A dialogue on dying: examining assisted death in Scotland

The Royal Society of Edinburgh hosted a chaired public panel discussion on assisted dying, incorporating views from both sides of the issue of assisted dying to provide a neutral space for an informed debate on the topic. This event aims to offer balanced, evidence-based information for MSPs and encourage public engagement, inviting attendees to re-examine their views.

Transcript

This transcript has been automatically generated so may feature errors.

 

Kenny Farquharson  00:00

My name is Kenny Farquharson and I’m a columnist with The Times newspaper. It’s my honour to be here with you this evening. Once again at the Royal Society of Edinburgh, I was telling a friend of mine that I was slightly daunted being among these, these Rolls Royce minds while driving a Reliant Robin. But we shall have to bear with me. So bear with me. And the we’re here tonight to discuss the subject of assisted dying. And the motto of the Royal Society of Edinburgh, as you probably know, is ‘knowledge made useful.’ And well, this is precisely the kind of subject that were expert knowledge, whether through science or personal experience, has a crucial role to play in the national national conversation. And before we go any further, I have some housekeeping. You’d be delighted, almost like the housekeeping don’t mean they are there will be in the event of an emergency, you can see some details here for what you should do in the event of emergency. And the the exit is at the back, you probably came in that way. There’s also I feel like a steward at yesterday’s. There’s also an exit here on your right. There’s a meeting gathering point outside the dome nightclub, which I’m sure you know, on the right hand side, as you come out there. And the will, there will be an opportunity for a big chunk of this evening’s proceedings are going to be for you to ask questions of the panel. It’s essential part of the evening’s proceedings for us to grill them, and I hope you will show no mercy when you do so. It’s it’s an essential part of what we’re trying to do here. The a, I should also perhaps, a spell out some of the ground rules. There’s been a lot of thought gone into how this is conducted this evening. This has been a debate, a conversation. I’m trying to avoid the word debate, a conversation that RSE has been trying to have for some time and a lot of thoughts been gone, gone into how it’s conducted. And a few a few ground rules, then. The first is that the RSE, the Royal Society of Edinburgh does not have a position on assisted dying. The purpose of this event is to illuminate the national conversation with knowledge, insight, and analysis. So this event isn’t a debate I’ve been mistakenly use that word out there. It’s hard to move, not not to get caught up with that word. This is a it’s a discourse rather than a debate. And that is a deliberate choice a deliberate choice in this conversation. We don’t want an argument, we want a discussion. And so the panellists you see before you have been chosen for the expertise they bring to this subject, and not for their views, favouring one side or other in what can be quite a contentious debate. So I think we will have that understanding. But that’s what we’re doing here. Okay, this isn’t a debate with one side against another. This is about bringing expertise and personal experience, which have got a lot of on the panel to bear on a highly delicate and contentious subject. So with that, can I introduce to make some opening remarks. Liam McArthur MSP, who is the sponsor of the private member’s bill, on assisted dying before the Scottish Parliament just now.

 

Liam McArthur MSP  03:51

Thanks very much, Kenny, thank you all for being here this evening. I think my contribution is going to be a little different to that I’m used to, you’re going to be spared my usual elevator pitch, on assisted dying. It’s no bad thing. There’s probably plenty of time for that. On other occasions, can I warmly thank the Royal Society of Edinburgh for making this event possible, allowing, hopefully a safe space, a comfortable space to have a discussion about what is a complex or sensitive issue. But it’s an issue that I’ve got to know over over a number of years now matters a great deal to most people. It is an issue that we don’t necessarily in the political environment I operate in, discuss nearly enough and we spend an awful lot of time discussing how we might improve the quality of life but I think relatively little time discussing how we improve the quality of death. I think the other thing that has come home to me in the last couple of years in particular in developing the bill is that it opens up a conversation much wider than the con versation about whether or not you’re supportive or not of changing the law to allow for assisted dying, it opens up a discussion around other end of life choices, it opens up discussions about about palliative care what is palliative care? I mean, it has been, I think, quite surprising to me, the extent to which palliative care is often misunderstood by many people, even those within the medical professions. But as I say, it’s a debate that profoundly matters to so many people. It’s a debate, I’m pleased to say that in a political environment, where it is increasingly difficult to lead, measured respectful conversations, or even debates, this is one where I get the impression from the conversations I have with colleagues across the parties. That is a recognition of the seriousness of it, the complexity of it, the sensitivity of it, and the need to treat those issues with respect and in a measured fashion. And so I’m very much looking forward to hearing what our panellists have to say this evening on the issues that touch on on this show, the expertise is clearly not just limited to the panel, I can I can see a number around the room this evening, whose contribution to this debate is going to be equally valuable. So I look forward to to like, sitting back and listening if there are questions about specific aspects of the bill, that people feel that I might be able to assist. and clarify, I’m more than happy to do that. But I, as I say, I’m looking forward to sitting back listening to the discussion, I’m sure it will be a fascinating and illuminating one. The bill itself is in the early stages of its consideration by the Health Committee in the Scottish Parliament that’s likely to take place over the course of the rest of this year. So there’s going to be plenty more time to have discussions like this. But thank you very much indeed for coming along. In such numbers. Thank you very much indeed, Kenny, and to the RSE for making this possible, and I hope you find this evening, enjoyable. Thank you very much indeed.

 

Kenny Farquharson  07:13

Thank you, Liam. And as Liam says he’s going to be here for the q&a. Later on presenting the end specifically addressed to him. He’ll be more than happy to address it. So can I introduce you to our panel this evening. From the far end. First of all, Dr Kirsten Woolley is a GP and Craigmiller, and professional adviser to the Scottish Government on practitioner wellbeing and health and social care. Next to her the Revd Dr Scott S McKenna is a parish minister in the Church of Scotland, with parishes in Uddingston, Edinburgh and Ayre. Next to him, Dr Margaret McCartney FRSE, is a practising GP, and a senior lecturer at the University of St. Andrews. Professor Scott Murray FRSE is a retired GP and emeritus professor of primary palliative care at the University of Edinburgh. And Lynda Towers is a lawyer, who’s convener of the Constitutional and Human Rights Committee at the Law Society of Scotland, and as a visiting professor at the University of Strathclyde and can ask you just to show your appreciation for them being here. I’m going to ask each member of the panel to address one of three different aspects of this debate. First of all, we’re going to look at contexts where we are now where we start from. Second, we’re going to look at the lessons to be learned from elsewhere in the country, other nations elsewhere who have laws or have tried to introduce laws on assisted dying. And thirdly, we’re gonna look at practicalities where do we go from here? What happens now? So on the first one on fear, we are now as a society, what is our experience of dying of death? Now, first of all, I’m going to come to Scott Murray. First of all, Scott, what form does assisted dying take? No.

 

Professor Scott Murray FRSE  09:12

I thank you. So assisted dying now, in 24 takes the form of palliative care. Im biased, of course, being a professor of palliative care, but it actually assists people to die. But more than that actually assists people to live well, and then die well and grieve well, there’s a public facing campaign called good life, good death. Good grief. I hope some of you have heard it. The idea is to say part of care is about living well and then dying well. So there is now a large body of evidence, which supports this approach of palliative care, especially early palliative care, which can prevent suffering and give and giving person centred continuing care. And so I am going to try to make that research useful as Kennedy has invited us to do And I’ve distilled it into four roles, but pastors care. Okay, so that said, palliative care first of all, can help people with all illnesses at towards the end of life, when they have an illness becomes life threatening. When we start thinking about things, that’s when we’re suggesting it should start. So all illness is what do people die off nowadays? Well, it used to die quickly before now folk have dying slightly longer. The three main categories, people who are dying of progressive cancer, and that’s quite well known and relatively quick and recognised. Palliative care can help these people in many ways. Also, more people in cancer actually die of organ failure, that’s when the heart or the lungs or the liver or the kidneys pack up, and they die in a slightly different illness trajectory where they have dips and get better again, and the that do need palliative care for a longer period of time that can be for years. And they also benefit from part of care over the duration of that. And the most common group or have declining trajectories nowadays is frailty. It says slower one is like doing a slow walks compared to a fast tango and Oregon. Yeah, if you wish, okay, so the but all these illness projects. Polityka isn’t just about cancer in the last days and weeks of life, a lot of people seem to think it is that or traditionally that’s been thought it was never that in the first place it develops into that. So first point, there is good research evidence of people of needs and all these trajectories, and even intervention studies of training people better, so that the people, for instance, cardiac nurses trained in palliative care can give it can be part of the team to support our affiliate people. Same with Reno and the liver failure patients. And we’ve done with that. So the first thing, all illnesses even stroke, every professor strokes that stroke, palliative care doesn’t work. But if you have a serious stroke, care images with her might die. And so a palliative care approach is vital than that. The first step was all illnesses. The second door is all times part of care should start early in the illness as soon and then there’s plenty of time to chat with the person. You might think some people don’t really want to talk about their illness, what happened in the future is a bit scared, and they often are. But if you will say, Well, you’ve got this, you know, maybe you don’t want to talk about what you got. But we’d like to hear a bit about you know, what folk for who they are and the scores for people that have had your condition. Most people would like to hear about that. So they can be more informed because we know that people aren’t very tech literate to we’re trying to help folk, alt times is really vital improvement. When we start talking together, building up continuity of care, talking about it used to be advanced care planning in Scotland, it was anticipatory care planning, know its future care planning, we tried to find the best the best word, and it shouldn’t have a frightened him. And the care, palliative care should not in the old days, it stopped, its curative care stopped. And then it was time for part of care, no life threatening illness, we start introducing a palliative care approach. And so palliative care is adding on it’s an extra thing is not doing less, it’s doing more doctors should never say You know, I could do nothing for you. So that was the second or third all to all diseases, all times all dimensions of neat. Okay, so Dying isn’t is a four dimensional experience. I’m sure Scott would agree. physical, psychological, social and existential or spiritual. I got lung cancer 10 years ago, I was quite well at a time. But immediately, I was worried my wife is worried most people die of lung cancer. Why have I got it? So early on beginning of life threatening, it’s good for us to be acknowledged and the person supported to get it so early on, there are some and dying has these all the different dimensions and each person A, whatever illness you’re on, there are there are trajectories of the towards the end of life of not all physical and psychological and social well beings, big complicated. The latest trajectory, in fact was a trajectory of golf, because more people die nowadays have more than one illness and scald multimorbidity and the our team from Edinburgh wrote a paper in May of this year on how to care for people, palliative care for people with more than one illness. So we’ll continue more evidence on that. So that was about oh a don’t mentioned all settings of the master. Okay, so it doesn’t just specialist part of care. But the people die everywhere. And there’s 50,000 people in Scotland, I reckon. 56,000 die a year, about 50,000 would benefit potentially from part of care. If you look at if you look back at everyone who died in the year as I have done you look at their last year of life experience. It’s pretty horrendous. They get so How much curative here, palliative care is increasing. But even more than that, it’s lots of different things that happen. And they can’t see the doctor very well out of hours either. So there’s lots of issues there. But so settings is is actually in also palliative care, which is valid everywhere. Hospitals in primary care especially. And the in primary care GPS. Now the facility, they get funded a little bit in Scotland not so in England, it’s feel people are identified England, so the extra support to try to do this, and you could run the computers, pewter, a searches to find a patient who might benefit from this approach. So there’s ways of making time to introduce this approach, because it’s so difficult when a primary care is so fraught. So those are the four roles, I hope you’ll take them with you. So, you know, if, if I could have a capsule of palliative care, palliative medicine, have you heard of Halia, tourism? You know, you haven’t, but if palliative care, it was a capsule, it has no toxic side effects, and it gets to areas that normal capsules would. So it’s a hard thing to describe. And when people I know that both sides of the debate say that palliative care is a good thing. But if you asking so have you tried palliative care yet? Yes or no? It’s a very hard thing, I think to to actually, okay, that must be a fully informed information about palliative care. Because unless this person understands the real illness, and what might be available for palliative care, it maybe not so. So I would mustn’t, I would like palliative care now to go viral in Scotland. That’s what we need to do. There have been two recent bills in Parliament, which actually have supported this a carers bill and a patient’s bills so that they get the support earlier than in England, in fact, and more of that, but we are well placed to fast forward quickly part of care in all settings. So razmak is let’s press on with palliative care. I don’t know if we need a bill for it. That may be coming. But we must please resource that and we’d all feel better. We’d live better, die better, and grieve better. Thank you.

 

Kenny Farquharson  17:08

Thank you, Scott. Kirsten – In your experience, as a GP, how much awareness is there among people of these definitions and the options that are available to them? And the processes that we’re discussing tonight?

 

Dr Kirsten Woolley  17:27

Thank you. I think that’s probably quite difficult to answer. And I think there’s probably quite a broad range of awareness in, in different communities for different people. And interestingly, when I came in this room, I remember the last time I was here was 10 years ago to hear Atul Gawande, extolling the virtues of palliative care. And it was clear in that conversation that this country has a long, longer heritage and awareness of palliative care, as we’ve just heard from our professor, who are also calling Scott number two tonight. So number two, but I think adults, I think palliative care and DNR (do not ressucitate) forms are sort of often more typically medical language that we use, and they’re understood between clinicians. But patients probably really only start to grapple with them when they’re relevant to their own personal and individual patient journeys. And when they’re starting to approach what’s possibly the terminal stages of a chronic illness or or their final, final ailment. I think maybe there’s been an increase in awareness on the result of the pandemic, there was guidance to, to encourage these types of conversations. But I suspect given the complexity and some of the chaoticness that was throughout society at the time, it’s unclear whether that has stuck into the into the, you know, the society psyche. So I think these are terms that probably aren’t well understood. And obviously Scott’s explained palliative care and DNR forms that trip off the tongue is Do Not Resuscitate order. And I think that’s also a very complicated one for patients to understand. And in some countries, that’s called an and form which has a lower natural death. And I think there’s a subtlety in that language about what what that means. And that’s quite a lot for a patient and for their families to take on. So these are often these are common conversations that we have in general practice. Most often I’d say I probably have them in in people’s homes sitting on the floor next to them with you know, family members around and there’s always a lot for them to be taking on board in their conversations. You don’t just have once but you, you you start and you have them repeatedly to help people to understand, you know, The impact of what these things mean and that, although DNR are often sounds like you’re not doing something, it can feel like you’re taking something away. And so the nuance of that is very subtle. And I think people’s understanding of that can only be best optimised in the specifics of their own situation.

 

20:18

Margaret can you expand on that mean? How difficult is it for people to make informed evidence based rational decisions about medical care these days?

 

Dr Margaret McCartney FRSE  20:33

So, my big interest is an evidence based health care. And it should be straightforward, you know, you shouldn’t do crazy things because you think it’s going to work, you should make recommendations as a doctor because you’ve got some good quality evidence that this is a good suggestion. And also, you should have an appreciation of the unintended consequences, the side effects the hazard as well. So it’s going on. And I think somehow we’ve got ourselves in a position with I think we’ve got ourselves in a societal muddle. I think almost with DNR forms do not hesitate. It sounds like it’s a very powerful thing for a doctor to prevent someone from living, you know, it sounds like a like a kind of doctor’s god kind of thing. In reality, these forms are to protect people from having a very medicalized death. And I don’t think we get that message across very clearly. I think sometimes people hear the words palliative care, and they think they’re giving up on me, when actually the converse is true. In my mind, what we’re doing is we’re prioritising the patient’s values, and the patient’s quality of life. And that’s what we’re aiming to try and improve here. And we’re gonna be thinking less about cure, but we’re definitely thinking about care. And I think sometimes people hear those words and think they’re giving up on me, but actually, I think it’s often permission giving for the doctor to be honest, to stop doing super invasive stuff, that’s not going to help. And in fact, that is evidence that for you know, there was a big trial done and non small cell lung cancer, palliative care actually produced better quality and quantity of life compared with usual care in America, where they were probably doing too much mad stuff anyway. So I shouldn’t have said that but they’re probably doing stuff that probably wouldn’t have been done to the same extent, perhaps in other other areas. But the bottom line is that too much medicine is often a really bad thing. And it doesn’t help your quantity or quality of life. And yet, our narrative so often, is one that seems to infer that more is better, more is good. And less is bad, when actually, the opposite is very often true. In medicine, the great skill sometimes is a not acting rather than an acting, the great skill sometimes isn’t explaining to somebody that actually an intervention might not have the intended consequences and may actually make things worse. We know that is good systematic review is saying that in general, doctors and patients tend to overestimate the benefits from interventions and underestimate the harms of them. So we are geared towards thinking that more is always good, when actually, I think we need to take a huge step back from that and see what actually what are the what are the uncertainties in the evidence here? What are the pros, what are the cons, what might be getting wrong, and these are all done with the best of intentions, and nobody’s trying to do a bad thing here. It’s just the way that our psyches are gathered, and the way that our media works, and the way that we that we get information, quite often is bias towards action, rather than giving us fair and balanced information about all the potential possibilities of what one might or might not do.

 

23:24

Thank you, Scott McKenna. A, the from your your trip to Scotland Minister couldn’t tell by looking at you talked about not wearing a tie. Your pastoral experience, you know, what is? What does it mean to people that you encounter you minister to to have a good death? What does it mean, and what is division, a good death and a bad death?

 

Revd Dr Scott S McKenna  23:55

And I suppose I wanted to maybe just tell two stories, and that these are two individuals. But it could have been a whole host of different individuals. So two short stories really. One is Alex Bayne, who had an assister death in Victoria, Australia. He was 28. He had an aggressive and rare cancer. His family say that assisted dying, saved his life. For them, assisted dying was not about death. It was about life. And that was the lived experience. And for the last few months of his life, Alex was no longer powerless, passive, feeding pain and feeding indignity. He died in his apartment surrounded by his fiancee and family. And in a sense, Edie shortened his death, not his life. By contrast, a few months earlier, some months earlier, as reported in the Scottish media, woman had a black of Edinburgh died, stripped of dignity, and in distress, agitated, and in agony. She had three daughters. And she asked her three daughters to kill her. And the family was traumatised pastorally. I’ve heard many stories of Emma not many stories, a number of stories, where a son has been asked by a mother or a father to kill them. And the trauma is, is there. And people have people vividly recall it, it doesn’t matter whether bereavement is 10 days ago, 10 weeks ago, 10 months 10 years ago, and people can vividly recall a bad death. The recall every seems every nauseating detail. And so in my view, pastorally and from others around the world, a bad death leads to a bad bereavement. And I would say that a good death is autonomy, participation in decision making, the avoidance of infantilization. And the minimum use of medication and answer dignity. So for me, a good death is about dignity, and peace. And we you listen to the stories of Alex Bean, and Heather black, which are reflected in my experience, and many others, and you could have chosen any two. And it seems to me that that’s a difference with a good deaf and about deaf. It’s

 

26:50

Very powerful testimony. Thank you, Linda, from the Law Society. Why are we having this debate? Is it important? How important is it that this matter becomes something on the statute book, rather than something we leave in the very capable hands of some of our medical professionals, some of whom we have with us this evening?

 

Lynda Towers  27:15

I think that’s perhaps the most important underlying question. We live in a society, by its very nature has changed very much in what we as individuals expect to be allowed to do to be allowed to be part of society. And the first time that this was considered in Scotland was in the year 2010. The first time there was an act of Bill, I was listed at the parliament at that time, and I was advising the committee that was considering that bill. It was novel, it was complex, it was very, very sensitive. And it was raising all sorts of questions that had not been raised in Scotland before. And it was against a background of a number of cases which had been heard in the Supreme Court in various steps. And in Europe, the cases of pretty per day, and then eventually the case of Nicholson as well. And the Supreme Court, in London, House of Lords, some of the cases were at that stage, took the view that this was such an important part of society, and rights of people and protecting people because it’s protecting, as well as allowing people that that had to be dealt with by the Parliament of the land, whether or not that was Westminster, or in the context of of Scotland, the Scottish Parliament. These are the people we have elected to make these very difficult societal issues to be considered for society. And therefore, what we have at the moment is a set of case law that says this is very, very difficult. This is very, very sensitive, but it’s not for us the judges to make those decisions. It’s for the elected representatives, if you wish to go down that route, with all the issues that are arising. And I think that was probably the correct decision. Because had we left it to the judges to make those really difficult decisions. They’re not elected, they don’t necessarily reflect all the people and the different views that are across society. But even that’s not necessarily an answer of itself, because in the 10, while the 15, almost 15 years now, since these decisions, the first bill was done there and these cases pre predicted that the whole attitude within society towards rights has changed, and questions of protection. and how matters that are sensitive of that should actually be dealt with. We’ve we’re much more aware of the Human Rights Act, we have ongoing issues at the moment in relation to the legislation in Scotland, we’re about to get a new Scottish human rights bill. We are looking again at the mental health legislation and the adults with incapacity legislation, and all sorts of issues which are around the question of rights for individual, but also protections for individual. We don’t the doctors have been left to deal with it in without any guidance. And it seems to me that having legislation, which is properly considered addresses all the issues is undoubtedly the way forward, whether we pass the current legislation, whether this is the end of that story, not for us at this stage. But the discussions have to go on to reflect what is undoubtedly no an issue, society is going to have to make some kind of decision on in order to assist not just the doctors, but the individuals involved all the other people involved, advisors, lawyers, dot people giving an pastoral care, that needs to be given some support in the context of a framework within which decisions of that kind can be made.

 

31:26

Thank you, Linda. That’s good. So we’ve looked at the context, we’ve looked at where we are now and some of the definitions around these things. So the next section we’re going to ask the panel to address is lessons and warnings. And we’re going to look at our bad examples from abroad a lesson on how to do it better, or a warning not to do it at all, and was gonna look at various interest groups and what what their interest is in this and then Scott, I’m going to come to Scott gonna come to you first, if you don’t mind. A due respect, please forgive me. But you know, what rights do religious people have to be given a privileged role in this debate. You’re here as a minister of the Church of Scotland, why?

 

Revd Dr Scott S McKenna  32:18

Especially in a society, which has now 51%, secular, yet supported in the BBC today. So it does not, I don’t think the church or religious people have a privileged position. And that would be the first point in a democracy. It’s a basic point. In a democracy, every voice is welcome at the table, a person of faith or no faith. And that’s true of religious organisations, they have a voice, a voice, but not a veto. And that seems to be important. That’s the first basic point, I suppose the second point I would make the in my experience, for many people, the process of dying, it can lead to questions about the meaning of life, the meaning of my life, and of love, values, God, family, forgiveness, and belief in what lies beyond this life, if anything, these questions come up. And it seems to me these are bedside questions, bedside issues, for many people who are dying. And therefore, there is naturally a place for people with religious or spiritual or in philosophical perspective to be involved and included in the conversation or very often, just to kind of take the sting out of the word religion, I very often have people speak to me in their opening sentences are not religious, but and then they have a religious, spiritual kind of conversation. I think the other thing that’s true in terms of being part of this debate and discussion is that it’s very good, and had feet friends at the end, and the humanist society are willing to offer support from the third sector, and for people going through the process of assisted dying and for their families. And they’ve said that that’s on record. But it’s also true that across the world, clergy have and are supporting people who opt for assisted dying. And, and in Australia, for example, in the United nating church in Australia, the church has encouraged people close to clergy, rather, to honour the decision people have made and to support the people, the person who’s made that decision, and to pastorally and spiritually support the family to that was the Uniting Church in Australia, followed by the Anglican Church in Australia. I suppose one kind of finally idea here is that the church in Scotland and the UK will follow suit with the with what’s what’s happening in other parts of the world in terms of supporting people if the legislation is passed. Partly because it’s motivated by a compassionate, pastoral concern. And partly because of the enormous support for assisted dying. Within the membership of the mainline Christian churches, the statistics I have are 78%. From the Church of England, pupils supportive of the principle of assisted dying, six to 8%, from the Roman Catholic Church, I mean, obviously, different pools come up with different figures. But broadly speaking, that is the case, you will not hear that support from the official authorities of the church. And it may shock you to learn that the authorities of the church don’t always consult the membership of the church. But I would see that as support for assisted dying across Christianity, Judaism, Islam, Hinduism, Sikhism, and Buddhism is all there. So people of faith are part of society, and they have a voice to offer, I think, experience to offer

 

36:05

Yeah, thank you, and apologies for my question. That’s why I’m here. Margaret, can I ask you to address the you know, some of the most vocal opposition to assisted dying is coming from people from the people with disabilities? And how would you characterise their concern, and where they put the police this the hold in this debate.

 

Dr Margaret McCartney FRSE  36:34

In general, I think people with disabilities, I think, should be encouraged to speak up for themselves and be given a full voice at the table. You know, rather than having it filtered through a doctor, but I can see that there’s lots of, there’s lots of surveys that I think have highlighted that many people have many concerns, and completely understandable. I mean, we have to remember that we’re, we’re in a Scotland just know where NHS is falling apart, you know, is falling apart, you know, at the knees, social care falling apart, you know, a cost of living crisis, people are, you know, people are struggling to do things day to day, you know, normal human things day to day. And I think it’s very important to consider the context in which decisions are being made here. We’re not all equal, you know, some people are struggling to do the basic stuff of life, we’re not supporting our most vulnerable and poorest people in society, even slightly well enough. And I think it’s, we really need to consider that when we’re considering all the decision making and all the discussion in the space. The other thing I just want to say is that anecdotes are really powerful, often really useful, and but they’re not high quality scientific data, they certainly can provide a platform for you to go and start exploring things. But it’s possible to have anecdotes to say that M medical assisted dying was horrendous and awful, or fantastic, or you know, that you can find a story to fulfil whatever point of view you’re wanting to have. But if we’re going to make decisions, I would argue that they should be based on really high quality evidence. And that means looking for data in places that are not obviously presenting it going and finding out where the gaps are. Now, if you go and look in nm Canada, there is a recent paper that came out and people went and looked where the gaps in the data where the unknowns were the safety checks that should have been happening and aren’t. And there’s lots of concerns about that. So, you know, when you’re talking about making decisions on evidence, how high quality as evidence, what are the gaps? What are the uncertainties, and there’s lots and lots of them. But in terms of the real world, and where this is going to be made? Well, I followed em the gender recognition, act very closely in Scotland to see how well decision making was done. And I have to say, I was absolutely appalled, I should say, my one of my interests is I’m a director of Beira’s Place. And when I look and see whose voices were heard, whose voices were not held, who was brought to the table, who was not, I’m really pretty appalled. And I have to say that has given me very little confidence that the Scottish Parliament is capable of providing a high quality, high quality assessment of the evidence and looking for the uncertainties and the gaps in the unknown. When we were going forward to discuss this bill.

 

39:10

In the q&a, I might ask him to address that very point, because there’s been some discussion about that. There was some people writing in the press saying that this, this debate was very unlike the debate on gender. But the the concerns are certainly there. It’s maybe it’s something you can address at that point. And Linda realised this is a impossible question, but you what are the lessons from other countries that are most pertinent to this debate? You mentioned in your first two remarks about the idea of personal rights and in Canada that has been occurred John Stuart Mill, idea of personal autonomy and and free will, has been one of the driving forces behind In that one of the defining forces, and perhaps one of the flaws in that legislation, what can we learn from abroad good and bad.

 

Lynda Towers  40:09

I think what we can learn from abroad, or what options are available, various things that can be done and what would fit in that society, what I don’t think we should be doing is saying, well, it worked fine in some bit of Canada, therefore, it’s going to be perfect for us. Because we are a different kind of society, we have different ways we operate, we have different controls, we have different states of our, our health service, all these various things, which can all be very relevant. Therefore, I think it can be no more than guidance and things to think about to work out what works best for our society. And I don’t mean that in a non inclusive way, because, again, things might happen be better in different parts of the country, we’re, we’re quite an odd country, if I can put it that way. And that we’ve got a central belt, which is very much more centralised than rural areas and the islands and, and things like that, which may require different kinds of provision. And therefore what might work in a particular state elsewhere doesn’t necessarily work here. And I think also our different attitudes were at different stages of addressing things like human rights and autonomy, and of what our society would accept there for I think, you know, that there are real issues on that side. So I think it can be no more than guidance. And I don’t think we should be accepting things without seeing well, how is that going to work best in our particular areas. I mean, one of the things if I could just, I’m perhaps, preempt Liam, on the whole gender recognition debate, one of the issues which I think may well be thought about because of the particular nature of this. And again, it actually impinges on what happens elsewhere, is whether or not this particular debate would be allowed to be a conscience issue. And therefore, people would not be whipped, ie told by their party, how they had to vote. And I think the gender recognition, one, by all accounts, looking at it from outside as opposed to from inside, but I think there was certainly a degree of that going on for whatever reasons, which we don’t need to consider now. But I think if this were to be done on a free vote, which would allow people to vote along with their conscience, then that may make it an easier vote at the end of the day. But it does mean that our representatives would have to be well informed to be able to go out and discuss it with their constituents as to how they should be taking it forward. Now, that may be a way forward. Not it’s not going to answer all the questions, but at least it’s a way of addressing that.

 

42:53

I see we have at least one other MSP in the room with us today, which is very welcome. A, Kirsten can ask what happens when a family’s a person’s family partner, and friends, siblings, or the community around them object to something which may or may not be in the patient’s best interests?

 

Dr Kirsten Woolley  43:23

Are you talking in our current context? Or specifically looking in the future to the future? What if, yeah, so I think from what I’ve understood from our people to read about the bill, the views of the family aren’t mentioned in it, and that this is, you know, a decision for for the individual. And then the assessments are to be undertaken by two registered medical practitioners. So the views of the loved ones, and the community is doesn’t really feature in in the notes that I’ve read so far. And I guess as a GP, I found that that struck a chord with me and gave me pause for concern. I think, in my reading of the notes of of the bill, there seemed to be an assumption that GPs would be involved in this work. And in fact, they might be the coordinating registered medical practitioner. And I think that does. I think there are potential benefits from that. I think there’s there is a specific nature of the role of the GP in people’s lives from cradle to grave, and then to the people that those people have put in, you know, into their cradle. So I think there are some benefits around having GPs around around this, especially when thinking about the context around an individual and risk of coercion. But I think one of the things that worried me the most was that context that you describe where an individual may be seeking something maybe seeking an assisted assisted death, but their loved ones in there families aren’t in support the risk of the relationship that the general practitioner as an individual, but also within the whole organisation, how that might be completely disrupted and completely broken. So yeah, so I’m very concerned about about that particular dynamic..

 

Kenny Farquharson  45:19

Yeah that’s might return to that little discussions. And Scott Murray. You were talking about in your opening remarks, you talked about palliative care almost as an umbrella term. And I’m conscious that terminology in this debate could be quite, you know, difficult and perhaps be weaponized within this debate as for how we describe some things. So what you know, can you talk us through the terminology a little bit as to how often what clarity we need to have about what we’re talking about?

 

Professor Scott Murray FRSE  45:51

Thank you, Kenny. Yeah. Yes, this bill in the Medical Advisory Group report us a very wide and early definition of terminal illness. So that assisted suicide may be legal for any person who has, quote, progressive disease that can reasonably be expected to cause their death. This definition of the terminal illness was brought into practice in Scotland in 2020, supported by the Chief Medical Officer, specifically, so that such patients might be identified for disability assistance, and palliative care earlier under the legal side, change them, and it certainly wasn’t there, so that they will be entitled to assisted suicide at that early time in the course of their illness. You might think, Well, how would it come down practically? How would people be sorted to actually be eligible? Well, the tool that’s recommended to GPS and other ones is called the supportive and palliative care indicator tool. Now I know it quite well, because I actually, together with Kirsty Boyd invented it started it a number of years ago, and I’ve got a copy here. And so this is the cadence that GPS will get and others to assess if someone’s are eligible. So operationalizing, this you for an instance would be for instance, if you have a heart problem, and you’re breathless at rest, okay. That person will be permitted legally. That’s how things would work out respiratory disease, also, breathless is at rest, that ticks the box. Kidney Disease, people want answers that would also probably tick the box, liver transplant foot with dementia unable to dress you see they have dementia plus this extra bit that has started to progress. And progressions with these are highlighted so that we as GPS can identify people who are just starting to need a bit more extra support. So we can start. And so and we this, that was a very popular tool, it’s actually been translated into 13 different design languages throughout the world, in every continent. And it’s no the way to take forward early part of care and have colleagues throughout doing this. And so to find it, as a definition, it was it was designed, the definition was there. So we could start early part of it. That’s what this tool does. And it’s now being applied used. Not for that, but to identify people for assisted, dying assisted suicide. So it’s used not for the purpose for which it is intended. And we start to the to the latest one, that 2020 22 is the one that’s with the papers there. But it shows you that it’s very early. So it’s bringing together sort of a chronic illness and terminal care. And most people’s understanding of terminal care can as I said, last few weeks or days of life in terminal Kara is that didn’t turn Okay, that’s the sort of thing or his terminal, his name is Zoey, that person isn’t risk of dying immediately, soon, but no terminal means it’s likely that that illness I’ve got well, I identified it so that I know that person will start thinking about need support to consider how the illness will go. Not that we’d be offered. So I’d rather they get a good offer of early palliative care and working on that. Talking about things talking about the meaning of pain without meaning is unbearable. So starting to address these issues. So technically, this is a very, very early terminal care, which I don’t think be yours elsewhere throughout the world. That’s what people say the man the street voting for terminal care, is thinking it’s that rather than this area. So I think there’s an issue there.

 

49:48

Yeah, thank you, Scott. So we’ve looked at the contexts we’ve now looked at some welll scratch the surface. I’m aware. of some of the lessons and warnings from from elsewhere and some of the considerations from interested groups. This last section before we got the the to you guys for questions, we’re going to look at practicalities what happens now? Where do we go from here? And perhaps Lynda, we can start with you mean? What’s the political situation here with the bill? What’s how’s it likely to pan out from this point? And what’s the differences between this attempt to change the law and previous attempts?

 

Lynda Towers  50:29

Well, I’m not going to be tempted into seaying how it’s going to outcome, the end of the day. I’m far too cautious for that. The bill has moved on considerably from the very first bill that we had, which was in 2010. And then there was another one around about 2015. With different issues arising then as well. The first bill was quite narrow approach. And it was very much concerned, I suppose, with the the ECHR side of it. So the European Convention rights side of it, but also in ensuring that anybody involved in it was not going to find themselves subject to either the criminal or the civil law at that stage. And that I think, was very much a determining approach, because people were being prosecuted for assisting people who wanted to go to Europe to to receive treatment in in Switzerland. And there was a real concern that that should not be an issue arising out of the first bill. So it was quite an inflexible kind of bill. And it raised a whole lot of questions, some of which are still there today, but perhaps not quite as acute about if doctors were being involved, how far was the conscientious objection going to be allowed? What was going to happen? Were doctors going to get deregistered by the BMA or on the various other registrations, nurses that were being involved. And at random at the same time, there was also concern around the abortion. And there were two important cases in Scotland that time around the Goshen, Montgomery and Dugan, which gave them much more clarity as to how much information you had to provide in the context of sensitive and complex cases. So a lot of these kinds of issues that arose first time round, aren’t there. And the emphasis now is very much more on the individual making a decision and having the right to make that individual and take it forward. It doesn’t mean that the current bills still hasn’t got issues both around ECHR. And also around how matters arise. I mean, the point that was raised by Kirsty about not saying you have to consult the family members, and what happens if family members aren’t in agreement, there is a provision in as part of the assessment process, which says that you have to discuss the request with those close to the person. So what does that mean? Do you have a clunky list, which is not what’s happened in this to say you have to go through all these people and what what, just some person further up the list of more rights and other persons? Or do you indicate leave that close to the person, because that might not be a family member at all, it might be somebody who’s your neighbour, or whatever. So there’s all sorts of issues that will still have to be discussed. But that doesn’t mean they can’t be a proper solution found for it. But they do need to be taken forward. And there’s going to be a lot of issues of that kind that will still have to be addressed in this particular bill. But part of the whole discussion is for those things to be discussed in a reasonable and a balanced way to see whether or not you can reach some kind of balancing exercise because that’s what any piece of legislation of this kind is going to be a balancing exercise of the rights of all the people involved, and people to be satisfied that their views are being listened to and heard. But at  end of the day, there is the protection that I mentioned at the very beginning for everybody involved in the process.  Thank you, Linda. No, I’m conscious of time want to get to the q&a in about five minutes. So if we can ask the remaining panellists in this section, maybe to kind of keep their answers. Brief. Apologies. It’s my fault for not keeping in. In line earlier on. Kirsten. Lynda mentioned their conscientious objectors. A, what concerns do you have about the considerations for me medical staff who are going to be asked to deliver assisted dying.

 

Dr Kirsten Woolley  55:08

Yeah, so I think they’re quite significant. So I think the, the institutions around the medical profession have had a shift and are generally sitting in a neutral position. But I think the last time there was a poll on preparedness to be involved, it was still sitting at a fairly low percentage and a number of years, a significant number of doctors certainly expressing that the, although they wouldn’t be opposed to it, they didn’t necessarily want to be involved in it. And I think there would have to be quite a lot of discussion and clarity around those parameters, I found the, again, the notes are relating to the bill on the position of conscientious objector a little bit confusing, and it seemed to detail that it was the responsibility of the individual to prove should it be questioned, that they are legally allowed to conscientiously object and as a practitioner that made me slightly worried about why that burden would fall on me as an individual. I think if we’ve got a low uptake of medical practitioners wanting to be involved in it is a role that’s going to be expected of, of doctors, then I guess there’s a concern for patients who are then looking for this to be administered and delivered to them as part of their care journey, who then struggle. So I think there needs to be quite a lot of consideration around having robust pathways, and adequate training. And I think there’s a balance around the type of person who would be best placed to deliver this type of care, I think it’s obviously profoundly complex and emotional. And there would be a specialism within getting those assessments as perfect as possible. And so therefore, you’re, I think that makes you think you’re looking for people with an expertise in that. But again, I can also understand the role potentially for your generalist and the person who has delivered the majority of your care also possibly being desired to be in that role. And so I think there’s a good bit of exploration that needs to take place around around the potential for the different sorts of provider. Interestingly, again, in the notes, though, there was none of that expected to be captured from the data that’s expected from Public Health Scotland, there are a number of parameters that the bill was seeking to ensure that was collected and reported on an annual basis. And yet, which practitioner this responsibility was falling to, wasn’t part of that nor was, as far as I could see where this was happening, and what localities to know if there are particular areas where this happens across society, there wasn’t anything also around the impact on the workforce, there was no Workforce Data mentioned. And that’s, I think that’s something that would still be worth considering. And then as a tangent, but a critical, inherent part of that is, this is going to be considered part of the care that someone’s receiving in their final days. And the nature of care is to be emotionally affected by something. And again, the bill doesn’t speak to what level of support or supervision anyone who’s delivering this care would reasonably expect to get. And I would be loath to see this happen without reasonable provision of supervision and support.

 

Kenny Farquharson  58:23

Thank you. Thank you for keeping that tight. And Scott Murray, who would be eligible who should be eligible and who shouldn’t be eligible?

 

Professor Scott Murray FRSE  58:32

In fact, I’ve covered most of that. In this as far as the practical working in this session, we’ll be using this guide.

 

58:40

I was thinking in particular, some of the examples from Canada, for example, people who had mental illnesses, who felt just generally worthless, who for socio economic reasons who, who, you know, who had other than terminal medical conditions, you know, we’re coming forward for assisted dying. Yes,

 

Professor Scott Murray FRSE  59:02

then the guidance is actually off this list, which is meant to be used doesn’t say very much about these illnesses. And so, you know, that would be a gap that just. But I just wanted to mention that too. In my experience, most deaths can be peaceful, you know, with the current scenario and support and journalists like yourself, can drum dramatised and TVs do that, but there are many peaceful deaths where people are at peace. And there might be a danger in upsetting that mechanism where the patient can trust the GP or others to look after the best interests and not if I said all these things, or and by the way, I in Canada, I have to, you’d have to offer a assisted suicide or means Yeah, and that would be it would me alter the relationship Tthere. in a large group of of deaths, which are in there, as I said, they’re 50,000. Whereas I think initially the thought is that might be 25,or up to 500. You know, it’s, it’s 1.1 of a percent. So I think there’s a risk of, of relationships being harder.

 

1:00:19

And Scott and Scott McKenna, on conscientious objectors, could you see conscientious objectors within religious communities? You’re saying that the chapters would come around to it, I wonder if that would be the case for every individual cleric or minister, priest, imam.

 

1:00:45

So obviously true, that perhaps an example might be the way the religious communities have responded to same sex relationships, some have completely welcomed it, and are hugely supportive, and some have not. And that’s post that it’s likely that that would that spectrum would probably come, come again. I suppose the differences it’s about it really is about trying to support people and not invalidate their decision, but to support people in the last hours, days but I would expect a degree of spectrum.

 

1:01:23

Yep. Okay. Thank you for keeping that brief. domain for your point, during quick questions and answer do you mind Lynda? Okay, that’d be fine. Thank you, Margaret. Do you have concerns that might be barriers to people for all countries and socio economic reasons?

 

Dr Margaret McCartney FRSE  1:01:44

So one of my really big concerns is, you know, in general, I’m opposed to the medical industrial power complex. But specifically here, we’re giving doctors more power. But is this the power we want to be giving doctors, I would like the power to say, I’m going to give you perfect palliative care with loads of staff, everything you need, all the resources that you want, for the last few weeks of your life. Give me that power in a bill, please, first.

 

1:02:08

Thank you for keeping up with Ashley, do you want to come back on your point? Just very briefly. On the question, the microphone, sorry, not doing my job.

 

Lynda Towers  1:02:20

Very brief point about the question of mental disorders. And, yes, people in that context. It’s not unknown for somebody to have a mental disorder, but to be their medication to be totally stabilised their general condition to be fine. But they may also be suffering from a terminal illness. And at the moment in the context of how the bill is drafted, that person would be excluded from that, despite the fact they are perfectly capable of making a decision, which would be a reasoned decision, in the same way as somebody who perhaps is not suffering from mental disorder. Big because the may be totally related. And I don’t know the answer to that. But I wonder if it’s something that perhaps we should be thinking about? Are there particular categories. And then just to make it even more complicated, the whole question of what a mental disorder is, is up in the air at the moment, because we’ve got conventions coming in, which are to be adapted from Europe, on questions of disability. And equally we have I mentioned the bill earlier on the there’s a whole Scott review, looking at mental health and mental disorder. And then we also have the Human Rights Act, which also will cut across aspects of mental disorder. So making decisions now about what mental disorders may or may not have an ongoing impact and have to be looked at, again, very quickly, potentially, in the context of ongoing review of that as well. So there’s a big issue there. I think, as I say, I don’t have the answer.

 

1:03:56

Yeah thank you for intervening on that comment was a really important point to make the practicalities. Over to you, the audience know that the time for this has been shorter than I would like. So what I’m going to do is I’m going to take two or three questions about three questions at a time. And then ask the panel to take one of those questions that appeals to them more or they think they’ve got something to say. And we’ll we’ll deal with it that way. We’ll try and get through as many people as we as we as we can. So we have Lesley Ann and Jess with microphones. And so if you want to raise your hand and if you want to say who you are and if you represent any organisation or just represent your your fine, good self, tell us who you are. If you if you feel comfortable doing that. A and if you can address the panel generally rather than specifics that would be useful. We’ll have a woman right at the front here. Thank you.

 

Audience member  1:04:58

Thanks, everybody, for a very illuminating discussion on palliative care, I mean, I’ve was diagnosed with cancer and I’m hopefully cancer free, and it doesn’t return. But other friend who died in just recently alone, with someone but in a hospice here in Edinburgh, and she had no family, she wasn’t married, and a friend of for network who is a retired nurse, elected to be with her. Now, my friend, she had a horrible death in this hospice. And back to this thing that you’re saying this friend, who was there with her near to the end, is completely traumatised, and is in a situation of extreme distress. And she’s not young, she’s a bit older than me. And my fear Well, the things maybe kind of kind of jump back and forth. I mean, how can you know, there was something in radio in Scotland because my friend who died and the hospice, I don’t know what the term is, it’s weird, something happens. And and a woman phoned into radio Scotland, where her husband, which something happens in the person becomes more than just agitated and had a medical terminology. So it’s my fear, because I would like to have the right for me not for to suggest you know, that anybody else who doesn’t want to have the opportunity to an adult, like the term assisted suicide, to me, it’s assisted dying in an assisted part of life, because death is ultimately part of life, and nobody’s getting out of this alive. So it is really the the kind of the concern, and I think what you’re seeing, I can’t remember your name, the if there was a certainty of a complete wraparound, you know, end of life care. But with that, I think, opportunity and I’ll, I’ll close on this, to have the right, and the possibility, if you really feel that this is what you need to be able to have that autonomy and right of life and write of end of life.

 

Kenny Farquharson  1:07:09

Thank you. Thank you, for your, for your honesty there and for telling us your circumstances. Next question. The guy here.

 

Audience member  1:07:21

Hi, I’m here as an individual, I don’t represent anybody other than myself, although, obviously, I have family members. So one thing that I think has been missing so far in the in what the panel has presented is where we are today. So you provided context at the beginning, but I think is would be helpful to understand what the actual context is today in Scotland before any bills come forward, as opposed to what we might hear from England and Wales, because I believe it’s very different. We’ve never had in Scots law, the definition of assisting a suicide. And that suicide itself, I believe, has not actually been illegal under Scots law unless you cause public disorder. So I think it would be useful to understand where we stand today. And therefore what the bill is trying to change or add, in addition to where we currently stand.

 

Kenny Farquharson  1:08:21

Thank you. So I think we can do that. The perfect person for that. And one more, and then I’ll ask the panel to pick up things that was really the light right at the back. And Gary.

 

Audience member  1:08:34

Thank you for what you’ve all said, given the lapse of time, as it were between the earlier attempts at legislation in Scotland. And now. What is your view on society’s failure adequately to discuss and have dialogue on these issues? Certainly on an intergenerational basis, because I think there aren’t very many relatively young people here in the audience. And I think that discussion needs to be intergenerational, as well as interfaith and interdisciplinary. And I think we have failed society by not having that dialogue adequately, and widely enough until now.

 

Kenny Farquharson  1:09:19

That’s fine. Thank you. I’m going to one more question actually, because I want that to be a whole range of things that Yep, we’ve got people coming in, on online with questions. So we can have one of those from Lesley Ann

 

Audience member  1:09:34

given the issues with social care and care home costs, how do we ensure that the individual’s decision is not influenced by the pressure of being unable to meet these costs or feeling they are a burden?

 

Kenny Farquharson  1:09:46

It’s a really good question. I think a lot of people in the room will have personal circumstances that they can relate to that. Okay, thank you. That’s that’s a good selection. Can I ask? Well, Lynda, you’ve most obvious person is to address As this this job, she concerns here that

 

Lynda Towers  1:10:02

the case law from England is very persuasive in the context of Scotland. And you’re right that there isn’t a crime of assisted suicide. But the case on Scotland was such that if you assisted somebody to kill themselves, you may well find yourself subject to the criminal law in the context of man, manslaughter, or homicide of some kind. There was a case a number of years ago involving law Hospital, which was a case where nutrition and well, both nutrition and liquid was being withdrawn or that that was what was to happen from an individual who was in a vegetative state, as it was at that time. And the hospital went to the court and applied to something which is called the parens Patriae, which is some very ancient Scots law. And in essence, what and the court was asked to do was to allow the nutrition to be withdrawn. At that time I, I was the solicitor acting for the Lord Advocate at that time. And he was asked to give a provision to say that this was all right. And therefore he would not be prosecuting individuals, doctors in that case, who were withdrawing it. And being a lawyer, he turned it around the other way. And it wasn’t a saying I won’t do it. It’s that I will, I will further consider this but it is basically, it came as close to the ears, he could see that he would not prosecute in the circumstances where application was made to the court session. So that is the situation that we’re currently in. There have been very few cases since then. I don’t know how it’s working in practice in the community, with the medical community. And I probably don’t want to know, in some cases, but that’s certainly the uncertainty of the position of Scots law at the moment, which is why having a piece of legislation which at least gave some protection, both to the individuals and to the those involved is probably something that we should be fast considering.

 

Kenny Farquharson  1:12:20

Thank you for that. Very good answer. Very comprehensive answer. Revd. Scott McKenna, what do you anything that was mentioned that you want to address?

 

Professor Scott Murray FRSE  1:12:31

I think that I want to two things to say. I think the use of the word suicide is pejorative, it’s a decision. And I think the evidence would be that people who commit suicide and suicide really isn’t always a pastoral sadness and tragedy, but people who commit suicide want to die. And I think people who want assisted dying want to live. And if they could get better they would. And so I think that was one of the reasons I thought Margot McDonald’s Bill was flawed, because she called it suicide. And I also think another aspect of this discussion is that we wouldn’t want to leave here with the impression that palliative care can cope with all pain. Because I think the evidence is that that’s not the case. And that would be evidence from across the world. I suppose one of the things I did want to say we talked about dialogue, intergenerational dialogue and discussion. This has to do with perceptions of death and dying, are not give you the whole history. But over the last 200 years, how our society has dealt with death and dying has changed. In the Victorian period, people were concerned about the soul. By the end of the first world war that had been so much horrendous death, horrendous death, and also with the Spanish flu, that people wanted a pain free, quick death. And then by the end of the Second World War, the shift was away from the family home, into the hospital. And so the family so it’s away from the family, to the professionals. And that is a cultural change, which has an impact on conversations. And I think today, people want to try and rebalance some of that. And the evidence from people who have chosen and assisted death is that they are forced to have that conversation. And there’s lots of evidence of people who opt for in a certain families are forced to have the conversations.

 

Kenny Farquharson  1:14:37

Aand perhaps with us, as I think Kirsten said, you know, COVID has maybe had an issue that strikes as well and the threat of death quite soon. Kristen, what do you want to take from from what’s going on here?

 

Dr Kirsten Woolley  1:14:52

I think the online question, I think really stops you in your tracks and I think it reflects what the societal dialogue, the moral morality question, the legal question is about that balance around societies seeking out greater autonomy in the moment of death, but that being balanced in the legislation in a way that protects the vulnerable. And I think as Margaret was highlighting the need to be able to have more robust palliative care, in some instances, but in other instances to be able to have adequate social care for people. So there’s mentioned in the bill around being able to assess for risks of coercion, but they’re articulated as external. But I think that question about what if your, your circumstances are so dire that there’s that interpersonal coercion is another thing that we would want to be able to protect against and paucity of, of adequate social care, or entrenched poverty should not be reasons why people find themselves in need that, you know, that’s not what the intention of of the bill would be. But that’s what it still would need to protect against.

 

Kenny Farquharson  1:16:10

people not wanting to be a burden in all kinds of ways, financial burdens, as well as emotional and

 

Dr Kirsten Woolley  1:16:16

And whilst assisted dying might be an act, an act of care, they’re those broader ways in which need to be built to care for the vulnerable.

 

Kenny Farquharson  1:16:21

Margaret, what do you take from

 

Dr Margaret McCartney FRSE  1:16:24

it based on what you’re saying? And there’s, there’s a few things in that. Earlier on, I think we were talking about the feeling of, you know, people want an individual autonomy, they want to be able to enact their own wishes, and in many ways I can completely get where people are coming from. But I wonder why that is. And is it because we feel as though we cannot rely on society or doctors or medicine to help us and out of needs. And if that was the case, that would be a tragedy, I think, and it may be that we’re trying to frame the problem in the wrong terms almost. And I really worry that quiet voices do not get heard. And I can think during the pandemic, and I’m going to try not to cry of patients who did not want to bother their doctor, patients who kept themselves at home when they were really sick and ill and struggling, because they felt as though they did not have value, or they were not entitled to the same care as other people. And continually in general practice, we are trying to struggle to make sure that resources go to the right people. And it is so difficult to do even when you’re trying really hard to do it. And I really worry that there are people in society who will go from feeling that they are, you know, taking up resources that they are taking up space that they shouldn’t do, that they end up feeling that they have a duty to die. And that I think that would be an absolute tragedy.

 

Kenny Farquharson  1:17:43

Thank you very much that’s very powerful. Scott, what do you wan to add.

 

Professor Scott Murray FRSE  1:17:48

Thanks, I just say I’m so sorry to hear about the retired nurse who had such a horrible death that you described there. We need to improve palleative care, hospice dying is one or 2%, quite a small percentage, of course, and it can be lonely, even there, when folks are trying their best and you know, good palliative care could be. But we do need to do that. And we have to start this early dialogue in the course of the illness that it was hard to make a decision at the very end of when she probably was had delirium might be the condition she had. sound of it. But another phrase I just like to mention about public discourse about death and dying, the concept of realistic utopia, as an object through what would Scotland look like a realistic utopia for death and dying in Scotland? Because the Lancet Commission, a bit random, but 60 pages that we wrote a couple of years ago, Richard Smith and others who wrote it, and were tried to ask death, it was called the value of death, because death has one implicit value. We didn’t die, next generation come human. So there’s lots of actually positives about it. People can grow, dying can, you know, suffering can produce endurance, or look into a theological friend and suffering and character growth? And I’ve sometimes seen that as well. So those are my thoughts.

 

1:19:12

Okay. Thank you. Thank you for keeping that brief. We have 10 minutes left. So let’s try and keep maybe three or four questions, but very brief questions as as succinct as you can possibly be a challenge. Get your internal sub editor to go through what you’re trying to say. And again with the panellists will try and keep it very tight. There’s a man and a green cord here.

 

Audience member  1:19:37

Thank you to go slightly off kilter. Could you encourage Mr. MacArthur to speak and give us his reflections on what he’s heard?

 

Kenny Farquharson  1:19:45

That’s a very good point. Yeah.

 

Audience member  1:19:58

Thank you. It’s been really really helpful and honest conversation this evening. Thank you. I’m Aaron Chopra. I’m the Medical Director of the Mental Welfare Commission for Scotland. I am not speaking on behalf of the Mental Welfare Commission for Scotland. We haven’t taken an organisational position yet. We’ll wait for the consultation. The question that I did want to ask, though, was around scrutiny and whether the panellists feel that there’s enough scrutiny after the process that’s described within the bill at the moment. And if not, what more scrutiny would they like to see afterwards? I know that there is detail about Public Health Scotland, and quantitative numbers data. But I wonder whether we should go beyond that and what form that might take. Thank you.

 

1:20:43

Thank you for that. And perhaps one more was, there’s a woman there. Thank you.

 

Audience member  1:20:51

My name is Allison Smith, and I’m just here as an individual. Hasn’t assisted dying, always been practised by doctors in hospitals anyway? The Yorkshire programme? Was that not a withdrawal of food and water to people? And either that all overdosing with morphine. This surely these things have always been practice anyway, within the medical practice.

 

1:21:19

Okay, thank you. I took this chap’s point about the fact that we have the expert, Mr. MacArthur, and on this, and then a can have a microphone for Liam, I’m going to ask them, I’m not gonna ask you to address a general point, I want to ask you a specific question. And my specific question is, what have you learned this evening that you didn’t already know? What, what point or question? Will you take away? That’s giving you pause for consideration and thought from this evening?

 

Liam McArthur MSP  1:21:55

What have I learned, I mean, I’ve immersed myself in this for the best part of the last two, two and a half years. And there’s different takes on a lot of issues I’m more familiar with. And I think each time you hear an argument presented in a slightly different way, it gives you pause for thought. So I come away from this with a lot more to think about, albeit the terrain we’ve covered, I think, quite reasonably and is terrain that I’m fairly familiar with. If I could maybe just given that you’ve handed me a mic. Maybe addressed that the point that you suggested was coming my way after Margaret made earlier on, in terms of the, I suppose the capacity of the Scottish Parliament to deal with an issue of this time. I think the we’re almost without doubt that the gender recognition act debate, such as it was, a was amongst the most profoundly depressing in many respects that I’d been engaged in. I was engaged in it less than some of my colleagues on the committee. But nevertheless, I can’t remember an occasion where an issue. It was being wrestled with by the Parliament, where there were those on both sides, who, in a sense, felt legitimate to argue that somebody didn’t have a right to have a voice in that debate. And that felt like a very precarious place to be. I don’t think it’s going to help going into further detail about the rights and wrongs of that. But that was a profound difference in that debate. To any that I’ve experienced in 17 years,.

 

Kenny Farquharson  1:23:27

ow confident are you what gives you confidence that the same thing wouldn’t happen?

 

Liam McArthur MSP  1:23:30

Because we’re having this this meeting now, Kenny, this would not this would not have happened in relation to GRR, there is no question about it. This is the debate where if you look at the protagonists in the in the Parliamentary Debate on GRR and try and map it with where we are on assisted dying. That is that is very little overlap at all, the tone and the tenor of the debate that we’ve had on assisted dying now, in the same way as it was in 2014/15, when the last bill was in place, and broadly similar to the one back in 2010, is far more measured, far more respectful. I think, fundamentally, I can’t think of another issue, it’s come back to the Scottish Parliament to legislate as often as this and it’s and that I think, reflects the fact that this is unfinished business, it commands overwhelming public support. And therefore, parliamentarians are being confronted with the personal experience of many of their constituents. From the discussions I’ve had many of the parliamentarians in this session of parliament come with their own personal experience of losing a family member or a loved one to a bad death. And therefore, they’re engaging with this in a way that I think is very, very different. We need to decide whether or not a change in the law is justified, but the general principles of the bill are ones that we can support. And then we can get into the detail of addressing some of the concerns that Scott’s raised in relation to the definition of terminal illness, some of the issues around capacity some of the issues around ensuring that Those who feel a burden who let’s not forget at the moment, are being left without the support that they need. Maybe this is our portal into a way of addressing that. But getting into the detail of what that law looks like we can only get into once we’ve decided whether or not changing the law is one that we that one that we support.

 

Kenny Farquharson  1:25:20

Thank you very much. Take small some encouragement from that. We only have a few minutes left. So forgive me, I’m going to ask the panel just to a very, very to be succinct on a very specific point. What do you take away from this? And what is your point to ponder from? From what we’ve heard this this evening? What? What’s given you pause? Lynda what do you think?

 

Lynda Towers  1:25:45

I think societies move forward, I think we have moved forward to a certain extent. And I think I would agree that people are coming at the arguments from different sides. But that it is a respectful discussion. And for me, that is, I think, encouraging. I don’t know where we’ll end up at the end of it. And as I say, as far as the Law Society is concerned, we haven’t reached a final view on it. But I think if it can proceed on that basis, recognising the difficulties that are around this issue, then I think society can only be better for it at the end of the day, I’m not going to guarantee that this is the final version. But it’s certainly our very measured consideration, and steps on from where we’ve been before. And I think we just need to remember that at the end of the day, it’s an individual’s decision. And they need to be protected. And the people that want to help them need to be protected in the best possible way for it to be a successful outcome. If that’s what the final decision is that that’s the direction we’re going in.

 

Kenny Farquharson  1:26:53

Thank you for that. Scott McKenna.

 

Revd Dr Scott S McKenna  1:26:56

And I think one of the encouraging things is the seriousness of the discussion, which has taken place taking place here tonight, but actually in lots of other places, too. And I would say, certainly in the church, and in my community, people are very engaged in the discussion. And most people have thought about it, which is the seriousness discussion, I think, is a great thing. And the other point I would make is that it’s, as Liam indicated, the inclusion of as many voices as possible, has to be a great thing for our, our democracy, as well as the process we’re involved in.

 

Kenny Farquharson  1:27:33

Thank yo. Kirsten Woolley.

 

Dr Kirsten Woolley  1:27:35

Thank you. I think in preparing for this evening, the thing that remains in my mind the most is that is that balance, as we’ve highlighted around getting it right by autonomy, but making sure we’re we’re still protecting our most vulnerable in society. And and Margaret and I have both, I think spoken about some of those groups. And I think those who live in entrenched poverty, given the poverty rates in Scotland, are ones we need to deeply consider, especially when you reflect on the data from Amsterdam that demonstrate the underutilised the bill there. And so it seems to be the people who are better able to use their autonomy in day to day life who are best able to utilise the benefit of a bill. So I think I’m thoughtful about that. And the gentleman’s question that we haven’t had a chance to reply to. The bill description says it would be reviewed in five years by ministers. And I think I would encourage them to think more deeply and creatively about what information they do want collected and collated because there wasn’t anything cool qualitative, about the impact that the bill was having at a societal level. And we want that both, you know, doctors and patients are part of the same same community in the same society. But we would be wanting, I think, to understand the impact for both groups. So I would encourage

 

Kenny Farquharson  1:28:53

Thank you. Margaret McCartney.

 

Dr Margaret McCartney FRSE  1:28:56

I think decision making should be done with high quality evidence, if we don’t have high quality evidence, we should go and get it. And part of that involves identifying uncertainties. And I think there’s lots of uncertainties, some of which we’ve discussed here tonight, but many of which I don’t think have been adequately identified, nevermind addressed. And unless we know what we don’t know, we’re not going to start to answer it. So I would really call on a much higher quality evidence trawl before the bill comes comes again. So that at least the uncertainties are identified. And then you can look at what data gaps would exist and try and start to address them. And the other thing that I’m really worried about is that the quietest voices get heard. You mentioned the GRA. And hopefully, they’ll be learning from that. And that to me means that you go and find the most vulnerable people, the most vulnerable people that you can find in society, people who did not put themselves forward to speak people who were too shy or felt too unvalued to even do that. And you go and find them and you help them to speak and you help them to find their voice and then you act on that as well.

 

Kenny Farquharson  1:29:57

And finally, Professor Scott Murray

 

Professor Scott Murray FRSE  1:30:03

It’s a balance, I think between the autonomy, you know, for a few against that possible harm. A to a lot, much larger number. So there’s a balance there I think to be to be thought about and considered, and the need being a member here we have evidence of good a supported evidence, you know, would this be? Would we make this a randomised controlled trial? Would we normally go ahead and test this type of intervention where we wouldn’t normally, we don’t have the evidence to do it. You know, there are a lot of risks. That’s a thought, but we can hear more evidence and greater debate we will get there.

 

Kenny Farquharson  1:30:40

Okay, thank you very much, ladies and gentlemen, I’m very conscious is a very delicate subject. I think there isn’t anyone in this room who hasn’t thought about this in the context of themselves. Within a family tragedy or within a family bereavement, so is intimately personal for every single person in this room. So if you’re, if you’re having trouble with that, then there’s leaflets as you go out there with some resources that might help if you want to process some of the things that have been talked about tonight, and or with someone else, or just to help you do it yourself. I think it’s important that we take all this on, not just intellectually but emotionally as well. And so please feel that there is support for you if you need that. I want to thank you for your questions. Were very good. The panel very good. I want to thank you for coming on the show your appreciation for a very, very wise and learned panel this evening. Thank you.

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