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[00:00:00] Speaker: You are listening to Parliament Matters, a Hansard Society production, supported by the Joseph Rowntree Charitable Trust. Learn more at hansardsociety.org.uk.

[00:00:17] Ruth Fox: Welcome to Parliament Matters, the podcast about the institution at the heart of our democracy, Parliament itself. I'm Ruth Fox.

[00:00:24] Mark D'Arcy: And I'm Mark D'Arcy and welcome to the latest in our special series of mini podcasts tracing the progress of the Terminally Ill Adults (End of Life) Bill, the bill that aims to legalise assisted dying in England and Wales.

[00:00:37] In a moment we'll be looking at events in a jurisdiction that's had an assisted dying system for three years, New Zealand, and the lessons it might have for the system in this country. But first Ruth, there's been quite a lot of interesting action in the bill committee that's ploughing through the details of the bill at the moment.

[00:00:52] Ruth Fox: Yes, I mean the pace has quickened a bit. Notably, there have been various comments at different stages from Kim Leadbeater and others keeping an eye on the clock, almost, you know, noting that we need to make progress and so on. And I think they have made a little bit more progress than previous weeks.

[00:01:09] They're getting through things a little bit quicker, partly because it does appear as if some of the MPs who are supportive of the bill are making fewer interventions or shorter interventions. possibly to keep things moving along at a quicker pace.

[00:01:22] Mark D'Arcy: And that's a fairly classic kind of thing that happens when time is running short.

[00:01:27] The supporters of a proposition often almost disengage, let the other side make its debating points, but don't fire back at anything like the normal rate, just so that they don't take up time. It's something you often see, for example, in debates in the Commons Chamber on Private Members Bills.

[00:01:44] Ruth Fox: Yeah, I mean, it's important to stress this bill is getting more scrutiny than any recent Private Member's Bill, I can recall. And actually more scrutiny than quite a lot of Government bills, I can recall as well. So when we talk about the pressure of time and running short of time and so on, that has to be set in context. There's nothing that unusual about where we are in terms of the amount of time.

[00:02:04] But there is this pressure, obviously, of needing to meet the Friday of 25th of April to get into the next stage, Report Stage. put the bill back into the Chamber. They're mindful of that.

[00:02:16] Mark D'Arcy: And that might, for example, entail them sitting rather later than usual in the committee. Some very long sittings, 8pm or 9pm finishes to their afternoon sittings, for example.

[00:02:26] Which can get pretty gruelling for members of the committee who can be there, you know, 4, 5, 6 hours.

[00:02:30] Ruth Fox: Yeah, I mean, that's what we're hearing. As we are speaking, it's not yet confirmed, but we're picking up that there are proposals for the committee to sit longer into the evening. So at the moment they're doing two days a week, so two hours in the morning on a Tuesday and a Wednesday, and two hours in the afternoon on a Tuesday and a Wednesday.

[00:02:48] And the proposal is, we think, that they're going to sit longer into the evenings rather than eat into other days. I mean, that'll be confirmed, no doubt, imminently for next week's business. I mean, they've roughly, if you think about the Easter recess, is about a month away. So that will give them eight more sitting days on current arrangements to fill.

[00:03:06] Mark D'Arcy: Possibly a few more if they do sit some extra days, which doesn't seem impossible to me.

[00:03:10] Ruth Fox: Which is, yeah, another possibility. So, time is of the essence. But they are getting through things a little bit quicker, and I think that was inevitable because a lot of focus was in those early, particularly that first clause and the principles and so on, and it, you know, when we've talked to people like both Kit Malthouse and Sarah Olney on both sides of the debate, there's been an acknowledgement that the further they got into the bill, the likelihood was that it would quicken.

[00:03:34] And then, I think we've talked on the podcast before about tempers fraying a little bit. This is quite fraught.

[00:03:39] Mark D'Arcy: It's a bit of a manifestation this week. Kit Malthouse, one of the big backers of the bill, very senior former Conservative minister.

[00:03:47] Ruth Fox: Who of course we had on the podcast last week.

[00:03:48] Mark D'Arcy: Absolutely, our guest on the podcast last week, raised a point of order essentially complaining that votes against some of the amendments were, he said, being misrepresented and could anything be done about this. Of course, nothing can be done about it. It's not in the power of the Chair of a bill committee to tell MPs that they can't say things on social media. But he made his complaint and I think that did reveal a certain level of irritation, not exactly tempers fraying, but the kind of noises off from social media around this bill have just intensified and you regularly see clips of the committee being put up on social media This shows the evil of the other side and look what they're doing. It gets to people in the end.

[00:04:32] Ruth Fox: I mean, as I understand it, the specific point that Kit Malthouse was concerned about was the suggestion on social media that the Committee was not concerned about safeguards for patients with Down Syndrome They'd rejected an amendment to put on the face of the bill a provision to make it a statutory requirement to consult stakeholders, the Down Syndrome Society and others, for example.

[00:04:53] Now, the argument for the supporters of the bill on the Committee and for the Government, well, you know, they've already got a commitment to consult on guidance. It's not statutory, but they've given an upfront commitment to consult. They're already engaged in meetings with the Department of Health about upcoming guidance in relation to other legislation.

[00:05:11] And therefore, that practice would continue. So it's not that they're not going to consult. That's not the issue. The question is, this long running question, what do you put on the face of the bill and what do you leave to future guidance and so on.

[00:05:26] Mark D'Arcy: Absolutely classic problem for pretty much any kind of legislation.

[00:05:29] You can load all the bells and whistles you'd like onto legislation and it's a constant issue. But we were talking on the pod last week about how it might be rather ill advised for the backers of the bill not to be prepared to pick up some of the safeguards being suggested by critics of the bill and this week one such safeguard has indeed been accepted. It was an amendment from Jess Asato, the Labour MP for Lowestoft, who wanted a proposal that doctors, helping assess people's applications for assisted dying, should be trained so that they can spot coercion, coercive control, domestic abuse, essentially people who might be being bullied into seeking assisted dying. That was accepted.

[00:06:09] Now you might see that as very collegiate and here we are accepting suggestions from the other side of the debate. But the other side of the debate is just not that impressed that this one suggestion out of all the many safeguards they proposed has been picked up, but it's not nothing.

[00:06:24] Ruth Fox: No, um, if you remember last week I was articulating, perhaps not as clearly as I should have done it turns out, as various correspondents have suggested to me that I might want to clarify my remarks.

[00:06:34] So I was suggesting that there needs to be in the interest of public perception, there needs to be acceptance of the other side might have some decent arguments, and it would look very odd if some amendments were not accepted. I think I may have conveyed the impression that I thought that they should just accept some amendments so they could tick the box of public impression.

[00:06:54] That wasn't what I meant. What I meant was it's difficult to go through all these many, many hours of debate and think that the opposition to the bill had nothing sensible to suggest at all.

[00:07:03] Mark D'Arcy: Nothing useful to offer.

[00:07:04] Ruth Fox: Nothing useful to offer. And I, I get that the opponents of the bill, in a sense, they'll never be satisfied. So they're not satisfied by this amendment. It's a minor improvement as they see it, but they're not going to be satisfied. Fine. But I just think it would be a very odd thing to go through all these many hours of debate and think that your opponents had absolutely nothing to offer. But clearly, you shouldn't accept amendments just for the purposes of glossing over divisions.

[00:07:28] Mark D'Arcy: And indeed, this podcast seems to be having some influence on the debate because we were quoted, the episode we did with Dame Elizabeth Gardiner, who was the former Parliamentary Counsel who helped draft the bill, was being quoted by Danny Kruger, one of the leading players on the bill committee.

[00:07:43] Ruth Fox: Yeah, they've reached a stage of discussing the amendments from Ben Spencer, a Conservative MP who's a consultant psychiatrist who'd wanted to be on the Bill Committee and wasn't selected.

[00:07:52] Mark D'Arcy: And who, of course, we interviewed.

[00:07:53] Ruth Fox: And who we interviewed. He's the one who's put forward this idea of an Assisted Dying Agency to try and sort of draw out and flesh out, well, how is this going to be operationalised.

[00:08:01] What is the model that's going to be utilized for implementing this assisted dying model? And in the course of discussing around those set of amendments, is it going to be an NHS body? Is it going to be private providers? Is it going to be a mix? As you say, Danny Kruger quoted Elizabeth Gardiner's comments around the drafting of the bill because there's a big Henry VIII power in the bill, which would enable ministers by regulations to amend, repeal, or revoke other legislation. And one of the questions is, would they need to amend the NHS Acts to change the principles, if you like, of the purpose of the NHS. Because historically, going back to the founding of the NHS in 1946, the principles have been designed around securing an improvement in physical and mental health. That's the wording of that act, securing improvement in the prevention, diagnosis and treatment of physical and mental illness. So how does assisted dying fit with that?

[00:09:01] Mark D'Arcy: And this is where I have to offer a small mea culpa, because in an earlier podcast, I think I slightly overstated this. The Secretary of State has a duty to protect life. I think I put it a bit harder than I meant to. The point is, whether the assisted dying bill sits well within a plain reading of what's in the founding act of the NHS, the principles you've just been setting out, or whether they might need to be tweaked so that an Assisted Dying Agency of some kind could be placed within the NHS, if indeed that's what ministers decide to do.

[00:09:31] Ruth Fox: Yes, and that, that is still unclear, still to be decided, because of the discussion of Ben Spencer's amendments, there was a little bit of discussion getting into, you know, is this going to be a purely public, a purely private, a mix provision? There;'s been some speculation in the press about it, but at the moment we're not sure how that's going to play out, so um, we'll have to see.

[00:09:50] Mark D'Arcy: And next week looms what promises to be one of the most important votes in the committee. They get to clause 12 of the bill. Now clause 12 at the moment is the section of the bill that specifies that a High Court judge, current or retired, should preside over the assisted dying process, be the ultimate safeguarder and scrutineer of the assisted dying system.

[00:10:13] And Kim Leadbeater, the sponsor of the bill, is now proposing to replace that. There have been concerns that there just aren't enough High Court judges knocking around to oversee this process, and they're now suggesting instead there should be an expert panel. The importance of this is that in the Second Reading debate, having a High Court judge overseeing the process was seen as a very, very strong safeguard that persuaded a lot of MPs that this was going to be a safe system.

[00:10:42] So if you change that, if the ultimate authority over the process is something different, then what? Will MPs perhaps be minded to change their mind and not support the bill at later stages of discussion.

[00:10:54] Ruth Fox: Yeah, so this has been the controversial sticking point. A few weeks ago when Kim Leadbeater brought forward this amendment of course, it appeared in the press before it appeared to the committee, so there was quite a lot of speculation about what it would be. It's sort of known as Judge Plus, as she's described it. I think opponents of the bill are not quite so convinced that it's the level of judicial oversight that they were promised.

[00:11:13] Mark D'Arcy: I mean the general criticism is that they think that the oversight system that's now being proposed is very much a tick box system, that it wouldn't, as they see it, require an actual physical interview by members of the panel with the person applying for assisted dying. So there are all sorts of, as they see it, weaknesses in the system that suggest that it's not really going to provide a serious safeguard against abuse.

[00:11:37] Well, that's an argument that will doubtless rage across the committee next week. But it is looking like one of the most important moments because, as I say, this is a swing issue. MPs who thought they were getting a High Court judge are now getting something else. Are they going to be satisfied with the something else?

[00:11:54] Ruth Fox: But the whole purpose of a Bill Committee is to respond to questions, concerns and evidence. Yeah. And this is clearly one of those amendments that's emerged in response to the evidence.

[00:12:03] Mark D'Arcy: It's not fundamentally outrageous that people should seek to change this, they've just got to be sure that the people who voted for the Bill at Second Reading will still be prepared to vote for the Bill at Third Reading, having made such a change.

[00:12:14] Ruth Fox: Yeah, we'll see what happens.

[00:12:16] Mark D'Arcy: We will indeed. But in the meantime, we've been taking a look at an assisted dying system that's been in operation in another country for more than three years. This is New Zealand, where they brought in a Private Members Bill quite some time ago, and it's been in effect long enough to have a clear idea of what's happening under that system.

[00:12:35] Professor Colin Gavaghan of Bristol University is a specialist in medical ethics, and we spoke to him about how the system in New Zealand started.

[00:12:43] Prof Colin Gavaghan: There were a number of kind of false starts with this legislation. A number of bills were introduced. And for various reasons didn't make it over the line. So the genesis of this particular law actually was way back in 2012, when a Labour MP called Maryan Street had this drawn from the members ballot.

[00:12:59] We talk about Members Bills in New Zealand rather than Private Members Bills, but it's the same thing. That was drawn in 2013. It was withdrawn. Shortly before the general election of that year, in circumstances that were always a little bit politically murky, she said it was just not going to get the time it needed.

[00:13:14] There was a suggestion that, in fact, some of what was going on was a little bit of subtle pressure from the Government that they didn't want to be associated with something so divisive at that point. Whatever reason it was withdrawn, it was picked up and reintroduced shortly after the election by David Seymour.

[00:13:27] So this is one of the interesting facets about this subject. It doesn't really align with any particular political side of the Parliament. So Maryan Street was like an old Labour MP. David Seymour is on the very right wing of New Zealand politics and the ultra libertarian ACT Party. So he picked up the bill, changed it a little bit, reintroduced it into the ballot.

[00:13:47] It's drawn in 2017 from the members ballot. In between those two bills we'd had the first and so far only court challenge to the law in New Zealand, a case called Seals v. Attorney General, where a lawyer dying of a brain tumor brought a challenge against the blanket ban on assisted dying on human rights grounds.

[00:14:05] That case failed and it failed in a predictable manner, I think, with the court saying, look, at the end of the day, this isn't for courts to do. If it's going to change, it has to be Parliament. So, back to Parliament again, David Seymour's bill is introduced, there's a very long process of consultation that involves something like 35, 000 written submissions, 2, 000 oral submissions.

[00:14:26] Eventually this goes to a final vote in Parliament and it passes in November 2019 by 69 votes to 51. But importantly, an important clause has been added during that process, that it will only come into effect, the law's passed, it's now an Act, it's not just a bill, but it will only come into effect in the event of a successful referendum vote by the public.

[00:14:48] And that's the next stage in the bill's evolution. The same day as the general election, there are two referendums held on two potentially socially divisive issues. One is assisted dying, the other one is decriminalisation of personal use of cannabis. And it's an interesting process, because unlike something like the Brexit referendum, where people vote on the principle and then the details get thrashed out. This is the other way around. The Act is a fait accompli. There's no capacity for it to return to Parliament, to be modified. It's the finished article. So take it or leave it for the public. And the public vote to take it by about two thirds of voters in that referendum elect to say yes to this becoming law.

[00:15:25] Compared to other kind of socially divisive issues of our day, it was relatively civil until right up until the end when one anti group ran the most bizarrely fear mongering advert on television with the, with the elder relative in the hospital bed and literally their son and daughter in the corridor scheming about how to get their money and finish them.

[00:15:44] That really changed the tone right at the end.

[00:15:46] Ruth Fox: It would do, wouldn't it! .

[00:15:48] Prof Colin Gavaghan: It was some suggestion that that had been financed from overseas and it did have the tone of an American evangelical kind of, you know, Trumpian thing. That wasn't the tone of the debate generally. It was generally pretty civil on both sides, which was quite impressive.

[00:16:01] And so far I think that's largely been true here as well.

[00:16:04] Mark D'Arcy: But at the same time, the parallel referendum on legalising cannabis had a quite different result.

[00:16:11] Prof Colin Gavaghan: It did, it failed, that's right. So obviously our kind of political scientists and commentariat in New Zealand had a lot of fun picking the bones out of that one.

[00:16:18] So what does this tell us about where New Zealand is as a society? You can't really kind of map this onto a social liberal or progressive kind of dynamic? It's not quite that. So what's going on? I think what was interesting to look at was the age cohorts involved. Whereas you would normally expect support for what you might call socially progressive movements that come largely from younger cohorts, there was a lot of support for assisted dying from older people. That just didn't track across to the cannabis referendum at all.

[00:16:44] Ruth Fox: And where, Colin, did the idea of the binding referendum at the end of the process come from? Was that in the original draft of the bill, or was that something that was suggested during the course of it, or that the Government wanted before signing it all off?

[00:16:57] What was the sort of origins of that idea?

[00:16:59] Prof Colin Gavaghan: Really interesting origins, to be honest. It wasn't in the original bill, and it certainly didn't come from Government. So New Zealand is a proportional representation system, which means that small parties can have quite a lot of clout.. One of those small parties is called New Zealand First. It's kind of a one man band in a way, run by a guy called Winston Peters, who's been out of Parliament since the 1970s, and he is a very charismatic and very wily political operator. New Zealand First is his vehicle, and it's probably best characterised as kind of a populist party. It doesn't neatly align with left or right, and it's been in Government with both, but a populist party.

[00:17:31] So he and his MPs pushed for this to go to the public for a referendum and also the cannabis one. It's kind of on brand really for a kind of populist party that these issues should be decided in that manner. I don't think Seymour loved the idea. I don't think many others in Parliament loved it, but it was seen as a necessary political compromise to get it over the line.

[00:17:48] Mark D'Arcy: And now, of course, New Zealand has several years of operational experience of an assisted dying system. So, what have we learned during that time? What kind of cases see people applying for assisted dying? What kind of circumstances lead to people not being allowed to take that option?

[00:18:06] Prof Colin Gavaghan: We know a bit.

[00:18:07] There was a further year after the referendum before it came into effect, just to get all of the details worked out. So, in November of last year, the Ministry of Health published a report as they were required to do by the Act on the first three years of its operation and the findings of that were quite interesting.

[00:18:21] So we know for example that at that time 970 people had died over the three years of its operation. It's probably about a thousand by now. And that was out of about 2,500 who had applied to use it. So about 40 percent of those who started the process ended up dying by assisted dying. That comprises about 0.8 percent of all deaths in New Zealand. So about eight in a thousand deaths in New Zealand by that process. We know a bit about who uses it and we know a bit about who ends up not. So of those who die by assisted dying, the gender splits about 50:50. The age demographic, as you probably expect, skews towards older, 70 and older.

[00:18:58] The most common terminal illness diagnosis is cancer. And it skews heavily as well towards what we call New Zealand Europeans, white New Zealanders are the biggest cohort of users.

[00:19:08] Of those who start the process and end up not using it, there's a variety of reasons for that. The biggest one actually is people just die before they get a chance to do so.

[00:19:16] The process just takes too long and by definition, you're talking about people who are thought to be within six months of death. The process is thought to take an average of four to six weeks. So there's going to be some people in that period who just die naturally or die of the disease before they use AD.

[00:19:30] There's also people who lose capacity during that process. It's part of the law that they have to still be competent right up to the point of taking the drug. Some of them lose that. Some of them just change their mind. Not as many as I might have expected. I think it was just 4 or 5 percent changed their mind.

[00:19:46] And about 20 percent just don't meet the eligibility criteria on one or other ground. It seems to be the majority reason is that the attending physician just isn't confident they are within 6 months of death. So, for a variety of reasons, these people are not getting to the end of that process.

[00:19:59] Ruth Fox: And what are the eligibility criteria, Colin?

[00:20:01] Because it's slightly different, isn't it, to the UK?

[00:20:03] Prof Colin Gavaghan: There are similarities and differences, Ruth, yes, so it's, like the UK, it's 18 or over, you have to be citizen or resident of New Zealand, suffer for a terminal diagnosis that's likely to end life within six months, so those parts align with Kim Leadbeater's bill.

[00:20:16] The difference is that the patient also has to be in an advanced state of irreversible decline in physical capability and experiencing unbearable suffering, that cannot be relieved in a manner they consider tolerable. So it's not just that they're within six months of death, they also have to be in decline and suffering. They also have to be competent, that's true of everyone.

[00:20:35] Ruth Fox: So they have to meet all these criteria, there's no sort of either or and sort of a selection of these six criteria. It is all six, it's quite a high bar.

[00:20:43] Prof Colin Gavaghan: It's all six and it's quite high, but as originally introduced, I have to say I was a little bit involved in this at the early stage of the process, as originally introduced, it was a bit muddled as to whether these were either or, or and, because they didn't have the, you know, it wasn't explicit whether it was an and or an or, but as finally implemented it was and, it was all of these criteria have to be met.

[00:21:04] Mark D'Arcy: And there is some thought now of changing these criteria. I mean one of the concerns In the UK legislation, it's slippery slopism, that you'll start with quite strict criteria and they will be loosened. And there is some talk of, of loosening New Zealand's criteria a bit, isn't there?

[00:21:19] Prof Colin Gavaghan: There is a bill, so another ACT MP, another member of this kind of libertarian party is introducing a Member's Bill that would vary one part of this.

[00:21:27] And that would be that the requirement that the patient be, or estimated to be within six months of death, would be removed under this bill. So they would still have to have a terminal diagnosis. But there wouldn't have to be a kind of prognosis of how long we've got left if this change happens.

[00:21:41] I think the logic of that is that twofold. One, that it's just genuinely thought to be quite difficult to be precise about it. And secondly, that it's that uncertainty about how long we have left seems to be the main reason why patients are not satisfying the eligibility criteria. Now, whether you think that's a good thing or a bad thing is, of course, a political and moral debate. But that's part of the thinking is, It's not that they're definitely not, it's just that it's very difficult to say with precision how close they are to the end.

[00:22:07] Mark D'Arcy: The proposed new law for England and Wales at the moment doesn't include unbearable suffering or intolerable suffering among its criteria. You have to have that six months diagnosis. There is already some suggestion that it's wrong to exclude people who are facing unbearable suffering. Is that something that might be brewing in New Zealand as well?

[00:22:28] Prof Colin Gavaghan: There always has been, Mark. When this was introduced originally, as I say, I think David Seymour's idea that it would be any one of these criteria would suffice.

[00:22:36] It was fairly late in the day that it was amended to make the terminal diagnosis a kind of sine qua non of eligibility. There was a lot of pushback to that from the kind of pro assisted dying movement. A lot of people say, well, what about people who have a very horrible degenerative disease, for example, that might keep them alive for several years?

[00:22:52] And it's, it's very grim, but they're not actually within six months of death. It's not just a political compromise. I think it goes right to the moral background to the law. What is it we're really concerned about here? You know, is it autonomy? Is it alleviation of suffering? Is it dignity? What is the real underlying politically and morally for this legislation?

[00:23:09] So you'll never please everybody with it.

[00:23:10] Ruth Fox: One of the big debates here is, is around how this is going to be operationalised. What's the method of delivery? Is it going to be through the National Health Service? Is it going to be through private providers or a mix? And whether there should be something like an assisted dying service or agency? Broadly, how was it done in New Zealand?

[00:23:28] Prof Colin Gavaghan: The Government decided early on that this should be a service that is largely provided by the state. They wanted to avoid privatisation of euthanasia, as it was seen by some people. Having said that, there are certain differences in New Zealand healthcare. So when I went to live there, one of the first shocks to me was the first time I went to a GP and they hit me with a bill for it, so you pay for GP visits.

[00:23:46] So the first time the issue is likely to be brought up, it might be in consultation with the GP, but that will be in the context of a paid for service. Everything that happens after that, the tab is picked up by the state. Okay, so what would happen then normally is that the doctor would contact the Assisted Dying Service, they have a list of healthcare providers who are willing to facilitate this or to work within the service.

[00:24:07] There's only about 150 people on that list to be honest, so they're stretched a bit thin. They would then be brought in to assess the patient, a second doctor would be brought in to assess the patient, a report is made to the registrar, a day is decided when the substance will be administered or given to the patient. And that prescription will also be paid for by the state.

[00:24:26] Ruth Fox: One of the things you just said there, that the number of people who are able to provide this service, they're a bit stretched in terms of resource. And it struck me in the skimming through the review that's been done of the Act, that one of the things that's highlighted is that there is insufficient support available for practitioners who are actually providing the services. And that they've noted the work can be personally fulfilling, but it can also be isolating and emotionally draining, which I thought was really interesting because I've not heard that discussion come up too much at the moment. There's very much more sort of institutional focus about how this is going to be delivered, but not so much about what the psychological implications are for the staff. The focus has been very much on the patient.

[00:25:07] Prof Colin Gavaghan: It's definitely taking place in the medical profession, and I chaired a debate with medical students yesterday at Bristol University about this, and they're thinking about it a lot, you know, what it would mean for them to be involved in this process. And you're absolutely right, so some of the research that's been done in New Zealand, including by Jeanne Snelling, a former colleague of mine, found that even people who support assisted dying, who think they're doing a good thing by being involved in the process, can still feel it isolating and draining.

[00:25:30] And that, I think, in part, it's just an inevitable facet of the kind of work it is. Probably it's also a facet of the fact that there are so few currently involved in it and that that burden is falling disproportionately on them. It's also just a practical burden. New Zealand's quite a disparate population and maybe if you live in Auckland or Wellington you might have quite ready access to support but those doctors are having to travel quite far and wide to do this.

[00:25:56] And I guess maybe, there's lots of aspects of healthcare that must be emotionally very, very draining. You know, imagine working with terminally kids or something, but at least you'd have the support of colleagues around you who've had similar experience and who you feel you can talk to about it. I think there's a concern that that's maybe not quite happening to the same extent, at least at the moment with assisted dying.

[00:26:14] Mark D'Arcy: Now you come at this from the position of being a supporter of assisted dying. What do you think the UK has to learn from the New Zealand experience that perhaps isn't in the current proposal?

[00:26:25] Prof Colin Gavaghan: I think two things I would say. One of them isn't really something I put into the proposal. There's been a lot of talk about resourcing in terms of how much will it cost and that's entirely reasonable. I think what we're learning from New Zealand is there's also emotional resources involved here and some of the suggestions from the review last year didn't really suggest amending the legislation but thinking better about how to support both healthcare providers and patients. Because one cohort they pointed to that I'd never thought about before is what about people who apply for this what about these 20 percent of refusals who apply for this and are told no you don't meet the eligibility criteria.

[00:26:58] There's a danger of them feeling abandoned and betrayed. One coroner in New Zealand has talked about the risk of them going and, you know, taking their own life at that point out of desperation. So there's a lot of thought going into how you support those patients, how you follow up with those patients to make it clear to them we're not going to give you what you're asking for, but we're not abandoning you either. We're still here for you. So that's important to think about.

[00:27:19] The second thing I would just say is safeguards. Be a bit careful with safeguards. There's an understandable sense that the way to make this law safer is to pile them up, to pile on ever more safeguards and make it tighter. I think two things we've learned from New Zealand.

[00:27:32] One is if Parliament decides to go forward with this, then there's no point doing so if you're going to make it just inaccessible for the cohort who are meant to access it. But more importantly, if anything, there's a sense that some safeguards may actually have had the effect of making it less safe.

[00:27:47] For example, any safeguard that has a stifling effect or a chilling effect on the conversations healthcare providers can have with patients, I think can be a bit risky. New Zealand at the moment still has a rule that says the healthcare provider cannot initiate the conversation about assisted dying. I know that's been suggested as an amendment to the bill in England and Wales as well.

[00:28:07] The review has suggested, following their conversations with doctors, that that's making conversations very awkward. Doctors have said patients tend not to approach us and talk to us in statutory language. They use euphemisms and colloquialisms, and part of our job is to try and decipher what they're really asking us and what they really want, and to make sure they really know what's on offer.

[00:28:26] And any rule that kind of tries to prescribe the precise language in which that takes place can be tricky. So, I think that's one to be a little bit wary of, you know, that good safeguards are really, really important. But moresafeguards doesn't necessarily mean better safeguards.

[00:28:42] Ruth Fox: What happens now then, Colin?

[00:28:43] So we've got the review that's been done. What happens to that? Does that have to be considered by Parliament? Is the Government proposing new legislation or amendments to the legislation? What's the next step, do you think?

[00:28:55] Prof Colin Gavaghan: There's no suggestion at the moment from the Government that they want to amend the legislation at this stage.

[00:29:00] We do have this one Members Bill that I mentioned earlier that would change the eligibility criteria a bit by removing the six month requirement. But really the other suggestions that the review recommended, I don't think we've had a response from government yet. It was only in November, late November, that this was put forward and if you know anything about New Zealand it kind of goes into hibernation over a couple of months of the Summer so I'm not massively surprised that nothing's happened yet. But it'll be interesting to see what the response is from Government if they suggest picking up any of those recommendations either the statutory ones or the kind of resourcing type ones.

[00:29:30] Mark D'Arcy: Well that's a really interesting discussion of a assisted dying system that's already in operation. Colin Gavaghan thanks very much indeed for joining us on the pod today.

[00:29:38] Prof Colin Gavaghan: Thank you very much.

[00:29:42] Ruth Fox: So Mark, um, that was really interesting, but what did you take from it? I mean, I have to say, as the organisation for parliamentary democracy, I'm slightly nervous about referendums.

[00:29:50] Mark D'Arcy: Well, I suppose the point about the referendum they had on this bill was that there was a very detailed proposition on the table.

[00:29:57] The New Zealand public was not being asked to endorse a general principle and the Government would then go and fill out the blanks later. This was an absolute

[00:30:04] Ruth Fox: Not the Brexit scenario.

[00:30:05] Mark D'Arcy: Well, not the Brexit scenario, no. I mean, the problem with Brexit was there were always 57 varieties of Brexit.

[00:30:10] There were plenty of different ideas of how Brexit would work, and no specific one was on the ballot paper. This is something quite different. As Colin was saying in that interview, it was take or leave this piece of legislation, with these provisions. So the New Zealand public knew exactly what they were getting and chose to endorse it.

[00:30:26] And as he also pointed out, rather interestingly, another referendum going on at the same time about cannabis legalisation went the other way. The public rejected that one, so there wasn't some sort of great spasm of, you know, defiance of the established political elite or anything like that. The whole issue seems to have been weighed on its merits, which is what you'd hope a referendum would do.

[00:30:46] Ruth Fox: Yeah. It's also interesting that this was also done through a Private Members Bill. Although, I mean, we'll need to look into that process a bit more, but clearly there was more early stage consultation upstream, that there was more support for the bill as it was going through. And obviously then there was the post legislative engagement through a referendum.

[00:31:02] Mark D'Arcy: Yeah, and so they had a completely different process to the way this one has unfolded. I half find myself wondering whether some bright spark at Report Stage will offer a referendum amendment to see if this should be put to the British public. You never know.

[00:31:16] But, uh, above all I was very interested in Colin's account of who was applying for assisted dying, who was getting rejected and particularly the almost unaddressed point of what does participating in this process as a doctor and a medical practitioner do to you, what's the psychological effects of that?

[00:31:32] Because I do think that just as people will get burnout from working in hospices and other areas, you know, this is something that will have profound psychological effects on those involved in the process, as well as those who are the subjects of it.

[00:31:45] Ruth Fox: Yeah. Well, I think if this Bill does get Royal Assent, it does become law, we'll have a not dissimilar process here because there is a clause in the bill for a formal review, a statutory requirement.

[00:31:57] So clause 35 has it that there would be a review after five years of operation. They do the review and then the government would have to lay a report before Parliament. There are some amendments down to, for example, address that in the context of implementation in Wales. There's some amendments to try and put a little bit more detail on the face of the bill about what the review should have to specifically look at, but fundamentally that five year period is there on the face of the bill.

[00:32:22] Mark D'Arcy: It wouldn't surprise me, frankly, though, if the Health Select Committee got involved and took an earlier look at how the process was panning out, especially if there started being headlines about things going wrong in the press or something like that, so it would be something I think Parliament could easily decide it didn't have to wait five years before looking at again.

[00:32:39] Ruth Fox: Yeah, we may even see later on, as you say, at Report Stage, for example, attempts to try and reduce that. I mean, post legislative scrutiny, the sort of provision generally is that the, an Act will be reviewed three to five years after Royal Assent. Now, we know that that's not done universally, but you have to think that this is the kind of situation where, you know, they would want to definitely bring forward the review, even if it wasn't on the face of the Bill.

[00:33:01] I think you'd find committees better prepared. pressing for that. This five years is at the outer edge of the normal review period.

[00:33:07] Mark D'Arcy: And you've got to say that post legislative scrutiny is not something that Westminster does especially well by and large. Perhaps it needs a much more effective system for doing that, but that's a whole other podcast.

[00:33:18] Ruth Fox: Yes, well the House of Lords does it, as ever, the House of Lords does it better than the House of Commons. A running theme of this podcast as well.

[00:33:25] Well, Mark, I think that's all we've got time for this week. We'll see what happens in the course of the coming days.

[00:33:31] Mark D'Arcy: We'll see especially what happens with that Clause 12 and that critical vote on who gets to oversee the whole process.

[00:33:37] So back with that, I hope, next week. See you then.

[00:33:42] Speaker: Parliament Matters is produced by the Hansard Society and supported by the Joseph Rowntree Charitable Trust. For more information, visit hansardsociety.org.uk/PM or find us on social media @HansardSociety.