 Good morning and welcome to the second meeting in 2015 of the Health and Sport Committee. I would ask everyone in the room to switch off mobile phones. I'm not necessarily because they sometimes interfere with the sound systems, but you will note that some of committee members and clerks are using tablets and that's instead of the hard copies of our papers. I have apologies this morning from Richard Lyle, and I welcome back Graham Day as the SNP substitute. I have also apologies from Richard Simpson, who unavoidably cannot be here this morning. Patrick Harvie, welcome Patrick, who joins us for agenda item number three. The first item on the agenda today is a decision on taking items in private. I invite the committee to agree to take item five in private today. Item five is consideration of our work programme, which we would normally take in private, as the committee agreed. Thank you for that. Agenda item number two is subordinate legislation, and we have one negative instrument before us today, sports ground and sporting events designation Scotland amendment order 2014, SSI 2014, backslash 374. There has been no motion to annul and delegated powers and law reform committee has not made any comments on the instrument. I invite comments, if any, from committee members. I don't see any committee members wishing to make any comment. Is the committee therefore agreed to make no recommendations? I thank you for that. We now move to agenda item number three, which is to continue our stage one scrutiny of the Assisted Suicide Bill. This morning, we have one round table on ethical issues, and as usual with round table, we invite the witnesses and committee members to introduce themselves. I should first speak to Dr Mary Neill, the committee's adviser on the bill. Bob Doris MSP and I am deputy convener of the committee. I am Robert Preston and I am director of the think tank living and dying well. Mike Mackenzie MSP for the Highlands and Islands region. David Jones, director of the Anscombe Bioethics Centre. Good morning, Dennis Robertson, SNP member for Aberdeenshire West. My name is Callum McKellar and I am the director of research of the Scottish Council on human bioethics. Colin Keir MSP for Edinburgh Western. Stephen Smith, I am a lecturer-in-law at the University of Birmingham. Nanette Milne MSP for North East Scotland. Good morning, Graham D, MSP for Angus South. Good morning, I am Graham Lawyer for Glasgow. Rhoda Grant MSP for the Highlands and Islands. Patrick Harvie MSP for Glasgow, member in charge of the bill. Thank you. Duncan McNeill MSP for Guirnton and Verclydon, convener of the Health and Sport Committee. I should point out that Professor Sheila McLean was unable to be here this morning, but I think we are hopeful that we will participate in some future stage. Bob, can you kick us off please with some general questions and then we hopefully we can encourage the participation of the panellists? I am going to keep it deliberately general and we will come back in later with some specific questions about the bill. One of the themes running through our briefings in preparation for today's evidence was how we determine autonomy or independence of individual within society and the choices they make and the balance between those individual freedoms and choices and the role of the state to protect and whether any individual can be truly autonomous and free from, say, pressures from family, financial pressures in terms of treatment choices and autonomy to make a full choice based on treatment options available, on the level of palliative care. It is where the individual sits within this bill and exercising what would be their rights to autonomy or whether there is the reasonable interference or intervention or protection of the state towards that individual. There are constraints upon autonomy and freedoms and in terms of ethical issues that seem to be central to it and hopefully some thoughts on that initially before we start to look at the details in the framework of the bill would be helpful and I deliberately not use the word moral during any of that but I do also appreciate that moral considerations will be a factor for many as well. If any of our panellists wish to assist us in kicking this off, Professor Lauri, thank you. Thank you very much for the question. I think that is absolutely crucial here to ask the question. What does it mean to take an autonomy approach to assisted dying? Particularly if you look at the existing legal and ethical framework within Scotland and the wider European context, it is very much centred on the respect agenda, the notion that individuals are autonomous, have the right to self-determine for themselves and even in the context of the European Court of Human Rights, for example, back in 2002, in the case of Diane Pryty, they recognised that decisions about when and how to die actually do engage your human rights. The onus is therefore on the state to show why it has to interfere with that and it has to be able to demonstrate that it is necessary and proportionate in order to do so. In the case of Pryty, for example, they were able to make an argument, the UK government was, that it was necessary and proportionate to protect vulnerable persons. The important issue for Scotland is that the onus is on the Scottish state in order to justify its current position. We do not have, for example, the suicide act in 1961. The legal position with respect to assisted dying is not clear. I think that Scotland is going to have to take a decision somewhere or the other as to how it actually approaches assisted dying with respect to these sorts of decisions. If Scotland were to move forward with respect to a bill like this, the protections of the autonomous nature of the decision must be absolutely crucial. The safeguards that they have in place here, the three-step approach is helpful. Arguably, however, it might be too onerous. There's a question about whether or not the first stage, this idea of having to make a declaration and then two subsequent requests is actually too much to ask of an individual. The fact that there are medical colleagues involved in assessing capacity is important, but I think that we'd also want to make sure that the capacity definition was the same as we find in other legislation in Scotland, so we're not dealing with two different systems of assessing autonomy. Finally, with respect to the idea of whether or not somebody was subject to coercion, I would like to see in a bill like this if it were to go forward some provision that made it clear that if somebody were subject to undue coercion from family or somebody else with a financial interest, that would actually be subject of a criminal prosecution in due course. That's not something that's currently featured in the bill. Mr Preston. Yes, no one can be truly autonomous in a society unless we're living on desert island. The autonomy of the individual has to be balanced against the rights of the majority, against the rights of other people, not necessarily the majority. This brings the question down very much to a question of safeguards. If one were to licence certain people in certain circumstances to assist the suicide of other people, other people have to be protected, and that brings the debate at once on to the question of safeguards. The bill itself is quite conspicuously lacking in any serious safeguards. It's very long on bureaucracy, but quite short on actual safeguards itself. For example, there's a lot of form filling that's needed, a lot of witnessing and form filling, and two doctors have to be of an opinion to the best of their knowledge that certain conditions apply, but there are no processes prescribed, which those doctors have to go through, to establish as objectively as they can whether those robust safeguards can be put in place. The bill is full of aspirations on this, but it doesn't actually prescribe any processes to ensure that the safeguards are met. Professor Jones. On the autonomy question, I think it's important in thinking about assisted suicide that it's the assisting, so it's not actually... That's what we're dealing with, we're not dealing with suicide, it's not a discussion of the legality of suicide, it's a discussion of the legality of assisting suicide. So it's not simply about the autonomy of an individual, it's about the responsibilities of someone who is not that individual with respect to that individual and their decision making process. So we're talking about if somebody comes to you with a request, a suicidal request, how do you respond to that, and what are the implications about how you respond to people more generally. So it's already outside the individual, we've already moved from the individual to thinking in general, if I respond to this person in this way and to another person in another way, why have I responded differently, and what are the implications about how I respond to society generally? Because it's about the assisting person. That's what the bill is about. The bill is about legalising something that I could do as an assisting person. So if you're talking about autonomy, it's actually the autonomy of the assister that's in question here, and whether people should have the right to assist somebody else to kill themselves. That's actually what we're dealing with. The right to assist somebody else to kill yourself is already something which is relational. So the move to the relational isn't something which is artificial. The move to the relational is already there. And the question to ask, I think, is what are the decision making processes that people go through in terms of assessing that in these circumstances it is unreasonable for someone to want to kill themselves, and we should have a suicide prevention strategy and we should be choosing life and that kind of thing. And in these set of circumstances, it's reasonable for someone to want to be ending their life and therefore assistance would take a different form. Because that's not what they're doing, that's what I'm doing as the assister. And that has implications for what society is doing in terms of the values it puts on different kind of people. So already we've gone beyond autonomy. Dr McHale and then Dr Smith. In medical ethics and in medical law, we spend a lot of our time trying to defend the autonomy of patients. We do this in biomedical research in any surgery and so on. We're trying to make sure the person knows what is happening and can make the decisions for themselves. However, there are some very rare cases where autonomy cannot go first. For example, a person could never sell themselves into slavery even in Scotland. And I believe that this is one of the cases assisted suicide where autonomy has to go second to the whole concept of inherent human dignity. Why can't a person sell themselves into slavery because of inherent human dignity? Now, Mike, when I gave submission to this committee, I talked an awful lot about inherent human dignity and that is inherent value, worth and meaning of life. Now, when a society starts to say that certain persons may no longer have this value, worth and meaning in life and that we accept it as part of society, that assisted suicide should take place, that a Scottish Parliament should accept that there are certain persons in Scotland who no longer have this meaning, value and worth. I believe that it undermines the whole concept of inherent human dignity. And as an inherent human dignity, that is the very basis of our civilised society and of the Scottish Parliament. There are some very rare cases when autonomy undermines the whole concept of inherent human dignity and that's what it becomes dangerous for a civilised society. I think I want to start by taking us back to the original question. Use the words truly and completely in your initial question. Can somebody be truly autonomous? Can somebody be completely autonomous? I think that initially means we've got to take a step back and actually look at what autonomy isn't this sort of atomistic idea that everybody has that I get to choose for myself and nobody else has any say in it. No autonomous decision works that way. You can't make an autonomous decision that way. There are always influences on our life, whether that be people talking to us, friends and family, financial implications, there are always issues that affect whatever it is decision we make. We don't make decisions unfettered from everything around us. So if we're going to talk about an autonomous decision we need to be clear that an autonomous decision isn't merely an individual acting alone separate from the rest of society. They don't act in that way. What we mean, I think generally when we talk about autonomous is this notion of authorship, that our life is our own. I get to decide how my life operates. I get to make the decisions that are important to me and how I see the world and how I see my place in the world. I don't think that that is, in fact, different from the notion of dignity you're presenting. I don't think it's in conflict with it. I certainly don't think it's in conflict with it in this particular case. The notion of inherent human dignity, if there is such a thing and I'm generally a skeptic about the notion of dignity to begin with, but to the extent that this notion of inherent human dignity that we all matter because we're all individuals, that's because I get to have some authorship. We don't expect everybody to act lockstep in the same way. If we did that, that isn't respecting dignity, it's not respecting autonomy. The two notions of dignity and autonomy are not necessarily in conflict and I'm not convinced that they're in conflict in this particular case for that reason that this idea that we have in some inherent human dignity seems to me based upon this notion that we are the authors of our own life. If you've ever read a book or seen a movie or watched a play, the ending matters. There are sometimes really good books or really good movies and you get to the final 10 minutes and the whole thing falls apart and you go, oh man, that was a bad movie. It's not a bad movie because of anything other than the last 10 minutes. Endings matter, they matter to the story, they matter to the authorship in the way that the rest of the story does. A bad ending is just as bad as a bad beginning. If we're talking about autonomy and dignity, we have to, I think, see autonomy in less atomistic terms I think of this notion of an authorship. Thanks for that and I think the panel members are anxious to get back in. Mr Preston and I think Dr McKellar wishes to come back in. If autonomy is the driving force of the bill, I think one is entitled to ask why is it restricted to assistance with suicide. What about, for example, the autonomy of people who are not able, even if they're supplied with legal drugs, for example, to take their own lives? Why are we having this restricted form of autonomy? As a second point, we have to consider the impact of legislation on social attitudes and social attitudes are very strongly connected with ethics. As a society, we treat people who attempt suicide with understanding and compassion. But as a society, we do not regard suicide as something which is to be encouraged or assisted. That's what all the suicide watches are about, where people are considered to be at risk of harm. That's what all the attempts to resuscitate attempts that suicides are about. That's what all the suicide prevention strategies that successive Governments both north and south of the board have introduced. That's what they're about. Finally, we have to look at another aspect of this. I think that the trouble with the focus on autonomy is it tends to present the law as something which is trying to stop you doing what you have a right to do. The purpose of a law which restrains us from assisting other people's suicides is to protect vulnerable people. A law which says that people who have certain medical conditions may be given assistance with suicide may have been framed with the best and most altruistic intentions in mind. I'm sure that's what's behind this bill. But it is in effect saying that the protection which the law gives should be different if you have certain medical conditions from those who don't have certain medical conditions. And it is arguable that a law like this could very well send the message if you are chronically or terminally ill. The law will offer you less protection than if you're not chronically or terminally ill. Dr Smith said the link between autonomy and inherent human dignity. I believe inherent human dignity cannot be restricted just to autonomy. I'm a scientist originally and from a scientific perspective everybody here is a pile of biological cells. That is all we are. That is all we can prove that we are. But we are more than that. We believe each one of us that we are more than that. We believe that we have value and worth. But it's not down to autonomy. It is because we have, we believe in each one of us that we have value and worth that we actually respect the autonomy of others. Now in the past history of humankind there were certain persons that had full autonomy but which the state refused to give value and worth. So autonomy cannot be the basis of inherent human dignity. It is only because of inherent human dignity that we respect the autonomy of others. And this is actually reflected in the European Convention on Human Rights. Article 2 of the Convention states about the worth of life, the value of life and that is why it should be protected and respected. It's only in article 8 later on that the concept of private life comes in and the concept of autonomy. Now I understand that for a lot of people this concept of inherent human dignity is extremely difficult to determine. There is actually no definition of inherent human dignity in the Council of Europe which is responsible for the European Court of Human Rights. There is no definition of even a human being either in the Scottish Parliament or in Westminster. But we all agree and we've got to agree and we cannot prove this that we all have this inherent human dignity which is the basis of the fact that we all have equal rights, an equal value and equal worth. Autonomy goes up and down with persons. There are some people in Scottish society who have a lot less autonomy than others. There are certain people in Scottish society who have a lot less quality of life than others. But they have equal value, equal worth and equal meaning in life. And that is based on inherent human dignity. Thanks. Any other? Don't touch math. I'm not sure I ever said that dignity and autonomy were the same thing. I said that dignity and autonomy were linked in this particular case. I'm happy to accept that dignity and again I'm a skeptic about the notion of dignity to begin with. But I am happy to accept whatever it is we mean by dignity it is a separate thing from whatever it is we mean by autonomy. That's fine. But that doesn't mean in this particular instance they aren't linked. So having something linked, having them be connected, having them be in some sense mutually supportive which I think they are in this case in no way indicates the same thing. I think to the notion that we are all individuals we all have individual moral worth is fine. I am happy to accept that. I think that's because we allow people to make decisions. At least in part. So it's this notion that we are all individuals and I'm not convinced that being able to take away decisions from people to say to them well in this particular instance we do not like your decision so we're not going to allow you to make it. Is in fact representative or of this notion that we all have inherent moral worth. People make decisions we don't like all the time. And as a consequence we have to accept that's the whole reason we have a society is to allow people to make decisions that we don't agree with. Doctor McKill, I will but I've got another couple of panellists and thanks for your full participation here that MSPs could get a morning off here I think. Professor Laurie and then Professor Jones, thank you. Just to follow up on this discussion about the relationship between autonomy and dignity or not and just to remind the committee that the previous version of this bill had dignity in the bill and I was one of the people that actually argued very arguably strongly against that because for exactly this confusion I don't think it's helpful as a legislative device I think it's actually problematic and one of the advances that this version of the bill is making in my view is it is focusing on a notion of autonomy it is exploring it inviting us as a Scottish side to explore it as an aspect of the respect agenda and it is about the choices that individuals make that are able to make it so there is another question if it is about autonomy about who qualifies so at the moment it's focusing on life shortening and terminal conditions but what about people who are in excruciating pain but whose life isn't short that's a very very good question to ask but it doesn't mean to say that it has to be a question that has to be addressed in the first situation of any act that we're passed one thing I would argue very strongly for and our institute has said this in our submission there needs to be regular review argue with a periodic three year regular review and one of the things we'd be asking exactly that question but whether or not the notion of autonomy that's being embodied in law is an appropriately inclusive one but politically experience would indicate that you have to be cautious at this first stage and I think that's what this represents Professor Jordan to take the opportunity to agree with things that Dr Smith and Professor Laurie have said in their submissions and here and make some qualifications but mainly to agree one thing to start with Professor Laurie in the J. Kenyon Mason submission one of the things I think was argued very well was that the consistency of saying that you will only have this for over 16 year olds and it won't be available for people under 16 is open to legal challenge in the future and so if you pass this bill if this parliament decides to pass this bill you shouldn't believe that what it says on the bill is what will actually happen come future legal challenges and that's because of the consistency of the law and that's because of the logic of the bill so the logic of the bill is such that if it applies to people who are in a particular category and if that's based on a right then you say well why do you if why is this right excluded from mature miners and I don't think that's unsustainable and I also think that's why it is worth looking not just at the bill but also what are the logical implications of the bill in terms of further down the line and in exactly in respect to mature miners I'd call people's attention to Belgium which in 2002 legalized a form of assisted dying euthanasia so it's not exactly this form but legalized euthanasia in 2002 for over 16 year olds and then in 2013 extended the law to miners with no lower limit and that was precisely because of these kind of arguments and I noticed also that Margot Macdonald in her memorandum said she hoped that there would be a chance to revisit after the experience people had had of the legislation and you said in God to review that this would need to be reviewed I think that if you're concerned at all about the principle of some of the sort of underlying principles of this bill then it is worth thinking not just about what is on the face of the bill but what it are logically connected to the face of the bill and what might be further down the line because that's actually what would be voted for what would be voted for is things that follow and I was going to agree with something well I'll just say very quickly because other people want to get in but I completely agree that it's important to make decisions in life that the end of life is very important for people and that people should be involved in the decisions that they make and that's true also throughout life and it's true at the end of life and I also agree with you in your submission that there are connections and it's useful sometimes to see assisted suicide in relation to other end of life decisions but also with regard to other end of life decisions though we have a right to refuse interventions we don't have a right to demand interventions irrespective of what the medical establishment and society in the particular doctor think would be beneficial in this instance so with regard to other kinds of decisions we don't have full autonomy that our autonomy is restricted in terms of not only what we're doing but what people are doing with us and for us and around us and again I'll come back to the point this is not just about it's not just about my decisions I have a right to make my decisions it's about other people's decisions in respect to me and what's the logic of those Let's just say a few words Down in London the human fertilisation and embryology authority that regulate everything relating to human embryology they regularly have horizon scanning sessions and they define it as a systematic examination of information to identify potential threats, risks and emerging issues and opportunities so maybe this is an area where we can have a horizon scanning if this bill is legalised what would happen in the future now this bill is based on three things autonomy quality of life and dignity on the basis of autonomy if a person at the moment the bill is restricted to persons who are ending their lives but on the basis of autonomy a person who is tired of life should rationally be also able to end their life and it is something that is already happening in the Netherlands people who are tired of life on the basis of autonomy are also accessing euthanasia on the basis of quality of life then of course this bill is restricted to people who believe that their life has no quality and that they are dying but a lot of people who are unconscious who have never been conscious also may have an extremely poor quality of life in the future from a rational perspective the bill should also be extended to them so if we legalise this what are the consequences from a rational perspective of extending the scope of applications to other situations that is a question and that is a question that we should look at I think Belgium and the Netherlands are slightly a red herring Belgium and the Netherlands have what are out and out euthanasia laws but their laws are based upon a different foundational claim than the one that is being talked about in this particular bill Belgium's law is based on the Netherlands law the Netherlands law changed in about 1984 and that happened on the basis of a notion of unbearable suffering so the first case in the Netherlands which dealt with this is an instance where somebody helped I think she was a doctor but it was her mother she was helping but she the defence to the murder charge was a defence of necessity that essentially she had two ethical duties her first ethical duty was to deal with the unbearable suffering of her patient the second ethical duty was not to kill her patient those two were in conflict in this particular case and therefore she chose the duty of helping prevent unbearable suffering that was a duty not to kill that was a necessity defence it's a defence and in fact the entire Dutch system is based upon the notion of unbearable suffering as a consequence when Belgium basically decided to do similar things their notion of euthanasia is again based upon this idea of unbearable suffering as a consequence when we get into these claims about well what will happen if it comes into effect there are going to be different logical implications of that the logical implication of unbearable suffering is unbearable suffering will happen whether or not you're autonomous or not that's perfectly understandable if the notion is based upon autonomy which is what this legislation or what this bill is what the Oregon legislation is in Washington those are based on a notion of autonomy those have different implications so you're saying well if somebody's suffering unbearably but unconscious or a suffering unbearably but doesn't have the capacity to tell us shouldn't they be entitled to the same thing well no because it's not an autonomous decision if the decision is based upon some notion of autonomy and you don't have the ability to make an autonomous decision then it simply doesn't apply in that particular case we for example do not allow people who lack capacity to get married because even though they may really like the person but lack capacity it requires an autonomous decision in the same way that this bill does as a consequence I think we need to be careful about extracting what the Belgians have done or what the Dutch have done to what might happen here if you're going to do that you've got to pay attention to the whole system is radically different than the one that's being proposed in this particular case The brief comment Dr Smith is right that the laws in the Netherlands and in Belgium are based on in the case of Belgium I think the patient has reached a futile condition in the case of the Netherlands there is unbearable suffering but this bill is also based on the concept of unbearable suffering if you look at the words of the declaration at schedule 2 the applicant says I have reflected on the consequences for me of the consideration set out in paragraph 6 and that is that I have an illness of the condition set out in paragraph 7 and in the light of having done so I have concluded that my quality of life is unacceptable in other words there is a judgment being made not simply about autonomy but a judgment which is partly on the patient's ability or perceived ability to accept a certain quality of life Professor George I was going to make the same I actually have the same position the quotation in front of me but I just to extend it and not only does the patient have to say that but the doctor has to say that the patient is being reasonable in saying that so not only does the patient have to say not just that they're being autonomous but that they're being autonomous in relation to what in relation to ending their life and why well because their life involves some kind of we might call it quality of life is unacceptable rather than bearable suffering but this is playing with words it's about the quality of life of the person and that's something which the doctor is being encouraged to make a judgment on the reasonableness of that judgment and that's the ability of the doctor to make that judgment means that the doctor could make the same judgment with respect to somebody who had not requested that is to say if the doctor can say of this person yes I think that your decision your claim that this quality of life is unacceptable is a reasonable claim if the doctor can do that then for someone who is not able to annunciate so make a reasonable decision about whether this is a reasonable quality of life whether this quality of life is acceptable because the doctor is being encouraged in this to make judgments in relation to quality of life judgments the reasonableness of quality of life judgments otherwise anyone without any qualification could say I would like to have a license for suicide and the doctor would just have to say yes you can have suicide without any qualifications why are there any qualifications there are qualifications because some claims are thought to be more reasonable than others and some claims about what is unbearable or likely to be unbearable or in the general field of it would be reasonable for someone to say that quality of life is unacceptable whether other kinds of claims are not their expressions of depression or other kinds of expressions can we move on slightly just a wee bit in terms of the discussion that we have it maybe takes us to that area of ownership and whose life it is and very strong emotions when people think about the end of life and the difficulties it's my I own this body and it's my decision to to make so it's not just autonomy allowing somebody permission people think at that point in their lives and all they've got left it's very important that it's recognised it's their life they own that do we have any comment on that Graham I'll always go to the panel first but I've got a couple of bits for others to take a minute to move on as well it's my life my body I own it my decision Robert Preston I'm repeating a point that's been made already and that is that if you believe that your life is your own to dispose of as you wish there's nothing actually stopping you doing that at the moment what this bill is about is not about legalising suicide it's about licensing somebody else to involve themselves in bringing about your death that's a totally different matter that's fine Dr McKayla I agree with Mr Preston what this bill is about is not about unfortunately people committing suicide and that does happen what this is about is the Scottish Parliament, the Scottish society accepting assisted suicide the Scottish Parliament and the Scottish society accepting that some lives no longer have any meaning worth and value and that is the problem now people do believe and I agree with them their life is their own and the kind of dignity that is mentioned in this bill is also their own it's the kind of dignity of self respect the kind of dignity that says well the way I see myself is important and becoming dependent on others is a kind of loss of dignity that kind of dignity is what we call non inherent dignity now there's lots of different kinds of non inherent dignity a high court judge is given non inherent dignity but if this high court judge then has a fight outside a pub he loses this non inherent dignity so non inherent dignity can come and go however the whole concept of inherent dignity where everybody has inherent value worth and meaning belongs to society it does not belong to the individual and once you start to see as a Scottish Parliament this kind of inherent human dignity can be lost where do we then go so it does not belong to the individual inherent human dignity belongs to the whole of society it makes this whole of society civilised and I would argue it's the basis of this Scottish Parliament Laurie and then Dr Smith in many respects the current legal position embodies what you said chairman about this idea it's my body it's my decision because we have an absolute right in law to refuse medical care whether we have good reasons bad reasons no reasons are irrational reasons as long as you're competent you can refuse now the idea however that that's only morally implicates the individual who refuses is a nonsense I agree with colleagues around the table it's really implicated in that refusal so all the decisions that we take in our life are necessarily involved with others what's being asked here is whether or not the moral decision actually should be extended to those who might be able to assist us in taking decisions where I say I refuse but I can't necessarily obviously the final act has to be mine in the context of this legislation but nonetheless is there a meaningful distinction between some of these acts and omissions there's a lot of discussion about actually the fact that many of the times that distinction is in the relevant one so if we're recognising the fact that people can refuse and can die because it's their choice to do so the question is whether it's morally consistent and not to also reflect situations such as this whereby people can be assisted to die I'm a little and I hear this frequently but it's always slightly confuses me this notion that if you make a decision that you want to die whatever reason it is you wish to make that decision particularly in these contexts that you're deciding somehow that your life ceases to have value and dignity that strikes me as not in fact what lots of the people who engage in this particular practice are in fact saying what they're saying is because my life has value and dignity I want it to end because if it continues it will be worse and again to go back to the notions of stories and movies and plays we don't object to the fact that they don't go on forever they have to end at some point the notions that my life at this particular point in time for whatever reason is unbearable or I do not wish to continue to have it exist does not mean that they think it ceases to have value what it means is the value that they're placing on it is that it's over now I've reached the end of the journey it's time to stop that doesn't strike me as a notion that I've lost value in it it doesn't strike me in the notion that I've lost whatever it is inherent dignity I'm also I think particularly concerned that this notion that inherent dignity is owned by society and not by the individual that I'm not quite sure I see a legal or ethical basis in that claim and I certainly don't it's not one I would particularly agree with because I don't society is a collection of individuals and if society decides these are the things which have inherent dignity that strikes me as a very dangerous path Dr President then Mr President then Dr McKellar something that Dr Smith said made me think we may perhaps have been going along the wrong tack here he said that there seems to be an assumption that anyone who under the terms of a bill such as this would want to end his or her life somehow believes that his or her life does not have dignity or worth that is certainly not my point of view I can't speak for others around the table I have no doubt at all that anyone or perhaps most people who did apply under this bill may well want to go on living but decide that the time has come to die I'm not questioning the motives that's not the point the point about this is that if we are going to give individuals a right to have assistance from someone else to bring about their death we have to be sure that that will not impact unfavorably on other people other people could be brought under pressure to be made to feel that this is the thing that they should be doing there's been discussion about decisions to refuse treatment including life sustaining treatment when a patient refuses life sustaining treatment that is not the same thing as saying I wish to die most patients who refuse life sustaining treatment are refusing treatment they don't want the treatment to go on they accept death as a consequence as a probable consequence of refusing treatment there's a distinction to be made between accepting death and bringing on death what this bill is proposing and this is the rubicon that it's crossing what the bill is proposing is that some people should be licensed to take action deliberately designed to bring about the deaths of other people it has never been a defence in law against murder for example that the victim consented the bill is crossing an important rubicon there on it's crossing a rubicon which you can defend with ethical arguments on both sides but it's crossing a rubicon which actually flies in the face of social attitudes to suicide I see you indicating Dennis but I've also got Graham Day and Patrick Harvie when it's appropriate after the member and I propose to after Dr McEarl's response to take another question from Graham Dave, that's okay Dr McEarl Just to come back to something that Professor Lori said a good example where relational values as seen would be in a hospital where there's two persons who are very very sick from the same disorder and one person says I want to die my life has no meaning left and then access is assisted suicide in this case but what kind of messages then that gives to the person in the next bed who might be suffering from exactly the same condition or even a worse condition than that and I struggle to understand what you were saying just at the end for me inherent human dignity has a very strong relationship with the meaning of life now if somebody knows that they have worth value and meaning in life why on earth do they want to end their life that there's something contradictory there and this is something that is also reflected in one of the big campaigns that I believe it was the Scottish Parliament initiated it enough to choose life campaign in Scotland this is trying to reduce the very high suicide rate amongst men in Scotland and what the Scottish Parliament what the Scottish society doing is it saying you think your life has no longer any worth you want to commit suicide but we as a Scottish Parliament as a Scottish society actually disagree with you we believe that even though you might be suicidal your life still has meaning your life still has worth and that is why the Scottish Government has sent right around Scotland suicide prevention co-ordinators to try and reduce this incredibly high rate of suicide and that is why Mr Clegg even just yesterday was trying to reduce the very high rate of suicide in England as a society we believe that every single life every single life no matter how valuable no matter how close to death they are has this equal inherent value, worth and meaning and I think as a society we must believe that as a Scottish Parliament we must believe that Graham Day Thank you convener I pick up on Mr Preston's point first of all surely what the bill seeks to do is bring about guidance of unbearable suffering rather than the point you made I'll just put that out there Dr McKellar's point about looking to horizons I understand that perfectly but perhaps there's a danger that we're really missing the point here if we strip this back what we would be doing potentially if we rejected this bill is saying to people with terminal conditions that they must suffer unendurably because we say they should and we would we wouldn't be imposing that judgment without ever being in the position of understanding where they're coming from I don't think we can dock that issue even if it suits us to do that so the question I'd like to pose is do we have the right as a society to say that to people It's to the panel but if you wish to respond first Mr Preston Thank you, on a technicality may I just pick up a point you made you said people suffering from terminal conditions this bill is not about terminal conditions this bill is actually about chronic and terminal conditions if you read the provisions of it you simply have to have a progressive and life shortening illness there are hundreds of thousands of people there can't be a street in Scotland where there isn't somebody in that category but if I may say so you're turning the argument on its head here you're saying that if we don't have a law like this you are compelling people to suffer now I accept that in certain cases then it may not be possible even for modern medicines to find pain relief or other symptom relief that may be the case in some cases though it is increasingly not the case as medical science advances but you cannot therefore say well in that case you are forcing people to stay alive and suffering we must change the law the case has to be made for changing the law Dr McKaylor then Professor Jones the whole concept of suffering for me is a very difficult one the more you think about suffering the more mysterious it becomes in a way suffering is part of what human beings are some of the greatest human beings in history have suffered an awful lot I don't understand suffering I can't give you an answer to this what I do know though is that and you'll have a session with a belief palliative care consultants later on is that suffering in hospices at least is hardly there physical suffering I'm talking about now there are situations where a person might be very much isolated in some of the islands or maybe some of the training of the general practitioners may not be appropriate where physical suffering does arise and I would not deny that there's a different kind of suffering psychological suffering and again from what I read from the Royal College of Psychiatrists when depression is diagnosed and this depression is encouraging the person to try and end their lives that can be treated not in every case but in nearly every cases what we are actually talking about in this bill is existential suffering the suffering that comes from being afraid of death being afraid of being lonely now that kind of suffering is not medical it's the kind of suffering that we all have faced with the fact that we're all going to die many other things but what I do know is that and I'm going to come back to this concept of inherent human dignity again that cannot it cannot be trumped by suffering because people suffer we all suffer a lot of people suffer a great deal but they still have their value and their meaning and their worth and if we put it the other way around if suffering trumps inherent human dignity then again everybody is different and everybody has a different value a different worth and a different meaning and we cannot live in that kind of society we are all equal it's useful to agree with something else that Dr Smith said in the submission and that's that it's useful to look at what's happened in other jurisdictions and also with the qualification that he added that we need to look in detail because each jurisdiction is different but there are basically five I suppose Netherlands, Belgium, Luxembourg Switzerland and three now states two only with evidence in the United States and with respect to the differences from Scotland and the differences to one another and the differences of legislation they at least provide evidence and I think that we will probably look at the evidence differently but I agree that then we would have a more concrete idea of what we're talking about I think it is a false dichotomy whatever law you're talking about whatever discussion you're having and either we do this or we do nothing so to say people have unbearable suffering so either we change the law or we leave them in their suffering whatever the alternatives are there's more than just two alternatives I think it is the case that there are unmet needs and whatever the state of medical science might be there are certainly unmet needs out there with respect to healthcare in general with respect to people with chronic conditions and also with respect to support at the end of life and certainly more needs to be done and again even if and I would be strongly opposed to it even if the law changed that would still be the case because it would not be the case that everyone who had a bad death decided that suicide would be a less bad death and the problem we will all die everybody around this table will die and the question is how will we best be supported when we die and to what extent will this changing this law address that problem and I think that it won't address that problem for most people I don't think anybody here thinks that most people are going to access this law so most people are going to die and need other kind of support so I think if we go back to Belgium which is one of the countries on my list one of the good things that they did in 2002 they passed two laws at the same time one was about assisted suicide and the other which was a kind of political agreement is that they passed a law about palliative care and they gave a statutory right to palliative care the results being you had increases year on year significant increases of funding for palliative care and they really crept up the table and they did a lot of good work and what happened in Belgium was mixed and some things I strongly opposed having it in Belgium but some good things happened in Belgium as well but what I'd say is don't think that this law is the only possibility on the table with respect to answering the need for people who are suffering with conditions or thinking about their death there must be other things to think about other things to do and I would say that those things often are a priority and we shouldn't be complacent and sometimes I think that people are opposed to this kind of legislation sound rather complacent as though hospitals have it sorted out and you can have a good death that isn't the case for most people they can't access it so it's not just about what can be done in the best case to live this across a society and that's a question which we're going to have to answer whatever is done in this chamber and that's I think the more important question when you're talking about people's suffering for more people Professor Lorry and did you want back in? Yes I think that we're agreeing it's not for any individual, any Parliament or any society to prescribe how somebody dies many people die in many many different ways it's about giving people a small number of people a choice to die in a way that they would determine and one of the examples that we haven't mentioned so far this morning is the Oregon example and I think the Oregon example and their legal framework is actually more akin to what's being proposed in Scotland than Belgium or Netherlands or elsewhere if you look at recent figures from Oregon in 2013 for example fewer than 22 deaths in every 10,000 were as a result of the legislation that's 0.0022% so you're talking about a tiny number of people but nonetheless it's facilitating the choices of those people and how they would choose to end their life and they're not scared of death itself they're scared of a wild death and if you look at the evidence that they've got the evidence suggests as in previous years that the three most frequent reasons why they chose that particular option for themselves were loss of autonomy 93% a decrease in an ability to enjoy well life, 88.7% and loss of dignity as they saw it not necessarily as how it was being defined by somebody else objectively and that was 73% so this bill is about those type of people and giving those type of people the choice that they would want it's not about prescribing for everybody else I wasn't going to talk about Oregon as Professor Laurie has raised it I have to because I'm afraid he's rather adrift here this bill is not similar to Oregon's law Oregon's so-called death with dignity act Oregon's law is limited to people who are terminally ill with a maximum of six months to live it is much more akin to Lord Faulkner's bill south of the border this bill is for people who are chronically and terminally ill we're not talking about the sort of catchment area we have in Oregon here we're talking about a catchment area which is perhaps ten times as large there are huge numbers of people who have the sort of illnesses in this bill we do not know how Oregon's law is working because there is actually no audit system a doctor is required to report that he's done it but that's the end of it nobody actually examines the cases and says whether they've been carried out in accordance with the law now the point I was going to make and I'll be fairly brief about this Doctor McKellar has raised the question of existential suffering and I agree that a lot of the suffering that is involved here is existential it's about wanting control of one's death wanting to die as I want to die and there's absolutely nothing wrong with that at all however there are cases I think where there is physiological suffering as well and here I agree with Mr Dave that there are cases where even the best palliative care can't actually bring relief of suffering I will be prepared to go along with such a law if two conditions were fulfilled first of all that evidence has been presented to me that the law as it stands was actually proving oppressive now I've not seen any evidence on that and it's one of the questions which those proposing laws of this nature seldom address the second one is with a bit if it were a bill like this I would say no if this bill could be tied down if it could be very clear made very clear in the bill that there are serious safeguards not just a doctor saying to the best of my knowledge or in my opinion but actually having to go through big processes to establish that the person met all the criteria I might be prepared to go along with it the bill as it stands is simply not fit for purpose we need to look at all the evidence there's a limited number of countries but there are differences in many ways between this country and Oregon many of them I'm glad there are differences in this country in the state of Oregon but don't just look at Oregon look at Washington which within four years was massively overtaken Oregon already in the numbers but also and here I think I agree with Mr Preston this law is much wider and therefore consideration needs to be given of Switzerland and now Switzerland is wider still so it's something in between but in Switzerland you're talking 500 deaths a year so you're not talking about 70 deaths in Oregon you're talking about 500 deaths a year of Swiss citizens and 200 further deaths for suicide tourists so you're talking 700 deaths a year so a factor of 10 now Switzerland is bigger twice the size of Oregon but it's only twice the size so it's still that Oregon and Belgium and Switzerland have a kind of similar sized countries to Scotland in terms of if you want to look at sizes of population but Oregon is not it won't necessarily go as it goes at Oregon and because of the nature of the legislation I think a lid needs to be lifted of what's happening in Switzerland because there actually is not enough data on what's happening in Switzerland but the numbers are much higher and the safeguards are much weaker but I have great misgivings about the supposed safeguards in this bill so do look at all of the countries where you have assisted dying and make your own minds up I agree with what Professor Jones just said in countries like Washington which has a very similar legislation as Oregon between 2012 and 2013 the increase was 43% which is huge those are the last numbers in places like Switzerland the numbers are going up again we don't have the exact numbers but between 1998 and 2009 numbers of assisted suicide in Switzerland went up by 590% and that's just for Swiss citizens for people coming abroad is quite different and we also see similar numbers going up quite quickly in Belgium and in the Netherlands a plateau yet no we don't know yet where it's going to reach this plateau but at the moment it's going up quite fast and we don't know because as soon as you legalise something with time it starts to become normal it's like I think there was one submission that was mentioning seat belts when seat belts came and it was done through legislation at first it was abnormal but then it becomes normal because time things become normal because things become normal more and more people access what is being proposed also another thing that makes something become normal are just sheer numbers the more people access something it becomes more normal as well so there's a sort of feedback system that's taking place so we don't know what's going to eventually happen in Oregon or Washington we don't know yet it's very important to do some horizon scanning and look at Oregon and Washington and maybe Switzerland as experiments it's experiments to which we don't yet have the results I'm going to try and get a couple of members in in terms of of time there may be similar questions and answers but I'm going to ask Dennis Robertson and when the committee's permission I'm going to skip a bit although I still have members of the committee to ask questions is that okay? I see people nodding Dennis I wonder what could we explore as we mentioned a few times the term coercion and obviously some people are more susceptible to persuasion I think we all are sometimes susceptible to persuasion if there's a good argument but as we mentioned coercion are because Dr Macallar you've mentioned quite often the suffering of the patient and I'm just wondering sometimes if the patient is looking beyond themselves and looking at the impact maybe of their condition and wanting to take their life because they're seeing the impact on others that are caring for them and their decision isn't really based maybe on the quality of just their life but they're looking at beyond that and see an impact that their suffering to your terms is having on others how do we safeguard against that coerced aspect that maybe people can apply on the patients? Thanks for that Dennis there's a whole series of questions around that vulnerability and why people would be coerced a pressure to take decisions Professor Jones I think you've heard the name Professor Preston I don't think it's just about coercion influence is much broader and there's a whole question and if we're anxious about influence that's because the whole notion of assisting encouraging relating to others so we're not again I can make that point but I think it is regrettably in my experience it is regrettably common that people think that other people will be better off without them and that they severely underestimate the grief that people will feel after them certainly with regard to suicide ordinary suicides it is an aspect of suicide that people often think other people will be better off they sometimes think of others they don't just think in a selfish way but it is archetypically devastating to those who are left behind that it has a not in every case not equally but it can have a hugely negative effect on those left behind particularly that the person that they weren't able to help the person that the person you also have not just somebody would be better off but you have this one person thinking wrongly what other people think so the person who is vulnerable making assumptions about what other people think who care for them that there's burden and that kind of thing when it isn't necessarily the case so we shouldn't just think of unscrupulous relatives who don't want the person around and that kind of thing often you have a misperception and a misperception because of dependence and vulnerability about a lack of solidarity and a lack of relationship so that they think that when I'm gone it will be better but depending on how I go it might not be better at all it might actually be much worse and the ability I think sometimes we have to try to let other people care for them and that's not easy and I'm not but it certainly is something that people are an idea people are vulnerable to and they're very vulnerable to all kinds of suggestions I don't think there's anything in this bill for example which would stop a doctor from suggesting assisted suicide as a reasonable option among your treatment options I think in your situation I might consider assisted suicide which would stop this and if it's a normal end-of-life decision it wouldn't be coercive to suggest among a range of decisions this but I think that we have and should have huge misgivings about other people suggesting even suggesting because that suggestion is invidious insidious that's what undermines because all the time you've got this kind of what are people thinking about me would people be better off without me and it's a misperception but it's one which I think people can easily fall into there's a spectrum here there's the arm twisting coercion through to the hints which are dropped the suggestions which may be made to something called care fatigue which relatives do suffer there are an increasing number of people today who are incapacitated who have to be looked after by their families often in those families they need two people working to pay a heavy mortgage one member can't work because the person has to be looked after you can see the situation well I'm going to die in a year, two years time why don't I get it over with now leave my inheritance they're struggling financially they can't be looking after me so I agree with Dr Jones on this spectrum how do you guard against it a doctor assessing this might be able to detect it if he knew the family but do we live in that kind of society my doctor has never been to my house in 12 years if I applied for assisted suicide he wouldn't have an earthly as to whether I was being coerced as to whether I was capable he wouldn't have a chance we don't live in the age of the family doctor who knows whether coercing is taking place or not we have laws not because most of us behave decently but because some of us don't we should remember that to come back Professor Lowry mentioned the three first reasons why people access to assisted suicide in Oregon and Washington actually the fourth reason and this is 61% and these are the last results from Washington because they are burden on family friends and caregivers actually there's also financial one of the reasons and that's 13% is financial implications of the treatment I think in a society we have learnt that in a modern society that being a burden on others is dishonourable but I believe that in our society in Scotland we've got to relearn that to be a burden on others is normal it's acceptable but our society is all about we had an African physician on our council who was from a Muslim and he said that when he was in when he went to his first debate on euthanase and assisted suicide in Scotland he was horrified because for him people who were disabled people who were maybe old and so on were honoured in his village and we've got as a society to relearn that we all started off our lives being completed dependent on others and some of us will end our lives being dependent and completed dependent on others but there is no dishonour and I've got to learn that as well I've got to remind myself that I should be proud of maybe being a burden on others because they want to help me they're my friends and a real society is a society where people are our friends so that's all I wanted to say Professor Laurie and then Dr Smith thank you we clearly can't second guess people's reasons or circumstances whether there would or would not be undue influence all that we could hope for in a legislative framework like this is to put in place particularly type measures in the first round of review and one of the things that I would like to see in such a bill would be an authority that had a clear position to act to review the request to review the reports and to be able to intervene timidly and secondly talking about having the two doctors involved there's no suggestion that they need to be independent of each other so make sure that there's some degree of independence and make sure that in the first period of review Scotland would be able to build up as robust an evidence base but what was actually going on and to review that in due course and then ask what is the evidence actually showing whether or not there is or not being suggestions of undue influence or not and then act accordingly but I would be very concerned if we were to see the likelihood of that when we really don't know We've had some in terms of the law and homicide and subsequent investigations and maybe we go into your nobles or films Dr Smith but it's not unconceivable that suddenly a surprise and inheritance has been found or there's been that and how are those people protected and are they going to face a prosecution for homicide or something in the future because somebody has discovered that there is an unusual inheritance that has been associated with that it was a surprise to people how would situations have that be dealt with after the fact and what sort of possible criminal proceedings could people rightly or wrongly well motivated or not well motivated to bring themselves in after the fact an investigation and things I wouldn't want to speculate on the criminal situation but what I would say is that the passing of this bill is not just about one piece of legislation it's about an entire framework it's about identifying very clearly what is the authority that would be in charge what powers would it have who would it have to work with including of course the Crown Office and others it would also have to work with the professional bodies and structures and the pharmacists I think one of the reasons why we see in this legislation or this proposal for legislation the notion of facilitators is because we know that there is strong reluctance among many sectors of the medical profession not to be involved but of course the bill necessarily does involve them but there isn't any recognition of the fact that there needs to be some sort of conscious subjection I understand that there are reasons for Westminster versus deserve powers nonetheless a framework would need to take account of all of this including the ability to investigate the sorts of issues that you raised there Just on having bodies that regulate or review or that kind of thing there is a real problem here and there is a problem almost on the surface of this bill with the facilitators which is the kind of who guards the guards question and I think one of the patterns across different jurisdictions is you find that people who have previously pushed for legislation then wish to get involved in pushing the boundaries to legislation sometimes through being on the regulatory bodies and sometimes by having organisations which have mobile euthanasia facilities or have I mean very very few cases have been for review in Belgium and Netherlands and certainly in the case of Belgium the most extraordinary cases and there have been some extraordinary cases are by somebody who is also on the review panel and there is a problem if you have review bodies and if I think across England's regulatory structures some of those regulators are quite strict in terms of what they require and others are very close to the people that they are regulating and very rarely refuse and actually try to facilitate in different ways and I think that don't just think about structures on paper but it is a question of who guards the guards and it's not simply we don't know we can have some ideas by looking at those other countries to repeat the question have a look at other countries and see what can sometimes what can sometimes happen in some of these regulatory bodies I agree with that and I agree with looking at other countries I do think we need when we look at other countries it's not just about looking at the limited number of countries in the world which allowed some sort of assisted dying so it's not just about looking at Belgium and the Netherlands and Luxembourg and Oregon and Washington and I think Montana New Hampshire and Massachusetts and the other three it's about looking at how things work in the regulatory state we already have so it's not in lots of discussions about assisted dying it's sort of taken for a given that we prohibited as if that isn't a regulatory state it isn't a regulatory state created by people and there isn't in fact impacts and evidence and downsides to the regulatory state we already have so we need to I think pay attention if we're going to look at evidence and I'm a firm believer we have to look at what evidence there is we also have to make sure that that evidence is about how are things working now as well and that in and of itself causes it can be hard to investigate and as a consequence there's very limited evidence out there but the limited evidence we have doesn't show that the current prohibition is all that great to system either so there is a study from 2002 and it is decidedly anecdotal and a small sample and it's also from Australia and therefore of an entirely different jurisdiction but the incidences that come out of that are particularly troubling on notions of coercion as well that actually what happens is that if you don't have the full and obvious discussions then people dismiss doctors or they end up going down routes that nobody ever wants to see anybody go down coercion happens under whatever regulatory system if you're expecting whatever regulatory system the Scottish Parliament is going to come up with whatever it comes up with is going to be perfect I hate to tell you it's not going to happen there are always going to be incidences of abuse there are incidences of abuse in any legislation anywhere in the world the question becomes how can we limit those incidences of abuse how can we make the legislation as good as it possibly can be so I'd echo everything professor Laurie said about making sure there's an investigatory body making sure that investigatory body has particular powers which aren't in Oregon and we've got to pay attention to things like communication one of the things that I think I have particular concerns about with this particular bill in relation to coercion is this 14 day period that you've got 14 days to use the prescription and that to me strikes me as a fairly coercive incidence what happens in there's evidence from it in Oregon there's evidence from it from the Australian study I just mentioned that what lots of people end up doing in these sorts of cases is they want the medication but not to use it they want the medication to have it and to be able to make a decision every day essentially to wake up in the morning and say no I'm good I don't need this today and that that is in fact the life affirming measure for them I don't think that would happen in all cases I don't think that would happen in majority cases I don't think that would happen in even a significant minority of cases but it does happen from the evidence that we have and therefore if we're going to talk about things like coercion and I think it's important to talk about coercion and vulnerability we have to pay attention to the coercions that exist under the system we've already got Mr President I'll be very brief because I know that you want to bring members in but I agree with Dr Smith that the 14 day period in which you must use lethal drugs is silly, I mean that should go but that is a form of coercion I agree but if you look at the medical practitioner's statement which is drafted with the bill to the best of my knowledge he, she is making the request voluntarily and has not been persuaded or influenced by any other person to the best of my knowledge is that really good enough when coercion is there I mean, you know, I come back to the point I made earlier, there are no processes in the bill for making sure that it is safe there are only aims Thank you Kamina, it's extraordinary how in a session like this simple questions can give rise to very very complex and lengthy answers that was probably inevitable with this session I wanted just to briefly pick up on a couple of areas where I think there may be misunderstanding or I'm sure not a deliberate attempt to misrepresent what's in the bill but comments which could be misinterpreted in terms of what's in the bill for example, there have been various statements about people being licensed to take action that brings about someone else's death that's very clearly prohibited under the bill we're talking about assistance to allow someone to take their own action at the end of their life this notion as well that value, dignity worth and quality of life are the same thing they're all important concepts but they're different concepts and I think it's important to restate that dignity is not defined in this bill we talk about a judgement that a person makes about the quality of their own life and it was also I think implied at one point that this bill could apply to people who haven't made a judgement about the quality of their own life including people who are incapable of doing so because of unconsciousness that's also very clearly not set out in this bill I'd like to ask two questions one specifically to Dr Smith and one more general one the general question is about the kind of comparisons we might make to other ethical considerations because autonomy is not an absolute concept in any of our lives and because we are all as Dr McKellar said reliant on one another we all depend on one another as part of a society every day of our lives these ethical considerations will become complex particularly in the provision of care to people at the end of their lives or people with complex needs but that's not the same as a comparison with suicide in other circumstances when Debbie Purdy died recently there can be no doubt that she wanted over a long time campaign for assisted suicide that wasn't available to her and the only option she had was to refuse nutrition she effectively starved herself to death she said very clearly but I am dying there's a difference between taking control of a process that is happening and suicide in other circumstances surely the comparison we might make with other ethical considerations are around the proactive actions that people may take in assisting someone to make a decision for example to refuse treatment placing a do not resuscitate note that is an action that someone would take to assist someone else a patient in giving effect to their own decision we heard last week about the comparison with a patient coming off dialysis and the knowledge that they might die within days in that context there are other circumstances perhaps rare where someone might choose to participate in an experimental drug trial in the full knowledge that it's not going to give them any particular benefit in hasting their death but it could generate research data that surely gives rise to a far more complex set of ethical considerations which have a closer bearing on the one that we're talking about today than with suicide in other contexts and the specific question that I wanted to ask Dr Smith is about the comment he's made on the 14 day period and whether that could itself be perceived as a form of coercion or it could have the same effect as a form of coercion the affirming effect that you described in having access to the drug having a prescription on hand and knowing that each day you might wake up and think I can get through today I don't need it today can I ask whether you would be convinced that that's due to the physical presence of drugs or in the house or in the building or is it due to the knowledge of control the knowledge that the decision rests with the person and that there are people there willing and able to give assistance for a person to give effect to their own decision is it about the physical presence of the drugs or is it about the knowledge that the decision is there in the hands of the person the 14 day period was struck by Margo as a balance between the ability to know that the judgment of capacity was recent and therefore still had some relevance and the other considerations that you've mentioned could we not assume that the affirming nature of this comes from having the knowledge that the decision is there in your own hands rather than that the drugs are there on the bedside cabinet to be honest I have no answer to that question because I don't know I know what the evidence indicates that this practice appears to happen as I said it appears to have happened there's evidence from the organ that has happened there's evidence from the study in Australia that it's happened I don't believe that they looked specifically in either instance as to whether or not it was the physical location of the drugs or whether it was merely the idea of access I think in either case the 14 day period remains slightly problematic because you've still got to now make a decision within that 14 days and if even if it's merely the notion of having access to the medication so I know I can call somebody and get the pills if I need them as opposed to having the pills right there that still means I've only got to make that decision within a limited period of time and I can't go actually for the first 14 days I'm okay now on day 15 yeah it turns out now this is the line too far whatever that line is so I don't know the direct answer to your question I think my concerns about the 14 day period would probably exist irrespective of whether it's the physical location or merely the access thank you Professor Jones and Dr McKellar yeah I think with regards to the right to refuse treatment I I don't agree that right to refuse treatment are never suicidal I think you might have a suicidal refusal of treatment but we respect refusals of treatment for other reasons we respect refusals of treatment because we is a kind of right of non interference and this is to do with our sort of limits of how we bump into each other and worry about coercion so if we didn't have a right to refuse we could be coerced to be treated by doctors we can be coerced to be treated by doctors but only in very specific circumstances and limited by law and in general we don't like to have have coercion by doctors that's why we have a refusal to treat to treat in relation to this being different to suicide in other circumstance I think that might be because our archetype for suicide is youth suicide because that's a kind of let's say it's not a sexy subject but in as much as suicide gains publicity and people have campaigns about suicide it's the youth suicide that people that pulls on the heartstrings but if you look at rates of suicide it's actually older men men over 65 men over 85 very much higher rates of suicide but that's not what you see reported it's the two teenagers who die in the car that's what people care about many people who I mean I had a friend who committed suicide who was disabled wouldn't fall under the terms of this bill because wasn't well may have fallen under the terms of this bill but because it had a chronic condition long term chronic condition but he committed suicide in the same way of a of an old fashioned or traditional type people who are vulnerable do commit suicide people who are older do commit suicide this bill applies to people with chronic conditions applies to life limited progressive chronic conditions who may have years to live so it isn't just about people who are who are imminently dying so I don't think you can separate so easily the difficulties the depression the difficulty of coping in these cases from the cases that in many cases that we currently have of suicide and related to that I say and this is go back to the data stuff in England at the moment we're obviously there's another similar bill and one of the arguments that's been forward for that bill is that that bill is an answer to suicide among terminally ill people that already people who are terminally ill are committing suicide in various ways and if they had assisted dying then this would be an alternative to the horrible death at the moment they have when they hoard up pills and then they take them but the evidence I mean it's difficult to get out but the evidence is that from those when you legalize it you don't reduce the number of suicides among these category of people you still have high levels of suicide and indeed Oregon has a much higher than average rate of suicide Switzerland has a much higher rate of suicide the highest rate of suicide in western Europe is in Belgium these are not exactly parallels because of many many factors that go into these but I think that there are connections here I don't think you can you can't all together distinguish thinking about suicide and suicide prevention among vulnerable people among those with disabilities and the elderly from this kind of legislation they're not so separable Dr MacKerla and then Mr Pressin and then we've got the last series of questions and Mr Harvey made the first one to say that he is right the concept of dignity does not appear in this legislation but I used to work in the Council of Europe at drafting human rights law in biomedicine and then in Strasbourg I learnt that all good legislation is based on human rights all good human rights is based on human ethics and all good human ethics is based on the inherent concept of human dignity so all legislation is in fact based on based on human dignity even though it might not mention it and then another thing you said and I quite agree with you this is something that Professor Jones just mentioned a person who is on dialysis who's only got a few months left is entitled to switch off the machines they see it as a burden and that is something that we all accept but there's one issue that maybe hasn't been mentioned yet in this whole discussion and that is the role of suicide facilitators I mean in a policy memorandum it is mentioned that maybe this is what I understand anyway that the humanist society Scotland may take on some of this roles anyway some of the roles of suicide facilitators but I was just watching a film very recently of what was happening in Switzerland with the group exit the French section of exit exit is only for Swiss people people who live in Switzerland and these are volunteers about a dozen volunteers participating in exit as facilitators and the film was heart rendering to see the anguish eventually and the psychological tiredness that these facilitators were experiencing it is not easy facilitating a suicide and so far the humanist society Scotland do a great job in doing weddings secular weddings and also funerals but that is completely different from being a suicide facilitator I don't think anybody in this room maybe there is but I don't believe anybody in this room would like to become a suicide facilitator from a psychological perspective what you're seeing is somebody dying again and again and again and the amount of work that these Swiss suicide facilitators and this is only for the French part and as 12 of them they are overwhelmed and they are extremely tired and at the end of the film Dr Jérôme Sobel who is the president of the French version of exit says we're not doing really a task what we're doing is basically a vocation we've got to do this and I'm concerned that people who might be in favour of assisted suicide may find themselves eventually becoming suicide facilitators because they're in favour of assisted suicide and I think that would be very dangerous for them because they do not know what they're getting into to become a suicide facilitator you have to be extremely psychologically robust and that has to really be taken into account I believe Rhoda Grant Can I just make one short comment on that as well with a connection with what Dennis Robertson was asking about coercion given that you've got a facilitator you need to book a facilitator when the facilitator comes does that add an added coercion into it and that you're using that person's time and that's maybe something to reflect on but I wanted to ask about conscience clauses I know we just touched on this very briefly but is there any way that we could put in something that would allow people to opt out because in a way it's not about personal autonomy it's about the autonomy of the doctors who are looking at the request for assisted suicide because at the end of the day they have the final word on that and if you can't put in a conscience clause into the legislation you're asking people to actually maybe go against their own beliefs or indeed their training to facilitate that so what you would find was different standards being carried out by different people unless you can give people the option to either opt in or opt out of this legislation we could do that I was going to make one point but now I must make two but I will be brief I promise the first one is the question of existing decisions to refuse treatment to withdraw treatment which Mr Harvey has raised when a doctor takes somebody off dialysis with or without the patient's consent when a doctor withdraws life-saving treatment with or without the patient's consent it is not done in order to bring about the death of the patient it is done in the expectation that the patient will probably die but it's done because the treatment is unduly burdensome or it's futile intent is very important in ethics and it's ethics we've been talking about this morning now can I switch to the conscience clause because I think it's a very important point because there has to be a conscience clause at some point you can't force doctors to do this but it has one very unfortunate side effect that the majority assuming the situation north of the border is what it is south of the border only one in five doctors say at the moment they would actually participate in processes like this now the net result of that is that anyone who wants this is going to find himself or herself in the hands of a small number of referral doctors who know even less about them than the doctors with whom they are registered we have to have a conscience clause but it does have an unfortunate downside Anyone else? Professor Jones? I think we've just seen a decision at the Supreme Court in England overturning a decision in Scotland in respect to conscience clauses for abortion and that came as a surprise to some people not to others in terms of what they had thought was the protection of a conscience clause so if you do have a conscience clause then there's also something to bear in mind about how what's ostensibly in the conscience clause may be subsequently interpreted by lawyers so that's just a again on the surface of the bill and that will be influenced by human rights law and various things so it seems extraordinary that there isn't a conscience clause but also I would not overestimate the kind of protections which a conscience clause would give without thinking about a broader human rights I mean an issue at the moment in Belgium is that there is no duty to refer for example there is no duty to refer to another doctor for euthanage they would think of bringing it in but they didn't so at the moment there isn't a duty to refer but in respect to abortion in this country there is a duty to refer I think that if the if a conscience clause whatever the conscience clause had about a duty to refer I think that the interpretation of the law in England will be influenced by the general views of of conscience objection which is that you do have a duty to refer I mean as said in the opera of the Supreme Court judgment and I think therefore which is just to say that whatever is in the clause you need to have the thought of how that will be interpreted I think that the problem I have with conscience clauses is that they kind of assume that everybody has a duty to do this unless they opt out so I think that's the wrong way around it isn't clear to me that anybody in this law as it stands it doesn't clear that there is any duty to provide this I mean there's a question there's a sort of assumption that once this happens the ministers will take it on and the bodies will take it on and then it will become a right and therefore there will be a duty to provide that right but there's nothing in the law which has that now if there's no duty to provide it you don't need a conscience clause because you just say well this is not something I have a duty to provide but I think that's what's unexamined here is the more it looks like medical care the more it becomes something which you think you have right to as part of end of life care that means also that the regulators have a duty to regulate the ministers have a duty to provide to provide resources nice guidance on poisons that you use for this stuff you have to have that in place if it's part of ordinary medical care and then then you have to start opting out of it so I think that a number of submissions on this bill pointed out that there's sort of assumptions about what would happen with other people and I agree with what Professor Laurie said about that you need a whole frame we need to think about a whole framework and the likely framework is that this will be considered medical care and therefore something which you have a right to and therefore which something you have a duty to provide unless they opt out by a conscience clause and also that your ability to do that by a conscience clause will be limited by what lawyers in general have said about conscience clauses so think about that Bob Doris opened up and was wanting back in as well away away back so Bob can you cover some areas in there I've got another two questions and I need to make progress in the next 15 minutes I think it kind of likes the conscience clause but I think it's about the role of the medical professional within the process if this legislation was to be passed one of the things I was looking at is what would be a life limiting condition and it's not defined within the bill and for example type 2 diabetes in theory reduces life expectancy by up to 10 years so who would have a duty to inform people who are not coping with their type 2 diabetes that they have a treatment option which is assisted suicide and where would that sit within the relationship to the medical professional and their patient and at what point would that be done Scotland and the rest of the UK has a series of managed clinical networks by which patient pathways are quite clearly steered and I'm just wondering whether this bill could lead to medicalisation of assisted suicide whereas you go through these various managed clinical networks with a variety of conditions whether it's via your GP or GP referral the duty that's then placed on the medical professional to manage you through with your choice along the way of course to manage you through to one of those options being assisted suicide and where that sits with the fundamental role of the medical professional to protect and enhance and nurture life and health and wellbeing and that would be one of my issues with it and I'm just seeking to tease out whether anyone else would perhaps share some of those those anxieties and if the bill can be improved so I'm taking my personal views out of it the bill can be improved to give reassurances in relation to some of this Any responses? Look at what the GMC says in good medical practice in regard to treatment options if you consider it a treatment option then a doctor has a duty to inform the patient of their range of options so if it's to be kept out of that it's not just a matter of a conscience clause you also have to think about how it relates to GMC guidance and how it relates to medical care generally because as soon as it goes into the medical care category then a whole lot of other stuff will come into play including a duty to suggest a duty to show that you have a right to it if anyone else to the the guiding principle of this proposal which is the individuals autonomy I would hope that individuals would be supported to take responsibility for the sorts of decisions that they might take at the end of their life my understanding of the conscience clause is it's a reserved matter for Westminster in terms of professional regulation that's why they didn't want to try and get involved here but then arguably in terms of exploring a broader framework relating to the professional regulatory bodies such as the GMC and the BMA the Doctors Union about what they would consider to be ethically appropriate support for the autonomy of their professionals in steering this particular pathway but I would bring it back to that responsibility for the individuals at the end of the day how would that change then if it was turned as a therapeutic? once you consider it as a treatment option this is not like abortion the only reason I brought it up in relation to abortion is because of conscience clause and that's the most famous conscience clause once you consider it a part of medicine presumably a part of end of life care then all of the ways in which that's regulated in terms of a doctor has a duty to inform people of the whole range of options so it would become a duty of doctors to say one of your options is that you might want assisted dying if that's a legal option because as a medical profession if it's a medical thing even if he consciously consciously objects to doing it he has a duty to inform people that they have a right to it and so you also have a right you also may have a duty to suggest it in certain circumstances if you thought it would be beneficial plug in read the the GMC guidance on good medical practice and also in particular I would say the GMC guidance on treatment and care at the end of life and imagine that assisted dying is a treatment option and just put it through the regulation and see what the pattern would be and I think that that's that's a real possibility of this happening because even though the facilitators might not be doctors you've got three doctors involved for this thing there's medical notes, there's the decisions about conditions there's a lot of there's a lot of medicine here and I think the default is that you'd see it regulated in the same way that's interesting isn't it that the bill actually is physician assisted suicide so far as the decision making process is concerned but when it comes to the actual act it ceases to be physician assisted suicide and in fact it's very unclear what kind of assistance can be provided under the bill I mean we've got to push somebody under a train for example you know we do it talks about drugs or other means but south of the border I keep using that phrase I'm afraid but south of the border where Lord Faulkner's bill is being considered at Westminster the concept has been raised that these decisions should be taken by the High Court now at the moment as things stand with Lord Faulkner's bill they would be taken by the High Court after they've been taken by doctors which is a little bit strange it will just be a rubber stamping process but one possibility might be to consider whether as well as taking doctors out of the assistance process to take them out of the assessment process and leave doctors simply providing professional advice to somebody else making those decisions Nanette you want to end on this? Fagely touched on by Professor Jones earlier but I mean we're not really just talking doctors we were talking depending on the setting this happening nurses, pharmacists and I knew the pharmacist who we see here last week felt very very strongly that there should be a conscience clause written into legislation and not on the face of the bill as far as pharmacy was concerned because I presume and I know there are other forms of suicide other than by drug but I presume the vast majority would be have pharmacist involvement in the actual provision of the means for suicide Cedric actually give Party Harvey and Graham did you what you okay just supplementary on this question Party no? I mean I reacted a little there to the comment about pushing people under trains I'm sure the committee is capable of telling when someone's taking this subject seriously and when they're not I think I would just refer to the comments that were discussed last week in relation to a conscience clause a recognition that pretty much everybody who's discussed this issue acknowledges that a conscience clause is required for the provision of medical professionals is reserved witnesses last week seemed to be open to the argument that the conscience option is something that can be delivered through regulations doesn't have to be in primary legislation I would just ask for reactions to that the robustness of it is clear and I think just finally it's worth reflecting that the recent judgment the conscience clause in relation to abortion clarified this situation as people have understood it for a long time rather than overturning it as was suggested any response to that? nope okay, it may have been more appropriate for last week anyway I think I've got Mike, Mackenzie are you okay are you okay mate, thanks for that, Nanette again last week it was pointed out that there's a very fine line to be drawn between assistance and euthanasia and there isn't a clear definition of what the facilitator's role actually is any other people around the table of comment on that? first of all the bill actually mentions in section 18 in the title nature of assistance, no euthanasia and that's something that I picked up there is no definition of euthanasia even though it's in a title of the bill so I think that should maybe be clarified sometimes there's a very fine line and this is why it would be very important if this bill did come into effect that the facilitator is present I think there was some discussion last week or the week before that whether or not even a facilitator must always be present in article 19 it says a license facilitator is to use best endeavours to be with the person but what does this best endeavours mean normally in legislation it would be a license facilitator shall be present so there's a lot of questions there but personally I think it should be like if it does take place go down to the same road of Switzerland where the facilitator brings the drug provides the drug to the person who then takes the drug themselves and then makes sure that there's no drug left at all and then the facilitator goes away again making sure that nobody else has put the cup to the patient because if the cup is put into the into the mouth of the the drugs is put into the mouth of the patient that becomes euthanasia it's also interesting that where euthanasia and assisted suicide are both legalised like in the Netherlands it's usually euthanasia that is I think 20 times more present than assisted suicide assisted suicide with assisted suicide things can go wrong the person can take a long time to die the person can even wake up after death and then there's a whole lot of complications and that is why euthanasia is used in the Netherlands 20 times because then you can really make sure that the person is dead but for the facilitator to go away when this is taking place and just let the relatives be with I think that that would be unacceptable who knows what the relatives will do the relatives might not even be aware of the legislation so that would have to be tightened up already As this discussion has demonstrated there's incredibly fine ethical judgments that will have to be taken at all points in the framework that's laid out and we can't expect any single piece of legislation to address all the different points what I would suggest is that if there were an authority we're put in place that not only had a supervisory role but also an advisory role so when you were talking about somebody's final arrangements you could actually come with suggestions about this is what we're proposing and then seek some guidance about what was appropriate but what the bill does make very clear is the final act has to be that of the individual so it would be about the fine nuances about what counts as the final act Can I just put this to just to get clarification for some earlier offences leading up to that final act and the procedures that would be put in place you suggested there would be an offence for that for breaches and earlier did you suggest that you could create an offence for those people who were not following those procedures properly or... Much, much earlier was that if we're talking about manifest cases of undue influence where that has been established I would like to see an offence of that where somebody has clearly unduly influenced somebody in these circumstances That could be a specific criminal offence What would that look like if you thought that through? Again, I'm not a criminal lawyer so I couldn't necessarily say what type of offence it would be but that could be for discussion and exploration because what the bill does do is actually take account of acts or errors or omissions that are made in good faith so it does recognise that that will not necessarily lead to criminal liability or civil liability The corollary is if somebody is actually deliberately coerced somebody into circumstances we should make it manifestly clear that that would be subject to criminal prosecution Professor Jones Very clearly I'm not in favour of this bill but that doesn't mean to say that all criticisms of the bill are justified and I think that the is fairly clear that it intends to be an assisted suicide bill and not a euthanasia bill there will be fine distinctions and some of that will have to be in regulation in terms of there being such a distinction My concern in relation to euthanasia is not that the bill would legalise it I don't think this bill would legalise it but I think that there would be further down the line if this were accepted then I think that a number of people would want to revisit it and then through various other changes then people will say well if this then logically why not also euthanasia but I think that this is not a euthanasia bill it is an assisted suicide bill is therefore in that respect different from the low countries and like Switzerland and the states the United States that have assisted dying legislation and the final act is your own act that's and I also would commend I would commend Scotland in calling it an assisted suicide bill not an assisted dying bill which I think is seriously seriously misleading a language which many people probably if you poll the majority of people would think applied to euthanasia as well as assisted suicide but this is not the euthanasia law it's an assisted suicide law I just echo what Dr Jones has said I mean there is refreshing candor in this bill having come from looking at the building Westminster I think it's very refreshing there is something of a disconnect on this question of licensed facilitators which I've never really understood what is not clear to me when we get to section 17 it's quite clear about the decision making process but what is not clear is how drugs or other substances get to the licensed facilitator and then to the person concerned we go first of all we have section 18 which seems to be saying there must be no euthanasia I mean I'm a little puzzled by subsection 1 which says nothing in this act authorises anyone to do anything that itself causes another person's death well I would have thought supplying somebody with lethal drugs to take out of that but never mind we'll leave that on one side if you look at section 19 the licensed facilitators wrote is to provide before during and after the act of suicide such practical assistance then comfort and reassurance and then to be with the person when any drug or other substance or means dispense to otherwise supply for the suicide is taken or used I'm not quite clear what is the machinery for moving from the decision to supplying the substance to be prescribed anywhere in the bill I'm going to call it to an end at this point I think we've had a good long session we appreciate your attendance here your participation the views that we've heard this morning I think I've been interested in some ways challenging to the committee we appreciate all the time and the valuable time that you've given us and I'm going to draw on to your question to a close at this point thank you all very much for being here