Terminally Ill Adults (End of Life) Bill
House of Lords · Lords Chamber · 20 Mar 2026 · 301 speeches · Official Report
Committee (12th Day)
Scottish legislative consent correspondence published, Northern Ireland legislative consent sought , Welsh legislative consent granted. Relevant documents: 32 nd , 36th and 49th Reports from the Delegated Powers Committee, 12th Report from the Constitution Committee, Report from the Terminally Ill Adults (End of Life) Bill Committee.
Clause 5: Preliminary discussions with registered medical practitioners
Amendment 165
Moved by
165: Clause 5, page 3, line 11, leave out “or Wales”
My Lords, in this group I have tabled 28 amendments and signed another one. Most of them are connected to the fact that I do not believe the Bill should apply to Wales. We had something of a debate on the first day in Committee, but I was conscious at that point that we did not want to spend the entire first day debating Wales and that we would come back to the legal importance of aspects of this Bill in regard to that. I will of course not speak to every single amendment because a lot of them are just on that theme, but it is an important theme. I am conscious that, since we debated, the Welsh Senedd has voted for the legislative consent Motion. I remind the Committee that at no point was the Welsh Senedd invited to vote on the principle of legislating for assisted dying, because a change in criminal law would not be within its purview. However, in this group, with amendments tabled by other Peers, there is an opportunity for us to consider-
It was asked to vote on the principle of whether this should be dealt with by the Welsh Senedd, because one of the amendments to the Motion for legislative consent was that it believes that “Wales should have full powers to choose to legislate or not regarding the legality and implementation of assisted dying services, as is the case in Scotland”. That was beaten by 25 to 13.
The Welsh Senedd’s legislative consent Motion was not about whether it could accept or reject the Bill. People perceived a threat, although I appreciate that this is not what Kim Leadbeater or the noble and learned Lord will have suggested. This perceived threat, explicitly put in a letter by the sponsors of the Bill, was that if the Welsh Senedd rejected the legislative consent Motion, various clauses-particularly Clause 42-would be removed from the Bill, which would effectively remove any involvement of the Welsh Senedd in how the Bill would be put into effect in Wales. Even then, the Welsh Health Minister voted against that, as did the First Minister of Wales, and they continued to say they felt the Bill was unsafe. I do not want to get into a rehearsal or a repeat of what happened in the Welsh Senedd-but it did vote. Interestingly, the Government have to deal with another issue where the Welsh Senedd voted down a legislative consent Motion on the Crime and Policing Bill, but that is not a debate for today. Here we are into an important part of the Bill, where the UK Government can override any decisions made by the Welsh Government and the Welsh Senedd. That is particularly singled out in aspects of Clause 42. I have co-signed Amendment 764 tabled by the noble Baroness, Lady Finlay of Llandaff, which seeks to address that by removing certain powers in that regard so that the UK Government cannot determine what happens in Wales. Since the introduction of the Bill a very...
In Committee in the Commons, one amendment that Kim Leadbeater opposed in a Division actually got through. It would effectively give power to the Senedd to make the decision about whether this could start in Wales. Amendments 903 and 905 are a sensible way of making sure that principle comes back, because on Report in the Commons the original amendment was overturned. I indicate my support for the Welsh Government taking control, if the Bill goes through, and for allowing the Senedd to vote on the regulations and have control over whether this applies.
Clause 42(3) states:
“The Secretary of State may by regulations make provision about voluntary assisted dying services in Wales”.
I strongly believe that this breaks the Sewel convention. This is one area where I genuinely hope the Government can give us a proper answer to a question about what they think, putting aside all the prevarication, and in what way they have provided advice to the sponsors of the Bill about whether the Government believe this is the right or wrong thing to do, in terms of breaking the Sewel convention. I assume by the very fact that this is in the Bill-
My Lords-
Let me just finish my sentence, then of course I will come back to the noble and learned Lord. So far, the UK Government have refused to share any correspondence or to say which of these clauses should be devolved or which should come under a legislative consent Motion. That is why it has been rather unsatisfactory.
The noble Baroness is saying it is a breach of the Sewel convention. The Sewel convention is that if you legislate in a different legislature from that which would be normal-the Senedd, in this case-you need the consent of the Senedd. The Senedd gave its consent in the legislative consent Motion, so perhaps the noble Baroness could explain why it is a breach of the Sewel convention.
It is a breach because I believe a threat was made to Welsh Senedd Members that if they did not vote for the legislative consent Motion, the entire removal of Clause 42 would be put forward in an amendment by the sponsor of the Bill. That is in a letter that was sent by the sponsors of the Bill to the First Minister, then shared with the Senedd Members. I appreciate that the noble and learned Lord may not think it was a threat, but I am suggesting to him that it was perceived as a threat, which then affected the decision of several Senedd Members.
I am totally confused by this speech. The complaint being made by the noble Baroness is that this should be dealt with by Wales. We took the view that if the legislative consent Motion did not go through-that is, the Senedd did not consent to it being dealt with here-it would be dealt with by Wales. The noble Baroness is now complaining that we are complying with the rules of devolution and legislating here, as the Senedd has agreed.
I am conscious that we have probably exchanged views enough. There is a clear breach of the Sewel convention. It is not usual for the UK Parliament to vote on such matters. I do not want to get into further exchanges, but I have spoken to Senedd Members and they believe-I do not want to use an inflammatory word-there was a perceived threat of this being imposed without their say. That is also why, as I repeat, the Health Secretary for Wales and the First Minister of Wales both voted against the legislative consent Motion. That, to me, is extraordinary in itself. I will not go into all the details on that, but it needs to be considered carefully as we continue to debate this group. As I say, we covered a lot of these issues on day one, so it is not my intention to extend debate. It is useful to switch to other noble Lords who have tabled, in particular, amendments regarding the Government of Wales Act. I am grateful to those Peers who have signed some of my amendments in terms of the shift of power to the Welsh Senedd on this. I beg to move.
My Lords, I shall speak to my Amendments 844, 903 and 905 in this group, but I first turn the Committee’s attention to the LCM debate, as the noble Baroness, Lady Coffey, just did, that took place in the Senedd on 24 February. At the beginning of the debate, Jeremy Miles, the Cabinet Secretary for Health and Social Care, set out to the Senedd: “I … wish to be clear about what may happen if the Senedd were to withhold consent today. The sponsors of the Bill have confirmed that, in those circumstances, they would seek to remove clause 42 from the Bill. That would mean the law in England and Wales would change to permit assisted dying, but there would be no powers in the Bill for Welsh Ministers to implement assisted dying services in Wales or to oversee or regulate such services”. That clarification is important for the Committee. Throughout the debate, many MSs stated dissatisfaction with how the Senedd was being treated. I apologise, but I will quote several MSs today because I think it is important that they are heard here. One said: “We are being asked to vote in the dark”, and another “we’re … being asked to sign a blank cheque”. Another said “we are … legislating with a blindfold over our eyes … This is no way to treat a Parliament. This is no way to treat a nation”. The Senedd was put in an impossible situation by this Parliament. A vote against this LCM would result in assisted dying services being available only privately, and a vote in favour at least retains some...
The reason that the Senedd was voting in the dark was that this Bill had not reached its conclusion in the House of Lords. If it had done so, the Senedd would have been legislating in the daylight.
I thank the noble Baroness for her intervention. However, that is not the case in terms of the practical reason why the Senedd Members raised those points; it is also in relation to the fact that they passed an amendment to this LCM, which I was lately going to touch on, which states that the Senedd “regrets” that this Parliament has not properly considered the “constitutional implications of this Bill for Wales”. It is important to note that, yes, they passed the LCM, but they amended it with a point about this Parliament not having done its duty and gone through the implications for Wales in detail. A lot of those in Wales who support the Bill just do not feel that they have had an opportunity to shape this Bill. I thank the noble Baroness for her intervention, and I hope that that clarifies my point a little further. The point was concisely put by Adam Price during that debate: “Supporters of assisted dying do not argue for access determined by wealth. Opponents do not argue for a system outside NHS governance in a matter as grave as this … No country’s Parliament should have to stand aside while another decides the terms on which its own citizens live and die”. He went on to say that he sincerely hoped that the vote was the last time that the Senedd-and other devolved Parliaments-was put in that situation. The Senedd passed the LCM with an amendment stating, as I just mentioned, that the Senedd: “Regrets the lack of thorough consideration of the constitutional...
My Lords, I thank the noble Baroness, Lady Smith of Llanfaes; that was a tour de force. Goodness knows, we rarely agree, and I am hardly a Plaid supporter, but I am from Wales. I want to reflect on couple of tiny things that she said in why I wanted to speak. Family and friends in Wales were completely confused about what the vote meant when it happened. They asked, “Have we just voted for assisted dying?” It was not clear, the way it came across. They were not sure what was being voted on. In a way, they were not alone, because when I talk to people, I also feel very uncomfortable that the Senedd was basically asked to vote on a blank cheque, as was said, because Members of the Senedd did not, do not and could not yet know what the Bill will look like. You can blame us here for that-we have not got very far-but the truth is that it seems presumptive for the Senedd to be asked to give consent in advance when we do not yet know whether amendments will get through this place and how they will change the Bill. By the way, that includes amendments by the noble and learned Lord, Lord Falconer, the Bill’s sponsor.
It also seems disrespectful to this House, and to the process, to treat the Bill as finished and as a given in relation to the Senedd. As I say, family and friends said to me, “What did we just vote for? Have you passed the Bill?” It was very difficult to explain, “No, we haven’t passed the Bill, but you were voting that, regardless of what Bill we pass, you are giving consent”. It did not feel like the kind of consent that I have much faith in.
I think it would be wrong to see this as for or against assisted dying. I was struck by the explanation from James Evans MS, who is a supporter of assisted dying. He explained that
“the question before us today is not whether I support the principle-I do support the principles of assisted dying-the question is whether it’s right to grant legislative consent to legislation that’s still evolving, still subject to amendment, and still under delayed scrutiny elsewhere”.
It is important to recognise that the disquiet is not about assisted dying but about the process.
Finally, I know that the sponsors of the Bill are very hot on democratic decision-making in elected Houses. I therefore think it was very odd that this presumptive consent Motion was given when there actually was a principled vote-on the principle of assisted dying-not that long ago in an elected House, which that consent Motion appeared to undermine. The Welsh Senedd, such as it is, voted against assisted dying on principle. I am not saying that that should stand, but why do we here in this House think we can wander along with a consent Motion for a Bill that has not yet been decided and say, “Oh, forget your principles; you’ve got to sign up to this consent or else”? That is bad form.
My Lords, I am most grateful to the noble Baroness, Lady Smith of Llanfaes, for her excellent tour de force on the constitutional issues facing the Senedd in the face of Westminster, particularly as we move into elections. I will make a few background comments, much more from my own professional angle in Wales. We must not forget that there is a long history of health and social inequality in areas of Wales, with rurality creating many problems. My colleagues in palliative medicine across palliative care in Wales have described end-of-life care in Wales as being at breaking point, because the demands of the terminally ill Bill risk drawing away funding from a sector that sorely needs it. We have seen bed closures in Wales, which have been quite tragic. There simply do not seem to be the resources to deliver assisted suicide in Wales. The Welsh Cabinet Secretary for Health and Social Care, Jeremy Miles MS, has admitted that ensuring the availability of Welsh-speaking staff would be challenging, but people find it much more difficult to communicate in a language that is not their first language, and it is much harder to ensure understanding, detect coercion and detect difficulties unless you can communicate in your own language. I know we are coming on to interpreters later, but I remind the Committee that Welsh and English have equal standing in Wales. It is unfortunate that the amendment in the other place was removed because, actually, the Government’s impact assessment...
My Lords, it is a great pleasure to see the noble and learned Baroness, Lady Prentis of Banbury, back in her place. She has been very much missed, and I hope this is the first stage on the road to full recovery. She, like me, may have a feeling of Groundhog Day because we have made lamentably slow progress on the Bill since she was last with us. We are on day 12 in Committee and we are still on Clause 5 of 59. As the noble Baroness, Lady Coffey, mentioned, she began our Committee proceedings on 14 November when she moved the first of her 111 amendments in relation to Wales, and here we are again. I say simply to the Committee that of course the Bill should apply to Wales. The Bill seeks to create an exception to the prohibition on assisted suicide and that is an aspect of the criminal law of England and Wales. We all agree that criminal justice is a matter reserved to Westminster. It would be bizarre were this House or Parliament to approve the Bill but not approve it in relation to Wales. There is simply no sensible reason why people living in Wales should be denied the same options as people living across the border in England. I listened carefully to what the noble Baroness, Lady Smith, said, and she suggested that there has been some parliamentary mischief, and that the people of Wales have not been listened to. But it is the case that the people of Wales have a number of representatives in the House of Commons. My understanding is that they all voted for the Bill.
Most of the amendments in this group relate to Wales, but some of them also relate to Scotland. Notwithstanding the noble Lord’s sensation of Groundhog Day, there has been an important development since we met last Friday, which is that the Scottish Parliament, by a decisive majority of 69 to 57, has chosen against assisted dying. In that context, therefore, a number of the provisions in the Bill need a significant rethink; in particular, references to Scotland in Clause 57(2) and (3), which would extend the provisions to Scotland, surely should no longer apply.
I thank the noble Lord for giving way. There is a substantial difference between the Bill that was not accepted in Scotland and the Bill that we are debating now. The Bill that was debated in Scotland had fewer safeguards; it is not the same Bill and therefore the noble Lord’s premise is not quite as he said.
The noble Baroness brings me neatly on to the second point I was going to make, which is that the lack of safeguards in Scotland precisely demonstrates the constitutional and practical difficulty of trying to legislate in Scotland while a number of those key safeguards are reserved matters to Westminster. Part of the reason the Royal College of Psychiatrists and the pharmacists came out decisively this week against the Scottish Bill was because it was not able to include enforceable conscience protections for health professionals that would, for example, have enabled them to refuse an instruction from their employer to participate in assisted dying. Instead, the mechanism that was forced, as it were, on the Scottish legislation was a Section 104 order, which would be subject to a future Westminster Government changing their mind. The Scottish Parliament was being asked to legislate for assisted dying, absent any Scottish safeguards for conscience and dependent on the future decisions of a Westminster Parliament. The noble Baroness neatly illustrates the point that there is a fundamental problem when one part of the United Kingdom seeks to go its own way. It is incapable of getting the necessary protections and that is one of the reasons why the measure was defeated. Amendment 887 in this group, which would withdraw the reference to Scotland from some of the measures, clearly makes sense given that the Scottish Parliament has just decided that it will not go down this path.
The three reasons why it extends to Scotland are so that people cannot advertise in Scotland to England and Wales, so that people in England and Wales get proper protections if they want to use the conscience clause, and so that substances are dealt with by the United Kingdom. That is why Scotland is included. Is the noble Lord saying that he wants those removed if the Bill goes through?
Can the noble and learned Lord elaborate on his second reason?
The second reason is that if, for example, you want the protection of employment law, that employment law which extends to the whole of the United Kingdom should protect you in Scotland as much as in England. You should never be prejudiced. That is why it is included.
Is the noble and learned Lord suggesting that Scottish health professionals will be travelling south to undertake assisted dying? Is it a sort of Berwick-upon-Tweed provision?
If you are an English person who has been prejudiced because you say, “I don’t want to be involved”, you should not be prejudiced anywhere in the United Kingdom.
It is not so much a matter of prejudice because, as I understand it, this provision was inserted in the House of Commons in the anticipation that the Scottish Parliament was going to have before it a Bill on assisted suicide, which it would at that point have passed. This was trying to do a belt and braces on a Section 104 order which everybody could see was likely to be deficient.
No, that is not right. The reference to Scotland was included to provide protection for people in England and Wales who, under employment law, wanted to exercise the conscience clause. If I am right about that, I am sure the noble Lord would not wish it removed.
I would be interested to come back to that on Report when we have had a chance to investigate that point further. Fundamentally, this shows that there is a great problem, a structural problem, in trying to do these types of big social changes through Private Members’ Bills, be they in Scotland or England. The reason for that is that it requires concurrent action by the Governments of both nations. We have seen time and again that when these sorts of questions have arisen and we have posed these questions, we have been told by the Front Bench, for reasons we all understand, that amendments to try to deal with these problems pose workability concerns. Then we ask, “How would you address those workability concerns?” and answer comes there none, because the Government are officially neutral on the question. Dealing with these sorts of questions cannot be left to Private Members’ Bills when you cannot get to the bottom of the workability concerns or deal with the fact that, in order for the narrowly drawn legislation to work, there are a whole set of other things that have to be in place that only the Government can provide. I conclude on that point by noting that this past week we have seen a report from the House of Commons Public Accounts Committee, once again on hospice and palliative care. It says: “There is an urgent need for reform to address the financial challenges that the independent adult hospice sector faces … The Department’s solution-the Modern Service Framework-is...
My Lords, as a Welsh-speaking Welshman, who has, in this House, consistently supported Plaid’s perfectly right demand that there should be fairer funding for Wales-I am not a Plaid supporter, but I support that aspect-I hope that the House will have listened carefully to the fundamental comments made by the noble Baroness, Lady Smith. If the Bill is passed, the Welsh Government will have to make arrangements for its implementation in Wales. In Wales, the provision of palliative care is not as good as it ought to be-this is widely understood. Yet we would be imposing on the Welsh Government the necessity to make particular decisions about health in Wales, when they have no powers to make those decisions for themselves. That is a very simple issue, and I recognise the problems stated by the noble and learned Lord. But the truth is that we have an underfunded Welsh Government who spend half their money on health and know that there are real gaps in the provision. Last week, the noble Baroness, Lady Murphy, told us that assisted suicide was part of palliative care. That, of course, has solved the case-we now know that it is just part of palliative care. But those of us who do not think that it is part of palliative care recognise that, in Wales, the issue is sharper than anywhere else because of the lack of funding, which is about the misuse of the way that funding from the centre is put out. I beg this House to take very seriously what the noble Baroness, Lady Smith, has said....
Would my noble friend, who as ever makes passionate and eloquent interventions, first accept that point about the need for additional resources for palliative care across both England and Wales has been made repeatedly through these debates? I think the Committee does not need to hear more about the need for additional resources for palliative care in Wales or anywhere else. That is entirely clear. The other point that I wonder if my noble friend would accept is that the need for a Bill on assisted dying-the desire for one-is as popular in Wales as it is in the rest of the United Kingdom. To make arguments, therefore, about imposing something on the Welsh people or on the Welsh Senedd, as other noble Lords have made, seems to be wholly inappropriate. The Welsh people have clearly expressed a view that they would like to see legislative provision for assisted dying.
First, it is said on both sides that they want more money for palliative care, but we now know that palliative care includes assisted dying. I therefore do not accept that the demand for more money for palliative care from those in favour of this Bill is the same thing as those of us who are asking for more money for palliative care so there is a proper choice. Secondly, the issue is not whether the people of Wales should make the decision on the issue of assisted suicide; the issue is whether decisions made on that subject-which have to be made, because the noble Lord is perfectly right that the legal issue is not devolved-should be made in circumstances in which the application and implementation of those decisions are excluded from the powers that the Welsh Government have. All we are saying here is that those are two different things. I accept entirely what the noble Lord said about the need to make a national decision because of criminal law. However, I am saying that the sponsors of this Bill have got to face that it will ask the Welsh to give up the important control they have in circumstances in which they are already impoverished by the way in which they are supported and where they have particular difficulties with what we call palliative care-not that which the noble Baroness, Lady Murphy, calls palliative care.
My Lords-
I knew I would do that. I am sorry. I will not refer to the noble Baroness, Lady Murphy.
My Lords, could I make it clear to noble Lords that, in the best legislatures that have implemented similar legislation to this one-and I am thinking of Oregon, the State of Washington and so on-assisted dying is a small part, a very tiny part, of a good palliative care service, and it is best delivered when people who have been caring for somebody through the course of their terminal illness are enabled to make that final choice in their own time when they are ready. That is the point I was making then, and which holds today. I did not say that it was part of palliative care here. It certainly is not at the moment; I would like it to be, but it is not. The only other point I would like to make is that we have been referring throughout this debate to the Scottish vote. Is it not lovely that the Scots could make a vote? We will not have the opportunity to make a vote in this House due to people going on and on about Wales and matters we have already discussed many times and have already had explained to us. It seems to me that we are just wasting time and we will never get to a vote. I realise that is what some in the House would like, but it is sadly the case that we will never get to the point where we can make a decision in this House about whether we support this legislation or not.
I am pleased that I gave time for the noble Baroness to talk, given that she thinks all of this is nitpicking. I remind the House that is what she said about the work we are doing. The fact is-
I am in a total muddle about what the noble Lord, Lord Deben, is saying. I think he is trying to say that Wales should decide on implementation. The Bill says: “The Welsh Ministers may by regulations make provision about voluntary assisted dying services in Wales”. We are giving the Welsh Ministers that power. Could the noble Lord make it clear that he supports that provision?
What I am saying is very simple: the proposers of this Bill have not properly taken into account the particularities that the Welsh have put forward so nobly and well by the noble Baroness, Lady Smith. I never hear from the proposers of this Bill any comprehension or understanding that some other people might have contributions to make. That is why we have had no meaningful changes to this Bill. It is a Bill which is opposed either in principle or in practice by everybody who is supposed to carry it through, and it has now caused real trouble in Wales. I am merely asking the proposers of the Bill to give this House some belief that they really are listening and are not treating our conversations as nitpicking.
My Lords, I would like to point out that my noble and learned friend Lord Falconer has in fact tabled amendments and they have not yet been debated because we have not reached them in the Marshalled List. With regard to the very interesting and important discussion about Wales, many of the facts which were quite properly given by the noble Baroness, Lady Smith, are related to the devolution settlement itself. That is, quite frankly, a much wider issue than that which we are debating today.
My Lords, as a former member of another place who represented 2,900 square miles of Wales, I have the feeling that we are getting into a horrible conceptual muddle in this debate. I feel the phrase “horses and carts” applies to several sentences around what is being debated here. I was one of the advocates of devolution when I was a Welsh Member of the other place and supported it very strongly when it came about, and I absolutely recognise the points that have been made so ably by the noble Baroness, Lady Smith. However, after hearing earlier parts of this debate, what I am hearing is that actually the money side of this is not the horse; it is part of the cart. We have heard Ministers, including my noble kinswoman by the way, repeatedly saying in response to amendments in this debate that this House and this Parliament decide whether we pass this Bill. If the Bill is passed, the Government will have to provide the resources to enable it to work. I apprehend that, if this Bill is passed, if it is given enough time to reach the end of its parliamentary stages, which I think it should be allowed-though I do not support the Bill in principle, by the way-then the money would have to come from somewhere and the adjustment would be made to enable Wales to provide the services required.
To go back to my 2,900 square miles of Wales, the old county of Montgomeryshire, which is now part of Powys and part of a bigger constituency, has no acute hospital. It has a number of cottage hospitals, as they used to be called-local hospitals-and very good they are too. On the whole, the local medical services are excellent, but there is no acute hospital. When people used to go to their GP-surprisingly, most people in rural Wales are on first-name terms with their GP when they meet them in the street-the GP would ensure that they had the best possible advice, including advice on palliative care, but most of that advice would come from hospitals in England. The need for uniformity in the provision of services is essential, but that uniformity will be provided not by the conceptual principle behind the Bill but by the way in which it is put into effect.
Let us go back to the conceptual principle behind the Bill. I agree with my noble friend Lord Pannick that this is not a health Bill or a Bill about the provision of palliative services. It is a Bill about allowing a citizen to help another citizen to die. This is about life and death, and it is about the law. I, too, am delighted to see the noble and learned Baroness, Lady Prentis, back in the House, because she is a very fine lawyer and has been a Law Officer. She and my noble friend Lord Pannick know-and I happen to know, because I am a lawyer and was a Welsh MP-that if a citizen today helps another citizen to die, the decision that would be made would depend on a change in the criminal law of the United Kingdom, which is a reserved matter.
I suggest to your Lordships that we should get on with deciding whether or not this Bill should be passed. As I have said, I am not in favour of this Bill, but let us get on with the parliamentary procedures that are placed upon us. If the Bill is passed, adjustments may have to be made to enable Wales to have the funding, which would be administered by the Government in Cardiff.
My Lords, it is good to see the noble Baroness, Lady Prentis, back in her place, and I am sure the whole Committee welcomes her back. Unlike the noble Lord, Lord Carlile, I cannot claim to have a background in representing Wales-the closest I have been is on a few childhood holidays-but I have experience in one of the three main devolved Parliaments in the United Kingdom. We have a unique constitutional settlement in the United Kingdom, part of which is the slight irregularity and rough edges so that in Northern Ireland, Scotland and Wales devolution does not happen in exactly the same format. I find myself in complete agreement with the noble Baroness, Lady Smith, who made an excellent speech. I do not know whether she should be more worried that I agree with her or I should be more worried that I find myself in full agreement. The reality is that her speech clearly indicates that the amendments in this group, which are worthy of support, go to the heart of important issues relating to the constitutional settlement that we have in the United Kingdom. They are worthy of support, regardless of whether you are the strongest supporter of this Bill and the principle behind it or you are the most fervent opponent. It is important that the will of the Parliaments of Northern Ireland, Scotland and Wales is fully respected. On occasion, there is a danger that the Parliament in Westminster shows a bit of a tin ear to the desires of the Parliaments in the devolved nations. As has been...
My Lords, I want to touch on a number of points. First, I join the noble Lord, Lord Pannick, in welcoming my noble and learned friend Lady Prentis back to these Benches. I do not think she will mind my saying that she has been following our debates assiduously from home-she cannot get enough of them. It is a delight to see her come back to hear them in person. The noble Lord, Lord Pannick, put his finger on one of the issues by asking what reason there could be for us not legislating for Wales. Well, the rather obvious reason was set out clearly by the noble Baroness, Lady Smith of Llanfaes: the Welsh Senedd has debated the principle of assisted suicide and has decided that it does not want it to apply in Wales. I think we should respect that.
I want to clarify that that is not what I said in relation to the debate on the principle. That was a separate debate, and I do not think that it is necessarily relevant to the discussion, given that the LCM has been voted on.
I recognise the noble Baroness’s view, but the noble Lord, Lord Pannick, asked why we should not just go ahead and legislate for Wales. The point is that the Welsh Senedd has debated this matter, which is a perfectly good reason for us not to proceed without its consent. I will come on to some of the amendments tabled by the noble Baroness in a moment.
The Senedd has given its consent -that is what the noble Lord seems to be ignoring. Why should this Parliament not proceed to deal with what we all agree is a reserved matter?
This is the heart of the problem, which was highlighted brilliantly by the noble Lord, Lord Stevens. This issue touches on a reserved matter-the noble Lord is absolutely right that the proposed change to the criminal law is reserved-but delivering the services, if done through the health service, would not be a reserved matter. The Welsh Senedd debated the principle of the issue and decided that it did not want to have assisted suicide in Wales. When it was faced with the issue the other week in relation to the LCM, what it was being told, as I understand it, was that, if it did not consent to this Bill, and if Clause 42 were removed, it would not have the power to legislate on the delivery of the services. However, this Parliament would still proceed to change the criminal law in Wales, thus allowing people to assist other people to take their own lives, but without the Welsh Government or the Senedd having the ability to legislate for those healthcare services. That, I think, is the position and what it found unsatisfactory.
What the Senedd decided was that it would consent to Welsh Ministers being given power, in effect, to legislate on how to introduce it-that is Clause 42. The effect of the LCM is for the Senedd to say-to the extent that it should be a matter for the Senedd to decide on-that it is content that Westminster should deal with it. If the position is that the Senedd should in fact deal with it, then the Senedd could have retained that power. However, it decided, very sensibly, that if the Bill is going through, it should have powers concurrent with that and get them from the same Bill, because then there is no doubt about what the Welsh Ministers have to do.
Yes, but the problem is that the noble and learned Lord has just confirmed, I think, that whatever the Welsh Senedd said, his intention was that this Parliament would have legislated to change the criminal law in Wales because it is reserved-and that does not give any democratic say to the Welsh Senedd. That is because of the way the devolution settlement has been established, and, as the noble Lord, Lord Stevens, said, that is unsatisfactory. That is why this issue would be better legislated for in a Bill dealt with by the Government that covered all aspects of it: both the change to the criminal law and the way the necessary services would be delivered in the whole of the United Kingdom, rather than just in England.
We are not going to change the devolution settlement in this Bill-of course we are not. That is not the issue and that is not what is before us. Instead, this comes back to the Government. I entirely agree with the speech from the noble Lord, Lord Carlile, but we are supposed to rely on the Government saying that, after we pass this, they will deal with the money. That is the problem. I do not believe them. They have to tell us what the money will be and where it will come from. They have to tell the Welsh that the money going to Wales will be increased proportionately so that Wales can deal with it. Until they do that, we cannot make proper decisions. I totally agree otherwise with what the noble Lord, Lord Carlile, said.
My Lords-
Hang on. The noble Lord has just intervened on me; I am still making my speech, and I need to deal with this. I agree with the point he made. Let me come on to the amendments from the noble Baroness, Lady Smith of Llanfaes. She has set out an alternative way of doing this, which retains the powers entirely with the Senedd, and there is a lot to be said for that. I will not say more about that now, because I made those points when we debated Wales in the first place. Instead, I have two further questions to ask. In my reading of Clause 42(3) and (4), the Secretary of State-at Westminster- “may by regulations make provision about voluntary … dying services”, including the Henry VIII power to amend primary legislation. Does that enable the Secretary of State-a Secretary of State at Westminster-to amend the legislation that set up the health service in Wales, the National Health Service (Wales) Act 2006, which sets out the foundational principles of the health service in Wales? If it does, it is exactly what the noble Lord, Lord Stevens, said the other week: it again means that this bit is a Trojan horse allowing the fundamental principles of the NHS to be changed in Wales, not by Welsh Ministers but by a Secretary of State at Westminster and, as my noble friend Lady Finlay said, without even having to consult Welsh Ministers. That is not acceptable in principle, and I would be grateful if the noble and learned Lord could confirm that. I will take one more brief intervention,...
Has the noble Lord noted that Clause 42(1) and (3) have identical wording? Both the Secretary of State and the Welsh Ministers “may by regulations make provision about voluntary assisted dying services in Wales”. Maybe there is a conundrum that needs to be resolved there.
I have noticed that. It limits their powers to what is within the legislative consent of the relative bodies. I am not clear about that fundamental point. My final point comes back to the issue about getting answers. On the first day of our debates, I raised a number of issues-which I will not repeat today-from my experience as a Member of Parliament for a constituency on the border. There are practical questions about how we deal with those cross-border issues and about who sets out the rules for people. Is it based on where they live, or on where their GP is based and who delivers their healthcare services? I asked some very specific questions and highlighted the real issues created by that, if we do not resolve them. We are now on day 12 in Committee, and I have not had any answers to any of those very specific and detailed questions that I asked on day one. It is for reasons like that-I say with respect to the noble Lord, Lord Pannick-that we are making such slow progress. We are asking questions but we are not getting answers.
I suggest to the noble Lord that, if we got to Report and if we did not take so long on these issues now, we would get answers, because that is the purpose of Report. I know very well why the noble Lord is reluctant for us to get to Report: because the result would be exactly what happened on Wednesday night, when we debated and decided on the decriminalisation of women who had late-term abortions. There would be lots of talk and passionate speeches, but, at the end of the day, the House would vote in favour of a compassionate approach to the issues.
I will be very brief in my response to that because of the time. That has nothing to do with this issue; this is a completely separate issue. Deciding on assisted suicide is not the same as allowing abortion to term without any legal consequences, which is an extreme provision supported by only 1% of the British public-but I accept that Parliament made a different decision. Those two issues are not connected in any way, so that issue is not relevant to this debate. We raise these issues-real concerns about how this would operate in practice-but we are still waiting to hear specific answers from the sponsor of the Bill. If we had answers earlier, we might make faster progress.
My Lords, I cannot let the noble Lord, Lord Pannick, get away with that. What happened on Wednesday night was a separate issue. As it happens, I argued for a change in the law in relation to decriminalising abortion-but now I am on this side. This sort of easy “swatting away”, “culture war”-style argument is unhelpful. People, in good faith, are concerned about the lack of safeguards in this Bill. I do not agree with the idea that no one wants to get to Report. I would much prefer to be voting on aspects of the Bill, because a wide range of the concerns that have been raised could be addressed through amendments tabled by the sponsor of the Bill so that we can get on with it. That is what I would want. The only reason we are discussing Wales, as far as I am concerned, is what has happened since we discussed it on the first day in relation to the Senedd’s decision. It is a perfectly appropriate thing to raise. The idea that we are wasting time talking about Wales-said by people who apparently respect devolution-seems a bit rich. We want to get to Report, and we should keep the insults out in order to do so.
My Lords, my Amendment 765, supported by the noble Lord, Lord Rooker, would delete Clause 42(4). I will briefly read the subsection, as it is not very long: “Regulations under subsection (3) may make any provision that … could be made by an Act of Parliament, and … would not be within the legislative competence of the Senedd if it were contained in an Act of the Senedd”. I will not repeat the case put by the noble Baroness, Lady Finlay, who quoted the report of the Delegated Powers Committee, on which I sit, which argued that the clause is highly inappropriate. Rather than do that, I will put to the sponsor of the Bill a simple question, and I would be grateful if he addressed it when he winds up. I quote from the report of the committee: “Delegated powers that can be used to do anything that an Act of Parliament can do are very rare, with the wording currently appearing in just two Acts: the European Union (Withdrawal) Act 2018 and the European Union (Future Relationship) Act 2020”. I was not on the committee when that report was produced, but my understanding is that the argument at the time was that the exigencies of Brexit required business to be done by regulation, rather than by an Act of Parliament. My question for the sponsor of the Bill is: what is the exigency in this case that requires the provision, which he believes needs to be made, to be made by regulation, which necessarily has to be dealt with on a “take it or leave it” basis, rather than by an Act of...
My Lords, regrettably, we are never going to get to Report. Members of the House keep referring to Report. My noble and learned friend, the sponsor of the Bill, has frequently said that he will come back to some of the questions that have been put by the noble Lord, Lord Harper, and others. Normally, that would happen on Report. Were there a more disciplined and focused approach to scrutinising the Bill by those who oppose it, we would have perhaps got to Report, but we have not. We have had a long debate about Wales, including all sorts of questions about the devolutionary arrangements, and I wonder whether we can now hear from the Front Bench.
Would the noble Baroness perhaps like to make it clear whether she believes that it is inappropriate for the sponsor of the Bill to reply to the question I have just put in Committee?
My Lords, I hope I will be permitted to say something about Wales. I was going to make a much longer speech but my friend, the noble Baroness, Lady Smith of Llanfaes, made an excellent argument on the merits of the issues relating to Wales. The short point to which I wish to draw attention is the issue in this case. Is it an issue about criminal law? This often arises in questions within a federal form of government, which in reality we have here: how do you characterise this issue? Does anyone really think this is about the criminal law? The criminal law is part of finding the solution, but it is a debate about a moral issue and how to use the resources of the NHS. The criminal law should not be seen as an impediment. I would have said a lot more about other things but, being accused of wasting time, I will not make that speech. I just draw attention to the problem that arose in 2016-17. Wales wanted to pursue its own policy in relation to what is old-fashionedly known as the chastisement of children. Of course, the chastisement of children is governed by the criminal law. As Wales wanted to do it at a time when there was a Conservative Government in London and a Labour Government in Wales, there was an intergovernmental discussion on how this issue should sensibly be dealt with. It was decided that an exception ought to be written into the Government of Wales Act and the very complicated schedules, permitting Wales to make its own decision. So it was excised from the...
My Lords, the inference from some comments during the course of this debate has been that somehow the issues raised in Wales and by the Senedd are peripheral to the centre of this legislation-not at all. The issues that have been raised by the debate are absolutely central to the legislation, as we have heard throughout the debate. The Bill seeks to change primarily the criminal law, and it goes into some specificity about that. But as has been pointed out very effectively by the noble Lords, Lord Stevens of Birmingham and Lord Goodman of Wycombe, and others, the Bill carries with it certain consequential and potentially hugely consequential changes to the National Health Service-changes that will be made by regulation and are not in the Bill. That is precisely the point that was at issue when the legislative consent Motion was debated in the Senedd. As my noble friend Lord Harper pointed out, when the Senedd voted on the broad principle of assisted dying-not this legislation but the broad principle-the Senedd was against it. When invited to vote on the legislative consent Motion, the Health Minister in Wales, Jeremy Miles MS, explained to the Members of the Senedd that a legislative consent Motion would be necessary because in the absence of a legislative consent Motion, as he understood it, it would be criminally possible to assist someone in dying, but he would not be able to provide the appropriate detail about whether the NHS would be responsible for that service. The...
We should realise that this legislation, as the Senedd has quite rightly pointed out, is not simply about criminal law, which is understandably, and I believe rightly, reserved to this place. It is about the future of the NHS. It is about resourcing, as my noble friend Lord Deben has pointed out, and it is about the constitution of the NHS, as the noble Lord, Lord Stevens of Birmingham, pointed out. Those issues were raised by me and others briefly at the beginning of consideration of this legislation. They have not subsequently been addressed, and I fear that they cannot be addressed unless and until this is a government Bill.
I will just ask this question. I am genuinely a very simple doctor, and I do not really understand this problem. It is clearly a problem in ways that I think are humanitarian. At the moment in the House of Lords, we are discussing complex issues regarding precision medicine, which involves the use and manipulation of genetics, some of which will certainly require ethical considerations by this House. The issue is that clearly these advances in medicine cannot be denied to the people of all the United Kingdom because, although they might change healthcare in amazing ways, they will be far more expensive than assisted dying. How does that work? Perhaps the noble Lord could briefly explain to me why it seems wrong that we might be depriving the Welsh of something that is much wanted, simply because we cannot find the way through this on a legal basis.
I had concluded my remarks but I am grateful to the noble Lord for raising this point. Precision medicine, and the advances that it potentially holds for all of us, is a wonderful potential breakthrough, but changes not just to the legislation but to the regulations governing it will be brought forward by the Government. Any concerns that the devolved legislatures have about the operation of them will be addressed by government means-by the Cabinet Office or any other Minister who is responsible for intergovernmental relations. We had a situation in Wales where the Minister responsible was operating on the basis of assurances that he had been given by the sponsors of this Bill relating to Clause 42. It may well be that the sponsors can clarify what was meant; why it was that Jeremy Miles believed that if a legislative consent Motion had been denied, we would have legal assisted suicide-assisted dying-in Wales without the capacity of a Welsh Minister to determine the future of the NHS as they wished. Perhaps that can be cleared up. We cannot have a recurrence of that situation, where we are having to clear it up here, having already had the legislative consent Motion, and the relevant Minister having told other Members of the Senedd that the only reason they should back that Motion was because of the fear he had of the effective privatisation of killing in Wales. That is why we must have government legislation, rather than proceeding with a Private Member’s Bill, which is...
My Lords, I first take a moment to say from the Front Bench how wonderful it is to see my noble and learned friend Lady Prentis of Banbury-who was here a moment ago.
She left when the noble Lord started.
Causation is denied. My noble and learned friend can read it in Hansard , and I spoke to her outside. It is a testament to her dedication that she has been following this on TV. I do not know whether that shows how poor daytime TV normally is, though those of us who were here on Wednesday will remember that your Lordships’ House is very late night TV as well. I spoke on the amendments when we first touched on this topic in Committee, right at the beginning. As my noble friend Lady Coffey said, those amendments interrelate with what has been discussed today. The Front Bench is focused on the question of making sure that we do not end up with a situation where different citizens and residents in the United Kingdom have substantially different rights in areas as important as this. I listened carefully to what the noble Baroness, Lady Smith of Llanfaes, said about what actually happened in the Senedd. The phrase “voting in the dark” was a stark one, which I think we ought to remember. On the question of what the Bill actually does, I am reminded of when I studied private international law, where you have something called the characterisation question-something that lawyers often like. It basically goes like this: in order to get the answer you want, you rephrase the question to focus on the bit of the problem which you want to focus on. In this case, you ask the question, “What does this Bill do?” The noble Lords, Lord Pannick and Lord Carlile of Berriew, rightly say, as a...
My Lords, I am grateful for the views that have been expressed today. As usual, I will keep my remarks to those amendments that raise significant legal, technical or operational workability concerns. I very much associate myself from these Benches with the welcome to the noble and learned Baroness, Lady Prentis. We were delighted to see her return to your Lordships’ House and look forward to hearing from her. I turn first to the amendments tabled by the noble Baroness, Lady Coffey. Taken together, they would restrict eligibility for assisted dying to England only and exclude people resident in Wales, registered with a Welsh GP or who have recently moved across the border. They would remove the powers of Welsh Ministers to issue regulations and guidance and limit the commissioner’s monitoring functions to England. Individually and as a group, the amendments could have complex effects, risk significant unintended consequences and lead to a lack of clarity about eligibility and the effect of the law across the England-Wales border. Restricting the Bill to England, as we have heard, would also create a divergence in the criminal law of England and Wales. The protections in Clause 32 would not apply in Wales and the Suicide Act 1961 would continue to apply there as it does at present. It would therefore be an offence to take steps in Wales to assist access to an assisted death in England even where lawful under the Bill in England. That would represent a significant divergence in...
My Lords, may I question the Minister? The 49th report of the Delegated Powers and Regulatory Reform Committee drew attention to the very unusual nature of the clause in the Bill that allows the delegated powers to be used to do anything that an Act of Parliament can do and drew attention to the fact that this is extremely rare. Is the Minister saying that that is acceptable in this Private Member’s Bill and therefore potentially sets a major precedent in relation to other legislation? Can she clarify whether the Government, simply in relation to that, not to any other part, dispute the Delegated Powers and Regulatory Reform Committee’s conclusion?
I am sure that all noble Lords welcome that report and its comments but, as the noble Baroness is aware, it is a matter for the sponsor to decide the response to that rather than the Government.
What is His Majesty’s Government’s approach to the legislative consent Motion process and making sure that the Sewel convention is kept to? What intergovernmental discussions have this Government had with the Welsh Government on the constitutional implications of this Bill in particular?
As noble Lords will be aware, engaging with the devolved Governments is a matter for the sponsor, not the Government.
My Lords, we have heard talk in this debate about respecting the devolution settlement. No, we do not. It is not that long ago, for instance, that the Northern Ireland Assembly voted against abortion but got abortion, and everybody on both Front Benches voted for it. So let us not fool ourselves that we have this great commitment to devolution and respect the views of the relevant assemblies. No, we do not.
I note the comments that the noble Lord has made.
I express my personal pleasure at seeing the noble and learned Baroness, Lady Prentis, back in the House. She was an extremely successful Attorney-General because she was wise and knew the law. I am very glad that she is back here to keep us in order. On issues in relation to Wales, we have understood throughout the importance of complying scrupulously with the devolution settlement. The people of Wales have to be respected and the devolution settlement has to be respected. On two propositions here, there is no doubt. First, this is about the criminal law. If a Bill were passed in the Senedd that sought to change the Suicide Act under the existing devolution settlement, it would have no effect because it would not be within the Senedd’s power to do it. That has to be dealt with by this Parliament. Secondly, and separately, as a matter of practicality, how assisted dying is to be introduced in the health service and the provision of health in Wales is, in practice, a matter for Welsh Ministers. The approach that we have taken is that this Parliament must deal with the criminal law and Welsh Ministers must be left to deal with the decisions about how it is introduced. It may be that that requires an Act of the Senedd. Because of that possibility, we have included in the Bill the power for Welsh Ministers to give the National Health Service in Wales the power to take steps. That power would normally be given by the Senedd, but so that there could be no doubt about that, and so...
My Lords-
Could I just deal with this? The noble Lord can come back at the end. I shall deal first with the 28 amendments proposed by the noble Baroness, Lady Coffey, to remove references to Wales. They would mean that this Bill would not apply to Wales and the Welsh Senedd would not have the power to make a change. As the noble Baroness, Lady Smith, said, this would leave Wales completely in limbo. These amendments raise precisely the same principle that was raised in the first group of amendments that we debated in Committee. I am against these amendments. They do not respect the devolution settlement. The second group of amendments is, effectively, Amendment 844, which was very well introduced with clarity by the noble Baroness, Lady Smith. She, supported by the noble and learned Lord, Lord Thomas, is saying that we should change the devolution settlement so that criminal justice can be dealt with in Wales. I understand the point and the principled position from which it comes as far as the noble Baroness is concerned. Again, I am against that change. This is not the Bill in which to change the Welsh devolution settlement.
My Lords-
Let me finish. In my view, the right answer in relation to this is that we respect the devolution settlement, and it is for the United Kingdom Parliament to decide whether the law is changed in England and Wales. It is worth pointing out that 75% of Welsh MPs voted in favour of the Bill at Third Reading in the House of Commons.
I shall make two linked points. The noble and learned Lord set out clearly the decision that he and the sponsor of the Bill in the Commons made about how to implement it, which was for the Bill to change the criminal law for England and Wales. The alternative way, as set out in the amendment proposed by the noble Baroness, Lady Smith, is not to change the whole devolution settlement but to make a narrow change specifically for offences relating to suicide. When drafting the Bill, did the noble and learned Lord consider changing that aspect of the settlement and giving that power to change the criminal law as regards assisting suicide to the Welsh Senedd? If he did, why did he come up with his conclusion, given that it has this complexity about the constitutional settlement?
Our approach to this has been to respect the devolution settlement, which, for better or for worse, unquestionably leaves criminal justice to this Parliament, not to the Welsh Parliament. I thought that was the substance of the argument that I was making. We should not change the devolution settlement in this Bill. I respect and understand the argument that the noble Baroness, Lady Smith, and the noble and learned Lord, Lord Thomas, are making, but I do not accept it.
Will the noble and learned Lord clarify whether, if the Bill were to pass, the Welsh Government would be able to widen or limit eligibility for the service in Wales?
The Welsh Government would not be able to widen or reduce the eligibility of an individual for assisted dying. A person would not be in breach of the criminal law in Wales only if they complied with every aspect of the safeguards in the Bill. The Welsh Government’s role would not be to determine who qualifies for an assisted death. In the light of those provisions, it would be only how they introduce delivery of it in the Welsh health service. There were a large number of other interventions, particularly from the noble Lord, Lord Deben. It was completely unclear whether he is in favour of the Welsh health service having the ability to do that. Whatever his view, I make it absolutely clear that it is for the Welsh health service or Welsh Ministers to decide how it is introduced. It must be in accordance with the statute, but it is for them to decide, and that is why we have given them that power. I shall go on to the third category. This is not a Welsh Ministers issue, but a Secretary of State issue. The noble Baroness, Lady Finlay of Landaff, made the point that he should not have a Henry VIII power as wide as the one given. I see considerable force in what she said. She asked whether I have an answer that says that this is a parallel with the Brexit provisions, which is the only time that this has been done. I do not have an adequate answer in relation to that, so I should go back and think about how I can appropriately limit that power. However, I make it clear that that...
I am not sure that the noble Baroness, Lady Smith, got a complete answer to her very interesting question. I remind the Committee that she asked what the powers of the Welsh Ministers would be in this regard. Of course, the noble and learned Lord is obviously correct when he says that the Welsh Ministers could not say, for example, “If you have nine months to live, we are going to allow you to access the service”, because that would go beyond the scope of the Act and impinge on a criminal law issue, which is the purview of Westminster. What if they were to say, “We will only, as a matter of health service, allow you to access this if you have three months or less to live”? Would that be within their competence, with their health hat and not their criminal law hat on? I wonder whether that was the point behind the question asked by the noble Baroness, Lady Smith. I am not sure she got an answer to that point.
The health service could determine who it is going to make it available to free, but it could not prevent other people-for example, private providers-having different provisions in relation to it. The next category of amendments was in relation to removing Scotland. I gave an answer to the noble Lord, Lord Stevens, in relation to that in the course of the debate.
Perhaps the noble and learned Lord will clarify the answer he gave on Scotland. I think he is saying that even though the Scottish Parliament has decided that assisted dying should not be lawful in Scotland, a Scottish hospice could nevertheless not prevent its employees doing something that would be unlawful in Scotland if they travelled across the border to perform that act in England. Is that the consequence of what he is suggesting?
This was picked up by the noble Baroness, Lady Merron. She focused, rightly, on what would happen in the case of a doctor who lived in Scotland but worked in England. The question was: could they be prejudiced? The answer is no-employment law would apply, and employment law is right across the country. On what is not being done in relation to the Bill, it does not refer to Scotland, because in Scotland they are awaiting the Scottish Bill. It is entirely focused on the protection of people working in England. That is why it is there. It is also focused on advertising coming from Scotland into England. So it is not in any way dependent upon what might happen in Scotland.
Finally, the noble Lord, Lord Wolfson, asked whether I saw it as a success of devolution that there are different provisions in different parts of the United Kingdom. Well, that is the effect of devolution, and I make it absolutely clear that we respect the devolution settlement.
The noble Lord, Lord Harper, asked some questions in the first debate. The concern that I think he had in mind was that, if the health service in England delivers the service in a particular way but Welsh Ministers decide to deliver the service in a different way, with different checks and balances and different professionals delivering that service, it is not clear in the Bill whether someone who lives in England but is registered with a GP in Wales would be entitled to the English or the Welsh provisions.
That is most certainly not a matter to put into the Bill. That is a matter for the respective health services to decide how it is dealt with, and then for them to liaise with each other. Those were the questions he asked, and it is not really for me to answer them.
That is an answer, but a deeply unsatisfactory one. That is exactly what was done when this was set up in the first place. It led to years of disputes, and to constituents living in England being unable to access the health services to which they were legally entitled. They had to have services in Wales that were less good in respect of waiting times. That is a deeply unsatisfactory answer. The consequence will be a situation leading to lots of complicated workability issues on the ground; that is why I flagged it to both the noble and learned Lord and the Minister on day one. If it is not thought through, it will become a practical issue that will have to be resolved, and if it is going to be resolved, it would be better to resolve it now.
I have sympathy with what the noble Lord says. I do not think it is appropriate for that sort of issue to be resolved in a Bill such as this, and it goes far wider than assisted dying.
I thank the noble and learned Lord for giving way. I have one final question of clarity. If the Bill were to pass here, what would happen if the Welsh Ministers, whoever they may be, did not lay the regulations but the Senedd as a whole supported having those services delivered in Wales? What power would the Senedd have to be able to push for an assisted dying service if Welsh Ministers did not lay the regulations?
I have two points. First, we have made it clear in the Bill that there is no obligation on Welsh Ministers to lay the regulations. In England, they must lay the regulations. In Wales, they may do so; they have a discretion because we thought it appropriate that they should have that choice. If they do not exercise that power, my understanding is that it would be open to the Senedd to pass an Act saying that this has to be done. If no such Act were passed, or the Ministers did not decide to exercise their power under the regulation-making power in this Bill, the consequence would be that the National Health Service would not offer assisted dying in Wales.
I want to clarify absolutely what the noble and learned Lord the promoter of the Bill is saying. I believe he is saying that, if the Bill passes, we could have a situation where assisted dying is legal in Wales but the NHS does not provide any service-that is theoretically possible-it would be a private service that would be available to citizens in Wales but an NHS service that would be provided in England; there would be that distinct difference. I would just like clarity on that.
That is exactly right. That is why we have given the Welsh Ministers the power to do it. It is for them to decide, because it is not for either the UK Parliament or the Secretary of State here to determine it.
Again, for clarity, if it were the case that Welsh Ministers thought that NHS resources were better devoted to improving palliative care, for example, or to doing something else, if they said that they would not be providing any resources to support assisted dying, then it would be legal but unfunded. It would be a private service in Wales while it was an NHS service in England.
That is right.
My Lords, we have covered quite a range of issues. I had intended for this to be about the decision-making process. The noble Lord, Lord Pannick, referred to Groundhog Day; it has not been Groundhog Day as far as I am concerned. On the very first day, there was an opportunity for the Government to set out a bit more. People have talked about how it would have been better if this was a government Bill. Actually, if the Government had answered a lot more questions, and had not blocked freedom of information requests to understand what is going on between the sponsor of the Bill and some of these devolution issues, we could have had more progress. I was grateful to the noble Baroness, Lady Smith of Llanfaes, and the noble and learned Lord, Lord Thomas of Cwmgiedd, who agreed on the first day that we would not cover every single issue about Wales. This was done very deliberately, so that we could have a proper, detailed debate about the governance structure applying in this case. I have already set out that I would be inclined to support many of the amendments tabled by the noble Baroness, Lady Smith, to transfer some of that decision-making. As the noble and learned Lord, Lord Thomas, pointed out, on the issue of smacking, that has already happened. I did not think that it would be that different or that radical for the issue of assisted dying also to be considered a competence to be passed across to the Welsh Senedd and Welsh Government. The suggestion has been that I am just...
Amendment 165 withdrawn.
Amendment 166 not moved.
My Lords, I inform the Committee that, in the next group, we will be joined by a remote speaker. I shall call the remote speaker directly after the next amendment has been proposed. Amendment 167
Moved by
167: Clause 5, page 3, line 12, leave out “seek assistance to”
Baroness Fraser of Craigmaddie
My Lords, I want to bring your Lordships back from Wales to the speech, language and communication issues that affect everybody equally right across the United Kingdom. My amendments in this group, Amendments 167 and 546, seek to ensure that people who have serious speech, language and communication issues have an element of protection in the Bill and that they are supported in accordance with best practice. I remind noble Lords of my interest as chief executive of Cerebral Palsy Scotland. I have drawn on my organisation’s experience of supporting people with serious communication issues to inform my remarks. Amendment 167 is a probing amendment designed to explore the specifics of what is meant by seeking assistance. This is not about the requirement to self-administer, which, if we get to it, will be explored later in Clause 25. This section is to do with the preliminary conversation. Amendment 546 would simply add those with communication and speech difficulties to the list of those who may be provided with an independent advocate in Clause 22. The Bill currently sets out in Clause 5(4): “If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters”. I have taken that to cover those for whom English is not their first language, but I am not convinced that it covers a situation where someone has to communicate...
AAC users report to us time and again that they are not listened to, and that affects how much control they feel they have, and how much real choice they have, over situations like housing, social care and health. How will they feel in a preliminary conversation? We know that this population feel misjudged because of their communication requirements and that they are often considered by others, including health professionals, as not having the ability to communicate their thoughts, feelings, needs and opinions. That has a direct impact on mental health and social isolation. For example, at Cerebral Palsy Scotland, around 15% of adults who access our services are AAC users and, of those, over 40% request mental health, well-being and psychological support.
So those with complex communication and speech difficulties who wish to access assisted dying will require significant excess support that goes way beyond provisions for literacy barriers or interpreters. More concerningly, given the often too perfunctory conversations that I know occur with this population regarding health services, care packages, housing or any other life choice, I cannot be confident in the average GP surgery having the expertise, knowledge and time to facilitate a meaningful conversation that enables the full range of options to be explored and understood without employing assistance outwith that currently envisaged in the process laid out in the Bill.
My Amendment 546 refers to Clause 22, on the role of independent advocates. Subsection (4) says that a person can have the help of such an advocate if
“they may experience substantial difficulty in understanding the processes or information relevant to those processes or communicating their views, wishes or feelings”.
I argue that AAC users may be perfectly capable of understanding processes and information, but the communication of their views and wishes is far too often ignored and they are not given the time and support to be aired. These populations would undoubtedly require assistance from others to navigate the process, yet it is not clear how they can go about seeking such assistance, from whom and at what stage, nor that there are safeguards in place so that we know the person being spoken for has clearly decided to end their own life.
Does the noble and learned Lord accept that his earlier amendments to lessen the duty on doctors to support communication issues have increased our concerns and resulted in the amendments in this group being necessary? If informed consent at every stage is at the heart of the Bill, he will have no objection to amendments that ensure, as the GMC guidance urges, that all possible efforts are made to ensure effective communication with patients. I beg to move.
My Lords, I shall speak to Amendment 167 in the name of my noble friend Lady Fraser of Craigmaddie. In doing so, I should make it clear that I support the other amendments in this group, and I join other noble Lords in saying how good it is to see my noble and learned friend Lady Prentis of Banbury back in her place. My noble friend Lady Fraser outlined how comprehension and communication can be a real challenge for some people because of their disability. The amendment invites us to think differently-to view the need for clarity from their perspective, not ours. That means our accepting that what may appear to many to be an unnecessary clarification will, to others, be essential. Whatever position one takes on either the principle of assisted dying or indeed the Bill, surely the case for making the language in the Bill as clear as possible, for both the many and the few, is overwhelming. Doing so is ultimately about meeting the anticipatory duty to make a reasonable adjustment on account of disability. It was your Lordships’ House which helped to write that duty into law when it passed the Disability Discrimination Acts of 1995 and 2005 and the Equality Act 2010. Amendment 167 therefore gives us an important opportunity to show that we, as a law-making body, honour the duty to make reasonable adjustments, just as we require by law others to abide by that duty. I hope the noble and learned Lord will recognise our responsibility to be seen to lead by example and to ensure...
My Lords, Amendment 174 is in my name, and I am grateful to the noble and learned Lord for the meeting on this issue. This amendment states: “Any interpreter provided under subsection (4) must be aged 18 … or over” . It is a probing amendment. If you put two lawyers in a room and give them wording from the NHS guidance saying that it is “inappropriate” to use children, you would have a fascinating discussion about discretionary versus mandatory, and that is the point behind this amendment. It might be that a different age, say 16, is appropriate, but since meeting with the noble and learned Lord, I have looked at certain guidance from particular NHS hospital trusts. Leicestershire Partnership NHS Trust states that you “must not” use children. The Milton Keynes University Hospital trust says that children “should not” be used as interpreters. So we have overall NHS guidance using the word “inappropriate”, which seems to imply discretion, but then we have certain hospitals-I obviously have not checked them all-using mandatory language. It is important that we consider whether, in this scenario, there should be any discretion to use children, whether they are under 18 or, as I say, under 16. The TIA process should be mandatory, because it is a substantial process. This is the communication of a profound state of affairs. It includes numerous complicated stages, from a preliminary discussion to different co-ordinating doctors. It involves a Mental Capacity Act assessment and...
Baroness Nicholson of Winterbourne
My Lords, I will speak in support of my own Amendment 171, where I am suggesting that there is an adjustment to insert “hearing or visual impairments”. I declare an interest on both. First, I am a vice-president of Mary Hare School for deaf children, which is one of the world’s most wonderful schools for deaf children, not just in the United Kingdom but internationally; I have been a vice-president for a very long time, as were my parents before me. I do not speak on its behalf. Secondly, my other interest is that I recall my darling mother, who was completely deaf, completely blind and 100% paralysed for 13 months before she died, because of an unfortunate slip-up in an operation. It was, I am afraid, just one of those things. I therefore understand the needs of looking after someone who is 100% disabled, fully blind and fully deaf.
It is for those reasons that I put forward this amendment. It is important that deaf people should have an amanuensis-somebody to write. One-third of our total population has now been defined as deaf. I believe this has probably always been the case, but we only know it now because infinitely more sophisticated instruments are available to analyse deafness that were not there before. My instinct is that it has probably always been the case, but we now know about it. Therefore, the foolish phrase “hard of hearing” can be discarded, because we know exactly what levels of hearing are lost. My own hearing loss came because, sadly, there were no vaccinations at that time. German measles nearly killed my mother and certainly dismissed any potential of my having any hearing when I was still in the womb. That does not really matter, but I do know, therefore, that an amanuensis is key.
Your Lordships’ House, incidentally, is the worst place in which I have ever worked-not because of the personalities. Indeed, I have a fantastic communication which is easy as pie with the noble and learned Lord, Lord Falconer, for example, and, although I disagree with him profoundly, with one of the other noble and learned Lords. It would be easy as pie to lip-read were this Chamber and our committee rooms better than they are today. This is not necessarily a feature of Parliaments. I have had the good fortune to work in perfect surroundings in the European Parliament in Brussels, the Council of Europe in Strasbourg, the NATO parliamentary setting, which is also in Brussels, and in other Parliaments. It is this Parliament and particularly this upper House that is deficient. We managed to get much better hearing and sight facilities, for example, in the other place many years ago. It is this House that is deficient. I raise that with particular fierceness because I believe it influences the point I am making. Otherwise, I would not bother to raise it.
We just had a fantastic National Health Service report on children born without hearing. As one would have thought, one or two children in every thousand are born with significant hearing difficulties. The problem is that the National Health Service can do nothing about it. It is not that the facilities do not exist; it is that the National Health Service is already so overloaded that it just cannot cope. Children being born with this deficiency are not able to be properly cared for. With all these different trusts, the difference will be very acute according to where you happen to be born. I say that not as a criticism of the National Health Service, which I profoundly support. As a former ambassador for the World Health Organization, I have argued for the NHS, as the WHO does, for many years. I think it is the most magnificent institution, but somehow it is not quite able to cope yet with deafness. I would also suggest that the reasonable adjustments legislation, which has been wonderful, cannot be fulfilled. The National Health Service has the competence, but it does not have the capacity to do this.
Unless the statistics are inaccurate, which is often the case, of those with deafness who request somebody to be with them for a medical appointment, only 7% are given assistance. From the top to bottom of society-if I could suggest that your Lordships’ House is the top of society, and the bottom is the National Health Service care for babies-deafness is not looked after by our system.
On top of that, there is no unified National Health Service, but different elements of the National Health Service see it as within their own authority to ignore parliamentary Acts. I have examples of that. My point is that, although I am absolutely sure the noble and learned Lord has the warmest of feelings on this and the right ideas, I do not think he will be able to get the National Health Service to do anything about it.
I think it would help if we were to insert in the Bill an amanuensis for the deaf and perhaps Moon Braille, which is the best thing for really elderly, very disadvantaged people at the moment in hospital. Without that, there will be no help at all. As deaf people, our immediate reaction when we do not understand something is to agree; we just say yes. It is the quickest way of getting away because you know very well the person will merely repeat it in the same tone of voice with the same words. You will not be able to lip-read it any better, which is the way in which 99% of deaf people understand others. I think that we will get a lot of deaths when people really do not have the agency to agree.
My Lords, I was deeply interested by the remarks of the noble Baroness, Lady Fraser, and her amendment. I would like to confirm from personal experience that a young man very well known to me can barely speak at all. He has therefore been effectively silent all of his life. Through a system called Spelling to Communicate, it turns out that he has a vast range of knowledge and high conceptual skills, which have only been discovered very late. He is now communicating by these means, but he can only communicate, at this stage at least, through his mother. I very much support what the noble Baroness has said, but-forgive me if I have missed something-I do not quite understand how the wording of her amendment will achieve the effect she intends.
Baroness Fraser of Craigmaddie
I thank the noble Lord. By probing the words “seek assistance”, I am trying to explore what assistance is provided. The noble Lord is quite right in the example of his friend. There are people who cognitively can absolutely understand what is going on. Therefore, in the context of this Bill, they would understand the assisted dying process. But they would need help with the tools by which to communicate their will, and the time and space and sometimes the vocabulary to do that. I note that, in the noble Lord’s example, his friend has only recently come to it. An issue is understanding what the right thing is for some of these people. He also said he can, at the moment, communicate only through his mother. That is my other fear. Far too often with this population, people speak for them because they know them best. I hope that clarifies my intentions.
My Lords, I support the amendments in this group, particularly Amendment 171 in the names of the noble Baronesses, Lady Nicholson of Winterbourne and Lady O’Loan. Clause 5, as we have heard, introduces a key element in the infrastructure of assisted dying in this Bill by providing what is intended to be a safe, but not mandatory, introduction to the subject of death with the assistance of another human being. For proponents of the Bill, the advantages of such an introduction are obvious. In their minds, it will remove a good deal of unnecessary distress on the part of those who wish to proceed with such an option and on the part of those who do not. However, as we have heard from those of us who have long experience of pastoral encounters, the experience is likely to be rife with pitfalls. This amendment and the one that follows it, about which I shall say a little and leave it to others to say more, is designed to correct some very obvious impediments to mutual understanding. A good deal of communication is picked up visually. Visual impairment requires an extra dimension when communicating. My twin brother was born with a severe hearing impairment, so I speak with lifelong experience of what it is to communicate thoughts, directions, information and feelings appropriately to someone who has a hearing impairment. Finally and briefly, for I understand that the right reverend Prelate the Bishop of Newcastle wishes to say more, I also commend Amendment 171A. My experience of...
My Lords, I commend the introduction to this group by the noble Baroness, Lady Fraser. At the end of a person’s life, clear and honest communication really matters. When my husband was dying-he had motor neurone disease-he increasingly relied on AACs to communicate. This did indeed test everyone’s patience. People who are dying must be able to understand what is happening to them and what their options are, as well as being able to say what they want and need. But this works only if people understand, and that means that communication must be accessible. I will focus my remarks on people with learning disabilities. Around one in six of the adult population struggles with literacy-not just people with learning disabilities. That is why the Bill should not just say that “reasonable steps” must be taken; it needs to be much stronger than that. It should say that they “must provide” adjustments, whether that is interpreters, simpler language or information in different formats. In the Equality Act, making reasonable adjustments is a legal duty, not a choice. It is about making sure that everyone is heard, understood and treated with dignity when it matters most. Clause 39 requires a code of practice to address the provision of information and support to people with learning disabilities. Clause 40 requires the Secretary of State to issue guidance on the operation of the Act and to consult people with learning disabilities prior to issuing this guidance. I have not tabled...
My Lords, I rise to support the amendments in this group but first, if the Committee will permit me, I turn to face my noble friend Lady Nicholson of Winterbourne. She is absolutely right to criticise the lack of facilities for deaf people in this Chamber. Older parliamentarians may remember the wonderful Labour MP Jack Ashley, who was profoundly and totally deaf. Even 30 years ago, the House of Commons was able to produce some gadget for him so that he could follow proceedings. That was before the digital era. Surely, in the name of God, it is possible now to produce some gadget so that my noble friend and others who may be profoundly deaf can read the lips of all those of us who are speaking in this Chamber.
In this group of amendments, we return to the most fundamental safeguard in the entire Bill: whether the person’s true wishes are understood, expressed and protected. If we cannot guarantee that, other safeguards become illusory.
Amendment 167 in the name of my noble friend Lady Fraser does something very simple but profoundly important: it restores clarity. It would ensure that Clause 5 refers explicitly to a person’s wish
“to end their own life”,
rather than the softer and more ambiguous phrase, “seek assistance to”. If Parliament prefers language designed to obscure the harsher aspects of what the law will permit, we must ask what message that sends to clinicians interpreting the law in practice. If the Bill itself is imprecise, does this not draw out the risks that doctors may also be imprecise in their interpretations? This amendment is not a rhetorical flourish; it is about informed consent. A person cannot meaningfully consent to something that is not described plainly, and a doctor cannot meaningfully assess capacity if the statutory language itself avoids naming the act. Precision is not pedantry; it is protection.
Amendment 171 addresses a glaring omission. The Bill currently requires adjustments only for “language and literacy barriers”. Yet the Government’s own equality impact assessment states explicitly that:
“Persons with learning disabilities or deaf persons … may struggle to understand the information provided to them in written or oral form”,
and that BSL
“is not a translation of English”.
We have evidence from New Zealand where a deaf man could not even access the assisted dying service because he had to ring a phone number and could not hear what was going on. We do not need to repeat those mistakes here.
The Mental Capacity Act requires that a person be able to understand, retain, weigh and use information. For someone with a hearing or visual impairment, that is impossible unless the information is provided in a form they can actually access. The National Down Syndrome Policy Group put it starkly:
“Adjustments and accessible content are essential”,
and current Easyread materials are often wholly inadequate. If we are legislating for a process that ends life, the minimum we must guarantee is that the person can see, hear or otherwise access the information on which their life-ending decision depends.
Finally, Amendment 171A addresses a form of vulnerability that is too often invisible in legislation: the cultural, religious and sex-based pressures that can shape a woman’s decision-making long before she enters a consulting room. The evidence is sobering. Naz Shah MP told the Commons Committee that she was coerced into marriage at 15-not through overt force but through the “power of influence” from those she trusted. She warned that such pressures can lead people to make decisions
“neither in our best interests nor of our own choosing ”.-[ Official Report , Commons, Terminally Ill Adults (End of Life) Bill Committee, 12/2/25; col. 438.]
Professor Jane Monckton-Smith and Cherryl Henry-Leach told our own Lords Select Committee that victims of coercive control routinely deny they are being coerced, and that GPs frequently miss the signs. Dr Jamilla Hussain, already referred to, described ethnic-minority women in Bradford who are “structurally disadvantaged”, fearful of services and lacking “culturally competent” support.
If we do not explicitly recognise these barriers in the Bill, we risk creating a system in which the most vulnerable women-those least able to resist family or community pressure-are the least protected. Amendment 171A simply ensures that where cultural, religious or sex-based barriers exist, they are acknowledged as potential barriers to communication and consent. It is a safeguard rooted in lived experience, not abstraction.
These amendments all share a simple purpose: to ensure that when a person says they wish to end their life, we know-really, truly know-that it is their voice, their will and their informed decision. Amendment 167 ensures that the Bill speaks plainly. Amendment 171 ensures that people with sensory impairments can understand what is being asked of them. Amendment 171A ensures that women facing cultural or religious coercion are not unprotected. I conclude by saying that if we cannot guarantee clear communication, accessible information and freedom from coercion, we cannot guarantee informed consent-and if we cannot guarantee informed consent, we have no business legislating for assisted dying at all. I urge the noble and learned Lord, Lord Falconer of Thoroton, to accept that proposition, and I urge the Committee to support these amendments.
My Lords, I am grateful to my right reverend friend the Bishop of Southwark for preparing the way for some of the comments that I wish to make briefly now. Broadly, this group seeks to address issues around communication, language barriers and interpreters and I support the amendments laid before your Lordships’ House in that regard. Amendments 171A and 174A in the name of the noble Baroness, Lady Nicholson, would require the provision of an advocate for women who might have additional vulnerability to coercion, especially due to cultural and religious factors. It is a very interesting and significant idea, which highlights the complex factors at play in considering certain groups of people. It is often those who are subject to health inequalities who hold the most distrust towards the health service, and understandably so since we are still in the shadow, even now, of the pandemic. The noble Baroness, Lady Berridge, has already raised the evidence given by Dr Jamilla Hussain earlier in the passage of this Bill. Dr Hussain warned us about failing to recognise this issue of inequality. She said that “introducing this Bill without addressing structural inequities and mistrust will likely result in widening disparities, poorer end-of-life experiences for already disadvantaged groups and potentially inappropriate deaths”. The provision for raising assisted dying with people, as currently in the Bill, could be highly damaging to the already strained trust in the health service....
My Lords, I have put my name to Amendments 171, 171A, 173, 174 and 174A in this group. The group deals with obligations placed on a registered medical practitioner conducting a preliminary discussion to ensure that it will be possible for the patient to communicate well with the doctor, to hear and understand what is being said, to respond and, in so doing, to be understood. The Bill provides for adjustments for language and literacy barriers, including the use of interpreters. In Amendment 171, so articulately presented by the noble Baroness, Lady Nicholson, she rightly seeks to add provision for hearing and visual impairments. By Amendment 171A, the noble Baroness also seeks to ensure that provision is made for cultural, religious and sex-based factors. This covers a wide range of situations, perhaps the simplest of which might be the reluctance of a woman to speak through a male interpreter in a discussion that might include matters of great sensitivity. Similarly, men may be uncomfortable or even distressed by having such conversations with a woman. Religious considerations may also be profoundly important to the person having the discussion. Many religions seek to deter suicide. This has to be taken into account, particularly to ensure that the person understands exactly what they are agreeing to and the consequences of taking whatever lethal drug is prescribed. By Amendment 174A, the noble Baroness, Lady Nicholson, seeks to introduce an advocate with particular...
Baroness Nicholson of Winterbourne
My Lords, I follow the noble Baroness, Lady O’Loan, with reference to our shared amendment, Amendment 174A. I apologise for not raising this in my previous discourse, but the differences are so acute that I just did not feel it right to share them in the same comment, and I believe the Companion allows me to speak twice in Committee. I declare an interest in this amendment’s matters as I have worked with enclosed communities for most of my life. My most recent responsibilities have been with the AMAR International Charitable Foundation, which I founded about 35 years ago. We have worked consistently with the enforced enclosed community of the Marsh Arabs and the enclosed communities of the Yazidis-the genocide victims-and others, covering different parts of the globe. I work particularly closely with the Church of Jesus Christ of Latter-day Saints-the Mormons, as they were known-and with other enclosed communities. My concern today is for Muslim women. We have two minority faiths in the United Kingdom where women are deemed to be secondary to men. As the noble and learned Lord will realise, I know very well that women are actually superior to men, not inferior. I am not quite sure whether I will cause a dispute between the right reverend Prelates the Bishop of Newcastle and the Bishop of Southwark on this, but either way I welcome and endorse what they said about minority faith communities in the United Kingdom. I am speaking particularly strongly about Sunni women who do...
May I ask the noble Baroness to speak to the amendment?
Baroness Nicholson of Winterbourne
This Private Member’s Bill has not been discussed with the mosques in London, nor anywhere else. My suggestions are that we have a meeting, that I bring suitable people with me and that we start to open this up. It is against the faith to commit suicide, so this is very important.
Of course I agree to a meeting and the noble Baroness should bring anybody she thinks appropriate to it.
My Lords, I will raise 50% of a registered interest: I am 100% deaf in my left ear. The maths works, right? My right ear is quite good, thank God, but it is useful in many aspects of my life when I pretend that I did not hear at all. I support all the amendments in this group. I was not going to speak, but I am moved to speak to Amendment 171 from the noble Baroness, Lady Nicholson, whom I have known for many years. I pay tribute to her bravery and courage, which has enabled her success in her life of service to vulnerable people, and to my noble friend Lady Fraser for her Amendment 167, which she so eloquently introduced. Her professional work with people who often cannot communicate for themselves is well known. The point I want to make to people who support the Bill and want to rush it through is that this group of amendments shows the vital importance of the process that we are going through. It is a real disgrace that these people are intent on trying to rush this flawed legislation through without this sort of vital discussion. These amendments may affect one person to whom by accident, by being unable to communicate or hear, the wrong thing happens. The Bill should be, and should work, for every individual. That is why I urge the noble and learned Lord, Lord Falconer, to find a way to include these matters and these important aspects in the Bill.
My Lords, I think everybody must have been affected by the comments from the noble Baroness, Lady Nicholson. She made very sobering revelations about her experience, which is very broad and much to be admired. This group of amendments brings into sharp focus the sheer scale of the complexity of bringing assisted suicide into the NHS context. We have heard pleas from the movers of some of the amendments that specific provision be considered because of the needs of those with complex communication difficulties, including hearing, language and cultural challenges. I will draw the House’s attention to other matters that have not been addressed in the context of a busy hospital with overworked staff. In addressing other groups of amendments, I said that many people seem to view the operation of the current NHS through rose-tinted glasses. Hospitals these days are not as they are portrayed in the TV series “Heartbeat” or “Call the Midwife”, which are set in the 1960s. Gone are the days when consultants had time to come round for friendly chats at their leisure with patients and family. Parliament and Governments have demanded that targets be met because of increasing demand and a relentless growth in our population. Meeting targets means throughput, and throughput means patients going in and out as quickly as possible. I struggle to see how the Bill, if enacted, can be safely implemented in current hospital settings. In a busy NHS ward, consultants doing their ward rounds in the...
I declare an interest as a non-executive director of the Whittington Hospital, where we serve many of these communities. I can assure the noble Lord that we put a lot of resource, very successfully, into supporting our clients and patients, from whichever group they come and whatever capacity problems they may have. You have to live in these communities to understand that the NHS is completely aware of the need to do that.
I am delighted to hear that, but I am also very aware of the pressures on an NHS hospital-perhaps not in London but in other places-where the staff are run off their feet day and night. We are imposing-
I also note that I come from Bradford, where all my family live, and we do the same there, too.
I am delighted to hear that, but I can assure the noble Baroness that it is not a universal situation. As I was saying, 1.7 million Londoners do not have English as their first language and 300,000 do not have English at all-that is equivalent to a significantly sized city. According to the 2021 census, only 63.8% of households consisted of members who all had the same main language-I think that the noble Baroness, Lady Berridge, also mentioned the 2021 census. Some 6%, or 1.5 million households, consisted of people who had different main languages in the same house. Those figures are five years out of date, and with the surge in immigration since then, I am sure the figures are much greater. The noble Baroness, Lady Nicholson, highlighted the circumstances of people with hearing difficulties. Added to that, in a traumatic situation of discussing whether a person wishes to be assisted to die, how will a patient be able to absorb such difficult information from a medical practitioner who perhaps does not have English as his first language or vice versa-a medical practitioner may have a patient whose first language is not English?
These matters cannot be swept under the carpet. They are critical to establishing exactly whether a patient is fully informed and to their being determined to be making an informed decision, which is at the core of the legislation.
As the Bill has been progressing, I am more convinced than ever that the NHS is not a suitable place for assisted dying to take place.
My Lords, I have Amendments 172, 322, 322A and 406 in this group, which address the requirements of accessibility, BSL and Braille. In speaking to her amendments, the noble Baroness, Lady Fraser of Craigmaddie, raised a number of issues. While I tabled all my amendments before the start of Committee, her speech showed some of the areas where there is still some cause for concern-certainly, around things such as programmable text and the way that it is used. My noble friend Lady Campbell of Surbiton is not able to be in her place today, but she raised the issues faced by Lucinda Ritchie, who, as a woman who used communication aids, had to go to a care home. The nurses were not able to set up the communication aids, and she, in essence, became voiceless. As the debate today has highlighted-in the words of the noble Baroness, Lady Nicholson-if this Chamber cannot provide reasonable adjustments for Members, that reflects a bigger problem that exists outside in terms of whether people can really understand what is going on. The Bill takes its foundation from the Mental Capacity Act. We have to get to grips with whether someone can understand, retain and use information. I am against the process of assisted suicide being called treatment. If we cannot communicate with people properly, the individual might be confused about what they are being told. In New Zealand, as has already been raised, people have to ring a phone number. Dr Jeanne Snelling said that it is completely...
My Lords, before I speak to the substance of the amendments in this group, I pay tribute to the noble Baronesses, Lady Nicholson, Lady Berridge, Lady Fraser of Craigmaddie, Lady Grey-Thompson, Lady Hollins and Lady O’Loan, and the right reverend Prelate the Bishop of Newcastle. They have all stood up for a particularly vulnerable group of people, and they are absolutely right to do so. I am sure that the noble and learned Lord, Lord Falconer, is listening most carefully to their arguments. Individuals with speech, language and hearing difficulties are particularly vulnerable, and it is imperative that they fully understand the process, their rights and the terms of the Bill before they can access the provisions made within it. My noble friend Lord Blencathra said that we need to “really, truly know” that an individual understands what they are doing, and the noble Baroness, Lady O’Loan, used the phrase “crystal clear”. They are both absolutely right. Surely how society cares for the most vulnerable of its citizens is an unmovable benchmark. Society must protect people with communication difficulties. The noble Baroness, Lady Berridge, specifically questioned the Government, and His Majesty’s Loyal Opposition believe that it is fair and reasonable to ask the Minister what specific work officials and Ministers have undertaken to establish the core risks posed by the Bill to those with hearing, speech and language impediments. In the view of His Majesty’s Government, how...
My Lords, I am most grateful for the debate that we have had today. In keeping my comments limited to amendments on which the Government have major legal, technical or operational workability concerns, I turn first to Amendments 171A and 174A, tabled by the noble Baroness, Lady Nicholson. The duty outlined within these amendments may prove difficult for doctors to discharge as they are ambiguously drafted and use undefined terms such as “religious, cultural or sex-based” barriers. It is also a mandatory duty that does not afford discretion to the doctor to refuse unreasonable requests. The duty to appoint an advocate conflicts with Clause 22. It is unclear how these proposed advocates would be appointed or trained, or what their role or responsibilities would be. Furthermore, your Lordships’ Committee may note that where a person has religious, cultural or sex-based barriers, the amendment would also require such a person to be provided with an advocate who has training in and experience of relevant safeguarding issues and must be the same sex as the person seeking assistance. Introducing a more extensive mandatory duty for the provision of adjustments, including an advocate, may give rise to workability issues, as the cohort of advocates meeting these criteria could be very limited and may result in a person being delayed or unable to take part in a preliminary discussion.
Amendment 322, tabled by the noble Baroness, Lady Grey-Thompson, would introduce a mandatory duty on the co-ordinating doctor that does not contain any discretion to refuse unreasonable requests. It is therefore not clear who would be responsible for translating the document, who bears any associated costs, or whether the duty must be completed within a particular time. This ambiguity and lack of detail could result in difficulty discharging the duty. The amendment would also introduce overlap with existing duties in the Equality Act 2010 to provide reasonable adjustments, including the duty to provide information in an accessible format in Section 20(6), as well as General Medical Council guidance.
I say to a number of noble Lords, including the noble Earl, Lord Effingham, that a number of the questions are policy questions for the sponsor and Parliament to decide. However, as I have said previously, should the Bill pass, the Government will work to ensure that it is delivered.
For the other amendments in this group, on which I make no comment, any workability concerns are likely to be less significant. As noble Lords are aware, those amendments have not had technical drafting support from officials, so the drafting may not be fully workable, effective or enforceable.
I am very grateful to the noble Baronesses, Lady Hollins and Lady Nicholson of Winterbourne, for sharing their experiences with us-in the case of the noble Baroness, Lady Nicholson of Winterbourne, the death of her mother and the circumstances of her mother’s life; and in their case of the noble Baroness, Lady Hollins, the circumstances of her husband’s later illness. These amendments concern ensuring that people with communication difficulties, hearing difficulties or particular cultural pressures are properly able to access assisted death, but also, very much picking up the words of the noble Earl, Lord Effingham, that they should have an assisted death only if it is crystal clear they have understood everything and it is informed consent. I pay tribute to the noble Baroness, Lady Fraser of Craigmaddie, for the intelligent and sensible way she introduced the amendments. I underline that I think everybody in the Committee would be of the view that the two aims are no discrimination and absolute clarity that somebody has agreed. That is the basis upon which I, as a sponsor of the Bill, approach this matter. I shall deal first with what the current Bill and my amendments make provision for. Clause 5 states: “If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters”. We take the view that that clause is...
The noble and learned Lord has not covered my point.
In relation to the point from the noble Baroness, Lady Berridge, that there should be an absolute exclusion on interpreters under 18, she makes the point that in a case involving, for example, a person under 18 who is the child of somebody going through an assisted death, it would be wholly inappropriate for them to have to deal with that. Again, I do not think we should provide for that in the Bill. It should be dealt with by code of practice. I can envisage circumstances in which somebody who is terminally ill and who does not speak English is comfortable only with their 17 year-old child being the interpreter, so I would be not in favour of an absolute exclusion in those circumstances.
To clarify, is the noble and learned Lord saying that a mandatory exclusion would be in a code of practice? We cannot do that unless it is in the Bill. In relation to the latter point, we will just have to agree to differ on the safeguarding issues in relation to a 17 year-old, but would he be agreeable to 16 being the cut-off and mandatory?
I am not in favour of a mandatory bar on any young person. I expect it to be dealt with in a code of practice. I agree that unless there is a mandatory provision in the Bill it will not be effective, but I am not in favour of that mandatory ban.
Baroness Fraser of Craigmaddie
My Lords, I thank everybody who spoke in the debate. I am very conscious that I stand between noble Lords and their lunch, so I will try to sum up quickly. I agree with the noble and learned Lord that we are all trying to ensure the same thing. I am disappointed by his response pointing to his amendments around the right to an independent advocate, because that is only one small part. My Amendment 167 was really about seeking assistance in the preliminary conversation. The reason for that is understanding that, as my noble friend Lord Shinkwin so eloquently said, it is about thinking about the process from the perspective of the person with the communication issues. Any of us might find ourselves at any moment in our life, through illness, accident or frailty, in this position. Turning the tables and thinking about how we would feel going through this process and the preliminary conversations is really important. I want to just quickly give examples of why words really matter and why it is not just about independent advocates. We have the next group after lunch on that. In Scotland we had the “right to speak” legislation that went through after the campaigning of Gordon Aikman, and the Scottish Government put in the right for people to access communication aids and support. The problem in practice is that many people have been able to access aids but not the support; that was the essence of my probing. The noble Baroness, Lady Hollins, mentioned training. Yes, people are...
Baroness Nicholson of Winterbourne
I add my thanks to the noble and learned Lord, Lord Falconer, for his comments. I look forward immensely to the meeting with him. I also point out that his colleague on the Front Bench stood up and said something about me and, of course, I could not hear it. Hearing is a very difficult thing to ignore. I sincerely hope that the amendments will cover that.
Baroness Fraser of Craigmaddie
I beg leave to withdraw my amendment.
Amendment 167 withdrawn.
Sitting suspended. Committee to begin again not before 2.25 pm.
Amendment 168
Moved by
168: Clause 5, page 3, line 15, at end insert “, at which an independent advocate must be present.”
My Lords, in moving Amendment 168, I will speak to a number of amendments in this group. The lunchtime break was very useful in being able to reflect on the discussion of the previous group and think about where the two areas may interact. Clause 22 of the Bill introduces a new role of independent advocate for people with “a learning disability, …a mental disorder under section 1 of the Mental Health Act 1983, or … autism”, or anyone who “may experience substantial difficulty in understanding the processes or information” given. My concern with this clause is that it leaves almost all vital detail on independent advocates to regulations set by the Secretary of State. The Bill sponsor’s new clauses on independent advocates were published on 29 January, and the noble and learned Lord says that these are intended to respond to the comments from the Delegated Powers and Regulatory Reform Committee that the obligation to appoint independent advocates should be on the face of the Bill. Although the new clauses from the noble and learned Lord, Lord Falconer, do put more detail in the Bill, I believe that they weaken the provision of independent advocacy for vulnerable people. The new provisions can be optional or waived, and the advocate need not be present. To have an advocate is simply to instruct one. I believe that the new clauses fail to address the key parts of the Delegated Powers and Regulatory Reform Committee feedback. The obligation to appoint independent advocates must...
I do not think that my amendments are perfect; the best route lies somewhere between this and the other debates that we have had. When we debated the navigator, there was a lot of concern raised about whether that person would navigate them towards assisted suicide. My concerns are in a similar place with the advocate role. It is probably more likely that someone who took on this role would have a more positive attitude towards assisted suicide. If we look at other areas of healthcare settings, people in these types of roles have a huge workload. We have already debated the impact on those with Down syndrome and how they may feel that they need to please the individual. Bethany Asher, the award-winning actress, said:
“I am worried that in years to come when my mum isn’t here any longer, I may be pressured to end my life when I didn’t want to because I may be seen as a burden on the health service if they don’t want me any more”.
On 16 January, the noble and learned Lord said that he was not in favour of an assisted dying help service, but my amendments seek to strengthen what is there in the Bill. We also have to think about the implications of whether somebody has an independent advocate or not. The equality impact assessment talks about the cost implications. There could be a saving of £2,333 from not having an independent advocate. I listened to the honourable Member in the other place for Bexleyheath and Crayford, Daniel Francis MP, when he talked so powerfully about his daughter. He is an individual with a lived experience who understands the challenges that could lie ahead. I therefore think the independent advocate must be in place before any discussions are had. We have talked about how to engage with parents in previous debates and what they may offer-or, in some cases, not offer-to the process. As I understand it, Marie Tidball in another place hoped that the independent advocate would be present from the start of the process. This is also something that was covered by Dan Scorer from Mencap, who understands the challenges faced by people with learning disabilities.
I briefly mentioned training before. The Mental Capacity Act 2005 did not impose requirements for training of an independent mental capacity advocate. Twenty years on, there is little training specified and, as I said before, it is poorly paid. We have to think clearly about communication training as well.
I have thought about whether this role could be maybe taken by a social worker, but it might be that two and a half times, or more, the amount of time is required to allow this individual to play the right role in the system. What if the independent advocate is a carer? What do they know about the system?
Many families have raised concerns about this part of the Bill in terms of their concerns perhaps being brushed to one side. We know from the 2022 NHS England review that there are issues with engaging with wider families. So many people have been in touch with me about this, because this is the crux of the problem of who is there to support and who is there to encourage or discourage. We have also debated age before, but I think we still have to look at people in that 18 to 25 year-old age group. It may be that somebody is 18, 19 or 20, but may have, through minor learning disabilities, a mental capacity age that is younger. The role that this individual has is then even more important.
The Children’s Commissioner said that young people have a fundamentally different view of death and dying, and there were very mixed views from the children in her report. I will read two quotes:
“I read a lot of stuff. People saying really horrible things about people with disabilities, and I think that’s a direct effect of the Bill. [I am] also worried about the drug. It could still actually cause the person a lot of pain ... It’s a … slippery slope. Has safeguarding been watered down? Not only do young people need to be consulted more, we also need to fix the issues that the NHS has first, rather than fixing it at the end”.
That young woman was 17. There is also a quote from a young woman of 16, who said:
“What if it ends up removing people from society that people don’t want in society?”
I look forward to a very interesting debate on this group of amendments. I beg to move.
My Lords, I recognise that the noble and learned Lord, Lord Falconer of Thoroton, has tabled Amendment 548A, which completely leaves out Clause 22. It could be useful to hear from him early in this group, recognising that he has not answered questions on advocates in the past because of the amendment he has tabled.
Lord McCrea of Magherafelt and Cookstown
My Lords, I have tabled Amendments 540B and 544A in this group. My intention with these amendments is to probe how we have ended up with the list of eligibility criteria for qualifying for an independent advocate contained in Clause 22(4). These provide that a person may qualify for an independent advocate if they have a mental disorder, including a learning disability, if they are autistic or have a substantial difficulty in understanding or communicating information. Clearly, there are obvious difficulties with an approach which attempts to list certain conditions but not others. Why, for example, is autism explicitly mentioned in the Bill when Down syndrome is not? I see that the noble and learned Lord, the sponsor, has adjusted his approach to the eligibility criteria in his new Amendment 548A on the subject, presumably to avoid this problem and any unnecessary duplication. The criteria in that amendment centres much more on the “substantial difficulty” test extracted from the Care Act 2014. It would be helpful for the noble and learned Lord, the sponsor, to set out whether he anticipates that this new test will provide for a wider range of people to access an independent advocate. It may also be helpful and useful to get the Minister’s assessment on the same point, and on how that may affect the questions of resourcing and costing set out in the impact assessment. Currently, the impact assessment suggests that 2.5% of people may be eligible for an independent advocate....
My Lords, I will respond to the sensible invitation of the noble Baroness, Lady Coffey, to give a brief indication as to what my amendments here do. The noble Baroness, Lady Finlay of Llandaff, earlier referred to the Delegated Powers Committee, which made a number of criticisms of the previous Clause 22, in particular that it did not specify the circumstances in which it was mandatory to have an independent advocate and that it left too much to regulations. We introduced two new clauses to deal with that. The first proposed new clause is found in Amendment 548A. It first requires that anybody carrying out a relevant activity under the Act has to consider whether the person seeking an assisted death requires an independent advocate. The person carrying out the relevant activity is broadly either the first doctor, the second doctor, the provider of assistance to the patient or a member of the panel. If the relevant person decides that the person does need an independent advocate, the person performing the activity under the Act must give the person seeking the assistance “information about representation and support provided by independent advocates, and … an explanation of the effect of subsection (3)”, which is that if you need support you are entitled to have an independent advocate, but if you do not want the support you can say no to it. Where the person performing the relevant activity is a doctor, as opposed to the panel, they have to tell the commissioner for assisted...
Baroness Hayter of Kentish Town
My Lords, following that, I am concerned about whether I have read Amendment 553 in the name of the noble Baroness, Lady Grey-Thompson, correctly. She did say at the end that maybe not all her amendments were perfectly drafted, so I may have misunderstood it. As I read the amendment-following after the new Clause 22, as my noble and learned friend has just said -it says that any person, not just a qualifying person, “between age 18 and 25 wishing to receive assistance under the provisions of this Act must receive consent from a parent or guardian and must be accompanied by an independent advocate in addition to parent or guardian”. I think I am correct in reading that as everybody, not just a qualifying person. The idea is that someone at the age of 25 still needs a parent or guardian-if they even know where their parents are. Maybe it is partly because I was brought up in the forces, but I know of people who have taken major life and death decisions by the age of 25 while in charge of military units at war. I have known people-in fact, I see some around the Committee-who by the age of 25 have given birth to children, which seems to me an enormous decision that one takes. I, well below that age, took a decision that meant I would never have children. I know of surgeons who before the age of 25 have taken decisions of a life and death magnitude in surgery. There will be people now sitting on the Bishops’ Benches who will know of circumstances in which big decisions are taken...
My Lords, I will speak to a number of amendments in this group. I can be briefer on some because the noble and learned Lord, Lord Falconer, has copied some of my homework and taken it as his own-which I take to be a good thing.
I apologise for not acknowledging that.
Not at all. When I first saw the term “independent advocates” in the Bill, I worried because, in my clinical career as a neurodisability consultant, I have had some very negative experiences of advocates who allegedly were speaking on behalf of people with a range of disabilities but who, we were fairly clear, were not accurately doing so. Some of their behaviours were, frankly, coercive. I know that my noble friend Lady Hollins will have similar experiences and stories to tell. “Advocate” means different things to different people. Under the Mental Capacity Act, the role is to support people to have capacity, often in the context of the need to make decisions on life-saving treatments. That is clearly not what we are talking about here. My amendment to Clause 22(4)(b)-which might now be academic, as the clause is to disappear-tries to frame it as people having difficulty accessing information about decisions they need to make for the purposes of requesting assistance and communicating relevant matters. It narrows it down to a communication problem, in the widest sense of the word. I am slightly concerned that Amendment 548A, from the noble and learned Lord, Lord Falconer, includes “retaining that information” and “using or weighing that information” as part of the process. It is very hard, if someone is not retaining information, for anyone to help them to do so; people who are suffering from dementia or memory loss would otherwise be able to be facilitated to remember...
My Lords, I will speak to my Amendment 553B. It is one of a range of amendments I have tabled, which have been put into a number of groups, to try to deal with some of the concerns that have been raised by disabled people and to provide high levels of safeguards. The amendment overlaps with other amendments in this group, as a lot of us are coming from a similar position, irrespective of our broader attitudes towards the Bill as a whole. As such, I am not suggesting that my amendment would cover all aspects. There is reference in this amendment to one area that we need to get our heads around: how the independent advocate is selected and from where they can be drawn. In the interest of time, I will restrict my remarks purely to my amendment and let others make the case for theirs. My amendment would ensure that there is the availability of an independent disability advocate with “appropriate expertise”-that is as close as I was able to get to defining this-which must be provided by the commissioner for any disabled person within the definition of Section 6 of the Equality Act 2010.
Could the noble Lord indicate which amendment he is talking to?
It is Amendment 553B. As part of that, the commissioner should offer a reasonable opportunity for the person to consult the advocate before a decision is made. Flowing from that, there would then be recorded written reasons for whether that meeting has taken place, whether the offer has been taken up and, arising from that, whether any concerns have arisen from that contact. The point is that those who qualify for this advocate should be disabled, and it should not be a question of a commissioner simply picking and choosing who they feel falls into that category. Even advocates of the Bill would say that this is based upon the idea of autonomy, and autonomy is very much at the heart of this amendment. There must be the opportunity for a disabled person to say that they want to meet or have an advocate. It is a matter of choice for them. Therefore, it would not be forced upon anyone, but the availability of it would be guaranteed. This is important, because we know that an independent advocate can do a number of things. Mention has been made already of the dangers for people with communication difficulties. If we are dealing with a sensitive subject, getting the communication wrong can be critical. For many disabled people, there can be issues around misunderstanding. It is important that we have a situation in which people realise that there are other options, and to have that independent advocate is critical. It can provide a safeguard, because those discussions can be, to...
I have put my name to Amendments 300, 538 to 540, 541 to 543 and 544B in this group because of the importance of independent advocates and the definition of who they may-or should-be made available to. As has already been alluded to, the fact that the Bill provides for somebody with a disability is compounded by the fact that people with a learning disability in particular can want to please those whom they perceive to be in authority over or looking after them. They can think that people will act in their best interests, and they will very often comply with what is proposed to them. That is one of the things that make this issue profoundly important. What is so lacking in Clause 22 is the specificity that would enable one to articulate what an independent advocate is. In a minute, I will come to the amendments proposing a new Clause 22. Amendment 300, tabled by the noble Baroness, Lady Grey-Thompson, proposes a new clause requiring the appointment of special independent advocates for disabled people as defined by the Equality Act. That is a wider definition of those for whom independent advocates should be provided. However, it recognises that, in those moments of considering a choice between life and death, a person needs to be cared for, so that the stresses that they will inevitably experience do not prevent them making an informed decision under the Bill. It is very important for such advocates to be trained specifically in disability rights and the identification of...
My Lords, as the noble Baroness, Lady Browning, is not in her place, she has asked me to introduce her Amendment 538, to which I added my name. It simply says that it would require the Secretary of State to consult “disability rights organisations and the Equality and Human Rights Commission” before making regulations. The Bill is noticeably silent on the actual elements of the role of the independent advocate and allows the Secretary of State to detail what they should do-or not, as the case may be. This feels like a bit of a gap. Several disability organisations have raised real concerns about the Bill and have complained about a lack of meaningful engagement, despite their probably being most at risk if things did not work out quite as the noble and learned Lord the sponsor hoped. This is why they should be consulted when regulations are made; it makes sense.
My Lords, I am introducing six amendments in the name of my noble friend Lord Frost. My noble friend sends his apologies to your Lordships’ House. He is unavoidably detained but hopes to join us during the debate before 6 pm. In his absence, given that these specific amendments relate to the role of neutral advisers and are bracketed along with the debate on independent advocates, I am taking his place. The role of neutral advisers is different from the role of independent advocates, and it is important to draw that distinction. So far, we have been discussing the provision that independent advocates can make to ensure that those living with a series of conditions that may impair their ability to be full participants in the process of deciding on their fate are assisted along the way. It is to the credit of the noble and learned Lord, Lord Falconer, that he has listened to the concerns that have been expressed and has put forward his own amendments, which are there to ensure that people living with disabilities or other conditions can have the support that is believed necessary at that stage in the process. A number of concerns have been expressed by noble Lords about whether the amendment from the noble and learned Lord meets the requirements that have been expressed, but nobody can be in any doubt that he is sincere in his desire to meet those concerns. Neutral advisers relate to a separate part of the process. They relate to Clause 5(6), which states: “A registered...
My Lords, I would like to follow my noble friend Lord Gove’s able introduction of the series of amendments in the name of the noble Lord, Lord Frost, and add a few words about why they are particularly important, giving a little more detail on some of the individual amendments to supplement that given by my noble friend. The amendments from the noble Lord, Lord Frost, hang on there being a neutral adviser to whom a person is directed if the general practitioner, the medical practitioner in the Bill, does not feel willing or able to discuss assisted dying with them. The amendments would ensure that the information was provided by someone neutral. Under Amendment 195, they must keep and report a record of the advice or information given, and the date, to the commissioner within five days; and under Amendment 196, they must be an organisation designated as such by the Secretary of State, by regulation, in consultation with the commissioner. They must also be required to make a declaration, as we have heard, that they have no potential conflict of interest as an organisation by virtue of either employing people or having volunteers on the books who have in some way or another been associated with promoting assisted dying-I am glad to see the noble Lord, Lord Frost, here; I stand ready to be corrected by the teacher-for instance, if the organisation supports assisted dying in principle, if it does so politically or ideologically, or if it does so by means of advocacy or...
My intervention will be brief and is addressed to the noble and learned Lord. Does he believe that his amendments will ever be adopted and incorporated into a piece of legislation that will be passed in this Session? If in fact, as we read in many newspapers and in other media, it is unlikely to be adopted, I therefore address a question to my noble friend the Minister: why are we permitting more time to be given to a pointless exercise, when the country can ill afford to be spending money on pursuing legislation that will never be implemented?
My Lords, I have four amendments in this group. Two of them cover ground already explored by other noble Lords, so I will not go over that ground again. We will simply address two of them, Amendments 540A and 862C. I will deal with the latter amendment first. Amendment 862C relates in subject matter to Amendment 459A, which the noble and learned Lord, Lord Falconer, described to noble Lords a few moments ago, and which he tabled in response to the concerns of the Delegated Powers Committee. As others have said, that is very welcome. My amendment seeks to ensure that the regulation-making power in Clause 22 is subject to the affirmative resolution procedure. After all, that is a more exacting procedure, and I would have thought it was appropriate. If the noble and learned Lord thinks it is not, perhaps he would like to explain why when he responds to this debate. Amendment 540A concerns a matter raised earlier in the debate by the noble Baroness, Lady Cass: training. The impact assessment refers to training for healthcare professionals and sets out three levels: tiers 1, 2 and 3. Tier 1 is “a 90-minute e-learning module and a 60-minute online interactive session with a facilitator”. That is the lowest level, and then there is tier 2. Tier 3 is “an advanced two-day in-person training package, aimed at staff who are likely to lead the VAD service and act as the coordinating doctor”. I would be grateful if the noble and learned Lord could answer this when he responds: given the...
My Lords, I am grateful to the noble and learned Lord for setting out his new Amendments 548A and 549A, recognising and being positive about the feedback on trying to put something somewhat more detailed in the Bill. I tabled Amendment 549B because aspects of Amendment 549A were starting to worry me. I appreciate that I might be in a different place to many noble Lords on this issue, but I fear that we might start to overcomplicate what is needed in the role of an independent advocate. One reason I put my amendment in is that, if you can do more than 10 a year, I am somewhat worried that this will become almost a new industry, with people undertaking roles solely on this. I am concerned about training and regulation, and I am conscious that the whole purpose of this was to address people’s concerns. The conditions set out the reasons why somebody may have an independent advocate, which happens in general life but was intended to be somewhat of a safeguard for a person applying and going to see the doctor face to face-although we have previously discussed issues to do with being face to face. But I fear that we might be somewhat complicating what the role of the independent advocate will start to become. So my amendment to Amendment 549A, Amendment 549B, seeks to get a sense of what this role really is and who will fulfil it. Amendment 549C is pretty straightforward. I do not think there was anything ill intentioned here, but the Table Office said that it did not catch the...
My Lords, I had an amendment in this group but I withdrew it when I saw that other noble Lords had tabled an amendment that was superior to mine. So I rise to support some of their amendments and to express my concern about the new clauses proposed by the noble and learned Lord, Lord Falconer. I agree with my noble friend Lord Gove that, with a sense of decency and integrity, the noble and learned Lord has sought to bring forward a new clause that is superior to the old one. Nevertheless, I feel it falls short of what is required to protect the most vulnerable people who need assisted dying. The new clause presents the independent advocate as a safeguard: a final protective layer for those who may be isolated, frail or at risk of coercion. But, when one examines the detail and listens to the evidence from those who work daily with vulnerable adults, it becomes clear that these clauses are a bit inadequate and underpowered, and I feel that they are structurally incapable of doing the job that Parliament has been told they will do. The first fundamental question concerns the advocate envisaged in these clauses not being genuinely independent. The Bill allows the advocate to be appointed by the very system that is processing the assisted dying application. That is not independence; it is administrative proximity dressed up as protection. Those who work in safeguarding repeatedly warn that advocates must be structurally separate from the decision-making machinery, yet these...
My Lords, this is a very interesting group of amendments, because it seems to me that two separate things are going on. We have the neutral adviser of the noble Lord, Lord Frost, who, unfortunately, arrived too late to be able to speak to his own amendments-though they have been spoken to-and the other is the independent advocates. I share some of the concerns about the amendments tabled by my noble friend Lady Grey-Thompson, but I also have some about the amendments that the noble and learned Lord, the Bill’s sponsor, has already spoken to, whereas those proposed by the noble Lord, Lord Goodman, certainly seem to fulfil an important role and have a narrower scope. If I might talk briefly about the neutral advisers, that role seems compatible with the scheme that I outlined last week at the beginning of proceedings. Those amendments have been very well introduced, particularly by the noble Lord, Lord Gove, who spoke about that role and the importance of neutral advice. I turn to the independent advocates. The intention is obviously that disabled people and those with learning difficulties are supported through a very challenging process and time in their life. However, there is a risk that these independent advocates become enablers who function a little like the sweepers in curling: sweeping away blocks and smoothing people’s passage towards an assisted death. The advocates must be advocates for the patients, not advocates for assisted suicide. Given the way that the...
My Lords, I shall touch briefly on two points prompted by both the noble Baroness, Lady Finlay of Llandaff, and my noble friend Lord Blencathra. In a sense they are a challenge to the sponsor, the noble and learned Lord. I think I am right in saying that he was a lot more definitive in his language in the Committee proceedings last week on 13 March about the need for the independent advocate to be present during discussions with the individual seeking to access the service. His Amendment 549A is more opaque in its language and does not specify that. Given the discussions that we had, particularly last week, about the power imbalance between someone who is less confident, less well-educated-a power imbalance between the decision-maker and the person accessing the service-it is an imperative that the independent advocate attends and is present to challenge some of the assumptions or decisions that are being made. I want also to consolidate a point raised by my noble friend about training. The noble and learned Lord will know, as he and others have lauded the system in Victoria, Australia, that the training provided around the specific issue of coercion is very limited at tier 1. He has potentially missed an opportunity to focus in on training. If you had an in-person independent advocate and poor training, that would not be great, but you would at least have someone attending. Instead, you have a situation of inadequate training and someone not attending in person. It may be...
My Lords, we have focused in this debate on the role of the independent advocate, but of course many of the underlying concerns arise with regard to protections for various vulnerable groups and people in situations that expose them to coercion or abuse. It is clear that the text of the Bill as drafted does not specifically address protections for groups such as those with Down syndrome or those subject to coercion. In fairness to the noble and learned Lord, Lord Falconer of Thoroton, he could reasonably argue that the drafting of the Bill should be wide enough to encompass all of these groups on a generic basis without specifically referencing them. If the Bill is drafted with too much specificity, almost certainly somebody will be left out and we would have to come back at a later stage. That is presumably why the noble and learned Lord has introduced his regulation-making power in Amendment 549A, which I will come back to in a moment. That said, I would suggest that it is not enough just to say that the drafting of the Bill is broad and that, therefore, we cannot debate its impact on specific vulnerable groups. I would be interested if the Minister could take time in her response to set out how the Government have taken into account the specific needs of the groups mentioned in the various amendments. That seems to me to be part of the work to deal with the practicalities of implementing the Bill. How, for example, in practice does a person with Down syndrome who might...
I just wanted to stress, particularly for Hansard , that the people we are talking about are ultimately going to die from the illness they have had. Therefore, when the noble Lord has referred to them not wanting to die, he means that they do not want an assisted death.
We all know what we are talking about here, but yes, absolutely. This all goes back to the fundamental point of the Bill. I am addressing this point because the hypothesis is that the person has less than six months to live but, notwithstanding that, we are making sure that this particular group of people have an independent advocate. My point is simply that, if we are going to go down this road, there needs to be consistency: if they are not going to have an independent advocate, they really need to confirm it rather than merely indicate it. I apologise for my slightly loose language; the noble Baroness was quite right to pick me up on that. I hope the noble and learned Lord will consider my point as to whether “indicating” is actually the right test in subsection (2)(b)(ii) of his proposed new clause.
I am most grateful to noble Lords for their contributions to this debate on independent advocates. I will limit my comments to those amendments on which the Government have major legal, technical or operational workability concerns. I turn first to Amendments 168, 300 and 553, tabled by the noble Baroness, Lady Grey-Thompson. Without further consequential changes, Amendment 168 would result in an internal inconsistency with the framework currently set out in the Bill, which provides an independent advocate only for certain qualifying persons. Similar concerns arise with Amendment 300, which seeks to establish a new system of advocates for disabled people. It is important to note-not just in reference to these amendments, which I heard the noble Baroness acknowledge are not quite as she might wish them to be, but in relation to the debate-that the Equality Act 2010 definition of disability is very broad. For example, it includes those with cancer. As a result, most people who are terminally ill for the purposes of the Bill would fall within that definition. That means that the amendment could apply to the majority of those seeking an assisted death. Amendment 300 would require the independent advocate to confirm that the person has been offered “all practicable social, medical, and palliative supports which are financially supported”. However, there is no provision to ensure that the independent advocate would have access to the information needed to confirm this, which could...
Amendment 197 would require the commissioner to publish an online public register of neutral advisers, and all declarations made and advice given. Publishing information about those willing to act as neutral advisers for assisted dying may give rise to Article 8 ECHR issues. It would need to be objectively and reasonably justified in order to be ECHR compliant.
On the points raised particularly by the noble Lords, Lord McCrea and Lord Wolfson, I have previously written to noble Lords about the Government’s position on implementation to outline the position of the National Health Service in respect of the Bill, should it become law. Copies of those letters are in the Library.
I also add, in summary, that, by definition, no decisions have been made about delivery models. There is no implementation plan or funding committed, as noble Lords have heard previously, nor would it be right to do so in advance of a Bill becoming law and the details being confirmed. The noble Lords, Lord Gove and Lord Carlile, helpfully made these points earlier, for which I was grateful. I say to the noble Lord, Lord Wolfson, and to other noble Lords that, of course, if the Bill becomes law, the Government will absolutely have to consider how to maintain safeguards and protections, including for the vulnerable groups, many of which have been discussed today.
I say to my noble friend Lord Brooke that, as the Chief Whip makes clear prior to every sitting on the Bill, consideration of the Bill is a matter for Parliament, while scheduling is a matter for the Chief Whip. He has sought to be helpful to the will of Parliament.
I will make no other comments on the other amendments in the group, which have not had technical drafting support from officials. Therefore, further revision and corresponding amendments may be needed to provide consistent and coherent terminology throughout the Bill.
I am greatly obliged. I will go through the amendments but, before I start, it is clear, as I said when I introduced my amendment, that the purpose of the independent advocate is as set out in my Amendment 548A. The job of the independent advocate is to “represent and support a qualifying person in connection with … understanding the options available to the qualifying person as regards end of life care, or … anything done under this Act, by or in relation to the qualifying person”. Just to answer the question from the noble Baroness, Lady O’Loan, as to what is meant by “anything done under this Act, by or in relation to the qualifying person”, the independent advocate can provide help on every aspect of it-for example, assisting in any representations that person wants to make or getting in touch with somebody that the person wants to help them make a decision. It does not envisage assistance in the last act, which is taking the substance, because it is clear in the clause that that needs to be done by the person alone. The following words, “anything done under this Act, by or in relation to the qualifying person”, are used in addition to “understanding the options” because, whenever someone is going through a process, they may well understand it, but they may want help with, for example, preparing documents, filling in forms or working out whom they need further advice from. That is the relationship there. I also echo what the noble Baroness, Lady Cass, said: the purpose...
Can the noble and learned Lord clarify the support? If the lethal drugs are there and the person feels that they cannot take them in the form that they are presented, is the independent advocate to be involved in any alteration of the preparation, such as crushing tablets or heating up substances that might make it easier for them to be swallowed?
Absolutely not. Indeed, the way the Bill is drafted makes it absolutely clear that the independent advocate is there to assist in the process of obtaining the consents and making sure that the person, as they go through that process, understands the whole process. The people to whom the amendment seeks to provide the assistance of an independent advocate are defined specifically as people with a mental disorder under the Mental Health Act or people, as I have gone through already, with particular difficulties understanding, communicating or using or weighing that information. I will pick up the point that the noble Baroness, Lady Cass, raised: if someone has a difficulty in understanding or retaining information, it cannot be envisaged that they would have a firm and settled view. I broadly share that view-but remember that the independent advocate comes right at the beginning of the process. If there are question marks in people’s minds, people should have an independent advocate. It may very well be that, if someone cannot understand relevant information, they cannot possibly have a clear and settled view. I do not think that they should be deprived of somebody to help them through the process right from beginning. That is why the range is there-because it takes place right from the beginning. I also express gratitude to the noble Baroness, Lady Cass, for broadly supporting the approach that we have taken on the words “independent advocate”. I will go through the...
Say we have a medical practitioner who does not, for the reasons the noble and learned Lord has given, want to discuss this. What is to make sure that the person, the organisation or whatever it is, the vague entity under the Bill, to which the person will then be referred, is not part of a, if you like, mafia of employees-because it does not necessarily have to be a doctor to whom the person is referred-who are in the vanguard of protagonists of assisted dying? This is the concern that that seeks to deal with in a state service.
What I understand the noble Baroness to be saying is that a doctor who will not conduct the conversation because, for example, he or she is against it on conscience grounds, might refer somebody to what she describes as a pro-assisted dying mafia. First, that seems to me to be unlikely. Secondly, the Bill cannot prevent people talking to anybody they like about assisted dying. We have free speech in this country. Thirdly, the Bill provides that before you can have an assisted death, you have to have a Clause 5 conversation, which requires the doctor-legally-to put every option before you. What is being proposed is a network of neutral advisers to ensure that before you get to the second Clause 5 doctor, you have not talked to somebody who might be pro it, who you are not prevented from talking to anyway by the law. No, I am not in favour of it.
I thank all noble Lords for the debate this afternoon and the noble and learned Lord for explaining his amendments. I think the answer to the problem that we are trying to solve is somewhere in the middle of this group of amendments. I still have a level of concern about whether an individual knows what they are saying yes or no to with the independent advocate and their understanding of the information that they are given. I would be very concerned if it turned into some sort of tick-box compliance in terms of someone’s understanding. I thank the noble Baroness for her confirmation that, under the Equality Act, someone with cancer or leukaemia would count as being disabled. It was not my original intention for everybody who wanted to enter this process to have somebody independent alongside them.
The noble Lord, Lord Wolfson, highlighted clearly the crossover between this group and the earlier group that we debated today on communication and language barriers. It is from listening to the debate that I think the answer is somewhere in the middle. If somebody chooses to enter this process, and if it were more tightly defined, what if they did want somebody independent who they could discuss this with? In previous debates, the noble and learned Lord and the Member for Batley and Spen in another place have said that the only coercion would be from a family member not wanting their loved one to enter the process. I am feeling more convinced that somebody of an independent nature may be required, because if the individual does not feel that they have anyone to talk to then they might end up being slightly lost in the system.
The noble Lord, Lord Jackson, raised coercion training, which is an important part of this. In Australia, the coercion training is a video of less than three minutes. In Victoria, the navigator was created by the health board, but was not that clearly defined. There is something that we can learn from the situation in Australia, where the Victoria model has now been replicated throughout. The role of the navigator, much like we debated in earlier groups, is to source the doctors who would be able to perform the process. I certainly do not see that as something positive, but we need somebody who can be calm, give sensible and independent advice, and help people. These are really big decisions that somebody is taking.
I thank the noble Baroness, Lady Hayter, for her question on my Amendment 533. As I said, I tabled all my amendments before the start of Committee. We debated this area in another group, but I chose to keep Amendment 533 in this group because I felt it sat better here. My Amendment 547 relates to people with Down syndrome, and Amendment 300 relates to disabled people with support needs. I very much saw Amendment 533 as sitting alongside those. I agree that I could have worded it better and been more explicit, but that is why I did not move it to a different group.
Baroness Hayter of Kentish Town
I therefore understand that the noble Baroness does not mean this for everybody, but only for people in a restricted category.
In the context of this amendment, I meant it in a restricted category. I did not want to start withdrawing amendments and retabling them, because, in Committee, I think it is useful to explore such issues. I am not sure for anyone reading the Marshalled List on the outside-for any who do-that it is terribly helpful to see that amendments have been withdrawn. It has been a really useful discussion to have in Committee. I thank my noble friend Lady Cass for raising the issue of remembering information, and I thank my noble friend Lady Finlay of Llandaff for bringing in a sporting analogy. I was thinking about the work that I do outside this Bill, and over the years I have done a lot of work on concussion protocols. In the early years, when concussion protocols in sport were brought in to help make sure that people did not carry on playing rugby or other sports while concussed, there was a lot of coaching going on because the same questions were asked through the concussion protocols: do you know what day it is?; do you know who the monarch is? The answers were learned. In that moment, people might not have been able to answer the question but they had learned the answers. The point raised by my noble friend Lady Cass is something else that we need to think clearly about. Another area I work in is anti-doping in sports. We now have a new system. It used to be that the governing body of the sport would take tests from the athletes and then, if there was an adverse finding, do...
Amendment 168 withdrawn.
Amendments 169 to 174A not moved.
Amendment 175
Moved by
175: Clause 5, page 3, line 21, at end insert- “(aa) where the prognosis is based on a median life expectancy, the distribution of the data underlying the prognosis;”Member's explanatory statement This amendment requires the registered medical practitioner to discuss the underlying data on survival from which the median prognosis has been calculated
My Lords, I will speak to Amendments 175 and 384, in my name, and I am grateful to the noble Baroness, Lady Fox of Buckley, for her support. These amendments concern prognosis. We have discussed prognosis briefly in previous debates, but I wanted to raise this in the context of my own experience of cancer and to bring some sort of mathematical thinking to bear on the question. In August 2023, I was diagnosed with stage 4 oesophageal cancer. It was a fatal diagnosis and I was told that I had 12 months to live-18 months, if the character of my tumour qualified for immunotherapy, which it did. I do not need to be congratulated on being particularly brave for sharing this story, since noble Lords will hear, if they stick around, that the story has a happy ending. Within a week or so of that diagnosis, a friend of mine sent me an article which had been written in 1991 by Professor Stephen Jay Gould of Harvard University. Professor Gould was an evolutionary biologist, and he was quite well known because he wrote a number of popularising science books-the sort of thing that sixth-formers and undergraduates would have read widely. He was a well-known and liked figure. The article was about his story. In 1982, he had been diagnosed with abdominal mesothelioma, a fatal condition, and the hospital would not give him a prognosis. When he got back to Harvard, he went straight to the medical library, and he found on reviewing the literature that he had eight months to live. After about 15...
My Lords, what the noble Lord says and the article that he cites are very interesting. I am jolly glad that, for some people who have positive attitudes, they live a long time with their cancer. I know from personal circumstances, as do many other people around this Chamber, that we have had loved ones who have had very positive attitudes towards their cancer and they have died.
My Lords, I am not saying-nor was anybody-that a positive attitude on its own is going to save somebody from cancer. Professor Gould also benefited from the fact that he had the best medical treatment, and he went on various experimental courses. That was not my point at all. But people with a positive attitude, as I quoted, tend to live longer. I think that is scientifically demonstrable. I am surprised at the noble Baroness’s intervention. I think we can learn some lessons from this. First, prognoses are not generally individuated. They are medians drawn from large data sets based on clinical trials. As Professor Gould said, if you get a prognosis of six months, the average person will think that means that they are going to be dead in six months, which, from a scientific point of view, is precisely the wrong conclusion. Secondly, even when a prognosis is not based on a median but is an attempt by a doctor to give an individual assessment, it is very likely to be wrong. There are well-established studies on this. I will cite just one, which is Orlovic et al in 2023. It shows that, beyond 14 days, a clinician’s prognosis is almost always wrong. It is extremely unreliable. Within that shorter period of a week or two, a doctor and indeed an experienced nurse can very often say, with great reliability, that somebody is not going to last very much longer. But beyond that, an individual prognosis is of very little value indeed. I think we all accept that for anyone who gets a...
We have discussed this issue at some length before, but I wonder if the noble Lord, Lord Moylan, has considered that the Bill does not say anything about a definite diagnosis. The phrase is “can reasonably be expected”. It does not mean that anybody has to agree with a diagnosis that it will be four, five or six months, or any particular time; it is “can reasonably be expected”. I would like to come back on the noble Lord’s issue about people with a positive attitude. Does he accept that it is not just people with a very positive attitude who have good expectations? There are now numerous studies of people with breast cancer showing that the alternative, to totally deny it, also has a slightly better prognosis. There are different ways of approaching these bad news prognoses and people can adapt their own way of dealing with issues from them. I hope he will note that.
I am now precluded from taking further interventions, because there is a limit on how long I can speak and that was a very excessive intervention. I will discuss with the noble Baroness outside the Chamber what a reasonable expectation is, if it is not based on a prognosis. I do not know what the functional difference is. As for being in denial, funnily enough, an oncologist said to me that being a bit in denial is quite a good thing. In my own case, I managed to combine a positive attitude and a certain sense of denial; I agree that these things can work. It is quite complicated. But none the less, I am going to continue with what I wanted to say. Thirdly, the title of Professor Gould’s article was, quite subtly, The Median I sn ’ t the Message . Yet at the heart of the Bill is a six-month prognosis-we may call it a reasonable expectation-in which that is exactly the message. It is that flawed message which we are making the heart of the Bill. Lastly, I think we are all agreed that a positive attitude can help, even if denial can help as well, but in using this Bill, we do not inculcate a positive attitude. What we actually say is: “You have six months to live and here is the pills option. That’s another option you can take”. We should be promoting a positive attitude, and the Bill does not do that. My Amendments 175 and 384 simply require that in the three doctor encounters that are required-in the preliminary discussion, with the co-ordinating doctor and with the...
My Lords, “All’s Well That Ends Well”, and it is always a pleasure to follow such a story, particularly as it is the story of someone who told it to your Lordships himself. I put my name to the noble Lord’s amendment and intend to address it not from the viewpoint of positivity and negativity-I tend to view that as mostly potluck- but from the viewpoint of facts. The fact I start with is an assumption: that everybody who is given a prognosis by his or her doctor desires to make an informed decision and, if they wish to make such an informed decision, that it should be based on some factual and scientific basis. All that these amendments would do -I speak not particularly to their very words but to their meaning-is require that a doctor or any other clinician who is giving a prognosis should do so on a solid medical and scientific basis: a prognosis that is founded in medicine, not stories and the last three patients they happen to have seen who had a serious illness. I have spent a lot of time in recent weeks reading articles. There are some amazing American articles in which huge statistical samples are taken, but on this subject they all come to a similar position. For example, in one major study, only about 20% of predictions of six-month deaths were within a close range at all of ultimate survival. This is a very unscientific part of what clinicians tell their patients. Judging the moment of death becomes very difficult the further you are away from the actual death, but...
Baroness Hayter of Kentish Town
My Lords, I am pleased that the noble Lord who moved the amendment is in remission from his cancer. On other Bills we wish he was in remission from his political views, but on this one we celebrate with him. I used to run a cancer charity, and the truth is that on this issue not everyone is using statistics. Doctors are often using their eyes; when we are talking about the last weeks it is their eyes, rather than going to any statistical table, that will tell them. There is an assumption that all this is going to be based statistically on the six-month period, but it is not like that. My own guess is that most people who are dying will probably start thinking about this only at three months. Tonight I am going to be dining with a recent widower. His wife-a very well-known author but it does not matter who she was-had cancer. She fought it, but fighting it is not enough. It was only really in the last weeks that she realised that what she wanted was help in those weeks. It was at that point that she tried to get to Switzerland, but by then it was too late. My judgment is that much of this, for many of the patients who will be asking for this, will be very much towards the end. I will be surprised if at that point the doctor is going to their statistical tables, because at that stage the patient’s age and underlying health and other factors will contribute as much to assessing whether it is going to be days, weeks or maybe a month as the particular type of cancer that they...
My Lords, it is hard to follow the noble Lords, Lord Moylan and Lord Carlile, whose contributions were made with such panache, wit and insight. What really intimidated me was the noble Lord, Lord Moylan, saying, “This amendment is all about understanding the mathematics”. I thought, “Oh God, I’ve put my name to it. There’s been a terrible error”. I bring absolutely no mathematical understanding to the question. I put my name to the amendment on the requirement that medical practitioners should discuss underlying data on survival-in terms of the median prognosis of six months and how it is calculated and so on-because I am interested in ensuring that there is maximum transparency for patients under the Bill, so that any choice that they make is well informed. The Bill rightly requires that an applicant for assisted dying is informed, so it seems obvious that being informed should include an understanding of the context of the data and the reliability of a prognosis, which would help them to inform themselves.
If we accept the Bill’s criterion of having a terminal illness with six months to live, I do not think, despite what the noble Baroness, Lady Hayter, said, that you can see it with your eyes. At the moment, I have a terrible cough and cold. If you look through my eyes, I look like death warmed up. I do not think that that is good enough. It is, I hope, a bad way of judging one’s longevity.
There is some basis on which a prognosis is made. Doctors can see the tumours. They know that you have an illness and they are making a point. The point is that prognosis based on median life expectancy is highly uncertain. It is only right that applicants should be informed of the limitations and the uncertainty of the underlying data behind such estimates.
As anyone here who has faced a terminal diagnosis will know-it seems that many have and have lived to tell the tale-and as many noble Lords will know from friends and family, the first thing that a patient asks when they are told that the condition is incurable is, “How long?” It is usually hard to get a precise answer out of a doctor. The patient wants to know how long because they want to know the worst in order to arrange their affairs-financial or personal-and to work out how to spend the end of their life. The doctors can eventually be cajoled into giving a timescale, often reluctantly. When they do, it is usually to help a patient to organise their affairs, sometimes giving them a timescale so that they can access benefits or care support. I am concerned that the Bill will encourage a sense of six-month certainty-more definitive time-limit answers with fewer caveats. Doctors will think, “If I say six months, the patient will get access to services, but they might not if I am vaguer and say that I don’t know”.
While the Bill’s use of a six-month prognosis as reasonably assessed by doctors implies that there is a simple calculation that can supply estimated life expectancy, prognosis is not, as we have previously discussed, an exact science. My concern, which follows on from the discussion that we had last week about the power imbalance between doctors and patients and the deference shown to medical experts by many people sitting in that doctor’s surgery or in the hospital, is that, when a patient hears a doctor say, “Six months”, they may assume that that is an absolute scientific certainty. The fact that there is a vast range of possible trajectories is not something that I think the patient will work out unless they are explicitly told it, which is why I like these amendments.
This is about ensuring that patients have a chance to understand how widely varying their future might be and that clinical predictions of life expectancy show wide variability, depending on the condition that they have or the method that has been used to calculate it. For example, I think it is important that female patients are told that women with terminal cancer tend to survive longer than men, yet prognoses are rarely disaggregated by sex. Tell women-“That’ll cheer you up”-but maybe do not tell the men.
Patients need to know that a prognosis is especially likely to be wrong with poorly researched conditions such as cancer in younger adults or MND. It was shocking to me to discover that, in Canada, most people with MND now die by MAID-assisted death. The natural progression of the disease is very hard to predict, yet people are given assisted death. How would you know, given that we are only just finding out that people can live years longer than the doctors had originally thought?
One key point is that modern treatments and medical breakthroughs can also make forecasting with accuracy more hazardous. There is a lot of cystic fibrosis in my family. Those close relatives doomed as having this life-limiting condition have, wonderfully, survived far longer than anyone thought they would. They were told they would not survive but they have, because new drugs and treatments have had miracle impacts on life expectancy. Is that not something to celebrate? Nobody thought it was true. We just thought that they would not make it.
Look at the miraculous efficacy of immunotherapy in taking on stage 4 cancer, as evidenced by the noble Lord, Lord Moylan. Similarly, some patients undergo treatment as part of palliative care administered to them for a terminal illness-probably on the basis that they have about six months to live-with the intention of improving their quality of life but with no expectation of cure. They are still terminally ill, but some patients-we all know people like this-respond much better than expected and have the length and quality of their life extended beyond expectation. That is a precious bonus.
Patients should be told of those possibilities when they go in, because otherwise they might despair. At the very least, patients need to know this sort of granular detail and that there are possibilities, rather than getting a stone-cold, “You’ve got six months”, upon which they immediately think of all the worst things that could happen and maybe therefore make a decision that is literally fatal.
This is not about selling false hope. Some may die naturally before the six-month red line. Others may not, and they need to know that, or the consequences could, as I said, be unnecessary and bring about a premature death based on despair or false information.
Finally, oncologist Professor Chris Parker, from the Royal Marsden, said:
“I have little doubt that some patients would choose assisted suicide if it was legal, because they were told they had less than six months to live, but in truth, if they had not had assisted suicide, would have lived for years and enjoyed a good quality of life, because I’ve seen patients like that”.
We should not allow the Bill’s six-month prognosis to become, in effect, an early death sentence. Patients do not know that the odds are not definitive and are sold misinformation by being told, “You’ve got six months to live”, when it is a bit more complicated than that.
My Lords, we have already had extensive discussion about the multidisciplinary team involvement. In 50 years of nursing-not all in clinical-I have never heard a doctor come out with, “You’ve definitely got six months to live”. There are much more subtle conversations. I accept that people with MAID sometimes want to discuss it and say, “If I come off the support that you’re giving me, how long would I live?” Some of the answers can be very straightforward and we still enable patients to stop treatment when they want to. I am also delighted that the noble Lord is alive and that he clearly understands statistical formulae.
I just want to ask the noble Baroness for one clarification. I agree that most doctors are not brutal and do not say, “You’ve got six months and that’s it”. I asked whether the Bill, which requires you to have a six-month prognosis to access the service, will encourage doctors to feel that they have to be more definitive to allow people to access this service.
I do not think so. I have greater faith in the medical profession and the multidisciplinary team.
My Lords, I want to make a few points following the contribution from the noble Baroness, Lady Fox. First, she referred to MND and the problem with some people who appear to live quite a lot longer than expected. The real problem with MND is that these patients almost certainly will not qualify to be classified as terminally ill under the Bill. The speed of progression of the disease usually means that getting a six-month diagnosis is almost impossible, so motor neurone disease patients will find it very difficult to fit themselves within this. This is, I think, widely acknowledged. Secondly, all this discussion has been based on the prognosis given by a doctor to his patient. The Bill requires it to be established that the individual is terminally ill for assisted dying to be available. That decision must be made by the first doctor, the second doctor and the panel. These are not doctors giving informal indications to their patients about the amount of time they may have left to live; these are people having to come to a professional judgment. Of course, if they cannot agree on that professional judgment, the decision will not be that an assisted death can be given. It seems that, in the context in which the prognosis is given-that is, to satisfy the definition of “terminally ill” in this Bill-there are many safeguards that would mean that we have a relatively safe definition of six months by the time all those who are involved in the process agree it.
My Lords, on the point made by the noble Baroness, Lady Noakes, the person or people who will make the best judgment about prognosis will be the treating team: the treating doctor and the multiprofessional team. I have always been somewhat dubious about how much those successive doctors can add to prognosis, as they will not be specialists in the area. I just make that point. I am always gratified but slightly alarmed at the faith that noble Lords place in doctors. It was not always what I experienced in practice, when many of my patients arrived with an internet search knowing more than I did about the condition, especially as I worked somewhere where we often saw young people with rare disorders. A number of things are getting conflated in this debate. When a previously young, fit person walks through the door with a cancer diagnosis, there will be a series of trials and data on the prognosis for that age group with that diagnosis. Then it narrows down as there are the specific features for that individual. Then they start treatment and, as the treatment goes along, your prognosis gets more individualised as they do or do not respond to the treatments they are being given. Ultimately, it may become clear to the treating team that that person is no longer responding to treatments, and it becomes a very individualised prognosis at that point. So although you may start off with statistics, which are very broad, you end up giving the best advice about what you see before your...
I am most grateful to my noble friend Lady Cass for that introduction. This debate is extremely serious. Sometimes there has almost been black humour during it, but people have had devastating experiences and that is often what has brought them to this position. I am grateful to the noble Baroness, Lady Royall, for intervening earlier because there are people who are desperate to live and suddenly deteriorate, and there are others who are quite resigned to dying and carry on living for quite a time. It is very variable. I also thank the noble Baroness, Lady Noakes, for flagging up the specific issue of motor neurone disease, because the disease trajectory is the important factor that will give you an indication. The problem is that although cancer is probably in some ways easier than most other conditions, motor neurone disease is incredibly variable, just as MS is, with dips and troughs and times that are much better and intercurrent infections, each one of which might be fatal. I remind the Committee that when we discussed this previously, I stressed that I wanted amendments about the progression of the disease-the disease trajectory. Those amendments were rejected, but I still think that they might solve the problem slightly better. I remind the Committee of the wise words of the noble Lord, Lord Wolfson, when he summed up the previous group of amendments. I will not go over that again, but he really got to the point about the impossibility when patients want to know...
My Lords, as usual, I came to listen and not to speak, but there are a couple of things that have been said to which I want to react. I agree entirely with my noble friend Lady Hayter, to be honest. I will not go into the details, but I lost my first wife before the internet. There were no internet searches at all, because it was so long ago. We could work it out. It kept coming back in half the time-three years, 18 months. She was still at work-no problem there-managing a college in south London. It was coming back in half the time, so it was fairly obvious that you could measure it. We did not do it like that, and it was only later that we worked out that it came back in half the time. When I went through it, I had no warning at all. I say to the noble Lord, Lord Moylan, that there was a consultant who had looked after me since the beginning, when I had no warning. About four years after I finished chemo-she was going off somewhere else to do research, so I was not going to see her again-she said to me, “You have to remember that the drugs deal with only half the problem”. That made me very satisfied. On the other hand, I have gone through cases involving people who were as positive or more positive than I was, but it got them in the end. That is what I remember. The drugs deal with only half the problem.
On the thrust of the argument, I agree with the noble Lord, Lord Moylan, that approaching this probabilistically, rather than with a single number, clearly makes sense. It is wonderful to hear the impact that these new immunotherapies have had in his own personal case as well as for oesophageal cancer. Just for the record, I want to associate myself with the comments of the noble Baroness, Lady Royall, because the evidence is pretty clear that there is not an association between positive thinking and cancer survival. There may be a link with quality of life, but frankly, it is perfectly normal, having had a cancer diagnosis, for people to feel depressed or anxious. The only reason for raising this very briefly at this point is that we need to be very sensitive. When somebody’s cancer progresses and ultimately kills them, we should not be leaving the impression that we think that is because they lacked the positive attitude that would in some way have enabled them to survive. I know that is not what the noble Lord was suggesting, but just for the record, I think that the noble Baroness, Lady Royall, was right to draw that to our attention, and we should be clear about that.
To add to what the noble Lord, Lord Stevens, said, I very much dislike the death notices, for example, which refer to people having put up a great fight or having failed to deal with the battle, or whatever expression is used, which suggests precisely what the noble Lord said-that they have somehow failed in a mortal combat.
My Lords, I only want to challenge the point that was made that the Bill suggests that six months is inevitable. It does not do that at all. In fact, all Clause 7 says is that if you go to the doctor, there will be a record of a preliminary discussion. It does not say anything else. Clause 8 refers to the initial request for assistance and first declaration. Where does the idea come from that the Bill somehow inevitably leads to a six-month progression? There is no such thing in it, other than the fact that the doctor is required by law to produce a written record of the preliminary discussion. In that preliminary discussion, he or she could raise a whole range of things, as we have heard from noble Baroness, Lady Cass, and a number of others.
We are all agreed that the reference to six months is to be found in Clause 2, where it says that “an inevitably progressive illness or disease which cannot be reversed by treatment, and … the person’s death in consequence of that illness or disease can reasonably be expected within six months”.
My Lords, I have always considered that the six months was critical to the essence of this Bill, because there has to be some point at which doctors say that you are likely to die. Misdiagnosis has been a problem. I recognise the remarks of the noble Baroness, Lady Murphy. We have discussed misdiagnosis before, but when we did, and it was then summed up by the noble and learned Lord, Lord Falconer, he airily said that perhaps some of these diagnoses of six months may be a little wrong and it could be more like eight months. What he failed to address was my noble friend Lord Polak, who was given six months to live. That was 32 years ago-and we are still counting. When you get things that badly wrong, you have to really question whether these diagnoses are going to be in any way meaningful at all. It seems to me that, if we have these tremendous variations, they totally undermine the whole essence of the Bill. We are saying that, if people have got only six months to live, they should apply for assisted dying, but it may be that they live for years afterwards.
Baroness Hayter of Kentish Town
I think the noble Lord meant to say that they could apply, not that they should apply.
All right-they could apply, if that helps the noble Baroness, Lady Hayter. We have to think closely about this, because this is the essence of the Bill. I do not understand how we can be comfortable with the whole idea that some of these diagnoses will be completely wrong and, as a result, there will be people who will apply for assisted dying who might have lived for years. This strikes me as being a disturbing element of the whole Bill. We should be seriously considering whether something should be done to address this problem. I am glad it is not my difficulty.
My Lords, my noble friend Lord Moylan and the noble Lord, Lord Carlile, have told us about the uncertainty of the statistical evidence, and indeed the unreliability. That points to a flaw at the heart of the Bill, for which a condition for eligibility is that death must be reasonably expected within six months in consequence of that illness. What then is at the heart of the Bill, if I may develop the point a bit, is a process for managing assisted suicide in consequence of something which is not at all certain. I have to say that, in the areas we know about where the state has a process for providing a service, particularly in education, we see that a state service is not geared to the individual case. One of the points that my noble friend Lord Moylan explained was the individual case, and most noble Lords agree with this. How are we going to have a state service, as is proposed by the sponsor’s Bill, for a general cohort, and not the specific individual case, that is reliable for individuals? We see in education and other areas that exceptions continue to have to be made-for instance, for children with special educational needs, particularly autistic children. These are exceptional cases which do not fit the general application of a state service.
My Lords, it is a hallmark of the noble Lord, Lord Moylan, to make valuable contributions to debates in your Lordships’ House, and today is no different. The noble Lord is living proof that an average, median or mean life expectancy is incredibly difficult to predict, as is the third standard deviation of the bell curve, which he rightly referenced. I believe that the noble Baroness, Lady Finlay, said that she never gives prognoses due to the complexity of the answer. Other noble Lords touched on the way a prognosis is calculated in previous debates. Taking such a monumental decision of life or death based on a medical prognosis derived from a median life expectancy raises questions. That said, it is difficult to see what other measure should be used as the test for eligibility.
Before I speak to my noble friend’s amendments specifically, allow me to add that not all illnesses and conditions will have the same range of life expectancy. When we discuss the median, we should also consider the range of the distribution. If one prognosis is based on a range of five to seven months, and another is based on one to 12 months, both result in a median prognosis of six months. But in one case, the patient has a significant chance of living well beyond six months. In that sense, not all median life expectancies are equal. That is where my noble friend’s amendment comes in. It may be that median life expectancy is the only workable test of eligibility that we are able to place on the statute book. But in using this test, it should be made clear to patients what both their prognosis and their eligibility mean.
The noble Lord, Lord Carlile, used a laser focus when he highlighted that just 20% of predictions of a death after six months were in range. Both the noble Lord, Lord Carlile, and the noble Baroness, Lady Fox, used the phrase “informed decision”. The noble Baroness, Lady Finlay, referenced it being clearly written down and clearly defined. Surely that is an important benchmark.
Can the Minister say whether an explanation of the differences between the two prognoses I have described will be given to the patient? How will that be required of doctors? Will it be set down in guidance, for example? How will we know that something of such materiality, yet potential ambiguity, will be communicated correctly? I hope the Minister will take that away if it has not already been considered by officials as part of their assessment. Did the noble and learned Lord, Lord Falconer, consider using any other prognosis-based eligibility test when the Bill was being drafted? This is clearly an issue that would merit further discussion, given the implications.
My Lords, I have noticed that the time now is 5.18 pm. We have no intention of moving on to another group. When this group is finished, I will seek to adjourn the House. I say to any colleagues waiting for another debate that it will not be happening this week.
My Lords, The Government do not have major workability concerns with Amendments 175 and 384, tabled by the noble Lord, Lord Moylan, whom we are very pleased to see in his place; long may he continue to be there. I will say a few words about clinical practice, which may be helpful in addressing some of the points raised, including those just now by the noble Earl, Lord Effingham. Most of the questions were really about the Bill and are therefore matters for the sponsor, but I will make a couple of points about clinical practice. It is rare for a clinician to base prognosis on a median life expectancy. In addition, explaining the data used is not common clinical practice. I hope that is helpful to noble Lords. The issues raised are rightly for noble Lords to consider and decide. Of course, that means that the way the amendments are currently drafted may require further consideration to be fully workable, effective or enforceable.
My Lords, can I share everybody’s genuine pleasure that the noble Lord, Lord Moylan, is here? Can I not congratulate him on telling us about it? I would have done, but he told me he did not want it, so I respect his wishes. I thank my noble friend Lord Rooker for being willing to share his experience of the death of his first wife. I also associate myself with my noble friend Lady Royall; from personal experience, one should not feel that one has got some obligation or is in some way defective if one dies quickly of cancer or takes a particular attitude. We should not be censorious one way or the other as to what attitude people take when confronted with a terminal illness. How would we all react when confronted with it? We probably do not know. First, we have had a debate about the six months, and I am incredibly unkeen to revisit the six months because I do not think that that was the frame within which the noble Lord, Lord Moylan, tabled his amendment. His amendment is about what is to be told to the patient rather than whether six months is right-I am gratified that the noble Lord, Lord Moylan, is nodding. I will focus on the issue: how should the patient be told? His amendment is in Clause 5, which is about the preliminary discussion. It requires the doctor conducting the preliminary discussion to discuss the person’s diagnosis and prognosis. It requires the doctor to refer to any treatment available to the patient, and the likely effect of the treatment, and it...
Does the noble and learned Lord recognise that, if the earlier part of the Bill and this clause had compatible wording over the progress and disease trajectory of that individual patient, that would make it easier for patients to make a decision and much easier for doctors having those conversations, whether it is the first conversation, the assessment or the independent doctor? It would also allow changes in medical science, which happen very rapidly, to mean that people were not stuck with the wording in the Bill. It would allow changes in information giving. So will the noble and learned Lord consider revisiting the word “prognosis” and clarifying it better in the Bill?
I did not quite understand the question, but I think the noble Baroness is going back to her amendments that we discussed previously about how you have to have regard to the progress of the disease. I think she is saying that you have to have the preliminary discussion, the first assessment and then the secondary assessment, and therefore you have time-I see the noble Baroness shaking her head, so perhaps she could raise it with me separately so that I understand it.
I would be delighted to raise it outside the Chamber; it was a little more complicated than those three points.
My Lords, before he vanishes, I thank the noble Lord, Lord Carlile of Berriew, and apologise to him for not acknowledging in my opening remarks the fact that he had added his name to my Amendment 175. I would be disappointed if the noble and learned Lord were, at this advanced stage of Committee, to agree to an amendment proposed to the Bill. He has not disappointed us; he has rejected it. The fact is that Clause 5 requires the discussion of prognosis, as he says. Any prognosis worth its salt has some data at the basis of it, and I am simply asking that that position-the spread of that data and the range, as my noble friend Lord Effingham referred to it-should be a part of that discussion so that people understand that, if they are told they have so many months to live, that is not a prediction but, in technical terms, a median based on underlying data. That data should be disclosed. This is an unusual debate for me because it is the only one in which I agree with everything that everybody-apart from the noble and learned Lord-has said. I even found myself agreeing with the noble Baroness, Lady Jay of Paddington, that the language of combat and struggle is really not appropriate for people who are suffering from cancer. I never use it myself and, although I quoted Professor Gould using it in my speech, it is not the natural language that I would propose. I agree with the noble Baroness, Lady Royall, that of course simply talking about positive attitude, and indeed...
The noble Baroness, Lady Finlay of Llandaff, said that it would be a great deal better if we did not have these amendments. I agree, but, again, in the context of this Bill, where six months is written in it and is an absolutely crucial key to allowing you through the door on the path to an assisted death, that is what makes things rather different.
I will say that, if all doctors behaved the same as the noble Baroness, Lady Finlay, and never gave a prognosis of any sort, the Bill would be a nullity because nobody would ever get to that base 1 to start the process. I am not sure whether that thought has entered the noble and learned Lord’s head or whether he is already thinking of amendments that might circumvent it.
I will leave things there and, with the agreement of the Committee, beg leave to withdraw my amendment.
Amendment 175 withdrawn.
Amendments 176 to 188A not moved.
House resumed.
House adjourned at 5.32 pm.