This morning, we welcome to our fourth meeting in 2015 of the Health and Sport Committee. I would ask everyone at this point, as I normally do, to switch off mobile phones as they often can interfere with the sound system. I would ask panel members and indeed people on the public gallery to note that you will see a rydyn ni yn cefnogi'r cymysgau lleoliadol wedi gaelm. Gwch yn meddwlion ei gweld ei fod ystod o'r ffasio a chi'n cael ei gweithio. Roedd i ni'n diolch o'r partych Gwch yn pleiddiad o'r Gwch yn bwysig ar yn ei gweithio, rydyn ni'n brosibau rydyn ni'n gweithio i'r partych. Roedd i ni'n brosibau i'r Gwch yn bwysig ar i ni'n brosibau i'r Gwch yn bwysig ar rydyn ni'n bwysig ar ysgol. Item 5 is a consideration of an approach paper to the Commonwealth Games legacy. We normally take those papers in private. Can I have the committee's agreement to do so? Thank you very much. We now move to agenda item number 2, which is the appointment of a European Union reporter. I have had an indication that Richard Lyle is happy to take on this role. Is the committee agreed that Richard Lyle shall be the committee's EU reporter? Thank you very much for that. We now move to agenda item number 3 and continue our scrutiny of the Assisted Suicide Scotland Bill. We have two roundtables sessions this morning. Can I welcome all our roundtable members to the committee? As usual, with a roundtable, I will invite everyone to introduce themselves. First of all, I will introduce Dr Mary Neil, who is the committee's adviser. My name is Duncan McNeill, MSP for Grinnellton Inverclyde, convener of the committee, Bob Doris, MSP for Glasgow and I'm deputy convener of the committee. Hi, I'm Jennifer Wacken, I'm from the Humanist Society Scotland, and I'm actually one of Duncan's constituents. Good morning, I'm Richard Lyle, MSP's central region. Good morning, I'm Gordon Macdonald from Care for Scotland. I'm Richard Simpson, MSP Mid Scotland in five. Dr Peter Saunders from the Cannot-Killing Alliance of Organisations. Good morning, Colin Keir, MSP for Edinburgh Western. Rhoda Grant, Highlands and Islands MSP. Mike McKenzie, MSP Highlands and Islands region. I'm Dr Bob Scott, my life, my death, my choice. Good morning, I'm Dennis Robertson, MSP for Aberdeenshire West. Sheila Duffy, I'm a retired journalist and a member of Friends at the End. Noret Mill, MSP for North East Scotland. Patrick Harvie, member in charge of the bill. Thank you, welcome again to you all. I'll move directly to our first question from Dr Richard Simpson. This is probably one of the most contentious bills that we've had in front of the Parliament. The third time, Patrick, we've had a bill of this sort. Yes, anyway, it is something that has been discussed on a number of occasions. The fundamental dichotomy that we're faced with is a desire that the public are expressing quite strongly in terms of autonomy in relation to this bill, on the one hand, and on the other hand, protection of vulnerable individuals. Although the public may be strongly in favour, it's obviously Parliament's strong duty to ensure that those who are vulnerable are not going to be subjected to undue pressure as a result of this bill. My opening question to the panel is how do they see us in this bill ensuring the potential for autonomy in what it's about, is that all that it's about, and on the one hand and on the other hand, do you feel that it does protect those who are vulnerable adequately? I think that the first point that I would make is that public opinion polls are often quite fluid on this issue, particularly when you present counter-arguments and care conducted a UK-wide opinion poll last year, specifically related to the Falkner Bill, in which we presented five of the counter-arguments, and the level of support fell from, I think it was 73 per cent to 43 per cent, and it was equal with those who opposed the bill. So the point really is that in terms of judging public opinion, it's quite difficult to judge public opinion on the basis of a simple question. You have to give people the full arguments and then let them think about it and make up their mind on that basis. I take the point that Gordon is making, that in all surveys conducted recently, the vast majority and generally around two thirds of public opinion is in favour of a change in the law as long as there are safeguards and as long as the person has made that decision themselves. Gordon and I have had this argument before, ordinary people, once they think it through and it's not a simple thing, this is a very contentious bill, that's why it makes it so important that we have to consider it very seriously. I talk to a lot of ordinary people, I come from a very ordinary background, I talk to taxi drivers and people on check-out and things like that, it's not just those and such as those, it's not just Terry Pratchett and Jeremy Paxman and Richard and Judy, it's ordinary people when you actually talk to them and say, yes, I saw my mother, my brother and my grand suffering in this way, I think there should be a change in the law and disabled people and religious groups as well, when they're asked, as I say, around about two thirds want a change in the law and I think it's, you know, our MSP's responsibility to bring that about. About 20 years going right back to the House of Lords consultation in 1992 and the figures that have been quoted in favour of a change in the law on this issue have always been around the 75% to 80% level. And I think the point that Gordon is making is that this is largely uninformed public opinion, the care poll was striking because support for Falconer's Bill, which was not dissimilar to Patrick Harvey's, dropped from 73% to 43% when the five major arguments against it were heard and those arguments were, first of all, that every disability rights group in Britain is opposed, disability rights UK, the UK DPC, Scope, not dead yet, that every medical group was opposed, virtually the British Medical Association, most of the Royal Colleges, the one or two that were neutral, that when you change the law you put pressure upon vulnerable people to end their lives for fear of being a burden, either a care burden, financial or emotional burden, and then also that the experience of other jurisdictions shows both an incremental increase in numbers and a widening of the scope of categories of people to be included, so it's uncommitted opinion. I think it's also, at least it's uninformed opinion, it's also uncommitted opinion in the sense that people will often give a reflex response to what is often very high media profile, celebrity driven often, hard cases on the media, and it's natural that they respond in the way that they do, but actually it's not a voting issue for most people, and I think it's also unconvincing in the sense that, for example, most people support the return of the death penalty, but we don't reintroduce it because of the risk of innocent people being damaged, that's this collateral damage issue, and that's why really complex and difficult issues like this are not decided by opinion polls or referenda, but that they must be decided by elected representatives who've had the opportunity to wail the evidence very carefully. Dr Scott. Thanks very much, chair. There's a number of points that Dr Saunders raised there that I might come back to later, but to refer to Dr Simpson's original question, there is a balance to be struck between autonomy of the individual and protection of society, at large protection of the vulnerable, and we're in the fortunate position of being able to look to evidence from elsewhere. There is no evidence, for example, in Oregon, that theoretically vulnerable groups in society, the very old, the less well off, the disabled are more likely to resort to assisted dying than would be suggested by their proportion in society, so we believe that there is huge public support for this, that not only do voters support it, and clearly the poll showed 69% of them do with 78% declaring that it's supportant or very important that this bill is passed. The concepts underlying the bill, though, which I think Dr Simpson referred to in our view, are three. There is freedom of choice autonomy for the individual, but there's also compassion and tolerance. We believe there's substantial moral equivalence in this debate. It's quite proper to arrive at a different conclusion based on the same evidence according to one's beliefs, but we don't support the bill because a majority of the population are in agreement with its aims, although they do, but because we believe that it's the right thing to do. Can I just say it on the disabled point? Certainly the spokesmen for lots of different disabled groups are very vociferous and are very critical of any change in the law, but they actually look at the facts. Lord Law of Dallston, who is himself disabled, speaking certainly in support of Lord Faulkner's bill, referred to a UGAF opinion poll, which was conducted amongst registered disabled people. 79% of those registered disabled people supported a change in the law to allow the terminally ill, who were competent adults, to control the time and manner of their death if they consider their suffering unbearable. It's not just Lord Dawson and Baroness Brinton, who again is in a wheelchair, supported Faulkner's bill in the House of Lords. She is a Christian.  I think it's very easy to say, well, all doctors are against this, all disabled groups are against it. The actual facts when you look at, when disabled people are asked and polled is quite different. I note your interest, Dennis. I'm going to encourage some discussion and Dr MacDonald. On the issue of Oregon, the last time this bill was, or this issue was, considered by the part of the end of life assistance bill committee, which considered it, took evidence from Linda Ganzini from Oregon. Linda Ganzini conducted a study that showed that 26% of people who were getting access to commit suicide in Oregon were depressed. I think that there are concerns about Oregon, not just in relation to people who are depressed, but also the lack of safeguards, the lack of reporting mechanisms. There are quite a lot of concerns about the way the system operates in Oregon, but nevertheless this bill, which is before us today, is not like the Oregon bill. In some ways it sits between Oregon and the Swiss experience so that the situation in Oregon can't be read across automatically into the Scottish context. Richard, do you want to come back? Yes. One of the concerns I have about this particular bill is the breadth and scope of those who are eligible. It is a life-limiting condition. All our lives are limited in some way, but if we look at life-limiting, that is a pretty broad definition. It is not, as the Faulkner Bill says, equally difficult to define but terminal illness within six months. We are dealing with anyone who feels that their life is limited in some way, or who a doctor says that their life is limited. The example that I gave, which is an extreme example, is that if you have type 2 diabetes, you can expect to live 20 years less than the average life expectancy. Therefore, it is life-limiting as a condition. My next question is, if we proceed with this bill, what measures should be taken to improve the situation so that it is focused on those for whom this may be an appropriate measure? I agree, Dr Simpson. I think that there is room for improvement in the wording around this. The policy memorandum and accompanying notes to the bill makes the intention of the legislation clear, but the wording leaves me and many others in some doubt as to specifically to whom it is referring. Clearly, the intention was to say that everybody with diabetes was eligible to immediately proceed, but yes, there is room for improvement in the wording there, and we would be happy to contribute to that. Anyone else? Dr Saunders and Dr McDonnell? Yes. We are deeply concerned about the very wide scope of this bill because we are not just talking about people with terminal illnesses, but the fact is that most progressive conditions will have a life-shortening effect. Not just cancer, coronary heart disease, chronic obstructive airways disease, neurological conditions like multiple sclerosis, diabetes, high blood pressure, obesity, dementia and many mental illnesses and many also acquired and congenital disabilities will all fall within the remit of this bill. What we need to grasp is that at the end of the day, it is not whether the person qualifies under the auspices, but if the person feels they qualify or if a doctor is willing to put a signature to a paper to say that they qualify. If we look at the Oregon experience, in Oregon there is a six-month life expectancy, but in fact people have lived for several years after being given authority under the Oregon to build or kill themselves. In 2013, according to the statistics, 16.9% of those killing themselves did not have these terminal illnesses. If you read the footnotes of the annual report, they included deaths due to benign and uncertain neoplasms, other respiratory diseases, diseases of the nervous system, Parkinson's, musculoskeletal and connective tissue diseases, viral hepatitis, diabetes, cerebrovascular disease, alcoholic liver disease. Even in Oregon, what happens when you change your law is that people go up to the new law, they go beyond the law, doctors will be prepared to sign it and even in Oregon we are seeing that the scope goes far beyond what is there. With the incredibly broad scope that we have in the Harvey Bill which includes even the ageing process or arguably even life itself as a life terminating condition, you are encouraging a free for all. When you combine that with the woeful lack of accountability and the savings clause, clause 24, which seems to give the benefit of the doubt to anyone who is involved even for a few weeks, a careless or omissions and so on, you have a recipe for quite concerning incremental extension and mission creep. Dr MacDonald, I will let you answer that. I will let you in after Dr MacDonald. I think that there is an issue of principle which Richard Simpson has touched on in his first question, which the committee needs to consider. As a society, do we want to move towards sending a message out that some people's lives are not worth living because of the quality of life that they perceive themselves to have? Or do we say, well, no, we have a responsibility to protect those who are in a vulnerable position, who might feel a burden on family, on friends, on the NHS, who might for whatever or other reason feel under pressure to commit suicide. So that is the fundamental issue of principle about the autonomy of the few versus protecting the needs and the interests of the many. I think that in terms of this particular bill, it is not just today, but in previous weeks you have heard evidence about concerns about the wording in this bill. The Justice Committee has come up with many concerns about the drafting of this bill. My feeling is that this bill needs to be put in the bin.  Of Oregon and the inference that Peter Saunders made about this, well, infaring a slippery slope, once you do allow a certain category of people to have an assisted suicide, then it broadens, then it becomes wider, then the slippery slope. Well, there's no evidence, of course, of that in Oregon. It's been in a law for 17 years. It hasn't been amended. It hasn't been broadened. It hasn't been changed in any way. Can I just go back, though, to the arguments, which I know are sincerely held by Gordon and Peter, that the status quo is much better than a leap into the unknown? Well, actually, the status quo is not working. The law is not working now, and it doesn't need me to tell you that, or Baroness Warnock in the House of Lords. The law does not work at the moment. It doesn't protect anybody. It's a fudge. And if you look at Keir Starmer's had to make various pronouncements to try and clarify the Debbie Purdy case and things like that, nobody accepts that the status quo protects anyone. It doesn't protect anyone. And those who wish to ignore the law as they have always done down the ages can go to Switzerland, control the internet for the drugs to kill themselves. It's not protecting these people either. So the law, the status quo, frankly, at the risk of sounding insulting, and I don't mean to do this, is the coward's way out. This bill is serious. This has to be considered because of what Bob said, not because of what Sheila Duffy says or what Patrick Harvey says or what Margaret McDonald says, but because it's the right thing to do to support this. In a civilised society, the way that we treat our elderly, the way that we treat our ill is very important, and the way that we treat our disabled. I will defend Gordon's right to the end to have maximum palliative care, maximum tubes, drips, oxygen masks, if that's what he wants for himself, his family, his members. I am arguing that we need choice. I don't want that for me, and in a civilised society where we regard and respect autonomy, I want my choice. I defend Gordon's choice. Gordon's choice is quite right. Of course we must have more palliative care, but we must also, for those who are at the end of their life, suffering intolerably, offer them this possible assisted suicide. I'll bring you in, Dr Sonders. I'm going to bring Jennifer Buckingham because she hasn't spoken, but you'll get all the opportunity neither than you want to. Jennifer. We heard earlier that the general public aren't informed about the bill and how they feel about assisted dying because of celebrities and the media, and it's a knee-jerk reaction. It's not a knee-jerk reaction. This is the people who are, we want this bill to pass through, and that's four out of five people in this country have immediate personal experience of family members, friends who have suffered in such a great deal and such a great way that they didn't want them to go through that again. I'm actually a nurse and I've worked in hospitals in the community and I've worked with people who have dreaded the time when living for them becomes unbearable. I have sat on people's beds and held their hands and they have asked me every single day for weeks, please, can you please help me to go? And you can't. You've just got to sit by their bed and families who've come up afterwards and said, I can't believe the torture that my relative has gone through. That is the experience that people have in this country. That is why this bill has to pass. I want to comment first on the current law, because we often hear that the law is a fudge or isn't working, but I think the law that we have at the moment in the whole of the UK which gives a blanket prohibition on all assisted suicide in euthanasia is clear and it's right and it is working. The evidence that it's working is firstly that we see a very small number of cases going to places like Dignitas, about 15 to 20 per year from the whole of the UK. You put that up against 500,000 deaths in the whole of the UK each year. It's an absolutely minuscule percentage. The other evidence is that we see very few prosecutions and the law is working because, on the one hand, the penalties that it holds in reserve provide a very powerful disincentive to exploitation and abuse and make people think twice. At the same time, it gives discretion both to prosecutors and to judges to be able to temper justice with mercy in hard cases, if you like, to let the punishment fit the crime. It has, on the one hand, a stern face to deter abuse. On the other hand, it has a kind heart to deal compassionately with difficult cases. The best kind of laws, the easiest laws to defend, are those which are very clear. For example, if you're defending a country, then it's far easier to defend the borders if they fall alongside natural geographical features like mountain ranges or rivers. In the same way, the laws that are most easily defended are those that have blanket prohibitions but give discretion to prosecutors and judges. That's the situation that we have at the moment in the UK. Once we change the law and create exceptions, then we will find that people will push the boundaries. It's not about slippery slope. That implies a passive process. It's about incremental extension or mission creep. It's about individuals pushing the boundaries of a new law that allows these exceptions. The problem is that the two major arguments used to advance this legislation, which are autonomy and beneficence, the problem is that those two arguments of autonomy and beneficence apply not just to physician-assisted suicide or assisted suicide but also to euthanasia. They apply equally. It's lethal ingestion or lethal injection. They imply equally. They also apply to people who fall outside the already broad range of categories to be included within this bill because there are people who do not have terminal or life shortening conditions who actually would like to die for whatever reason. Once you create an exception for any people at all, once you create a right for some people, you're immediately setting yourself up for new hard cases to come along that challenge the boundaries of that under a quality legislation. As we've seen in places like the Netherlands and Belgium, you get a gradual weakening and broadening of the categories of people. The best law to have is one that is clear, gives a blanket prohibition but gives discretion to prosecutors and judges as evidenced by the small numbers going to Switzerland and the very small number of prosecutions we have here. Colin Kears asked for a question. I'm just saying this for Dennis. He asked for a question. Supplementary on Dr Swindor's response. Thanks very much, convener. I listened very carefully to what's just been said here and I do understand the categories of people who are being discussed. However, the one group of people who obviously haven't really taken into view here are the ones who actually just go ahead and commit suicide in terms of numbers.  Usually the people who can afford to go to Dignitas is really what you're saying. Now there's got to be a group there who say, I'm not taking any more and take their own life and do we have numbers for these people who do such a thing because I think we need to know those numbers alongside the Dignitas numbers to work out exactly what is happening because an awful lot of people will do that. Do you have a response on that? Yes, please. We do know the numbers because they've been calculated. We know 15 to 20 per year go from the whole UK to Dignitas. We know that with an Oregon type law in the whole of the UK we'd have about 1,300 deaths a year. With a Dutch type law, which allows both euthanasia and assisted suicide, we would have 13,000 deaths per year in Britain. So the current law is certainly restricting the number of cases. The number of suicides is much less than that and I think what we really need to grasp here is that this is not about the condition of the person. It's about the person with the condition. So you can have two people take the two rugby players, Matt Hampson and Daniel James. Daniel James paralyses, finds his life in Tollable, goes to Dignitas. Matt Hampson, with an even worse disability on a ventilator, is an inspirational speaker going around schools who did everything he could to change Daniel's position. So we've got to understand that this is very much about the person with the condition and their attitude. It's not about unbearable suffering or pain. In Oregon just 23 per cent of people cite pain or even fear about future pain as the reason for ending their lives. It's well, well down the list of categories. Number one is autonomy, 93 per cent. Number two is loss of enjoyment of life, 89 per cent. Number three is loss of dignity, 73 per cent. In Washington, the neighbouring state, 61 per cent end their lives because of fear of being a burden. The figure in Oregon is 49 per cent. Now, these are not physical symptoms. These are existential symptoms. These are symptoms about loss of meaning and purpose. And I think to take the step to allow people to have, to ingest lethal drugs for what are in a sense existential symptoms, most of which could be improved by good palliative care or much better support, would really be the ultimate abandonment. Dr Scott. I think I might be able to help Mr Keir with some information closer to home. Figures extrapolated from research carried out in England by Demos through the coroner system would indicate that around 50 people a year in Scotland with terminal conditions choose to end their own lives each year at present. That's one person a week. Now, we have anecdotal information pointing towards many of these deaths being violent in nature. I'm happy to provide the committee with the source of that information, should you wish. Peter Saunders made about the two rugby players, which is very relevant, is that it actually underpins what we are arguing for, and that is for choice. Some people will choose to carry on with perhaps multiple disabilities, perhaps able to suffer more pain than others. Some will just reject that choice and they don't want it. Daniel James tried to kill himself several times before his parents agreed to go with him to dignitas. I have grown up children who are roughly his age. I can't imagine how heartbreaking that was to support their son and go to Switzerland and come back and find on the doorstep two policemen going to question you about your motives. Is that the kind of civilised Scotland we want? Is that the kind of civilised society we want? We must protect our vulnerable, our elderly and our weak, but we must also give them choice over their own suffering, over their own future and at the end of life as well. Dr McDonald. What this boils down to is the issue of autonomy versus the issue of protecting the vulnerable. We had a report in the press this week about a couple of cousins from Trun who went to Switzerland for what reason not, because as far as the press reports are concerned they were terminally ill or they had some sort of chronic illness, but essentially because they were feared being lonely. They feared being split up and sent to different nursing homes. The question that we fundamentally have to ask is are we content to move to a society where choice is the absolute public good? Because if that is the case then you don't put a restriction on it. Sheila McLean has said in previous debates that I have heard her speaking out that she has argued for autonomy and for extending it to other groups including Euthanasia because her founding principle is autonomy. If that is your founding principle then you should not be saying well it should be restricted to the terminally ill, it should be restricted to people with a chronic condition. Why would it be wrong for people who are lonely to go and commit suicide or to be given assistance to commit suicide which is what we are talking about? It's about the state through the medical profession or through other professions providing assistance to people to commit suicide. That runs contrary to everything that the Scottish Government and other public agencies' suicide prevention policies are about, which is saying don't give up, life is worth living, it can be improved. You're sending out mixed messages and what you would be doing is saying well actually your life isn't worth living and we are going to endorse that view and encourage you to go and commit suicide rather than say to you no hold on a minute that's not the case. You are valuable, you have intrinsic worth and there are people who love you. It was interesting that the cousin, the nephew in that case according to the press reports said that he would have tried to discourage them from doing so if he had known about it but he didn't know about it until after the event happened. That highlights where this legislation might go. Peter talked about it being extended. Margo McDonald herself said that she expected that it would be extended to include other categories of people later on. We are really crossing the rubicon with this if we introduce it. I would urge the committee to think very carefully and not to take this step. Dr Scott. We have met representatives of choose life organisation and we fully support the Scottish Government's suicide prevention strategy. Our natural response probably everybody around this table and beyond to the very word suicide is to recoil for we're conditioned to regard it as a mistake and a tragedy and rightly so. When suicide comes about as a consequence of mental illness or overwhelming emotional turmoil, how could that not be? It's the few remaining cases which challenge our understanding.  I think that there is a need for us to recognise that such action can be appropriate even if, and here comes the tricky bit, even if that conclusion runs contrary to our personal values. Showing tolerance, another concept which I think lies at the heart of this bill, showing tolerance towards and measured conduct of others of which we do not necessarily approve is surely the hallmark of a truly civilised society. We all cherish autonomy and we're all thankful that we live in a democratic society which respects autonomy. But we also recognise that there are limits to autonomy and that we're not entitled to exercise freedoms which undermine or endanger the reasonable freedoms of others. That's why we have laws. That's why you're here to craft those laws because every single law on the statute books stops some person doing what they desperately might want to do. But the problem is that once you change the law to allow assisted suicide in any circumstances at all, you inevitably place pressure on vulnerable people to end their lives out of fear of being emotional or financial or care burden upon others and you place pressure on vulnerable relatives as well and those particularly affected are the elderly, the sick, the depressed, those with disabilities. Particularly at a time of economic recession when many families are suffering and when welfare cuts are being made and you'll hear from Inclusion Scotland later today about the effect on disabled people of having welfare withdrawn and the pressure that that raises. These pressures can be very intense indeed. Now, when we look at the Oregon figures, remembering that Oregon is a very wealthy northwest state, we find that in Oregon, 6% of people cite the financial cost of treatment as a reason for having assisted suicide. In Washington, nearby Washington, it's 13% cite the financial cost of treatment. In Oregon a few years ago, there were two patients, Barbara Wagner and Randy Stroop, both of whom applied to the Oregon Health Department for chemotherapy treatment for their cancers. Both of them received letters saying, we're sorry, but we can't fund your chemotherapy. However, we will fund your assisted suicide. Now, they thought that was quite interesting because neither of them had asked for that. But the point is that once you legalize assisted suicide, then you make assisted suicide a treatment option for this range of conditions. That means that a doctor, a GP, is obliged to present it as a treatment option. But far more importantly than that, as a treatment option it gets costed. And when you put the cost of chemotherapy or radiotherapy, perhaps tens of thousands of pounds cost against the cost of palliative care or hospice care, £3,000 or £4,000 a week, against the cost of a glass full of barbiturate, five quid, then it is inevitable that there will be pressure to take the cheapest treatment option. And do we want to put that choice of costed treatment options up against families who are struggling and perhaps suffering welfare cuts, up against health administrators who are allocating and paying for different forms of treatment up against doctors? That's not somewhere that we want to go. And the problem is that the cost of this will be a major driver, I believe, to steer people towards suicide who, had they had adequate support or care, would not have chosen that option. In other words, it's not a real choice for them. They're going that way only because they feel that there's another choice open to them. Shilodroffi. Treatment option. I just don't see that happening in Oregon. The palliative care and hospice movement in Oregon would put us in this country to shame because it's amongst the best in the United States. I do not see a disconnect between palliative care and assisted suicide. It's almost as if when you open up this whole discussion about and death is the final taboo.   They will, oh, I'm not going to do that right here. No, no. It is the final taboo. And if nothing else, if this bill does nothing else, I honestly believe it will open up the discussion about death and end of life choices and what mum or dad or husband or wife or son or daughter does or doesn't want. But also we'll say, well, why should this person offer assisted suicide in any country of the world, Netherlands, the palliative care system is much, much better than what we have here. So I don't see it as an either or an or. I think that it goes in hand in hand and that palliative care and hospice care will improve if we pass this bill. It's not, you know, given the evidence we've had, you know, I suppose, the treatment option is that part of treatment. And the end of life palliative care are those who are involved in that, who do encourage talk about death and dying and it's their job. They're almost completely opposed to this bill. You know, the hospice movement and others are, the evidence is very heavily against this bill. You know, why is it, then, if you say that they're complementary, that that suite of choices, that the palliative care and the end of life people who are involved in that are almost, the evidence is heavily, heavily against the bill. That's just... Very vociferous people who work in the hospice movement and the palliative care movement who are against this.  I mean, what is the reality? I was actually fortunate enough to be asked to do the guest lecture at Ardgaun hospice just in November in Greenock. And the topic was humanist pastors within the hospice situation, but we did actually come round to talking about the assisted suicide bill because people knew I was involved in it. To say that the majority of people who worked in the hospice were against this bill actually in Greenock is wrong. We'd had a huge discussion about palliative care and how brilliant it is in this country. There are a tiny number of people that it's not for. And for that tiny number of people these people are suffering. And a lot of the time, because I was a nurse but I'm now a humanist celebrant, a lot of the time I'm conducting these people's funerals. I've conducted the funerals of very high profile cases in the past year of people who have taken their own lives together. And the family afterwards I've had to answer to the police, answer to the prosecutor's fiscal and it's made a bad situation much much worse for the people who were suffering initially. So to say that everyone involved in the hospice service is against this bill isn't quite true. I don't think not for me to follow in here in public but I would be very careful of suggesting that I'm giving hospices for this bill. I think because after representation and clearly not I've been alone at the hospices and everything else but I was referring to the evidence that the committee has had and lots of that evidence from that section is heavily against the bill. I'm not making a point on my own point or my personal point, I'm just reflecting on the evidence that we have had. Doctor MacDonald I think in terms of palliative care the UK is world leading on palliative care. I don't know the situation Oregon may very well have good palliative care as well and I know that certainly the assisted suicides are not happening in the hospices in Oregon but we are world leading so the UK without assisted suicide law has developed very good palliative care. That doesn't mean that it can't be improved and you heard last week particularly in the general hospitals in the community there is a need for improved palliative care improved training etc but I don't think that we should say that just because a place has good palliative care that's an argument for legalising assisted suicide at all. In terms of the hospice movement most people in the hospices are opposed to this as you've commented on it and the reason is because they can see what can be done with good palliative care and often it's people's fear of the unknown because they've not experienced good palliative care that pushes them to articulate a view that they wish that assisted suicide could be legalised. If you don't mind because I've got MSPs that are getting a bit edgy to get in now it may take us on to your other questions I'm going to try and take some of those in I should also give notice that we do intend as a committee to look at palliative care because it's all very well saying that it's great and it's good and whatever it hasn't been reviewed since 2008 and you know there are issues there that we would wish to examine as a committee but Dennis Robinson asked to get in and ask a question a long time ago dinner Thank you probably I think the question I was going to ask to conveners has been covered perhaps on the first instance just the discussion we've just had Dr Scott said this morning in terms of the palliative care and the bill was as a spurious argument so maybe you would like to sort of explain what it means by the spurious aspect of the argument from his interview this morning but the question that I think I would really like to sort of consider convener is the human right aspect we have a right to life that's enshrined in law do we have a right to death do we have a right and how we die because if we do and if we sort of move forward with this bill does it then open up the door to people who perhaps believe that they want to die and I've had many experiences of people saying I would rather be dead than have this condition or I would rather be dead than and they don't really mean that but I'm just wondering if the bill in itself opens that door are these people who make these sort of comments initially because the change of circumstances would they maybe opt for this the assisted suicide but perhaps just convener maybe Mr Scott would want to answer the spurious aspect first and then open it up to the human rights your suggestion some of the evidence that we received that suicide is a human right I think but some of the Doctor Scott do you wish to respond thank you welcome that opportunity and I speak as a retired general practitioner who during his working life had a special interest in end-of-life care in the community of my patients I think the spurious nature I was trying to clarify is that I see no conflict between what is being proposed in the bill and appropriate palliative care I think they are capable of coexisting comfortably and I acknowledge that that is quite a big leap in understanding and recognition and I put my hand up self and say that my position has changed I didn't previously believe what I now believed to be the case I was against this but the weight of evidence persuaded me that it was appropriate for this to go ahead now that is not an unplacable position I may in the future change my view back again if the evidence persuaded me but at present it doesn't this is an exceptional provision that's being proposed not a routine part of medical care exceptional response to exceptional circumstances anyone else sorry Dr Sonner just to come back to this issue of palliative care we know that in all surveys between two thirds and three quarters of doctors are opposed to a change in the law and as I said the BMA and most of the royal colleges are opposed but what's always been striking is that when we look at palliative medicine specialists it's proportionately high the time of the Jofi Bill in 2006 it was 95% of palliative medicine specialists who were opposed and I think we've got to ask ourselves why that is why is it that these people who spend all of their time with the kind of folk who will be regard as being within the remit of this bill why are they most opposed and I think there are two main reasons I think the first is that people dealing with the dying understand the vulnerability of dying and disabled people in a way that other doctors don't because they're spending a lot of time with them and they understand the family dynamics the subtle pressures that families can put on people they see their vulnerability they see them often making choices because they feel they have no other choice and they recognise the need for legal protection for people but the other reason is that palliative medicine specialists know exactly what to do with all kinds of different symptoms whether it's physical symptoms like pain or nausea whether it's feelings of social exclusion whether it's spiritual problems of lack of meaning and purpose they're trained specifically to deal with these sorts of things and it tends to be a lot of the push for the change in the law is coming from the worried well rather than from really sick people a percentage of people who are dying who want euthanasia or assisted suicide is much lower than the general population and that's because when people see the care that they can have and experience good care they change their minds you'll recognise my accent's not Scottish or English I come from New Zealand and one of my colleagues in New Zealand looked after the president of the voluntary euthanasia society there in his final days with a terrible cancer that was very difficult to control the symptoms of and this man never ever requested it right up until the very end that anyone would prompt him because he saw the care that he could give in fact he was quite anxious that because of whom he was someone might do the deed for him Rob George who one of the leaders of the association for palliative medicine works for our speaks on behalf of our movement says that in a lifetime of managing 20,000 cases of dying people he could count on the fingers of his two hands the number who had persistent ongoing requests to in their life or to die in other words the overwhelming vast majority once they experienced what good care was wanted assisted living not assisted dying they wanted care until they died not an assisted death and the question that we are left with is do we change the law for this very very small group of desperate and determined people do we change the law to allow them to kill themselves and the argument is a balance of harms no we don't because it would simultaneously remove legal protection from a much larger number of vulnerable people Sheila Diffie once they come in as well the innocent in of course I'll get back to you just on the question of most doctors and most medical healthcare professionals are against this it is very difficult if you're a practicing doctor to come out and say I'm in favour of this because you do get labelled a doctor death the actual statistics though I think prove that there are there are lots of doctors retired doctors Charles Warlow Graham Cato I mean I got a list a mile long that I can tell you I'm old enough sadly to remember when doctors were bitterly opposed to the introduction of the national health service bitterly opposed to it we will go to hell in a hand car free care free healthcare for everyone are you mad who today will not defend albeit with all its faults our wonderful national health service you know doctors this is too important frankly to leave to doctors and I actually don't believe that most doctors are opposed to it many of them have to sit on the fence there's no doubt some are of course some are opposed to it and I respect their views as well but you know this is far too important to leave to doctors to decide to gosh Bob I'm sure you find today it's more you've said to me when we've been talking about this it is more difficult today to get a good death than it was when you trained as a young doctor because doctors have to look over their shoulder in case people climb on them Doctor Scott I think that's your cue thank you chair thank you Sheila I would maybe broaden it out just a touch and refer the committee to a 2011 survey and I apologise for the statistics the same information is used by both sides in this debate but for what that's worth here goes there was a thousand GPs and some surveyed asking them what they would want to happen to them, were they to find themselves in a position where they were suffering intolerably and it fell neatly into three compartments one third said that they certainly would wish to have the option of assisted dying a third said no thank you and a third said that they didn't know what they would do so to present the medical profession including palliative care specialists uniformly against this is a misrepresentation of the reality and if I fudged that on a personal basis my apologies Doctor MacDonald and then I'll get back to you that's right you used the term intolerable suffering it's you know not neutral let me put it that way and it's also not well defined of course I wanted though to comment on the issue about human rights you're right there is a right to life in ECHR and that right to life is a foundation really of human rights and it didn't come from nowhere of course the ECHR came out of a context in which that right to life had been grossly and systematically abused there is no right to death and the European Court of Human Rights has always refused cases that have been brought to it on that basis that control death and the circumstances of death death is an inevitability in some ways it's not something that people would wish to write to or most people would wish to write to people would wish to avoid it and we have to be aware of the fact that you know where people seek to control the timing and circumstances of death that the fallout of that right to life and that is why we would say that the right to life of the many has to be given precedence over the demands of some people to control the timing and the circumstances of their death and indeed the evidence from Oregon shows that in many cases the people even once they are given the lethal dose of drugs do not take the drugs that is uncontested and so clearly in that situation where they have the drugs in the cupboard they still don't want in many cases to go ahead with the act of suicide Dennis I think we've just explored we've got this right to live but should we not rebalance that and give people the right to how they wish to die and it's not because maybe they're having terrible pain or whatever they just feel that their choice is that they wish to end their life for whatever reason and I'm just thinking should we look at that as a basic human right as we did as a basic human right to life If you move towards that position in law then the problem is that you undermine other people's right to life and although people might express that desire you've got to look at everything else that's going on in their life are they clinically depressed are they feeling that they're a burden on their family and their friends is the inheritance being used up by care home fees you've got to look at what the other circumstances are and say is this a considered informed and reasonable position to take and more to the point is it reasonable for the state to encourage people down that line and if the state does encourage people down that line it will be the consequence in terms of the culture in medicine, the culture in our society the evidence from the Netherlands I know that this bill is not exactly the same as the Dutch legislation but the evidence from the Netherlands is that there has been a shift in the culture in the medical culture so you have a situation where 12.5 per cent of deaths are through terminal sedation they don't feature in the euthanasia statistics which have gone up every year in the Netherlands we now see disabled infants being euthanised in the Netherlands the culture has changed and that I suppose is our concern and Oregon is a different scenario but at the end of the day if you change the medical and wider culture then the pressure will be placed on people Dr Scott Very brief point I hesitate to strain to the field of the law well beyond my expertise to say that a majority of the Supreme Court our Supreme Court has recently indicated that the current blanket ban on assisted suicide either is incompatible with article 8 of the European Convention on Human Rights or may well be so I leave that with the committee and other experts to clarify The Supreme Court said that Parliament should decide the matter that's what they said and obviously this Parliament has decided the matter is considering it again now That's where we are today We are indeed Jennifer Buckin I would like to say to Dennis I think everyone has a basic human right to a good and a peaceful death and as someone who works at the Chalkface as we are for a lot of people that doesn't happen I do the funerals of people who have had a very violent death they have taken their own lives they have been alone and they have committed suicide and they have been alone and they have had a very traumatic death no one should have to do that Sheila Duffey and then I am going to take Bob Doris and move on Gordon made a very good point talking about the twins in Trun that if their nephew had known he would have tried to stop them and this I think puts a lie to the misunderstanding that if you are wealthy and coming towards the end of your life your children, your nieces, your nephews will put pressure on you to go I have not seen this at all about one of our members who went to Dignitas Nan who had a very large house in Chelsea was very wealthy she specifically said to us please don't tell my daughter that I am going to do this it is racked with pain she had ostearthritis because she will try and stop me and yes of course there are bad guys in the world we know that but you know most people want their parents their loved one to go on they want to encourage them I am thinking of my friend David who died of motor neurone disease last year he did everything in his power and his family helped him to try and combat motor neurone disease and he travelled down to London for trials and tests to try and prolong his life and you know I don't see this vision of the family saying oh well it's your time to go my mother went through two wars and a depression and if I said to her is it no time you've got a good post office book it's time you went she would have gone I'll make up my own mind thank you very much when it's time for me to go these are the 80 and 90 year olds I mix with I don't see all these you know and as I said Gordon said, the nephew said you've tried to stop them this is what I find amongst families they don't want their loved ones to leave and they don't want their loved ones to have to resort to this and frankly going to dignitas is not a joyful experience it is a horrible experience what people want is a dignified death in their own house with their loved ones around them perhaps with a glass of lagafolin in their hand or iron brew or something like that that's what people really want and support this and say this is what a civilised society would offer, the very few people who would take advantage of it Bob Doris Thank you very much Last week's session and this week's session we're getting a lot of individual direct experiences but then that leads us both last week and this week to generalisations been given in my opinion there are individuals who have family dynamics which will be very different depending on where you are and I think that gets lost a little bit in terms of those who perceive themselves as a burden not who are a burden I think the figures given at committee today was in Oregon it was 49% of those who were through assisted suicide saw themselves as a burden whether they were or weren't and I think it was 61% in Washington I apologise I've got those figures wrong I scribbled them down based we've also heard in this session I think the word exceptional this will be for exceptional circumstances I think we've heard that and we've heard the expression tiny numbers of people so we have to compare that when we're testing evidence with what the bill says and what the bill says is the bill provides those with certain illnesses or conditions who will be eligible to seek an assisted suicide eligible individuals will be those with an illness that is for the person or a condition that is for the person progressive in either terminal or life shortening that doesn't sound like tiny numbers of people to myself and I would be interested if anyone's done projections for how many people in theory not in actuality would fall within that scope I think that's important to know because we have to test that against tiny numbers of people and exceptional and to get to tiny numbers of people and exceptional will also have to look at if this does become law and it could become law is whose job would it be to offer the treatment choice we've heard of that before if someone goes to their GP and he goes this pain is really bad I'm not sure if I can go on should that GP be duty bound to say well one of your treatment options are if you go to the pharmacist and you have a chronic pain management in pharmacy to go review and you say this just isn't working for me if you get a nurse specialist dealing with your condition should they have to say that for many conditions there's managed clinical networks and treatment options and choices along the way should it be part of that managed clinical network I think that's important to know I don't think any of that is particularly within the bill and when any law is passed you normally need some form of public information campaign to make people aware of their rights I don't want to use that special advertising that's not what I mean but people have to be aware of what rights they can exercise and this would be a right if passed into law so who would make people aware of those rights who in the medical profession should have to make people aware of it and is there a danger irrespective of people's views here and I respect there's various different views here are there dangers if we don't clarify the roles and responsibilities and the balances in whose job it is to inform people and whether that could compromise our conflict certain individuals involved in people's care and I've deliberately not mentioned palliative care as part of that because I think that was well aired last week lots in there I would say virtually every week from the media saying have you got somebody who's going to dignitas could we follow them, could we follow their story and sadly it is the Freddie star ate my hamster syndrome and I come from that background and I don't defend that but what we do find is that the press generally will report perhaps overreport what is happening, what is available this is a complicated bill I mean I've spent the last year of my life reading it and rereading it and thinking oh my god how are they going to catch us out today or am I not going to be able to answer and it's a bill that could well be amended but basically I have no worry about this you know the people who live in government, the people who live in castle mill the people who live in Hilton the people who live in Dundee won't be able to understand this they won't be informed about their choices the bill is very clear you have to make your own declaration it's not as if you go to your doctor and your doctor says oh I think this is for you it's not as if you go to the pharmacist and the pharmacist this is something that people make a pre declaration they will have decided for themselves and very ordinary people do take their death very seriously and as you get older you take it more and more seriously I can assure you that it's not something that you wake up one morning and say oh this is really painful I'm now going to end it or most of the people I've known or met who have gone to Dignitas or taken their own lives have agonised about this sometimes for weeks months I'm not worried about the information I think the information will go out through the press and through debates and public events that people will understand what is available why it's available and the safeguards that there are for those who have misgivings about the bill Dr Somers I think we need to be very clear here that we're not talking about a right to die we're talking about a right to kill oneself to have help to end one's life now that's a very very different thing because in order to give somebody a right to end their life you need to give somebody else the power and authority to be able to make that happen and the thing that concerns me most about this bill and I say this as a doctor knowing doctors is that it gives far too much power and not nearly enough accountability to doctors and it gives it to doctors who are not really in a position to make the judgments that the bill requires and we're talking here about busy general practitioners who are under a lot of pressure who don't have necessarily the skills of pallid of medicine specialists are called and who don't have the skills of a psychiatrist who have been called to make judgments about patients they might have only just met whose family situation they don't know to assess their mental capacity when they might not have the ability to do that to assess undue influence to make a judgment about whether a condition falls within the broad range of conditions or whatever there's a huge number of pressures and I would say too that there are some doctors I'm talking just about a minority here but there are some doctors who really scare me that if they were to have this power and authority they would abuse it and I don't see anything in this bill to stop for example a shipment who gets a taste for killing and authorising to abuse this situation and what in order that there are not safeguards in this bill there are eligibility criteria and those eligibility criteria about the illness and capacity all that sort of thing can be stretched and at the end of the day it won't be even whether the patient fulfills it it will be whether a doctor is prepared to put a tick in a box to say that they fulfil it now we've seen in the parallel situation I know we're not talking about abortion today but take the abortion act in 1967 operates on the same system where doctors in good faith say whether a patient falls within a category was meant to be for a very small number we now have 8 million abortions in Britain 200,000 a year one in every five pregnancies ends in abortion and 98% are done on mental health grounds where a doctor ticks a box to say that the continuance of the pregnancy poses a greater risk to the mental health than having an abortion where in fact the academy of royal colleges having looked at this said that those meant that there's not actually evidence that that mental health ground ever applies now my point is and I'm sure we've got different views on that issue but my point is that once you give doctors the power and authority to be able to make a judgement to end life according to criteria and you don't have the teeth to hold them accountable they will push the boundaries and what worries me most about this bill is that the only provision that seems to be about keeping doctors accountable is one that lets them off it's section 24 the savings section which removes culpability for incorrect judgments inconsistent actions as long as they're made in good faith and it contains no penalties or abuses for careless errors nor any suggestion about how they might be investigated and I'm really worried about a small group of doctors who will if this legislation would be passed would be enthusiastic for this and would be difficult to they'd be given too much power that they can abuse you've made the point and it's caused some reactions and we encourage that and Dr Scott and I've seen Sheila Duffy and we've got about 15 minutes left in a session so I've got some others to get in Dr Scott Thanks very much very briefly I don't recognise the description of medical practice that we've just heard from Dr Saunders yes there is a reimbalancing of the relationship between doctors and patients implicit in this bill our view is that it empowers the individual it's for the individual to decide if this is appropriate for them Sheila Duffy If I could just bring in this reference to Dr Shipman I really do think this is unnecessary hyperbole this really is fudging the issue what this bill needs and it is a contentious bill is cool, clear, pragmatic discussion looking at the evidence and looking at the statistics Dr Shipman was an unbalanced drug-using individual who nobody would defend any of his actions under any circumstances and I think that just clouds the whole issue and what we need is cool, clear heads to look at the arguments for and against Bob Doris back in just to follow up my other questions I think given the time we've got left I'll just leave a comment sitting because I want to give Mr Harvey who's leading the bill the opportunity where your discretion is well, convener I apologise to the politician for accusing all my witnesses for not answering the question I asked but that's what I felt I actually asked about what the safeguards if you like or what the protocols would be for when a GP or a pharmacist or a nurse specialist would get involved in that conversation would they lead it, would they be passive within that process should there be guidelines over that and the variety of concerns that I have and irrespective of my personal views it's for people to bring forward certainty in relation to that and that's what I was hoping for and I have to say on neither side of the debate did I get any of that certainty I thought that the Mr Shipman comment perhaps did an injustice to some of the comments that could have been made in relation to some of the concerns I have and Mr Harvey with total respect to the question what you said is at a law bill right on the night but far be it from a politician to suggest that witnesses haven't actually answered the questions I asked but I just want to leave that sitting there on the night because there are safeguards built into the bill the person has to raise the matter themselves at the moment if I go to my doctor and say I'm in intolerable pain he or she will turn around and say this is something I can't discuss if we consider this bill then individuals will feel free to discuss with their doctor or their healthcare professional what their own feelings are I mean I'll read back over the official report I'm not personalising it to you Mr Harvey I'm just giving my impression of the evidence based on the question that I asked and I'll consider all carefully thanks Doctor McDonald certainly the evidence we've heard before from health professionals is that they they do raise the issue of suicide with patients when they are considering whether or not the person trying to find it with the person is suicidal and that if you were to legalise that that would have an impact upon their freedom to have those discussions with patients and the reason they have these discussions is because of suicide prevention strategies and the need to discourage people, the desire to discourage people from committing suicide so if we put ourselves in the scenario where this bill has been passed and a doctor raises the issue of suicide with the patient is the patient going to go away from that conversation thinking the doctor thinks I should commit suicide or is the patient going to go away from that saying I shouldn't be having these suicidal thoughts and I think that's a dilemma which does need to be got to the bottom of in terms of your point about who initiates the conversations and what processes are there I think that there's a lot of process in the bill in relation to ticking boxes and signing forms but there's no detail about where the conversation comes from yes a preliminary declaration has to be signed but at what point does this preliminary declaration get signed? Who raises the discussion in the first place? It's not clear that there couldn't be a suggestion put to somebody. I mean it's the extreme isn't it? But it's a historical fact that happened and in that case there was a second doctor involved or a number of second doctors potentially who signed the cremation forms and didn't give due diligence to what they were doing and that's what the concern is really is that this just becomes a tick-bock exercise I have family who work in general practice and are under huge pressure at the moment, huge pressure and they have 10 minutes to see a patient it's not even clear in this legislation that it will be the person's own GP that will be dealing with them it might be a GP they've never met before so I think there are significant issues to do with this proposal Richard Lyle I've listened to the small and very powerful argument statements can I turn to what a statement Jennifer Buchanan made earlier and compliment all the nurses who work in hospitals hospitals and basically deal with unfortunate death people at the end and you do give a lot of comfort to them and I compliment me for that but if I can come on to pallet of care we've had evidence received by the committee that's claimed that some people cannot be helped by pallet of care and assisted suicide could be a compliment to the care rather than the alternative do those opposed to the bill agree that pallet of care has its limits even though we have one of the best pallet of care possibly in this country but therefore assisted suicide could be a compliment to pallet of care rather than an alternative and even come back to the point that Dr Gordon MacDonald made is there any evidence that those with terminal and life shortening conditions are currently using suicide as an end of life option Do you want me to answer first? That would be good, Gordon, yes. You two go ahead and many of you We'll have a private discussion. So Dr MacDonald, I don't want to spoil that cosy relationship there and Dr Scott No, no, then Dr Scott I'm not a pallet of care specialist but the pallet of care specialist that you had giving evidence are of the view that there is no place in pallet of care for assisting people to commit suicide and I think you have to listen to the people who work in that area no doubt we can still have good pallet of care if we legalise assisted suicide the problem is that with pressures on budgets, with pressures on the health service and lack of training etc will people be given the access to the pallet of care and I do welcome the fact that the committee is going to look at pallet of care there was certainly a debate a few years ago there was a bill which Roseanna Cunningham was proposing about whether there should be a statutory right to pallet of care in Scotland and I would certainly encourage the committee to look into that whether or not we should be legislating for that but that's a debate for a different day I can't remember the second point that you made Is there evidence that with terminal life shortening conditions people are using suicide as an end-of-life option? No doubt Sheila would be able to quote you a list of people for whom she would say that was the case but fundamentally the question we have to decide is if some people are wanting to choose that option what is going to be the negative consequence on other people and if there is going to be a disadvantage in terms of putting them in a position where they feel under pressure either internalised pressure or external pressure and we heard last week from I think it was Baroness Finlay about the case of the elderly lady who was being visited by her relatives and then they stopped visiting her and the reason they stopped visiting her or the elderly lady indicated was because her life insurance policy had run out so there are concerns about that and it's a balance here ultimately suicide is not a criminal offence or attempted suicide is not a criminal offence in this country but in Scotland but assisting somebody to commit suicide is and we would say that that should remain the case Doctor Scott Thank you Yes Mr Lyle I would repeat what I said earlier that the evidence is that one person per week in Scotland who is terminally ill that's at present that's an extrapolation from figures in England the other point I think that's important to recognise that with regard to palliative care is that nowhere in the world most recently the province of Quebec which has enacted legislation to allow its citizens to manage their own death in one form or another has in the light of experiencing fit to repeal those laws the impact of the laws is so dreadful as the opponents to this legislation would have us believe I wonder why that hasn't happened Quebec has introduced legislation that combines palliative care and assisted dying it's possible Doctor Saunders The Quebec has but it has not yet been enacted and it's being challenged as well we could look over the border at the US where there are two states Oregon and Washington which have changed the law to allow assisted suicide but we must remember that there have been over 120 attempts to change the law in other states and all of these have been defeated and Oregon and Washington only changed the law on the basis of a referendum whenever it's been debated in a US state parliament it's been defeated even in those states which politically you think would have a balance which would be more open to this kind of thing with regard to palliative care we've got to remember that palliative care involves not just relief of physical symptoms but physical care, social care spiritual care, it's total person care and we know that when people have their physical symptoms and their physical, social and spiritual needs properly met that requests even in countries which allow euthanasia or assisted suicide are very very rare indeed and so that must put the onus on us to make sure not just that the very best care is available but that it's made accessible to people and affordable to people having said that, yes there are a very small number of people who despite all of the best palliative care want to end their lives but as I said earlier the overarching reasons for them wanting to do that are existential rather than physical it's about loss of autonomy loss of enjoyment of life, loss of dignity and there are many other people in this country who are not terminally ill or suffering any life shortening condition who want to end their lives most suicides do not involve people and they're wanting to end their lives for exactly the same reasons about loss of enjoyment of life loss of dignity and so on and I think we have to be very careful about the messages we're sending we know about the dangers of suicide, contagion, the verter effect and so on and it's very very difficult on the one hand to run an effective suicide prevention strategy and on the other to promote the idea that assisted suicide is actually a treatment option or an acceptable choice that we want to affirm for people who are wanting it regardless of whether they're sick or not for reasons of loss of enjoyment of life I think that's a very dangerous road to go down so we have to accept that with the kind of law we've got giving a blanket prohibition stern face, kind heart discretion to prosecutors and judges there will be some desperate and determined people who are not able to end their lives but that's, I'm afraid, the price we have to pay in a democratic society in order to protect the much larger number of vulnerable, disabled and elderly people I'm anxious to get to Rhoda Grant and need to get Patrick Harvie and then give him some time at the Enroda please Thank you, convener Can I refer members to my register of members' interests I have an intern from care and also from Inclusion Scotland on the next panel so I want to put that on the record Can I ask witnesses about conscience clause we've had some evidence on this previously where the bill doesn't have a conscience clause and we've been told that that is not devolved and we can't have that on the bill Can I ask witnesses how they would deal with this to ensure that people were able to opt out if they didn't want to take part in the bill in the future Anyone? Dr Scott Sheila Duffey or C Anyone else? Okay, Dr Scott Thank you, chair. Our understanding is indeed that the bill doesn't include a conscience clause as it's beyond the powers of the Scottish Parliament to put that in However, it's clear in the policy memorandum that no doctor should be compelled to participate in the process and it's well nigh certain that the general medical council where this bill to pass modify its regulation and standards to doctors taking into account the possibility of doctors not taking part in any part of this process Sheila Duffey, do you I think, Dr Scott's answer to the question now Dr MacDonald I mean, if there's not a conscience clause on the face of the bill then there isn't legal protection and it's not beyond the competence of the Scottish Parliament to engage in dialogue with Westminster even post referendum to ensure that there might be a conscience clause so I think that it's not acceptable just to say there's no conscience clause there has to be a conscience clause in legislation and it has to be a robust conscience clause the issue about other jurisdictions was raised the northern territories in Australia did legalise assisted suicide that was then overturned by the federal government and the federal parliament so it's not that there have not been places in the world where assisted suicide has been legalised and where it is now no longer legal just for a point of record very briefly Dr Saunders the HFE Act HFE Act the Abortion Act, Falkner's Act all have conscience clauses in them this one doesn't it's essential that there is one even when there are conscience clauses there are arguments in court about the scope of them the Glasgow Midwives case but when there's no conscience clause what happens is that the treatment that's prescribed becomes part of the full range of treatments required in that specialty will inevitably be pressure placed on doctors, nurses and pharmacists it's really essential Thank you convener and I thank all of the witnesses for their evidence supportive and in opposition to the bill I think we've heard some very interesting and reflective views I just wanted to pick up on a couple of points Dr Saunders a little while ago made some comparisons with abortion with the two doctor's signature requirement and you said Dr Saunders that over the decades there had been a change in the way that's applied compared with the expectation at the time can I put it to you that that change is more reflective the wider change in the provision of healthcare in this society which has over the decades moved away from a sort of top down authoritarian doctor knows best approach and toward a position which does reflect the expectation that people should have the right to make choices on their own terms informed choices and to be empowered to do so now there are clearly some people who don't think that that should be the case in relation to abortion I'm perfectly happy to say I do think that it should be the case in relation to abortion but surely the concern you're reflecting there should only be relevant to this bill to present evidence that women are being subjected to abortions against their will well my reason for raising the abortion act was not to get into a discussion about the ethics of abortion because I'm sure there'll be a range of views but I was just using it as an analogy and saying that when the law was passed in 1967 it really had very strict safeguards and the reason for that was to protection for the life of the unborn child my point is that the law has not changed but the interpretation of it has and that doctors now acting under good faith authorising around 98% of abortions effectively outside the intended original scope of the act my point is that once you allow a right to assisted suicide circumstances that kind of drift will happen and we see that in the same way in the jurisdictions that have changed the law US states of Oregon and Washington Belgium and the Netherlands that we see three key things happening. The first is an annual increment in the number of cases the Netherlands have 10-20% per year of voluntary euthanasia cases since 2006 the second thing is we see a widening of the scope so it starts with the term leil then it's the chronic leil it starts with adults then it's now children in Belgium it starts with the mentally competent it then shifts to the mentally incompetent those with dementia but the third thing that we see and I think this is probably the most worrying thing of all is that as time goes on we see a change in the public conscience and the medical conscience now that doesn't worry some people but it worries me a lot that what happens is the public conscience changes and so that you then come to accept a situation that 10-20 years ago you would have found intolerable now most people are shocked about what's happening in the Netherlands and Belgium at the moment but there are many people in Belgium and the Netherlands and particularly doctors who are not shocked and don't see anything wrong with what's happening and I think that change in the public conscience is something that happens once you change the law and people start to push the boundaries and it's not properly upheld I'm sure there's no intention at all to conflate accidentally a change in public opinion a change of medical practice and a change in the law some of the changes that you've cited I agree I would suggest that the public opinion the balance of public opinion is fairly clear already in favour of some form of change in the law towards assisted suicide but the context in which you made those remarks about changing medical practice changing attitudes amongst doctors were related to some quite extraordinary comparisons with for example Dr Shipman and I think you said once doctors have the power in my view this is about putting power in the hands of individuals about their own lives not power in the hands of doctors but you said once doctors have the power they will push the boundaries and your comparison with abortion surely is only accurate if that decision making power is being taken away from patients and imposed on them by doctors can I suggest to you that that's not the case with abortion we might argue that the legal protection has been taken away and the decision making power from the person that's aborted so that's what we're I'm prepared to indulge you Patrick in terms of the question directly put to doctors on this but I will take other bids but I can't allow to bend that up to one another and doctor so on this if you could come to your point and give the point was Shipman was not that all doctors are like Shipman clearly they're not but the point is that even with a law which was very strong someone clever like Shipman was able to get into a position with the collaboration of other doctors signing off drugs and cremation certificates to get to the point where he could kill over 200 people the point is that there are a few who will push the boundaries and that's why we need strong laws that are very clear and specific and most importantly are properly safeguarded in that they have strong penalties in reserve to deter and to deal effectively with exploitation and abuse and that's what we don't see in this bill it's a bill with eligibility criteria but without strong legal safeguards to protect vulnerable people I suspect all committee members would recognise that whether this bill is passed or not whatever the law says if wicked people choose to break it that's a serious matter and that can as example demonstrates happen in the absence of any law on assisted suicide can I pick up on something that Jennifer Buchan raised a while ago as well in discussion with yourself convener about the balance of views within a profession is it the case would you agree with me that the range of organisations which represent for example medical professionals, lawyers palliative care practitioners in many cases those organisations will take a position against a change in the law that's not necessarily reflective of the balance of views of people working in those fields is that the point that was underlying that discussion that you were having with the community? That's exactly right within every organisation that has discussed this even to the point where I had a member of the clergy come to me the other day and said hope all goes well at the committee meeting and I said that's great thank you because I support the bill but I can't say that I support the bill Do you think that that simply relates to the fact that organisations and the stance that an organisation collectively takes is part of the cultural norm part of the status quo and perhaps some organisations not to make this a criticism but just a reflection of the way decisions are made collectively by organisations might be inherently conservative to the status quo Yes Definitely I wonder if there are any other views on that matter I don't know if there is any other A great surprise that there might be some people who are members of the BMA or members of the Royal College of General Practitioners who might be in favour of the bill or members of the Church of Colergy in the Church of Scotland we live in a free and democratic society so that people come to different views but the point is that these institutions have considered the issue over a long period of time and come to a considered view which is supported by the majority of their members or of the people who are there so I don't think we can say just because one Church of Scotland minister or just because one minister or just because one doctor says this or a few people say that that undermines the considered position of the organisation Doctor Scott, please Yes, thank you Just to clarify what Dr McDonnell said the Royal College of General Practitioners in 2013 consulted its members throughout the UK on assisted dying there's 49,000 members 1,309 of whom remained opposed to any change in the law that's 2.6% of the total that is presented as a majority well, how representative is that? 77% of those who did respond opposed 1,309 in absolute figures out of 49,000 members Yes, but of those who responded to the survey which was a voluntary survey 77% opposed a change in the law 77% of those who responded Yes 2.6% Sorry I'm sure the committee are aware and we have heard evidence from individuals of the XDP and others but what I was referring to the committee can refer to is the evidence presented to it we have a representation from individuals and organisations and that's what we will be evaluating at the end of the day unfortunately we can't take phone calls Patrick if you wish to ask any other questions I'll put another one I'm happy that you should do that You're very tight for time convener, I think that the latter point about the difference between consultation exercises, democracy and overall balance of public opinion is probably speaks for itself and given the evidence we've heard Thank you thank you all for your attendance your valuable time, your written evidence thank you very much indeed we're going to break at this point suspend at this point till we set up for the next panel we're now reconvene and continue with our agenda item number 3 stage 1 scrutiny of the assisted suicide Scotland bill and we move to our second round table of still mourning so first of all welcome Richard threw me a bit there can I first of all welcome you all generally my name is Duncan McNeill I'm the MSP for Greenland, Llyver Clyde and convener of the health and sport committee Mary Neill, Dr Mary Neill is our advisor on the progress of this bill I'm going to ask everyone as I did in the previous session to introduce themselves and then we can move to our first question Good morning, I'm Bob Doris MSP for Glasgow and I'm deputy convener of the health and sport committee Sheila McLean, professor of law and ethics in medicine at Glasgow University Richard Lyle MSP, central region Catherine Farrelly I'm a member of the Scottish Youth Alliance and I'm also a carer from my mum who suffers from primary progressive multiple sclerosis Richard Simpson MSP Mid Scotland in Fife Dr Peter Benny I'm the chairman of the British Medical Association in Scotland and my working job is as a consultant psychiatrist Good morning Colin Kear MSP for Edinburgh Western Sally Witcher Chief Executive Officer of Inclusion of Scotland Mike Mackenzie MSP Highlands and Islands region Rhoda Grant Highlands and Islands MSP Good morning, I'm Dennis Robertson MSP for Aberdeenshire West Hello, I'm Tannock Mullough and I'm the parliamentary and campaigns manager for Parkinson's UK in Scotland I'm the MSP for North East Scotland Patrick Harvie MSP for Glasgow member in charge of the bill Right, thank you all for that welcome again to move directly to our first question which is from Bob Doris I've been exploring over the last few evidence sessions and that's in relation to whether if this bill is passed it would have a medicalisation of assisted suicide in other words assisted suicide with one treatment option within a suite of treatment options for people with a variety of life limiting conditions so I'd like some views on that in relation to whether that is the case or not and what safeguards could be put in place if it is the case in relation to whether and I used the example before whether GPs or pharmacists or nurse specialists or whoever should initiate a conversation with someone who makes it known to them that I don't think it can go on I can't cope with this pain should that then be presented at some point as a treatment option and if it does how does that medicalise assisted suicide with conflicts in that that can't be resolved or are there safeguards that can be put in place to ameliorate my concerns in relation to it I was kind of waiting for the microphone to come on couldn't see if it was on or not maybe just start by stressing that in terms of the British Medical Association we represent all branches of the medical profession so that's GPs hospital doctors, doctors in training medical students and retired doctors we've got clear policy against assisted dying and we would also be very strongly of the opinion that if this legislation were to proceed it must have some form of conscience clause in it in terms of this broader question that Mr Doris is asking about if the bill comes into law does that in effect mean that a discussion about assisted suicide could potentially be seen as being a necessary part of a discussion of therapeutic options it does seem to me clearly that that is a significant possibility from the bill however if, as we believe is essential there's a strong conscience clause in it then that leads to real difficulties in how that would play out in practice because you would have a group of doctors who would be protected by law from becoming involved in the process of getting involved in all of the statements and declarations that would need to be made and you'd have another group who would not be in that category and I think that would make it very difficult to actually have the kind of broad discussion about therapeutic options that doctors would always want to have Professor McLean that question is inevitable that this would have to be part of the on-going discussion with patients about what their options were in the same way as somebody coming into a clinician concerned about being pregnant and not wanting to be pregnant abortion is an obvious discussion that needs to be had I think the point that Peter makes about some doctors not choosing to be involved in it is important but again to use the abortion analogy which I hate to do but I think it's relevant here that the British Medical Association itself and I believe the GMC have made it clear to clinicians that if they are not prepared to participate in a pregnancy termination then they have an obligation to refer to another clinician who might be prepared to do so and I would imagine very similar guidance would be issued in these circumstances ask the question of medicalisation the bill medicalises assisted dying by only authorising healthcare professionals to carry it out so I don't think we can avoid the fact that it is medicalised at least in terms of this bill but it's medicalised only to the extent that it requires clinicians where they are prepared to participate to respond to the competent genuinely felt often repeated request of an individual patient who's made that decision I'm just trying to get my head round what the practicalities of this would be because we've had a variety of evidence on balance it may be based on the stakeholder groups we've had around this table over the last few weeks of concerns in relation to how it could potentially undermine a relationship between a health professional or allied health professional and an individual who may have a transient desire if that's the right word to not go on at one period of time but then that may change or fluctuate through the course of their experience whether that's because the better policy of care or their mental and emotional health improves or varies in that someone has to instigate unless the individual is completely aware that they have a right to sign this provisional declaration they have to get that information from somewhere, someone has to provide that information to them and what I asked the last panel was when this becomes a public health issue and I suppose it would become a public health issue there's public information campaigns and you have to know where to go so does that lead to promotion of I'm not trying to deliberately pick issues or escalate issues that are not there but I just want to be clear in my head how all individuals would equally be able to be aware that this is an option and how we could do that in a way that doesn't potentially undermine a relationship between a relevant professional and an individual I'm going to give my apologies to Dr Richard and invite her in at this point because she did try to catch my eye to the previous question but if you would like to address the further question is it helpful before I take the other question? I will do my best I think one of the difficulties I have is that in a way it's coming at it further down the line when we have some objections to some of the more fundamental starting points but I think if I can pick up on your question about safeguards I think one of the problems is that it's very hard to see where safeguards exist within the bill as currently drafted in very many respects and you may want safeguards in many respects you might want safeguards to be clear about the particular group you're targeting when we've already heard about the number of evidence from other countries about the expansion that ensues in terms of numbers and coverage it could be in terms of how do you challenge where something has not happened as the bill intended and the all out COPAC clause if it was done in good faith if it was inconsistent and didn't go along with what we said then that's fine now how on earth are you going to prove that the conversation that happens between a GP and an individual who knows what goes on there where's the evidence how is anybody actually going to see what goes on in that situation ultimately even if it were about bringing a case would it ever be in the public interest how would you know that relatives hadn't been pressurizing that individual there's so many issues and partly it's to do with the fact that people may come to a view about the quality of their life which is to do with factors like the experience of abject poverty caused by benefit cuts huge cuts to social care provision we heard from I think early on about Oregon where the reasons why people went down this road it wasn't to do with pain it was to do with things like loss of dignity it was to do with things like not being able to enjoy life anymore and a large proportion as well it was a fear of being a burden and I think the point we would want to make is that none of these are necessarily inevitable there seems to be we talked about medicalization where there really is medicalization in here is about this kind of a straightforward assumption that a person who has a medical condition a life shortening condition of some sort or another must therefore have certain quality of life and that medical professions are best placed to judge that the reality is that you could have a very severe impairment and experience a very good quality of life a very slight impairment and experience a very bad quality of life because what determines quality of life is not necessarily your condition is to do with the kinds of services that you receive whether the services and support you get accord you dignity autonomy, choice and control is to do with whether you have the money whether you're demonized in the press about the kind of attitudes you encounter the kind of culture we've got examples where people are and it's not uncommon that people are having to survive in nappies overnight, there's a particular case taken around this particular subject and some people earlier talked about a civilized society now the civilized society that we have today is one that thinks it's okay to leave people in that situation that thinks it's okay for people to be relying on food banks in order to survive now let's think about this now if that's when also if that's what you confront if that's what you confront as somebody who has a disability or an impairment that's the reality of the life you experience and is bullying in a care home whatever it is, the fears and so on and so forth the reality is going to be that life's not going to look terribly attractive is it and maybe if you haven't got dignity, choice and control in the way that you live because really rather more important to you but the point is it's about getting as the independent living movement has said repeatedly is about getting dignity, choice and control in the way people live their lives and supporting people to have the best quality life so talking about safeguard if you take your foot off that particular break if you say okay well it's fine for people they'll make the decision think about governments where you have a situation that actually they're not particularly interested in supporting people to have a good quality life because it costs a lot maybe their priority is about tax cuts for rather better off people well it's one way of dealing with a pensioner time bomb isn't it you don't do something to ensure people have a good quality of life what you do is you say well they'll make the decision leave it to them and they'll make the entirely same rational decision that this is not a life I want this is why the numbers of disabled people support the bill because we have daily experience of what it's like not to have autonomy, choice and control, dignity in the way that we experience our lives but it isn't inevitable that's my point I'd like to go back to Mr Doris' question if I may just I mean I think the discussion between doctor and patient is something which canvases all options it's not for the doctor to say I think you should choose an assisted suicide because frankly you're a pain or a drain on my resources or whatever it's for a doctor to say here are your options this is what I would recommend that's what doctors do all the time when they're discussing with patients so I don't see that it's a threat to the doctor-patient relationship in that sense if the discussion is being done the person still has to run through the hoops that are presented by this legislation or proposed legislation of making declaration after declaration which I personally believe is far too cumbersome given that other people can choose death by simply refusing life-sustaining treatment but that's maybe a different discussion if I make would it be permissible just to briefly touch on what was said by doctor Witcher it is a serious condemnation of any society when people with disabilities are treated inappropriately and I think your point is entirely well made the interesting thing though about Oregon that uses an example quite regularly today is that the vast majority of the people who opted for an assisted death in Oregon were cancer sufferers most of them were over 65 most of them were terminally ill with cancer oddly enough against what people had anticipated most of them were highly educated and three quarters of them were in hospice care or in a hospice programme at the time that they made that request so I think we need to take the concerns of the disability lobby very very seriously indeed and something that we as a society need to look at but whether this particular legislation would directly impact on this particular group of people more than others I'm less sure I just want to quickly come back to something that Sally says as a carer I've experienced a lot of things to do with my mum in terms of like wheelchairs and things like that and the way that people are treated does have a massive effect on their lives for example my mum a wheelchair broke she got a new wheelchair it was not right she phoned up and said can you fix this it was to do with the adjustment of a chair can you fix this and they said you need to wait a month we need to get an OT to come out and wait a month with a wheelchair that did not fit right it was uncomfortable for her to be sitting in and she needed to use it to be able to move around so things like that have a massive effect on how people feel also treatment and society things like something as simple as going into her restaurant and asking for a table for a wheelchair causes a panic and all you want is a table you're like show me the table and I'll move the chair out the way do you know what I mean it's a lot of difficult in terms of things like that because someone is in a wheelchair or suffering from an illness that they are there for not worth talking to or not worth as much as someone else and I think that has a massive effect on people and also about the promotion thing I obviously think that if it was to become law not that I want that that obviously people would have to know about it but I think that when you're talking about what you're talking about what you're talking about what you're talking about but I think that when you're talking about promotion there's a real danger that if it's being promoted then that's the only option and obviously if that's the case if people need to know about it we need to make sure that they are aware of every other option and it's not just seen as one option over another and I think that's a really really big danger just thinking further about this this question of does it potentially change the relationship between doctors and patients in which doctors are perceived by patients if this bill or something similar comes on to the statute I think that there's a real risk that it does I mean if you take a current discussion between a doctor and a patient which is partly looking at issues of is the person expressing a wish to be dead or expressing a wish towards suicide then at present that clinical discussion is primarily framed around trying to establish what are the reasons behind that wish and in particular are some of the reasons behind that wish linked to some form of mental illness now if a bill of this nature is in place then I think that does very much change that relationship to one where it is equally possible that that discussion is taken from the point of view of the patient to be as much about is the doctor perhaps forming some sort of judgment that perhaps my life is reaching a stage where I wouldn't want to live it and I think that there is a danger of that drifting into the kind of territory that both Sally and Catherine are talking about which at heart is about recognising the dignity of each individual and not trying to make prejudgments about what a person thinks about their own lived existence Anyone else? Rhoda? Just on this point can I comment and ask about how a doctor would react for instance if someone came to them doctor was aware of that person maybe wasn't very resilient and they made a request for assisted suicide the GP probably thinks well you know given time and given support they will not want and I suppose this is the interaction with the suicide prevention as opposed to assisted suicide if that doctor thinks that they are actually they will change their minds and will not want assisted suicide going forward can they turn down their request or do they then have to refer them to another GP who doesn't have their background maybe doesn't understand their way of thinking how does it interact with suicide prevention? I suppose I would start by expressing a degree of reluctance to get too much into the detail of the bill in that regard we've got very clear policy from within the BMA generated by democratic processes we're opposed on principle to assisted dying I'm not sure anyone around the table can answer from what the bill says what would actually be envisaged in a circumstance where a patient was having a discussion with a doctor let's say it's one of their GP's I'm talking about I'm interested in assisted suicide if the doctor was feeling well actually I don't think that's however I assume that what would happen in that circumstance would be that the doctor would give the opinion to the patient that in their view they didn't meet the criteria but I don't see that that would in any way stop the patient from simply seeking another doctor or another doctor Professor McWane Just to come back to something I said in response to Peter it's pretty clear I would have thought that assisted death is an option of last resort metaphorically and literally in the sense that it's only one of the range of options that you would expect doctors to canvass with their patients and I would not expect them to canvass it right at the very beginning just as they don't canvass you might need chemotherapy down the line they would say first of all let's try these options if they're going to work if they're potentially suitable and so it seems to me that of telling a patient that this is an available option to them is merely one aspect of a very complicated process of to and fro between doctor and patient and recommendations from clinicians as to what they think is best and to me it in no way interferes with the suicide prevention strategy because I would expect all good doctors to start by helping someone to live and not start by offering the option to die and I don't see why allowing it in the small number of cases where people canvass that whole path and still choose to die necessarily would have any impact on the suicide prevention that most clinicians would be committed to and most of the time I suspect it would come from the patient because the government any government that passes this kind of bill would have the responsibility for ensuring that its availability was known about Teasing that one out in the discussion this morning and the recent recent weeks autonomy rights a human right to suicide is a bit different from the managing of a patient that you have just described because ultimately there are people making the case its right its right to do that irrespective of or a wide range of circumstances where they would exercise that right and ultimately its their decision not the doctors decision so how do you frame law that takes account of all of that and all the pressures that may or may not be on people well that's what legislation around the world has already attempted to do and in some cases in many cases seems to have done successfully there is nothing coercive or anti-autonomous about advising people based on your own expertise about what it is that you could or could not do in these circumstances to alleviate your problems that doesn't defeat autonomy it simply helps people to make an informed decision as opposed to a random decision based on an impulse so the engagement of the professional has an importance at that level because what it does is to give people a message about their condition and what can be done about it that they wouldn't necessarily have had had they not seen a clinician at the time so the person still acts autonomously if they make the ultimate decision but they do it on the basis of as much information as the professional can supply them with about the range of options that's open to them including palliative care surgery whatever it happens to be I would like to also just make a point about rights if you don't mind I know I'm talking too much but there is, as somebody said this morning it makes no sense to talk about a right to die you have an obligation to die but you don't have a right to die what people are arguing for is a right to choose a right to act autonomously and the cases in the European Court of Human Rights have been referred to already but it's worth remembering that while they turned down Mrs Pertie's request and Mrs Perdie's request they nonetheless did hold that Mrs Pertie's article 8 rights to personal integrity had been invaded by the policy of the United Kingdom Government so they recognised it as an issue about personal integrity and autonomy and choice not as an issue about a right to die I think we've got Dr Witt, have we? Dr Witt Yes, Dr Witt of them and who are you talking about? I'd just like to come back on a couple of things firstly in connection with doctors and their judgments about the quality of life that the people that they see have or do not have I think as a disabled well certainly my experience in that of other disabled people and this is anecdotal is that whereas doctors members of the medical profession may be very well placed to say things about your medical condition, your prognosis your diagnosis the fact that it is or isn't a life shortening condition yep, that's one thing but as I've said before it is not the same thing as therefore being able to say that therefore your quality of life must be like this there's again anecdotal evidence around do not resuscitate notices being put without consultation at the ends of people's beds without them knowing because assumptions are made that that person could not possibly wish to be resuscitated given the degree of impairment that while these things happen whilst there are those attitudes within the medical profession then I think it's it's very worrying it's more than worrying it's alarming to think that people with those sorts of judgments could be having this kind of incredibly sensitive conversation with the person that they are wishing to advise I would also say to say to people and yes we are very directly affected by this I think an earlier remark was that somebody wasn't sure that we were a kind of a key group that this is targeted well we certainly are and you don't have to look very far within the explanatory manner random to see where it refers to the likes of us the likes of me but it's the question is around is it we need to be able to trust our medical profession that they want to what's best for our lives that they're not making these false judgments that they're listening to what we say and we need to be absolutely confident that any such suggestion is not driven by other considerations like the cost of the treatment is it out of care or just maintaining somebody over many years who has a life shortening condition the other point I wanted to make was about yes it is about autonomy and it is about choice and I know this is what the bill is concerned to promote but you have to consider what it is that causes people to make decisions coercion is very unlikely to take the form of somebody ahead with a blunt object that's not what happens it's so much more indirect than that it's about the messages you get from your culture that surrounds you you're part of that you absorb the messages about your life being worthless about being scroungers about all the rest of it you absorb messages about being a burden on the taxpayer you could say this isn't coercion but the pressure that's around you the kind of culture alongside the fear of becoming disabled there's so much a lot of I think the support for this kind of bill is driven by a profound fear of becoming disabled of aging, of becoming ill and what we need to be doing here is not say okay well let's make it easier for people with that profound fear to end their lives or to feel confident they could it's not terrible being disabled don't necessarily give a very good quality of life believe me but it's not that what you need to be doing is about challenging those negative attitudes and making sure that the public policy is there so that when you are old or ill or disabled that you get the best quality of life that you possibly can and the support is there and it's of the right thought to be independent living as equal citizens for as long as you possibly can I think I need to preface my remarks by being very clear that Parkinson's UK neither supports nor opposes a change in the law so my comments need to be taken with that in mind I was interested in the conversation about the doctor-patient relationship and the difficulty of having these conversations and it seems to me that in the experience of lots of people with conditions like Parkinson's this reluctance to raise these issues already exists in relation to conversations about decisions to refuse treatment conversations about potential loss of capacity as the condition progresses that sometimes I have heard clinicians say that they don't want to raise it because they don't want to appear to have written somebody off what we see in the charity is how that stops people from being able to make decisions at a time when they're able to make decisions and I just noticed that those concerns about seeming to write people off those concerns about potentially saying to somebody it's not looking good are already existing to inhibit conversations which may be helpful to people as they face their life of condition so it seems to me that the committee needs to think about whether there's a difference between the conversation about assisted dying and other conversations about the reality of life with a condition which is deteriorating over time that people are already facing Gafflin Fart Sally said about coercion I definitely agree I think that the way that people are treated is a massive effect on how they feel and again, as I said before there are a lot of things going on in society that make people feel that they're not worth things and obviously everyone is worth something everyone is worth the same and everyone should be treated like that I think that in terms of support for people who have conditions that it's not always there and I'm not saying that there isn't amazing support but it's not always there and it's not always easy to access support for the people that are looking after them and I've discovered that myself when I've been struggling it's not always that easy to access and it's not always easy to get support and not always easy to get the right support and I think that that needs to be there no matter what we need to make sure that people are being reassured that they're going to be looked after they're going to be cared for they're going to get the best quality of care and if they need something there's going to be someone that they can phone and say look, I need this something about it and you need someone to help you and I'm not being there has such a massive effect on someone's life especially for those around them as well and that again will have an impact on how they're being treated and by society as well people with these sort of conditions aren't always being treated the way that they should and that's ridiculous they definitely should be treated with respect and they should be counted among everyone else even such as because someone has a condition that needs to be treated with respect with care and things as simple as moving things out the way so that a wheelchair doesn't wreck a shop makes an incredible difference to how people feel I'll mark you down Dennis but I've got Richard Lyle I think basically the situation and I'll go back to Professor Sheila McLean I'd like to know the panel and I want your own individual views we all agree we all wish to hold on to our loved ones as long as we possibly can we've all had situations unfortunately where people have died and we wish we could have told them this that you know or whatever but shouldn't we also respect the right to choose to die if they want to die you know we had the situation earlier but a nurse was sitting holding someone's hand and they have to face that day so when people want to die and consistently asked this question in the last couple of weeks shouldn't we allow people the right to die your own individual views I think that I understand your point however I think that there is the possibility for safeguards and for people that have been coerced or pressured into it and at the end of the day laws are here to protect you laws are supposed to protect people and if just one person dies from this bill who didn't want to it's not protecting anyone it's not protecting the other thing about this bill is once someone's dead we can't bring them back once they have had assisted suicide they're gone we can't stop it it's done you can't change it for those people and I think that that's a massive point I was actually mainly just indicating that Catherine had been waving to you but I will say something about this the reason I was keeping a little low profile on it is Richard Lyle is asking for our personal opinions on this and I'm absolutely not going to be giving you my personal opinion on this I'm here to represent the British Medical Association having said that his question is about should people not have the right to die and I don't think that this is actually about this this seems much more to me about people wishing to have as much control as possible over the way in which they die and to some extent the timing as well but it's mainly about seems to me trying to avoid the for some people horrific known of what's coming but for many people horrific unknown of what's coming and that is the absolute core purpose of good quality palliative care Dr Richard Lyle and then Professor McLean I would echo a lot of what has just been said by both the two previous speakers I'm here representing inclusion in Scotland I'm not here to give a personal view but I suppose what I would say is that it's not it's about the wider good it's about there's all kinds of reasons why family members may wish their aged relative perhaps to be with them for longer or with them for less long again those of us outside of that family dynamic how are we ever going to really know what's going on here we're not, we're never going to know and that's why it's dangerous to proceed because you will never know the reasons why you'll never know quite what's happened or what's gone on that's the issue and if it's that this lays itself open to abuse to and it's perfectly clear that it does because by as much as the bill is trying to make it as easy as possible for people who want to go down this road to go down that road they all simultaneously and inevitably makes it as easy as possible for people to abuse it by the lack of safeguards that's the problem and the wider good says in my view and this is my view and I hope it's something that members of inclusion Scotland would also accept that if people do not wish to be ultimately, if they had autonomy choice and control over their lives they would never choose to go down that road but they're being pushed into it by all kinds of the factors I've already gone through and I won't go through again but including by relatives who would perhaps like to get their hands on the money and yes there are people like that out there sorry to say we cannot support something that can allow that to happen as a previous speaker said if one person is assisted not to die but instead it's assisted murder in effect that can't be allowed to happen in a civilised society Professor McLean the first thing to say is that the so-called liberal western democracies like we claim to be are based on a million principle which is that the state should not interfere to prevent people from exercising their free will unless they can show that there's harm rather than the other way around we can speculate that there are relatives out there who would like to see their loved ones relatives or others die but we don't actually know this to be a fact we also don't know that the provisions of the bill could not prevent that from happening so I don't know that that's entirely helpful speculation but also there's a problem in that there's a temptation in this debate not here necessarily but everywhere to second guess the decisions of individuals the law presumes every individual to be competent to make their own decisions and only if they can prove to the contrary would that decision be challenged in any other situation so if somebody makes a decision based on a judgment about their not somebody else's judgment about their quality of life but their judgment about their quality of life even if we don't like it there is a sense in which we should respect it as a society unless we can show that respecting it would cause significant harm to third parties and we don't have that evidence from any of the legislatures that have actually legalised assisted dying or voluntary euthanasia so we need, I think, not to speculate too hard about second guessing people's decisions Do we need to wait on the evidence from other legislators? Do we need to wait on the evidence from the other legislators in terms of how it's worked out there and then we would have evidence to proceed? Well in other ones would only be one country and it's not the best parallel as well on to euthanasia the best parallels would probably be Oregon would be the most obvious one and it's also the one where they've been very very efficient at data collection so you have a systematic body of information about who chose it I was picking up as I understood at the point that we have no evidence to say no Even in the evidence If we have no evidence to say no where is the evidence to say yes? Well that's my point If you base your society on a million approach which we theoretically do then the state has to prove that it has a right to intervene in people's freedoms rather than the individuals having to prove that they've got a right to make their own decisions Doctor I would not claim to be an expert in this but it's certainly my understanding that in Oregon it's specifically around terminal illness is that not correct? Oregon the law is specifically around terminal illness is that not correct? No, well you have to show that you're terminally ill which is one of the potential provisions in this bill in Belgium you can also be intolerably ill and again the interesting thing about Belgium is that when they legislated for assisted dying they simultaneously made it an absolute right of every citizen to have access to palliative care My point would be that this goes very very far beyond terminal illness of the current bill I don't therefore feel that Oregon is necessarily a very helpful comparison Dennis Robertson Thank you convener I think that to some extent convener we've heard that there's obviously pressures on people from society as to whether or not someone is a burden or someone is perhaps suffering and it's a point that Doctor made earlier when you were saying about a person needs to be informed but how do we determine that the person in that information that they have in terms of being informed isn't actually coercion I just wonder do we have enough protection within the bill to determine whether or not a person is making a decision an informed decision out with coercion and obviously there's a subliminal coercion that has been mentioned from the various societal pressures and if we look at people with disabilities and there's sometimes a fear about how progressive maybe their disability or illness can be and we had that example from Belgium which is perhaps an extreme one where twins who were deaf decided that they would wish to end their life for the fear of going blind now I just wonder that are we getting into an area where people might make decisions through the coercion but not through information Professor McQueen, thank you it's a very good question because the problem in some ways with that bill and with all the other bills is that if the principles that underpinned it were carried through logically you would have to allow anybody who's competent to make a choice for death that would be the absolutely immaculately philosophically correct approach and some of the problems start to arise when we try to limit the group to whom we think this opportunity should be offered the only thing I could say is that any patient who makes a decision whatever that decision is is truly informed and many of these decisions may be life threatening just as much as a decision about assisted suicide may be the differences that in the terms of this bill people have got a long time to think about it whereas the patient who opts for chemotherapy for example who is not adequately informed about the side effects doesn't have that time to think about it so in some ways as I would describe it means that there is a longer period of time for people to reflect and to find out information and to ask for more information than you have in the standard situation we don't know if doctors inform their patients properly or not we do know that there are doctors who are reluctant to tell patients to put a DNR order on them which seems to me to be unacceptable in the extreme but the trend in medicine seems to be towards increasingly informing patients and we should encourage that to be directed or direction and obviously there's the health and there's the social care there's families, there's carers, there's friends, whatever and what I'm trying to get is where do we draw the line between the coercion and being informed and is being informed directed through coercion sometimes that's where I I'm just wondering does the bill protect the individual from not having been coerced through being informed I think that Catherine point one go on Catherine what I was wanting to say is obviously the way you see things will have a massive effect on how it's perceived but also there's no way to guarantee that someone hasn't been coerced I don't think there's a way to possibly completely 100% guarantee that they haven't been coerced and for that reason alone you shouldn't really be considering the bill because you can't allow that to happen Anyone else? Yes please It's certainly hard for me to conceive of a way in which a doctor could be certain that there wasn't coercion and it seems to me that that's part of what doctors would be asked to try to arrive at a decision on within the bill and I don't know how you could be certain about that I do think that that decision making process is bound to be different in a scenario where the ultimate result is the planned death of a person that is always going to be different from having discussions with a patient about the risks or benefits of any particular treatment or having a discussion with a patient about whether or not there should be a do not resuscitate order and I'd very much back up what Sheila was saying about it's not appropriate to be placing DNR orders without proper careful discussion with patient or if the patient doesn't have capacity anymore with the appropriate people who represent that capacity but I think that's a very different issue from doctors effectively being asked to make a decision about whether a person has been or hasn't been coerced and on the basis of that decision then saying in my view as a doctor it is appropriate to proceed further down this route towards a planned assisted suicide Does the issue of just picking on Professor McLean's point there's the issue of coercian pressure just wider pressures on you that affect your decision making process to take aggressive intrusive treatment or indeed make a decision to withdraw from treatment which will result in your death there's no difference is there a difference between the type of decisions you would make in embarking on trws of aggressive treatment or withdrawal of treatment or assisted suicide does the coercian as it's been described here or the pressure any different on assisted suicide is it on any of these other areas of decisions you would take you know you would you would maybe be taking a decision to take that aggressive treatment not for yourself but apprehensive of it but as an instinct survival to try and keep your family together or you know the last chance you know I'm just trying to is there that principle of coercian or pressure on people to take any of these decisions any different from the pressure that would be on someone to take a decision to seek assisted suicide is it Professor McLean I can't see that it is it strikes me the critical difference between the two is that where you legalise assisted suicide healthcare professionals feel themselves to be directly implicated in a way that they don't in the same way if you refuse life sustaining treatment and that is what often is at the root of the debate it's not about an ethical issue it's not about coercian one thing that isn't in the bill and it just occurred to me when we were talking if there as you probably know in England and Wales if a decision is made that doctors want to remove assisted nutrition and hydration from a patient in a permanent vegetative state the house of lores as it then was indicated that that required it required a court to judge that that was the right decision the court of protection in England and Wales performs that function as it does in cases like Tony Nicklinson and so on in the somewhat belated additional report that I sent to you and I apologise for its lateness one of the things that I suggested was if these were genuine concerns bearing in mind that capacity to make a decision is a legal and not a medical concept why don't we have a judicial or quasi judicial body equivalent to the court of protection that decides on these issues and the courts have plenty of experience on deciding about whether or not somebody has been coerced into making a decision maybe that would provide the kind of ultimate safeguard that people seem to be looking for anyone