suicide or any euthanasia in any circumstances. Once one starts making exceptions, it is normalised and then things get expanded. That is when the challenges arise. I do not believe there should be assisted suicide or euthanasia in any circumstances.

In circumstances where people are suffering a great deal, as a palliative care doctor, I work very hard to reduce their suffering. Sometimes, when dealing with people in the last hours or days of life, reducing suffering may be by sedation to reduce their awareness of it.

We are leading to potential harm in a wider area. When I am looking after a particular person, I have to look after the person but I also have to think about the impact of my actions in the wider area and wider society. I have a responsibility for my patients but I also have the wider responsibility. Some people are concerned about the idea of palliative care because they believe it is only about death and dying. I am very much trying to move people away from that idea and understanding it is about helping people to live well with a serious illness. If there is a situation where people feel palliative care is about bringing about a person's death, with their agreement or not, that is harmful to palliative care and to society.

I do not believe that there are any circumstances in which there should be assisted suicide or euthanasia. We need to treat people and their symptoms and to look for a balance there because occasionally one is aware when treating symptoms that there is a risk of harm. One has to balance that risk against potential benefit. Members may be aware of the medication known as Brufen or Neurofen. This is a pain-killer but can cause kidney disease. If I am looking after a patient who has both kidney disease and the kind of pain that responds very well to Brufen, I would weigh up the risks of harm of using Brufen for that pain rather than something else. One has to ask: what are the risks versus the benefits? If a younger person develops kidney disease from Brufen then there is the risk of harm that he or she might lose 30, 40 or 50 years of life. Someone with a much shorter life left to live, however, might accept the risk of kidney disease because the medication will be beneficial to them. In weighing up the risks of benefit or harm, I would actually think that, whatever the individual might want, the risk of harm from assisted suicide or euthanasia to the wider society is too great.

I saw a film that fundamentally changed how I think about this subject. It is a film from the 1980s called "Whose Life is It Anyway?" and it is quite amazing. It changed my perspective on this issue. Is there not a kind of de facto dignity in dying where somebody approaching the end of his or her life in a general hospital is prescribed morphine? Doctors know in such a case that somebody is coming to the end and will administer an amount of morphine that will, if not quite kill the patient, then certainly lead them to die in a certain way.

Dr. Regina McQuillan

I am absolutely clear that I will never give morphine or any other drug with the intention of ending somebody's life. If I am looking after somebody whose death is very close then I am aware that no matter what drugs I give that patient, he or she will die very soon. One of the great advances in palliative medicine since I started 30 years is the fact that we now have a range of different strong pain-killers. A patient who does not do well with morphine can thus be given different pain-killers, which help. I am very clear, however, that I never have and never will give a patient morphine with the intention of ending his or her life.

If somebody is very ill then I will also try to weigh up the balance, just as I do in the case where I might give a patient Brufen despite knowing of the risk to the kidneys. Having weighed up that balance I might give morphine, but I am very clear that while I will not leave people to suffer, nor will I be careless with the medication I give. I will never give medication with the intention of ending a patient's life. I will never do that.

I apologise for being late. I really wanted to be here for the witnesses' presentations but there was an accident on the roads which delayed everything. I thank all the witnesses for being here today. This is a very emotive issue and there is huge feeling around the question of dignity for those with illnesses they know they will not survive. It is vitally important that these people have dignity in dying and I consider this to be a human rights issue.

I have some concerns, however, particularly with regard to safeguarding. I apologise for having not yet read the legislation on this, although I intend to go back and read and investigate everything and to look at the different models offered in places like Oregon and Canada. There is a fear surrounding just how far Holland has gone with its very liberal approach to this; there is always that fear. We need to investigate this and I would definitely look at the Oregon model to see what kind of safeguarding is in place there.

One thing jumped out at me as I listened to the witnesses this morning. I was very glad that Mr. Nugent talked about his wife and about how he put a system in place for her. I understand the fear of pain, and knowing that she had something in place must have released her from that fear in some way. It was brilliant that Mr. Nugent was able to explain that to the committee because it is important. Mr. Curran spoke about the Oregon model and about its psychological aspect, something that falls under the area in which I do some work. I have no problem in saying that I have suffered from severe depression in my own lifetime and there have been times when I might have questioned what was the point of it all. I am bringing this back to my personal story and I do not know how I would have acted had assisted dying been available. I do not know now if I was thinking rationally then, even though I generally consider myself a very rational person. I now work with the family members who suffer from severe anxiety and depression. People cannot think rationally because they are living with relatives with addiction problems and so forth. They cannot think straight. The impact that their family situation has on them is soul-destroying and they sometimes feel like giving up. This is the area from which I am coming to this issue. I came through this and I know many people who did the same. Getting through something like this is empowering: one is left stronger and more resilient. All I am doing here is throwing out my own experience and that of the field in which I work. As a result, I have huge reservations about the psychological model in the whole area of assisted dying. No matter how rational one might be, depression is a kind of self-destruction. This aspect of the issue worries me.

I was glad to hear Mr. Curran say that we do not necessarily have to do the same as in Oregon. This was good to hear but I still have concerns about assisted dying and about how it might be abused. As my colleagues mentioned, we have to acknowledge the realities of the system we are in. It is a human right to have a home but those who are homeless do not have this right. It is a human right to get access to mental health care or indeed general health care, but many do not even get that. This is the basis of my concern. Could there be abuse in all this? I apologise again for not having yet read the legislation but I will do so. Could any of the witnesses give us some examples of what safeguarding measures could be put in place around this issue? How can we stop assisted dying being in any way abused? How can we ensure that vulnerable adults with psychological issues or disabilities do not fall victim to this in order to in some way get rid of the problem?

For the information of the committee members, Deputy O'Callaghan among others made reference to legislation that was presented in the last Dáil by Deputy Halligan, if I remember correctly.

Mr. Tom Curran

That is correct, yes.

Many members here today were not yet members of the Oireachtas at the time-----

Mr. Tom Curran


-----so it is quite understandable that they were not privy to the legislation in question. It is something that they can research, however, and is there on the record. I now call Mr. Nugent.

Mr. Michael Nugent

I will let Mr. Curran go into the details of possible specific safeguards but I would like to preface that by saying that we respect the right and duty of the Oireachtas to legislate and to create the safeguards it believes appropriate. While the members do not have to agree with all our potential safeguards, however, we hope that the very minimum starting point here would be that rational, terminally ill people should have the right to assisted dying. Safeguards may then follow from this, with regard to abuse, for example. We have already decriminalised suicide but this has not led to a broad belief in society that suicide is a good idea or something to be encouraged. We are not insisting that our proposed safeguards be implemented and we are in fact specifically saying here that we do not agree with some of the more liberal regimes that might prove easier to abuse.

Our minimum is rational terminally ill people.

Mr. Tom Curran

The concern many people would have is on the psychiatric illness side of things. I share that concern and that is one of the reasons it is not included in the Bill. It is quite controversial. I do not have all the answers to anything but this is something I do not have enough answers to want it included. We may get around to that some other time but certainly it is not included in this situation. There cannot be any greater safeguard than excluding it completely. What we want, as Mr. Nugent said, is the simple situation where people like Marie or Anne, who do not want to die, can avoid a bad death. That is what this all about. It is avoiding a painful death. As Mr. Nugent said about Anne, in our situation it was five years before Marie died. We imported her euthanasia drugs illegally. We imported them from Mexico using the Internet of known sources. It is a product called Nembutal. We got two bottles of Nembutal from a supplier in Mexico and they arrived by courier. Once they arrived in the house Marie started living. Her whole demeanour brightened. I have often said, and it is a strange thing to have to say, but there were two drugs that kept Ms Fleming alive and both of them were illegal. One of them was Nembutal and the other was cannabis. They kept Marie alive for years and years of her later life. Cannabis controlled her spasms and her pain like none of the pharmaceutical medications could and that is what kept her going.

However, on the question of whether I was ever suicidal, I do not think there are many people of my age who have never contemplated suicide. Ridiculously, when I was a teenager and my first relationship broke up I wanted to kill myself. I am still here. We all go through that. Unfortunately, there are a lot of people who do not. We have a huge volume of suicides and particularly with the situation that exists at the moment and the financial situation that existed in the last while. We have a huge volume of suicides among young to middle-aged men. We are doing very little to prevent that. We put a hell of a lot more effort into road safety and a lot more money into road safety than we do into suicide prevention. However, that is not what we are here to discuss. We should be putting more into that.

On the safeguards, it is very difficult for me because the Bill was drafted so long ago. However, one of the safeguards refers to two doctors and if there is any doubt about the mental capacity of the person to make rational decisions that he or she would have to be cleared by a psychiatrist. There are lots of safeguards like that built in. There are conversations and there are cooling off periods where a person says he or she wants to go now. That is not allowed because of the situation a member just spoke about, of a person changing his or her mind. There also have to be safeguards to try to determine that it is a decision that a person is making himself or herself. No safeguards that we bring in are going to be perfect. There is no such thing as a perfect society, unfortunately. There will always be people who will try to abuse any situation that is brought in. Murder is a crime but we read about murders every day of the week. Just because something is illegal does not prevent people from doing it, just as making assisted dying illegal is not preventing people from doing it. People are doing it all the time. We need a more regulated basis on which they do it. There is more likely to be abuse in an unregulated situation than there will is in a regulated situation. We will probably prevent abuse.

The other thing that is well known and has been established in other jurisdictions is that it is preventing suicides because when people realise there is an option, they go looking for that option and are identified as irrational. They get help that they would not have got otherwise because it takes so long to get psychiatric assessments. There is advantage to it from that point of view as well.

However, as I said, there will not be a situation which is a 100% foolproof. What we need to do is come as close as we can to that but just because it is not 100% foolproof does not we should deny what is basically a fundamental human right to a person to die with dignity.

We need to move on. We have another guest who has travelled a greater distance than all our current guests and we want also to give her the opportunity to present her views. I will call Senator Niall Ó Donnghaile and then all the members will get the opportunity to come back in again when our next guest presents.

Go raibh maith agat a Chathaoirligh. I will be brief as most of my questions have been asked in the course of the exchange. This has been a very worthwhile exchange and sharing of views on, as everyone acknowledges, a very important and emotive issue. It is one that everyone has probably been impacted by in terms of the loss of a loved one, particularly one who suffered pain and discomfort in his or her last days. A couple of points that struck me during the exchange was around the definition of "harm". I refer to Mr. Curran's exchange with Deputy Jack Chambers, asking if it is doing harm to allow someone to continue living in such pain and discomfort. I believe that it is a form of doing the person harm. What Deputy Gino Kenny said struck me too. This is actually an issue of life as opposed to an issue of death, and the kind of life that we want to give people. I want to make those points because they really resonated with me.

I have two brief questions. I hope they do not appear facetious but I presume not everyone in Oregon avails of assisted dying. I presume that there are still people who go through palliative care and die the way that they would have died and that this is an issue of choice for people and an issue of people planning for their deaths and ensuring that they have a passing that is dignified. With the greatest respect to Dr. McQuillan, because I have nothing but admiration for what she and other carers do at the end of people's lives, but just hearing about the cocktail of drugs and talking about the balance of Brufen and morphine and all of that strikes me, and I am sure will strike a lot of people, as a reminder of the months and months of prolonged periods people have to have a cocktail of certain pain relief while they were in great pain. That is my first question.

Deputy Jack Chambers raises very valid questions in terms of disability action. Deputy O'Callaghan also makes the valid point that we do have to tease all of this out because we are legislators. I refer to Senator Black's point about the procedures and the steps to access this stuff. No one is going to go out and actively seek people with disabilities for them to avail of assisted dying. Regardless of what the steps are, whether someone may have a disability that is life-limiting or debilitating, he or she would have to instigate and initiate this process. There are those two questions. Regardless of the model, whether is Oregon, Belgium, Holland or wherever, I presume that there are still people who avail of palliative care and die in the manner that they would have died and the manner people here, North and South, are still dying. I hope that is clear.

Would Mr. Curran, Mr. Nugent or Dr. McQuillan like to kick off?

Mr. Tom Curran

I am not sure there is a question there.

Neither am I. They have all been asked.

Mr. Tom Curran

Certainly not everybody who dies in Oregon dies by assisted suicide. In fact, it is quite a small proportion. People have to initiate the process themselves and that is where the safeguards come in. There are not people going around looking for people to die. The rate of assisted dying has definitely increased in all these countries but the rate of dying has not increased.

Would anybody else like to offer?

Dr. Regina McQuillan

Everyone dies. We have 100% mortality in case the committee is wondering.

We are all going to die; nobody is going to get out of this alive.

An important point in the context of these discussions is how people make choices. Senator Black made reference to the question of clear thinking. We can talk about the theoretical, rational adult who can make a very clear choice but very few people live independently and are able to make exactly the choices they want. Their choices are limited by the fact that they are part of a social network or a family and have other responsibilities. Choice may also be limited by the type of the health care to which they have access. If they cannot access health care easily, that might limit their choices. Their choices are also limited by how much they know or understand about the options or choices they have now and into the future. A cornerstone of health care is to respect peoples' right to make decisions. However, we must also respect the reality of the difficulties people may have in making decisions at times and of how decisions can be limited by the circumstances in which people find themselves. When we have a less than perfect health service and less than perfect disability services, that can also limit peoples' choices. Their choices will be limited by those sorts of factors.

I thank Dr. McQuillan.

That is part of the argument for universal health care that is free at the point of entry.

Yes, it is.

Mr. Tom Curran

In Oregon, for example, when applications are made, individuals are discouraged from continuing. All the alternative options are also explained to them. They are not encouraged to continue and are given the option of changing their minds at any stage in the process. In terms of reinforcing the point that was made earlier about Marie, a lot of people who obtain their prescription in Oregon never use it. It simply gives them comfort and some assurance that they are now in control but they die naturally.

Mr. Michael Nugent

I thank the committee for listening to our views on this. It is very important to us to be invited here to speak. I am very encouraged by the combination of compassion and responsibility that we are hearing today. It is nice to have legislators acting in this way.

We will certainly settle for that as the closing contribution. We will not throw that one back. On behalf of the committee I want to thank the witnesses for their engagement with us today and for their very informative contributions. The witnesses are welcome to stay on to listen to the next part of our meeting if they so wish. We will suspend briefly to allow the next witness to take her seat.

Sitting suspended at 11.03 a.m and resumed at 11.05 a.m.

We will now resume in public session. I welcome Professor Penney Lewis, professor of law and co-director of the Centre of Medical Law and Ethics at King's College London and thank her for travelling to be with us today. The format of the meeting is that Professor Lewis will be invited to make an opening statement, to be followed by a questions and answers session with committee members.

Before we begin, I am obliged to provide Professor Lewis with the privilege reminder or caution. Professor Lewis should note that she is protected by absolute privilege in respect of her evidence to the committee. If, however, she is directed by the committee to cease giving evidence on a particular matter and continues to do so, she is entitled thereafter only to qualified privilege in respect of her evidence. She is directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, she should not criticise or make charges against any person, persons or an entity by name or in such a way as to make him, her or it identifiable. I have already reminded the members of their obligations. I now invite Professor Lewis to make her opening statement.

Professor Penny Lewis

Thank you very much for inviting me. I am only going to make a very brief statement because my participation will be most helpful if I answer the questions of committee members. I will just tell the committee a little bit about myself. I am an academic medical lawyer based in London. I write and research on end of life decision making and in particular, on assisted dying. I have published a number of articles and a book on that topic and have given evidence orally, in writing or both, to a number of different legislatures considering legalisation, including the UK Parliament, the Scottish Parliament and some Australian jurisdictions. I was an expert witness for plaintiffs or applicants in the Canadian case of Carter. I provided expert evidence on the way in which assisted dying regimes work, including how the law was changed in various countries or jurisdictions to permit either euthanasia, assisted suicide or both; how those regimes regulate assisted dying, namely, the criteria and safeguards employed; and what the empirical evidence tells us about how those criteria are applied, how the safeguards work in practice and what evidence we have of assisted dying in jurisdictions where it is not legally permissible. I am currently an expert witness for the claimants in two cases that are going through the English courts. One is the Noel Conway case which involves a patient who is terminally ill. The other case, which was in court yesterday, is the case of Omid T who is incurably and severely ill but not likely to die in the near future. He has a life limiting condition but not one with an immediate end in sight.

I want to highlight the fact that I do not think that anyone who works in this area is completely neutral. I do not think that is possible. Having said that, I try to evaluate the evidence as rigorously as I can. I do not have a principled opposition to legalisation but that does not that mean that I am in favour of legalisation in all jurisdictions. I would not presume, not being an expert on the provision of health care in Ireland or how the legal system here functions, to tell this committee that Ireland should legalise or not. However, I can help the committee, I hope, by providing information about how regimes in other jurisdictions work and what the evidence tells us about the practice of assisted dying, both in jurisdictions where it is legal and where it is not.

I thank Professor Lewis for that and will now open up the floor to members. The first to indicate was Deputy Jack Chambers.

I notice Deputy Clare Daly is down as Deputy Jim Daly. Which is very-----

That is fine, it is no problem.

We will let it sit. I call Deputy Jack Chambers.

I thank Professor Lewis for appearing before the committee. I have a number of questions following on from our interaction with the previous witnesses. We discussed many of the regimes that exist elsewhere. How would someone with dementia be triaged in the Netherlands?

Professor Penney Lewis

There are two different ways by which a patient might access euthanasia in the Netherlands. By far the most common is where a patient in relatively early stages of dementia makes a contemporaneous request, and I distinguish that from someone who makes a request in advance of losing capacity. This is someone who would be assessed by the doctor performing euthanasia and the independent consulting doctor who, in the vast majority of cases, will be a doctor who has been specifically trained to perform that consulting function in euthanasia cases as having capacity to make decisions. It would be at a relatively early stage in the disease progression. The vast majority of cases involving dementia patients involve those kinds of patients. They also have to meet the other criteria, of which the most important to flag is unbearable and hopeless suffering with no prospect of improvement. They would have to convince the doctor that they were suffering unbearably as a result of their condition. The Dutch statute does permit advanced requests for euthanasia, that is, a request made in advance of the loss of capacity. The evidence appears to be that Dutch doctors do not like to perform euthanasia in those circumstances and the number of advance requests is tiny. The vast majority of dementia cases where the patient has received euthanasia have been contemporaneous requests. In theory, it is possible to make an advanced request. There are two reasons those cases are vanishingly small. One reason is that doctors like to be able to speak to the patient about his or her request at the end and be sure that it is what the patient still wants. The medical association advises that one must still be able to do that so if one cannot then, one should not perform euthanasia. The other is that the unbearable suffering criterion still exists so the doctor would still have to be convinced at the time of the euthanasia that the patient was suffering unbearably and it can be quite difficult to be convinced of that if the patient no longer has capacity to express to the doctor his or her suffering.

How are psychiatric conditions assessed?

Professor Penney Lewis

Dutch law permits euthanasia in the context of what it calls non-somatic suffering or suffering from a disorder that is not physiological. That was the case for many years prior to the statute. There was a court case called Chabot where it was permitted. The number of cases is small and the criteria are similar. One must have a request that is valid, so it must be made by someone with capacity, it has to be voluntary, well considered, which includes a requirement that it be well informed, and the patient also has to be suffering unbearably with no prospect of improvement. It is possible to fulfil that criterion but not if the patient refuses realistic treatment possibility. If the doctor believes there may be a treatment that might work for the patient, and it is a realistic possibility, then euthanasia would not be available. The consulting physician or an additional consulting physician has to be a psychiatrist. There will be psychiatric input and in most cases with mental disorders in the Netherlands, the physician providing what is usually physician-assisted suicide in psychiatric cases rather than euthanasia will be a psychiatrist. There will definitely be psychiatric input looking at capacity and the unbearable suffering and treatment possibilities.

Would Professor Lewis agree that there is a contradiction or conflict in the ethical considerations for the doctor in that instance?

Professor Penney Lewis

I would say that is for individual doctors to decide. I think there are many psychiatrists-----

Under the framework of ethical principles, if a psychiatrist authorises euthanasia for a psychiatric disorder under a particular regime, would it run contrary to his or her training to act in the patient's best interests, to do no harm and work within the treatment algorithms? Is assisted suicide within the treatment algorithms of psychiatric care?

Professor Penney Lewis

For some psychiatrists in the Netherlands and Belgium, the answer to that question is "Yes".

What about under international guidelines? I do not believe there is. Is there evidence-based under treatment algorithms for assisted suicide underpinned in psychiatry?

Professor Penney Lewis

I am not an expert in psychiatric treatment algorithms.

Okay, but Professor Lewis is referring to how psychiatrists have a role in this matter under this regime.

Having discussed the Netherlands, I will move to Belgium. It has been extended to children in Belgium. How do children have the capacity and are there ethical considerations there?

Professor Penney Lewis

It is also available to children in the Netherlands.

Sorry, I know. It has been extended to Belgium recently.

Professor Penney Lewis

It has indeed. One case has been reported of an adolescent accessing euthanasia in Belgium.

Can Professor Lewis give examples about the ages?

Professor Penney Lewis

I do not have information about the age. The way the Belgian law works in regard to adolescents is that, again, there is a capacity assessment and the child must have what the Belgian law calls the capacity of discernment. The Belgian law is interesting because unlike for the rest of the cases eligible in Belgium, children can only access euthanasia if they are terminally ill. The Belgian law is modelled on the Dutch law which means the main criterion in regard to the patient's condition is that they be suffering unbearably. It is more restrictive in regard to children. They must be suffering unbearably from a terminal illness. Looking at the data, we know that somewhere between 60% and 80% of all cases of euthanasia or assisted suicide in permissive regimes are a patient suffering from advanced cancer. The most likely scenario would be an adolescent with the capacity to make decisions who is terminally ill from advanced cancer. There must be an assessment by the physician providing euthanasia as well as a consulting physician. For children, there is an additional third assessment by a child psychiatrist or child psychologist, the parents have to consent. If all that is satisfied, and all the procedural requirements such as the number of conversations with doctors, and the request, then euthanasia can be provided. As I say, there has only been one case since it was legalised in 2014.

There is obviously parental involvement. Is there a conflict between what some have characterised as a right to die and a duty to die, where parental or familial involvement, whether at a young or old age? What is Professor Lewis's ethical view on that?

Professor Penney Lewis

The reasons there are so few cases involving adolescents in the Netherlands and Belgium, even though the Dutch law has been open to adolescents since 2002, is that terminally ill children tend to want to live as long as possible because they are worried about their parents. They tend not to go down that road because their main concern is what will happen to their parents after they die? Will they be very sad? Will they be able to cope? Explanations such as that help to explain the very small number of cases.

Some of the previous witnesses mentioned that doctors could be excluded from the process. Is there a regime where doctors are excluded?

Professor Penney Lewis

I am not aware of a regime that does not involve doctors at all. No.

In the previous session it was mentioned that doctors could and should be excluded. Is Professor Lewis saying there is no regime where doctors are excluded?

Professor Penney Lewis

Yes. I am not aware of a regime where there is no medical involvement. I wish to make a tiny comment that does not contradict the point. In the Canadian system it is possible that one could be provided with euthanasia by a nurse practitioner and that the consulting health care professional could also be a nurse practitioner. In Canada it is possible that one could have euthanasia solely provided by nurse practitioners. I do not think that is where the Deputy was going. I think he talked about no health care professional involvement.

That is right. The issue was discussed during the previous session.

I will go back to what the disability groups have said in Northern Ireland. Earlier I quoted Disability Action and I will do so again:

Disability Action is opposed to the legalisation of assisted suicide. Whilst we believe that people should have a right to control in their lives, we believe that changing the law to benefit a small number of people would have a much wider repercussion on how that society values people with disabilities.

Does the professor believe there is a potential conflict between trying to uphold a particular standard in a health care setting and, as Dr. McQuillan mentioned, a potential diversion or dilution of a person's right to health care as most people would see it? Does that diversion undermine what some of the disability groups have mentioned?

Professor Penney Lewis

The empirical evidence does not bear out that disabled people are discriminated against in terms of assisted dying. There is not a greater prevalence of disabled people accessing assisted dying in regimes that have been studied as in Oregon in the United States and the Netherlands. The most famous study has been carried out by Professor Margaret Battin, which I mentioned in my briefing paper.

Having said that, I recognise that our health care systems, and my only experience has been of those in the UK and Canada, are not perfect when it comes to providing health care overall but, in particular, for people with severe disabilities. It is important, if one is contemplating legalising, to think about what else one needs to put in place to ensure that any choice that is provided is a real choice. A couple of jurisdictions that have legalised have done so in conjunction with Bills that provide rights to palliative care provision, for example. Belgium and Luxembourg are the ones to which I refer. If someone is contemplating the end of his or her life he or she can make a real choice between palliative care and euthanasia. In Belgium, euthanasia is often embedded in palliative care practice so it is not necessarily a choice. One might well have quite a lot of palliative care and then eventually reach a point where one decides to avail of euthanasia and one's palliative care provider might be the one who provides one with euthanasia. One must think about legalisation within the context that one lives. It is up to the members to decide whether more needs to be done in order to ensure that disabled people have a real choice. Similarly, one must ensure that people who are terminally ill can make the choices they want about how they want to end their life and are not making that choice because palliative care is not available to them.

I thank Professor Lewis for coming here to talk to us. While she is a professor of law, there is no reason that she should have any knowledge of Irish law. Under our Constitution, the courts have established there is no right to suicide in this country using the principle of unenumerated personal rights. An argument has been advanced that there is an issue of equality between individuals who are able bodied who could commit suicide and people who are disabled but cannot commit suicide. That argument was rejected as well.

The statutory provision is contained in a 1993 Act. It states that it is a criminal offence for anyone to assist and there is a penalty of 14 years' imprisonment. What is the interpretation of the European Court of Human Rights in this regard? Obviously we want to know what our obligations are under that convention. Am I right in saying that under Article 2, the court has established that there is no right to die?

Professor Penney Lewis

Yes, I think the Deputy is right. Article 8 is engaged in this context so that the patient's right to bodily integrity and self-determination would be engaged in the context of a law that prohibits access to assisted dying or assisted suicide. In the cases that have gone to the Strasbourg court, the governments have been successful in justifying that engagement under Article 8.2 in order to protect the rights and freedoms of others.

The case of Pretty v. the United Kingdom was referred to by the Irish Supreme Court in the case involving Marie Fleming.

Professor Penney Lewis


There is no right to die under Article 2. It may be the case under the rights of private life under Article 8, as the professor has said, that states may be allowed to introduce laws in order to prevent an individual being distressed at the end of his or her life. Is that a general correct assessment of the situation?

Professor Penney Lewis

I think that is correct. As that is not the way in which Dutch or Belgium law changed on assisted dying, we do not have that kind of a background of a rights-based form of legal change. The question is whether a state could legalise assisted dying and whether that would be compatible with both Articles 2 and 8. The answer would appear to be "Yes". Certainly, the dissenters in the most recent UK Supreme Court case of Nicklinson v. Ministry of Justice thought that it was possible to have such a regime and have that be consistent with the European convention. Ireland has the responsibility to reach that decision. The European convention, at least as it has been interpreted, does not mandate that Irish law be changed but neither does it prevent Ireland from so doing in a safe and well-regulated manner.

Sometimes in the past this country has been compelled to change its laws because of findings by the European Court of Human Rights. Am I correct in stating that the law that exists in Ireland at present does not conflict with European rights law and they are compatible?

Professor Penney Lewis

I would say yes in terms of the law as we know it now. It is possible in the future that there could be a legal challenge, not necessarily to the Irish criminal prohibition but possibly to the English one, in which the European Court of Human Rights could consider, for example, the evidence that was presented in the Carter v. Canada case that took place in the Canadian courts. The evidence persuaded the Supreme Court of Canada to change its mind about whether it was possible to regulate safely and protect vulnerable people from abuses. The court could look at that evidence and think this criminal prohibition does not minimally impair the right that is engaged under Article 8.1 - the right to respect for private and family life. I could imagine a future successful challenge but at the moment I think the Deputy is correct.

Yes. At the moment we are in compliance with law.

Professor Penney Lewis


What is the current situation in the UK, in England and Wales?

Professor Penney Lewis

The situation is very similar to the Irish situation, at least on the Statute Book. We have a criminal offence of assisting or encouraging suicide, which is punishable by a term of 14 years in jail. We also have the common law offence of murder, which would be applied in cases of active euthanasia.

In addition, because there had been an unofficial policy of not prosecuting people who assisted their loved ones to travel to Switzerland for an assisted suicide, the House of Lords forced the Director of Public Prosecutions to publish a policy on how decisions regarding prosecutions would be reached in order that people who were contemplating helping a loved one in this way or any other way that would help them to have a suicide could know whether they were likely to be prosecuted. To comply with their Article 8 rights, the court held that any limits on those rights had to be prescribed by law or in accordance with the law and there needed to be a written policy. There is now a written policy in place which is factor based. As such, there are factors in favour of prosecution and factors against and while it is not possible to know exactly whether one will be prosecuted, no one who has ever taken a loved one to Switzerland for an assisted suicide has been prosecuted.

What does Professor Lewis think of this method as a means of dealing with the issue in Ireland, in other words, the law would not change but guidelines would be issued by a prosecutor to give clarity to people as to what is permissible and what is not permissible? It sounds like an Irish solution to an Irish problem, even though it is an English solution to an English problem.

Professor Penney Lewis

I have reservations about the procedural solution and the way in which it is being implemented in England. It is still difficult for people to know what will happen and they still face the prospect of being investigated by the police on their return from Switzerland. Exporting suicide to Switzerland is not fair, as it results in people either travelling earlier than they would have wished or being prevented from travelling because they are too unwell or do not have money to travel. It is expensive to have an assisted suicide at Dignitas. The figure that is most often circulated is approximately €10,000 which is a significant burden for people approaching the end of life who may well have other financial difficulties.

My concerns about the specifics of the policy are that there are no requirements or even factors related to the patient's condition. This means one does not have to be terminally ill and there is no requirement that one be suffering unbearably. In many ways, this regime is more liberal than the Dutch or Belgian regimes. I would not be in favour of simply transplanting this model into any other jurisdiction.

I thank Professor Lewis.

I thank Professor Lewis for travelling to Ireland for this meeting. That we have such high-level presentations from all of our guests today is a reflection of the seriousness with which the joint committee views this issue. The level at which we are discussing it is reflective of the desire of members to address the matter as one of the key equality agenda issues for our term of office. In that sense, Professor Lewis's contribution will be incredibly useful because we are discussing the most recent international evidence and legal examples from other jurisdictions. It has given members a very good perspective on the complexity of an issue with which other jurisdictions have had to grapple and which this committee is also trying to do address.

I want to have the right to make a decision on this issue if I ever come to believe I cannot go on due to an illness that is having an impact on my quality of life. I would like to think I would take the same view in respect of any of my loved ones. I am in favour of anything that assists this process and I believe most people take the same view. We are in favour of having an ability to control our lives and deciding the circumstances in which it be best for us to die. I do not believe these circumstances are restricted to terminal conditions, for example, I am in favour of applying them to cases involving degenerative conditions. That is my personal view, although I believe most people agree with me.

The objections that have been made in this exchange and earlier discussions appear to be twofold. The first is that assisted suicide will be exploited and people will have loved ones murdered and so on. While this is a real concern, killing someone against their will and when he or she has not taken a decision to die is, I presume, manslaughter or murder and regulations are in place to deal with such circumstances. The issue, therefore, is not whether the law allows somebody to make a rational decision to end his or her life as there should be other ways to deal with that argument. I ask Professor Lewis to explore this issue.

The second argument made against assisted suicide is that it assists in a cultural change and devalues certain groups of citizens. I also ask Professor Lewis to comment on this view. We cannot view these matters in isolation. If I am being honest, the message sent out to old people in Ireland is that they are a burden. We need only consider the state of our health service and the way we treat older people, which is incredibly disrespectful and much worse than in Mediterranean countries such as Italy where they are revered and valued. If I was an older person with a serious illness who was worried about my family, I would make my decision within the current societal norms. If we are truly concerned about valuing the lives of older people, we would argue for investment in the health service, respect for older people, the provision of better pensions and so forth. It would mean addressing these cultural issues because we send a message that older people are less valued. Is it surprising then that in such circumstances people will decide they may as well depart the scene because they are a burden? We tell them all the time they are a burden. What I am trying to get at are cultural issues and choice. I firmly believe that most people share my view that individuals have a right to make this decision but they would be worried about unintended consequences. I ask Professor Lewis to address the cultural issues, after which I will ask some questions on legislation.

Professor Penney Lewis

While the concerns about pressure and the message that society sends by underfunding health and social care for older people and persons with disabilities are valid, they are not concerns that are only about assisted dying. I included a second table in my briefing note, which shows the results of a survey across multiple jurisdictions which do not, unfortunately, include Ireland on the proportion of end-of-life decisions that are to withhold or withdraw treatment compared with, for example, the proportion of cases of euthanasia, assisted suicide and termination of life without request. What the table shows is that, irrespective of whether the jurisdiction is permissive or prohibitive, the numbers of assisted dying cases are tiny compared with the number of cases which involve a decision to withhold or withdraw life sustaining treatment. If we are worried about sending people messages about their life not being worth living or pressuring people to die before they want to or both, we should be worried about those messages and that kind of pressure with regard to all end-of-life decisions. In fact, we should be much more worried about them in respect of the much more prevalent end-of-life decision, which I am sure is being taken in Irish intensive care units, and which takes place in intensive care units in all of the jurisdictions surveyed.

While I agree that the problems the Deputy raises are real, they are not isolated or confined to assisted dying. Most regimes scrutinise assisted dying cases in incredible detail. To take the example of the Netherlands, the Dutch regional committees read a judgment about each case. Decisions to withhold or withdraw life-sustaining treatment, which could be the result of societal pressure or messages that society is sending and pressure by loved ones or people who are less than loved ones, are not scrutinised in the same depth. We need to worry about all of that but we need to worry about it more generally in relation to end-of-life decision making.

On another point, it appears from the evidence available to us that the types of people who request assisted dying tend to be less susceptible than others to pressure from their loved ones.

The stereotypical patient who avails himself or herself of physician-assisted suicide in Oregon is someone who is very independent, has always taken care of himself or herself, does not want to be dependent on others and wants to live life and experience his or her death on his or her terms, not on someone else's. According to the data for Oregon, in every single year the most frequent reasons for requesting assistance are loss of autonomy, loss of dignity and a loss of ability to participate in the activities that made life worth living for that person. It is not about not receiving enough pain control, symptom alleviation or feeling like a burden on others. It tends to be about control, autonomy and dignity. The stereotypical patient is not the person described by these concerns about pressure and the messages that society sends. That does not mean I do not think those are real concerns; I do. However, they are concerns for end-of-life decision-making more generally.

That is incredibly helpful. It is a view that I share. I do not think the evidence should give us anything to fear from bringing in such legislation, but we hope to learn from the best. If we were to legislate for assisted dying here, another question would arise. How do other jurisdictions deal with clinicians who might feel uncomfortable with assisted dying, or who might not be able to do it; conscientious objectors, as they are known in Ireland?

Another question is how we can avoid a situation where somebody who is very ill is dragged through a protracted process of examination beforehand, waiting for second opinions or even legal cases. How is that best balanced? In Ireland there is a similar discussion on our abortion legislation or rather lack of it, and reasons-based legislation does not work. Can Professor Lewis help us explore those issues?

Professor Penney Lewis

In regard to doctors who do not want to participate, all of the regimes that I have explored either have an explicit or implicit conscientious objection provision. I am not aware of any regime where there is an obligation on a doctor to provide assisted dying. Indeed, there is quite a lot of empirical evidence that in most jurisdictions there is a group of doctors who refuse to participate; a group that participate, but only in certain circumstances; and a group who are willing to do it, but that does not mean they accede to every request. There is quite a good body of evidence about requests that are granted versus requests that are not granted and the reasons doctors refuse to grant requests. Some refusals are because the individual doctors never grant requests, or for example because they do not agree with euthanasia in psychiatric cases. Doctors can object to certain kinds of euthanasia as well. It is possible to create a regime where doctors are making their own choice about whether to participate.

In that regard, it is interesting to look at the Canadian experience, because assisted dying is very new in Canada. There was some concern, in part because access to health care in Canada is sometimes very difficult in regions of the country that are very sparsely populated and have a huge land area. We still need more data, but it seems that there are enough doctors who are willing to provide assisted dying. There may be areas of the country where it is more challenging but the initial forecast that no or hardly any doctors would want to do this does not seem to be borne out in the Canadian experience.

The question of a protracted process was raised. The balance has to be struck between what the literature calls "prospective scrutiny", that is, scrutiny in advance of the provision of assisted dying, and "retrospective scrutiny". The Dutch have struck that balance quite well. They have trained a cohort of doctors to provide specialised advice and consultation in euthanasia cases. These doctors are very familiar with the legal criteria and with how to assess capacity, suffering, voluntariness etc. They also have a lot of experience in providing euthanasia, in consulting on it and in its alternatives. That provides a kind of prospective scrutiny. It is perfectly common in the Netherlands for a doctor to call in a consulting doctor who then says that the patient does not meet a certain criterion. That is the end of the case, although obviously the patient still receives care. There is then a process of reporting to the regional review committees, which review every single case. They publish a very detailed annual report and individual judgments in many of the cases.

It is certainly possible to shift that balance. The English debate at the moment is very fixated on the consent of a High Court judge. My feeling is that this is an extremely burdensome thing to expect a very ill patient to go through. The vast majority of euthanasia or assisted dying cases involve patients who are in their last weeks or months of life. That does not mean it should be restricted to those patients, but nonetheless that is the reality. They are mainly end-of-life cancer patients and that consent is a significant burden. Yes, by all means, some kind of prospective scrutiny is appropriate. Peer review, through involving another doctor, is desirable.

There are other models. The Colombians are trying a model of hospital review committees. It does not seem to be working in Colombia but that is probably because there is a lot of opposition to the legalisation, which was imposed by the courts. However, that is another possibility. That can also be quite a burden to a very unwell patient but it depends on how it is implemented. I am in favour of some kind of prospective review but also a reporting obligation and a rigorous assessment of the cases, with doctors being aware that if they do not comply with the criteria, legal and professional consequences are perfectly possible.

That is incredibly helpful to us in designing the type of legislation that might work here. It is really useful. I thank Professor Lewis very much.

There was a reference to legislation. I must clarify this for new Members of the Thirty-second Dáil and the current Seanad. The Bill to which we referred in the first section never got to Second Stage. There is no record of debate. It was just moved through First Stage.

I was not talking about that. I was talking about what would come out of this committee.

That was just a prompt, because members might otherwise go looking for a debate. The debate never happened.

I probably should have put this question to the previous guests. This is probably out of Professor Lewis's remit but I would like to ask about the online availability of drugs individuals could use to end their own lives. Obviously, one can get almost anything online these days. When individuals wish to end their own lives outside the jurisdiction of the law in their own country and take the matter into their own hands, how prevalent is that phenomenon, in Professor Lewis's medical and professional opinion?

Professor Penney Lewis

I am not medically qualified, so I cannot give the committee a medical opinion. I think the answer is that we do not know. I do not think there is any rigorous empirical evidence about the prevalence of obtaining that kind of drug. Having said that, there is anecdotal evidence concerning places where patients have imported drugs. There are quite a lot of cases in Australia that have been discussed in the media, with prosecutions either mooted or actually started, involving patients that have imported drugs.

I am certainly aware, anecdotally, of cases in other jurisdictions where patients have imported drugs over the Internet. The places where those drugs come from has also been discussed in the literature. There was reference to Mexico - that seems to be one of the jurisdictions. At one point, there was discussion in the literature of people going to Mexico to obtain veterinary drugs which they could apparently buy over the counter and that has moved on to people ordering drugs online from Mexico. I have also seen anecdotal evidence of ordering drugs online from China. All of the evidence is anecdotal. There certainly are cases. There is not any rigorous evidence of prevalence. We just do not know.

What we know, also anecdotally - but this is evidence that has been accepted by a number of legislatures and in a number of judicial decisions made across the world, including in the highest courts in Canada and the UK - is that people commit suicide earlier than they would have wanted to had assisted dying been available to them. The most recent evidence I have seen on this is from the Australian state of Victoria, which is probably about to legalise assisted dying. During the legislative process there, evidence was provided by a representative of the Coroners Court of Victoria who described the number of cases it sees of patients with terminal diagnoses or diagnoses of serious progressive neurological conditions whereby the patients have killed themselves earlier than they would have wanted - and sometimes in quite disturbing ways - in order to avoid being unable to do so later. There is evidence of individual cases of this kind in the literature that is being published. There is also evidence in court cases whereby patients have said, "This is what I will do," "This is what I would do," or "I know this person has done this." There is quite a lot of anecdotal evidence.

I would make a couple of points on the basis of the earlier engagement. Dr. McQuillan made a number of points, including in her opening address. In the statement she submitted to the committee, she stated, "The acceptance of assisted suicide and euthanasia could lead to an under-investment in palliative care research and service delivery, as assisted suicide and euthanasia may be promoted as cheaper options than appropriate health care provision." In Professor Lewis's knowledge of the global situation, is there any evidence that there was a reduction in investment in any of the other jurisdictions with the introduction of the right or choice to die with dignity?

Dr. McQuillan added a further point. I cannot remember the jurisdiction but it could have been Switzerland. Dr. McQuillan was making a point that-----

It was the Netherlands.

I am not certain of that. Dr. McQuillan was making a point that there had been statistics released that €X had been saved as a consequence of the introduction, which, in my view, would be tasteless. I wonder could Professor Lewis comment on that and can she give us any sense of any evidence in terms of the other experiences?

Finally, there is also a comment in the statement Dr. McQuillan submitted to the committee to the effect that "Changing the law to allow assisted suicide and euthanasia will endanger the lives of many." I wonder, as this is the last engagement, if Professor Lewis would like to comment on that.

Professor Penney Lewis

Palliative care is an area that is contested in the literature. I am sure, if one wanted, a person could be found who would tell the committee the opposite of what I am going to say. Having said that, what I am going to say is evidence-based. In fact, I will tell the committee about one recent Belgian study in a moment.

Generally, there is no evidence that palliative care suffers as a result of legalisation. That does not mean it is not theoretically possible. If a jurisdiction decides to disinvest in palliative care in favour of euthanasia or assisted suicide, then I suppose it could be possible but that is not what has happened in the jurisdictions that have legalised. One of the reasons the evidence in the Netherlands is contested is because it has a different model of providing palliative care from other jurisdictions. It is much more embedded in general practice. General practitioners tend to have long-term relationships with their patients. They tend to provide palliative care and they also are the most frequent providers of euthanasia. There may be less involvement with the hospice model but that does not mean that palliative care is not being provided. It is often being provided at home. Indeed, that is a model that is being rolled out in many jurisdictions. I am involved with the clinical ethics committee of St. Christopher's Hospice, the birthplace of the modern hospice movement. We do a lot of work providing palliative care to patients in their homes. That is a substantial part of St. Christopher's practice of palliative care. The Dutch evidence does not suggest that.

The Belgian evidence certainly does not suggest it. As I mentioned earlier, in Belgium, at the same time as euthanasia was legalised, a statute that created a right to access palliative care was also put in place. The evidence is that euthanasia is becoming embedded in palliative care. There is a recent study, published in the journal Palliative Medicine this year, in which the authors looked at almost 7,000 deaths in Flanders. They found that those requesting euthanasia were more likely to have received palliative care - 70% of them had been in receipt of palliative care - than others who, according to the literature, were dying "non-suddenly", that is, those not dropping dead from heart attacks but who had conditions causing deterioration over a period. Euthanasia seems to have been embedded in palliative care in a way that it is another treatment possibility that one can access as part of one's so-called end-of-life care package.

The other question is whether lives would be at risk as a result of legalisation. The evidence does not bear this out. The reason I included the first comparison table is to show that termination of life without request is a small practice. Members will notice that the scale on that chart goes from 0% to 7%. Indeed, I had to increase the size in order that the committee would be able to see the detail. It is a practice that happens in permissive and prohibitive jurisdictions. Australia, for example, had a very high rate of termination of life without request. The Belgian rate has gone down following legalisation. The Dutch rate is also going down and is very low now. The evidence does not bear out that there is more termination of life without request in jurisdictions that legalise.

The evidence does not show that euthanasia is only practised in jurisdictions that have legalised it. This practice exists. The question is whether one wants to regulate it. The answer to that must be that it is certainly better to regulate it. That would be the way to avoid having people pressured or killed without valid requests.

If we do that, at least then we bring the practice into the open, we will know what is happening and if there are people behaving outside the legal regime, we can deal with them appropriately.

I thank Professor Lewis not just for her responses but also for her engagement with the committee, which as, Deputy Clare Daly said, has been very useful and informative. Combined with the earlier engagement, it has been a good start to the process we have set in train. I wish the professor a safe journey home.

The joint committee will suspend for one minute before going into private session. We have several important decisions to make. We will not go back into public session today.

The joint committee suspended at 12.01 p.m., resumed in private session at 12.02 p.m. and adjourned at 12.30 p.m. until 9.30 a.m. on Wednesday, 29 November 2017.