Right to Die with Dignity: Discussion (Resumed)

We are dealing with item 4 on our clár for today, the second of our series of discussions on the right to die with dignity. The purpose of today's meeting is to conclude our hearings on the subject of the right to die with dignity. I welcome Professor Desmond O'Neill, who is a professor in medical gerontology at Trinity College Dublin. On behalf of the committee I thank him for his attendance to discuss this very important issue. The format of the meeting is that Professor O'Neill will be invited to make an opening statement and that will be followed by a questions and answers session. For his information, unfortunately, we have received a couple of apologies. Our number is not at its normal level this morning and we regret that.

At the outset I must remind Professor O'Neill of the matter of privilege. Please note that you are protected by absolute privilege in respect of the evidence you are to give to the committee. However, if you are directed by the committee to cease giving evidence on a particular matter and continue to so do, you are entitled thereafter only to qualified privilege in respect of your evidence. You are directed that only evidence connected with the subject matter of these proceedings is to be given and you are asked to respect the parliamentary practice to the effect that, where possible, you should not criticise or make charges against any person or persons or 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 Professor O'Neill to make his opening statement.

Professor Desmond O'Neill

I thank the Chairman. I am delighted to be asked here. To give some background, as well as being a geriatrician for over 30 years dealing with people at stages of vulnerability enmeshed in networks of care, I have also been involved in the development of heath care ethics in Trinity College and in Ireland setting up the first interdisciplinary course in health care ethics, which is the standpoint I would like to come from rather than from that of the law, the law being anethical and ethics being about what it is to do the right thing through virtuous thought and action. I am also the co-chair of the medical and health humanities strand in Trinity College, which is about trying to understand what it is to be human, to be ill, to be well and to experience the health services by a broader vision through film, television, literature, ethics, philosophy and theology, this being a very important part of what we call epistemology, which is knowledge. It is important to have a broader grasp of a broader sense of the knowledge sources we need here. This is not about quantitative science or empirical studies only showing X number of this or Y number of that. It is about teasing out what it is to be human, the value we put to life and the meaning of words we use such as "dignity". Dignity is very important here.

We need to look at dignity in places where it has been stress-tested. For example, the first line of the constitution of the Federal Republic of Germany reads: "Die Würde des Menschen ist Unantastbar", which translates as "human dignity is inviolable". It is interesting that the literal translation of "Menschenwürde", the German word for "dignity", is "the worth of being human".

The importance of health care ethics is that it is a broad reach of knowledge that includes that which is good within tradition and that which is evolving. People often refer to the phrase of the philosopher Santayana that those who forget history are condemned to repeat it. However, the first part of that statement which is etched on the library of Congress is that progress, far from depending on change, depends on conservation. As the German philosopher Hans-Georg Gadamer stated, within traditions very often lies embedded an unarticulated wisdom. The reason my submission includes a quotation from T. S. Elliot is that this discussion is a new venture for us and "a raid on the inarticulate".

The reason I address this issue from a health care ethics point of view is that we need an articulacy to tease out the complexities of the care of life with disability because prejudice against disability is widespread, occult and overt and perhaps one of the motivators for the wish of some for assisted suicide. It illuminates the challenge of recognising prejudices such as those based on age, gender, race or disability in public discourse on health care and allows us the challenge of recognising what autonomy is - an issue touched on last week by Dr. Regina McQuillan - because it is being pushed to the forefront and out of equilibrium with other elements of health care virtues that are important, for example, beneficence - doing good to people - and nonmaleficence - not harming people. It is interesting that one of the earliest statements in this context is from Hippocrates, namely, primum non nocere or first do no harm. To this has been added primum non tacere, or first do not be silent, which is of particular relevance if we consider not only the silence but also the collusion of German health care professions with the T4 euthanasia programme and the role of the Swedish medical profession during the long period in which there was enforced sterilisation of people with a disability. It is welcome that the committee is allowing the professions to address it. This is by no means an extension of the bad old days of paternalism, but it is related to a broader sense of what it means to be unwell and the importance of care to our moral development, both as a people and a society. Caring is an intrinsic part of human nature and human development.

To return to the issue of assisted suicide, I am very interested in human rights, specifically established rights such as the right to life and the right to the highest attainable level of health care. Sometimes in the public domain we fret more about phrases such as the right to die than the ethical issue of the right to the highest achievable level of health care. One of the key issues in this debate is an artificial and inappropriate attempt to divide out two forms of suicide. The high level of suicide in Ireland is a major concern. While it has thankfully dipped, more people continue to die by suicide than in road traffic accidents. Suicide causes extraordinary distress. Somehow or other, we have come to a point where, within public discourse, we have bad suicide or that about which we feel sad and grievous and wish to do everything we can to prevent it. As members are aware, there are several hundred charities devoted to addressing the issue of suicide. When people wish to engage with it as a source of stress and concern, we seem to close our eyes to the fact that it is effectively the same. There are simplistic tropes that somehow or other the suicides we wish to prevent in our suicide prevention strategies are somehow irrational. We do not have to go far in the literature to see that it is not the case that people who died by suicide all had a psychiatric illness and were not in their right minds. When we are looking at strategies to prevent suicide and support and nurture people who feel suicidal or have attempted suicide and to help people to deal with the aftermath of suicide, what we are looking at are the stressors and motives that drove them to it and what can we do to support, help and sustain people.

I have been in the public domain with the Irish Human Rights and Equality Commission. It has always struck me as interesting how Ireland and England have dealt differently with human rights. The Irish Human Rights Commission has predominately been headed by lawyers, whereas the human rights commission in England and Wales was headed by a distinguished philosopher. It always struck me that the discourse at the UK body was significantly different from and more nuanced than that at the Irish commission. The decriminalisation of suicide was not intended to establish it as a human right but to destigmatise and remove any shame associated with it for the families involved and, in particular, to help those who were feeling suicidal or whose attempt at suicide had not been carried through. There was no sense of it being a societal desire to extend access to suicide as a human right. We have to keep this comparator all the way through. For me this has parallels with my work with older people and is the challenge which arises from people trying to portray negativity in later life, for example, without looking at the denominator, the classic example being loneliness. In our society loneliness peaks between the ages of 15 and 35 years, but it is constantly portrayed in the media as an attribute of later life. While we do not want people to be lonely in later life, we must view loneliness as a denominator. The idea that there are two types of suicide, one which we might consider appropriate and another which we would not, is a serious challenge and contradiction. Emerson stated an unremitting consistency was the hobgoblin of a small mind. This is not something, however, about which we are talking with unremitting consistency.

The second issue is that of an idealised vision of unfettered autonomy. What I find strange in this regard - there are a number of very helpful contributions in this area, including from Ms Onora O'Neill and in a recent paper from University College Dublin - is how much this vision shares with the free market, neoliberal vision of humans as creatures of autonomy, choice and control, rather than being embedded in a framework of care. As Pellegrino says, all autonomy is exercised in the embrace of others. Ms O'Neill speaks about the danger of seeing ourselves predominately as consumers. When I hear this discourse, it immediately makes me think of the type of limited human being Ayn Rand, the darling of the alt-right, demonstrates.

Medicine has advanced to the point where every patient in this country will be asked for consent. They will not be asked to undergo what they consider to be burdensome treatment. As I will show, there is evidence from a range of jurisdictions that the vast majority die deaths that are considered to be deaths with dignity. The vast majority of people in nursing homes are not subject to cardiopulmonary resuscitation and do not die on ventilators. There is compelling evidence that there is a significant move forward in advance care planning. We have strongly encouraged this development and been part of developing an advance care planning course to train doctors. I have written a book entitled, Ageing and Caring: A Guide for Later Life, which includes an advance care plan, entitled "A Kinder Future". Unlike some advance care plans, A Kinder Future allows people to ask for what they would like, as well as what they would not like. One of the challenges in some of the advance directive work is that it is exclusively about not having something rather than having something.

As one of my colleagues in UCD has said, operating solely from a primacy of choice logic negates the interdependencies in care relations and assumes that all patients are independent and autonomous, even at moments of high vulnerability. There is a danger that end-of-life care is framed as abstracted rational choosers, ignoring that they are relational, emotional, and embodied human beings. Indeed, if I have illustrated this, I hope the British Medical Journal, BMJ, review of Terry Pratchett visiting Dignitas in Switzerland has been helpful in illustrating the enormous strains that this puts on our relational elements. To refuse care is a challenge and much of this discourse fails to recognise that we sometimes find it much harder to receive than to give. Choice logic may also lead to the prioritisation of performance and control over compassion and care. One of my early papers was on how we live in a hypercognitive productive society and how we have allowed ourselves be seduced by some of these tropes. Very helpfully, one of the fathers of both modern medical humanities and modern ethics is a wonderful man called Ed Pellegrino. He has talked about our concept, as physicians, as moderate autonomists and moderate welfarists so that we see that broader picture and the experience. We have certainly moved away from paternalism but autonomy must be seen in a broader context and cannot be given an idealised space. People are vulnerable and they are hurt. One of the real worries is around the information they get and also the prejudices they may harbour about future care.

This is most marked in younger older people. This is a key constituency around assisted suicide in the tiny minority of jurisdictions where it is allowed. The worry here is not so much that we impact on the disabled and the vulnerable today but we set a matrix and a paradigm where their life is considered to be less worth living. Recently, I had to do an editorial and write on a paper from Finland which asked older people from 70 upwards who among them wanted to live to be 100. It was like the old George Burns joke, which is about somebody who is 99. It showed that people in their 70s were very ambivalent about later life but actually people in their 90s said yes please, give me more. Indeed, I was at a meeting in Oslo a few years back where Norway's oldest man was present, a Mr. Falck who was 108. When asked when he thought it was a good time to die Mr. Falck said he used to think 110 but 112 was looking better.

We have many papers showing that people say that they would rather die than have a severe stroke. I have been dealing with stroke for over 30 years. We have a positive proactive compassionate appropriate development towards stroke. In 30 years not one of our patients has chosen this pathway. Without being a Pollyanna or a sentimentalist, what has been impressive is the resilience of patients and their families and the evolving of care networks that has brought this about. A turning moment for me was when on the Gay Byrne radio show there was a rather controversialist general practitioner, GP, who proudly boasted of how a friend of his had a severe stroke. The friend had said that if he ever got a severe stroke that he wanted to be given the big injection. The day after he got a severe stroke, the GP gave him this injection. I was horrified because I have seen people with a severe stroke turn around within 48 hours, within four weeks and within six weeks. This prejudice against disability is enormously powerful.

This is where my medical humanities hat comes out. In popular culture, I ask the committee to turn toward "Million Dollar Baby", the film with Clint Eastwood and Hilary Swank. One could feel within the media and popular discourse a sympathy towards the euthanasia that he carried out. However, as a carer I was horrified. She had pressure sores. One does not get pressure sores in good care with a paraplegic. She was clearly clinically depressed. She was in a horrible environment and Clint Eastwood's character could have put her into a wheelchair and brought her out to a ball game or a concert. What we saw was mistakenly construed as some kind of a noble deed, when what we actually saw was an ignoble response to dreadful care. One could say the same thing about Michael Haneke's most recent movie "Amour". Again, the intelligentsia very often lauded it as somehow noble. For those who are interested I can pass on the details. However, this was very clearly a case of poor care. The woman had a speech problem. When in her last moments the woman said "mal" those who speak French know that might be existential angst or it might be that she had a pain in her leg.

Our concern is that portraying certain conditions as worse than death undermines disability. We have seen this with Joanna Trollope in England saying that she would rather die than go "gaga", a horrible way of describing life for people with dementia, whose internal quality of life is generally maintained. Katie Hopkins is somewhat similar. However, people say that if one quotes Katie Hopkins what can one expect? The impact of how we frame our care network and our relationship has been beautifully outlined by Susan Sontag in her Illness as Metaphor. This was written in the 1980s when she had breast cancer. Care for cancer then was poor. She twigged, as a sensitive commentator on the human condition, that if we have a negative popular discourse about a condition it feeds into how we relate to it and the conditions. She wrote

Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick....It is impossible to take up residence unprejudiced by the lurid metaphors with which this it is landscaped.

This is all too current. Even within the medical profession people may be blind-sided by this. There was a recent RTÉ documentary by relatively young doctors who went to the Netherlands. I was quite horrified by one of the cases. The justification of the assisted suicide was that the patient had a progressive dementia and she would have to be fed with a tube. Again, I nearly hit the radio. We know since 1999 that tube feeding in dementia is not associated with maintenance of life, or suffering of pressure sores, but actually may be worse because people reflux. We would never have considered giving this woman a tube unless she asked for it. Papers from Belgium and the Netherlands, and Belgium in particular, around psychiatry patients, show that the sort of things that bring people towards assisted suicide in this type of set-up are very similar to those that bring them towards suicide, the suicide that we deplore, that we wish would not happen, because it robs us of some of our fellow citizens.

I come back to dignity. It is about realising that people often talk about how undignified it is for a patient but it usually is about how undignified the care setting is. Our role as sentient, aspirational human beings is to improve care. I was the first medical director of the Alzheimer Society of Ireland. I have been involved with the promotion of better standards at Leas Cross. I am very heartened by the current HSE programme about us identifying our common existential vulnerability and a common fate with people with dementia, rather that portraying it as Joanna Trollope does.

Much of the impetus for seeking assisted suicide is a complex nexus of fears over loss of locus of control. Certainly, from the point of view of the health care professions we can reassure people that we will maximise choice and autonomy over fears that one’s voice will not be heard, misperceptions of care paradigms - as I have spoken of several times already - occult and overt prejudice against disability and age, denial of the resilience of the human spirit in the face of adversity, and a failure to contextualise autonomy as one component of our relational framework of care and support through life.

Public and private discussion with regard to assisted suicide should be seen to represent concerns over adequacy of treatment and support as well as existential concerns relating to the future: these need to be proactively addressed. To ask doctors to run counter to this by killing patients short-circuits and undermines our impetus to care, comfort and support and damages our framework of care. Current and future patients need to be reassured that the response of the healthcare professions to distress and pain is one of compassion and care, addressing the needs at a range of levels - biological, psychological, social and spiritual - while respecting wishes to the greatest extent possible.

I thank Professor O'Neill for a very illuminating address, and for the humour, from time to time. It is much appreciated. Deputy O'Callaghan will begin the questions.

I thank the professor for his illuminating and unambiguous statement. It is helpful to us for a witness to be so clear on his views on the issue. One problem we have in Ireland sometimes is that we are imprecise in our use of language. Sometimes this issue is referred to as the right to die. Last week, a professor from London acknowledged to the committee there is no legal right to die, whether deriving from either European or Irish law. The suggestion is there is a right to die with dignity. Is Professor O'Neill saying - and from my experience of death, I believe it to be the case - that people in Ireland do die with dignity?

Professor Desmond O'Neill

That is very much the case. I referenced Harvey Chochinov's very major study on this. There are always elements that can be somewhat challenging. It is very challenging to interpret how death may be. History is written by the survivors. One of the most illuminating pieces on the challenges of how this is viewed is by three palliative care physicians in The Lancet using Tolstoy's "Death of Ivan Ilyich" to say how the relatives might prioritise pain control over independence whereas the patient with the illness may prefer having some pain with a clearer mind. They discussed how in the "Death of Ivan Ilyich" what Ilyich wants is for someone to sit with him and be with him. The answer to the Deputy's question is "Yes".

I have written of how one of the dangers of advocacy is that sometimes, to make our case we may overstate our case. In the Hospice Foundation surveys, while elements of care can be found that are not satisfactory - we are dealing with human imperfection - death is largely well handled. I find it challenging when I hear public figures say that the Irish do not talk about death because they do when the time is right. We are also elliptical people, we often talk in metaphors and euphemisms, but we do talk about death. I have had two conversations in the past 48 hours with people about how intense their care should be, both of whom died without either crash call or tubes. One was 90 years, the other 87 years, and in both cases I spoke to the patient not to their relatives.

The problem is that within human rights there are hierarchies and there are new rights which accrue around the peripheries of the core. The problem of the right to die with dignity is that unfortunately it has been adopted as a slogan by one side on this debate as a synonym for assisted suicide. One may speak of a right to die, but we will all die.

I think we can agree there is no such thing as a right to die. One justification for what can be called assisted suicide is that sometimes people might be suffering unbearably or might be terminally ill. Presumably, care has changed considerably from 100, 50 or even 30 years ago. Are the days of people dying in unbearable suffering over or does that still happen?

Professor Desmond O'Neill

Yes, there have been huge advances and change. I was the eighth geriatrician in Ireland in 1993, there are now 120, who have care embedded. There has been a huge rolling out. There is a complete culture in our hospital that when death becomes clear, we arrange for a side room, we have very proactive chaplaincy services. There is a very ready recourse to as much as is required or needed. The vast majority of deaths have been with as much comfort as possible and with dignity. It would be folly to rule out something 100%. All the plays of Molière are about the folly of humans trying to cast futures into concrete, whether it is Tartuffe building up religious credits or the miser building up financial credits. There will always be degrees of suffering. Death is a time of grief and people will come away from it with a range of emotions. Death in Ireland is among the best in the world that is possible. Palliative care is reaching further in all corners of care as well as in training of medical and nursing students. There can be an over-emphasis on doctors but there are many others involved in the healthcare system. When my own father was dying in hospital, the charm and care of the healthcare attendants was hugely important. During their courses, they are exposed to how we deal with death. The person who brings a patient his or her cup of tea and shares some kind words is important, and then there are nurses. There is a danger of over-focusing on one profession.

I think Dr. Regina McQuillan covered many of these bases very well. She pointed to many of the instrumental difficulties in implementing these and how people can have palliative sedation.

Is Professor O'Neill concerned that if a regime permitting assisted suicide in Ireland existed that it would put considerable pressure on older people who may feel they have become a burden on their family?

Professor Desmond O'Neill

Yes, I think it would. It would be occult and very internalised. We must send a message to people with disability at any age that our impulse is to care - to cure sometimes, to relieve often and to comfort always.

I took from Professor O'Neill's presentation that part of the origins of the argument that we should facilitate assisted suicide or permit it in our legal system is society's perception of what is perfection and that if it deviates from that, that people think that life is worth less than what it usually is. Is that correct?

Professor Desmond O'Neill

It is. When I speak to students I use the term "geroeugenics". President Higgins made some interesting remarks when he opened the Mercers Institute for Successful Aging. We know of his interest in ethics. The President observed that one of the dangers of the trope "successful aging" - with which I am less than happy myself - is that it might carry within it the seeds of a vision of the continuation of a healthy middle age rather than a coming to terms with our vulnerabilities. Without wishing to be a sentimentalist or a Pollyanna, the late Irish psychologist, Paul Kennedy, did extraordinary work showing how personal growth in people with spinal cord injury was enormous. I see people growing; I see relationships being forged.

Kirk Douglas had a stroke when he was in his 80s. The title of his book refers to it as his "Stroke of Luck". Without sentimentalising it, and it has to be the person themselves who says this, Douglas discusses how it made him rethink his values and family and forge bonds. Arthur Kleinman, a very celebrated psychiatrist discusses caring and how hugely important caring is to our moral development and to monetise, reject, instrumentalise or introduce the spirit of the market place to care and compassion will lead to people feeling that they are a burden. We must not make people feel that they are a burden because they have a disability, whether they are 23 or 93 years.

I thank Professor O'Neill for his excellent submission and his presentation which builds on what Dr. McQuillan outlined to the committee last week. He described very well the interdependence of the ethical framework and how it is important not to specifically and exclusively focus on one aspect to facilitate one argument and that we are all interdependent.

I was concerned last week in looking at the statistics from countries that had imported the concept of legally assisted suicide. In that regard, let us consider the example of people with psychiatric conditions. Does Professor O'Neill want to elaborate on his concerns about how other countries have broadened the reach to encompass individuals other than very vulnerable and end-of-life cases?

Professor Desmond O'Neill

Yes, but I am not sure how much one has to elaborate. There was a very helpful article in The New Yorker a year or two ago which showed the distress caused. We are beginning to see - I spoke about this at the beginning - suicide of the sort we very clearly wish to stop. Supporting the person is very much becoming the focus and a topic. This is perhaps one of the most distressing and predictable parts of the equation in respect of human suffering. With the type of suicide of which we know, we are always mindful of our efforts. In dealing with poverty, cancer, etc., we will always be left with some problems, but there ought to be an impulse to do better. What we are talking about undermines this concept and permits the view that the suffering in question is worse than death. We know from people who have gone through this that they are glad they did not commit suicide. It is deeply troubling and cannot be air-brushed away.

Is there evidence from other countries that the so-called right to die has been transitioned to a duty to die? Is there evidence that familial pressures have resulted in the rocketing statistics elsewhere and that the procedure is not of the patients' choosing?

Professor Desmond O'Neill

There are worrying dynamics. I was a good friend of a professor of geriatrics in one of the academic medical centres in the Netherlands who felt that, because his geriatrician colleagues saw life according to a framework whereby they would carry out an assisted suicide, he had to do it. Therefore, there is pressure within the medical profession. The Lancet outlines the talk within Canada about the sanctions that will be imposed on doctors who will not engage with what they call MAID, assisted suicide, or the sanctions that will be imposed on people who will not refer on cases for assisted suicide where they believe it is negative and unhelpful. There is already a sense of sanctioning on that side. As the Deputy is possibly aware, freedom of conscience is seen as being under considerabe threat in the ethics literature. Freedom of conscience is seen as an assault on rights. It is in a very difficult and dark place.

That leads to my next question which concerns the medical profession. Last week there was a disagreement between two delegates. One said a doctor did not have to be involved. Does Professor O’Neill agree that there would be an imposition on the medical profession if any regime was imported and that there is no regime anywhere that excludes doctors?

Professor Desmond O'Neill

A cynic might say this is completely contrary to the principles of the medical profession, that the medical professionals should be let do what they want. Ultimately, however, that is to turn our backs on what is a reservoir of human suffering that we need to address proactively. It is hard to see how health care professions cannot be involved in this. We have an ethical imperative to be involved. Just as doctors should have had in National Socialist Germany and as Swedish doctors have, we have an ethical imperative to say "No, this is not how to care for and protect people and it is not how to alleviate suffering." The answer is that this is something from which we cannot or should not walk away. Sadly, within any profession, outside or inside, one will always find some people who will do things about which we would be unhappy. I refer to Atul Gawande's magnificent paper in the New England Journal of Medicine on otherwise decent doctors who find themselves, under the pressure about which the Deputy is talking, engaging with executions in US prisons. That should be a sentinel paper for people to read because Atul Gawande is certainly seen as a very helpful moral compass in that regard.

How have they justified their actions under the ethical framework or principles Professor O’Neill has described?

Professor Desmond O'Neill

It is usually with some discomfort. One will always have outliers like Mr. Jack Kevorkian who was a pathologist with a van. For some people, issues arise over prominence associated with other forms of gain. Very often it relates to social contracts. There are very tight social contracts in countries such as the Netherlands where the authorities are extraordinarily keen to pull everyone else in with them, which, to my sense, always suggested a kind of inner or internalised insecurity. The authorities tried to bring forward the measure around the time of the Madrid declaration on ageing. For all of us involved in dealing with the issue of ageing, this is just not how we envision the welcome increase in longevity.

One will see justification. The first PhD in nursing was on experiments on concentration camp victims. That people will bend, row in or collude is something of which we should be mindful as a society. People rowed in and colluded around the time of the financial bubble. People row in and justify injudicious and foolish courses of action. What we have to try to search for is the truth but also what is at the core of ethics, which is virtuous thought and action. It was put well by Atul Gawande in doing the right thing.

Professor O'Neill mentioned different membership patterns in the UK and Irish human rights commissions. Has he communicated his concerns about the over-concentration of lawyers and the absence of philosophers to the Irish Human Rights and Equality Commission in that context?

Professor Desmond O'Neill

The last time I was discussing this issue with the organisation, it had a temporary head. I have been involved in a public debate with it over its stance which I consider to be injudicious. We talk in health care ethics about legalisms. I am always very concerned when one puts health care ethics and law together in one course. Health care ethics is about a broad, complex sense of what the issues may be, whereas, in legal terms, particularly regarding precedent, there tends to be a black and white decision, a dichotomous decision. One of our concerns about medical students and trainees is that when in doubt, if they do not have enough ethical formation to be comfortable with the degree of uncertainty, they will resort to legalisms, which involves asking what the law states. We know that the law can be unethical. One of the simple examples I use is that in all 50 US states the reporting of elder abuse was made mandatory in a misguided attempt to do right. It actually turned out to be a complete own goal and a negative because, as I know from chairing the Government working group on elder abuse, older people have a right to decide whether they want their cases to be investigated. If an elderly person had a son with a drug dependency who was taking some of his or her pension and the result of an investigation would be a breaking up of the relationship which older people are smart enough to see, he or she might refuse it. This may seem like a trivial case, but it points to a really important issue. Although the Oireachtas is a place where laws are formed, I hope it has a strong sense of looking, in a deeper sense, at where philosophy and ethics fit in and realises the laws will fit with philosophy and ethics rather than the other way around.

I thank Professor O'Neill for his excellent and thought-provoking presentation. It was quite different from many of the presentations we have received.

I agree the majority of people who die in Ireland, do so with dignity. I think of Marymount Hospice, one of the most cherished and popular charities in Cork when it comes to fundraising. It holds a special place in people's hearts in Cork. This discussion is in the context of a Private Members' Bill on this issue in the previous Dáil. There are advocates in favour of assisted suicide, many of whom are coming at it from their own experiences with family members and are well-intentioned. Their motivations are not difficult to understand.

In discussing this, the committee is trying to see what legislative basis might or might not be put in place for such a framework. There is a policy and broader end involved, which requires standards, safeguards and criteria. Professor O'Neill is coming at this from an ethical point of view. Does he believe it is ever moral to assist somebody in a suicide? Is it always immoral to assist suicide?

Professor Desmond O'Neill

Yes. I am delighted to hear the use of the word "moral" because people have been a bit touchy-feely about it. It is immoral to assist people in suicide. It may be well-intentioned. Movies are helpful vehicles for public expression. If one looks at the two movies I referred to, the people in them failed to provide for the person who they assisted in dying with an adequate framework of care or to be their advocate in the proper kind of way. One of the challenges of the Trump era is the disrespect for expertise and knowledge. It is important to infuse this debate with expertise and knowledge in an interactive and hard-questioned way. We have to set parameters. Very often in a pluralist society, people struggle to tease out or to express in a post-Catholic society their struggle in terms of relativism to say it as it is. Sometimes we have to say it as it is. Around the side of it being immoral, we need to see where the distress was and to be supportive. This is not about some form of a higher moral ground but about our common morality.

I am grateful no one in my life has found themselves in a position where they have felt the need to make this choice. In many of the cases I have read about, one of the greatest fears of the people involved is the manner of dying, which might be either protracted or proximate, and that they will suffer a much greater level of pain and suffering if they choose to die naturally. There are also issues about autonomy and ability. That is not so much a question as a statement.

Is Professor O'Neill of the view that there should be a degree of leniency or clemency shown to people who assist somebody in dying in such circumstances?

Professor Desmond O'Neill

I would revert the Deputy to Dr. Regina McQuillan's contribution last week and to Harvey Chochinov's study in The Lancet. There is the "Macbeth" quote, "Present fears are worse than horrible imaginings". It is about reassurance. That is why it is important the dialogue is informed. A worrying paper was recently published showing that most discussion around ageing is led by uninformed pundits. We need to reassure people. I will circulate Harvey Chochinov's study to the committee. It is the great leap. Henry James talked about his impending death as the distinguished thing. We have to create a discourse through the Oireachtas that we will create a framework that will support a person in such circumstances to the greatest extent possible.

I am not a legal policy expert. However, I fear undue leniency would be seen as condoning assisted suicide. I am one of the most widely published people on elder abuse. One of the challenges is around the various forms of elder abuse. Dr. Regina McQuillan touched upon this last week at the committee. To deny a person access, knowingly or unknowingly, to the appropriate type of care, like Clint Eastwood in "Million Dollar Baby" or the husband in "Amour", is potentially abusive. There is a natural sympathy around people who have been involved with assisted suicide in which some form of well-intentioned impulse steers away from the unfortunate things that may lie beneath. To me leniency would send out the wrong signals.

I thank Professor O'Neill for his presentation. We had two men presenting last week who talked about how their wives, when diagnosed with serious illnesses, had a fear of unbearable suffering. They both discussed how if they got to a point they would have assisted them in suicide. When that decision was made, both women felt relieved. They ended up dying naturally. However, it struck a chord with me that it made life better for them when they agreed on assisted suicide. What are Professor O'Neill's thoughts on that?

Both my parents had cancer and were in a hospice. They received fantastic palliative care. In the end, they both ended up getting morphine which hurried up their passing.

I know it helped. I was happy for them that they were in a very peaceful place and passed away very peacefully. What are Professor O'Neill's thoughts on that? In a way, I believe the morphine helped them to die more quickly. Perhaps I am wrong about that - I am not an expert, a medical doctor or anything like that - but, morally, from Professor O'Neill's perspective, how does he feel about it? Furthermore, what is his number one concern about this? Is it the worst way in which this would be abused? Is it the older generation? Is it the psychological side of it? Which aspect is he most concerned about?

Professor Desmond O'Neill

To respond to the first question, I will use an analogy about alcohol and heart disease. We know that if one drinks no alcohol or lots of alcohol, one is more likely to have heart disease. Should we, therefore, tell those who do not drink alcohol to start doing so? The answer is "No" because we know that in doing so it is almost certain that we would generate alcohol dependency and misery. The answer to the first question is that the cost of providing such reassurance is effective implementation of assisted suicide. The question is when does one discuss with someone who has multiple sclerosis what death will be like. This may prompt a discussion among certain people, a checklist which asks, "Which of these matters would you like to discuss?", or a more proactive way of discussing the matter. I have seen many people with multiple sclerosis die, nearly always comfortably. There is distress around death, and one cannot separate that out. The answer is that it would be burning down one's house to save the dog kennel.

Palliative care sedation is very well teased out in the literature. The number one point is that this was presumably discussed with Senator Black's late mother and father and they gave consent to taking morphine. As part of the package of care, the primary aim is to reduce pain. There is no strong sense of this unduly hastening death above and beyond the disease processes that carry on otherwise. It is possible it has a role in it. However, its aim is not to do that; its aim is to make one comfortable with one's consent.

The greatest abuse is the erosion of our sense of humans despite whatever vulnerability we have, of our sense as relational beings who have a relation to one another and care for one another. As I said, it is a sense of becoming human beings in the Ayn Rand, neo-liberal mould. The most recent prizes in economics have been awarded in the field of neuro-economics, which shows that although we prize the rational - of course it is important and it is the pinnacle of many of our achievements - many of our decisions are made on the basis of relations and emotions. It is a question of an assault on our ability to encompass the full spectrum of human experience and to recognise our own existential vulnerability and embrace it.

We have come to a conclusion. Is there any final point Professor O'Neill would like to make before we formally thank him?

Professor Desmond O'Neill

I am just very grateful to the committee for permitting this perspective. I was somewhat surprised to be asked to present, but this is a very important element of the piece. I am delighted to have been asked probing and sophisticated questions. This reassures me of Oireachtas Éireann and the democratic process. I thank the committee.

I again thank Professor O'Neill for his written submission, which is very helpful, his very thoughtful contribution this morning and the responses to our members' questions. We will take a brief moment while he takes his leave to prepare for our second engagement with Dr. Louise Campbell of the National University of Ireland, Galway. We will not suspend the meeting because all our guests are in the Visitors Gallery.

I welcome Dr. Louise Campbell of NUI Galway and, on behalf of the committee, I thank her not only for her attendance, but also for the written submission she provided to us in advance of the meeting. She probably picked up on the format of the meeting by observing the earlier session with Professor O'Neill. She will be invited to make an opening statement, which will be followed by a questions and answers session.

As with all our guests, I must caution Dr. Campbell on privilege before we begin. I draw her attention to the fact that she is protected by absolute privilege in respect of the evidence she is to give to the committee. However, if she is directed by the committee to cease giving evidence on a particular matter and she continues to do so, she is entitled thereafter only to a 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 she is asked to respect the parliamentary practice to the effect that, where possible, she should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable.

Members are already on notice regarding their conduct in their engagement.

I now invite Dr. Campbell to make her opening statement.

Dr. Louise Campbell

I thank the committee for the invitation to present. It is a privilege. I am afraid there will not be much humour in my presentation. I was warned that the committee is draconian about time so I have prepared a seven-minute summary of my longer submission.

That is great.

Dr. Louise Campbell

I may interject with a few of my comments. I-----

I can tell from the members' reactions that Dr. Campbell is getting off to a very good start already.

Dr. Louise Campbell

It does not necessarily mean we will be finished after seven minutes. I might add a few more comments as we go along.

I will state my position at the outset. I am cautiously in favour of legalisation of medical assistance in dying. I empathise with many of Professor O'Neill's concerns about vulnerable people, the elderly, the disabled and people feeling coerced, perhaps, by family pressures and economic pressures. However, I would answer many of the questions that were asked earlier in a different way. I am a philosopher by trade and I have professional training in clinical ethics. That is my background.

Voluntary euthanasia is a deliberate act undertaken with the intention of ending the life of another person at his or her request. Assisted suicide is the act of intentionally providing another person with the knowledge or means to end his or her life at his or her request. The motivation for both is to end the suffering of the individual at his or her request. The term "assisted dying" is the term I will use. It is generally considered preferable because it avoids negative or stigmatising connotations associated with suicide. Assisted suicide, as such, is legal in the Netherlands, Luxembourg, Switzerland, Canada, the US states of Oregon, Washington, Vermont, California, Montana and Colorado, and Washington DC.

Euthanasia is legal in Belgium, the Netherlands, Colombia and Canada and a number of other jurisdictions are currently debating the permissibility of legalising medical aid in dying. Any legislature which concerns itself with this issue should consider the following seven points.

First, the capacity for autonomy or self-determination is a core value in the liberal political tradition and it is regarded as one of unenumerated constitutional rights of citizens in many jurisdictions, including Ireland. Contemporary clinical practice places increasing emphasis on a patient's right to make and execute decisions based on his or her values and beliefs, including decisions which go against the patient's medical best interests and which may result in death. Proponents of assisted dying argue that autonomous patients who are suffering intolerably and wish to control the manner and timing of their death should be supported in doing so. Some argue that the right to request a hastened death is a logical extension of the existing right to refuse life prolonging treatment. Autonomy should not be reduced to unfettered choice. Properly defined, autonomy refers to a person's interest in making and acting on choices of momentous significance in that person's life according to that person's most cherished values and beliefs. It is not just about having a range of choices and choosing between them. The idea of relational autonomy reinforces that.

Second, legalised assisted dying is premised on a perceived duty to help end the suffering of patients who are experiencing physical or psychological pain which is intolerable for them and which cannot be alleviated. Some jurisdictions restrict the right to request medical assistance in dying to patients who have a terminal illness or a prognosis of six months or less. Other jurisdictions take a broader view of the nature of suffering and allow patients with conditions which will not end their lives within a specific period of time to request a hastened death. This includes patients with serious mental illnesses who have decision making capacity.

Third, for many individual health care professionals and professional organisations deliberately ending a patient's life at that patient's request involves abandoning the core values of medicine - healing, compassion, empathy and preserving life. Opponents of assisting dying argue that incorporating the prescription or administration of lethal medication into the practice of medicine will irrevocably alter the culture of medicine and destroy public trust in the medical profession. Palliative care providers, in particular, maintain that timely, effective and accessible palliative care support can reduce or eliminate demand for assisted dying. There is a genuine concern among palliative care providers and organisations that legalisation of assisted dying has the potential to stunt the development of palliative care provision and undermine the culture of palliative care.

Fourth, against this advocates of assisted dying argue that the suffering of some patients cannot be relieved by even the most effective palliative measures. Even where high quality palliative services exist, it must be recognised, first, that not all physical suffering can be alleviated by pain medication and, second, that not all suffering can be reduced to physical pain. In fact, most people who request assistance in dying do not do so because they are motivated by pain. Existential suffering is distinct from physical pain and may incorporate elements of anxiety, hopelessness and depression as well as fear of what the future holds. In the 2,300 years since the hippocratic oath was written, the values of medicine have evolved and the relief of suffering is now central to the practice of medicine. This evolution is reflected in medical practices which generate ongoing controversy.

Doctors are permitted by law to withhold or withdraw non-beneficial life prolonging treatment, thereby allowing patients to die. Doctors are also permitted by law to administer medications as a last resort to alleviate refractory pain or distress even though the administration of certain medications may foreseeably render the patient unconscious until death occurs or, if inappropriately administered, may have the unintended effect of shortening the patient's life. These practices are very controversial. Advocates of assisted dying point to the difficulty of drawing a clear line between these practices, on the one hand, and the deliberate administration of medication to end a patient's life on the other. This position is vigorously opposed by providers of palliative care, who maintain that a clear line can be drawn. More clarity and transparency are needed around these practices in all jurisdictions and more guidelines are needed to inform practice.

Fifth, opponents of medical assistance in dying argue that while legalisation may benefit a relatively small number of patients who have the resources and the capacity to advocate for their rights, it poses a threat to those who are less autonomous and more dependent on others, such as the elderly, people living with dementia and mental illness and people with disabilities, among others. Almost all organisations that advocate for disability rights oppose the legalisation of assisted dying on the grounds that it would have a disproportionate effect on persons with disability and would reinforce existing prejudices about disability. We heard about this in the earlier presentation.

Sixth, data from the Netherlands, Belgium, Oregon and Washington, the jurisdictions in which there is a longer history of assisted dying, suggest that the practice of assisted dying operates within its intended limits and is not utilised disproportionately by vulnerable persons. However, critics of the practice raise questions about the adequacy of existing safeguards to protect patients with dementia or mental illness, particularly depression and mood disorders which may compromise capacity for making decisions to end their lives. Certainly, greater oversight is needed to ensure that the rights of these vulnerable patients are not violated. Any recourse to data is problematic, as I said in my main submission, because data is always approached from the perspective of the interpreter. Different people on opposing sides of the debate can look at the same data and choose to emphasise different aspects of it to support their views. Epistemologically, we cannot simply rely on data. This is a value laden debate and the values of those on both sides are central to how it evolves.

Finally, the most crucial aspect of this debate, in my view, is that it focuses attention on the need to improve care for people with disabilities, mental health issues and dementia, in particular, to ensure they do not request assistance in dying as a result of a lack of proper community and other supports in jurisdictions in which this process is legal. This applies to all jurisdictions.

I thank Dr. Campbell for that focused opening statement.

I thank Dr. Campbell for attending the meeting. I welcome the fact that she is a philosopher. Too often when we debate issues such as this they are defined in the context of rights and laws. Many lawyers address us, so it is interesting to hear from somebody who is examining it from a philosophical background. Dr. Campbell indicated at the outset that the origins of the debate by people who propose and promote assisted suicide can be viewed in the context of the development of the liberal tradition and of the autonomous individual. Obviously the State interfered with individuals' rights for too long. We have seen that in Ireland and how that has developed. However, if one looks at it as being the liberal tradition based on self-autonomy why can one not extend that and say that if a 22 year old autonomous man or woman wishes to end his or her life, he or she should be entitled to have assistance in doing so?

Dr. Louise Campbell

That is an important question. The autonomy condition alone is not sufficient to bear the weight of a defence of a legalised practice of this nature. It absolutely must be taken in conjunction with the welfare or beneficence condition, which is the duty to relieve suffering. This is the relief of suffering which is otherwise intractable. In Europe, that refers both to mental suffering, that is, suffering caused by psychiatric illness alone, and to physical suffering and the psychological issues that arise from that.

It is slightly different from the autonomous argument. If one considers other arguments outside of people wishing to kill themselves, we disallow or prevent people from using serious drugs that will harm them. We intervene in that way. Dr. Campbell is stating that the State should only consider changing the laws if there are circumstances where there is an unbearable suffering. Is that right?

Dr. Louise Campbell

Defining "unbearable" is very problematic. Doctors in the Netherlands who are involved in this practice, and in other jurisdictions where it is legal, have problems interpreting the actual meaning of unbearable suffering. In some cases questions are raised around whether those doctors have complied with the due care criteria as set down in the law. It is problematic, I admit.

To answer the Deputy's question, the central point is about defending an autonomy interest. I prefer to speak of autonomy interest because I believe that people have interests in their autonomy being respected, and we can argue about definitions, rather than talking about specific rights and the sense of entitlement and choice because that is often too reductive. With regard to a commitment to defend citizens' autonomy interests, on the 2009 Debbie Purdy case, Baroness Hale said in the House of Lords that "if we are serious about protecting autonomy we have to accept that autonomous individuals have different views about what makes their lives worth living". We are speaking of momentous choices, not just superficial choices. The core issue is whether an individual should be entitled to determine on his or her own term the value and quality of his or her own life.

Why can they not do that irrespective of whether they have an illness? If we are seeking to value the autonomy of the individual, why restrict it?

Dr. Louise Campbell

I agree. Stories are picked up in the media about a very few cases in Belgium and the Netherlands where people requested assisted dying because they are tired of life. These are very controversial cases and I suggest that not many of them would meet the due care criteria set down in law. Some kind of threshold is required, however, because it is not just an individual exercising his or her own autonomy and taking his or her own life. This is about an individual requiring the assistance of a trained medical professional, who is thereby implicated in this act and who must feel it is sufficiently justified in order to comply with the request. This is why the safeguards are in place in these jurisdictions.

Deputy Jim O'Callaghan: Would Dr. Campbell agree that maybe there should be restrictions on personal autonomy?

Dr. Louise Campbell

Would the Deputy like to give me a little more of a sense of-----

In a situation, for example, where a 22 year old suffers unbearably from manic depression, the State should not permit that person to receive assistance to kill himself or herself.

Dr. Louise Campbell

I believe there should be restrictions on personal autonomy, and there are restrictions on personal autonomy. Other types of laws prevent us from doing whatever we want because we are limited by the autonomy rights of others. There is a case on YouTube that the Deputy could view about an individual who went through the entire process of requesting assisted dying because of a mental illness. She was given leeway to avail of the service but then backed out of it at the end. As she had a significant mental illness, she was allowed to avail of the service. There are diagnostic thresholds. There is certainly a need for greater oversight of the capacity assessment requirement in relation to cases involving psychiatric illness, and the literature points to this. It is not just about a person deciding they want to exercise their autonomy to end their lives. There is a diagnosable, tangible illness at the heart of their request. If we permit people who are suffering anxiety that is based on intolerable pain to avail of this service, why should we discriminate against persons who are suffering intolerable psychological pain based on a mental illness?

I thank Dr. Campbell.

I thank Dr. Campbell for her submission and her presentation. We heard from Professor Desmond O'Neill in the previous session. How does Dr. Campbell balance the principle of autonomy with the framework of care? How does a doctor square the argument of beneficence, non-maleficence, doing no harm, justice and the other fundamental ethical principles? How does Dr. Campbell balance the care ethic framework with a potential regime of assisted suicide?

Dr. Louise Campbell

Does the Deputy mean the ethical framework in general or the primacy of autonomy within that?

How does assisted suicide benefit a person?

Dr. Louise Campbell

Can I go back one step? Professor O'Neill spoke of ethics and-----

How is it doing good, or how is it not doing harm, if one defines assisting a someone's death as doing something that is not harmful? How does Dr. Campbell square that philosophically?

Dr. Louise Campbell

I see the point. In the 1960s, the bioethicist Dr. Leon Kass said on this issue that one cannot do no harm for a patient by making him dead. With regard to ethics, there are different views on how we reduce harm, minimise harm or avoid harm, just as there are different views about how we do good. This is what constructive social and political debate focuses on in many other areas. There are proponents of assisted dying within the medical profession and outside the profession who argue that it does more harm to a person to leave them asking for relief of pain or suffering-----

That can happen anyway-----

Dr. Louise Campbell

-----into the future than it does to, at their competent request, put an end to it.

Under a palliative care treatment algorithm, can we not relieve that pain and harm?

Dr. Louise Campbell

I do not think there is any algorithm. Some 5% of patients are resistant to pain management.

Can Dr. Campbell name an international medical framework that incorporates assisted suicide under the treatment algorithm?

Dr. Louise Campbell

What does the Deputy mean by the treatment algorithm?

As in the treatment of patients - that is what doctors do. Can Dr. Campbell name a medical framework that incorporates what her submission has detailed?

Dr. Louise Campbell

I would point to the jurisdictions in which the practice is legal. There would be medical frameworks on that view.

Are they medical frameworks or are they legal frameworks?

Dr. Louise Campbell

They are legislative frameworks which take into account medical factors; medico-legal frameworks.

At the conclusion of her submission, Dr. Campbell noted "not until vast improvements are made in the provision and organisation of services to support those living with disability, mental illness or chronic physical conditions and in the provision of accessible, effective palliative care services should any legal changes be implemented". Is Dr. Campbell saying that we need to hit the utopia of medical care before we even talk about this?

Dr. Louise Campbell

No, I did not say we need a perfect medical system. I believe we need a vastly improved medical system in terms of access to, and quality of care, for all of those vulnerable cohorts of patients, and for other vulnerable person also. A huge nexus of safeguards has to be in place before legalisation can be considered. There is no sense in decriminalising a practice such as this if the supports are not there for patients, but also for doctors.

Would the witness have concerns about some of the other jurisdictions that have extended this practice to children?

Dr. Louise Campbell

From the data, the practice is utilised in minors only in a tiny number of cases. These criteria for cases have to be extremely well justified

Did Dr. Campbell say earlier that data should not be incorporated in the arguments?

Dr. Louise Campbell

Yes. I did not say it should not be incorporated, rather I said it should not be the prime focus of any argument in favour or against legalisation.

Excluding data, should assisted suicide be extended to children?

Dr. Louise Campbell

In situations where a minor is deemed to be suffering intolerably, and if there is no way of relieving that minor's pain and no prospect of improvement, doctors and paediatricians make these decisions on a regular basis in respect of children who have serious life limiting illnesses and other types of illness.

Can Dr. Campbell give an example?

Dr. Louise Campbell

In my bioethics training, I worked in the Hospital for Sick Children in Toronto and at the time we were devising a policy on withholding and withdrawal of care for children with terminal illnesses or with severe life limiting prognoses. A lot of issues had to be taken in to consideration. There was not a little disagreement and there was much controversy about drawing up this document because people were coming from different perspectives and they had different understandings of what harms and benefits were even within the mandate to provide the best possible care for these dying children.

Professor O'Neill noted that the decriminalisation of assisted suicide "was certainly never seen to be an expression of a societal desire to extend access to suicide as a human right, or to position suicide as an act that equality legislation might facilitate".

Does Dr. Campbell have any concerns about the potential normalisation of the act of suicide and bridging the gap in terms of the arguments in the paper?

Dr. Louise Campbell

I did not have access to his paper but-----

I have read a part of it.

Dr. Louise Campbell

-----I listened to what he said earlier. Is the Deputy referring to suicide as it is normally understood in society or suicide in the context of assisted dying?

He makes the argument that it could normalise suicide as it is defined presently.

Dr. Louise Campbell

That is conjecture. One would have to look at how societal attitudes are changing. I respectfully disagree with him. He said that there is an inconsistency between promoting suicide prevention programmes in society and trying to prevent suicide - as we understand the meaning of the word - in the general population, on the one hand, and promoting cautious legalisation of assisted dying, on the other. I do not see that there is an inconsistency. Persons who commit suicide are very often individuals who have fallen through the net of care, who do not have social supports or who have not tried to access social or clinical supports, whereas persons requesting suicide or assisted dying have made that request as a last resort. That is one of the conditions in many of the jurisdictions in which assisted suicide is legal. The person's suffering is intractable and their physical and psychological or existential suffering cannot be relieved. They have been psychologically assessed for the most part. Some of the data - and I am cautious about referring to it - shows that the criteria for psychological assessment is not robustly met in all cases.

I have heard that too.

Dr. Louise Campbell

I refer to that in my paper. One has to be very cautious with the data but if that is the allegation that is coming out of some of these studies, it has to be looked at very closely and taken very seriously. People who request assisted dying do so as a last resort. They have attempted to access support and that support has not resulted in palliation of their symptoms, so they are requesting a further step as a last resort.

Dr. Campbell has mentioned that she wants a properly regulated system with genuine oversight and robust safeguards that outweigh the risk of harm to vulnerable persons. Can she give an example of a regime which does that? Does any regime that she has studied do it?

Dr. Louise Campbell

The Oregon Health Authority argues that the process of legalised assisted dying operates entirely within the intended framework in an exemplary fashion. Its most recent report, from 2016, summarises the data from 1997 to 2016, which is 19 years of data. It maintains that there is no greater threat to vulnerable persons than there is to any other member of society from the legalisation of this regime. However, the US jurisdictions do not allow anybody diagnosed with a psychiatric illness to avail of this service.

I believe we should look not at the North American situation but, rather, at the European situation. There is a long tradition in Luxembourg of allowing patients who are suffering unbearably, both for physical and psychological reasons, to avail of this practice. We can look at the documents published, in English, by the regional euthanasia committees in the Netherlands. The Belgian data is much harder to access. Much of the Dutch data is accessible, but not all of it is translated. A report is published every year which looks at examples of several cases. The cases are discussed in some detail, and if the cases are read carefully it is obvious that due diligence has been done in those situations where they claim that the due care criteria, under the law, have been met. The description of these cases is actually ethical rather than medico-legal in nature. Issues such as competence and the patient's values, wishes and prior expressed wishes are discussed, all of which have a fundamental bearing on an ethical discussion of what is right or wrong in these circumstances. Other cases are described as not meeting the due care criteria. There are only a few such cases; I believe there were ten in 2016 altogether. They did not meet the due care criteria largely because procedural requirements were not met, rather than the substantive requirements.

If one scrutinises these data and looks at the code of practice for practitioners providing this service, one gets a sense that it is well thought out and that every attempt is made to carry out due diligence. I am considering the increase in provision of this service to persons with psychiatric illnesses in both Belgium and the Netherlands. That is a very serious concern. On the whole, however, the published reports - certainly in the Netherlands - seem to indicate that due diligence is being carried out. Any system is open to abuse but there seems to be quite a lot of oversight in this system. The cases are looked at in detail and the five regional euthanasia committees are asked to report back on any concerns. It is said that 80% of the cases are straightforward; the mandatory notification procedure is met and the documentation is adequate. However, in 20% of cases the physician is called and questioned to confirm that the due care criteria was met and the code of practice was complied with. I do not think it is perfect but due diligence is being done. I would be satisfied that, with continuous tweaks and small improvements, abuse of vulnerable persons could be reduced to a minimum. I do not think it will ever be eliminated. There will always be unscrupulous doctors, as there are unscrupulous members of every profession.

A concern of our next witness, who is from Disability Action Northern Ireland, is that the stringent controls that would need to be put in place for the legalisation of assisted suicide would ultimately force the individual to forego his or her choice. By importing a very specific focus on that particular aspect of the ethical framework, we could deny vulnerable people the right to exercise their own autonomy due to a duty or imposition from society in general. There may be a societal flip which actually impacts on the vulnerable individuals we seek to protect. Does the witness recognise that is a reasonable argument for people in that scenario? Disability Action Northern Ireland has said that the debate will continue, but until society values disabled people as fully contributing members of our society it is unlikely that it could change its position because the risks are too high.

Dr. Louise Campbell

I mentioned that almost all disability rights organisations are opposed to the legalisation of assisted suicide on two primary grounds. One is disproportionate impact. I am not sure if that is what the Deputy was referring to in the first part of the statement he cited, namely, that persons with disabilities will be disproportionately impacted upon, not just by legislation or because of their disabilities but as a result of the fact that they often have multiple disadvantages. They might live in poverty, subject to a feeling that they are a burden to their families, or they might self-stigmatise their disability on the basis of the kind of stigmatisation and negative attitudes about disability that exist in society. They may feel lonely or isolated. There is a plethora of reasons people with disability have multiple vulnerabilities.

The other reason that disability rights organisations oppose this legislation is that they conjecture that it will reinforce existing negative attitudes about disability because many of the people who request assisted dying - 97% in Europe and 100% in North America - cite reasons for requesting assisted dying as loss of dignity, mobility and freedom and an inability to carry out personal activities of daily living and daily care.

The people who are requesting assisted suicide services describe these impairments as undignified, humiliating and demeaning. Disability rights groups are rightly antagonised by such descriptions because they often apply to daily life for those with chronic disabilities. We have to be very careful about everything we say about disability because there is so much stigma attached to it and so many unconscious negative biases in society towards people with disabilities. Something must be done to address those negative attitudes. Just because a person requests assistance in dying, having acquired a disability or a condition which impairs him or her, does not mean that he or she is, at the same time, devaluing or making a judgement about the life of someone with a disability. Individuals with a disability may be very resilient, having learned to live and cope with their disability. They may not be very happy all of the time but they may be well able to deal with their disability. It is not the case that the person who is requesting assistance in dying on the grounds of the same functional impairments is making a value judgment about the life of a person with a disability. There are two separate ways of enacting autonomy.

My final question centres on the contribution by Dr. Regina McQuillan last week. She spoke about diluting the resource allocation for palliative care. If one imports the right to assisted suicide into our health care framework, then one potentially dilutes or undermines attempts to achieve the best health care system for everybody. Would Dr. Campbell accept that importing the right to assisted suicide impacts on the capacity to provide other services, including palliative care, for example, because resources are finite? Would that be a concern?

Dr. Louise Campbell

I have two points to make and I will try and make them briefly. First, the opposite is of concern to many of those who are arguing against legalised assisted dying. Their concern is that persons who wish to avail of the assisted dying service will have their request granted more often because it is cheaper on the system to assist somebody to die than to provide very costly palliative care.

Is Dr. Campbell saying it is cheaper?

Dr. Louise Campbell

I am saying that the argument made by opponents of assisted dying is that people's requests will be granted because it is cheaper not to continue to provide intensive palliative care. That is a conjectural argument made by opponents of assisted dying. I do not agree with that and do not think it can be substantiated. One can have palliative care provision and legalised assisted dying operating in parallel and sometimes symbiotically within the same jurisdiction. They share similar goals, despite massive disagreement between the two approaches to intractable suffering at the end of life. The Belgians increased their funding for palliative care by 108% between 2003 and 2010. Most of that funding went into home palliative care, at approximately 70%. The overall health budget, by comparison, only increased by 2.34%. There was a massive increase in funding. At the same time as the introduction of the Belgian Act on Euthanasia in 2002, a companion Act was introduced to give every Belgian citizen the right to access quality palliative care.

The palliative care discipline is growing in all jurisdictions. It is not fully developed yet and there is considerable variability both across and within jurisdictions.

I thank Dr. Campbell for her very comprehensive presentation. I ask her to give us an example of someone for whom assisted dying would be appropriate. I saw a documentary by Louis Theroux on hospitals and dying in America. It featured a young man who had been in a very bad accident. If I remember correctly, the medical team was saying that the machines should be switched off because he was going to die anyway but his family kept saying "No". Eventually, he came out of his coma and went on to live a very full life. In that context, my question centres on the role of families in assisted dying. Can families make decisions on behalf of loved ones? In the case of children, who makes that decision?

Dr. Louise Campbell

Can I give the example last?

Dr. Louise Campbell

The second question was on the role of families. There is not enough research on this. It is a really important question because families can influence patients in all sorts of ways in terms of end of life decisions and for all sorts of reasons, not all of which are necessarily benign. In the situation described by Senator Black, the patient's family was opposing the proposal to discontinue treatment. The patient was effectively in a coma for many months. Statistically, the chances of coming out of a situation like that are something like one in a million. The request of the family was to prolong the treatment in the hope that he would recover and he did, which does not happen in most cases. This is a slightly different issue in that the treatment is intervening to keep the person alive until he or she putatively recovers but in a lot of cases, there is no chance of recovery. That is a medical judgment with some values built into it. The family has a role and can influence treatment.

In terms of the available data on assisted dying, a study in Washington State found that approximately 30% of patients did not tell their families that they were going to avail of assisted dying. This is a very complex question and we do not have data on the extent of family influence. However, as with any other decision, families can have an influence. Does that answer the Senator's question?

That worries me a little because it gives rise to the question as to where one draws the line. It is a minefield if families get involved. We are working on introducing legislation to safeguard vulnerable adults and have been working on this area for some time. I am concerned about the role that families might play in this. Will they have an influence? What kind of influence will that be? It is an issue that definitely needs to be flagged. When it comes to children, who makes that decision?

Dr. Louise Campbell

In the Netherlands, the decision of a minor aged between 16 and 18 to avail of assisted dying may hold but parents have to be consulted. If the child is an emancipated minor and judged to have capacity, his or her decision may stand. However, it is very difficult with this cohort because they might not have the emotional maturity to appreciate the foreseeable consequences of the decision. That is the worry with children. They might have the intellectual capacity but not the emotional maturity. In the Netherlands, parental agreement has to be secured for minors aged between 12 and 16. The parents effectively make the decision, but with due attention to the child's wishes, as with other medical treatments. According to the regional committee report, one minor was assisted to die in 2016.

There are a tiny number of such cases which are very carefully scrutinised. In Belgium there is no lower age limit which is a cause for concern across jurisdictions. It is simple for a jurisdiction to state its age limit, for example, is 18 years, as they do in the United States and North American jurisdictions. There are ethical issues in providing for euthanasia in the case of minors, but it is carefully regulated and not about a child making a decision with which his or her parents are forced to comply. They are active decision makers in all cases involving minors. I mean no disrespect to anybody with a disability, but there are some children who will grow up enduring continuing pain, have an inability to interact with anybody in their environment and could require 24-hours-a-day care and it is justifiable to make a judgment on quality of life in such cases.

There is no such thing as a simple example; they are all multifactorial cases. The regional euthanasia committees publish annual reports which are worth looking at. They show that approximately 6,081 persons were assisted to die in the Netherlands in 2016, one of whom was a minor. They give samples of cases that meet the due care criteria. There is a one-page description of each case and practically all of the cases involve very debilitating physical illnesses. Between 75% and 77% of requests come from patients with cancer which in some cases has progressed to metastases and the patients have constant dyspnea, nausea, pain and difficulty in breathing. They might not be able to perform the activities of daily living and become preoccupied with the increasing pain they will face in the future. They do not only have physical concerns but also concerns about losing all control of bodily functions. People with ALS, Lou Gehrig's disease or motor neurone disease and neuromuscular diseases can be very concerned about losing all of their physical ability and being entirely dependent on others. It is for the individual to decide on the quality and value of his or her own life. Some people like Simon Fitzmaurice can tolerate this level of disability and do amazing things right up until the end of their lives, while others cannot bear the thought of a future of further debilitation and dependency.

In Dr. Campbell's submission she describes the underlying changes in the societal understanding and appreciation of these issues. She references the increased emphasis on personal autonomy and health care decision-making, issues we have teased out fairly well. She also said there had been a societal shift in the perception of the role of medicine. How can this be seen and how can it be quantified? How real is it? It is a blunt and bald statement, but how can it be properly measured? I am curious to know how factual it is. Will she elaborate on it?

Dr. Louise Campbell

It was, indeed, a blunt and bald statement. I am not generally a friend of the blunt and bald statement, but I was not implying that the shift included an endorsement of the doctor's role in assisting patients to die. I should have been a little more circumspect in what I wrote in that section. However, there undeniably has been a shift in the way we regard the role of medicine at the end of patients' lives. In 1995-96, in a case involving a ward of court, a family had to take a hospital to court to have ventilatory support for their daughter removed after 22 or 23 years. The guide to professional conduct and ethics for registered medical practitioners now emphasises that a doctor is under no obligation to provide treatment which is clinically judged to be futile, burdensome or disproportionate. In the 20 years since the court case there has been an evolution in what a doctor can and cannot do on the issue of allowing a patient to die. This evolution has taken longer in some jurisdictions than others. North America is an example. There was a belief the healing role of a doctor was to keep patients alive. Since the advent of palliative care we have a different, more nuanced understanding of the role of the doctor and medicine in general. It is now not just to heal or provide curative treatment but also to promote health and relieve suffering. Allowing a person to die at his or her request by removing ventilatory support was anathema to medical professionals 50 or 60 years ago and this was the attitude in Ireland even more recently. It is now an accepted part of the role of a doctor to seek a patient's consent based on his or her understanding of the value of his or her life, whatever the condition or the treatment for it.

Does that answer the question?

It does, but I would like to tease it out more. However, time is against us and we have another delegate to meet. I sincerely thank Dr. Campbell. Her written submission which I welcome is very thought-provoking. I also commend her for her presentation and the responses she has given to members.

I welcome Ms Karen Hall from Disability Action in the North of Ireland. I thank her for her written submission. She will be invited to make an opening statement which will be followed by a question and answer session, as was the case when she attended the committee on an earlier occasion.

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.

I invite Ms Hall to make her opening statement.

Ms Karen Hall

I thank the committee for inviting us. I have an awful cough so if I start coughing and sputtering, please excuse me.

We know that the matter under discussion is a highly sensitive topic. We understand that the committee is looking at what is happening in other jurisdictions in relation to the right to die with dignity. I will tell the committee a little about Disability Action for those who are not familiar with it. Disability Action is an organisation which has been working with people with disabilities in Northern Ireland for over 30 years. We are a human rights based organisation and our work is underpinned by our own charter of rights and the UN Convention on the Rights of Persons with Disabilities. We are a campaigning organisation and we work to bring about change and influence policy to ensure that disabled people are not disadvantaged in society and can make valuable and valued contributions. I am not a medical expert, a lawyer or an academic. I worked with disabled people and our members to produce a position paper on the issue. It only relates to Northern Ireland and we have not consulted or engaged with disabled people outside the jurisdiction on the issue.

There has been significant debate in the UK on the issue of assisted dying. I will use the terminology of "assisting dying" since that is what we used in our paper. In 2010, we produced a paper which set out our position on it. In the years running up to this, the subject of assisted dying and the right to die had been debated significantly in the media. Legislation had been proposed and individuals had sought clarification on the workings of the current law through appeals to the House of Lords. A consultation was undertaken by the Public Prosecution Service for new guidance for prosecutors under the current law. There were key issues that we felt needed to be considered and debated with disabled people and their organisations to take a position on it. I will go through some of the process and I am happy to take questions.

Lord Joffe attempted to bring legislation through the House of Lords in 2004, specifically regarding assisted dying for people who were terminally ill. That was the language used in the Bill. A particular concern was the definition of terminal illness in it, including terms such as "is inevitably progressive" and "cannot be reversed through treatment". Disabled people strongly felt that could be them even though they did not deem themselves to be terminally ill and that it was based on the medical model and not the social model of disability. That Bill was defeated in the House of Lords in 2006. There was a free vote in the House of Lords in 2009 on an amendment to the Coroners and Justice Bill which was defeated. The amendment would have removed the threat of prosecution from those who go abroad to help an assisted suicide. The House of Lords judgment in Purdy v. Director of Public Prosecutions led to the Director of Public Prosecutions in Northern Ireland preparing an interim policy that went out for consultation. We responded to that and there were key concerns about proposed changes.

I will address the implications of the debate for disabled people. While it is unlawful in the UK for someone to assist someone to die, there are few if any prosecutions. People felt that whatever the reason for that, any law that is meant to protect vulnerable people in society is weakened by its lack of application. There are questions around the terminology "right to die". In UK and international human rights law, there is no right to die. However, there is the right to life, one of the most fundamental rights that we have. People felt that talking about the right to die erodes the fundamental right to life that can be applied to ensure that all people are able to live with dignity and respect for their choices. There needs to be a clear distinction between someone wanting to end his or her life because he or she is terminally ill and wanting control over the implementation of that decision and a person who wants to end his or her life because of the effects of disability. Fundamentally, people thought that, as a society, we must ask ourselves if someone taking his or her own life because he or she has a disability is any different from someone taking his or her own life if he or she is not disabled. Do we as a society accept it more because it is a person with a disability who has ended his or her own life rather than someone without a disability? It is an increasingly complex debate but disabled people argue that society's acceptance of disabled people's deaths is a result of the negative and stereotypical attitudes which see disabled people as passive and non-contributing. If we give this message out to society, are we truly saying that a disabled person has less right to life than a non-disabled person?

We asked if legislation needs to change. People with certain medical conditions have firmly indicated that they want to make the choice and to have control over how they end their lives. These are often individuals with progressive conditions who fear that they may have to end their lives sooner than they would otherwise choose to ensure that they are in control of the decision and how and when it is implemented. They want some protection for their loved ones who may want to assist them at a later stage and who may be open to prosecution under the current law. Disabled people told us and are concerned that, when one looks at the detail, the medical profession makes decisions on treatment based on how it perceives the individual's quality of life. The overwhelming response from disabled people was to ask how anyone, other than the individual, can make that decision.

We took a clear policy position in 2010, which has not changed since, that we are opposed to the legalisation of assisted dying. While we believe that people should have the right to choice and control in their lives, we believe that changing the law for a small number of people would have much wider repercussions on how society values disabled people. The stringent controls that would need to be put in place for the legalisation of assisted suicide would ultimately force the individual to forgo his or her choice. It is not a position on which we have been challenged and it is as applicable today as it was then. The debate continues and as the committee will probably be aware, there have been other attempts to bring in legislation, mostly through the House of Lords. Until society values disabled people as fully contributing members of our society then it is unlikely our position will change. We believe that the risks are just too high. I thank the committee for its time and I am happy to take questions.

I thank Ms Hall for her presentation. I agree with pretty much everything in it. Does she want to respond to some of the debate she witnessed earlier? Were any of her concerns resolved in the responses given about regimes elsewhere?

Ms Karen Hall

We have a much more detailed briefing paper which was done in 2010 which I will forward to the committee. Something fundamental which comes out of it is something we said, that there will be abuse in any system. When we look at what has happened internationally and talked to disabled people about this, that little bit of risk, whatever it is, is too much. That risk of abuse affects our lives. That is about saying that if one cannot eliminate that risk of abuse, then it should not be there. I think that is key. Quite a lot of discussion was about palliative care. Many people we are working with who are involved in this are disabled people who are not in a palliative care pathway at all. The care and support to live independently is key to them because without that care and support to live independently, life can become difficult. It is not just about palliative care, but the care all around that.

What came out of our engagement was the big concern about medical professionals being the decision makers. If one looks at the different Bills, including Lord Joffe's Bill, they refer to medical professionals. That is a case of medical professionals again making a judgment on a disabled person's quality of life. That was quite concerning because people had come up against medical professionals who deemed their quality of life in a different way from how they perceived it as individuals with a disability. A practical example of that is when we see "do not resuscitate" orders. We as an advocacy organisation have made challenges to "do not resuscitate" orders that have been put on a disabled person's file without consultation with that person.

An example comes to mind where the term, "This person has a learning disability", was included in the reasoning for putting a DNR on someone's file. That person had been diagnosed with cancer. The medical professional had attached a value to that disabled person's life. The DNR order was not the person's will or preference. However, the decision was made because he or she was not deemed to have capacity. We knew from our work with the person beforehand that the person's preference was to continue with treatment. That is a practical example.

I thank Ms Hall.

I thank Ms Hall for attending. The term "disabled person" covers a large number of people, including those who are born with a disability and have a good quality of life throughout and, on the other side, a 40 year old who is involved in, for example, a car crash and becomes quadriplegic overnight. Would Ms Hall differentiate in any way? Would the latter example of someone enduring a car crash and finding it impossible to cope change her view in any way?

Ms Karen Hall

No. People who acquire disabilities at different stages of their lives have different experiences. We work with people with all types of disability and at different stages in life. When someone acquires a disability later in life, be it through a car accident or a progressive condition like MS, he or she might not be aware of the services that can be accessed to improve quality of life. Through habilitation and rehabilitation, many adjust to their new living conditions, but it is vital that there be services to help them live independent lives. If they are unable to access services that help them to, for example, drive again or be independent in their communities through decent care packages, they can start to feel burdensome on their families and so on.

It is interesting. The proponents of the argument consider it from the point of view of the rights of the individual - I am an individual, I am autonomous, I have rights and I should be allowed to do what I wish to do. Ms Hall's contribution is valuable. As legislators, we have to take into account society and broader groups within it. I suspect that many people who are disabled do not have the same opportunity to voice concerns that they may have with legislation such as this.

Ms Karen Hall

Yes. That is why we felt that the engagement was important. We needed to ensure that the voice of disabled persons was heard within the argument. There has been a significant shift across the UK, with organisations coming together to campaign and lobby against the trajectory of its legislation and to intervene in court cases. From a human rights perspective, there is nothing in the UN Convention on the Rights of Persons with Disabilities, CRPD, on this matter. In its concluding observations on some of the countries that have provided for assisted dying, the UN committee has strongly said that they are not compliant.

Ms Hall mentioned how Disability Action had not been challenged on its position.

Ms Karen Hall

No.

I find that curious. Is Ms Hall's point that, when she makes her argument in respect of disabled people, it is ignored by those who are advocates of a change in the law in this way?

Ms Karen Hall

It is not ignored. It is being heard more than previously. In 2004 and 2005, the voices of disabled people were not heard in the early arguments and pushes for legislative change. Their voices are being heard more now and cannot be ignored. It is a question of how we value disabled people's lives.

I thank Ms Hall.

I thank Ms Hall for her presentation. It is difficult to argue with and challenge it. Ms Hall can see from our responses that we are trying to think of what questions can be asked. Regarding compassion, and if someone presented to Disability Action who was in agony, had an horrendous quality of life and had made the decision to go because he or she could not live like that anymore, how would Ms Hall feel about that? This person wants to go because he or she cannot stick the physical pain anymore and knows that he or she will go anyway. There are many illnesses. If someone with terminal cancer has, for example, rheumatoid arthritis, the pain is unbearable and can drive a person insane. What would Ms Hall's feelings on that be?

Ms Karen Hall

As anybody who works with disabled people and has lived experience of disability knows, those situations can be encountered. I am thinking of a particular case where someone had expressed that desire and had the capacity to decide. However, the level of support given to that person on an individual basis had not been enough. With an increase in support, including medical support, independent living and other services, that person changed perspective over time.

This is a question of why we would change the law for a small number of people when there is a risk of abuse for a larger number.

The determination of Disability Action's policy position dates from 2010, but I want to get a sense of it. Was there a debate? Were there a variety of views?

Ms Karen Hall

Yes.

Was it a majority decision? Has that dynamic changed in any way in the intervening years?

Ms Karen Hall

There was definitely a debate. There is still some belief that we need to examine how society could ever get to a point where this would be possible. During the debate, people were informed by what they were hearing in the media about certain high-profile cases. That was people's awareness of what was happening. After we reduced it to the level of the new guidance that the Public Prosecution Service had published for consultation and some of the information in previous draft Bills though, people had a clearer understanding of what was being discussed in the proposed legislative changes. It was no longer all down to what they were hearing in the media. That helped to inform our position and make it more solid. It has strengthened over time.

I thank Ms Hall. That is a very important insight into the disability sector in the North of our island. I wonder whether that is replicated here. Do they mirror? That is something that Ms Hall may not be able to answer. We will have to delve into that ourselves.

Ms Karen Hall

It is a difficult and challenging debate to have.

Yes. This committee is more aware than most that the writing of the report and even the working out of the recommendations will perhaps be challenging in itself in terms of our own discourse on it. Time will tell. I thank Ms Hall for attending. She has travelled to be with us.

We are very grateful to Ms Hall for her participation and contribution.

Ms Karen Hall

No problem.

We wish Ms Hall a safe journey home. I remind members that the Select Committee on Justice and Equality is due to meet tomorrow at 9 a.m.

The joint committee adjourned at 11.50 a.m. until 9 a.m. on Wednesday, 6 December 2017.