Live Debate: Lords Chamber

Lords Chamber

Friday 20th March 2026

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10:07

Legislation: Terminally Ill Adults (End of Life) Bill - committee stage (day 12)

Has Has to Has to be Has to be again Has to be again in Has to be again in committee Has to be again in committee on Has to be again in committee on the terminally ill adults end of life. Bill Lord Falconer of Thoroton. Bill Lord Falconer of Thoroton.

10:07

Lord Falconer of Thoroton (Labour)

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Move that the House do once again resolve itself into a committee on the bill.

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The question is that the House do now again resolve itself into a committee upon the Bill. As many as committee upon the Bill. As many as are of that opinion will say content. To the contrary, not

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content. The contents have it. My Lords, before we begin, I

10:08

Lord Kennedy of Southwark (Labour)

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will make my usual brief remarks. Firstly, I reiterate the thanks on behalf of the whole House to all behalf of the whole House to all staff across the House for supporting this sitting today. I know noble Lords were aware of the huge amount of work it takes to place takes place. Enable us to sit today. End of another long week and a very long late night on Wednesday. I will not repeat everything I've said before at length, but I should, as usual, remind noble Lord as usual, remind noble Lord Stoneham key points.

I will adjourn proceedings today at around 6 p.m. and in. Noble Lord, can of course seek to bring the debate to an end earlier by moving the motion to the House. Do not be now resumed. I hope we can conclude the group we are on when we finish at around 6 p.m. but if necessary, I will adjourn the house during the middle of the group. The clerks will compile a list of all noble Lords in attendance at that beginning, and noble Lords will be able to check there at the table with.

Their names being recorded properly. Only those present at the start of the start of the group can participate. When we. When the adjourn debate begins on the next committee day. It is now easier that we all work together to ensure we complete the group we are on and to get close to rising time rather than having to break mid group. My noble friend Lord Falconer of Thoroton has set a target for today's Committee stage. As I've said before, I hope that with discipline and the usual courtesies, we will progress towards the target.

The whips will facilitate a short 40 minute break lunch break at a convenient point around 1 p.m. to assist everyone. For general guidance on how Lords should conduct themselves, I highly recommend the companion in particular, paragraphs 4.29 on page 60 and paragraphs 8.81 and 8.82 on page 103. Finally, my Lords, I am very conscious that next week is the final week before the Easter recess. A noble order due a well earned break. I therefore decided the next Friday I will seek to adjourn the house at around 3 p.m.

rather than 6 p.m. Hope that helps noble Lords with travel planning. With that, I think we should move on to the business.

10:10

Amendment:165 Baroness Coffey (Conservative)

10:20

Deputy Chair of Committees. Baroness Morgan of Drefelin (Labour)

and therefore, I beg to move 165. >> Amendment proposed clause five,

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Amendment proposed clause five, page three, line 11 leave out or Wales.

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Wales. My Lords, I rise to speak to my amendments in this group. amendments in this group. Amendments 844, 903 and 905. However, I would first like to turn the House's attention to the LCM debate, just as the noble Baroness, Lady Kofi did, that took place in the Senate on February 24th. At the beginning of the debate, Jeremy Miles, the Cabinet Secretary for Health and Social Care, set out to the CNO. 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

10:21

Baroness Smith of Llanfaes (Plaid Cymru)

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the Bill. That would mean the law in England and Wales were changed to permit assisted dying. But there to permit assisted dying. But there be no powers in the Bill for Welsh Ministers to implement assisted dying services in Wales, or to oversee or to regulate such services. And I think that clarification is important for the House and throughout the debate, many MPs stated dissatisfaction on many MPs stated dissatisfaction on how the Senedd was being treated and I do apologise. I am going to quote several M's today because I think it's important that they're heard here.

We're being asked to vote in the dark. We're being asked to sign a blank check. We're legislating with a blindfold over our eyes. This is no way to treat a parliament, and this is no way to treat a nation. My Lords, the Senedd was in an impossible situation by this Parliament. A vote against this LCM would result in assisted dying services available only privately, and a vote in favour at least retains some power for the Senate to shape, such as services through the NHS and Wales.

And that was what the vote was about. Specifically, I

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thought this was concisely put. Oh yes, I. I do beg your pardon, my friend.

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I do beg your pardon, my friend. The reason that the Senate were was voting in the dark was because this voting in the dark was because this bill had not reached its conclusion in the House of Lords. If it had in the House of Lords. If it had have done, then there would have been. They would have been legislating in the daylight.

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legislating in the daylight. I thank. I thank the noble Baroness for her intervention. However, that is not not the case in terms of the practical reason why the Senate members raised those points. It is also in relation to the fact that they did pass an amendment to the Salcia, which I was likely going to touch on, which does state that the Senedd regrets that this Parliament hasn't properly considered the constitutional implications for Wales of this bill, and I think that's important to note that, yes, they passed the LCM, but they amended it with a point about the fact that this Parliament hasn't done its duty and gone through the implications for Wales in detail, and a lot of those in Wales that are supportive of the bill as well, just don't feel like they've had an opportunity to shape this bill.

So I think I thank the noble Baroness for her intervention. I hope that clarifies a little bit further, but I thought this was concisely put by Adam Price during the 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.

I sincerely hope that this vote is the last time that the Senedd puts is put in that situation, and also other devolved parliaments. The Senedd passed the LCM with an amendment that read as I. As I just mentioned, that the Senedd regrets the lack of thorough consideration of the constitutional implications of this bill for Wales during the legislative process. And my Lords, as I just said, I believe that the passing of that amendment is also showcases that we have failed our own duty here in relation to those implications.

Amendment 903 and 905 are my name. AIM to restore an amendment that was agreed in committee in the Other place. This amendment was later taken out at. Report without resolving the purpose behind the amendment being put forward and agreed at committee. Simply. This amendment gives the Senate a vote on the final bill passed here before the regulations can be created by Welsh Ministers for the delivery of an assisted dying service in Wales. The reason for this amendment is simple. As I already highlighted during Second Reading.

Although the criminal law is a reserved matter, the legality of assisted dying in this case, the delivery of such a service is a devolved matter, so not allowing the Senedd to have a vote, nor the opportunity to fully scrutinise and amend this Bill is infringes on devolution and disrespects the roles and duties of members of Senedd. Health and social care make up over half of all spending from the Welsh Government budget. Therefore, do noble Lords not agree that it is essential that members of Senedd are able to scrutinise all health spending, not allowing members of Senedd to shape this bill limits their ability to do this.

The Covid pandemic is the most recent prominent example of how Wales do things differently when it comes to health. This Parliament needs to wake up to this reality and let devolved parliaments do their job. This matter is an anomaly from a devolution perspective, as in Scotland, this is a fully devolved area and the Scottish Parliament recently had the opportunity to debate and shape its own bill that could be suitable for Scotland. If the Scottish Parliament has the right, why can this not be the case for Wales? I now turn to amendment 844, which creates a new clause in order to address this exact issue.

This amendment delivers parity between Scotland and Wales on this matter by amending the Government of Wales Act by removing offences related to suicide from reserved matters. This would allow the Senate to, if they choose to do so, introduce their own bill on assisted dying. This would allow the Health committee to take their own evidence, including from NHS Wales and the Welsh Government. Health Secretary. Your Lordships will be aware of the list of witnesses that were called to recent select committees ahead of this bill.

The Chief executive of NHS England was called to give evidence and there weren't representations from Wales. I do respect the work that members on that committee carried out, however, with those members agree that the Senedd should also be able to take evidence from within Wales and be able to make decisions on the establishment of a new service in Wales for the people of Wales, based on Wales specific information, I do believe amendment 844 is the best course of action for us.

In order to recognise that this bill has not been designed with Wales for Wales and align Wales with Scotland in terms of making a decision on this matter. And now I finally turn to the noble Baroness, Lady Coffee's amendments that are also in this group. In the hypothetical scenario that we pass her amendments alone, we will be leaving Wales in a grey area. Wales would be taken out of this bill, however, with no way for the Senate to legislate on this matter.

So I do believe as a House, we must consider the full consequences and where those decisions will then lie. What my amendment 844 does is avoid that scenario and ensures that the Senate has a way of legislating on this matter if they choose to do so. To conclude, as I have already highlighted in my Second Reading speech, I do support people's right to choose how they die. However, in the case of a of services being made available in Wales that must be shaped and designed by the people of Wales, that must be an ability for the Senedd and not for us here in Westminster.

10:29

Baroness Fox of Buckley (Non-affiliated)

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My Lord. that was a tour de force and goodness knows we rarely agree. And I'm hardly applied supporter, but I am from Wales and I wanted to just reflect on just a couple of tiny things that she said and why I wanted to speak. Family and friends in Wales were completely confused about what the vote meant when it happened. They thought that have we just voted for assisted dying? It wasn't always clear the way it came over.

They weren't sure what was being voted on and they weren't alone in a way, because I think that when I talked to people, I also feel very uncomfortable that the Senate were basically asked to vote on a blank check, as was said, because M.S. didn't don't couldn't know what the bill will look like yet, because you can blame us here that we haven't got very far. But the truth of the matter is, it seems rather presumptive for the Senate to be asked to give consent in advance when we don't yet know if amendments will get through this place, how, what, how they'll change the bill.

And that includes amendments by the noble and learned Lord, by the way, the sponsors of the bill, it just seems also disrespectful to this House and the process to treat the bill as finished, as a given in relation to the Senate. So, as I say, family and friends were saying to me, what did we just vote for? Have you passed the bill? And it was very difficult. I know we haven't passed the bill, but you are voting that regardless of what bill we pass, you're giving consent.

It didn't feel like the kind of consent. I've got much faith in. The only other things to add are that I think it would be wrong to see this as pro or pro or anti assisted dying. I mean, I was struck by James Evans, Ms. who's a supporter of assisted dying, who explained the question before us today is not whether I support the principle. I do support the principle of assisted death. The question is whether it is right to grant legislative consent to legislation that is still evolving, still subject to amendment and still under scrutiny elsewhere.

I think it's very important to recognise that the disquiet is not about assisted dying, but about the process. And then I suppose I finally want to say that I know that everyone here is, or that the sponsors of the bill are very hot on Democratic decision making, which is. And in in elected houses. And I did think it was very odd that this presumptive 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 this consent motion appeared to undermine.

The Welsh Synod, such as it is voted against assisted dying on principle. I'm not saying it should stand, but why we here in this House think we can wander along with the consent motion for a bill that hasn't yet been decided and say, oh, forget your principles, you've got to sign up to this consent or else I think is bad form.

10:32

Baroness Finlay of Llandaff (Crossbench)

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Yeah, yeah. >> Yeah, yeah. >> My Lord, I'm most grateful to the noble Lady Baroness Smith of Llanfaes for her excellent tour de Llanfaes for her excellent tour de force on the constitutional issues facing the Senate in the face of Westminster, particularly as we move into elections. And there are a few background comments. I would like to make much more from my own professional angle in Wales. We mustn't 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 now being at breaking point because the demands of the terminally ill bill risk drawing away funding from the sector that sorely needs funding. And 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, has admitted that ensuring the availability of Welsh speaking staff would be challenging, but people would find it much more difficult to communicate in a language which is not their first language, and it is much harder to ensure understanding the tech coercion detect difficulties unless you can communicate in your own language.

I know we're coming on to interpreters later, but I would remind the House that Welsh and English have equal standing in Wales. The amendment that was removed in the other place, I think, was unfortunate that it was removed because actually the government has own impact assessment, indicates two and three older people in Wales struggled to make suitable appointments or communicate with their GP for many, many reasons. That is not because of the problem of the GPS. It is a problem of rurality, of access, of recruitment, of resources.

So there was a major concern to that. Actually, the the Senate's Health and Social Care Committee detected, and they warned the lack of a dedicated voluntary assisted dying Commissioner for Wales would risk the Post-holder, as in the bill, being less familiar with the operation and impact of the Act in Wales and a risk of further inequity as a result. And this is the tension between health and justice in terms of the route. So my amendment, which I'm delighted that the noble Lady Baroness Coffey has co-signed seven six, four, respects the devolved competency of Wales and removes a sweeping Henry, the eighth power that the Delegated Powers and Regulatory Reform Committee on which I sit and which I serve has objected to, as I quote, highly inappropriate.

Both clauses 41 and 42 provide for the regulation of voluntary assisted dying services, health services provided for or in connection with assisted dying in England and Wales respectively. I will now focus on Wales. The 32nd report of the committee expressed, I quote, particular concern that the powers can provide for anything that an Act of Parliament can do without the scrutiny that an Act of Parliament would receive. And the report went on to discuss some of the things that such a power could be used for that might evade proper parliamentary scrutiny.

To quote from the 49th report, follow up report expressed particular concern that the powers can provide for anything that an Act of Parliament can do without that scrutiny, because allowing a power to provide for anything that an act of Parliament can do makes it unknowingly broad, even when there are expressed limitations on its exercise. Describing this as a fundamentally flawed approach to delegated powers, the report continues the exercise of delegated powers is subject to significantly less effective scrutiny than a bill.

Little, if any time, is devoted to line by line scrutiny. Statutory Instruments are unamendable and their rejection, as your Lordships know, is exceptionally rare. My Lord. Such wording that we've seen in this clause only appears in two Acts of Parliament, the European Union Withdrawal Act of 2018 and the European Union Future Relationship Act of 2020. Basically, the Brexit changes. On the day of the Senate vote, Lord Faulkner wrote a letter already referred to which was copied to members of the Senate, implying that without legislative consent from the Senate, a person in Wales eligible under the act could only legally access an assisted death through a private provider or by travelling to England, and went on to state that he would seek to remove clause 42 from the Bill.

The whole of the clause. Additionally, I suggest that by removing 42 little three, which is in my amendment, is because the Bill doesn't state that Welsh Ministers must be consulted. If the Secretary of State makes regulations about the provision of voluntary assisted dying services in Wales, nor the limits on the powers of the Secretary of State to override the school and impose aspects of such provision on Wales. Hence my very short but I think,

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crucially important amendment. Can I say that you see, back in

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Can I say that you see, back in her place the noble and learned Lady Baroness Prentis of bamboo. Lady Baroness Prentis of bamboo. She has been very much missed and I hope this is the first stage on the hope this is the first stage on the road to full recovery. Yeah, milord. She, like me, may have a feeling of She, like me, may have a feeling of Groundhog Day to day because since she was last with us, we have made

10:39

Lord Pannick (Crossbench)

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lamentably slow progress on this bill. We're on day 12 of committee, bill. We're on day 12 of committee, and we're still on clause five of and we're still on clause five of 59. And as the noble Baroness Baroness Coffey mentioned, of Baroness Coffey mentioned, of course, she began our Committee course, she began our Committee stage proceedings on the 14th of November with her moving the first of her 111 amendments to this bill in relation to Wales.

And here we are again. My Lords, I say simply to the House. Of course, of course, this bill should apply to Wales. The Bill seeks to create an exception to the prohibition on assisted suicide, and that's an aspect of the criminal law of England and Wales. And criminal justice, we all agree, is a matter reserved to Westminster, and it would be bizarre were this House were Parliament to approve this 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 very carefully to what Baroness Smith said, and she suggested that there's been some parliamentary mischief that the people of Wales have not been listened to. But it's the case, isn't it, of course, that the people of Wales have a number of representatives in the House of Commons? My understanding is that

10:41

Lord Stevens of Birmingham (Crossbench)

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10:47

Lord Deben (Conservative)

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10:59

Lord Carlile of Berriew (Crossbench)

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this Parliament decides whether we pass this bill. If this bill is pass this bill. If this bill is passed, then the government will have to provide the resources to have to provide the resources to enable it to work. And 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 which are required.

Now back to my 2900miÂ² of Wales. In fact, the old county of Montgomeryshire, now part of Powis, now part of a bigger constituency, has no acute hospital in it. It has a number of cottage hospitals, as they used to be called, local hospitals, and very good they are too. The local medical services are, on the whole, excellent. But there is no acute hospital. So when people would go, for example, to their GP and in rural Wales, most people surprisingly know the name of their GP and are on first name terms with them 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 as it happens. So the need for uniformity in the provision of services is essential, but that uniformity would not be provided by the principal. The conceptual principle behind the bill, but by the way in which it was put into effect. Now let's go back to the conceptual principle behind the bill, because I agree with my noble friend Lord Pannick.

This is not a health bill. This is not a bill about the provision of palliative services. This is a bill about allowing a citizen to help another citizen to die. This is about life and death, and it's about the law. Because if a citizen today helps another citizen to die, and I am, I too am delighted to see the noble Lady back in the house because she's a very fine lawyer and has been a law officer noble and learned Lady, I should say.

We know. She knows, my noble friend knows, and I happen to know because I'm a lawyer and was a Welsh MP, that the decision that would be made would depend upon a change in the criminal law of the United Kingdom, which is a reserved matter. So what I suggest to you, Lordships, is that we should get on with deciding whether this bill is passed or not, as the case may be. And as I've said, I'm not in favour of this bill, but let's get on with the parliamentary procedures which are placed upon us.

And then later, if this 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 Bay.

11:02

Lord Weir of Ballyholme (Democratic Unionist Party)

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My Lords, my Lords, I rise and first of all, I would join with first of all, I would join with others in welcoming. It's good to see Baroness Prentis back in her place. I'm sure the whole house welcomes her back. I cannot claim like Lord Carlile, to have had a particular background in representing Wales. The closest I've been is a few childhood holidays, but I do have experience in one of the three main devolved parliaments throughout the United Kingdom, and we do have a unique constitutional settlement in the United Kingdom, part of which I think is the right level of irregularity and rough edges so that Northern Ireland, Scotland and Wales are not.

Devolution does not happen in exactly the same format. Can I say I? I find myself in complete agreement with Baroness Meyer in her excellent speech. I do not know if she should be more worried that I am agreeing with her, or whether I should be more worried that I find myself in full agreement. But the reality is that her speech clearly indicates that the amendments in this group, which I think are worthy of support, go to the heart of important issues on the constitutional settlement that we have in the United Kingdom, and therefore, I think they are worthy of support.

Whether you are the strongest supporter of this bill and of the principle, whether you're the most fervent opponent, because I think they tie in. Importantly, it is important that the will of the Parliament of Northern Ireland, Scotland and Wales are fully respected and I think there is on occasions, I think, a danger of Parliament at Westminster showing a little bit of a tin ear to the desires of the Parliament's in the devolved institutions. We have seen it as has been alluded.

I'm not going into the details of it at times where things have been imposed on Northern Ireland against the wishes of the Northern Ireland Assembly, and I think similarly, we need to be sensitive towards the wishes of the Welsh Senate. It is the case that in terms of the. The consent motion was. The Senate was left in a virtually impossible situation, and I think it is very concerning that that has been in many ways misrepresented by some as the Welsh Senate embracing a bill on assisted dying.

That has been some of the spin that has been put upon that, whereas we know what has been the case, is that the one vote that has taken place in terms of principle within the Senate was to say that they didn't support legislation of this nature. Now, I think that we do have to say that assisted dying has clearly a very large element of this is within the health implications, and as such, I think we should be respecting the devolved positions of the Welsh, Scotland and Northern Ireland this week.

Within Scotland, they have looked at their legislation and I agree it is not the same as before this House. Of course, we were told by the supporters of the legislation in Scotland that it was, quote, Bullet-proof, which then was held as not actually seen quite level of safeguards, which then does slightly call into question the oft repeated phrases regarding this legislation, the safest in the world. Those phrases seem very similar, I have to say, but it is important that we do actually respect the wishes in the devolved institutions.

Lord Pannick is right, I think on one particular point, whenever he highlights that, actually, I think in the very first day of Committee stage, there were a number of amendments which also touched on this area, I think particularly brought by Baroness Coffey. One of the disappointments, which I think is symptomatic of the way that this has been dealt with, is those concerns were raised on day one, and yet there has not been a, I think, a proper addressing of those, rather than Wales falling into line with what is brought forward here.

It does seem to me that we should actually be taking action, which enables this place to retrofit whatever decisions are made in Wales for the Welsh people, and I think that is right. Can I conclude, I think by slightly oddly, agreeing with one point that was made in intervention? It was said, I think, by one noble Lord, that essentially we've had enough talk about this lack of funding of palliative care. In one sense, he is right. Perhaps it is important that we had less talk about funding of palliative care and more action on funding of palliative care.

11:07

Lord Harper (Conservative)

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11:18

Baroness Fox of Buckley (Non-affiliated)

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But I can't let the noble Lord Lord Paddick get away with that. I, I first of all, what happened on Wednesday night was a separate Wednesday night was a separate issue. And as it happens, I argued for a change. I argued for a change in the law in relation to decriminalising abortion. And I'm 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 particular bill.

The idea that no one wants to get to Report stage. I would much prefer to be voting on aspects of this particular bill, because a wide range of concerns have been raised, had been tabled through amendments by the sponsor of the bill, so that we could get on with it. That would be what I'd want. And the only reason we're discussing Wells, by the way, is, as far as I was concerned, was because of what happened, since we've discussed it in the first day, apart from anything else, which is in relation to the Senate's decision, and I think it's a perfectly appropriate thing to raise it.

The idea that we're wasting time talking about Wales said, from people who apparently respect devolution does seem a bit rich, but we want to get to the Report stage and we should keep the insults out in order to do so. insults out in order to do so.

11:19

Lord Goodman of Wycombe (Conservative)

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I rise to move my amendment 765, which has been supported by the noble Lord, Lord Rooker. And what my amendment would do is to delete from the bill subsection four of clause 42. Let me just briefly read the subsections. It's not very long. Regulations under subsection 3rd May make provision that A could not be made by an Act of Parliament, and B would not be within the legislative competence of the Senate if it were contained in an act of the Senate.

Now, I won't repeat the case put by the noble Lady Baroness Finlay, who quoted the report of the Delegated Powers Committee on which I sit, which argue that this clause is highly inappropriate. Rather than do that, I have a simple question I'd like to put to the sponsor of the bill that I'd be grateful if he'd address when he winds up. And if I may 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's Future Relationship Act 2020.

Now, I wasn't 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 that 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 Parliament which peers and members of the other place can amend.

I'd be grateful if you could answer that question when he replies to the debate. And if he can't? I look forward to returning to this committee report if we ever get that.

11:21

Baroness Blackstone (Labour)

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Regrettably, we're never going to get to report. Members of the House keep referring to report. And can I say that my noble friend, the sponsor of this bill, has frequently said 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 at Report stage, whether a more disciplined and focussed approach to scrutinising this Bill by those who oppose it, we would have perhaps got to the Report stage, but we haven't.

Given that we haven't. Can I just finish? I want to make one more point. I think we've had a long debate about Wales, including all sorts of questions about the devolutionary

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arrangements, and I wonder whether we can now hear the frontbench. Yeah, yeah, yeah. For the noble Lady sits down.

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For the noble Lady sits down. Would you perhaps like to make it clear whether she believes it's inappropriate for the sponsor of the bill? To reply to the question

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the bill? To reply to the question I've just put in this Committee stage. I hope I will be permitted to

11:22

Lord Thomas of Cwmgiedd (Crossbench)

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>> I hope I will be permitted to say something about Wales. I was say something about Wales. I was going to make a much longer speech, but my noble friend Baroness Smith of Llanfaes has made an excellent argument on the merits of the issues relating to Wales and what is at issue. It seems to me, in the short point to which I wish to draw attention is the. Is the issue in this case. Is it an issue about criminal law, or.

As often arises in questions within a federal form of government, which in reality we have here? How do you characterise this issue? And does anyone really think this is about the criminal law? The criminal law is part of finding the solution. But if you look at the debates, it's the debate about a moral issue, and it's a debate about how you use the resources of the NHS. But the criminal law should not be seen as an impediment. And I wanted just to draw attention.

I would have said a lot more about other things, but being accused of wasting time, I will not make that speech, but just draw attention to the problem that arose in 2016 2017. Wales wanted to pursue its own policy in relation to what is old fashioned, known as the chastisement of children, and of course, the chastisement of children is governed by the criminal law. And as they wanted to do it at a time when there was a conservative government in London and a Labour government in Wales, there was discussion as to how this issue should sensibly be dealt with in an intergovernmental discussion, and 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.

And so it was excised from the reservations of powers to Westminster. And it seems to me that in this bill, all that amendment 844 seeks to do is to make a minor alteration so that if you look at the issue for the people of Wales, should they be entitled to deal with this issue comprehensively? And I don't say anything about what happened in the Senate, and nothing has been said about that. Just remind you there'll be a new Senate after the 7th of May before this bill is dealt with, and a very different attitude may be taken.

Having heard what has been said about the desire that the people of Wales should not be entitled to make their own decisions, I very much hope we are able to try and focus. What is the issue? Is it one Wales ought to be able to make? If it's not, then the simple solution is a technical one which can easily be made through

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amendment 844. The inference. From some comments during the course of this debate has been that course of this debate has been that somehow the issues raised in Wales and by the Senate are peripheral to the centre of this legislation. Not at all. The issues that have been raised by this debate are raised by this debate are absolutely central to this legislation. As we have heard throughout this debate, the bill throughout this 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 Lord Stevens of Birmingham, by 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 which are not on the face of the bill. And that is precisely the point that was at issue when the legislative consent motion was debated in the Senate, as we have heard, as my friend Lord Harper pointed out, when the Senate had voted, Senate had voted on the broad principle of assisted dying, not this legislation, but the broad principle.

The Senate was against it. When invited to vote on the legislative consent motion, the Health Minister in Wales, Jeremy Miles DCMS, explained to the members of the Senate that a legislative consent motion would be necessary because in the absence of

11:27

Lord Gove (Conservative)

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a legislative consent motion, as he understood it, it would be criminally possible to assist criminally possible to assist someone in dying, but he would not someone in dying, but he would not be able to provide the appropriate detail about whether or not the NHS would be responsible for that would be responsible for that service. So the Spectre was raised in the minds of those legislating in the Senate that, in effect, you would have assisted dying, but that would be provided privately.

Now, Jeremy Miles might have been confused in his interpretation, but he is the health Minister in the Welsh Government, who had previously been the Minister responsible for constitutional relations between the Welsh Government and the United Kingdom Government. So it is hardly the case that he is a naive stumbling into this argument without a background in the two most telling areas that this legislation covers. It was also the case that the Senate, in that same debate, voted by a clear margin, to say that the whole issue had been constitutionally mishandled, that the way in which criminal legislation was being used as a Trojan horse, as has been pointed out to, in effect, potentially dramatically change the Constitution and the provision of the NHS was simply not good enough.

And the Senator was very clear in voting in that way. And it brings us again to the heart of the problem with legislating for these measures through the private member's bill procedure. In a previous incarnation, I was the Minister for Intergovernmental Relations. I may have been a bad Minister. I may have been a good Minister, but the one thing I was was a Minister conscious of the fact that the devolution settlement relied on government to government operation, when there were disputes between the legislative or the executive decisions of devolved legislatures or devolved governments, they were resolved by intergovernmental relations and in particular by means of a dispute mechanism.

At the moment, as has been pointed out, there have been a variety of questions which have been raised about the nature specifically of regulation to do with the NHS, which Ministers at the Dispatch Box cannot answer, not because they are unwilling or because they're truculent or obstinate, but because, as they clearly say, they are neutral on this bill. So the Welsh Senate granted the legislative consent motion because they feared they feared that they would not be able to be in the driving seat of a vehicle, the ultimate destination of which they were uncertain of, and the design of which they had little part in.

But they felt that this was the only way of ensuring their continued relevance. It was not, and indeed, supporters of the Bill in Wales made it clear it was not an endorsement of the principle of assisted dying, let alone an endorsement of this legislation. It would be, I think, not just dismissive of the people of Wales and reckless in regard to the devolution settlement, to interpret that vote as endorsement of this legislation. What we should do is realise that this legislation, as the Senate 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. Its resourcing, as my right, honourable and noble friend Lord Stevens pointed out. But it is also about the constitution of the NHS. As Lord Stevens of Birmingham has pointed out, those issues were raised by me and by 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. Down.

11:31

Lord Winston (Labour)

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Can I just ask this question? Because I'm genuinely a very simple doctor and I don't really understand this problem. It is clearly a problem in ways that I think is a humanitarian one. For example, at the moment in the House of Lords, we're discussing very complex issues regarding precision medicine, which involves the use and manipulation of genetics, some of which will certainly require, for example, ethical considerations by this House, I have no doubt. But the issue is that clearly these advances in medicine cannot be denied to the people of all the United Kingdom, because they might change healthcare in amazing ways, but they will be far more expensive, for example, than assisted dying.

So how does that work? Perhaps the noble Lord could just briefly explain to me why it seems wrong that we might be depriving the Welsh of something that is much wanted, simply because we can't find the way to go through this on a legal basis.

11:32

Lord Gove (Conservative)

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Well. >> My remarks, but briefly, I'm very grateful to the noble Lord for raising it. Precision medicine, precision medicine, and the precision medicine, and the advances that it potentially holds for all of us are wonderful, wonderful potential breakthroughs, but changes not just to the legislation, but to the regulations governing that 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. In this bill. Now, it may well be that the sponsor of this bill can clarify what was meant, why it was that Jeremy Marles believed that if a legislative consent motion had been denied, that we would have legal assisted suicide assisted dying in Wales without the capacity of Westminster to determine the future of the NHS as they wished.

Perhaps that can be cleared up, but having to clear it up here when we already had the legislative consent motion and the relevant Minister told other members of the Senate that the only reason that they should back that motion was because of the fear he had of the effective privatisation of killing in Wales. Well, we cannot have a situation like that, and that is why we must have essentially government legislation rather than proceeding by Private Members' Bill, which is clearly inadequate when we are dealing with the future of the NHS, not just for the people of Wales, but for the people of the entire United Kingdom.

11:34

Lord Wolfson of Tredegar (Conservative)

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Yeah, yeah. Brilliant. >> My Lords, may I first. >> Take a moment from the front bench to say how wonderful it is to see my noble and learned friend Baroness Prentis of Banbury. She Baroness Prentis of Banbury. She was here a moment ago. Causation. Causation is denied. Lord Paddick. It'll be in Hansard. I did speak to her outside. I was going to say it's a testament to her dedication that she's been following this on TV. I don't know whether that shows how poor daytime TV normally is, although those of us who were here on Wednesday remember that your Lordships' House is also very late night TV as well.

My Lords, I spoke on the amendment when we first touched on this topic right at the beginning of Committee stage. And of course, as my noble friend Lady Kofi said, those amendments interrelate with what we've said and has been discussed today. And so far as the front bench is concerned, we are focussed on the question to make sure that we do not end up with a situation where different citizens and residents in the United Kingdom have very substantially different rights in areas as important as this, and I listen very carefully to what Baroness Smith of Llanfaes said about what actually happened in the Senate.

And the phrase voting in the dark was a stock phrase, and one which I think we ought to remember so far as the question as to what this bill actually does is concerned. It reminded me of when I studied private international law, where you have something called the characterisation question, something that lawyers often like. And 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.

So in this case, you ask the question, well, what does this bill do? And Lord Pannick the noble Lord Lord Pannick and the noble Lord Lord Carlile of Berriew rightly say, as a matter of form, this bill amends the criminal law, and therefore it is a competence of Westminster. But of course, in reality, assisted dying won't be provided by the criminal justice system. Assisted dying in practice will be provided by the health service. And that's why I listened carefully to what the noble Lord Lord Stevens of Birmingham and noble and learned Lord Low Lord Thomas of Cwmgiedd said that in practice, this is a bill which touches on health, which is a devolved competence.

And it's that that brings me to the wider and I think more important point. Earlier this week, the noble and learned Lord, Lord Falconer of Thoroton, raised the issues of Jersey, Guernsey in the Isle of Man, the Crown dependencies in the debate on the Crime and Policing Bill. And of course, we also learned this week that the Scottish Parliament has chosen not to proceed with the version, and it was a different version of this bill proposed there. If this bill were to receive Royal Assent, we would end up in a position, therefore, where different rights would exist very substantially to different residents and citizens in the United Kingdom.

And that raises an important point of principle on which I'd be interested in the noble and learned Lords view. Does he see it as a success of devolution, that on an issue as significant as this, people living in different parts of the United Kingdom and for these purposes, for these group of amendments, Wales might have different rights in law. Or does the noble Lord have potential solutions to create a situation where as close as possible, people have the same or substantially the same rights? And I would also respectfully ask the noble Lady, the Minister, to respond on this point as well, because frequently from the front bench we've heard the phrase we are neutral.

We are only interested in workability. We'll look at these issues as and when they arise. But this is a deep constitutional issue. The government can't be neutral on the point. I would suggest, whether it's content in principle, that people in England could or might have very different rights on assisted dying to people in Wales. The government must or ought to have a stance on that fundamental constitutional position. And they also, I would suggest, ought to have a position on the point raised by my noble friend Lord Deben as to whether, if this bill were to go through.

And. Palliative care is such an important part of the overall process, they would be equalising the funding to make sure that residents of Wales have the same access in practice to palliative care as those of us who live in England do. And for those reasons, I look forward to the responses both of the noble and learned Lords and also the noble Lady, the Minister.

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VSED Lord Wolfson. My Lords, I'm grateful for the

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My Lords, I'm grateful for the views that have been expressed today and as usual, I will keep my remarks to those amendments that are raising significant legal, technical, operational workability technical, operational workability concerns. I would also like to very much associate myself with the much associate myself with the welcome from these benches to the noble and learned Lady Baroness Prentis. We were delighted to see her return to your Lordships' House

11:39

Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)

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11:47

Lord Falconer of Thoroton (Labour)

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12:08

Deputy Chair of Committees. Baroness Morgan of Drefelin (Labour)

House that the next debate will be joined by a remote speaker, so I will call the remote speaker directly after the next. After the next amendment has been proposed. So my Lords, amendment 167 Baroness Fraser my Lords, can.

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I bring you back from Wales. To the issues of speech and language and communication issues language and communication issues which affect everybody equally,

12:08

Amendment:167 Baroness Fraser of Craigmaddie (Conservative)

right across the United Kingdom? My amendments in this group one, six, seven and four 546 seek to ensure that people who have serious speech and language and communication issues have an element of protection in this bill, and they are supported in accordance with best practice. I remind my Lords of my interests as Chief Executive of Cerebral Palsy Scotland, and I have drawn on my organisation's experience supporting people with serious communication issues to inform my remarks. Now, amendment 167 is a probing amendment designed to explore the specifics around 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. An amendment 546 simply adds 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 section four that if a registered medical practitioner conducts such a preliminary discussion with the person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters.

Now, I have taken this to cover those for whom English is not their first language, but I'm not convinced it covers a situation when someone has to communicate using augmentative and alternative communication known as r c. And let me explain why I have specific concerns in this area. This population can be divided into those who have moved on to AAC because of disease progression. For example, those with neurological conditions like MND or Parkinson's, and those who have always required assisted communication.

Those with complex cerebral palsy or severe autism. This population may be deemed to understand English, but they have never been able to speak, so AAC is their de facto first language. Experience illustrates time and again how those who experience communication difficulties, and especially those for whom AAC is their first language, struggle to deal with difficult conversations. At Cerebral Palsy Scotland, we work with people with very complex needs, including those with learning disabilities, who need symbols to support understanding and communication.

This group will express themselves in a way that isn't typical, as they will be restricted to a limited vocabulary. There are tools. Baroness Grey-Thompson. Amendment 172 specifies Makaton, but there are others, such as talking mats that are designed to support big decision making, and these are currently used to understand a person's desire to, say, live independently or express what type of care they wish to receive. However, these methods of communication need to be facilitated by a professional who will suggest options option A or option B, and the individual themselves does not have free choice of the words they can select.

So my Lords, now put this individual in a context where they have been diagnosed with a terminal disease, and they meet all the criteria of this bill, and yet they might not be privy to the right vocabulary or the right specialist professional support. How can we be confident that they have fully understood the process, and it is their free and settled choice to die? So much of our communication with people who have complex, complex communication needs is co-constructed.

Tools such as talking mats or makaton rely on a professional making the initial choices, making assumptions. And. How many times have we seen carers or family members talk for a person because they know them best and they know what they are trying to say? And again, I ask, in these situations, how can we be confident that this is truly the settled opinion of the person who is being talked over? Baroness Grey-Thompson amendments 322322A and 406. Speak about communication in accordance to a person's needs and wishes, and providing translation in a format of the person's choice, and recording that if communication needs have been identified, how have they been met? And I support all these amendments.

People who do not have a learning disability and may come to use AAC because of their disease progression, or like many adults with cerebral palsy that we support, they may be literate and use devices that use typing and predictive text. They may have the vocabulary to make their views known, but only if they are given the time and the space and the support to do so. Now, I don't know if any noble Lords have actually ever tried to communicate through an AAC device.

Often I have, and often you have to scan through a word at a time, picking up which row you choose, and then you go down which word. It requires incredible skill, incredible concentration, and it is exhausting. You do have to really, really concentrate because otherwise your eyes go off and you don't say what you want to. And it is essential to allow sufficient time within the appointment to retrieve longer messages. And fatigue and frustration are common. AAC users time and time again report to us how they are not listened to, and this affects how much control they feel they have over situations like housing, social care and health, how much real choice they have now, how will they feel in a preliminary conversation? We know this population feel misjudged because of their communication requirements and are often considered by others, including health professionals, as not having the ability to communicate their thoughts, feelings, needs, opinions and this has a direct impact on mental health and social isolation.

I mean, to give you an example, at Cerebral Palsy Scotland, around 15% of adults that we who access our services are AAC users. And of those, over 40% request mental health, wellbeing and psychological support so those with complex communication and speech difficulties who wish to access assisted dying will require significant access support that goes way beyond provisions for literacy barriers or interpreters. And more concerning, given the two, often two 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 establishes that enables the full range of options to be explored and and understood without employing assistance outwith that currently envisaged in the process laid out in the bill.

So amendment My amendment 546 refers to clause 22 and the role of independent advocates, and section four says you 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. Now, AAC users, I argue, may be perfectly capable of understanding processes and information, but it is the communication, the communication of their views and their wishes that are far, far too often ignored and not given the time and support to be aired.

There are populations who will undoubtedly require to seek assistance. These are populations that would undoubtedly require to seek assistance from others to navigate the process, and yet how they can go about seeking such assistance from whom and at what stage, and that there are safeguards in place that we know the person who is being, who is being spoken for, has clearly decided to end their own life is not clear. So 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 that have resulted in the amendments in this group being necessary? My Lords, if informed consent at every stage, is at the heart of this Bill, then he will have no objection to the amendments that ensure, as the GMC guidance urges, all possible efforts are made to ensure effective communication with

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patients. I beg to move. Amendment proposed in clause

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Amendment proposed in clause five, page three. Line 12 leave out seek assistance to.

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seek assistance to. My Lords, I rise to speak to amendment 167 in the name of my amendment 167 in the name of my noble friend, Lady Fraser of Craigmaddie, and in doing so I should make clear that I support the other amendments in this group, and I also join with other noble Lords in saying how good it is to see my noble and learned friends. Baroness Prentis, of Banbury,

12:18

Deputy Chair of Committees. Baroness Morgan of Drefelin (Labour)

backed 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. My Lords, this 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 taste

12:19

Lord Shinkwin (Conservative)

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for making the language in this bill as clear as possible for both bill as clear as possible for both the many and the few is the many and the few is overwhelming. Doing so is ultimately about meeting the anticipatory duty to make a anticipatory duty to make a reasonable adjustment on account of disability. It was your Lordships' House which helped write that duty into law when it passed the Disability Discrimination Act 1995 Disability Discrimination Act 1995 and 2005.

And Equality Act 2011. Amendments 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. My Lords, I hope the noble and learned Lords will recognise our responsibility to be seen, to lead by example and to ensure that the wording of this Bill is in keeping with that duty, clearly and unambiguously.

I hope the Noble and learned laws will consider my noble friends remarks very carefully, because she speaks with considerable professional experience and authority, which should not be ignored. I hope that he will accept her amendment.

12:22

Baroness Berridge (Conservative)

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My Lords. >> I rise to speak to amendment 174 in my name and I'm grateful to them. Noble and learned Lord for the meeting on this issue. This meeting on this issue. This amendment states that any interpreter provided under subsection four must be aged 18 or over. It's a probing amendment, and if you put two lawyers in a room and give them wording from the NHS guidance saying inappropriate to use children, you're going to have a fascinating discussion about discretion versus mandatory, and that is the point behind this amendment.

It may be that a different age, say 16, might be the appropriate age, but since meeting with the noble and learned Lord, I have looked at certain NHS guidance from or guidance from particular hospital trusts like Leicester Partnership. NHS trust states you must not use children. Milton Keynes University Hospital says children should not be used as interpreters, so we have the overall NHS guidance using the word inappropriate, which seems to imply discretion. But then we have certain hospitals and obviously I haven't checked everybody but who using mandatory language.

So I think it is very important that we consider whether in this scenario, there should be any discretion to use children, whether that's under 18 or, as I say, under 16. My Lords, the Tia process, it should be mandatory because it's a substantial process here. This is the communication of a profound state of affairs. It includes numerous complicated stages, from a preliminary discussion to different coordinating doctors. It involves a Mental Capacity Act assessment, and it could involve the discussion of quite sensitive information about the administration of lethal substances and potential complications from that.

It is a serious and, as we said, irrevocable decision. So my submission to the noble Lady, the Minister, is that this should not be an option to lie in the hands of a child to be interpreting. But we should provide for qualified, skilled adults to be present and provide that service. So any relative, including children, can sit, support and have their own needs potentially met. So I'd like to ask the noble and Leonard Lord whether he is satisfied that this should be a service provided by the National Register of Public Service Interpreters.

It is not, of course, my Lords, a small problem from the census in 2021. There are around 7.1% of people in the UK speak English as a second language, and around 5% do not speak English well at all. From the NHS website. There are 1 million people that don't speak English well at all, and they will need assistance in terms of communication. If we don't provide this within the bill, it may be that relatives are used on particularly, children are used in situations where the interpretation services might be underfunded in that particular area because that is local commissioning that provides the interpretation services.

I acknowledge that the noble Lords may want that lower limit that some hospitals use of 16, but I do find it interesting to note that perhaps in the past the limit has been too low. And the former member of the Other place, Sajid Javid, talks about, and I quote, I used to go to the doctor's surgery with her. I think that's his mum, not because I'm ill, but because I had to interpret for her. I was 6 or 7 and an interpreter and I.

My Lords, I believe that we should make sure that children in our jurisdiction are not placed in that. In that situation, of course, from the evidence that was given to the Commons public Bill committee from Doctor Jamila Hussain, who's a palliative care specialist, this is an issue that disproportionately affects, of course, ethnic minority communities, not solely, of course, and there are numerous reports, numerous reports of poor communication and interpretation that lead to adverse health effects and life threatening illnesses being more prevalent in those communities.

So I do think it would be the safest way possible if we put something mandatory on the face of the bill and not allow for the possibility of situations where the young person feels they can't say having been alongside their parent or guardian for many years, putting along, putting something mandatory actually can protect those young people in relation to other clauses as well. In the Bill we have spoken and I believe it is relevant, not repetition here to say that the effect we now know on young people's brain and development can be profound through traumatic events, such as the death of a close family member.

It casts a new light on the possible neurological impact on the. The interpretation by a child. For a relative, seeking assisted dying could impact them and give rise to further health conditions as they develop. Reports state that if a child's hypothalmic pituitary adrenal axis is faced with traumatic stress, in this instance, the loss of the primary carer carer, it can lead to long term functional and structural changes in key areas of the brain's development, and it can. This can contribute to various psychopathologies, including, of course, obviously PTSD.

So putting something mandatory on the face of the of the bill so that children can't be placed in this situation and making it clear for all of the NHS hospitals who may have to deliver this is, I think, important and goes to a conceptual point. When I met with the noble and learned Lord about autonomy and choice. There are circumstances in which, particularly with children, we don't. We limit autonomy and choice and say it's better for all of us as the legislature, to have taken the decision to protect those children, and that those under the age of 16 in this context should not, should mandatory not be taking part in the process of interpretation.

And it may be as when we discuss this, that there are situations in terms of terminal illness and advice about treatment that children. It should be mandatory that children are not involved as interpreters in those circumstances.

12:28

Baroness Nicholson of Winterbourne (Conservative)

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12:35

Lord Moore of Etchingham (Non-affiliated)

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Lord Stern. I was deeply interested by the remarks of the. Nobel Baroness Fraser and. And very interested in her amendment. And just like to confirm from personal experience, a young man very well known to me who basically can't, can barely speak or hardly hardly speak at all, but through a and has therefore been effectively silent for all his life, but 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 really very late and.

And he is now communicating by these means, though he can only communicate by them really at this stage, at least through his mother. So I very much support what she's what the barrister is saying, but forgive me if I've missed something. I don't quite understand how the wording of her amendment achieves the effect, achieves the effect that she intends.

12:36

Baroness Fraser of Craigmaddie (Conservative)

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What I'm trying to to, to, to explore with probing the word seek assistance is what assistance is provided, because the noble Lord is quite right in the example of his his friend. There are people who cognitively absolutely can understand what's going on. And therefore, if you put it in the context of this bill, would understand the assisted dying process. But what they need help with is the tools by which to communicate their will and the time and the space, and sometimes the vocabulary to do that.

And I note that the noble Lords example said that, you know, his particular friend has only recently come to it. That is an issue, is understanding what is the right thing for some of these people. And he also said at the moment can only otherwise communicate through his mother. And that's my other fear that that far too often this population, people speak for them because they know them best. So I hope that clarifies my my intentions.

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You support the amendments in Group. Two and in particular, amendment 171 in the names of the noble Baroness Nicholson of Winterbourne Baroness O'Loan clause Winterbourne Baroness O'Loan clause five. As we have heard, my Lord introduces a key element in the 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, and, in their minds 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, my Lords, as we have heard, and 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, leaving it to others to say more, is designed to correct some very obvious impediments to mutual understanding.

A good deal

12:39

The Lord Bishop of Southwark (Bishops)

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of communication is picked up visually. Visual impairment requires an extra dimension when communicating. My twin brother, my Lord, was born with severe hearing impairment, so I speak with lifelong experience of what it is lifelong experience of what it is to communicate thoughts, directions, information, and feelings appropriately to someone who has a hearing impairment. Finally, and briefly, my Lords, for I understand that the right reverend Prelate the Bishop of Newcastle wishes to say more. I also commend amendment 171A my experience of more than 40 years of ordained ministry is that there are those who purport to represent a religious or cultural identity and do so for less than an individual's best interests.

That may cut both ways in this debate. I hope that the noble and learned Lord Lord Faulkner of Worcester will look favourably on these amendments, which are designed to provide assistance to women who may face coercion. Should this bill become law, it will make the vulnerable more vulnerable as it currently stands. This is why so very many amendments, including this one, are so vital. Although I continue to fear that assisted dying itself would make the vulnerable more vulnerable.

12:40

Baroness Hollins (Crossbench)

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12:45

Lord Blencathra (Conservative)

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Yeah. fundamental safeguard in the entire bill, whether the person's true wishes are understood, expressed and protected. If we cannot guarantee that risk, then other safeguards becomes illusory. Amendment 167 in the name of the noble Baroness, Lady Fraser, my noble friend Lady Fraser does something very simple but profoundly important. It restores clarity. It ensures that clause five refers explicitly to a person's wish to end their own life, rather than the rather softer and more ambiguous phrase seek assistance, too. 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 that does this not draw out the risk that the doctors may be also imprecise in their interpretation? And this amendment is not a rhetorical flourish. It's 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. My Lords Amendment 171 addresses a glaring omission. The bill currently requires adjustments only for language and literacy barriers that the government's own inequality impact assessment states explicitly that, quote, persons with learning disabilities or deaf persons may struggle to understand the information provided to them in written or oral form, unquote, and that BSL is not a translation of English.

With evidence from New Zealand, my Lords, where a deaf man could not even access the assisted dying service because he often had to ring a phone number and he 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, quote, adjustments on accessible content are essential, unquote, and current easy read materials are often wholly inadequate. If we are legislating for a process that ends life, my Lords, then the minimum we must do it must guarantee is that the person can see, hear, or otherwise access the information on which their life ending decision depends. And 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. Professor Jane Monckton Smith and Colonel Henry Leach told the Lords our own Lords select Committee that victims of coercive control routinely deny their being coerced, and that GPS frequently miss the signs.

And Doctor Jamila Hussain, already referred to, described ethnic minority women in Bradford who are structurally disadvantaged, fearful of services and lacking culturally competent support. So if we do not explicitly recognise these barriers on the bill, then we risk creating a system in which the most vulnerable women, those least able to resist family or community pressure, are the least protected. So amendment 171A simply ensures that our 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. So these amendments all share a simple purpose to ensure that when a person says they wish to end their life, we know, we really, truly know that it is their voice, their will, and their informed decision. Amendment 167 ensures the bill speaks plainly. Amendment 171 ensures that people with sensory impairments can understand what's being asked of them. Amendment 171 ensures that women facing cultural or religious coercion are not unprotected. I conclude my Lords by saying, if we cannot guarantee their clear communication, accessible information and freedom from coercion, then we cannot guarantee informed consent.

And if we cannot guarantee informed consent, then we have no business legislating for assisted dying at all. I urge the noble Lord, Lord Falconer of Thoroton noble and learned Lord, to accept that proposition. I urge the House to support these amendments.

12:49

The Lord Bishop of Newcastle (Bishops)

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I'm very grateful to the right reverend Prelate, the Bishop of Southwark for preparing the way for some of my comments that I wish to make briefly now broadly to this group, which seeks to address issues around communication, language barriers and interpreters, I support the amendments that are laid before your Lordships House in that regard. Amendments 171A and 174A in the name of the noble Baroness, Lady Nicholson requires the provision of an advocate for women who might have additional vulnerability to coercion, especially due to cultural and religious factors.

It's a very interesting and significant idea, and I think it highlights the complex factors at play in considering certain groups of people. Because, my Lords, 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. My noble friend Baroness Berridge has already raised the evidence given by Doctor Jamila Hussain in the earlier passage of this bill, and Doctor Hussain warned us about failing to recognise this issue of inequality.

She said 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 is currently in the Bill could be highly damaging to an already strained trust in the health service. Secondly, my Lords, and briefly, I want to make a general point about issues of communication, language and interpreters. Again, doctor Jamila Hussain talked about the challenges of having end of life conversations.

She said these are nuanced, sensitive conversations. Understanding is not always straightforward. I know myself as your Lords. How when I worked and lived in New Zealand, how I had to work very hard both to communicate in another language to Maori, but also for my words and my thoughts to be conveyed into that language and into that cultural context. This bill assumes a sense of clear, individual and fully informed choice. However, when it comes to communication, language barriers and interpretation, this is so often mediated, culturally shaped, and indirect, and it seems that we are left with a very difficult decision about are we prepared to live with the degrees of uncertainty that this then gives us, or are we going to somehow restrict access to any assisted dying service? I expect neither of these is satisfactory.

So I support these amendments, and I urge your Lordships to consider them. Lordships to consider them.

12:52

Baroness O'Loan (Crossbench)

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My Lords, I. Which I have put my name excuse me to amendments 171171A172174 and 174A in this group. And the group of course, 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 and 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 prepared by Baroness Moyo Baroness Shah Baroness Nicholson.

She rightly seeks to add provision for hearing and visual impairments, and also by 171A the noble Baroness seeks to ensure that provision is made also for cultural, religious and sex based factors. This covers a wide range of situations, my Lord, perhaps the most simple of which might be the reluctance in a woman to speak through a male interpreter in a discussion which 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 ensuring 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 Baroness Nicholson introduces an advocate with particular characteristics safeguarding experience in relation to cultural and religious issues, and being of the same sex as the person contemplating asking for assisted suicide.

Both profoundly important as they will facilitate trust in the advocate and hence trust in the process. Similarly, there are those who use sign language, a matter covered by the noble Baroness Baroness Gray Thompson's Amendment 172. Of course, under the British Sign Language Act 2022, which was sponsored by the former MP Rosie Cooper, British Sign Language is now an official language of England, Scotland and Wales, and I would say that the noble Baroness, the Rosie Cooper MP, was the child of two profoundly deaf parents.

She described to me the dying days of her father, who was dying at an advanced age, with many complications. But the problem was it was not possible for interpreter to be there, a sign language interpreter to be there when they needed to talk to him. And. And Rosie was finding it that she had to go so often to try and make sure her father was safe and understood the discussions and what was being put to him. This is a profoundly important matter.

In addition, those who are blind or partially sighted may may use amanuensis or Braille as provided for in amendment 173. It's not appropriate, though it does happen for children to be used as interpreters when their parents or family members are sick. The noble Baroness Baroness Berridge has referred to this as one who dealt with complaints in a northern health trust. I did receive complaints in respect of children being used at the age of 10 or 11 to discuss their parents, or particularly their mothers intimate medical conditions, something which was entirely inappropriate for children.

And I would suggest to noble Lords that if it's inappropriate for children to be involved in that kind of discussion, it is equally inappropriate for a child to be involved in the discussion of matters of life and death. And therefore I support the noble Baroness Baroness Berridge her amendment to preclude the use of children as interpreters. I support all these amendments and those of noble Baroness Grey-Thompson three, two, two and 322A that a version of any report must be provided in their preferred language or in an accessible format of their choice.

Amendment 408 seeks to assure compliance with this requirement by requiring a record to be kept of the communication affecting any patient. My Lords, in a country in which there are almost a million people with learning difficulties, in which over 100 languages are spoken, many of which do not contain words which are present in the English language, such as safeguarding. There are even languages which do not contain the word suicide, and in many cultures there are difficulties in discussing suicide.

So any discussion about whether a person wants to be described, prescribed and to take lethal drugs which will end their life, must be conducted with the utmost rigour to ensure that those making this final decision are under no pressure and have a full and complete understanding of what is being proposed and what the what the consequences, including any complications, may be. Can I ask the noble and learned Lord, Lord Faulkner, whether he will now support these amendments to make the requirements cover needs beyond language and literature? Surely this is proportionate to the seriousness of the discussions communications in this bill? Does the noble and learned Lord accept that his earlier amendment to lessen the duty on doctors to ensure effective communication, have increased concern in the House, and that these specific amendments are necessary? My Lords, the noble and learned Lords use of the words take all reasonable steps to which the noble Baroness Baroness Hollins has just referred implied that there are steps which can be taken to ensure effective communication, but which are too much effort or perceived to be disproportionate.

My Lords, in discussing whether to take your own life, aided by the state, crystal clear communication is essential. What must be required is all necessary steps, and those steps must provide explicitly for the categories of people referred to in this group. Noble Lords, I

12:59

Baroness Nicholson of Winterbourne (Conservative)

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follow the noble Baroness with reference also to our shared reference also to our shared amendment 174 A. I apologise for not raising this in my previous discourse, but the differences are discourse, but the differences are so acute that I just did not feel it right to share them in the same it right to share them in the same comment. And I believe that the companion allows me to speak twice companion allows me to speak twice in Committee stage. I declare also interests in this particular amendments are matters that I have worked with in closed communities worked with in closed communities for most of my life.

My most recent. Responsibilities have been with the charity, the AMA international charity International Charitable Foundation, which I founded about 35 years ago, and we have worked consistently, for example, with the sort of enforced enclosed community of the Marsh Arabs and with the enclosed communities of the Yazidis, the genocide victims, and with other enclosed communities which have more or less covered different parts of the globe. I work particularly closely, for example, with The Church of Jesus Christ of Latter day Saints, the former Mormons, as they were known, and with others who are in close communities.

My concern today is with Muslim women. We have two minority faiths in the United Kingdom, where women are deemed to be secondary to men. And as the noble Lords under the noble and learned Lord Wood realise, I know very well that women are superior to men, most certainly not inferior. However, that being accepted to be the case, and I'm not quite sure whether I will cause a dispute between the right reverend Prelate, the Bishop of Newcastle and the right reverend Prelate Bishop of Southwark on this.

But either way, I welcome and endorse what both of them have said about minority faith communities in the United Kingdom. I speak particularly strongly about Sunni women who don't speak English. And I'm sorry to say that because we in the United Kingdom have made so little effort to help them become literate and numerate in the language of this country. There are at least a quarter of a million, and there may be more. And those ladies and some of the men who are their family, their family members, and even those who are running the religious side of their lives, they may believe that verse 74 of the Holy Quran, which places women subservient to men in all cases and at risk of physical violence if they disobey, those ladies will believe that this is the norm here.

They don't speak English and they don't know the law. Many of them I know they are illiterate, functionally illiterate, and non-numeric in their own language of the countries from which they came. And some of those countries I refer particularly to Afghanistan, women do not legally exist in Afghanistan at all. They don't exist. The World Health Organisation tells me that this is the only nation in the world of which this is ever known. You come here from a country like that, that that is a unique country in that women don't exist.

You won't understand that. Actually, here you are a fool. You have rights. You are on the same level as everyone else. It doesn't matter whether or not you have money. It doesn't matter who you are. You are a citizen of the United Kingdom, or a visitor, or even an illegal immigrant, and you will still have that right as a woman and as a citizen. And indeed, if I think about children and my colleague on on the Crossbenches referred to children in this context, the United Nations Convention of the rights of the child was drafted here in this chamber by our former member Baroness Bakewell great great lady and the United Nations rights of the child on which I've worked all my life is very clear about the rights of children, and the rights of children won't exist in the minds of these ladies because they don't know about it.

This is artful. This is our failing as a nation. We've made no effort. We haven't helped them learn English. We haven't helped them get out. We haven't helped them understand their rights here. And of course, it isn't just coming from Afghanistan, Sistan and Baluchistan, where you believe that you have to drape yourself completely. That's not in the Holy Quran at all. Nothing like that. It's not in the Quran at all. I hope that all members of this noble Lordships House have read the Quran.

It's much more interesting and rich and full document. I read it a number of times and it is very important indeed that we understand it. It doesn't say what some of its practitioners claim or offer that it says. So I would suggest very clearly also that UK law predominates. These ladies and the men who work with them, who are their families, maybe they're the groomers even they believe they're doing the right thing. The new law in Iraq, a country I know intimately, declares that girls of 9th May be married to men of any age.

You come from Iraq, and a huge amount of people come from Iraq. It's very well organised by northern Iraqis and Iraqi Kurdistan. A wonderful business going, bringing illegal immigrants by boats across the channel to Britain. You come with that thinking and that background. Unless you're taught British law, you won't have any understanding at all of what you are. And this, of course, marks on our discussion here today. When you're nearly dying, or possibly or not nearly dying, but your family wants to get rid of you.

And it is worth remembering at the moment that I think it's 11% of all deaths, which is the highest number come from those who have Alzheimer's or similar diseases. So mum's a bit of a burden. Granny's even worse. Aunt can go as well. And what about cousin? What about my sister? I don't actually like her. They would do as they're told. And of course this will really, in a true sense, crucify them. Because as my colleague has just said, certainly in Islam, suicide is outside.

So they will be declaring themselves outside their own faith. Do we really expect them to understand enough to do that? I don't think so. My suggestion to the noble and learned Lord, Lord Faulks now is that perhaps he would grant me a meeting, because since this is not a government bill, I've taken this round to various religious centres in London, for example. This time nobody's consulted them and they would really like to be consulted because suicide is against Islam.

The question to me is why hasn't the government been to see us about

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this? So I put this forward. May I request.

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May I request. The noble Baroness to speak to the amendment, please? Yeah.

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the amendment, please? Yeah. So this private member's bill has not been discussed with the has not been discussed with the with the with the mosques in the United Kingdom in London. And I don't believe anywhere else. So my don't believe anywhere else. So my suggestion is that we have a meeting that I bring suitable people with me, and we start to open this up. It is against the faith to commit suicide, and I think it's very important.

13:07

Lord Polak (Conservative)

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I agree to a meeting. And of course, the noble Baroness should bring anybody she thinks bring anybody she thinks appropriate to the meeting.

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I want to raise this of a. 50% of a registered interest, that I'm of a registered interest, that I'm 100% deaf in my left ear. I think. I think, I think the maths works I think, I think the maths works right. Thank God. As you know, my my right ear is quite good, but my right ear is quite good, but it's also useful in many aspects of my life. When I pretended that I didn't hear it at all. But I actually support all the amendments in this group.

I wasn't going to speak, but I, I'm moved to speak to Baroness Nicholson, who I've known for many years, and her amendment 171, and I want to pay tribute to her bravery and courage that has enabled her success in her life of service to vulnerable people. And if I may say to my my noble friend Baroness Fraser her amendment 167, which she so eloquently introduced, it's been said, but her professional work with people who often cannot communicate for themselves is well known.

And I think the real point I want to make to people opposite, not opposite people who are supporting and want to rush this bill through that. This group of amendments shows the vital importance of the process that we are going through, and shows that those who are intent on trying to rush it through and rush this flawed legislation through without this sort of vital discussion, is a is a is a real, real disgrace. Actually, these amendments may affect one person who by accident, by unable to communicate, by unable to hear the wrong thing happens to them.

And this bill should be and work for every individual. And that's why I urge the the noble Lord, Lord Faulkner, to find a way, find a way to include these matters, these important aspects into the bill.

13:10

Lord Empey (Ulster Unionist Party)

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I think everybody must have been affected by the comments of the noble Baroness, Baroness Nicholson, because it is very sobering revelations of her experience, which is very broad and much to be admired. But this group of amendments, I think, 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 these amendments that specific provision be considered because of the needs of those with complex communication difficulties, whether that is, for example, hearing language, cultural challenges.

But I want to draw the House's attention to other matters which have not been addressed in the context of a busy hospital with overworked staff. I said in addressing other groups of amendments that many, many people seem to be viewing the operation of the current NHS through rose tinted glasses. Hospitals these days are not as portrayed in a TV series like the 1960s Heartbeat or Call the Midwife. Gone are the days when consultants have 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 relentless growth in our population. Meeting targets means throughput, and throughput means patients and patients out as quickly as possible. So I struggle to see how the current bill, if enacted, can be safely implemented in current hospital settings. In a busy NHS ward, consultants during their ward rounds in the mornings have only a few minutes, maybe once or twice a week, to assess a patient and give instructions to registrars and nurses as to what treatment is to be applied.

Introducing complex processes involving safety, providing the means by which patients can take their lives themselves with poisonous substances, coordinating all the relevant personnel together at the right time to oversee. This is going to be a mammoth task in our overstretched NHS. Let's look at some of the realities upon which this group of amendments draws attention. For instance, we've discussed language in London alone. I was astonished to learn there are 300 languages spoken, 1.7 million Londoners don't have English as their first language and 300,000 or more don't speak English at all.

Now, that's equivalent to the population of a city like Cardiff or Glasgow. Yes.

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I declare an interest as. A non-executive. Director of the Whittington. Hospital. Where we serve many of these

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Where we serve many of these communities. I can. Assure you, the noble. Lord. We put a lot of resource very

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We put a lot of resource very successfully into supporting our clients, supporting our patients clients, supporting our patients from whichever group they come from and whatever capacity problems they and whatever capacity problems they may have. I think that you have to live in these communities to understand. The NHS is completely aware of the need to do that. Yes.

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Well done. Delighted to hear that. But I'm also complex. I'm also very aware also complex. I'm also very aware of the pressures of a NHS possible, of the pressures of a NHS possible, perhaps not in London, but in other places where the staff are run off

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places where the staff are run off their feet day and night and we're imposing it. Come from Bradford, where all my

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Come from Bradford, where all my family live and we do the same there too. But it's not a universal situation, I can assure you. And if I may continue, there's 1.7 million numbers, don't have English as their first language and 300,000, as I said, who don't have English at all. So that's equivalent to a significant size of a city. According to the 2021 census, only 63.8% of households consisted of members who all had the same main language.

And I think Baroness Berridge mentioned the 21 census and 6% of the population, or 1.5 million houses, consisted of people who are different main languages in the same house. So those figures are five years out of date. And with the surge in immigration since, I'm sure the figures are much greater. Baroness Nicholson has highlighted the circumstances of people with hearing difficulties. But add to that, in a traumatic situation of discussing whether or not a person wishes to be assisted to die, how a patient may be able to absorb such difficult information from a medical practitioner who does not, perhaps have English as his or her first language, and vice versa, where 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. If a patient is fully informed and determined to be making an informed decision, which is the core of this legislation. So I have to say, my Lords, as this bill has been progressing and more than ever convinced that the NHS is not a suitable place for assisted dying to take place.

13:15

Baroness Grey-Thompson (Crossbench)

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My Lords, I. group 172322322A and 406, which address the requirements of accessibility, BSL and also Braille. In speaking to amendments, Baroness Fraser of Craigmaddie raised a number of issues and while I tried to put. I put all my amendments in before the start of committee. I think in her debate in. It showed some of the areas where we should still have some cause for concern, certainly around things like programmable tax and the way that it's used.

Now, my noble friend Baroness Campbell of Surbiton is not able to be in her place today, but she has raised the issue. Lucinda Ricci, who was a woman who used communication aids, had to go to a care home. The nurses were not able to set up these communication aids. And then this woman essentially became voiceless. And I think if there's one thing that the debate today is highlighted in the words of the noble Lady Baroness Nicholson, if this chamber can't provide reasonable adjustments for members, actually, I think that highlights a bigger problem that exists outside in terms of actually whether people can really understand what's going on.

So the bill takes its foundation from the Mental Capacity Act, and we have to really get to grips whether someone can understand, retain and use information. And I'm really against the process of assisted suicide being called treatment. But actually, if we can't communicate with people properly, then actually the individual might be confused in terms of what's being told. It's all been raised about New Zealand where people have to ring a phone number. Doctor Jan Snellen has said that it's completely inappropriate.

A deaf person can't ring a phone number, so might not actually be able to access the service that they want. And I do have amendments on reporting mechanisms, but I'm really keen to understand what issues also might be highlighted from these discussions. Whether one impairment group is disproportionately affected accessing this service. And that's why 406 the amendment 406, says that we need to record when people's accessibility needs are not met. Now, clause 39 D does give power to the Secretary of State to introduce codes, and I do hope the breadth and depth of debate in this group will inform that the National Down Syndrome Policy Group, as already mentioned, has said that it's essential that people are able to understand what's going on.

But the easy read document from the NHS on the Mental Capacity Act is 28 pages long and is complicated to understand, and it's difficult to get true consent when we know that people with down syndrome are already suggestible and potentially eager to please others. And we know that people with learning disabilities and deaf people already have lower health outcomes than others. It's tragic to see the case of Adrian Poulton, a man with down syndrome and dementia who starved to death in a British hospital because the doctors put nil by mouth above his bed and he wasn't able to communicate and the staff weren't able to or were not listening when he was asking for food, they just looked at the nil by mouth and assumed that he didn't know what he was talking about.

The equality impact assessment has identified that there are some areas of concern. And yes, it should be noted British Sign Language is not a direct translation of English. I do think we missed a trick when we were doing that legislation, not to go integrated depth with it, but we have to be clear about how we provide appropriate translation. Noble Baroness Lady Fraser raised about difficulty speaking. I met someone for the first time recently. We had no issues communicating at all, and it was only after about ten minutes they mentioned to me that they'd had a stroke and they felt that they were struggling to speak and to find the right words.

And you could easily make an assumption that someone's communication skills are very good, when indeed they are not. In terms of the numbers of people who are able to use British Sign Language, I think we've got some issues there in terms of there's not enough, and I accept that makaton is not a language, and it should in no way be confused. But there's about 100,000 people that use it as a communication aid. There's 1200 licensed tutors, and they train about 20,000 people annually.

I think I should have probably made that clear in the amendment that they weren't interchangeable. And if I think about it in a different context, you know, we don't and we certainly shouldn't replace Quebecoise with French or Swiss German with German. When we talked in the earlier group about Wales, I'm Welsh. I do think it's important that that we discuss these issues. I grew up in a Semi-fluent household. Actually. My mother spoke very colloquial Welsh. So while I think I understand quite a lot and it depends who speaks to me how much I understand actually my understanding and what you take from a conversation can be very different.

And that's why I'm concerned about these group amendments my noble friend Baroness O'Loan raised about the the issue of translation. In 2017, I did a work for the then government on duty of care and support. And the word safeguarding is not translatable into other languages. And even where it is, it's meaning can be very different. So I think we we need to be concerned by that. A survey by the Royal National Institute for Deaf People found that 77% of BSL users had difficulty communicating with hospital staff, and 33% left consultations with their family doctor, unsure about instructions or taking the correct medication doses.

And we we've seen in the media a deaf man was wrongly told he had HIV after hospital failed to provide an interpreter. There's a case in the states of Durlin Roberts, an American woman who famously pretended to be a sign language interpreter at a high profile news conference in Tampa, Florida, the police were announcing the arrest of a serial killer she couldn't sign at all, and experts described her interpretation as gibberish. Members of the deaf community were very upset, and a deaf mother of one of the victims of the serial killer was present and was relying on the interpretation.

You know, just think how distressing that is. But there are good examples. Saint Helena Hospice, where people who have a preference to use BSL can communicate with a single point nurses from the home by clicking the BSL live button, so it is possible to provide appropriate translation. And so deaf patients or visitors have the choice of using this. And I think we should also not presume that the person with the communication barrier is the patient. It might actually be that the doctor has some challenges in translating, understanding or indeed communicating.

And I'm delighted to learn, you know, I think through the training, you know, doctors are getting much better training on how to communicate with patients. But I do think this could be improved. The GMC guidance says steps must be taken to meet the needs of individuals, but each stage of the process is reliant on being an open choice. But if these discussions are not accessible because of a language or communication barrier, then any perceived safeguards in this bill are simply worthless.

The noble and learned Lord has said many times that he believes that everyone should have equal access to the process. But for deaf or disabled people or people who have a combination of impairments, it is really important. They are genuinely given equal access to the process and they understand every step of the pathway.

13:23

The Earl of Effingham (Conservative)

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My Lords. >> Before I speak to the substance of the amendments in this group, may I please pay tribute to the may I please pay tribute to the noble Baroness, Lady Nicholson, Lady Berridge, Lady Fraser of Craigmaddie, Lady Grey Thompson, Craigmaddie, Lady Grey Thompson, Lady Holland's Lady O'loan and the Right Reverend Prelate, the Bishop of Newcastle. They have all stood up for a particularly vulnerable group of people during this debate, and they are absolutely right to do so. The noble and learned Lord, Lord Faulkner, will be, I am sure, listening most carefully to their arguments.

So, my Lords, 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 this bill before they can access the provisions made within it. My noble friend Lord Blencathra said, we really, really need to know that an individual understands what they are doing. And Baroness O'Loan used the phrase crystal clear, and they are both absolutely right. Surely how society cares for the most vulnerable of its citizens is an unmoveable benchmark.

Society must protect people with communication difficulties. The noble Baroness, Lady Berridge, specifically questioned the government, and His Majesty's loyal opposition believes it is fair and reasonable to ask the noble Baroness, the Minister, Lady Maron, what specific work both officials and Ministers have undertaken to establish the core risks posed by this Bill to those with hearing, speech and language impediments in the view of His Majesty's government, how effective are the safeguards currently in place and can the Bill be improved? From a neutral perspective of workability, to ensure that no one who faces the challenges we have discussed in this group ends their life without being given the obvious support they need to fully understand the life changing decision on which they are embarking.

As the noble Lord Lord Winston referenced in the previous group. Often during the course of this bill, noble Lords have debated detailed provisions and address complex moral issues with a laser focus. However, my Lords, please allow me to suggest the question at hand is not a complex one. Those who are not able to understand the situation without proper support must be provided with that support. If they are to take the decision to end their life, surely that is non-negotiable.

The noble Lord Lord Shinkwin said. We have to think differently and challenge the noble and learned Lord Hall Faulkner to lead by example. The right reverend Prelate, the Bishop of Southwark, took the words out of my mouth when he said he remains hopeful that the noble and learned Lord, Lord Faulkner, would agree with this line of thought and will commit to engaging collaboratively with all noble Lords whose amendments in this group aim to implement the right and appropriate protections for this vulnerable body of individuals.

13:27

Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)

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And my Lords, I'm most grateful for the debate that we've had at today and in keeping my comments limited to amendments on which the government has major legal, technical, operational workability concerns, I will first turn to amendments 171A and one seven for a table by the noble Lady Baroness Nicholson. The duty outlined within these amendments may prove difficult for doctors to discharge, as it is ambiguously drafted and uses undefined terms such as religious, cultural or sex based barriers.

It is also a mandatory duty which does not afford discretion to the doctor to refuse unreasonable requests. My Lords, the duty to appoint an advocate does conflict 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 House may like to 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 and experience of relevant safeguarding issues, and who must be the same sex as the person seeking assistance.

Introducing a more extensive mandatory duty for 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. Turning to amendment 322, tabled by the noble Lady, Baroness Grey-Thompson, the amendment introduces a mandatory duty on the coordinating doctor, which 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 may 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 2620, open brackets, six close brackets, as well as General Medical Council guidance.

And I would say to a number of noble Lords, including the noble Lord, the Earl of Effingham, that the. A number of the questions actually are very much policy questions for the sponsor and for Parliament to decide. However, as I've said previously, should the bill pass, the government will work to ensure that it is delivered. My Lords, for the other amendments in this group where 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, and so the drafting may not be fully workable, effective or enforceable.

13:31

Lord Falconer of Thoroton (Labour)

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And I'm very grateful to the noble Baroness Baroness Hollins and noble Baroness Baroness Hollins and the noble Baroness Baroness Nicholson of Winterbourne for sharing with us experiences of, in the case of the Baroness Nicholson of Winterbourne, the death of her mother and the circumstances of her mother's life, and in the case of the Baroness Hollins, the circumstances of her husband's later illness. These amendments concern ensuring that people with either communication difficulties, hearing difficulties or particular cultural pressures are properly able to access assisted death, but also and very much picking up the words of Lord Effingham that they should only have an assisted death if it's crystal clear that they have understood everything and it is informed consent.

I pay tribute to the Baroness Fraser of Craigmaddie for the intelligent and sensible way that she introduced the the amendments. And could I also underline that I think everybody in the House would be of the view that the two aims are no discrimination, absolute clarity that somebody has agreed. And that's the basis upon which I, as the sponsor of the bill, approach this matter, could. Ideal, first of all, with what the current bill and my amendments make provision for. First of all, in clause five, it refers to a registered medical practitioner conducting a preliminary discussion with the person.

That practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters. We take the view that that is an inadequate clause because the assurance is not in the communication, by which I mean you've got to ensure there is effective communication, not you've got to ensure there are reasonable adjustments, because who knows whether or not the reasonable adjustments would work. So for that reason, we have changed that clause and the parallel clause in clause ten to say, and I could, if I could take noble Lords to our amendment one seven.

Oh, take all reasonable steps to ensure that there is effective communication, and I am sure that is the right way to do it. Don't focus on ensuring they've got to take the steps. Focus on ensuring that there is effective communication. Now I lay emphasis on that because the noble Baroness Fraser said, well, those amendments make it less safe. They do not. They make it more safe. And I hope that the noble Baroness, having heard what I've got to say, will see that actually I'm trying to achieve what she quite rightly is trying to achieve.

Now the second the second method by which the noble Baroness rightly seeks to identify. How does one improve this is by ensuring that there is a that there is an independent advocate or somebody who's got the ability to deal with the communication difficulties of the sort that she proposes, and that is her amendment five, four six and her amendment five, four, six ensures that you are entitled to an independent advocate. If there is somebody. If you've got communication or speech difficulties, I hope that the noble Baroness will be persuaded that if you look at my amendment 548A, which sets out in detail by amendment the circumstances in which a independent advocate has got to be made available, got to be made available.

And if one looks at subclause eight, I'm sorry to go through this at speed, but I've got no other options. If you look at clause eight, who is entitled to a qualified to an independent advocate, it is a person who, if you look at little B is in substantial difficulty in doing one or more of the following communicating their views, wishes or feelings, whether by talking, using sign language or any other means. So we have sought to do the same thing as her five, four, six.

Proposes. Now I don't invite her to to agree or not at the moment, but I very much hope she looks at that, and I hope she also agrees that we're all trying to get to the same end, because I completely accept the way that she framed the issue, which is people who have got the sort of communication difficulties that she referred to, and the noble Lord Lord Moore of Etchingham referred to. I'm sad not to see him in his place at the moment, but no doubt somebody will tell him.

It was exactly that sort of that sort of issue that he was dealing with as well. So I'm I'm with her in relation to this, and I hope she'll be satisfied that I've dealt adequately with the the position in relation to the noble Baroness, Baroness Nicholson of Winterbourne, when she says in relation to clause five, make sure there's an interpreter. And then she adds the words or amanuensis in relation to it. Again, I hope she'll take the opportunity of looking at my client clause 548 and see.

I think it will cover people who are deaf. But again, if she is not satisfied with that, then by all means I will be more than happy to meet her. But I hope that she will be satisfied in relation to that. That deals with people with difficulties in communication and hearing difficulties. Could I, could I turn to the to the people who are under cultural, religious or pressures from their sexual identity? I completely understand because I've had the benefit of conversations with Baroness Nicholson of Winterbourne, who put to me the following example somebody who is a woman of a religion, where if you were to have an assisted death, your religion would tell you that you would suffer in hell ever after.

But you're doing it because you are being pressured by a man who you are used to taking orders from. In effect, the question I think, is not do. Does one make special provision for that? The question is do our five layers of safeguard provide protection against that? And I believe that one doctor, a second doctor, the first doctor's got to look at it again. The panel, the first doctor's got to look at it again, will identify those cases.

So again, I'm very I'm understanding of what the noble Baroness says. And I hope that I have have, by the provisions of safeguard that we've put in covered them. Then the final group is the group from the Baroness Grey-Thompson. She says that she wants amendments which say that in relation to the report that the first assessing doctor's got to give, it should be in the language and in the format that is accessible to the person getting it. Completely agree.

The clause makes provision for the Secretary of State to make regulations about all of those matters, including that, and I would expect those regulations to deal with that.

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Sorry, the noble Lord has not, I think. Thank you. Thank you. Yes. In relation to

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Thank you. Yes. In relation to Baroness Berridge point, which is to say, there should be an absolute to say, there should be an absolute exclusion on interpreters under 18, she makes the point that involving, she makes the point that involving, for example, a person under 18 who is, for example, the child of somebody who is going through an somebody who is going through an assisted death, it would be wholly inappropriate for them to deal with that. Again, I am I do not think we should provide for that in the bill.

I think it should be dealt with by code of practice. I can envisage circumstances in which somebody who is terminally ill, who does not speak English, who is only comfortable with their 17 year old child being the interpreter, and I would be not in favour of an

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absolute exclusion in those circumstances. Just ask the Noble and Leonard Wood to clarify, though, is he Wood to clarify, though, is he saying that a mandatory exclusion would be in a code of practice? would be in a code of practice? Because that is not we can't do that unless it's on the face of the that unless it's on the face of the bill. And and I think that in relation to the latter point, I think we just have to agree to differ that actually the safeguarding issues in relation to a 17 year old.

But it might be. Would he be agreeable to 16 being the cut off and mandatory.

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I am. Not in favour of a mandatory bar on any particular young person. I expect it to be dealt with in a code of practice. I do agree that unless there is a mandatory unless there is a mandatory provision in the bill, it will not be effective, but I am not in

13:41

Baroness Fraser of Craigmaddie (Conservative)

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favour of that mandatory ban. >> My Lords, I'd like to thank everybody that spoke in this debate, everybody that spoke in this debate, and I'm very conscious that I stand between you and your lunch, so I will try and sum up quickly. I think I think the point that we're all trying to get to, I agree with the noble and learned Lord. We're all trying to ensure the same thing. But I suppose what I'm disappointed by in his in his response and pointing to his amendments around the right to to an independent advocate, that's only one small part.

My amendment one six, whatever it was, seven, nine, whatever, whatever number. One, six, seven. Thank you. Was really about seeking assistance in the preliminary conversation. And the reason for that is the understanding that, you know, frankly, as my noble friend Lord Shinkwin so eloquently said, it's about thinking about the process from the from the perspective of the person with with the communication issues. And I just want to say, any of us might find at any moment in our lives, we might find ourselves through illness, through accident or through frailty in this position.

So actually turning the tables and thinking about, you know, how we would feel going through this process and the preliminary conversations is really important. I just want to just quickly give examples of why words really matter and why it's not just about independent advocates. We've got a 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, many people have been able to access Aids, but not the support. And that was really the sort of essence of my. Probing, if you like. But the noble Lady Baroness Hollins mentioned about training that, yes, people are trained to support an independent advocates might be in that in that camp, but it's it is it tends to be very basic. If you consult with the Royal College of Speech and Language therapists, they are extremely concerned in this space about the numbers of professional people available to support this group of people.

And, you know, the other thing is that, you know, clarity, clarity is absolutely important all the way through the process. I'm conscious as as time goes on that I can't mention everybody. But you know, the point about language being either mediated by someone else, culturally shaped or indirect is what will cause an issue at any point in the process, and therefore having support for people with severe communication issues for, for, for other issues. I pay tribute to my noble friend Baroness Nicholson.

We must surely do all we can to ensure that the decision of a person to end their own life is truly that of the individual, and

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not simply a miscommunication. I wish to. Add my thanks to the Noble and learned know the Minister, Lord Faulkner, for his comments and look forward immensely to the meeting with him. But may I also point out with him. But may I also point out that his colleague on the Prime Minister stood up and said something about me, and of course I couldn't hear it. Hearing is a very difficult thing to ignore, and I sincerely hope that his amendments will cover that.

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will cover that. Is it your Lordships pleasure. This amendment. Be withdrawn? Amendment is by

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leave withdrawn. My Lords, we have agreed noble Lords would benefit from a short lunch break. I think they deserve. I therefore beg to move that the Committee do now adjourn for 40 minutes. Will therefore return to the Bill at 1425.

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The Committee stands adjourned

13:45

House Adjourned During Pleasure

In In clause In clause five, amendment 168, Baroness

14:25

Amdt. 168 Baroness Grey-Thompson (Crossbench)

14:35

insert at which an independent advocate must be present. I have tabled two amendments. >> Lord Falconer of Thoroton has.

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Tables five four Aytay, which completely leaves out clause 22. I think it could be useful to hear from him early in this group, recognising he hasn't answered questions on advocates in the past because of this amendments tabled. because of this amendments tabled.

14:36

Lord McCrea of Magherafelt and Cookstown (Democratic Unionist Party)

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14:46

Lord Falconer of Thoroton (Labour)

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14:50

Baroness Hayter of Kentish Town (Labour)

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Lord Oates I wonder if, >> Lord Oates I wonder if, following that, I could raise the question. I'm concerned about whether I have read amendment 553 correctly in the name of Baroness Grey-Thompson. She did say at the end that maybe not all her amendments were perfectly drafted, so I may have misunderstood it. But as I read that at the moment, which would follow after the. The new, if you like, clause 22, as my noble friend has just said, the.

Any person, not just a qualifying person, but any person between the ages of 18 and 25 wishing to receive assisted dying must receive consent from a parent or guardian and accompanied by an independent advocate in addition to the parent or guardian, I think. I think I'm correct in reading that as everybody, not just a qualifying person. My Lords, the idea that someone at the age of 25 still needs a parent or guardian, even if they know where their parents are.

And I mean, partly, maybe because I was brought up in the forces I know of people who have taken major life and death decisions by the age of 25, in charge of military units at war. I have known, and in fact, I see some around the house 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 which means I would never have children.

I know of surgeons who, before the age of 25 in surgery, have taken decisions of a surgery, have taken decisions of a life and death momentum. I am really surprised that we're writing into this bill that people who will have in their lives, there will be people now sitting on the bishops bench who will know of circumstances where big decisions are taken by people well below that age, but suddenly they're terminally ill, they're dying. And at that point, we see, say, someone up to the age of 25 has to locate a parent who they may not have seen for years.

And in addition to the parent, has to have an advocate with them. I find an extraordinarily devaluing of ordinary human life and the ability to take decisions. Now, as I say, I could have misunderstood the amendment, and Baroness Grey-Thompson was, you know, correctly said she made often drafted it correctly. So it may be this should only apply to a qualifying person and not all people. I still have my doubts that we really need to treat adults as if they are really young children.

14:53

Baroness Cass (Crossbench)

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I. I'm right to speak to a number of amendments in this group. I can be briefer on some because the noble and learned Lord Faulks has copied some of my homework and taken it as his own, which I take to be a good thing. But when I first. Acknowledging that. Not at all. When I first saw the term independent advocates in the bill, I worried because my. I have had some very negative experiences in my clinical career as a Neurodisability consultant 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.

And some of their behaviours were frankly coercive. And I know my noble friend Baroness Hollins will have similar experiences and stories to tell. But advocate does mean different things to different people. And in the Mental Capacity Act, the role is to support people, to have capacity, often in the context of the need to make decisions, to have life saving treatments. And that's clearly not what we're talking about here. So my, my amendment to clause four B, which will now may, may now be academic because clause 2022, four B because the clause is disappearing was to try and frame it as people having difficulty accessing information about decisions they need to make for the purposes of requesting assistance and communicating relevant matters.

So it did narrow it down to a communication problem in the widest sense of the word. I am slightly concerned in the new amendment from the noble and learned Lord that it does also include retaining information and using and weighing information as part of the process, because I think it's very hard if someone is not retaining information that anyone can help them to do so. Otherwise, people who are suffering dementia or memory loss would be able to be facilitated to remember things which possibly they can't.

So I think if somebody doesn't have capacity, it's hard to see how an independent advocate can facilitate them to have that. And that's certainly not what we would be wanting them to do. So I'm slightly concerned about that line in the in the New amendment, but in terms of what that independent advocate should do, I think Lord Faulkner and I are on the same page in that it should very much be about facilitating the effective participation of the qualifying person in relation to the provisions of the act, where otherwise their communication needs would impede such participation.

So it is acting to support communication, both understanding and communicating, but not deciding or representing or driving a particular view. Lord Sandhurst who's not able to be here today? And I have our names on an amendment that said this should not be a relative or carer or someone with professional responsibility for obvious reasons, because de facto the individual should be independent and should be an individual with training. And within that training, it is important that they are able to recognise coercion, domestic violence and many of the other issues that we have discussed recurrently in this House.

So in summary, I think that certainly my amendments on the role of the independent advocate are subsumed in the new replacement for clause 22, but I'm still have some concerns about who qualifies.

14:57

Lord Weir of Ballyholme (Democratic Unionist Party)

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My Lords, I rise to. >> Move my amendment. 553B it's one of a range of amendments that I placed across what have been then put into a number of groups, trying to deal with some of the concerns that have that have been raised by disabled people, and to try to provide what we've got, the high level of of safeguards. Now, I think my amendment has a level of overlap with a range of other amendments within this group. And I think a lot of us are coming from a very similar position.

I suspect, irrespective of our broader attitudes towards the bill as a whole. As such, I'm not suggesting that my amendment will cover all aspects, because I think one of the areas which I think, apart from I think one reference within this amendment is I think we do need to get our heads around how the independent advocate is selected and who, if you like, can necessarily be drawn from. But in the interest of time, I will restrict my remarks purely to my amendment and let others make the case for theirs.

My amendment ensures that there is the availability of an independent disability advocate with, I think, with appropriate expertise, and I think that is as close as I was able to get to defining this. That must be provided by the Commissioner, and it is to any disabled person within the. Within the meaning of section six of the Equality Act 2010. Now, the point in relation to this is that, first of all, it is the opportunity for anybody. Oh, sorry, I couldn't possibly indicate.

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What number amendment you're talking to. So I mentioned I think it's

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So I mentioned I think it's 5553B on that basis. And that also is part of that. Then the is part of that. Then the commissioner also offers a reasonable opportunity to consult for the person, to consult that for the person, to consult that advocate before any decision is made. Now, the point, I suppose, made. Now, the point, I suppose, and then flowing from that, there would then be recorded in written reasons, whether that meeting has taken place, whether that offer has been taken up, and also then arising out of that, whether then there have been any concerns that have arisen from that level of contact.

Now, the point in relation to this is that the qualification, first of all, should be for those who are disabled. And it's not simply a question, then of a commissioner picking and choosing who they feel fall into that category. But I think, which I think even the advocates, particularly of the bill, would say, if this is based upon the idea of autonomy, autonomy is very much at the heart of this amendment, because it is a question of that. It must be provided to be offered the opportunity for a disabled person to say, actually, I do not want to have that advocate.

I do not want to meet that advocate. It is a matter for their choice on that basis. And so therefore it's not being forced upon anyone, but the availability of it is being guaranteed by that. I think it is important because we know that an independent advocate can do a number of things. Mention has been made already about the dangers of, particularly people with communication difficulties. And if we are dealing with what is a very sensitive subject, getting communication wrong can be critical. There's also, I think within many disabled people, there could be there could be issues around misunderstanding.

And I think it is important that we have a situation in which people do realise that there are other options, and I think to have that independent advocate is critical. It can also, I think, provide a level of safeguard because within those levels of discussions can also be a degree of failsafe as an additional step to try and detect whether there's been any level of coercion that has taken place, and that is explicitly mentioned within that within the amendment. Now, this is a position which is endorsed by both the UN Committee on the Rights of Disabled People who have spoken.

I think of the fact that, particularly if we're getting a situation for disabled person, navigating a high stakes and deciding whether a life should end or not is about as high stakes as you can get when there are complex legal and medical processes, no matter how much there are attempts to try and insulate those, that if there is that denial of support to that person, that can then lead to a form of discrimination against them and leave the issue vulnerable. Similarly, I think the Equality and Human Rights Commission have indicated that for disabled people, where there is an opportunity for that additional level of support, it can be deeply empowering to the individual.

I think the case for an independent advocate is one which I hope the House will endorse strongly, because it is a very major concern that is there from disabled groups. Demos have done a number of focus groups amongst disabled people, and one of the concerns that keeps on coming back is a belief of, of, of a worry, not simply of coercion itself, but that either family or indeed the medical experts dealing with this will provide, if you like, assisted death simply being the sensible option that they will be advocating for that.

To have someone who is there, therefore, who is completely independent, who doesn't have any particular views or axe to grind, but is there to simply talk through the issues with the disabled person I think is critical. And can I say also in conclusion in relation to this, it is part of a wider concern. This amendment, which was one which I am moving today, has been one which has been drafted by disabled people. And I think that one of the issues within this.

And I think there is a frustration amongst many disabled people out there that this is a bill being done to them, not with them. And as such, I think we have well, I think within this House we try and channel those voices. There's a danger at times that we take away those voices. And I think it is important, with this amendment and many other amendments that are being motivated by disabled groups and disabled people themselves, that we don't turn a deaf ear to their concerns.

We actually listen to what is there, and we actually enact a range of concerns on that basis.

15:04

Baroness O'Loan (Crossbench)

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15:14

Baroness Hollins (Crossbench)

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Baroness Browning is not in her place, she asked me just to place, she asked me just to introduce her amendment 538, to which I added my name. And it's worth it. Just simply says or would require the Secretary of State to consult disability rights organisations and the Equality and Human Rights Commission before making regulations, and 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, and this feels like a bit of a gap, and several disability organisations have raised real concerns about the bill and have complained about a lack of meaningful engagement, despite probably being most at risk if things didn't work out quite as the noble Lords sponsor hoped.

And this is why they should be consulted when regulations are being made seems to make sense.

15:15

Lord Gove (Conservative)

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My Lords, I rise to move. Six >> My Lords, I rise to move. Six amendments introduce six amendments in the name of my noble friend Lord Frost Lord Frost sends his apologies to your Lordships' House. He's unavoidably detained. He hopes to join us during the course of the debate before 6 p.m. But in his absence, given that these specific amendments relate to the role of neutral advisers and have been bracketed along with the debate on independent advocates, I am taking Lord Frost place.

The role of neutral advisers is different from the role of independent advocates, and it's important to draw that distinction. So far, we've been discussing the particular provision that independent advocates can make in order to ensure that those people 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. And it is to the noble and learned Lord, Lord Falconer's credit that he has listened to concerns that have been expressed and has put forward his own amendments, which are there in order to ensure that people living with disabilities or other conditions can have the support that it is believed necessary at that stage in the process.

And we've heard a number of concerns expressed by noble Lords about whether or not Lord Falconer's amendment meets the requirements that have been expressed. But nobody can be in any doubt that the noble and learned Lord is sincere in his desire to meet those concerns. Neutral advisers relate to a separate part of the process, and they relate to clause five, subsection six. Here it states that a registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection three.

That's the preliminary discussion with someone who may seek an assisted death is not required to refer the person to another medical practitioner, but must ensure that the person is directed to where they can obtain information and have the preliminary discussion. This raises a profound concern. The expectation generally would be that the point of contact and the point of authority for anyone seeking this immensely significant procedure would be a qualified medical practitioner with the academic expertise and also bound by the ethical codes that medical practitioners have.

Now, quite understandably, there will be many medical practitioners who will not wish in conscience to fulfil that function. And we know that, as it happens, there is not a single Royal College that endorses the bill. Summer studiedly neutral, but it is undoubtedly the case that there is, at the very least, a substantial minority, at the very least of medical professionals who do not wish to discharge that function, but who will someone else be? Who will someone be directed to at that stage? The bill does not specify that whoever is in receipt of that direction should be appropriately qualified.

And indeed, in the original legislation as introduced, it was not intended to be the case that the person was directed to where they could obtain information, but referred. The word referred was taken out not because it was a minor quibble on the part of those who objected to the word. The word was taken out because representative medical organisations, including the GMC and others, said it is quite wrong to talk about referring. A GP refers you to a consultant when it is in the GPS view that your medical and health interests are best served by another medical professional.

Direction is something else. It is a lesser and less authoritative and less safe process. That's why the word is there. What Lord Frost seeks to do in his amendments is simply to ensure that those to whom the the patients, the petitioners are directed are individuals who have both the authority, but also the neutrality and the detachment to offer unbiased and authoritative advice. And it is important that not only do they have that expertise, but also that independence, because a number of the amendments that Lord Frost has laid down are there specifically to chart the operation, or those people who are providing that advice and to ensure that there is a proper log in or register of their operation and the advice given, because, as Lord Frost has pointed out, at other times, if we look at other jurisdictions, we can see sometimes that there are some doctors and some figures who become, as it were, the.

Most energetic, most determined, most implacable advocates of assisted dying and the most generous providers of that service. And one of the concerns that Lord Frost has, which I share, is that some of those people to whom individuals are directed will be those who are ideologically committed to a particular end, rather than those who are governed first and foremost by patient care. Now, it may be that there are appropriate ways in which those who are in receipt of direction can be held to a high ethical code can be required to be independent, can be mandated to have certain expertise.

But the bill is silent on what the qualifications or the monitoring mechanism for those would be. On a previous occasion, I asked the noble and learned Lord Wood if the regulations in this bill or the provision for regulations allowed for the future creation of a national assisted death planning or advisory service, and the noble and learned Lord Wood said that they might. But he did not envisage that. Now we might consider the provision of such a service a terrible step forward, or we might consider it to be a necessary adjunct to the freedoms that the Bill seeks to create.

But at the moment we have a gap. We have the promoter of the bill saying, I don't see the need for such a national service. I don't see the need for any means by which we can govern, control, support, the provision of advice. And yet at the same time, the bill explicitly states that people will be directed to those who will provide that advice, who are guided by no code of ethics, who are not held to any particular professional standards, and who could be advocates for an ideological outcome, which is not in the patient's interest.

I'd be fascinated to know what the noble and learned Lords view is of Lord Frost amendments. I know that he consideration.

15:23

Baroness Lawlor (Conservative)

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My Lord, I'd like. >> To follow. >> My noble friend, Lord Galvez. Able introduction of Lord Frost's series of amendments, and add a few series of amendments, and add a few words as to why the amendments in Lord Frost name are particularly important, giving a little more detail on some of the individual amendments to supplement that of my noble friend Lord Gove and Lord Frost amendments. Hang on there. Being a neutral advisor to whom a person is directed, and if the general practitioner, the medical practitioner in the bill is not, does not feel willing or able to discuss assisted dying with them, the amendments ensure that the information will be provided by somebody who is neutral.

They must keep and report a record of the advice or information given and the date to the commissioner within five days. That's amendment 195. They must be an organisation designated as such by the Secretary of State by regulation, in consultation with the Commissioner. Amendment 196, and they must be required to make a declaration, as we have heard, or that they have no potential conflict of interest. I summarised their. But either as an organisation in virtue of employing or having volunteers on the books who have in some way or another been associated with promoting been associated with promoting assisted dying, and I'm glad to see Lord Fox, perhaps.

I shan't be corrected by the teacher here, but, for instance, by supporting. In principle, if the organisation supports in principle assisted dying. If it does so politically or ideologically. If it does so by means of advocacy, employment, or in any way making money from it, we can think of lobbyists and PR firms who are acting for such organisations. Net neutrality matters and it must be established, particularly since we are dealing with a publicly funded service in the name of and provided by the state.

The Bill, as it is, stands open and to an ever expanding bureaucracy. Bureaucracy itself is likely to be likely to be self-perpetuating. There is a danger that those involved may be fervent advocates of assisted suicide. They may be or may have been associated with those organisations advocating it, or they may be lobbyists. The bill, as it stands, allows the GP to initiate the prospect of an assisted death with a patient, one suffering from a terminal illness and perhaps planting the idea.

But if the GP does not want to enter into the discussion of an assisted suicide, the Bill opens the prospect of the patient being referred to someone who will Lord Frost amendments will ensure that if the bill becomes law, assisted suicide in the UK does not become a state dying service, as has happened as some fear, including many physicians over there in of financial support and or lack of palliative care. And these amendments will ensure in this country that this someone to whom a patient is directed, when a doctor doesn't want to discuss it with them, will be neutral and not have an interest in promoting it.

15:27

Lord Brooke of Alverthorpe (Labour)

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My intervention will be brief, >> My intervention will be brief, and it's addressed to the noble and learned Lord. It's about his amendments. Could he say if he amendments. Could he say if he believes his amendments will ever be adopted and incorporated into a piece of legislation that will be passed in this session? Not not not yet. Sorry. And if in fact, as we're reading many observations in newspapers and in the media, this is unlikely to be adopted, could I therefore address a question to my noble friend, the Minister on the front bench and ask why we are 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, in fact, be implemented.

15:28

Lord Goodman of Wycombe (Conservative)

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So I have four amendments in this group. Two of them cover ground already explored by other noble Lords. So I won't go over that ground again, but we'll simply that ground again, but we'll simply move two of them. Which amendments? Five, 4OA and 862C and I'll deal with the latter amendment first. 862C actually relates in subject matter to the amendment 459A that the noble Lord, Lord Faulkner, described to noble Lords a few moments ago, which he brought forward in response to the concerns of the Delegated Powers Committee.

And as others have said, that's very welcome. What my amendment would simply seek to do is ensure that the regulating regulation, making power in clause 22 of the Bill is subject to the affirmative resolution procedure. After all, this is a more exacting procedure. I would have thought it appropriate. If the noble Lord thinks it isn't. Perhaps he'd like to explain why, when he responds to this debate. Amendment 54OA concerns the matter raised earlier in the debate by the noble Lady Baroness Cass, which is training in the impact assessment reference is made to training for healthcare professionals and three levels of training are set out in the impact assessment tiers one, two and three.

Tier one is a 90 minute e-learning module and six minute online interactive session with the facilitator. It's the lowest level. Then there's tier two. Tier three 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. So my question to the noble Lord Bichard be grateful if he'd answered when he responds to this debate is given the importance of the role of the independent advocate, is it not necessary for training to be at the highest level? Would not say.

The tier three training set out in the impact assessment be appropriate? If it isn't, what other training does he think might be appropriate? I'd be grateful if you would give his view when he responds to the debate.

15:31

Baroness Coffey (Conservative)

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I Lord Stern I'm. >> I Lord Stern I'm. >> Very grateful to the noble and learned Lord for setting out his new amendment seven, 48A and 749A as well, recognising and being positive for the feedback about trying to put something forward, something somewhat more detailed on the face of the bill. I think one of the reasons I've tabled A549B is because it was actually aspects of 549A was starting for me, particularly thinking in terms of three.

And I appreciate I might be in a different place to many noble Lords on this particular issue. I fear we might start to overcomplicate what is needed in the role of an independent advocate. And one of the reasons I put my amendment in is that you do no more than ten a year, is I'm somewhat worried this is going to become almost like a new industry of people undertaking these roles solely on this. I'd be concerned about training and regulation when I'm conscious.

The whole purpose of this was to address the concerns that people, as the conditions set out, for the reasons that somebody may have an independent advocate is something that does happen in general life, but it was intended to be a somewhat of a safeguard. So that that person applying, making the application, going to see the doctor face to face. Although we've discussed issues to do with face to face in previous elements, I fear that we might be somewhat complicating what the role of the independent advocate will start to become.

So that's why I've just put five for my amendment to 549A as in 549B is to try and get a sense of what really is this role, who's going to fulfil it. And that's the purpose behind that amendment five four, nine C is pretty straightforward. The table office said they didn't catch the fact that I don't think there was anything ill intentioned in this regard, but when one clause was being removed, which had a provision for regulations to undergo resolution of each House parliament, it simply got missed out in the new amendment.

And I'm sure that the noble and learned Lord will want to make sure that any regulations are actually considered by Parliament during the case of any future prospects of legislation.

15:33

Lord Blencathra (Conservative)

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I had an amendment in this group, but I withdrew it when I saw that other noble Lords had tabled an other noble Lords had tabled an amendment which was superior to mine. So I rise to support some of the amendments and also to express my concern that the new clauses proposed by the noble and learned Lord Doyle Faulkner and I agree with my my noble friend Lord Gold. There is a sense of decency and integrity. He has sought to bring forward a new clause which was superior to the old one.

Nevertheless, I feel it falls short of what. What is. What is required to protect the most vulnerable people who need assisted dying? Now? The new clause presents an 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, when one listens to the evidence from those who work daily with vulnerable adults, it becomes clear that these clauses are a bit inadequate, they're a bit underpowered, and I feel they're structurally incapable of doing the job.

Parliament has been told they will do. The first fundamental question is that they advocate and advocate envisaged in these clauses is not 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, that's 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 clauses allow the advocate to be embedded within it.

As one commonly reported, this risks creating a supportive facilitator, not a safeguard. Another warned that the advocate will become a procedural escort through the system, rather than a defender of the person's rights. By Lord Storey Lord Ricketts role is to challenge, to probe, to question, to stand up for the person when others may be steering them. Then they cannot be beholden to the very bodies that may need to challenge. The second problem is that the advocate is given no meaningful powers. They cannot pause the process, pause the process.

They cannot require further assessment. They cannot insist on a specialist review. They cannot demand that coercion concerns be investigated. They cannot even require that their own concerns be acted upon. And an advocate without powers is a spectator and not a safeguard. My Lords, the role has been described as a blocking presence, someone who can be noted in the file but whose objections can be politely ignored by Lord Oates. If the advocate cannot intervene when something is wrong, then the safeguard is a fiction.

It is a comfort blanket for legislators, not a protection from the vulnerable. And the third floor is timing. Under the noble and learned Lord Doyle Faulkner's clauses, the advocate appears after the key clinical assessments have been completed, after the capacity determination, after the voluntariness assessment and after the eligibility decision decision. By the time the advocate arrives, the train's already left the station. How can it be a safeguard when it's applied at the end of the process, when the opportunity to identify coercion or impaired capacity is largely passed? This is a final courtesy call, not a protective intervention by Lord Gove the advocate is to protect the vulnerable.

They must be involved before the decisive assessments, not after them. Then there's another weakness. The advocate is not even required to meet the person in person. They may rely on paperwork, remote contact or second hand information. How can one detect coercion, fear, confusion or subtle pressure through a file? Note how can they test whether the person is speaking freely if they never see them face to face? One safeguarding speciality specialist put it starkly if you do not meet the person, you're not an advocate.

You're. You are a merely a reviewer of documents. That's not a safeguard. It's an administrative gesture. Also, the advocate, as we've heard, may not be trained for the complexity of assisted dying. And this raises questions about the competence advocates and other statutory regimes, such as the Mental Capacity Act, are the correct receive training for those specific frameworks. And yet the noble Lord, Lord Faulkner clauses require no contain no requirement for specialist training, accreditation or expertise. Therefore, we could end up with advocates who are well-meaning but completely out of their depth.

As another commentator said, this is a role that requires a highest level of safeguarding skill, not a generic advocate with a generic toolkit. If the advocate is to stand up, is stand between a vulnerable person and an irreversible act, they must be equipped for that task. And finally, my Lords, that there's a danger that the advocates can be used unintentionally to legitimise decisions made under systemic pressure. We all know the pressures care home beds shortages, hospital discharge targets, workforce gaps, social care rationing, family exhaustion and the subtle but real pressure to not be a burden on people.

And one expert warned that an advocate without power, thus becoming a witness to system pressure, not a counterweight to it. The advocate cannot challenge the system. The system will use the advocate to validate its decision. And that, my Lords, is the opposite of safeguarding laws. I do pay tribute to the noble Lord, Lord Faulkner. His clauses are well intentioned. He is sought to deliver on what the Delegated Powers Committee said, but as I've said, I believe they are structurally inadequate. They create the appearance of protection without the substance they offer, the language of safeguarding, without the mechanics.

They asked, giving Parliament false reassurance as leaving vulnerable people exposed. If we are to legislate for assisted dying, an irreversible act taken by people who may be frail, frightened, isolated or under pressure, then the safeguards, my Lords, must be real, not rhetorical.

15:39

Baroness Finlay of Llandaff (Crossbench)

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It's a very interesting group of amendments, because it seems that we have two separate things going we have two separate things going on. We have the neutral advisor of the noble Lord Lord Frost, who I think unfortunately arrived too think unfortunately arrived too late to be able to speak to his own amendments. But they have been spoken to, and the other is the independent advocates. I would have to say I share some of the concerns about the amendments tabled by my noble friend Baroness Grey-Thompson, but I also have some about the amendments that the noble learned Lord the bill sponsor has already spoken to, whereas those in the.

Proposed by the noble Lord, Lord Goodman, certainly seem to fulfil an important role and have a narrower scope. The. If I might say briefly about the neutral advisors, that role does seem to be compatible with the scheme that I outlined last week at the beginning of proceedings. And 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. Turning now, though, to the independent advocates, the intention is obviously that disabled people and those with learning difficulties are supported through a very challenging process at a time in their life.

But there is a risk that these independent advocates become enablers who function a little bit like the sweepers in curling, sweeping away blocks and smoothing people's passage towards an assisted death. And the advocates must be advocates for the patients, not advocates for assisted suicide. The way that the amendments are written by the noble Lord, Lord Faulkner, I fear that the advocates behaviour could actually be influential as opposed to independent, because the role doesn't appear to be independent of the wider voluntary assisted dying service to whom they will buy.

If I have understood correctly, to whom they will be managerially and professionally answerable. But I may have misunderstood that because the way that they're appointed and who they're answerable to and who employs them is important. So it would be very helpful if that could be clarified. The that there is certainly does seem to be a gap here that the proposals are designed to fill and are in response in the in the reply that the noble and learned Lord gave to the Delegated Powers and Regulatory Reform Committee in his paragraphs 13 to 18 and he certainly had tried to to address the issues raised.

And we've now seen these amendments, I wondered, and perhaps the noble Lord, Lord Faulkner, could clarify whether the role that he drew on was in fact, based on the role of independent mental capacity advocates, but with their role extended, because obviously having capacity is an essential qualifying criteria under this bill, because the independent mental capacity advocates also have a safeguarding role, which is very important. And conversely, the independent mental health advocates who were created through the Mental Health Act Act for individuals who are or were detained under mental health legislation, regardless of their capacity.

But I think it would be helpful to understand how his amendments were formulated because of some of the criteria in the wording of his amendment that relate to the way that mental capacity is assessed. And I raise this because giving the difficulties of capacity assessment and the current section three of the bill, which, as I've previously argued, is unsatisfactory, it would seem important that these people fulfil the role adequately, and they should have a specified minimum training in end of life law, disability rights expertise and capacity assessment itself.

Coercion, detection, palliative care and ethics. So in the other place, the Minister raised issues that need to be resolved and I noble and learned Lord Maude Faulkner, how his amendments will address these. Basically, who would be obliged to ensure that the independent advocate is present and the precise nature of obligations around their appointment? And is the advocate entitled or have to be present in the room during all discussions? How will a person be determined to be a qualifying person? As a definition seems quite broad and encompass a wide range of people with varying support and advocacy needs? Who will pay the advocates and how would they be funded? And most importantly, what assurance is there that the independent advocate could not take on the character of someone hired specifically to support vulnerable people to seek assisted suicide, rather than simply support them in their decision making as they explore the option.

So, my Lords, we're here to make this legislation safer. And while the bill is before Parliament, it would seem irresponsible to leave lacuna like this open or completely unplugged. And that is also the concern over the regulations being left to an unknown in the future. Secretary of State.

15:45

Lord Jackson of Peterborough (Conservative)

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I rise very briefly to touch on >> I rise very briefly to touch on two points, prompted by both the noble Lady Findlay and my noble noble Lady Findlay and my noble friend Lord Blencathra. And in a sense, they're a challenge to the sponsor, the noble and learned Lord. I think I might, in saying that he was a lot more definitive in his language. In the committee proceedings last week on the 13th of March, about the need for the independent advocate to actually be present during discussions with the particular individual seeking to access the service.

And yet his amendment 549A is more opaque in its language and doesn't specify that. And I do think given the discussions we had, particularly last week, about that power imbalance between someone who's less confident, less well educated, a power imbalance between a decision maker and that person accessing the service, then I do think it's an imperative that the independent advocate actually attends and is present to challenge some of the assumptions, some of the decisions that are being made.

I also just very briefly wanted to mention a point or consolidate a point raised by my my noble friend, which is about training. And the noble Lord will know because he and others have lauded the system in Victoria, in Australia, that actually the training provided around the specific issue of coercion is very limited at tier one training. And so I think he's missed an opportunity potentially to focus in on training because if you had an in-person, independent advocate and poor training, then that wouldn't be great.

But but you would you would have someone attending there, but you have a situation where you have inadequate training and someone not attending in person. It may be that they can send an email or do a report or a telephone call, but it's not the same as being there advocating for that particular individual. So I would perhaps invite the noble and learned Lord Eames, the sponsor, to address those specific issues of the opacity of his current amendment, his new amendment, and I accept it's been offered to the committee in good faith to address some of the concerns and issues raised previously.

But the specific issue about the wording of his new amendment 549A and the specific issue of training around coercion, which I think is a very important issue in this respect.

15:48

Lord Wolfson of Tredegar (Conservative)

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15:54

Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)

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16:08

Lord Falconer of Thoroton (Labour)

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have restricted who is entitled to an independent advocate, to the an independent advocate, to the specific group of people who have an understanding difficulty. I was also struck by the point that the noble Minister made, which is that very, very many people who are very, very many people who are terminally ill, for example, with cancer, would fall in the category of a disabled person. And it's not intended that everybody who qualifies needs an independent advocate. I've dealt with the amendments dealing with the purpose of the independent advocates.

I've dealt with the questions raised by Baroness O'Loan about what the purpose, what the what the role is going to be, including the Or in relation to consulting bodies before. I can't remember who made that point. Was it the Lord Jackson that you should consult before you make regulations under 549B? Section 55 gives the Minister power to consult with anybody who thinks appropriate. And I think that's probably OK in relation to that. The Baroness Coffey said that you propose an amendment that no independent advisor, independent advocate could deal with more than ten cases in a year.

Again, I don't I don't see that that's a necessarily a sensible or necessary provision. Many people who are qualified as independent advocates will be doing this full time. I don't see why the number should be restricted to ten. The noble Lord, Lord Goodman, said it's the regulations should be subject to the affirmative resolution, I agree. My amendment 862A does that the noble, the noble Lord Lord Gove moved the noble Lord Lord Frost, who were very happy to see. Here we had a bad news that he wasn't available before six.

So we're very good to see. Glad to see him now. And he was ably advocated for by the noble Lord Gove and the noble Baroness Baroness Lawlor. I'm against the proposal that he is making the proposal. Sorry. You perhaps shouldn't have bothered. The what? The proposal, as I understand it, is that where the registered medical practitioner says, no, I am not willing to conduct this. The preliminary discussion. Obviously the main reason. Because I'm against it. He should be.

We should set up a group of neutral advisors for this specific group to whom you have to be referred for the purpose of getting another clause. Five conversation. Noble Lords will recall that the clause five conversation has to be conducted in a way that gives rise to all of the options. And just to quote clause five, when you are giving the preliminary discussion, the explanation to the person, you've got to not conduct it in isolation, referring only to assisted dying.

You've got to refer to all of the options, you've got to refer to the prognosis, and you've got to refer to the treatment. What is being proposed, as I understand it, is a whole system of neutral advisors should be set up where somebody refuses to conduct that consultation so that you aren't sent to somebody who might be biased. Well, remember, this is taking you from somebody who refuses to give the preliminary discussion to somebody else. I understand the point, but it seems to me to be both unnecessary and inappropriate.

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I just ask you about. Ask the Lord about that. Let's just saying Lord about that. Let's just saying we have a doctor who are a medical practitioner who doesn't really, practitioner who doesn't really, for the reasons you've given, want for the reasons you've given, want to discuss this now? What is to allow that the person to whom or the organisation or whatever it is, the entity under the bill, the vague entity under the bill to which the person will then be referred, isn't part of a.

If you like a Mafia of M employees who. Because it doesn't necessarily have to be a doctor to which the person is referred, which is very much protected, are in the vanguard of being protagonists of assisted dying. This is the concern that

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that seeks to deal with in a state service. Well, as I understand it.

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Well, as I understand it. The saying is a doctor who will not conduct the conversation because, for example, he or she is because, for example, he or she is against it on consciousness grounds might refer somebody to what she describes as a pro assisted dying describes as a pro assisted dying mafia. Well, that seems to me to be unlikely first of all. Secondly, unlikely first of all. 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 got to have a clause five conversation which requires the doctor legally to put every option before you. What is being proposed is that we should have a neutral, a whole network of neutral advisers in order to ensure that. Before you get to the second clause. Five doctor, you haven't talked to somebody who might be pro it, which are not prevented from talking to anyway by the law. So no, I'm not in favour of it.

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Surely I thank all noble Lords. The debate this afternoon and also The debate this afternoon and also thank the noble and learned Lord for explaining his amendments. I think the answer to the problem that we're trying to solve is somewhere in the middle of this group amendments. I'm still have a level of concern about whether an individual knows what they're individual knows what they're saying yes or no to with the independent advocate and their understanding of the information

16:14

Baroness Grey-Thompson (Crossbench)

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that they're given. And I'd be very concerned if it turned into some sort of tick box compliance in sort of tick box compliance in terms of someone's understanding. I thank the noble Lady, the Baroness, for her confirmation that actually, under the Equality Act, someone under the Equality Act, someone with cancer, leukaemia, would count as being disabled. And it was not my original intention for everybody my original intention for everybody who wanted to enter this process, to have somebody independent alongside them.

And the noble and learned Lord Wolfson, I think, highlighted very clearly the crossover between this group and the earlier group that we're debating today on communication and language barriers, but actually listening to the debate, and this is why I think the answer is, is somewhere in the middle. If somebody chooses to enter this process, what if it was more tightly defined? What if they did want somebody independent that they could discuss this with? In previous debates, it said noble and learned Lord Tope and the Member for Baroness Penn and other places said the only coercion would be from a family member not wanting their loved one to enter the process.

So actually, I'm feeling more convinced that somebody of independent nature may be required because if the individual doesn't feel they have anyone to talk to, then they might end up being slightly lost in the system. The noble Lord, Lord Jackson, raised about coercion training, and I think this is an important part of it. In Australia, the coercion training is a video less than three minutes, and in Victoria, their navigator, it was created by the health board. It wasn't actually that clearly defined.

And I think there is something that we can learn from the situation in Australia. It's the Victorian model is now being replicated through Australia, and they're actually the role of the navigator. And much like we debated in earlier groups, was to source the doctors who'd be able to perform the process. And I certainly don't see that as something very positive. But I do think somebody who can be calm can give sensible, independent advice and just help people, because these are really big decisions that somebody is taking.

I think the noble Lady Baroness Hayter for her question on my amendment five three, three, as I said, I tabled all my amendments before the start of Committee stage and we did debate this area in another group. I chose to keep five, five, three, three in this group because I felt it's better because with my amendments, five, four, seven relating to people with down syndrome and then 300 relating to disabled people with support needs, I very much saw five, three, three as sitting alongside that, and I agree, I could have worded it better in terms of being more explicit, but that's why I didn't move it to a different group.

I think my noble

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friend Baroness Cass. Yeah. And she's not meaning for

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And she's not meaning for everybody, but only for people in, in a restricted category in the. In the context of this amendment,

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In the context of this amendment, I meant it in a restricted category. But also I didn't want to do was start with drawing amendments and start with drawing amendments and tabling them because I think at Committee stage it's useful to explore it. I'm not sure for anyone explore it. I'm not sure for anyone reading the Marshalled List on the outside for any who do, I'm not sure it's terribly helpful seeing just amendments withdrawn, but I think at Committee stage it's been a really useful discussion to have.

I thank my noble friend Baroness Cass raising the issue of remembering information, and I thank my noble friend Baroness Finlay of Llandaff for bringing in a sporting analogy, because when I was thinking about work I do outside this bill in. Over the years, I've done a lot of work on concussion protocols and the early years. The concussion protocols in sport were brought in to, to help people to make sure they weren't carrying on, playing rugby or other sports while on cuts.

But actually, there's 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? And those questions were learnt. So in that moment, people might not be able to actually answer the question, but they've learnt the answers. So I think in terms of what my noble friend Baroness Cass raised, this is something else that we we need to think clearly about. And another area I work in, in anti-doping in sports, we now have a new system.

It used to be the governing body of sport would both be the. Take tests from the athletes and then if there was an adverse finding or must be the policing for that and an independent system. UK anti-doping was purposely developed so that the governing body could be. Then if there was an adverse finding at first or second stage could actually guide an athlete through really complex processes. Now this is just talking about anti-doping in sport and you know, the athletes are educated in it, you know, at least every year.

But even if something like anti-doping in sport is hard to understand between what's written in a document and what happens when you're in it, I think assisted suicide probably deserves a little bit more. So I'm not convinced. I have to say, by the amendments tabled by the noble and learned Lord, I still don't think it provides enough of a safeguard. I'd be very interested in terms of being able to tie up what the noble Lord has said in the chamber, and then actually come with some stronger amendments.

And this is in the context of, you know, generally statutory advocacy is of of quite poor quality. Less than 15% of people get advocates in other areas when they need them. And, you know, I think it's quite worrying if you look at sort of advocacy in general, there's no central data collection of advocacy under the Mental Capacity Act. In 2019, a freedom of information request, looking at this area, found that 51 out of 139 local authorities did not collect data on M.

I'm c A support. And if you look at the Care Act advocacy, there's still limited data on that. QC said that in a Care act, safeguarding where there is a duty to appoint an independent advocate in England in 2025, 83.38% of those lacking capacity actually had an advocate appointed to them. If you just pick some fairly random counties. Derbyshire. The figure was 14.38%, County Durham, 32.64% and Liverpool 53%. So where there's a duty to appoint one and those figures are so low, I do wonder whether the take up in this space would be very, very limited.

So I still don't think we have the right balance between access and the process and

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safeguarding. But this stage I beg leave to withdraw my amendments. That the amendment be withdrawn.

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That the amendment be withdrawn. The amendment is by leave withdrawn. Amendment 169 by Mr. Mayor. Not moved. Amendment 170. Before calling this amendment, I must draw attention to the fact that if it were agreed to, I would be unable were agreed to, I would be unable to call 1712173 by reason of pre-emption. Lord Falconer of Thoroton not moved. Amendment 171, which I can now call Baroness Nicholson not moved 171A Baroness Nicholson not moved 172 Baroness Grey-Thompson not moved N173 Baroness Nicholson not moved 174 Baroness Berridge not moved 174A Baroness Nicholson not moved.

Amendment 175 in clause five. Lord Moylan. My Lords, I rise to speak to amendments 175 and 384 in my name, and I'm grateful to the noble

16:22

Amdt. 175 Lord Moylan (Conservative)

16:37

Lord Carlile of Berriew (Crossbench)

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I tend to view that that's mostly pot luck. But from the view of pot luck. But from the view of facts and the fact I start with is an assumption, which is that everybody who is being given a prognosis by his or her doctor prognosis by his or her doctor desires to make an informed decision. And if they wish to make such an informed decision, it such an informed decision, it should be based on some factual and scientific basis.

All that these amendments do, and I don't particularly speak to the very words of the amendments, but to the meaning of them. All these amendments do is require that a doctor who is giving a prognosis, or any other clinician giving a prognosis should do so on a solid medical and scientific basis, a prognosis that is founded in medicine, not in stories. And the last three patients they happen to have seen who had a serious illness. And it is a fact that only about 20%, I should say that I've spent a lot of time in the 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. And I'll give an example. In one major study, only about 20% of predictions of six months deaths 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 parents their patients, indeed, judging the moment of death becomes very difficult the further you are away from the actual death.

But it's very difficult to to know how far you far away you are from the actual death. When my father, who was the most reasonable person I've ever known. By the way, when my father was dying the night before he died, he. The last thing he said to me was that I was to wear his black suit for the funeral because he thought mine was scruffy. And of course, he and I had been the same size at a certain point in our lives.

And of course I did. And I knew at that moment, because I knew how ill he was, the family were there, the doctor was there, we were going through his last moments, a very happy death, a great family deathbed scene. We knew he would be dead by the following day and he died the following morning. But when somebody walks into the consulting room like the noble Lord Lord Moylan and is told his seriously ill, it's just an opinion at that stage on the part of the doctor who may have very varied experience and may actually have no scientific basis for what he or she is saying, even what is now called jest.

I believe the geriatric end of life screening tool, which uses algorithms and has tens of thousands of examples in it, still offers only varying levels of probability. And I've also looked at actuarial tables because a surprising number of very elderly and very ill people try and ensure their lives for a relatively short period. For a lot of companies that ensure senior directors for one year, it's called, I think, key person insurance, and it's all based on mathematics, but it's not actually science.

And I don't think it's asking much of the noble and learned, Lord, that there should be a provision in this bill that will mean that in every single case, when the patient asks for an informed decision, he or she is given the basis of upon which that information is founded.

16:42

Baroness Hayter of Kentish Town (Labour)

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My Lords, I'm very pleased that the noble Lord who moved the amendment has in remission from his amendment has in remission from his cancer on other bills. Where would wish he was in remission from his political views. But on this one, I think we we we celebrate with him. I used to run a cancer charity. And the truth is, of course, that at this on this particular issue, not everyone is using statistics. Doctors are often using their eyes because when we're talking about the last weeks, it is their eyes.

Rather than going to any statistical table that's going to tell them. And the assumption that all of this is going to be based, because statistically on the six months isn't like that. My own guess is that most people who are dying will only start actually thinking about this probably three months. And tonight I'm going to be dining with a recent widower and his wife, a very well known author who she was. But anyway, she she had cancer.

She fought it. Fighting it isn't enough. And it was really only in the last weeks that she was then realised what she wanted was help in those last weeks. And it was at that point she tried to get to Switzerland, but by then it was too late. Now my judgement is that much of this and many of the patients who will be asking for this, it will be very much towards the end. And I'm very surprised if at that point, the doctor will be going to their statistical tables, because at that stage, the person's age, the person's underlying health and other things will contribute as much to whether it's going to be days, weeks, or maybe a month as the actual particular type of cancer they've got.

So I think that this attempt to make it over scientific is probably not right. And I think we should have some faith, which some people in this House don't seem to have in doctors.

16:44

Baroness Fox of Buckley (Non-affiliated)

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It's it's very hard. >> It's it's very hard. >> To follow on from the noble Lord Moylan and Lord Carlile and Moylan and Lord Carlile and contributions given with such panache and wit and insight. What really intimidated me was when the noble Lord Moylan said, this amendment is all about understanding the mathematics. And I thought, Oh God, I put my name to it, this really terrible error, and I bring absolutely no mathematical understanding whatsoever to the question.

But the reason why I put my name to it, and the requirement the medical practitioners should discuss underlying data on survival in terms of the median prognosis of six months and how it's calculated and so on, was because I'm very interested in ensuring in relation to this bill that there is maximum transparency for patients to ensure that any choice they make is well informed. And the bill rightly requires that an applicant for assisted dying is informed. And it seems obvious, therefore, that being informed should include an understanding of the context of the data and reliability of prognosis.

That would help you in terms of informing yourself. If we accept the bill's criteria of terminal illness with six months to live, and despite what the noble Lady Baroness Hayter said, I mean, I, I don't think you can see it with your eyes. That will do. There's no I mean, at the moment I've got a terrible cough and cold. And if you look with my eyes I look like death warmed up. Right? I mean, I don't think that's good enough. I'm hoping it's a bad way of judging one's longevity as it goes.

Right. I but there is some basis on which a prognosis is made. They can see the tumours. They know you've got an illness. They're making a point. Right. But anyway, the point is that prognosis based on median life expectancy despite that is highly uncertain. And it's only right that applicants should be informed about the limitations and underlying data behind such estimates and their uncertainty. As anyone here who has faced a terminal diagnosis will know, and it does seem that many have and live to tell the tale.

Or many of my noble Lords will know from friends and family when you're told the condition is incurable, the first thing you ask that a patient asks is how long is actually hard to get an answer out of a doctor? Precisely, usually. And the patient wants to know how long because they want to know the worst. They want to know in order to arrange their affairs, the financial or personal. They want to work out how to spend their end of life time and so on.

The doctors can be eventually cajoled into giving a timescale, often reluctantly. When they do, it's usually to help patient to organise their affairs, sometimes giving them a timescale in order that they can benefit and access to benefits or get care support or anything. And I'm concerned that this bill will encourage a sense of six month certainty and will encourage more definitive time limit answers with less caveat caveats, because it becomes something where, oh, if I say six months, they get access to a service.

If I am a bit vaguer and say, I don't know. But while the bill's use of six months prognosis assessed reasonably by doctors implies there's a simple calculation that can supply estimated life expectancy. As we previously discussed, prognosis is not an exact science, and my concern, which follows on from the discussion we had last week about the power balance 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 doctor says, when a patient hears a doctor say six months, they may assume that that's an absolute scientific certainty.

The fact that there's a vast range of possible trajectories is something that I think the patient won't work out unless they're explicitly told it, which is why I like these amendments. This is just about ensuring that patients have a chance to understand how widely varying their future might be, that clinical predictions of life expectation expectancy show wide variability, depending on the condition that they have, or the method that's being used to calculate it. And for example, just a couple of examples.

I think it's important that female patients are told that women with terminal cancer tend to survive longer than men, yet prognosis are rarely disaggregated by sex. But, you know, tell women that I cheer you up. Maybe don't tell the men. Patients need to know that prognosis is is also likely to be especially wrong with poorly researched conditions like cancer in younger adults or MND. I mean, it's shocking to me to discover that in Canada, most people with MND now die by made by assisted death.

I mean, that's such a shock. But anyway, yet the natural progression of the disease is very hard to predict. And so and yet people actually are given assisted death as a terminal illness for MND. And yet how would you know when in fact, we're only finding out. And people can live years longer than the doctors originally thought. One key point is that modern treatments and medical breakthroughs can also make forecasting with accuracy more hazardous. There's a lot of cystic fibrosis in my family, and those doomed, those close relatives doomed as having this life limiting condition have survived wonderfully, have survived far longer than anyone thought they were going to because they were told that they wouldn't survive.

But they've survived because new drugs and treatments have had miracle impacts on life expectancy. Isn't that something to celebrate? But nobody thought that was true. I mean, we just thought they wouldn't make it. Or look at the miraculous efficacy of immunotherapy in terms of taking on stage four cancer, as described by the noble Lord, as, as, as evidenced by the noble Lord. Lord Moylan then there's some patients who will undergo treatment given actually as part of palliative care. It's intended it's administered to somebody with a terminal illness with the intention of improving quality of life, no expectation of cure, probably in the basis, oh, well, you've got about six months to live.

The patient is still terminally ill, but some patients will all know people like this respond much better than expected, and have both the length and quality of their lives extended beyond expectation. And that's a precious bonus. And I just think that patients should be told those possibilities when they go in, because otherwise they might despair. At the very least, patients need to know that the sort of this sort of granular detail, that there are possibilities rather than a stone cold.

You've got six months. You immediately think of all the worst things that can happen and, and, and maybe therefore make a decision that is quite literally fatal. This is not, by the way, about selling false hope. Some may die naturally before the six month red line. It is may not. And they need to know that. Or the consequences could, as I say, be unnecessary and bring about premature death based on despair or false information. Oncologists to finish oncologist Professor Chris Parker from the Royal Marsden points out that, quote, 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, they could or would have lived for years and enjoyed a good quality of life. Because I've seen patients like that. We just shouldn't allow this bill six month prognosis to become effectively an early death sentence, because patients don't know the odds aren't definitive and because they're actually sold misinformation by saying, you've got six months to live when it's a bit more complicated than that.

16:53

Baroness Watkins of Tavistock (Crossbench)

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My Lord, my. >> I just want to say that we've already had extensive discussion about the multidisciplinary team about the multidisciplinary team involvement. And in 50 years of nursing, not all in clinical. I agree. I have never heard a doctor come out with you definitely got six months to live ever. And I think there are much more subtle conversations and I do accept that people with made sometimes want to discuss. If I come off the support that you're giving me, how long would I live? And some of those answers can be very straightforward.

And we still enable patients when they want to, to stop treatment. But I am also delighted that the noble Lord is alive and that he clearly understands the statistical

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formula. Just one clarification. If I

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Just one clarification. If I could ask her. I, I agree that most doctors are not brutal and say, you've got six months and that's it. you've got six months and that's it. I was asking whether this bill, with its. In order to access this service, you have to have the six service, you have to have the six month prognosis. Sorry, you have to have the six month prognosis. Will have the six month prognosis. Will that then not encourage doctors to feel they have to be more definitive in order to allow people to access this service?

16:54

Baroness Noakes (Conservative)

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Sorry that I didn't sit down >> Sorry that I didn't sit down quick enough. The answer is that I don't think so. I have greater faith in the medical profession and the multidisciplinary team. Oh, Lord Bowness Lord Fox. First you referred to MD and the problem with some who appear to live quite a lot longer. The real problem with GND is that they almost certainly will not qualify for being classified as terminally ill under this bill, because it's the real problem with it's the speed of progression of the disease, which usually means they're getting a six month diagnosis is almost impossible to do so.

Motor neurone disease patients will find it very difficult to fit themselves within this, and that is, I think, widely acknowledged. The second point I wanted to make was that all of this discussion has been based on the the the prognosis given by a doctor to his patient. This bill requires it to be established that the. The individual is terminally ill. In order for assisted dying to be available. That decision has to be made by the First doctor. The second doctor, the panel.

These are not doctors who are 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 judgement. And of course, if they can't agree on that professional judgement, then the decision will not be that an assisted death can be given. So it seems to me, in the context in which the the prognosis is given, i.e. in order 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 of those who are involved in the process agree it. To the point that

16:56

Baroness Cass (Crossbench)

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Baroness Noakes makes, I think the person who is or people who are going to make the best judgement about prognosis is going to be the treating team, the treating doctor Multi-professional team. And I, Multi-professional team. And I, I've always been somewhat dubious about how much those exceed those about how much those exceed those successive doctors can add to prognosis, because they will not be specialists in the area. I just specialists in the area. I just make that point. However, I'm always gratified but slightly alarmed at the faith that people in this House might.

Noble Lords in this House placing doctors and I. It wasn't 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. But I think 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 is a there's going to be a series of trials and data on what the prognosis is for that age group with that diagnosis.

And then it narrows down because there's the specific features for that individual, and then you start treatment. And as the treatment goes along, your prognosis gets more individualised as you do or don't respond to the treatments that you're being given. And ultimately, it becomes clear to the treating team that you are no longer responding to treatments. And so it becomes a very individualised prognosis at that point. And so although you may start off on statistics which are very broad, you end up on giving the best advice about what you do see.

As Baroness Hayter said before your eyes, in terms of how that patient is responding to treatment and how they're doing, and the further complication that stops you depending entirely on, you know, the papers that you've just read is if that person started off with diabetes or heart failure or a series of other complications, there just is not the specific data for that complex of conditions that the patient has. So it is going to be significantly dictated by clinical judgement, ideally by the by the whole Multi-professional team.

And then we need to distinguish people with a clear cancer diagnosis where there's lots of data to people who have a mix of, of the more usual things that we see in the elderly population of cardiac problems, respiratory problems, diabetes, a whole Parkinson's, a whole complex of things. And then it becomes, again, something that you can't refer to in a textbook, but something that you see in the state of progression of that person's symptoms and their reducing response to treatments. And I should at this point should sit down because I should not be proceeding further when my noble friend can speak to this with much greater authority.

16:59

Baroness Finlay of Llandaff (Crossbench)

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I'm most grateful to my noble friend Baroness Cass. But what I might call that introduction, I might call that introduction, I think that this debate actually is I think this debate is extremely serious. And I think sometimes there has almost been humour which has been black humour during it, but people have had devastating experiences and that is what has often brought them to this position. And I'm grateful to the noble Lady Baroness Royall for actually intervening as she did earlier on, because there are people who are desperate to live and they suddenly deteriorate, and there are others who are quite resigned to their dying, and actually they carry on living for quite a time.

And it's very variable. But if I may, I also thank the noble Lady Baroness Noakes, for flagging up the very specific issue of motor neurone disease, because the disease trajectory is the important factor that will give you an indication. And the problem is that whilst cancer is probably in some ways easier than most other conditions, motor neurone disease is incredibly variable. Just as Ms. with dips and troughs and times that are much better, and intercurrent infections, which in each one might be fatal.

If I could just remind the House that when we discussed this previously, I stressed and I'd wanted amendments in over the progression of disease, the disease trajectory. Those amendments were rejected. But I do still return to the thought that they might solve the problem slightly better. And also, I would remind the House of the very wise words of the noble Lord Lord Wolfson when he summed up on the previous set of amendments, I won't go over that again.

But he really, I think, got to the point about the impossibility just in terms of when patients want to know their prognosis, it's not often in medicine that you say never, but I have learned to never give a prognosis in terms of a number. And often I'm saying to people, it would be easier for you, and it would be easier for me if I could predict and then help them in terms of quite simply, planning for the worst, hoping for the best is covering what they want to do in whatever time they have left and how they want to do it.

And it has been surprising how some people live remarkably long, and some people live sadly, remarkably short. But even when you think someone is going to die in the next 48 hours and you ask to suggest the family to stay in overnight, you can still be wrong. And many is the time when I've had a family stay over. The family are exhausted and the patient, fortunately, is sitting up in bed having breakfast, which is a relief. But people are tired now.

The sixth, the history of the sixth month, I think, came about because of the benefit system when it. Oh, the noble and learned Lord is shaking his head. OK, well, all. If I might just say a brief word about that. There were the benefits, enhanced benefits people were eligible for. I don't believe I've been speaking for ten minutes, have I? No, no. OK. Thank you. The I can't get my thoughts back that it used to be that you were eligible for fast track benefits at six months.

What happened is because people were hearing that as some kind of prognosis, doctors and nurses were very hesitant to recommend going for the benefits then, which is why there was all the discussion with the Department of Work and Pensions to move to the special rules at one year, where it is much easier to talk to a patient and say, look, we need to plan for the worst. I think you would be eligible. We can apply. And if you live for three years, you won't be caught even for an assessment for three years.

So let's go for it now. And that can help out people in really difficult financial circumstances. But to get back to the point of this amendment, whilst the mathematics behind it are admirable and there is serious misunderstanding between what mean and median is, and many people don't understand that the difference, I hope, I actually hope that these amendments will will not be considered at all. And I would plead that we look at the course of disease in terms of determining whether somebody is likely, and then the probability of them dying within a six month period, and that that probability assessment needs to be clearly written down and clearly defined so that people aren't misled in either direction.

17:05

Lord Rooker (Labour)

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As usual, I came to listen and >> As usual, I came to listen and not speak. There are a couple of things that have been said, and I thought, well, I want to react. I thought, well, I want to react. I agree entirely with my noble friend Baroness Hayter, to be honest. And I'm not going to go into the details, but I lost my first wife before the internet, so there were no internet searches at all because it's so long ago and we could work it out.

It kept coming back in half the time. It was three years, 18 months, still at work. No problem there. Managing college in south London, and he was coming back in half time. So he was fairly obvious that you could measure. We didn't we didn't do it like that. It was only later we worked it out that he come back half the time when I went through it, I had no warning at all. But I basically Lord Moylan. It's what the consultants who looked after me since the beginning when I had no warning in about four years after I finished chemo, and she's gone off somewhere else to do research.

So I wasn't going to say it again. And she said to me, what you have to remember is the drugs only deal with half the problem. That's what you said. The drugs only deal with half the problem. And that made me very satisfied. On the other hand, I've gone through cases where I've had people who were as positive as I am more positive than I am, but he got him in the end. But that's what I remember. The drugs only deal with half the problem.

17:07

Lord Stevens of Birmingham (Crossbench)

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On the thrust of the argument, I agree with Lord Moylan that agree with Lord Moylan that approaching this probabilistically, rather than with a single number clearly makes sense. And it's wonderful to hear the impact that these new immunotherapies have had in his own personal case as well for oesophageal cancer. But I do, just for the record, want to associate myself with the comments that Baroness Royall made, because I think the evidence is pretty clear that there is not an association between positive thinking and survival.

Cancer survival. There may be a link for quality of life, but frankly it is perfectly normal. Having had a cancer diagnosis for people to feel depressed or anxious. And the only reason for raising this very briefly at this point in the debate is I think we need to be very sensitive to the suggestion that somehow, sometimes 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's not what the noble Lord is suggesting, but just for the record, I think Baroness Royall was right to draw that our attention and we should be clear about that.

17:08

And I just say I was really. Lord Stevens has said, that 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 it's used, which suggests precisely what used, which suggests precisely what you're saying, that they've somehow failed in a mortal combat. failed in a mortal combat.

17:08

Baroness Jay of Paddington (Labour)

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I want to challenge the point that was made that this bill

17:08

Lord Young of Norwood Green (Labour)

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suggests that six months is inevitable. It doesn't do that at inevitable. It doesn't do that at all. In fact, if you look at paragraph seven in the bill, all it says is if you go to the doctor, says is if you go to the doctor, there's a recording of a preliminary discussion. That's all it says. It doesn't say, it doesn't it says. It doesn't say, it doesn't say any anything else. And then whatever. If you go to paragraph I, whatever. If you go to paragraph I, I where it goes to initial request for assistance and first declaration.

But where is there this idea somehow that this bill inevitably leads to a six month progression? There isn't anything in it other than the fact that the doctor is required by law to produce a written record of the preliminary discussion. Now, what he or she raises in that preliminary discussion will. Well, it could be a whole range of things, as we've heard from Baroness Cass

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and a number of other people. Before. The noble Lord sits down. I think we're all agreed that the I think we're all agreed that the reference to six months is to be reference to six months is to be found in clause two. An inevitably progressive illness or disease which cannot be reversed by 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. I Lord Sewell.

17:10

Lord Hamilton of Epsom (Conservative)

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I've always considered that the six months was actually critical in six months was actually critical in the essence of this bill, because there has to be some point at which doctors say you're likely to die, and misdiagnosis has been a problem. And I recognise remarks to the noble Lady, Lady Murphy, we have discussed Mr. Diagnosis before, but when we did, and it was summed up by the noble and learned Lord Maude Faulkner, he said, oh, well, perhaps some of these diagnoses.

Six months may be a little bit wrong, like eight months. What he failed to address was my noble friend Lord Polak, who was given six months to live, and that was 32 years ago. And we're still counting. And you know, 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. And it seems to me that if we've got these tremendous variations, they totally undermine the whole essence of this bill, because what we're doing is we're saying, well, if people have only got six months to live, they should apply for assisted dying.

But it may be that they live for years. Afterwards. I give way to the noble Lady.

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Should apply. I think he meant to say they could apply. Yes. All right. As I said, they

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Yes. All right. As I said, they could apply then. As if that helps. The noble Lady. Lady. And I think we've got to think very closely about this, because I think this is the essence of this bill. I don't really understand how we can be comfortable with the whole idea comfortable with the whole idea that these some of these diagnoses will be completely wrong. And as a result, there would be people who would be applying for assisted dying, who might have lived for years.

And this strikes me as being very disturbing element of the whole bill, really. And I think we should be seriously considering whether this should be something should be done to to actually address this problem. I'm glad it's not my difficulty.

17:12

Baroness Lawlor (Conservative)

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On on the statistics. The noble Lord, my noble friend Lord Moylan Lord, my noble friend Lord Moylan and Lord Carlile have told us about the uncertainty of statistical evidence and indeed the unreliability and pointing to a flaw at the heart of this bill that the person's death in a reason or a condition for eligibility is the death. It must be expected, reasonably expected, within six months. And in consequence of that illness. Now, what then is at the heart of the bill, if I may just develop the point a bit, is a process for managing assisted suicide in consequence of something which isn't at all certain.

And I have to say that in the areas we do know about where the state has the process for providing a service, particularly in education, we see that a state service is not geared to the individual case. And at the heart of one of the points, Lord Moylan explained, was the individual case. And most noble noble Lords agree with this. So how are we going to have a state service, as is proposed by the Noble Sponsors Bill applied to, which is for a general cohort, not the specific individual case, which is reliable for individuals.

And we see in, say, education or other areas that exceptions continue to have to be made for children, for instance, with special educational needs for particularly for autistic children, all kinds of problems. They're not really problems. They're exceptional cases which do not fit the general application of not fit the general application of a state service.

17:14

The Earl of Effingham (Conservative)

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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 Lord Moylan is living proof that an average or median or mean life expectancy is incredibly difficult to predict, as is the third standard deviation of the bell curve, which the noble Lord quite rightly referenced. The noble Baroness, Lady Finley, I believe, said she never gives prognoses due the.

Due to the complexity of the answer, other noble Lords have touched upon the way a prognosis is calculated in previous debates, and taking such a monumental decision of life or death based on a medical prognosis derived from median life expectancy, does raise questions. That said, it is difficult to see what other measure should be used as the test for eligibility. Before. Before I speak to my noble friend's amendments specifically, please allow me to add that not all illnesses and conditions will have the same range of life expectancy.

So when we are discussing the median, we should also consider the range of the distribution. If one prognosis is based on a range of 5 to 7 months and another is 1 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. And in that sense, not all median life expectancies are equal. And that is where my noble friend's amendment comes in.

It may be the case 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 means. The noble Lord Lord Carlile used a laser focus when he highlighted that just 20% of predictions of a six month death were in range. Both the noble Lord Lord Carlile and the noble Baroness, Lady Fox, used the phrase informed decision.

The noble Baroness Lady Finley reference clearly written down and clearly defined. And surely that is an important benchmark. So can I please ask the noble Baroness, the Minister, Lady Meryl will an explanation of the differences between the two prognoses I have described be given to the patient? How will that be required of by doctors? Will it be set down in guidance? For example, how will we know that something of such materiality, yet potentially ambiguity will be communicated correctly? I hope the noble Baroness Limb Minister might take that away, if it has not already been considered by officials as part of their assessment for the noble and learned Lord.

Lord Faulkner, may we please ask, has the noble and learned Lord considered using any other prognosis based eligibility test when the bill was being drafted? As this is clearly an issue that would implications.

17:18

Lord Kennedy of Southwark (Labour)

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My Lords might be of benefit to the House that I've noted. The time now is 1718 with no intention of moving on to another group. So when this when this group is finished, I will then be seeking to adjourn the house. So I need to wait for another debate that won't be happening this week.

17:18

Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)

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My Lords, the government does not have a major workability concerns with amendments one, seven, five and 384 tabled by the noble Lord Moylan, who we are very pleased to see in his place, and long may he continue to be a word about clinical practice, which may be helpful to address some of the points that were raised, including the ones just raised by the noble Lord Earl of Effingham. Although most of those questions are really were ones about the bill and therefore matters for the sponsor.

But let me just make a couple of points about clinical practice. It is rare for a clinician to base prognosis on median life expectancy. And in addition, explaining the data used is not common clinical practice. I hope that is helpful to noble Lords and the issues raised are rightly ones for noble Lords to consider and and decide. And of course, that does mean that the way that the amendments are currently drafted may require further consideration in order to be fully workable, effective or enforceable.

17:20

Lord Falconer of Thoroton (Labour)

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My Lords, could I also share everybody's genuine pleasure that the noble Lord Lord Moylan is here? the noble Lord Lord Moylan is here? Could I not congratulate him on telling us about it? I would have done, but he told me he didn't want it, so I respect his wishes in relation to it. Could I thank the noble Lord Lord Rooker for being willing to share his experience with the death of his first wife? Could I also associate myself with the Baroness Royall from personal experience that one should not feel that one has got some obligation, or that one is in some way defective.

If one dies quickly of cancer, or because one because one one 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? I think we probably don't know. Could I could I say in relation to this, first of all, we've had a debate about the six months, and I am incredibly unclean to revisit the six months, because I don't think that was the frame within which the Lord Moylan put his amendment down.

His amendment is about what is to be told to the patient, rather than whether six months is the right. And I'm gratified that the that the noble Lord Lord Moylan is nodding, so can I. Can I focus on what is the issue? How should the patient be told his amendment is within clause five. Clause five 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 him, to the patient, and the likely effect of the treatment.

And it requires them to go through all appropriate palliative hospice or other care, including it's not just palliative hospice, it's other care as well, including symptom management and psychological support, and offered to refer them to registered medical practitioner who specialises in such care for the purpose of such further discussion. So it's a detailed discussion about the prognosis, the diagnosis, the likely effect of treatment. I was very struck by the speech made by the noble Baroness Batters Watkins. The idea that he just told you got six months to live.

And that's it is extraordinarily unusual. The idea that it is very, very unlikely that it could happen in this context seems to me to be extraordinarily unreliable and noble. Lords will be aware that there has to be a record kept in clause seven of this particular conversation. So the iniquity that one is trying to deal with seems to me to be unlikely to arise. Should we be putting in to the bill, the specific statistical material that has to be given? So you say if you're if you're relying on a median or an average, you've got to say that you're doing that and what the variations are.

No, I'm not in favour of that. There's power in the Secretary of State to by codes of practice or guidance, to give indications as to how it should be dealt with. I do trust doctors more than many people in the course of this debate. I think it would be unhelpful to put in words like this amendment into the bill. So I'm against the amendments made. Could I just on a completely separate issue, we have debated the question of the prognosis and why the six months I could could I strongly adopt the words of Baroness Noakes? This is not the view of one person.

This is the view of two doctors and a panel of three. And therefore, this is not just a question of one prognosis and it's over. But that is an issue we dealt with previously. So delighted that the noble Lord Lord Marland was in a position to move the amendment. I'm sorry to say I don't agree with it.

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Does he recognise that if the earlier part of the Bill and this clause had compatible wording over clause had compatible wording over the progress and disease trajectory of that individual patient, that would make it easier for patients would make it easier for patients to make a decision. It would make it much easier for doctors having it much easier for doctors having those conversations, whether it is the first, the conversation, whether it is the assessment or whether it is the independent doctor.

And it would also allow changes in medical science and which happened very rapidly to mean that people weren't stuck with wording in this bill, but it would allow the changes in information giving. So I'm just asking him whether he would consider revisiting that word prognosis as written and clarifying it better on

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the face of the bill. I think I'm not sure. I didn't

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I think I'm not sure. I didn't quite understand the question, but I think what the noble Baroness is saying, she's going back to her saying, she's going back to her amendments that we discussed previously, which is you've got to have regard to the progress of the have regard to the progress of the disease. I think she's saying, well, you've got to have the preliminary discussion. Then you've got the first assessment, then the second first assessment, then the second assessment. Therefore, you've got time to look at the I haven't understood it.

She's shaking. I'm I'm sorry I haven't answered. Could you perhaps you could raise it with me separately when I understand it.

17:26

Lord Moylan (Conservative)

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Delighted to raise it outside the chamber. It was a little bit more complicated than those three points. >> Could I start before he vanishes

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Could I start before he vanishes by thanking the noble Lord, Lord Carlile of Berriew and. And Carlile of Berriew and. And apologising to him for not, in my opening remarks, acknowledging the fact that he had added his name to my amendment. 175 my Lords, I would be disappointed if the noble and learned Lord were at this advanced stage in our committee to agree to an amendment proposed to the Bill, and he has not disappointed us. He has.

He has rejected it. The. The. The fact is that clause five 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, that data, the spread of that data, the range. As I think my noble friend, the Earl of Effingham refer to it as, should be a part of that discussion so that people understand that if they're told they have so many months to live, that that is not a prediction.

It is, in technical terms, a median based on underlying data, and that data should be disclosed apart from the Noble and learned. Lord, this is an unusual debate as far as I'm concerned, because it's the only one in in which I think I agree with everything that everybody 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, and I never use it myself.

Although there was a quotation I used in my speech where I quoted Professor Gould as using it, but it wouldn't be the natural language that I would want to language that I would want to propose. And I also agree. With Lady Royal that, of course, simply talking about positive attitude and indeed attributing moral value to that is, is is one aspect only of the management of the diagnosis. One one might find oneself facing. I'm not a Christian Scientist, and I certainly believe that medical treatment and the most advanced medical treatment one can get hold of is absolutely crucial, and almost certainly much more important.

I also agree with Lady Hayter to some extent, the noble Baroness, Lady Hayter, that it is possible, of course, for some clinicians at a specific time to be able to tell by looking at people simply that they're not going to live very much longer. But the evidence we have, and there are studies about this, that that is true where there is a very short time left to live and that 14 days or less, and people with 14 days or less to live are unlikely, in my view, to have access to the to the provisions of this bill, simply because there is quite an elaborate, elaborate bureaucracy attached to it through which one has to pass and that takes time.

But for those for the key thing for this bill is the six months. The six months is written into the face of the bill. So it's that that we have to look at. And six months prognoses are not particularly accurate. And where they are medians, it is important to understand the basic data. The noble Baroness, Lady Finlay of Llandaff, said that it would be a great deal better if we didn't have this, these these amendments at all. And I agree that.

But again, my point is, in the context of this bill, where six months is written into the face of it and is an absolutely crucial key to turning the door and to allowing you through the door on the path to an assisted death, then I think that is what makes things rather different. I'd also say that if all doctors were the same as a behave the same as the noble Baroness, Lady Finlay, and never gave a prognosis of any sort, then the bill, of course, would be a nullity, because nobody would ever get to that base one to start it.

So I'm not sure how whether that thought has entered the noble and learned Lord's head, and whether he's already thinking of amendments which might circumvent it. But I'll leave things there. And with the

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agreement of the House, I beg leave to withdraw my amendment. Is it your Lordships. Pleasure that this amendment be

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Pleasure that this amendment be withdrawn? Amendment is by leave withdrawn. Amendment 176 Baroness withdrawn. Amendment 176 Baroness Grey-Thompson not moved. Ben 177. Baroness Finlay of Llandaff not Baroness Finlay of Llandaff not moved 178. Lord Carter of Haslemere not moved 178A Baroness Lawlor not not moved 178A Baroness Lawlor not moved 179. Baroness Hodgson Grey-Thompson not moved. 180 Lord Taylor of Holbeach not moved and 181 Baroness Grey-Thompson not moved and 182 Marion Thompson Grey-Thompson not moved.

Therefore. 185 Baroness Grey-Thompson not moved. 186 Lord Hunt of Kings Heath not moved 187 Baroness Finlay of Llandaff not moved 188 Baroness Berger not moved and 18A Baroness Coffey not moved.

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My Lords, I beg to move that the house be now resumed. Question is that the House be resumed, as many of that opinion resumed, as many of that opinion shall say, content contrary, not content. Believe the contents have

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it. My Lords, I beg to move the house. Do now adjourn.

09:30

Legislation: Terminally Ill Adults (End of Life) Bill - committee stage (day 12)

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