House of Lords
Arrangement of Business
Captain of the Honourable Corps of Gentlemen-at-Arms and Chief Whip (Lord Kennedy of Southwark) (Lab Co-op)
My Lords, before we begin, I will make my usual brief remarks. First, I reiterate the thanks, on behalf of the whole House, to all staff across the House for supporting this Sitting today. I know that noble Lords will be aware of the huge amount of work that takes place to enable us to sit today, at the end of another long week and a very late night on Wednesday.
I will not repeat everything I have said before at length, but I should, as usual, remind noble Lords of some key points. I will adjourn proceedings today at around 6 pm. Any noble Lord can, of course, seek to bring the debate to an end earlier by moving a Motion that the House be now resumed. I hope we can conclude the group we are on when we finish at around 6 pm but, if necessary, I will adjourn the House in the middle of a group. The clerks will compile a list of all noble Lords in attendance at the beginning of that, and noble Lords will be able to check at the Table that their names have been recorded properly. Only those present at the start of the group can participate when the adjourned debate begins on the next Committee day. It is, though, easier if we all work together to ensure that we complete the group we are on when we get close to the rising time, rather than having to break mid-group.
My noble and learned friend Lord Falconer of Thoroton has set the target for today. As I have said before, I hope that, with discipline and the usual courtesies, we can progress towards the target. The Whips will facilitate a short 40-minute lunch break at a convenient point around 1 pm to assist everyone. For general guidance on how noble Lords should conduct themselves, I highly recommend the Companion, particularly paragraph 4.29 on page 60 and paragraphs 8.81 and 8.82 on page 143.
I am very conscious that next week is the final week before the Easter Recess and noble Lords are due a well-earned break. I have therefore decided that next Friday I will seek to adjourn the House at around 3 pm rather than 6 pm. I hope that helps noble Lords with travel planning.
Terminally Ill Adults (End of Life) Bill
(1 day, 7 hours ago)
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Baroness Coffey
Baroness Coffey (Con)
My Lords, in this group I have tabled 28 amendments and signed another one. Most of them are connected to the fact that I do not believe the Bill should apply to Wales. We had something of a debate on the first day in Committee, but I was conscious at that point that we did not want to spend the entire first day debating Wales and that we would come back to the legal importance of aspects of this Bill in regard to that. I will of course not speak to every single amendment because a lot of them are just on that theme, but it is an important theme.
I am conscious that, since we debated, the Welsh Senedd has voted for the legislative consent Motion. I remind the Committee that at no point was the Welsh Senedd invited to vote on the principle of legislating for assisted dying, because a change in criminal law would not be within its purview. However, in this group, with amendments tabled by other Peers, there is an opportunity for us to consider—
Lord Falconer of Thoroton (Lab)
It was asked to vote on the principle of whether this should be dealt with by the Welsh Senedd, because one of the amendments to the Motion for legislative consent was that it believes that
“Wales should have full powers to choose to legislate or not regarding the legality and implementation of assisted dying services, as is the case in Scotland”.
That was beaten by 25 to 13.
Baroness Coffey (Con)
The Welsh Senedd’s legislative consent Motion was not about whether it could accept or reject the Bill. People perceived a threat, although I appreciate that this is not what Kim Leadbeater or the noble and learned Lord will have suggested. This perceived threat, explicitly put in a letter by the sponsors of the Bill, was that if the Welsh Senedd rejected the legislative consent Motion, various clauses—particularly Clause 42—would be removed from the Bill, which would effectively remove any involvement of the Welsh Senedd in how the Bill would be put into effect in Wales.
Even then, the Welsh Health Minister voted against that, as did the First Minister of Wales, and they continued to say they felt the Bill was unsafe. I do not want to get into a rehearsal or a repeat of what happened in the Welsh Senedd—but it did vote. Interestingly, the Government have to deal with another issue where the Welsh Senedd voted down a legislative consent Motion on the Crime and Policing Bill, but that is not a debate for today.
Here we are into an important part of the Bill, where the UK Government can override any decisions made by the Welsh Government and the Welsh Senedd. That is particularly singled out in aspects of Clause 42. I have co-signed Amendment 764 tabled by the noble Baroness, Lady Finlay of Llandaff, which seeks to address that by removing certain powers in that regard so that the UK Government cannot determine what happens in Wales. Since the introduction of the Bill a very long time ago, this has evolved into basically a health matter. It is certainly how the Bill’s promoters have tried to shift this. That is why I feel so strongly about it, as I set out on our first day in Committee.
I will turn briefly to some of the amendments we are debating today. Amendment 736 would amend Clause 40, which suggests that guidance “may relate to matters” for Welsh Ministers. Coming from a UK Minister, that is not right. The Welsh Government, working with the Welsh Senedd, should determine that.
The noble Baroness, Lady Smith, has tabled Amendment 844 to effectively shift this to become a decision entirely for the Welsh Senedd. There is certainly merit in considering that, and I am sure she will set that out later. Even further, I strongly support her Amendments 903 and 905, which have been signed by others.
Baroness Coffey (Con)
Let me just finish my sentence, then of course I will come back to the noble and learned Lord. So far, the UK Government have refused to share any correspondence or to say which of these clauses should be devolved or which should come under a legislative consent Motion. That is why it has been rather unsatisfactory.
Lord Falconer of Thoroton (Lab)
The noble Baroness is saying it is a breach of the Sewel convention. The Sewel convention is that if you legislate in a different legislature from that which would be normal—the Senedd, in this case—you need the consent of the Senedd. The Senedd gave its consent in the legislative consent Motion, so perhaps the noble Baroness could explain why it is a breach of the Sewel convention.
Baroness Coffey (Con)
It is a breach because I believe a threat was made to Welsh Senedd Members that if they did not vote for the legislative consent Motion, the entire removal of Clause 42 would be put forward in an amendment by the sponsor of the Bill. That is in a letter that was sent by the sponsors of the Bill to the First Minister, then shared with the Senedd Members. I appreciate that the noble and learned Lord may not think it was a threat, but I am suggesting to him that it was perceived as a threat, which then affected the decision of several Senedd Members.
Lord Falconer of Thoroton (Lab)
I am totally confused by this speech. The complaint being made by the noble Baroness is that this should be dealt with by Wales. We took the view that if the legislative consent Motion did not go through—that is, the Senedd did not consent to it being dealt with here—it would be dealt with by Wales. The noble Baroness is now complaining that we are complying with the rules of devolution and legislating here, as the Senedd has agreed.
Baroness Coffey (Con)
I am conscious that we have probably exchanged views enough. There is a clear breach of the Sewel convention. It is not usual for the UK Parliament to vote on such matters. I do not want to get into further exchanges, but I have spoken to Senedd Members and they believe—I do not want to use an inflammatory word—there was a perceived threat of this being imposed without their say. That is also why, as I repeat, the Health Secretary for Wales and the First Minister of Wales both voted against the legislative consent Motion. That, to me, is extraordinary in itself. I will not go into all the details on that, but it needs to be considered carefully as we continue to debate this group.
As I say, we covered a lot of these issues on day one, so it is not my intention to extend debate. It is useful to switch to other noble Lords who have tabled, in particular, amendments regarding the Government of Wales Act. I am grateful to those Peers who have signed some of my amendments in terms of the shift of power to the Welsh Senedd on this. I beg to move.
Baroness Smith of Llanfaes (PC)
My Lords, I shall speak to my Amendments 844, 903 and 905 in this group, but I first turn the Committee’s attention to the LCM debate, as the noble Baroness, Lady Coffey, just did, that took place in the Senedd on 24 February. At the beginning of the debate, Jeremy Miles, the Cabinet Secretary for Health and Social Care, set out to the Senedd:
“I … wish to be clear about what may happen if the Senedd were to withhold consent today. The sponsors of the Bill have confirmed that, in those circumstances, they would seek to remove clause 42 from the Bill. That would mean the law in England and Wales would change to permit assisted dying, but there would be no powers in the Bill for Welsh Ministers to implement assisted dying services in Wales or to oversee or regulate such services”.
That clarification is important for the Committee. Throughout the debate, many MSs stated dissatisfaction with how the Senedd was being treated. I apologise, but I will quote several MSs today because I think it is important that they are heard here. One said:
“We are being asked to vote in the dark”,
and another
“we’re … being asked to sign a blank cheque”.
Another said
“we are … legislating with a blindfold over our eyes … This is no way to treat a Parliament. This is no way to treat a nation”.
The Senedd was put in an impossible situation by this Parliament. A vote against this LCM would result in assisted dying services being available only privately, and a vote in favour at least retains some power for the Senedd to shape such services through the NHS in Wales. That was what the vote was about specifically. I thought this was concisely put—
Baroness Royall of Blaisdon (Lab)
The reason that the Senedd was voting in the dark was that this Bill had not reached its conclusion in the House of Lords. If it had done so, the Senedd would have been legislating in the daylight.
Baroness Smith of Llanfaes (PC)
I thank the noble Baroness for her intervention. However, that is not the case in terms of the practical reason why the Senedd Members raised those points; it is also in relation to the fact that they passed an amendment to this LCM, which I was lately going to touch on, which states that the Senedd “regrets” that this Parliament has not properly considered the
“constitutional implications of this Bill for Wales”.
It is important to note that, yes, they passed the LCM, but they amended it with a point about this Parliament not having done its duty and gone through the implications for Wales in detail. A lot of those in Wales who support the Bill just do not feel that they have had an opportunity to shape this Bill. I thank the noble Baroness for her intervention, and I hope that that clarifies my point a little further.
The point was concisely put by Adam Price during that debate:
“Supporters of assisted dying do not argue for access determined by wealth. Opponents do not argue for a system outside NHS governance in a matter as grave as this … No country’s Parliament should have to stand aside while another decides the terms on which its own citizens live and die”.
He went on to say that he sincerely hoped that the vote was the last time that the Senedd—and other devolved Parliaments—was put in that situation.
The Senedd passed the LCM with an amendment stating, as I just mentioned, that the Senedd:
“Regrets the lack of thorough consideration of the constitutional implications of this Bill for Wales during the legislative process”.
As I just said, the passing of that amendment also showcases that we have failed in our own duty here in relation to those implications.
Amendments 903 and 905 in my name aim to restore an amendment that was agreed in Committee in the other place. The amendment was later taken out on Report without resolving the purpose behind it having been put forward and agreed in Committee. Simply, my amendments would give the Senedd a vote on the final Bill passed here before regulations could be created by Welsh Ministers for the delivery of an assisted dying service in Wales. The reason for this amendment is simple: as I highlighted at Second Reading, although the criminal law is a reserved matter, the legality of assisted dying in this case, and the delivery of such a service, is a devolved matter. Not allowing the Senedd to have a vote nor the opportunity to fully scrutinise and amend this Bill infringes on devolution and disrespects the roles and duties of Members of the Senedd.
Health and social care makes up over half of all spending from the Welsh Government’s budget. Do noble Lords not agree that it is therefore essential that Members of the Senedd are able to scrutinise all health spending? Not allowing Members of the Senedd to shape this Bill limits their ability to do that. The Covid pandemic is the most recent prominent example of how Wales does 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. 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 turn to Amendment 844, which would create a new clause to address this exact issue. The amendment would deliver parity between Scotland and Wales on this matter by amending the Government of Wales Act to remove offences related to suicide from reserved matters. This would allow the Senedd, if it chose to do so, to introduce its own Bill on assisted dying. It would allow the Senedd’s health committee to take its own evidence, including from NHS Wales and the Welsh Government’s Health Secretary. Your Lordships will be aware of the list of witnesses who were called to recent Select Committees ahead of this Bill. The chief executive of NHS England was called to give evidence, but there were no representations from Wales. I respect the work that members on that committee carried out; however, would they 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? Amendment 844 would be the best course of action in order to recognise that this Bill has not been designed with Wales or for Wales and to align Wales with Scotland in making a decision on this matter.
I turn finally to the amendments in this group from the noble Baroness, Lady Coffey. In the hypothetical scenario that we passed her amendments alone, we would be leaving Wales in a grey area. Wales would be taken out of this Bill, but with no way for the Senedd to legislate on this matter. In this Committee, we must consider the full consequences and where those decisions will then lie. My Amendment 844 would avoid that scenario and ensure that the Senedd had a way of legislating on this matter if it chose to do so.
To conclude, and as I already highlighted at Second Reading, I support people’s right to choose how they die. However, in the case of services being made available in Wales, they 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.
Baroness Fox of Buckley (Non-Afl)
My Lords, I thank the noble Baroness, Lady Smith of Llanfaes; that was a tour de force. Goodness knows, we rarely agree, and I am hardly a Plaid supporter, but I am from Wales. I want to reflect on couple of tiny things that she said in why I wanted to speak.
Family and friends in Wales were completely confused about what the vote meant when it happened. They asked, “Have we just voted for assisted dying?” It was not clear, the way it came across. They were not sure what was being voted on. In a way, they were not alone, because when I talk to people, I also feel very uncomfortable that the Senedd was basically asked to vote on a blank cheque, as was said, because Members of the Senedd did not, do not and could not yet know what the Bill will look like. You can blame us here for that—we have not got very far—but the truth is that it seems presumptive for the Senedd to be asked to give consent in advance when we do not yet know whether amendments will get through this place and how they will change the Bill. By the way, that includes amendments by the noble and learned Lord, Lord Falconer, the Bill’s sponsor.
Baroness Finlay of Llandaff (CB)
My Lords, I am most grateful to the noble Baroness, Lady Smith of Llanfaes, for her excellent tour de force on the constitutional issues facing the Senedd in the face of Westminster, particularly as we move into elections. I will make a few background comments, much more from my own professional angle in Wales.
We must not forget that there is a long history of health and social inequality in areas of Wales, with rurality creating many problems. My colleagues in palliative medicine across palliative care in Wales have described end-of-life care in Wales as being at breaking point, because the demands of the terminally ill Bill risk drawing away funding from a sector that sorely needs it. We have seen bed closures in Wales, which have been quite tragic. There simply do not seem to be the resources to deliver assisted suicide in Wales.
The Welsh Cabinet Secretary for Health and Social Care, Jeremy Miles MS, has admitted that ensuring the availability of Welsh-speaking staff would be challenging, but people find it much more difficult to communicate in a language that is not their first language, and it is much harder to ensure understanding, detect coercion and detect difficulties unless you can communicate in your own language. I know we are coming on to interpreters later, but I remind the Committee that Welsh and English have equal standing in Wales.
It is unfortunate that the amendment in the other place was removed because, actually, the Government’s impact assessment indicates that two in three older people in Wales struggle to make suitable appointments or to communicate with their GP, for many reasons. That is not because of a problem with the GPs; it is a problem of rurality, access, recruitment and resources.
There is also a major concern that the Senedd’s Health and Social Care Committee detected. It warned that the lack of a dedicated voluntary assisted dying commissioner for Wales would risk the postholder, as the Bill stands,
“being less familiar with the operation and impact of the Act in Wales”,
with a further risk of inequity as a result. This goes to the tension between health and justice in terms of the route.
My Amendment 764, which I am delighted that the noble Baroness, Lady Coffey, has co-signed, respects the devolved competence of Wales and would remove a sweeping Henry VIII power that the Delegated Powers and Regulatory Reform Committee, on which I serve, has objected to as “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 Committee’s 32nd report expressed particular concern that
“the powers can provide for anything that an Act of Parliament can without the scrutiny that an Act of Parliament would receive”.
It went on to discuss some of the things that such a power could be used for that might evade proper parliamentary scrutiny. The follow-up 49th report again expressed
“‘particular concern’ that ‘the powers can provide for anything that an Act of Parliament can without the scrutiny’”
because
“allowing a power to provide for anything that an Act of Parliament can do makes it unknowably broad, even where there are express limitations on its exercise”.
It described this as
“a fundamentally flawed approach to delegated powers”.
The report continued:
“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 is exceptionally rare”—
as your Lordships know. Such wording as we have seen in this clause appears only in two Acts of Parliament: the European Union (Withdrawal) Act 2018 and the European Union (Future Relationship) Act 2020—basically, the Brexit changes.
On the day of the Senedd vote, the noble and learned Lord, Lord Falconer, wrote a letter, as already referred to, which was copied to Members of the Senedd and implied that, without legislative consent from the Senedd, a person in Wales eligible under the Act could legally access an assisted death only through a private provider or by travelling to England. He went on to state that he would seek to remove Clause 42 from the Bill—the whole of the clause.
Additionally, I suggest removing Clause 42(3), which my amendment would do, because the Bill does not 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 in relation to Wales. This could override the Sewel convention and impose aspects of such provision on Wales, hence my very short but crucial amendment.
Lord Pannick (CB)
My Lords, it is a great pleasure to see the noble and learned Baroness, Lady Prentis of Banbury, back in her place. She has been very much missed, and I hope this is the first stage on the road to full recovery. She, like me, may have a feeling of Groundhog Day because we have made lamentably slow progress on the Bill since she was last with us. We are on day 12 in Committee and we are still on Clause 5 of 59.
As the noble Baroness, Lady Coffey, mentioned, she began our Committee proceedings on 14 November when she moved the first of her 111 amendments in relation to Wales, and here we are again. I say simply to the Committee that of course the Bill should apply to Wales. The Bill seeks to create an exception to the prohibition on assisted suicide and that is an aspect of the criminal law of England and Wales. We all agree that criminal justice is a matter reserved to Westminster. It would be bizarre were this House or Parliament to approve the Bill but not approve it in relation to Wales. There is simply no sensible reason why people living in Wales should be denied the same options as people living across the border in England.
I listened carefully to what the noble Baroness, Lady Smith, said, and she suggested that there has been some parliamentary mischief, and that the people of Wales have not been listened to. But it is the case that the people of Wales have a number of representatives in the House of Commons. My understanding is that they all voted for the Bill.
Lord Stevens of Birmingham (CB)
Most of the amendments in this group relate to Wales, but some of them also relate to Scotland. Notwithstanding the noble Lord’s sensation of Groundhog Day, there has been an important development since we met last Friday, which is that the Scottish Parliament, by a decisive majority of 69 to 57, has chosen against assisted dying. In that context, therefore, a number of the provisions in the Bill need a significant rethink; in particular, references to Scotland in Clause 57(2) and (3), which would extend the provisions to Scotland, surely should no longer apply.
Baroness Whitaker (Lab)
I thank the noble Lord for giving way. There is a substantial difference between the Bill that was not accepted in Scotland and the Bill that we are debating now. The Bill that was debated in Scotland had fewer safeguards; it is not the same Bill and therefore the noble Lord’s premise is not quite as he said.
Lord Stevens of Birmingham (CB)
The noble Baroness brings me neatly on to the second point I was going to make, which is that the lack of safeguards in Scotland precisely demonstrates the constitutional and practical difficulty of trying to legislate in Scotland while a number of those key safeguards are reserved matters to Westminster. Part of the reason the Royal College of Psychiatrists and the pharmacists came out decisively this week against the Scottish Bill was because it was not able to include enforceable conscience protections for health professionals that would, for example, have enabled them to refuse an instruction from their employer to participate in assisted dying. Instead, the mechanism that was forced, as it were, on the Scottish legislation was a Section 104 order, which would be subject to a future Westminster Government changing their mind.
The Scottish Parliament was being asked to legislate for assisted dying, absent any Scottish safeguards for conscience and dependent on the future decisions of a Westminster Parliament. The noble Baroness neatly illustrates the point that there is a fundamental problem when one part of the United Kingdom seeks to go its own way. It is incapable of getting the necessary protections and that is one of the reasons why the measure was defeated. Amendment 887 in this group, which would withdraw the reference to Scotland from some of the measures, clearly makes sense given that the Scottish Parliament has just decided that it will not go down this path.
Lord Falconer of Thoroton (Lab)
The three reasons why it extends to Scotland are so that people cannot advertise in Scotland to England and Wales, so that people in England and Wales get proper protections if they want to use the conscience clause, and so that substances are dealt with by the United Kingdom. That is why Scotland is included. Is the noble Lord saying that he wants those removed if the Bill goes through?
Lord Stevens of Birmingham (CB)
Can the noble and learned Lord elaborate on his second reason?
Lord Falconer of Thoroton (Lab)
The second reason is that if, for example, you want the protection of employment law, that employment law which extends to the whole of the United Kingdom should protect you in Scotland as much as in England. You should never be prejudiced. That is why it is included.
Lord Stevens of Birmingham (CB)
Is the noble and learned Lord suggesting that Scottish health professionals will be travelling south to undertake assisted dying? Is it a sort of Berwick-upon-Tweed provision?
Lord Falconer of Thoroton (Lab)
If you are an English person who has been prejudiced because you say, “I don’t want to be involved”, you should not be prejudiced anywhere in the United Kingdom.
Lord Stevens of Birmingham (CB)
It is not so much a matter of prejudice because, as I understand it, this provision was inserted in the House of Commons in the anticipation that the Scottish Parliament was going to have before it a Bill on assisted suicide, which it would at that point have passed. This was trying to do a belt and braces on a Section 104 order which everybody could see was likely to be deficient.
Lord Falconer of Thoroton (Lab)
No, that is not right. The reference to Scotland was included to provide protection for people in England and Wales who, under employment law, wanted to exercise the conscience clause. If I am right about that, I am sure the noble Lord would not wish it removed.
Lord Stevens of Birmingham (CB)
I would be interested to come back to that on Report when we have had a chance to investigate that point further.
Fundamentally, this shows that there is a great problem, a structural problem, in trying to do these types of big social changes through Private Members’ Bills, be they in Scotland or England. The reason for that is that it requires concurrent action by the Governments of both nations. We have seen time and again that when these sorts of questions have arisen and we have posed these questions, we have been told by the Front Bench, for reasons we all understand, that amendments to try to deal with these problems pose workability concerns. Then we ask, “How would you address those workability concerns?” and answer comes there none, because the Government are officially neutral on the question. Dealing with these sorts of questions cannot be left to Private Members’ Bills when you cannot get to the bottom of the workability concerns or deal with the fact that, in order for the narrowly drawn legislation to work, there are a whole set of other things that have to be in place that only the Government can provide.
I conclude on that point by noting that this past week we have seen a report from the House of Commons Public Accounts Committee, once again on hospice and palliative care. It says:
“There is an urgent need for reform to address the financial challenges that the independent adult hospice sector faces … The Department’s solution—the Modern Service Framework—is in the early stages of development, details are sketchy, and it is at least a year from being introduced. This is not good enough when so many hospices are announcing service cuts”.
The idea that we should legislate when that is the context right now seems to me utterly ridiculous.
Lord Deben (Con)
My Lords, as a Welsh-speaking Welshman, who has, in this House, consistently supported Plaid’s perfectly right demand that there should be fairer funding for Wales—I am not a Plaid supporter, but I support that aspect—I hope that the House will have listened carefully to the fundamental comments made by the noble Baroness, Lady Smith. If the Bill is passed, the Welsh Government will have to make arrangements for its implementation in Wales. In Wales, the provision of palliative care is not as good as it ought to be—this is widely understood. Yet we would be imposing on the Welsh Government the necessity to make particular decisions about health in Wales, when they have no powers to make those decisions for themselves.
That is a very simple issue, and I recognise the problems stated by the noble and learned Lord. But the truth is that we have an underfunded Welsh Government who spend half their money on health and know that there are real gaps in the provision. Last week, the noble Baroness, Lady Murphy, told us that assisted suicide was part of palliative care. That, of course, has solved the case—we now know that it is just part of palliative care. But those of us who do not think that it is part of palliative care recognise that, in Wales, the issue is sharper than anywhere else because of the lack of funding, which is about the misuse of the way that funding from the centre is put out.
I beg this House to take very seriously what the noble Baroness, Lady Smith, has said. If we were to ignore the amendments we are talking about here, we would be saying to the Welsh, “You just stuff it because we are going to decide”. We have had that issue before on abortion in Northern Ireland: they decided what they thought and we chose a moment when we had the power to decide they could stuff it. I believe in devolution, and I do not believe that this House should tell the Welsh people to stuff it; we should let them make their own decisions.
Finally, I will turn to what the noble Lord said. I know perfectly well—
Lord Sassoon (Con)
Would my noble friend, who as ever makes passionate and eloquent interventions, first accept that point about the need for additional resources for palliative care across both England and Wales has been made repeatedly through these debates? I think the Committee does not need to hear more about the need for additional resources for palliative care in Wales or anywhere else. That is entirely clear.
The other point that I wonder if my noble friend would accept is that the need for a Bill on assisted dying—the desire for one—is as popular in Wales as it is in the rest of the United Kingdom. To make arguments, therefore, about imposing something on the Welsh people or on the Welsh Senedd, as other noble Lords have made, seems to be wholly inappropriate. The Welsh people have clearly expressed a view that they would like to see legislative provision for assisted dying.
Lord Deben (Con)
First, it is said on both sides that they want more money for palliative care, but we now know that palliative care includes assisted dying. I therefore do not accept that the demand for more money for palliative care from those in favour of this Bill is the same thing as those of us who are asking for more money for palliative care so there is a proper choice.
Secondly, the issue is not whether the people of Wales should make the decision on the issue of assisted suicide; the issue is whether decisions made on that subject—which have to be made, because the noble Lord is perfectly right that the legal issue is not devolved—should be made in circumstances in which the application and implementation of those decisions are excluded from the powers that the Welsh Government have. All we are saying here is that those are two different things. I accept entirely what the noble Lord said about the need to make a national decision because of criminal law. However, I am saying that the sponsors of this Bill have got to face that it will ask the Welsh to give up the important control they have in circumstances in which they are already impoverished by the way in which they are supported and where they have particular difficulties with what we call palliative care—not that which the noble Baroness, Lady Murphy, calls palliative care.
Lord Deben (Con)
I knew I would do that. I am sorry. I will not refer to the noble Baroness, Lady Murphy.
Baroness Murphy (CB)
My Lords, could I make it clear to noble Lords that, in the best legislatures that have implemented similar legislation to this one—and I am thinking of Oregon, the State of Washington and so on—assisted dying is a small part, a very tiny part, of a good palliative care service, and it is best delivered when people who have been caring for somebody through the course of their terminal illness are enabled to make that final choice in their own time when they are ready. That is the point I was making then, and which holds today. I did not say that it was part of palliative care here. It certainly is not at the moment; I would like it to be, but it is not.
The only other point I would like to make is that we have been referring throughout this debate to the Scottish vote. Is it not lovely that the Scots could make a vote? We will not have the opportunity to make a vote in this House due to people going on and on about Wales and matters we have already discussed many times and have already had explained to us. It seems to me that we are just wasting time and we will never get to a vote. I realise that is what some in the House would like, but it is sadly the case that we will never get to the point where we can make a decision in this House about whether we support this legislation or not.
Lord Deben (Con)
I am pleased that I gave time for the noble Baroness to talk, given that she thinks all of this is nitpicking. I remind the House that is what she said about the work we are doing. The fact is—
Lord Falconer of Thoroton (Lab)
I am in a total muddle about what the noble Lord, Lord Deben, is saying. I think he is trying to say that Wales should decide on implementation. The Bill says:
“The Welsh Ministers may by regulations make provision about voluntary assisted dying services in Wales”.
We are giving the Welsh Ministers that power. Could the noble Lord make it clear that he supports that provision?
Lord Deben (Con)
What I am saying is very simple: the proposers of this Bill have not properly taken into account the particularities that the Welsh have put forward so nobly and well by the noble Baroness, Lady Smith. I never hear from the proposers of this Bill any comprehension or understanding that some other people might have contributions to make. That is why we have had no meaningful changes to this Bill. It is a Bill which is opposed either in principle or in practice by everybody who is supposed to carry it through, and it has now caused real trouble in Wales. I am merely asking the proposers of the Bill to give this House some belief that they really are listening and are not treating our conversations as nitpicking.
Baroness Royall of Blaisdon (Lab)
My Lords, I would like to point out that my noble and learned friend Lord Falconer has in fact tabled amendments and they have not yet been debated because we have not reached them in the Marshalled List. With regard to the very interesting and important discussion about Wales, many of the facts which were quite properly given by the noble Baroness, Lady Smith, are related to the devolution settlement itself. That is, quite frankly, a much wider issue than that which we are debating today.
Lord Carlile of Berriew (CB)
My Lords, as a former member of another place who represented 2,900 square miles of Wales, I have the feeling that we are getting into a horrible conceptual muddle in this debate. I feel the phrase “horses and carts” applies to several sentences around what is being debated here. I was one of the advocates of devolution when I was a Welsh Member of the other place and supported it very strongly when it came about, and I absolutely recognise the points that have been made so ably by the noble Baroness, Lady Smith. However, after hearing earlier parts of this debate, what I am hearing is that actually the money side of this is not the horse; it is part of the cart.
We have heard Ministers, including my noble kinswoman by the way, repeatedly saying in response to amendments in this debate that this House and this Parliament decide whether we pass this Bill. If the Bill is passed, the Government will have to provide the resources to enable it to work. I apprehend that, if this Bill is passed, if it is given enough time to reach the end of its parliamentary stages, which I think it should be allowed—though I do not support the Bill in principle, by the way—then the money would have to come from somewhere and the adjustment would be made to enable Wales to provide the services required.
Lord Weir of Ballyholme (DUP)
My Lords, it is good to see the noble Baroness, Lady Prentis, back in her place, and I am sure the whole Committee welcomes her back.
Unlike the noble Lord, Lord Carlile, I cannot claim to have a background in representing Wales—the closest I have been is on a few childhood holidays—but I have experience in one of the three main devolved Parliaments in the United Kingdom. We have a unique constitutional settlement in the United Kingdom, part of which is the slight irregularity and rough edges so that in Northern Ireland, Scotland and Wales devolution does not happen in exactly the same format.
I find myself in complete agreement with the noble Baroness, Lady Smith, who made an excellent speech. I do not know whether she should be more worried that I agree with her or I should be more worried that I find myself in full agreement. The reality is that her speech clearly indicates that the amendments in this group, which are worthy of support, go to the heart of important issues relating to the constitutional settlement that we have in the United Kingdom. They are worthy of support, regardless of whether you are the strongest supporter of this Bill and the principle behind it or you are the most fervent opponent.
It is important that the will of the Parliaments of Northern Ireland, Scotland and Wales is fully respected. On occasion, there is a danger that the Parliament in Westminster shows a bit of a tin ear to the desires of the Parliaments in the devolved nations. As has been alluded to, we have at times seen—I will not go into the details—things imposed on Northern Ireland against the wishes of the Northern Ireland Assembly. Similarly, we need to be sensitive to the wishes of the Welsh Senedd. On the consent Motion, the Senedd was left in a virtually impossible situation. It is concerning that that has been misrepresented by some as the Welsh Senedd embracing a Bill on assisted dying. That has been the spin, but we know that the one vote that has taken place on the principle saw the Senedd say that it did not support legislation of this nature.
Clearly, there are health service implications of assisted dying. As such, we should respect the positions of the devolved Parliaments in Wales, Scotland and Northern Ireland. This week, Scotland has looked at its legislation, which I agree is not the same as the Bill before this Committee. We were told by supporters of the legislation in Scotland that it was “bulletproof”, but then we were told that it did not have the same level of safeguards. That slightly calls into question the oft-repeated phrase that this Bill is “the safest in the world”—those phrases seem very similar. It is important that we respect the wishes of the devolved institutions.
The noble Lord, Lord Pannick, is right on one particular point. On the very first day in Committee, a number of amendments touched on this area, particularly those tabled by the noble Baroness, Lady Coffey. One of the disappointments, which is symptomatic of the way that this Bill has been dealt with, is that concerns were raised on day one, yet they have not been properly addressed. It seems to me that, rather than Wales falling into line with what is brought forward in Westminster, we should be taking action that enables this place to retrofit whatever decisions are made in Wales for the Welsh people.
I conclude by slightly oddly agreeing with one point that was made in an intervention. One noble Lord said that, essentially, we have had enough talk about the lack of funding for palliative care. In one sense, he is right. It is important that we have less talk about funding palliative care and more action on funding palliative care.
Lord Harper (Con)
My Lords, I want to touch on a number of points. First, I join the noble Lord, Lord Pannick, in welcoming my noble and learned friend Lady Prentis back to these Benches. I do not think she will mind my saying that she has been following our debates assiduously from home—she cannot get enough of them. It is a delight to see her come back to hear them in person.
The noble Lord, Lord Pannick, put his finger on one of the issues by asking what reason there could be for us not legislating for Wales. Well, the rather obvious reason was set out clearly by the noble Baroness, Lady Smith of Llanfaes: the Welsh Senedd has debated the principle of assisted suicide and has decided that it does not want it to apply in Wales. I think we should respect that.
Baroness Smith of Llanfaes (PC)
I want to clarify that that is not what I said in relation to the debate on the principle. That was a separate debate, and I do not think that it is necessarily relevant to the discussion, given that the LCM has been voted on.
Lord Harper
I recognise the noble Baroness’s view, but the noble Lord, Lord Pannick, asked why we should not just go ahead and legislate for Wales. The point is that the Welsh Senedd has debated this matter, which is a perfectly good reason for us not to proceed without its consent. I will come on to some of the amendments tabled by the noble Baroness in a moment.
Lord Pannick (CB)
The Senedd has given its consent —that is what the noble Lord seems to be ignoring. Why should this Parliament not proceed to deal with what we all agree is a reserved matter?
Lord Harper (Con)
This is the heart of the problem, which was highlighted brilliantly by the noble Lord, Lord Stevens. This issue touches on a reserved matter—the noble Lord is absolutely right that the proposed change to the criminal law is reserved—but delivering the services, if done through the health service, would not be a reserved matter. The Welsh Senedd debated the principle of the issue and decided that it did not want to have assisted suicide in Wales. When it was faced with the issue the other week in relation to the LCM, what it was being told, as I understand it, was that, if it did not consent to this Bill, and if Clause 42 were removed, it would not have the power to legislate on the delivery of the services. However, this Parliament would still proceed to change the criminal law in Wales, thus allowing people to assist other people to take their own lives, but without the Welsh Government or the Senedd having the ability to legislate for those healthcare services. That, I think, is the position and what it found unsatisfactory.
Lord Falconer of Thoroton (Lab)
What the Senedd decided was that it would consent to Welsh Ministers being given power, in effect, to legislate on how to introduce it—that is Clause 42. The effect of the LCM is for the Senedd to say—to the extent that it should be a matter for the Senedd to decide on—that it is content that Westminster should deal with it. If the position is that the Senedd should in fact deal with it, then the Senedd could have retained that power. However, it decided, very sensibly, that if the Bill is going through, it should have powers concurrent with that and get them from the same Bill, because then there is no doubt about what the Welsh Ministers have to do.
Lord Harper (Con)
Yes, but the problem is that the noble and learned Lord has just confirmed, I think, that whatever the Welsh Senedd said, his intention was that this Parliament would have legislated to change the criminal law in Wales because it is reserved—and that does not give any democratic say to the Welsh Senedd. That is because of the way the devolution settlement has been established, and, as the noble Lord, Lord Stevens, said, that is unsatisfactory. That is why this issue would be better legislated for in a Bill dealt with by the Government that covered all aspects of it: both the change to the criminal law and the way the necessary services would be delivered in the whole of the United Kingdom, rather than just in England.
Lord Deben (Con)
We are not going to change the devolution settlement in this Bill—of course we are not. That is not the issue and that is not what is before us. Instead, this comes back to the Government. I entirely agree with the speech from the noble Lord, Lord Carlile, but we are supposed to rely on the Government saying that, after we pass this, they will deal with the money. That is the problem. I do not believe them. They have to tell us what the money will be and where it will come from. They have to tell the Welsh that the money going to Wales will be increased proportionately so that Wales can deal with it. Until they do that, we cannot make proper decisions. I totally agree otherwise with what the noble Lord, Lord Carlile, said.
Lord Harper (Con)
Hang on. The noble Lord has just intervened on me; I am still making my speech, and I need to deal with this. I agree with the point he made.
Let me come on to the amendments from the noble Baroness, Lady Smith of Llanfaes. She has set out an alternative way of doing this, which retains the powers entirely with the Senedd, and there is a lot to be said for that. I will not say more about that now, because I made those points when we debated Wales in the first place. Instead, I have two further questions to ask.
In my reading of Clause 42(3) and (4), the Secretary of State—at Westminster—
“may by regulations make provision about voluntary … dying services”,
including the Henry VIII power to amend primary legislation. Does that enable the Secretary of State—a Secretary of State at Westminster—to amend the legislation that set up the health service in Wales, the National Health Service (Wales) Act 2006, which sets out the foundational principles of the health service in Wales? If it does, it is exactly what the noble Lord, Lord Stevens, said the other week: it again means that this bit is a Trojan horse allowing the fundamental principles of the NHS to be changed in Wales, not by Welsh Ministers but by a Secretary of State at Westminster and, as my noble friend Lady Finlay said, without even having to consult Welsh Ministers. That is not acceptable in principle, and I would be grateful if the noble and learned Lord could confirm that. I will take one more brief intervention, because I have one more point to make before I sit down.
Lord Carlile of Berriew (CB)
Has the noble Lord noted that Clause 42(1) and (3) have identical wording? Both the Secretary of State and the Welsh Ministers
“may by regulations make provision about voluntary assisted dying services in Wales”.
Maybe there is a conundrum that needs to be resolved there.
Lord Harper (Con)
I have noticed that. It limits their powers to what is within the legislative consent of the relative bodies. I am not clear about that fundamental point.
My final point comes back to the issue about getting answers. On the first day of our debates, I raised a number of issues—which I will not repeat today—from my experience as a Member of Parliament for a constituency on the border. There are practical questions about how we deal with those cross-border issues and about who sets out the rules for people. Is it based on where they live, or on where their GP is based and who delivers their healthcare services? I asked some very specific questions and highlighted the real issues created by that, if we do not resolve them. We are now on day 12 in Committee, and I have not had any answers to any of those very specific and detailed questions that I asked on day one. It is for reasons like that—I say with respect to the noble Lord, Lord Pannick—that we are making such slow progress. We are asking questions but we are not getting answers.
Lord Pannick (CB)
I suggest to the noble Lord that, if we got to Report and if we did not take so long on these issues now, we would get answers, because that is the purpose of Report. I know very well why the noble Lord is reluctant for us to get to Report: because the result would be exactly what happened on Wednesday night, when we debated and decided on the decriminalisation of women who had late-term abortions. There would be lots of talk and passionate speeches, but, at the end of the day, the House would vote in favour of a compassionate approach to the issues.
Lord Harper (Con)
I will be very brief in my response to that because of the time. That has nothing to do with this issue; this is a completely separate issue. Deciding on assisted suicide is not the same as allowing abortion to term without any legal consequences, which is an extreme provision supported by only 1% of the British public—but I accept that Parliament made a different decision. Those two issues are not connected in any way, so that issue is not relevant to this debate. We raise these issues—real concerns about how this would operate in practice—but we are still waiting to hear specific answers from the sponsor of the Bill. If we had answers earlier, we might make faster progress.
Baroness Fox of Buckley (Non-Afl)
My Lords, I cannot let the noble Lord, Lord Pannick, get away with that. What happened on Wednesday night was a separate issue. As it happens, I argued for a change in the law in relation to decriminalising abortion—but now I am on this side. This sort of easy “swatting away”, “culture war”-style argument is unhelpful. People, in good faith, are concerned about the lack of safeguards in this Bill.
I do not agree with the idea that no one wants to get to Report. I would much prefer to be voting on aspects of the Bill, because a wide range of the concerns that have been raised could be addressed through amendments tabled by the sponsor of the Bill so that we can get on with it. That is what I would want.
The only reason we are discussing Wales, as far as I am concerned, is what has happened since we discussed it on the first day in relation to the Senedd’s decision. It is a perfectly appropriate thing to raise. The idea that we are wasting time talking about Wales—said by people who apparently respect devolution—seems a bit rich. We want to get to Report, and we should keep the insults out in order to do so.
Lord Goodman of Wycombe (Con)
My Lords, my Amendment 765, supported by the noble Lord, Lord Rooker, would delete Clause 42(4). I will briefly read the subsection, as it is not very long:
“Regulations under subsection (3) may make any provision that … could be made by an Act of Parliament, and … would not be within the legislative competence of the Senedd if it were contained in an Act of the Senedd”.
I will not repeat the case put by the noble Baroness, Lady Finlay, who quoted the report of the Delegated Powers Committee, on which I sit, which argued that the clause is highly inappropriate. Rather than do that, I will put to the sponsor of the Bill a simple question, and I would be grateful if he addressed it when he winds up. I quote from the report of the committee:
“Delegated powers that can be used to do anything that an Act of Parliament can do are very rare, with the wording currently appearing in just two Acts: the European Union (Withdrawal) Act 2018 and the European Union (Future Relationship) Act 2020”.
I was not on the committee when that report was produced, but my understanding is that the argument at the time was that the exigencies of Brexit required business to be done by regulation, rather than by an Act of Parliament. My question for the sponsor of the Bill is: what is the exigency in this case that requires the provision, which he believes needs to be made, to be made by regulation, which necessarily has to be dealt with on a “take it or leave it” basis, rather than by an Act of Parliament that Peers and Members of the other place can amend? I would be grateful if he could answer that question when he replies to the debate. If he cannot, I look forward to returning to this on Report, if we ever get there.
Baroness Blackstone (Lab)
My Lords, regrettably, we are never going to get to Report. Members of the House keep referring to Report. My noble and learned friend, the sponsor of the Bill, has frequently said that he will come back to some of the questions that have been put by the noble Lord, Lord Harper, and others. Normally, that would happen on Report. Were there a more disciplined and focused approach to scrutinising the Bill by those who oppose it, we would have perhaps got to Report, but we have not. We have had a long debate about Wales, including all sorts of questions about the devolutionary arrangements, and I wonder whether we can now hear from the Front Bench.
Lord Goodman of Wycombe (Con)
Would the noble Baroness perhaps like to make it clear whether she believes that it is inappropriate for the sponsor of the Bill to reply to the question I have just put in Committee?
Lord Thomas of Cwmgiedd (CB)
My Lords, I hope I will be permitted to say something about Wales. I was going to make a much longer speech but my friend, the noble Baroness, Lady Smith of Llanfaes, made an excellent argument on the merits of the issues relating to Wales.
The short point to which I wish to draw attention is the issue in this case. Is it an issue about criminal law? This often arises in questions within a federal form of government, which in reality we have here: how do you characterise this issue? Does anyone really think this is about the criminal law? The criminal law is part of finding the solution, but it is a debate about a moral issue and how to use the resources of the NHS. The criminal law should not be seen as an impediment.
I would have said a lot more about other things but, being accused of wasting time, I will not make that speech. I just draw attention to the problem that arose in 2016-17. Wales wanted to pursue its own policy in relation to what is old-fashionedly known as the chastisement of children. Of course, the chastisement of children is governed by the criminal law. As Wales wanted to do it at a time when there was a Conservative Government in London and a Labour Government in Wales, there was an intergovernmental discussion on how this issue should sensibly be dealt with. It was decided that an exception ought to be written into the Government of Wales Act and the very complicated schedules, permitting Wales to make its own decision. So it was excised from the reservations of powers to Westminster.
All Amendment 844 seeks to do is to make a minor alteration to look at the issue for the people of Wales. Should they be entitled to deal with this issue comprehensively? I say nothing about what happened in the Senedd—enough has been said about that. I remind noble Lords that there will be a new Senedd after 7 May, before the 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 to focus. What is the issue? Is it one that Wales ought to be able to make? If it is not, the simple solution is a technical one, which can easily be made through Amendment 844.
Lord Gove (Con)
My Lords, the inference from some comments during the course of this debate has been that somehow the issues raised in Wales and by the Senedd are peripheral to the centre of this legislation—not at all. The issues that have been raised by the debate are absolutely central to the legislation, as we have heard throughout the debate.
The Bill seeks to change primarily the criminal law, and it goes into some specificity about that. But as has been pointed out very effectively by the noble Lords, Lord Stevens of Birmingham and Lord Goodman of Wycombe, and others, the Bill carries with it certain consequential and potentially hugely consequential changes to the National Health Service—changes that will be made by regulation and are not in the Bill.
That is precisely the point that was at issue when the legislative consent Motion was debated in the Senedd. As my noble friend Lord Harper pointed out, when the Senedd voted on the broad principle of assisted dying—not this legislation but the broad principle—the Senedd was against it. When invited to vote on the legislative consent Motion, the Health Minister in Wales, Jeremy Miles MS, explained to the Members of the Senedd that a legislative consent Motion would be necessary because in the absence of a legislative consent Motion, as he understood it, it would be criminally possible to assist someone in dying, but he would not be able to provide the appropriate detail about whether the NHS would be responsible for that service. The spectre was raised in the minds of those legislating in the Senedd that, in effect, there would be assisted dying but it would be provided privately.
Jeremy Miles might have been confused in his interpretation, but he is the Health Minister in the Welsh Government and was previously the Minister responsible for constitutional relations between the Welsh Government and the United Kingdom Government. It is hardly the case that he is a naif stumbling into this argument without a background in the two most telling areas that the legislation covers.
It was also the case that the Senedd, in that same debate, voted by a clear margin to say that the whole issue had been constitutionally mishandled and that the way in which criminal legislation was being used as a Trojan horse, as has been pointed out, to potentially dramatically change the constitution and the provision of the NHS, was simply not good enough. The Senedd was very clear in voting in that way.
This 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 or a good Minister, but I 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. As has been pointed out, a variety of questions have been raised specifically about the nature of regulation to do with the NHS that Ministers at the Dispatch Box cannot answer, not because they are unwilling, truculent or obstinate but because, as they clearly say, they are neutral on the Bill.
The Welsh Senedd granted the legislative consent Motion because it feared that it would not 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. It felt that this was the only way of ensuring its continued relevance. It was not, as supporters of the Bill in Wales have made clear, an endorsement of the principle of assisted dying, let alone an endorsement of this legislation. It would be dismissive of the people of Wales and reckless in regard to the devolution settlement to interpret that vote as endorsement of this legislation.
Lord Winston (Lab)
I will just ask this question. I am genuinely a very simple doctor, and I do not really understand this problem. It is clearly a problem in ways that I think are humanitarian. At the moment in the House of Lords, we are discussing complex issues regarding precision medicine, which involves the use and manipulation of genetics, some of which will certainly require ethical considerations by this House. The issue is that clearly these advances in medicine cannot be denied to the people of all the United Kingdom because, although they might change healthcare in amazing ways, they will be far more expensive than assisted dying. How does that work? Perhaps the noble Lord could briefly explain to me why it seems wrong that we might be depriving the Welsh of something that is much wanted, simply because we cannot find the way through this on a legal basis.
Lord Gove (Con)
I had concluded my remarks but I am grateful to the noble Lord for raising this point. Precision medicine, and the advances that it potentially holds for all of us, is a wonderful potential breakthrough, but changes not just to the legislation but to the regulations governing it will be brought forward by the Government. Any concerns that the devolved legislatures have about the operation of them will be addressed by government means—by the Cabinet Office or any other Minister who is responsible for intergovernmental relations.
We had a situation in Wales where the Minister responsible was operating on the basis of assurances that he had been given by the sponsors of this Bill relating to Clause 42. It may well be that the sponsors can clarify what was meant; why it was that Jeremy Miles believed that if a legislative consent Motion had been denied, we would have legal assisted suicide—assisted dying—in Wales without the capacity of a Welsh Minister to determine the future of the NHS as they wished. Perhaps that can be cleared up.
We cannot have a recurrence of that situation, where we are having to clear it up here, having already had the legislative consent Motion, and the relevant Minister having told other Members of the Senedd that the only reason they should back that Motion was because of the fear he had of the effective privatisation of killing in Wales. That is why we must have government legislation, rather than proceeding with a Private Member’s Bill, which is clearly inadequate when we are dealing with the future of the NHS, for the people not just of Wales but the entire United Kingdom.
Lord Wolfson of Tredegar (Con)
My Lords, I first take a moment to say from the Front Bench how wonderful it is to see my noble and learned friend Lady Prentis of Banbury—who was here a moment ago.
Lord Wolfson of Tredegar (Con)
Causation is denied. My noble and learned friend can read it in Hansard, and I spoke to her outside. It is a testament to her dedication that she has been following this on TV. I do not know whether that shows how poor daytime TV normally is, though those of us who were here on Wednesday will remember that your Lordships’ House is very late night TV as well.
I spoke on the amendments when we first touched on this topic in Committee, right at the beginning. As my noble friend Lady Coffey said, those amendments interrelate with what has been discussed today. The Front Bench is focused on the question of making sure that we do not end up with a situation where different citizens and residents in the United Kingdom have substantially different rights in areas as important as this. I listened carefully to what the noble Baroness, Lady Smith of Llanfaes, said about what actually happened in the Senedd. The phrase “voting in the dark” was a stark one, which I think we ought to remember.
On the question of what the Bill actually does, I am reminded of when I studied private international law, where you have something called the characterisation question—something that lawyers often like. It basically goes like this: in order to get the answer you want, you rephrase the question to focus on the bit of the problem which you want to focus on. In this case, you ask the question, “What does this Bill do?” The noble Lords, Lord Pannick and Lord Carlile of Berriew, rightly say, as a matter of form, that the Bill amends the criminal law and therefore is a competence of Westminster. In reality, assisted dying will not be provided by the criminal justice system. In practice, it will be provided by the health service. That is why I listened carefully to what the noble Lord, Lord Stevens of Birmingham, and the noble and learned Lord, Lord Thomas of Cwmgiedd, said: in practice, this is a Bill which touches on health, which is a devolved competence.
That brings me to the wider and more important point. Earlier this week, the noble and learned Lord, Lord Falconer of Thoroton, raised Jersey, Guernsey and the Isle of Man—the Crown dependencies—in the debate on the Crime and Policing Bill. 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 therefore end up in a position where substantially different rights would exist for different residents and citizens in the United Kingdom.
That raises an important point of principle, on which I would be interested to hear the noble and learned Lord’s 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 the purposes of this group of amendments, Wales—might have different rights in law, or does he have a potential solution to create a situation where, as close as possible, people have the same or substantially the same rights?
I respectfully ask the Minister to respond on this point as well. Frequently, we have heard from the Front Bench the phrase, “We are neutral”—that the Government are interested only in workability and will look at these issues as and when they arise. However, this is a deep constitutional issue. The Government cannot be neutral on the point of whether they are content in principle that people in England might have different rights on assisted dying from people in Wales. The Government ought to have a stance on that fundamental constitutional position. The Government also 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, with palliative care being such an important part of the overall process, they would equalise 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.
For those reasons, I look forward to the responses of both the noble and learned Lord and the Minister.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am grateful for the views that have been expressed today. As usual, I will keep my remarks to those amendments that raise significant legal, technical or operational workability concerns. I very much associate myself from these Benches with the welcome to the noble and learned Baroness, Lady Prentis. We were delighted to see her return to your Lordships’ House and look forward to hearing from her.
I turn first to the amendments tabled by the noble Baroness, Lady Coffey. Taken together, they would restrict eligibility for assisted dying to England only and exclude people resident in Wales, registered with a Welsh GP or who have recently moved across the border. They would remove the powers of Welsh Ministers to issue regulations and guidance and limit the commissioner’s monitoring functions to England. Individually and as a group, the amendments could have complex effects, risk significant unintended consequences and lead to a lack of clarity about eligibility and the effect of the law across the England-Wales border.
Restricting the Bill to England, as we have heard, would also create a divergence in the criminal law of England and Wales. The protections in Clause 32 would not apply in Wales and the Suicide Act 1961 would continue to apply there as it does at present. It would therefore be an offence to take steps in Wales to assist access to an assisted death in England even where lawful under the Bill in England. That would represent a significant divergence in homicide- and suicide-related offences and run counter to the current devolution settlement.
Amendment 887 would remove Clause 57(2) and (3), preventing certain provisions from extending to Scotland and Northern Ireland, including those on approved substances, advertising, and employment protections. This would risk parallel and potentially conflicting regulatory regimes; may allow advertising of services in Scotland and Northern Ireland, contrary to restrictions in England and Wales; and could leave health professionals who, for example, live in Scotland but work in England and Wales without the same employment protections as someone in England.
There are a number of further amendments in this group concerning powers in the Bill relating to the provision of an assisted dying service in Wales; namely, Amendment 765, tabled by the noble Lord, Lord Goodman, Amendment 764, tabled by the noble Baroness, Lady Finlay, and Amendments 742, 743, 844, 903, 905 in the name of the noble Baroness, Lady Smith. I bring to the attention of noble Lords that these amendments may alter or impinge on the devolution settlement. Any such changes would usually be made following consultation across the UK Government and with the Welsh Government to explore the wider implications. Further, the Senedd would be expected to consider material changes that affect devolved competence.
Amendment 762, tabled by the noble Lord, Lord Goodman, would require the Secretary of State to specify which organisations will provide assisted dying services in Wales, within one month of the Act passing. This raises workability concerns as it requires clarity on who provides services before key implementation decisions have been made. This could be an interference with the ability of the Welsh Ministers in the devolution settlement to exercise their powers in a devolved area. As regulations under Clause 42 are made using the affirmative procedure, this amendment would also require parliamentary debates in both Houses within one month of the Bill being enacted.
Amendment 767A, tabled by the noble Baroness, Lady Coffey, appears to seek to limit the power of Welsh Ministers to make regulations related to private services only and would make Welsh Ministers unable to establish a publicly commissioned service. As currently drafted, the Bill leaves this as a decision for Welsh Ministers. This amendment would therefore have devolution impacts and, if passed, the Welsh Government would need to be reconsulted and the consent of the Senedd would need to be sought for this provision.
I make no comments on the other amendments in this group. As noble Lords are aware, those amendments have not had technical drafting support from officials. Therefore, any further revision and corresponding amendments may be provided to provide consistent and coherent terminology throughout the Bill.
Baroness Finlay of Llandaff (CB)
My Lords, may I question the Minister? The 49th report of the Delegated Powers and Regulatory Reform Committee drew attention to the very unusual nature of the clause in the Bill that allows the delegated powers to be used to do anything that an Act of Parliament can do and drew attention to the fact that this is extremely rare. Is the Minister saying that that is acceptable in this Private Member’s Bill and therefore potentially sets a major precedent in relation to other legislation? Can she clarify whether the Government, simply in relation to that, not to any other part, dispute the Delegated Powers and Regulatory Reform Committee’s conclusion?
Baroness Merron (Lab)
I am sure that all noble Lords welcome that report and its comments but, as the noble Baroness is aware, it is a matter for the sponsor to decide the response to that rather than the Government.
Baroness Smith of Llanfaes (PC)
What is His Majesty’s Government’s approach to the legislative consent Motion process and making sure that the Sewel convention is kept to? What intergovernmental discussions have this Government had with the Welsh Government on the constitutional implications of this Bill in particular?
Baroness Merron (Lab)
As noble Lords will be aware, engaging with the devolved Governments is a matter for the sponsor, not the Government.
Lord Empey (UUP)
My Lords, we have heard talk in this debate about respecting the devolution settlement. No, we do not. It is not that long ago, for instance, that the Northern Ireland Assembly voted against abortion but got abortion, and everybody on both Front Benches voted for it. So let us not fool ourselves that we have this great commitment to devolution and respect the views of the relevant assemblies. No, we do not.
Lord Falconer of Thoroton (Lab)
I express my personal pleasure at seeing the noble and learned Baroness, Lady Prentis, back in the House. She was an extremely successful Attorney-General because she was wise and knew the law. I am very glad that she is back here to keep us in order.
On issues in relation to Wales, we have understood throughout the importance of complying scrupulously with the devolution settlement. The people of Wales have to be respected and the devolution settlement has to be respected. On two propositions here, there is no doubt.
First, this is about the criminal law. If a Bill were passed in the Senedd that sought to change the Suicide Act under the existing devolution settlement, it would have no effect because it would not be within the Senedd’s power to do it. That has to be dealt with by this Parliament.
Secondly, and separately, as a matter of practicality, how assisted dying is to be introduced in the health service and the provision of health in Wales is, in practice, a matter for Welsh Ministers. The approach that we have taken is that this Parliament must deal with the criminal law and Welsh Ministers must be left to deal with the decisions about how it is introduced. It may be that that requires an Act of the Senedd. Because of that possibility, we have included in the Bill the power for Welsh Ministers to give the National Health Service in Wales the power to take steps. That power would normally be given by the Senedd, but so that there could be no doubt about that, and so that it would not wait upon the Senedd, we have included it in the Bill.
Constitutionally, we are allowed to include it in this Bill. Even if there was no legislative consent Motion agreeing to it, we could go ahead without the consent Motion. I and the sponsor in the other place have made it clear, specifically and in writing, that we respect the devolution settlement and that if there is no legislative consent Motion in Wales that consents to this Parliament legislating in an area normally dealt with by the Welsh Senedd then we would withdraw those provisions, because we would not be respecting the devolution settlement. From our point of view, we have proceeded with these provisions only once the LCM has been given. That is our position in relation to it.
I shall now deal with the amendments in that context.
Lord Falconer of Thoroton (Lab)
Could I just deal with this? The noble Lord can come back at the end.
I shall deal first with the 28 amendments proposed by the noble Baroness, Lady Coffey, to remove references to Wales. They would mean that this Bill would not apply to Wales and the Welsh Senedd would not have the power to make a change. As the noble Baroness, Lady Smith, said, this would leave Wales completely in limbo. These amendments raise precisely the same principle that was raised in the first group of amendments that we debated in Committee. I am against these amendments. They do not respect the devolution settlement.
The second group of amendments is, effectively, Amendment 844, which was very well introduced with clarity by the noble Baroness, Lady Smith. She, supported by the noble and learned Lord, Lord Thomas, is saying that we should change the devolution settlement so that criminal justice can be dealt with in Wales. I understand the point and the principled position from which it comes as far as the noble Baroness is concerned. Again, I am against that change. This is not the Bill in which to change the Welsh devolution settlement.
Lord Falconer of Thoroton (Lab)
Let me finish.
In my view, the right answer in relation to this is that we respect the devolution settlement, and it is for the United Kingdom Parliament to decide whether the law is changed in England and Wales. It is worth pointing out that 75% of Welsh MPs voted in favour of the Bill at Third Reading in the House of Commons.
Lord Harper (Con)
I shall make two linked points. The noble and learned Lord set out clearly the decision that he and the sponsor of the Bill in the Commons made about how to implement it, which was for the Bill to change the criminal law for England and Wales. The alternative way, as set out in the amendment proposed by the noble Baroness, Lady Smith, is not to change the whole devolution settlement but to make a narrow change specifically for offences relating to suicide. When drafting the Bill, did the noble and learned Lord consider changing that aspect of the settlement and giving that power to change the criminal law as regards assisting suicide to the Welsh Senedd? If he did, why did he come up with his conclusion, given that it has this complexity about the constitutional settlement?
Lord Falconer of Thoroton (Lab)
Our approach to this has been to respect the devolution settlement, which, for better or for worse, unquestionably leaves criminal justice to this Parliament, not to the Welsh Parliament. I thought that was the substance of the argument that I was making. We should not change the devolution settlement in this Bill. I respect and understand the argument that the noble Baroness, Lady Smith, and the noble and learned Lord, Lord Thomas, are making, but I do not accept it.
Baroness Smith of Llanfaes (PC)
Will the noble and learned Lord clarify whether, if the Bill were to pass, the Welsh Government would be able to widen or limit eligibility for the service in Wales?
Lord Falconer of Thoroton (Lab)
The Welsh Government would not be able to widen or reduce the eligibility of an individual for assisted dying. A person would not be in breach of the criminal law in Wales only if they complied with every aspect of the safeguards in the Bill. The Welsh Government’s role would not be to determine who qualifies for an assisted death. In the light of those provisions, it would be only how they introduce delivery of it in the Welsh health service.
There were a large number of other interventions, particularly from the noble Lord, Lord Deben. It was completely unclear whether he is in favour of the Welsh health service having the ability to do that. Whatever his view, I make it absolutely clear that it is for the Welsh health service or Welsh Ministers to decide how it is introduced. It must be in accordance with the statute, but it is for them to decide, and that is why we have given them that power.
I shall go on to the third category. This is not a Welsh Ministers issue, but a Secretary of State issue. The noble Baroness, Lady Finlay of Landaff, made the point that he should not have a Henry VIII power as wide as the one given. I see considerable force in what she said. She asked whether I have an answer that says that this is a parallel with the Brexit provisions, which is the only time that this has been done. I do not have an adequate answer in relation to that, so I should go back and think about how I can appropriately limit that power. However, I make it clear that that is not about the Welsh issue but about the width of the power that the Executive should have. I see the force of what the noble Baroness and the Delegated Powers Committee said.
Lord Wolfson of Tredegar (Con)
I am not sure that the noble Baroness, Lady Smith, got a complete answer to her very interesting question. I remind the Committee that she asked what the powers of the Welsh Ministers would be in this regard. Of course, the noble and learned Lord is obviously correct when he says that the Welsh Ministers could not say, for example, “If you have nine months to live, we are going to allow you to access the service”, because that would go beyond the scope of the Act and impinge on a criminal law issue, which is the purview of Westminster. What if they were to say, “We will only, as a matter of health service, allow you to access this if you have three months or less to live”? Would that be within their competence, with their health hat and not their criminal law hat on? I wonder whether that was the point behind the question asked by the noble Baroness, Lady Smith. I am not sure she got an answer to that point.
Lord Falconer of Thoroton (Lab)
The health service could determine who it is going to make it available to free, but it could not prevent other people—for example, private providers—having different provisions in relation to it.
The next category of amendments was in relation to removing Scotland. I gave an answer to the noble Lord, Lord Stevens, in relation to that in the course of the debate.
Lord Stevens of Birmingham (CB)
Perhaps the noble and learned Lord will clarify the answer he gave on Scotland. I think he is saying that even though the Scottish Parliament has decided that assisted dying should not be lawful in Scotland, a Scottish hospice could nevertheless not prevent its employees doing something that would be unlawful in Scotland if they travelled across the border to perform that act in England. Is that the consequence of what he is suggesting?
Lord Falconer of Thoroton (Lab)
This was picked up by the noble Baroness, Lady Merron. She focused, rightly, on what would happen in the case of a doctor who lived in Scotland but worked in England. The question was: could they be prejudiced? The answer is no—employment law would apply, and employment law is right across the country. On what is not being done in relation to the Bill, it does not refer to Scotland, because in Scotland they are awaiting the Scottish Bill. It is entirely focused on the protection of people working in England. That is why it is there. It is also focused on advertising coming from Scotland into England. So it is not in any way dependent upon what might happen in Scotland.
Lord Harper (Con)
That is an answer, but a deeply unsatisfactory one. That is exactly what was done when this was set up in the first place. It led to years of disputes, and to constituents living in England being unable to access the health services to which they were legally entitled. They had to have services in Wales that were less good in respect of waiting times. That is a deeply unsatisfactory answer. The consequence will be a situation leading to lots of complicated workability issues on the ground; that is why I flagged it to both the noble and learned Lord and the Minister on day one. If it is not thought through, it will become a practical issue that will have to be resolved, and if it is going to be resolved, it would be better to resolve it now.
Lord Falconer of Thoroton (Lab)
I have sympathy with what the noble Lord says. I do not think it is appropriate for that sort of issue to be resolved in a Bill such as this, and it goes far wider than assisted dying.
Baroness Smith of Llanfaes (PC)
I thank the noble and learned Lord for giving way. I have one final question of clarity. If the Bill were to pass here, what would happen if the Welsh Ministers, whoever they may be, did not lay the regulations but the Senedd as a whole supported having those services delivered in Wales? What power would the Senedd have to be able to push for an assisted dying service if Welsh Ministers did not lay the regulations?
Lord Falconer of Thoroton (Lab)
I have two points. First, we have made it clear in the Bill that there is no obligation on Welsh Ministers to lay the regulations. In England, they must lay the regulations. In Wales, they may do so; they have a discretion because we thought it appropriate that they should have that choice. If they do not exercise that power, my understanding is that it would be open to the Senedd to pass an Act saying that this has to be done. If no such Act were passed, or the Ministers did not decide to exercise their power under the regulation-making power in this Bill, the consequence would be that the National Health Service would not offer assisted dying in Wales.
Lord Gove (Con)
I want to clarify absolutely what the noble and learned Lord the promoter of the Bill is saying. I believe he is saying that, if the Bill passes, we could have a situation where assisted dying is legal in Wales but the NHS does not provide any service—that is theoretically possible—it would be a private service that would be available to citizens in Wales but an NHS service that would be provided in England; there would be that distinct difference. I would just like clarity on that.
Lord Falconer of Thoroton (Lab)
That is exactly right. That is why we have given the Welsh Ministers the power to do it. It is for them to decide, because it is not for either the UK Parliament or the Secretary of State here to determine it.
Lord Gove (Con)
Again, for clarity, if it were the case that Welsh Ministers thought that NHS resources were better devoted to improving palliative care, for example, or to doing something else, if they said that they would not be providing any resources to support assisted dying, then it would be legal but unfunded. It would be a private service in Wales while it was an NHS service in England.
Baroness Coffey (Con)
My Lords, we have covered quite a range of issues. I had intended for this to be about the decision-making process. The noble Lord, Lord Pannick, referred to Groundhog Day; it has not been Groundhog Day as far as I am concerned. On the very first day, there was an opportunity for the Government to set out a bit more. People have talked about how it would have been better if this was a government Bill. Actually, if the Government had answered a lot more questions, and had not blocked freedom of information requests to understand what is going on between the sponsor of the Bill and some of these devolution issues, we could have had more progress.
I was grateful to the noble Baroness, Lady Smith of Llanfaes, and the noble and learned Lord, Lord Thomas of Cwmgiedd, who agreed on the first day that we would not cover every single issue about Wales. This was done very deliberately, so that we could have a proper, detailed debate about the governance structure applying in this case.
I have already set out that I would be inclined to support many of the amendments tabled by the noble Baroness, Lady Smith, to transfer some of that decision-making. As the noble and learned Lord, Lord Thomas, pointed out, on the issue of smacking, that has already happened. I did not think that it would be that different or that radical for the issue of assisted dying also to be considered a competence to be passed across to the Welsh Senedd and Welsh Government.
The suggestion has been that I am just trying to disrupt this happening in Wales. It is more about the governance, and that is why we have returned to it at this point. I remind people that, on day one, there was an opportunity for the Government to set out matters and also to consider some of the cross-border issues that were referred to.
I also point out to the Committee that it was decided last week that we would finish the debate early. Nobody had spoken to me about moving the group to today. I feel that we could have covered quite a lot of the issues before 6 pm last week, but that was a decision made by the Government Front Bench without consultation. That is why we have ended up where we are and probably the debate has been a bit longer. However, this is still, frankly, an unsettled issue, an uncomfortable issue. I still strongly support that we should consider transferring this to the Welsh Senedd for the future. With that, I beg leave to withdraw my amendment.
The Deputy Chairman of Committees (Baroness Morgan of Drefelin) (Lab)
My Lords, I inform the Committee that, in the next group, we will be joined by a remote speaker. I shall call the remote speaker directly after the next amendment has been proposed.
Amendment 167
Baroness Fraser of Craigmaddie (Con)
My Lords, I want to bring your Lordships back from Wales to the speech, language and communication issues that affect everybody equally right across the United Kingdom. My amendments in this group, Amendments 167 and 546, seek to ensure that people who have serious speech, language and communication issues have an element of protection in the Bill and that they are supported in accordance with best practice. I remind noble Lords of my interest as chief executive of Cerebral Palsy Scotland. I have drawn on my organisation’s experience of supporting people with serious communication issues to inform my remarks.
Amendment 167 is a probing amendment designed to explore the specifics of what is meant by seeking assistance. This is not about the requirement to self-administer, which, if we get to it, will be explored later in Clause 25. This section is to do with the preliminary conversation. Amendment 546 would simply add those with communication and speech difficulties to the list of those who may be provided with an independent advocate in Clause 22.
The Bill currently sets out in Clause 5(4):
“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters”.
I have taken that to cover those for whom English is not their first language, but I am not convinced that it covers a situation where someone has to communicate using augmentative and alternative communication, known as AAC. I shall 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 such as 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, 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 is not typical, as they will be restricted to a limited vocabulary.
There are tools—Amendment 172 from the noble Baroness, Lady Grey-Thompson, 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. The individual themselves does not have free choice of the words that they can select. Now put that individual in a context where they have been diagnosed with a terminal disease and they meet all the criteria of the Bill 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 that it is their free and settled choice to die?
Much of our communication with people who have complex communication needs is co-constructed. Tools such as Talking Mats or Makaton rely on a professional making the initial choices and making assumptions. 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? 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? Amendments 322, 322A and 406 from the noble Baroness, Lady Grey-Thompson, speak about communication in accordance with a person’s needs and wishes, providing translation in a format of the person’s choice and recording, if communication needs have been identified, how they have been met. 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 whom we support, they may be literate and use devices that use typing and predictive text—may have the vocabulary to make their views known, but only if they are given the time, space and support to do so. I do not know if any noble Lords have ever tried to communicate through an AAC device. 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 and choose the word. It requires incredible skill and concentration, and it is exhausting. You have to really concentrate because otherwise your eyes go off and you do not say what you want to. It is essential to allow sufficient time within the appointment to retrieve longer messages, and fatigue and frustration are common.
Lord Shinkwin (Con) [V]
My Lords, I shall speak to Amendment 167 in the name of my noble friend Lady Fraser of Craigmaddie. In doing so, I should make it clear that I support the other amendments in this group, and I join other noble Lords in saying how good it is to see my noble and learned friend Lady Prentis of Banbury back in her place.
My noble friend Lady Fraser outlined how comprehension and communication can be a real challenge for some people because of their disability. The amendment invites us to think differently—to view the need for clarity from their perspective, not ours. That means our accepting that what may appear to many to be an unnecessary clarification will, to others, be essential.
Whatever position one takes on either the principle of assisted dying or indeed the Bill, surely the case for making the language in the Bill as clear as possible, for both the many and the few, is overwhelming. Doing so is ultimately about meeting the anticipatory duty to make a reasonable adjustment on account of disability. It was your Lordships’ House which helped to write that duty into law when it passed the Disability Discrimination Acts of 1995 and 2005 and the Equality Act 2010. Amendment 167 therefore gives us an important opportunity to show that we, as a law-making body, honour the duty to make reasonable adjustments, just as we require by law others to abide by that duty.
I hope the noble and learned Lord will recognise our responsibility to be seen to lead by example and to ensure that the wording of the Bill is in keeping with that duty, clearly and unambiguously. I hope he will consider my noble friend’s 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.
Baroness Berridge (Con)
My Lords, Amendment 174 is in my name, and I am grateful to the noble and learned Lord for the meeting on this issue. This amendment states:
“Any interpreter provided under subsection (4) must be aged 18 … or over”.
It is a probing amendment.
If you put two lawyers in a room and give them wording from the NHS guidance saying that it is “inappropriate” to use children, you would have a fascinating discussion about discretionary versus mandatory, and that is the point behind this amendment. It might be that a different age, say 16, is appropriate, but since meeting with the noble and learned Lord, I have looked at certain guidance from particular NHS hospital trusts. Leicestershire Partnership NHS Trust states that you “must not” use children. The Milton Keynes University Hospital trust says that children “should not” be used as interpreters. So we have overall NHS guidance using the word “inappropriate”, which seems to imply discretion, but then we have certain hospitals—I obviously have not checked them all—using mandatory language. It is important that we consider whether, in this scenario, there should be any discretion to use children, whether they are under 18 or, as I say, under 16.
The TIA process should be mandatory, because it is a substantial process. This is the communication of a profound state of affairs. It includes numerous complicated stages, from a preliminary discussion to different co-ordinating doctors. It involves a Mental Capacity Act assessment and could involve the discussion of quite sensitive information about the administration of lethal substances and their potential complications. It is a serious and, as we have said, irrevocable decision.
My submission to the Minister is that it should not be an option that interpreting lies in the hands of a child, but that we should provide for qualified, skilled adults to be present and to provide that service, so that any relative, including children, can sit, support and have their own potential needs met. Is the noble and learned Lord satisfied that this should be a service provided by the National Register of Public Service Interpreters?
This is not a small problem. The census in 2021 shows that around 7.1% of people in the UK speak English as a second language and around 5% do not speak English well at all. The NHS website states that there are 1 million people who do not speak English well at all, who will need assistance with communication. If we do not provide this within the Bill, it might be that relatives, particularly children, are used in situations where the interpretation services are underfunded in that area—it is local commissioning that provides interpretation services.
I acknowledge that noble Lords may want the lower limit of 16, which some hospitals use, but I find it interesting to note that the limit may in the past have been too low. The former Member of the other place, Sajid Javid, talked about this. He said of his mum:
“I used to go to the doctor’s surgery with her—not because I was ill, but because I had to interpret for her. I was six or seven and an interpreter”.
I believe we should make sure that children in our jurisdiction are not placed in that situation.
From the evidence that was given to the Commons Public Bill Committee by Dr Jamilla Hussain, who is a palliative care specialist, we know that this issue disproportionately affects ethnic-minority communities, though not solely, of course. There are numerous reports of poor communication and interpretation that lead to adverse health effects and life-threatening illnesses being more prevalent in those communities. It would be the safest way possible if we put something mandatory into the Bill that does not allow for the possibility of situations where a young person feels they cannot say something, having been alongside their parent or guardian for many years. Putting something mandatory can actually protect those young people.
In relation to other clauses in the Bill, we have spoken about the profound effect on young people’s brains and development—I believe this is relevant and not repetition—of traumatic events such as the death of a close family member. That casts a new light on the possible neurological impact that interpretation by a child for a relative seeking assisted dying could have; it could give rise to further health conditions as they develop. Reports state that, if a child’s hypothalamic-pituitary-adrenal axis is faced with traumatic stress—in this instance the loss of the primary carer—it can lead to long-term functional and structural changes in key areas of the brain’s development. This can contribute to various psychopathologies, obviously including PTSD. Putting something mandatory into the Bill, so that children cannot be placed in this situation, is important to make it clear for all NHS hospitals which may have to deliver this.
It goes to a conceptual point, raised when I met the noble and learned Lord, about autonomy and choice. There are circumstances in which we limit autonomy and choice, particularly with children; we say that it is better for us all, as the legislature, to have taken a decision to protect those children. It should be mandatory that those under the age of 16 in this context are not taking part in the process of interpretation. It may be that, as we discuss this, there are situations and circumstances, such as terminal illness and advice about treatment, where it should be mandated that children are not involved as interpreters.
Baroness Nicholson of Winterbourne (Con)
My Lords, I will speak in support of my own Amendment 171, where I am suggesting that there is an adjustment to insert “hearing or visual impairments”. I declare an interest on both. First, I am a vice-president of Mary Hare School for deaf children, which is one of the world’s most wonderful schools for deaf children, not just in the United Kingdom but internationally; I have been a vice-president for a very long time, as were my parents before me. I do not speak on its behalf. Secondly, my other interest is that I recall my darling mother, who was completely deaf, completely blind and 100% paralysed for 13 months before she died, because of an unfortunate slip-up in an operation. It was, I am afraid, just one of those things. I therefore understand the needs of looking after someone who is 100% disabled, fully blind and fully deaf.
Lord Moore of Etchingham (Non-Afl)
My Lords, I was deeply interested by the remarks of the noble Baroness, Lady Fraser, and her amendment. I would like to confirm from personal experience that a young man very well known to me can barely speak at all. He has therefore been effectively silent all of his life. Through a system called Spelling to Communicate, it turns out that he has a vast range of knowledge and high conceptual skills, which have only been discovered very late. He is now communicating by these means, but he can only communicate, at this stage at least, through his mother. I very much support what the noble Baroness has said, but—forgive me if I have missed something—I do not quite understand how the wording of her amendment will achieve the effect she intends.
Baroness Fraser of Craigmaddie (Con)
I thank the noble Lord. By probing the words “seek assistance”, I am trying to explore what assistance is provided. The noble Lord is quite right in the example of his friend. There are people who cognitively can absolutely understand what is going on. Therefore, in the context of this Bill, they would understand the assisted dying process. But they would need help with the tools by which to communicate their will, and the time and space and sometimes the vocabulary to do that. I note that, in the noble Lord’s example, his friend has only recently come to it. An issue is understanding what the right thing is for some of these people. He also said he can, at the moment, communicate only through his mother. That is my other fear. Far too often with this population, people speak for them because they know them best. I hope that clarifies my intentions.
The Lord Bishop of Southwark
My Lords, I support the amendments in this group, particularly Amendment 171 in the names of the noble Baronesses, Lady Nicholson of Winterbourne and Lady O’Loan.
Clause 5, as we have heard, introduces a key element in the infrastructure of assisted dying in this Bill by providing what is intended to be a safe, but not mandatory, introduction to the subject of death with the assistance of another human being. For proponents of the Bill, the advantages of such an introduction are obvious. In their minds, it will remove a good deal of unnecessary distress on the part of those who wish to proceed with such an option and on the part of those who do not. However, as we have heard from those of us who have long experience of pastoral encounters, the experience is likely to be rife with pitfalls.
This amendment and the one that follows it, about which I shall say a little and leave it to others to say more, is designed to correct some very obvious impediments to mutual understanding. A good deal of communication is picked up visually. Visual impairment requires an extra dimension when communicating. My twin brother was born with a severe hearing impairment, so I speak with lifelong experience of what it is to communicate thoughts, directions, information and feelings appropriately to someone who has a hearing impairment.
Finally and briefly, for I understand that the right reverend Prelate the Bishop of Newcastle wishes to say more, I also commend Amendment 171A. My experience of 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 Falconer, will look favourably on these amendments, which are designed to provide assistance to women who may face coercion. Should the Bill become law, it will make the vulnerable more vulnerable as it currently stands. That 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.
Baroness Hollins (CB)
My Lords, I commend the introduction to this group by the noble Baroness, Lady Fraser. At the end of a person’s life, clear and honest communication really matters. When my husband was dying—he had motor neurone disease—he increasingly relied on AACs to communicate. This did indeed test everyone’s patience. People who are dying must be able to understand what is happening to them and what their options are, as well as being able to say what they want and need. But this works only if people understand, and that means that communication must be accessible.
I will focus my remarks on people with learning disabilities. Around one in six of the adult population struggles with literacy—not just people with learning disabilities. That is why the Bill should not just say that “reasonable steps” must be taken; it needs to be much stronger than that. It should say that they “must provide” adjustments, whether that is interpreters, simpler language or information in different formats. In the Equality Act, making reasonable adjustments is a legal duty, not a choice. It is about making sure that everyone is heard, understood and treated with dignity when it matters most.
Clause 39 requires a code of practice to address the provision of information and support to people with learning disabilities. Clause 40 requires the Secretary of State to issue guidance on the operation of the Act and to consult people with learning disabilities prior to issuing this guidance. I have not tabled amendments about this because I cannot think of any way to make this provision robust enough. For such consultation to be meaningful, it is necessary to understand more about how assisted dying could be explained and discussed with people with learning disabilities in a way that is accessible and non-coercive.
However, currently almost nothing is known about the views, understanding and perspectives of people with learning disabilities in relation to assisted dying. Understanding how they understand and make end-of-life decisions, and who or what may influence those decisions, is crucial. There are serious questions and concerns about influence that is far more complex than explicit individual coercion. People with learning disabilities often have very limited health literacy. Many have depended all their lives on others when making decisions about their health and social care. The mere fact of someone explaining the option of assisted dying may be perceived as an endorsement of assisted dying, especially if it is someone in authority, such as a doctor, nurse or care home manager. It is true that there is now mandatory training in learning disability and autism for all health and care professionals, but this is very basic training and does not include supervised communication practice.
I have discussed these issues with Irene Tuffrey-Wijne, who is professor of intellectual disability and palliative care at Kingston University. I declare an interest as the founder and chair of the visual literacy charity Books Beyond Words, which created a word-free picture book called Am I Going to Die? The word-free narrative was co-authored by me and Professor Tuffrey-Wijne and was informed by the professor’s doctoral research, which I supervised, about the experience of death and dying of people with learning disabilities. Noble Lords may be interested to hear that a pilot study has just started at Kingston University, in collaboration with the Down’s Syndrome Research Foundation and Mencap, to explore assisted dying and end-of-life choices with people with learning disabilities. We need to wait for the results of studies such as this before concluding whether it is possible to extend the provisions of the Bill to people with learning disabilities at all.
Lord Blencathra (Con)
My Lords, I rise to support the amendments in this group but first, if the Committee will permit me, I turn to face my noble friend Lady Nicholson of Winterbourne. She is absolutely right to criticise the lack of facilities for deaf people in this Chamber. Older parliamentarians may remember the wonderful Labour MP Jack Ashley, who was profoundly and totally deaf. Even 30 years ago, the House of Commons was able to produce some gadget for him so that he could follow proceedings. That was before the digital era. Surely, in the name of God, it is possible now to produce some gadget so that my noble friend and others who may be profoundly deaf can read the lips of all those of us who are speaking in this Chamber.
The Lord Bishop of Newcastle
My Lords, I am grateful to my right reverend friend the Bishop of Southwark for preparing the way for some of the comments that I wish to make briefly now. Broadly, this group seeks to address issues around communication, language barriers and interpreters and I support the amendments laid before your Lordships’ House in that regard.
Amendments 171A and 174A in the name of the noble Baroness, Lady Nicholson, would require the provision of an advocate for women who might have additional vulnerability to coercion, especially due to cultural and religious factors. It is a very interesting and significant idea, which highlights the complex factors at play in considering certain groups of people. It is often those who are subject to health inequalities who hold the most distrust towards the health service, and understandably so since we are still in the shadow, even now, of the pandemic.
The noble Baroness, Lady Berridge, has already raised the evidence given by Dr Jamilla Hussain earlier in the passage of this Bill. Dr Hussain warned us about failing to recognise this issue of inequality. She said that
“introducing this Bill without addressing structural inequities and mistrust will likely result in widening disparities, poorer end-of-life experiences for already disadvantaged groups and potentially inappropriate deaths”.
The provision for raising assisted dying with people, as currently in the Bill, could be highly damaging to the already strained trust in the health service.
Secondly, and briefly, I make a general point about issues of communication, language and interpreters. Again, Dr Jamilla Hussain talked about the challenges of having end-of-life conversations. She said that these are nuanced, sensitive conversations, and understanding is not always straightforward. I know myself how, when I worked and lived in New Zealand, I had to work very hard to communicate in another language, te reo Māori, but also to convey my words and my thoughts into that language and 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. It seems that we are left with a very difficult decision about whether we are prepared to live with the degrees of uncertainty that this then gives us, or whether we are going to somehow restrict access to any assisted dying service. I expect that neither of these is satisfactory. I support these amendments and urge your Lordships to consider them.
Baroness O'Loan (CB)
My Lords, I have put my name to Amendments 171, 171A, 173, 174 and 174A in this group. The group deals with obligations placed on a registered medical practitioner conducting a preliminary discussion to ensure that it will be possible for the patient to communicate well with the doctor, to hear and understand what is being said, to respond and, in so doing, to be understood. The Bill provides for adjustments for language and literacy barriers, including the use of interpreters.
In Amendment 171, so articulately presented by the noble Baroness, Lady Nicholson, she rightly seeks to add provision for hearing and visual impairments. By Amendment 171A, the noble Baroness also seeks to ensure that provision is made for cultural, religious and sex-based factors. This covers a wide range of situations, perhaps the simplest of which might be the reluctance of a woman to speak through a male interpreter in a discussion that might include matters of great sensitivity. Similarly, men may be uncomfortable or even distressed by having such conversations with a woman. Religious considerations may also be profoundly important to the person having the discussion. Many religions seek to deter suicide. This has to be taken into account, particularly to ensure that the person understands exactly what they are agreeing to and the consequences of taking whatever lethal drug is prescribed.
By Amendment 174A, the noble Baroness, Lady Nicholson, seeks to introduce an advocate with particular characteristics: having safeguarding experience in relation to cultural and religious issues and being of the same sex as the person contemplating asking for assisted suicide. Those are 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 Amendment 172 in the name of the noble Baroness, Lady Grey-Thompson. 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. I would mention that Rosie Cooper MP was the child of two profoundly deaf parents. She described to me the last days of her father, who was dying at an advanced age with many complications. The problem was that it was not possible for a sign language interpreter to be there when they needed to talk to him and Rosie was finding that she had to go in so often to try to make sure that her father was safe and understood the discussions and what was being put to him. This is a profoundly important matter. In addition, Amendment 173 would provide for those who are blind or partially sighted being able to use amanuenses or Braille.
It is not appropriate—though it does happen—for children to be used as interpreters when their parents or family members are sick. The noble Baroness, Lady Berridge, has referred to that. As one who dealt with complaints in a northern health trust, I received complaints about children being used at the age of 10 or 11 to discuss their parents’—particularly their mothers’ —intimate medical conditions, something that was entirely inappropriate for children. I suggest that, if it is 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. Therefore, I support the noble Baroness, Lady Berridge, in her amendment to preclude the use of children as interpreters.
I support all these amendments and those of the noble Baroness, Lady Grey-Thompson. Her Amendments 322 and 322A would require a version of any report to be provided in a person’s preferred language or in an accessible format of their choice. Amendment 406 seeks to assure compliance with that requirement by requiring a record to be kept of the communication affecting any patient.
In a country in which there are almost 1 million people with learning difficulties and in which more than 100 languages are spoken—many of those languages do not contain words that are present in the English language, such as “safeguarding” or even “suicide”, and, in many cultures, there are difficulties in discussing suicide—any discussion about whether a person wants to be prescribed and take lethal drugs that will end their life must be conducted with the utmost rigour, to ensure that those making this final decision are under no pressure and will have a full and complete understanding of what is being proposed and what consequences, including any complications, there may be.
Will the noble and learned Lord, Lord Falconer, now support these amendments to make the requirements cover needs beyond language and literature? Surely that is proportionate to the seriousness of the 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 has increased concern in the House and that these specific amendments are necessary?
The noble and learned Lord’s use of the words “take all reasonable steps”, to which my noble friend Lady Hollins has just referred, implies that there are steps that can be taken to ensure effective communication but are perceived to be too much effort or disproportionate. 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 explicitly provide for the categories of people referred to in this group.
Baroness Nicholson of Winterbourne (Con)
My Lords, I follow the noble Baroness, Lady O’Loan, with reference to our shared amendment, Amendment 174A. I apologise for not raising this in my previous discourse, but the differences are so acute that I just did not feel it right to share them in the same comment, and I believe the Companion allows me to speak twice in Committee.
I declare an interest in this amendment’s matters as I have worked with enclosed communities for most of my life. My most recent responsibilities have been with the AMAR International Charitable Foundation, which I founded about 35 years ago. We have worked consistently with the enforced enclosed community of the Marsh Arabs and the enclosed communities of the Yazidis—the genocide victims—and others, covering different parts of the globe. I work particularly closely with the Church of Jesus Christ of Latter-day Saints—the Mormons, as they were known—and with other enclosed communities.
My concern today is for Muslim women. We have two minority faiths in the United Kingdom where women are deemed to be secondary to men. As the noble and learned Lord will realise, I know very well that women are actually superior to men, not inferior. I am not quite sure whether I will cause a dispute between the right reverend Prelates the Bishop of Newcastle and the Bishop of Southwark on this, but either way I welcome and endorse what they said about minority faith communities in the United Kingdom.
I am speaking particularly strongly about Sunni women who do not speak English. I am sorry to say that, because we in the United Kingdom have made so little effort to help these women become numerate and literate in the language of this country, there are at least a quarter of a million of them—there may be more. Those women, some of the men in their family and even those running the religious side of their lives may believe that verse 74 of the Holy Koran—which places women subservient to men in all cases and puts them at risk of physical violence if they disobey—is the law here. They do not speak English and they do not know our law. Many of them are functionally illiterate and non-numeric in the language of the countries from which they came. In some of those countries, in particular Afghanistan, women do not legally exist at all. The World Health Organization tells me that Afghanistan is the only nation in the world of which this has ever been known.
If a woman comes here from a country such as that—a unique country, in that women do not exist—they will not understand that they are actually a full person here, that they have rights and that they are on the same level as everyone else. It does not matter whether they have money or who they are; if they are a citizen of the United Kingdom, a visitor or even an illegal immigrant, they still have that right as a woman and a citizen.
My colleague on the Cross Benches referred to children in this context. The United Nations Convention on the Rights of the Child was drafted here in this Chamber by our former Member Baroness Faithfull, who was a great lady. The convention, on which I have worked all my life, is very clear about the rights of children, but these rights will not exist in the minds of these women because they do not know about it. That is our fault and our failing as a nation. We have made no effort: we have not helped them learn English, to get out, or to understand their rights here. This is coming not just from Afghanistan but from Sistan and Baluchestan, where it is believed that a woman must drape herself completely. That is not in the Holy Koran at all; there is nothing like that in the Koran.
I hope that all Members of your Lordships’ House have read the Koran. It is an interesting, rich and full document—I have read it a number of times, and it is important that we understand it. It does not say what some of its practitioners claim or offer.
I also suggest clearly that UK law predominates. These women and the men who work with them—who are their families, maybe even groomers—believe that they are doing the right thing. The new law in Iraq, a country I know intimately, declares that girls of nine may be married to men of any age. A huge number of boat people come from Iraq. It is well organised by northern Iraqis in Iraqi Kurdistan who have a wonderful business going, bringing illegal immigrants by boats across the channel to Britain. If you come from Iraq, you come with that thinking and that background. Unless you are taught British law, you will not have any understanding of what you are.
This abuts on our discussion if you are nearly dying—or possibly you are not, but your family wants to get rid of you. It is worth remembering that 11% of all deaths, which is the highest number, are those who have Alzheimer’s or similar diseases. Someone could say: “Mum’s a bit of a burden; granny’s even worse. Aunt can go as well. What about cousin? What about my sister? I don’t actually like her. They will do as they are told”. This will, in a true sense, crucify them. As my noble colleague just said, certainly in Islam, suicide is outside, so they will be declaring themselves to be outside their own faith. Do we expect them to understand enough to do that? I do not think so.
My suggestion to the noble and learned Lord, Lord Falconer, is that perhaps he would grant me a meeting. Since this is not a government Bill, I have taken this round the various religious centres for Islam in London. Nobody has consulted them, and they really like to be consulted because suicide is against Islam. The question they ask me is, “Why haven’t the Government been to see us about this?” I put this forward.
Lord in Waiting/Government Whip (Lord Leong) (Lab)
May I ask the noble Baroness to speak to the amendment?
Baroness Nicholson of Winterbourne (Con)
This Private Member’s Bill has not been discussed with the mosques in London, nor anywhere else. My suggestions are that we have a meeting, that I bring suitable people with me and that we start to open this up. It is against the faith to commit suicide, so this is very important.
Lord Falconer of Thoroton (Lab)
Of course I agree to a meeting and the noble Baroness should bring anybody she thinks appropriate to it.
Lord Polak (Con)
My Lords, I will raise 50% of a registered interest: I am 100% deaf in my left ear. The maths works, right? My right ear is quite good, thank God, but it is useful in many aspects of my life when I pretend that I did not hear at all.
I support all the amendments in this group. I was not going to speak, but I am moved to speak to Amendment 171 from the noble Baroness, Lady Nicholson, whom I have known for many years. I pay tribute to her bravery and courage, which has enabled her success in her life of service to vulnerable people, and to my noble friend Lady Fraser for her Amendment 167, which she so eloquently introduced. Her professional work with people who often cannot communicate for themselves is well known.
The point I want to make to people who support the Bill and want to rush it through is that this group of amendments shows the vital importance of the process that we are going through. It is a real disgrace that these people are intent on trying to rush this flawed legislation through without this sort of vital discussion. These amendments may affect one person to whom by accident, by being unable to communicate or hear, the wrong thing happens. The Bill should be, and should work, for every individual. That is why I urge the noble and learned Lord, Lord Falconer, to find a way to include these matters and these important aspects in the Bill.
Lord Empey (UUP)
My Lords, I think everybody must have been affected by the comments from the noble Baroness, Lady Nicholson. She made very sobering revelations about her experience, which is very broad and much to be admired.
This group of amendments brings into sharp focus the sheer scale of the complexity of bringing assisted suicide into the NHS context. We have heard pleas from the movers of some of the amendments that specific provision be considered because of the needs of those with complex communication difficulties, including hearing, language and cultural challenges.
I will draw the House’s attention to other matters that have not been addressed in the context of a busy hospital with overworked staff. In addressing other groups of amendments, I said that many people seem to view the operation of the current NHS through rose-tinted glasses. Hospitals these days are not as they are portrayed in the TV series “Heartbeat” or “Call the Midwife”, which are set in the 1960s. Gone are the days when consultants had time to come round for friendly chats at their leisure with patients and family. Parliament and Governments have demanded that targets be met because of increasing demand and a relentless growth in our population. Meeting targets means throughput, and throughput means patients going in and out as quickly as possible. I struggle to see how the Bill, if enacted, can be safely implemented in current hospital settings.
In a busy NHS ward, consultants doing their ward rounds in the 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 with poisonous substances, and co-ordinating all the relevant personnel at the right time to oversee this, will be a mammoth task in our overstretched NHS.
Let us look at some of the realities to which this group of amendments draws attention. We have discussed language. I was astonished to learn that, in London alone, 300 languages are spoken. Some 1.7 million Londoners do not have English as their first language, and 300,000 or more do not speak English at all. That is equivalent to the population of a city such as Cardiff or Glasgow.
Baroness Thornton (Lab)
I declare an interest as a non-executive director of the Whittington Hospital, where we serve many of these communities. I can assure the noble Lord that we put a lot of resource, very successfully, into supporting our clients and patients, from whichever group they come and whatever capacity problems they may have. You have to live in these communities to understand that the NHS is completely aware of the need to do that.
Lord Empey (UUP)
I am delighted to hear that, but I am also very aware of the pressures on an NHS hospital—perhaps not in London but in other places—where the staff are run off their feet day and night. We are imposing—
Baroness Thornton (Lab)
I also note that I come from Bradford, where all my family live, and we do the same there, too.
Lord Empey (UUP)
I am delighted to hear that, but I can assure the noble Baroness that it is not a universal situation. As I was saying, 1.7 million Londoners do not have English as their first language and 300,000 do not have English at all—that is equivalent to a significantly sized city. According to the 2021 census, only 63.8% of households consisted of members who all had the same main language—I think that the noble Baroness, Lady Berridge, also mentioned the 2021 census. Some 6%, or 1.5 million households, consisted of people who had different main languages in the same house. Those figures are five years out of date, and with the surge in immigration since then, I am sure the figures are much greater.
The noble Baroness, Lady Nicholson, highlighted the circumstances of people with hearing difficulties. Added to that, in a traumatic situation of discussing whether a person wishes to be assisted to die, how will a patient be able to absorb such difficult information from a medical practitioner who perhaps does not have English as his first language or vice versa—a medical practitioner may have a patient whose first language is not English?
Baroness Grey-Thompson (CB)
My Lords, I have Amendments 172, 322, 322A and 406 in this group, which address the requirements of accessibility, BSL and Braille.
In speaking to her amendments, the noble Baroness, Lady Fraser of Craigmaddie, raised a number of issues. While I tabled all my amendments before the start of Committee, her speech showed some of the areas where there is still some cause for concern—certainly, around things such as programmable text and the way that it is used.
My noble friend Lady Campbell of Surbiton is not able to be in her place today, but she raised the issues faced by Lucinda Ritchie, who, as a woman who used communication aids, had to go to a care home. The nurses were not able to set up the communication aids, and she, in essence, became voiceless.
As the debate today has highlighted—in the words of the noble Baroness, Lady Nicholson—if this Chamber cannot provide reasonable adjustments for Members, that reflects a bigger problem that exists outside in terms of whether people can really understand what is going on.
The Bill takes its foundation from the Mental Capacity Act. We have to get to grips with whether someone can understand, retain and use information. I am against the process of assisted suicide being called treatment. If we cannot communicate with people properly, the individual might be confused about what they are being told.
In New Zealand, as has already been raised, people have to ring a phone number. Dr Jeanne Snelling said that it is completely inappropriate. A deaf person cannot ring a phone number, so they might not be able to access the service that they want.
I have amendments on reporting mechanisms, but I am keen to understand what issues also might be highlighted from these discussions and whether one impairment group is disproportionately affected in accessing this service. That is why Amendment 406 says that we need to record when people’s accessibility needs are not met. Clause 39(1)(d) gives a power to the Secretary of State to introduce codes. I hope that the breadth and depth of debate in this group will inform that.
The National Down Syndrome Policy Group, as already mentioned, said that it is essential that people are able to understand what is going on, but the Easyread document from the NHS on the Mental Capacity Act is 28 pages long and is complicated. It is difficult to get true consent when we know that people with Down syndrome are already suggestible and potentially eager to please others. We know that people with learning disabilities and deaf people already have lower health outcomes than others. There was the tragic 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. He was not able to communicate, and the staff were not listening when he asked for food. They just looked at the “nil by mouth” and assumed that he did not know what he was talking about.
The equality impact assessment has identified that there are some areas of concern. It should be noted, too, that British Sign Language is not a direct translation of English. We missed a trick, when we were doing that legislation, in not going into greater depth with it, but we have to be clear about how we provide appropriate translation.
The noble Baroness, Lady Fraser, raised speaking difficulties. I met someone for the first time recently. We had no issues communicating at all. It was only after about 10 minutes that they mentioned to me that they had had a stroke, and they felt that they were struggling to speak and find the right words. You could easily make an assumption that someone’s communication skills are very good, when indeed they are not.
One of the issues is that we do not have enough people who are able to use British Sign Language. I accept that Makaton is not a language and should in no way be confused with BSL, but about 100,000 people use it as a communication aid. There are 1,200 licensed tutors, and they train about 20,000 people annually. I should have probably made it clear in the amendment that Makaton and BSL are not interchangeable. In a different context, we certainly should not replace Québécois with French, or Swiss German with German.
We talked earlier about Wales. I am Welsh, and I think it is important that we discuss these issues. I grew up in a semi-fluent household, and my mother spoke very colloquial Welsh. Depending on who speaks to me, I can understand quite a lot, but what one takes from a conversation can be very different. That is why I am concerned about this group of amendments.
My noble friend Lady O’Loan raised the issue of translation. In 2017, I did a piece of work for the then Government on duty of care in sport, and the word “safeguarding” is not translatable into other languages. Even where it is translatable, its meaning can be very different, and 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 that 33% left consultations with their family doctor feeling unsure about instructions or taking the correct doses of medication. We have seen in the media that a deaf man was wrongly told that he had HIV after the hospital failed to provide an interpreter. There is the case of Derlyn Roberts, an American woman who famously pretended to be a sign language interpreter at a high-profile news conference in Tampa, Florida, where the police were announcing the arrest of a serial killer. She could not sign at all, and experts described her interpretation as gibberish. Members of the deaf community were very upset, and the deaf mother of one of the victims of the serial killer was present and was relying on the interpretation. Just think how distressing that is. However, there are good examples. At the St Helena Hospice, people who prefer to use BSL can communicate with nurses by clicking the BSL live button. Deaf patients or visitors can choose to use that service, so it is possible to provide appropriate translation.
We should not presume that the person with the communication barrier is the patient. It might be that the doctor has some challenges in translating, understanding or, indeed, communicating. I am delighted to learn that doctors are now getting much better training in how to communicate with patients, but this could be improved. The GMC guidance says that steps must be taken to meet the needs of individuals, but each stage of the process relies on an open choice. If discussions are not accessible because of a language or communication barrier, any perceived safeguards in the Bill are simply worthless. The noble and learned Lord has said many times that everyone should have equal access to the process, but for deaf or disabled people and for those who have a combination of impairments, it is really important that they are given genuinely equal access to the process and that they understand every step of the pathway.
The Earl of Effingham (Con)
My Lords, before I speak to the substance of the amendments in this group, I pay tribute to the noble Baronesses, Lady Nicholson, Lady Berridge, Lady Fraser of Craigmaddie, Lady Grey-Thompson, Lady Hollins and Lady O’Loan, and the right reverend Prelate the Bishop of Newcastle. They have all stood up for a particularly vulnerable group of people, and they are absolutely right to do so. I am sure that the noble and learned Lord, Lord Falconer, is listening most carefully to their arguments.
Individuals with speech, language and hearing difficulties are particularly vulnerable, and it is imperative that they fully understand the process, their rights and the terms of the Bill before they can access the provisions made within it. My noble friend Lord Blencathra said that we really need to know that an individual understands what they are doing, and the noble Baroness, Lady O’Loan, used the phrase “crystal clear”. They are both absolutely right.
Surely how society cares for the most vulnerable of its citizens is an unmovable benchmark. Society must protect people with communication difficulties. The noble Baroness, Lady Berridge, specifically questioned the Government, and His Majesty’s Loyal Opposition believe that it is fair and reasonable to ask the Minister what specific work officials and Ministers have undertaken to establish the core risks posed by the Bill to those with hearing, speech and language impediments. In the view of His Majesty’s Government, how effective are the safeguards currently in place? 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 that 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, during the course of the Bill, noble Lords have debated detailed provisions and addressed complex moral issues with a laser focus. However, the question at hand is not a complex one. Those who are not able to understand the situation without proper support must be provided that support if they are to take the decision to end their life. Surely that is non-negotiable.
The noble Lord, Lord Shinkwin, said that we have to think differently and challenged the noble and learned Lord, Lord Falconer, to lead by example. The right reverend Prelate the Bishop of Southwark took the words out of my mouth when he said that he remains hopeful that the noble and learned Lord will agree with this line of thought and 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.
Baroness Merron (Lab)
My Lords, I am most grateful for the debate that we have had today. In keeping my comments limited to amendments on which the Government have major legal, technical or operational workability concerns, I turn first to Amendments 171A and 174A, tabled by the noble Baroness, Lady Nicholson. The duty outlined within these amendments may prove difficult for doctors to discharge as they are ambiguously drafted and use undefined terms such as “religious, cultural or sex-based” barriers. It is also a mandatory duty that does not afford discretion to the doctor to refuse unreasonable requests.
The duty to appoint an advocate conflicts with Clause 22. It is unclear how these proposed advocates would be appointed or trained, or what their role or responsibilities would be. Furthermore, your Lordships’ Committee may note that where a person has religious, cultural or sex-based barriers, the amendment would also require such a person to be provided with an advocate who has training in and experience of relevant safeguarding issues and must be the same sex as the person seeking assistance. Introducing a more extensive mandatory duty for the provision of adjustments, including an advocate, may give rise to workability issues, as the cohort of advocates meeting these criteria could be very limited and may result in a person being delayed or unable to take part in a preliminary discussion.
Lord Falconer of Thoroton (Lab)
I am very grateful to the noble Baronesses, Lady Hollins and Lady Nicholson of Winterbourne, for sharing their experiences with us—in the case of the noble Baroness, Lady Nicholson of Winterbourne, the death of her mother and the circumstances of her mother’s life; and in their case of the noble Baroness, Lady Hollins, the circumstances of her husband’s later illness.
These amendments concern ensuring that people with communication difficulties, hearing difficulties or particular cultural pressures are properly able to access assisted death, but also, very much picking up the words of the noble Earl, Lord Effingham, that they should have an assisted death only if it is crystal clear they have understood everything and it is informed consent. I pay tribute to the noble Baroness, Lady Fraser of Craigmaddie, for the intelligent and sensible way she introduced the amendments. I underline that I think everybody in the Committee would be of the view that the two aims are no discrimination and absolute clarity that somebody has agreed. That is the basis upon which I, as a sponsor of the Bill, approach this matter.
I shall deal first with what the current Bill and my amendments make provision for. Clause 5 states:
“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters”.
We take the view that that clause is inadequate because the assurance is not in the communication—by which I mean that you have to ensure there is effective communication, not that you have to ensure there are reasonable adjustments, because who knows whether the reasonable adjustments would work. For that reason, we have tabled Amendment 170 to change the wording in that clause and the parallel clause, Clause 10, to
“take all reasonable steps to ensure that there is effective communication”.
I am sure that is the right way to do it. The focus should be not on ensuring they have to take the steps but on effective communication. I emphasise that because the noble Baroness, Lady Fraser, said those amendments would make it less safe. They would not: they would make it safer. I hope that, having heard what I have to say, the noble Baroness will see that I am trying to achieve what she, quite rightly, is trying to achieve.
The second method by which the noble Baroness rightly seeks to identify how one improves this is ensuring that there is an independent advocate or somebody who has the ability to deal with the communication difficulties of the sort she proposes. That is in her Amendment 546, which would ensure that you are entitled to an independent advocate if you have communication or speech difficulties.
I hope the noble Baroness will be persuaded if she looks at my Amendment 548A, which sets out in detail, by amendment, the circumstances in which an independent advocate has to be made available. I am sorry to go through this at speed, but I have no other options. Who is entitled to an independent advocate? In proposed new subsection (8)(b), it is a person who
“would experience substantial difficulty in … 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 Amendment 546 proposes. I do not invite her to agree or not at the moment, but I very much hope that she looks at that and that she agrees that we are all trying to get to the same end. I completely accept how she framed the issue around people who have the sort of communication differences that she and the noble Lord, Lord Moore of Etchingham, referred to. I am sad not to see him in his place, but no doubt somebody will tell him—he dealt with exactly that sort of issue. So I am with the noble Baroness on this, and I hope she will be satisfied that I have dealt adequately with the position.
On Clause 5, the noble Baroness, Lady Nicholson of Winterbourne, said: make sure that there is an interpreter and, she would add, an amanuensis. I hope she will take the opportunity of looking at my Amendment 548A and see that it would cover people who are deaf. But, again, if she is not satisfied with that, I would be more than happy to meet her—but I hope she will be satisfied with that. That deals with people with communication and hearing difficulties.
I turn to people who are under cultural pressures, religious pressures or pressures from their sexual identity. I completely understand this because I have had the benefit of conversations with the noble Baroness, Lady Nicholson of Winterbourne, who put to me the following example: a woman who is of a religion that would tell you that you would suffer in hell for ever after if you were to have an assisted death, but who is having one because she is being pressured by a man whom she is used to taking orders from, in effect. The question is not whether one makes special provision for that but whether our five layers of safeguard provide protection against that. I believe that having one doctor, a second doctor, the first doctor looking at it again, the panel and the first doctor looking at it again will identify those cases. So I understand what the noble Baroness says and I hope that, with the safeguard provisions that we have put in, we have covered that.
The final group is the one from the noble Baroness, Lady Grey-Thompson. She wants amendments that say that the report the first assessing doctor has to give should be in a language and format that is accessible to the person getting it. I completely agree. The clause makes provision for the Secretary of State to make regulations about all those matters, including that, and I would expect those regulations to deal with that.
Baroness Berridge (Con)
The noble and learned Lord has not covered my point.
Lord Falconer of Thoroton (Lab)
In relation to the point from the noble Baroness, Lady Berridge, that there should be an absolute exclusion on interpreters under 18, she makes the point that in a case involving, for example, a person under 18 who is the child of somebody going through an assisted death, it would be wholly inappropriate for them to have to deal with that. Again, I do not think we should provide for that in the Bill. It should be dealt with by code of practice. I can envisage circumstances in which somebody who is terminally ill and who does not speak English is comfortable only with their 17 year-old child being the interpreter, so I would be not in favour of an absolute exclusion in those circumstances.
Baroness Berridge (Con)
To clarify, is the noble and learned Lord saying that a mandatory exclusion would be in a code of practice? We cannot do that unless it is in the Bill. In relation to the latter point, we will just have to agree to differ on the safeguarding issues in relation to a 17 year-old, but would he be agreeable to 16 being the cut-off and mandatory?
Lord Falconer of Thoroton (Lab)
I am not in favour of a mandatory bar on any young person. I expect it to be dealt with in a code of practice. I agree that unless there is a mandatory provision in the Bill it will not be effective, but I am not in favour of that mandatory ban.
Baroness Fraser of Craigmaddie (Con)
My Lords, I thank everybody who spoke in the debate. I am very conscious that I stand between noble Lords and their lunch, so I will try to sum up quickly. I agree with the noble and learned Lord that we are all trying to ensure the same thing. I am disappointed by his response pointing to his amendments around the right to an independent advocate, because that is only one small part. My Amendment 167 was really about seeking assistance in the preliminary conversation. The reason for that is understanding that, as my noble friend Lord Shinkwin so eloquently said, it is about thinking about the process from the perspective of the person with the communication issues.
Any of us might find ourselves at any moment in our life, through illness, accident or frailty, in this position. Turning the tables and thinking about how we would feel going through this process and the preliminary conversations is really important.
I want to just quickly give examples of why words really matter and why it is not just about independent advocates. We have the next group after lunch on that. In Scotland we had the “right to speak” legislation that went through after the campaigning of Gordon Aikman, and the Scottish Government put in the right for people to access communication aids and support. The problem in practice is that many people have been able to access aids but not the support; that was the essence of my probing.
The noble Baroness, Lady Hollins, mentioned training. Yes, people are trained to support, and independent advocates might be in that camp, but it tends to be very basic. If you consult the Royal College of Speech and Language Therapists, it is extremely concerned about the number of professional people available to support this group of people. Clarity is vital all the way through the process.
I am conscious as time goes on that I cannot mention everybody. The point is that language being either mediated by someone else, culturally shaped or indirect can cause an issue at any point in the process, and therefore we must have support for people with severe communication issues and other issues. I pay tribute to my noble friend Lady 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 not simply a miscommunication.
Baroness Nicholson of Winterbourne (Con)
I add my thanks to the noble and learned Lord, Lord Falconer, for his comments. I look forward immensely to the meeting with him. I also point out that his colleague on the Front Bench stood up and said something about me and, of course, I could not hear it. Hearing is a very difficult thing to ignore. I sincerely hope that the amendments will cover that.
Baroness Grey-Thompson
Baroness Grey-Thompson (CB)
My Lords, in moving Amendment 168, I will speak to a number of amendments in this group. The lunchtime break was very useful in being able to reflect on the discussion of the previous group and think about where the two areas may interact.
Clause 22 of the Bill introduces a new role of independent advocate for people with
“a learning disability, …a mental disorder under section 1 of the Mental Health Act 1983, or … autism”,
or anyone who
“may experience substantial difficulty in understanding the processes or information”
given. My concern with this clause is that it leaves almost all vital detail on independent advocates to regulations set by the Secretary of State.
The Bill sponsor’s new clauses on independent advocates were published on 29 January, and the noble and learned Lord says that these are intended to respond to the comments from the Delegated Powers and Regulatory Reform Committee that the obligation to appoint independent advocates should be on the face of the Bill. Although the new clauses from the noble and learned Lord, Lord Falconer, do put more detail in the Bill, I believe that they weaken the provision of independent advocacy for vulnerable people. The new provisions can be optional or waived, and the advocate need not be present. To have an advocate is simply to instruct one.
I believe that the new clauses fail to address the key parts of the Delegated Powers and Regulatory Reform Committee feedback. The obligation to appoint independent advocates must be on the face of the Bill and must also be scrutinised by Parliament. The subsection that states that regulations may in particular provide for
“obligations on persons performing functions on this Act to ensure the presence of an independent advocate for a qualifying person”
is not replicated in the noble and learned Lord’s new clause.
The noble and learned Lord’s arguments on 13 March are, I believed, contradicted by his amendments. On 13 March, the noble and learned Lord said that independent advocates were a “rock-bottom protection” for the vulnerable, but I believe that the amendments would shift to a system that is more discretionary and, therefore, weaker. They would also put an awful lot of pressure on disabled or vulnerable people—issues that were so powerfully raised by the noble Baroness, Lady Monckton.
My amendment 168 would require that anybody providing a “relevant activity” under the Bill—the new subsection (8) defines relevant activities as including “conducting a preliminary discussion”—must not carry out the relevant activity unless the person seeking assistance has an independent advocate. The amendment would allow a qualifying person to refuse or waive their right to an independent advocate and would permit a preliminary discussion to proceed without one if the patient states that they are content to do so.
Clause 22 of the Bill currently mandates that the Secretary of State must set out obligations. I cannot reiterate enough how many concerns I have about that. We have previously debated the crossover between a terminal condition and somebody who is also disabled. For a vulnerable person, it feels like it is just enough to say that a conversation has been had. I do not think that there is enough depth or protection in what we are looking at here, and there are many unanswered questions.
We have discussed in other areas who will make the appointment, what they will do, what training they will have, and how they will engage with families. Will it be a person? Could it just be a leaflet? How does the noble and learned Lord envisage that this will work in reality? We have debated online discussions. It may be that the person—the advocate—is just there as an online presence.
Relating to the previous group of amendments that we have debated, how will the independent advocate be explained to the individual? This is really important. Will there be flexibility to change the advocate if the person seeking assisted suicide does not get along with them and does not form a connection? I am sure that we will be told that it will be for secondary legislation, but there are important questions such as whether they will be paid. Most positions such as this are subject to minimum wage. How can we also ensure that they are free from bias? I am really concerned about this optionality. If a person does not understand what an independent advocate is, how do they know whether they really need one?
Baroness Coffey (Con)
My Lords, I recognise that the noble and learned Lord, Lord Falconer of Thoroton, has tabled Amendment 548A, which completely leaves out Clause 22. It could be useful to hear from him early in this group, recognising that he has not answered questions on advocates in the past because of the amendment he has tabled.
Lord McCrea of Magherafelt and Cookstown (DUP)
My Lords, I have tabled Amendments 540B and 544A in this group. My intention with these amendments is to probe how we have ended up with the list of eligibility criteria for qualifying for an independent advocate contained in Clause 22(4). These provide that a person may qualify for an independent advocate if they have a mental disorder, including a learning disability, if they are autistic or have a substantial difficulty in understanding or communicating information. Clearly, there are obvious difficulties with an approach which attempts to list certain conditions but not others. Why, for example, is autism explicitly mentioned in the Bill when Down syndrome is not?
I see that the noble and learned Lord, the sponsor, has adjusted his approach to the eligibility criteria in his new Amendment 548A on the subject, presumably to avoid this problem and any unnecessary duplication. The criteria in that amendment centres much more on the “substantial difficulty” test extracted from the Care Act 2014. It would be helpful for the noble and learned Lord, the sponsor, to set out whether he anticipates that this new test will provide for a wider range of people to access an independent advocate. It may also be helpful and useful to get the Minister’s assessment on the same point, and on how that may affect the questions of resourcing and costing set out in the impact assessment. Currently, the impact assessment suggests that 2.5% of people may be eligible for an independent advocate. This figure has been arrived at by
“Estimating the proportion of people with a learning disability, mental disorder, and/or autism”,
though it admits that doing so is “complex”.
Statutory guidance on the use of the same “substantial difficulty” test under the Care Act 2014 seems to suggest that the net could be much wider than just those groups. It states that
“a person who is near the end of their life and appears disengaged from involvement and decision-making”
may be eligible for an independent advocate. That seems to encompass many more people than under this assisted suicide Bill. If the effects of terminal illnesses—of which we have heard a wide range over the last number of weeks, such as depression and fluctuating capacity—are likely to make us eligible for an independent advocate, it seems that the Government’s 2.5% figure is far of the mark. Equally, if I am wrong and the list of people who can access independent advocate support is narrowly defined then this would surely give rise to a human rights challenge under Article 14 of the European Convention on Human Rights, against non-discrimination. I therefore ask the Minister: how have the Government satisfied themselves that no one else will need independent advocate support to engage the provisions of the Bill?
Ultimately, for these reasons and for the ease of administration, we are likely to end up in a position where every applicant is treated as eligible for independent advocate support. After all, anyone with six months to live is deemed to have a disability under the definition in the Equality Act 2010. Given that this is where we could end up, it would be helpful if the Minister could set out exactly what the implications would be, including the resourcing challenges for already overstretched advocacy services. Is the Minister satisfied with the sponsor’s apparent solution to the costing and resourcing problem, which is to make the new advocacy role in Amendment 548A one that people have to opt in to, so that it is no longer mandatory and easily waivable?
I have some sympathy with the position of Dr Sarah Hughes, chief executive of the mental health charity Mind, who told this House’s Select Committee on the Bill:
“I think we would also say that individuals need advocates. While there is a panel and there will be various assessments, the person really does need an independent advocate at every point to be able to understand the information that they are being given, the conversations that they are having and so on”.
She is right to have this concern. We are not talking about a trivial decision, such as buying a cup of coffee; we are talking about a life and death decision, and one that is often dressed up in euphemistic language that can be misleading even to those of us who do not have additional vulnerabilities.
It is vital that people truly understand the nature, gravity and risks of any decision on this matter, but I am seriously concerned that, in practice, that is not where we will end up, particularly if we need enough independent advocates for each applicant. Where will these advocates come from? The Government’s impact assessment hopes that there will be social workers employed by the NHS, but job adverts for independent advocacy often have no training, qualification or experience requirement.
The 2023 review of advocacy found serious deficits in advocacy skill sets. It found that there was
“a lack of basic understanding of autism and learning disabilities”
and
“a lack of practical communication skills, particularly when working with a person who uses non-verbal or augmented communication”.
The same review found:
“Only one third of family carers described the advocate supporting their loved one as ‘skilled and experienced’”.
What assurance do we have that things will be different here? Such training is crucial, particularly considering that we are talking about highly susceptible individuals.
Again, I refer to an example from the evidence presented to the Select Committee. Ken Ross OBE, founding officer of the National Down Syndrome Policy Group, shared his worry at the lack of specific training on Down syndrome for health and education professions. He pointed out that the
“very complex and unique speech and communication profile”
that people with Down syndrome can have makes them “highly suggestible”, particularly to those perceived to be in a “position of authority”. Without training, how would an independent advocate appreciate this and mitigate for it?
Further, how will we ensure that resourcing independent advocates for this purpose does not draw away from the much-needed functions under the Care Act, the Mental Capacity Act or the Mental Health Act? Data suggests that, in some local authorities, fewer than 15% of people get an advocate when they should get one. Clearly, the system is already broken. Are we going to risk breaking it further and take away the little support that is designed to help people to live?
Finally, I am concerned at the risk that advocates become not advocates for the patient but advocates for assisted suicide. No doubt the noble and learned Lord, Lord Falconer, will tell us that this is not at all what happens with independent advocates, but I remind him that in connection to other independent advocacy services, NICE has said that
“non-compliance with legal duties is common”.
In other Acts that establish independent advocacy services, their specific duties and functions are set out in statute—something the sponsor has not done either in the Bill before us or in his new Amendment 548A. Without the detail—such as whether an independent advocate has a duty to help the patient understand non-fatal options—we cannot be sure exactly of the direction that such advocacy would take. Therefore, I believe that my amendments are worthy of consideration.
Lord Falconer of Thoroton (Lab)
My Lords, I will respond to the sensible invitation of the noble Baroness, Lady Coffey, to give a brief indication as to what my amendments here do. The noble Baroness, Lady Finlay of Llandaff, earlier referred to the Delegated Powers Committee, which made a number of criticisms of the previous Clause 22, in particular that it did not specify the circumstances in which it was mandatory to have an independent advocate and that it left too much to regulations. We introduced two new clauses to deal with that.
The first proposed new clause is found in Amendment 548A. It first requires that anybody carrying out a relevant activity under the Act has to consider whether the person seeking an assisted death requires an independent advocate. The person carrying out the relevant activity is broadly either the first doctor, the second doctor, the provider of assistance to the patient or a member of the panel. If the relevant person decides that the person does need an independent advocate, the person performing the activity under the Act must give the person seeking the assistance
“information about representation and support provided by independent advocates, and … an explanation of the effect of subsection (3)”,
which is that if you need support you are entitled to have an independent advocate, but if you do not want the support you can say no to it. Where the person performing the relevant activity is a doctor, as opposed to the panel, they have to tell the commissioner for assisted dying that this person has been given the information about an independent advocate.
The people who qualify for an independent advocate are not everybody applying for an assisted death, only either
“a person with a mental disorder”
or
“a person who (in the absence of support) would experience substantial difficulty in doing one or more of the following … understanding relevant information … retaining that information … using or weighing that information as part of the process of making relevant decisions, or … communicating their views, wishes or feelings (whether by talking, using sign language or any other means)”,
as we discussed previously.
If an independent advocate is engaged, their job is to “represent and support” somebody seeking assistance in
“understanding the options available … as regards end of life care, or … anything done under this Act, by or in relation to”
the patient. The job is to help to understand, not to be an advocate for any particular cause.
In Amendment 549A there is an additional proposed new clause, which is collateral to the new clause, saying:
“The Secretary of State must by regulations make provision about independent advocates”.
Those regulations basically have to specify the training required for independent advocates, identify who gives them instructions in individual cases and make arrangements for who appoints them. So one now has —this is the point that the Delegated Powers Committee was making—clear circumstances for identifying when an independent advocate should be appointed and on whom the duty arises to make sure it happens.
Baroness Hayter of Kentish Town (Lab)
My Lords, following that, I am concerned about whether I have read Amendment 553 in the name of the noble Baroness, Lady Grey-Thompson, correctly. She did say at the end that maybe not all her amendments were perfectly drafted, so I may have misunderstood it.
As I read the amendment—following after the new Clause 22, as my noble and learned friend has just said —it says that any person, not just a qualifying person,
“between age 18 and 25 wishing to receive assistance under the provisions of this Act must receive consent from a parent or guardian and must be accompanied by an independent advocate in addition to parent or guardian”.
I think I am correct in reading that as everybody, not just a qualifying person.
The idea is that someone at the age of 25 still needs a parent or guardian—if they even know where their parents are. Maybe it is partly because I was brought up in the forces, but I know of people who have taken major life and death decisions by the age of 25 while in charge of military units at war. I have known people—in fact, I see some around the Committee—who by the age of 25 have given birth to children, which seems to me an enormous decision that one takes. I, well below that age, took a decision that meant I would never have children. I know of surgeons who before the age of 25 have taken decisions of a life and death magnitude in surgery. There will be people now sitting on the Bishops’ Benches who will know of circumstances in which big decisions are taken by people well below that age.
I am really surprised that we would be writing this into the Bill for those people. Suddenly, at the point when they are terminally ill and dying, we say that, up to the age of 25, they have to locate a parent—whom they may not have seen for years—and, in addition to the parent, have to have an advocate with them. I find that extraordinarily devaluing of ordinary human life and the ability to take decisions.
As I say, I could have misunderstood the amendment. The noble Baroness, Lady Grey-Thompson, said that she may not have drafted it correctly, so it may be that this should apply only 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.
Baroness Cass (CB)
My Lords, I will speak to a number of amendments in this group. I can be briefer on some because the noble and learned Lord, Lord Falconer, has copied some of my homework and taken it as his own—which I take to be a good thing.
Baroness Cass (CB)
Not at all. When I first saw the term “independent advocates” in the Bill, I worried because, in my clinical career as a neurodisability consultant, I have had some very negative experiences of advocates who allegedly were speaking on behalf of people with a range of disabilities but who, we were fairly clear, were not accurately doing so. Some of their behaviours were, frankly, coercive. I know that my noble friend Lady Hollins will have similar experiences and stories to tell.
“Advocate” means different things to different people. Under the Mental Capacity Act, the role is to support people to have capacity, often in the context of the need to make decisions on life-saving treatments. That is clearly not what we are talking about here.
My amendment to Clause 22(4)(b)—which might now be academic, as the clause is to disappear—tries to frame it as people having difficulty accessing information about decisions they need to make for the purposes of requesting assistance and communicating relevant matters. It narrows it down to a communication problem, in the widest sense of the word.
I am slightly concerned that Amendment 548A, from the noble and learned Lord, Lord Falconer, includes “retaining that information” and
“using or weighing that information”
as part of the process. It is very hard, if someone is not retaining information, for anyone to help them to do so; people who are suffering from dementia or memory loss would otherwise be able to be facilitated to remember things, which they cannot possibly be. If somebody does not have capacity, it is hard to see how an independent advocate can facilitate them to have that. That is certainly not what we want them to do, so I am slightly concerned about that line in the new clause.
As for what that independent advocate should do, the noble and learned Lord, Lord Falconer, 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 their communication needs would otherwise impede such participation. It is about acting to support communication—both understanding and communicating—but not deciding, representing or driving a particular view.
The noble Lord, Lord Sandhurst, who is not able to be here today, and I have put our names to an amendment that seeks that the independent advocate should not be a relative, carer or someone with professional responsibility, for obvious reasons, because, de facto, the individual should be independent and should have had training. Within that training, it is important that they are able to recognise coercion, domestic violence and many of the other issues that we have recurrently discussed in this Committee.
In summary, certainly, my amendments on the role of the independent advocate are subsumed in the new replacement for Clause 22. However, I still have some concerns about who qualifies.
Lord Weir of Ballyholme (DUP)
My Lords, I will speak to my Amendment 553B. It is one of a range of amendments I have tabled, which have been put into a number of groups, to try to deal with some of the concerns that have been raised by disabled people and to provide high levels of safeguards. The amendment overlaps with other amendments in this group, as a lot of us are coming from a similar position, irrespective of our broader attitudes towards the Bill as a whole. As such, I am not suggesting that my amendment would cover all aspects.
There is reference in this amendment to one area that we need to get our heads around: how the independent advocate is selected and from where they can be drawn. In the interest of time, I will restrict my remarks purely to my amendment and let others make the case for theirs. My amendment would ensure that there is the availability of an independent disability advocate with “appropriate expertise”—that is as close as I was able to get to defining this—which must be provided by the commissioner for any disabled person within the definition of Section 6 of the Equality Act 2010.
Lord Falconer of Thoroton (Lab)
Could the noble Lord indicate which amendment he is talking to?
Lord Weir of Ballyholme (DUP)
It is Amendment 553B.
As part of that, the commissioner should offer a reasonable opportunity for the person to consult the advocate before a decision is made. Flowing from that, there would then be recorded written reasons for whether that meeting has taken place, whether the offer has been taken up and, arising from that, whether any concerns have arisen from that contact.
The point is that those who qualify for this advocate should be disabled, and it should not be a question of a commissioner simply picking and choosing who they feel falls into that category. Even advocates of the Bill would say that this is based upon the idea of autonomy, and autonomy is very much at the heart of this amendment. There must be the opportunity for a disabled person to say that they want to meet or have an advocate. It is a matter of choice for them. Therefore, it would not be forced upon anyone, but the availability of it would be guaranteed.
This is important, because we know that an independent advocate can do a number of things. Mention has been made already of the dangers for people with communication difficulties. If we are dealing with a sensitive subject, getting the communication wrong can be critical. For many disabled people, there can be issues around misunderstanding. It is important that we have a situation in which people realise that there are other options, and to have that independent advocate is critical. It can provide a safeguard, because those discussions can be, to a degree, a fail-safe to try to detect whether any level of coercion has taken place. That is explicitly mentioned in the amendment.
This is a position endorsed by the UN Committee on the Rights of Persons with Disabilities. The committee has spoken of the fact that, in navigating a high-stakes situation for a disabled person—deciding whether or not a life should end is about as high-stakes as you can get—where there are complex legal and medical processes, no matter how much there are attempts to try to insulate those, if there is the denial of support to that person then that can lead to a form of discrimination against them and leave them vulnerable. Similarly, the Equality and Human Rights Commission has indicated that, for disabled people, where there is an opportunity for that additional level of support, it can be deeply empowering to the individual.
The case for an independent advocate is one which I hope the Committee will endorse strongly, because it is a very major concern of disabled groups. Demos has done a number of focus groups among disabled people. One of the concerns that keeps coming back is a worry not simply about coercion itself but that family or the medical experts dealing with this will put forward assisted death as simply being the sensible option and so will be advocating for that. To have someone who is completely independent, and who does not have any particular views or an axe to grind, but who is there to simply talk through the issues with the disabled person, is critical.
In conclusion, this is part of a wider concern. This amendment has been drafted by disabled people. One of the issues, and a frustration among many disabled people out there, is that this Bill is being done to them, not with them. As such, while we in this Committee try to channel those voices, there is at times a danger that we take away those voices. It is important with this amendment, and many other amendments that are motivated by disabled groups and disabled people themselves, that we do not turn a deaf ear to their concerns. We should listen to the concerns that are there and act on that basis.
Baroness O’Loan (CB)
I have put my name to Amendments 300, 538 to 540, 541 to 543 and 544B in this group because of the importance of independent advocates and the definition of who they may—or should—be made available to. As has already been alluded to, the fact that the Bill provides for somebody with a disability is compounded by the fact that people with a learning disability in particular can want to please those whom they perceive to be in authority over or looking after them. They can think that people will act in their best interests, and they will very often comply with what is proposed to them. That is one of the things that make this issue profoundly important. What is so lacking in Clause 22 is the specificity that would enable one to articulate what an independent advocate is. In a minute, I will come to the amendments proposing a new Clause 22.
Amendment 300, tabled by the noble Baroness, Lady Grey-Thompson, proposes a new clause requiring the appointment of special independent advocates for disabled people as defined by the Equality Act. That is a wider definition of those for whom independent advocates should be provided. However, it recognises that, in those moments of considering a choice between life and death, a person needs to be cared for, so that the stresses that they will inevitably experience do not prevent them making an informed decision under the Bill. It is very important for such advocates to be trained specifically in disability rights and the identification of coercion. Amendment 300 is specific in identifying the range of support and advice that must be made available. Amendment 539 similarly requires specific communication training, which is essential for someone to act for a person with a profound disability, as we heard in an earlier group today.
Amendment 541 in the name of the noble Lord, Lord Sandhurst, specifies conflicts of interest that would preclude someone from acting as an independent advocate, and I agree that it is important that these be spelled out in the Bill.
Amendment 542 states what the independent advocate cannot do. In particular, they should not be there to support a person to have capacity to end their own life; nor should they advocate for someone, as under the MCA arrangements. Rather, they should ensure that the person seeking to end their own life understands what is being offered to them and understands the consequences of complying with the suggestions, thereby enabling them to respond to the options made available to them.
Amendment 548 seeks to amend Clause 22(4)(b) by making more specific the difficulties that may be faced by a qualifying person.
In responding to the DPRRC report, the noble and learned Lord, Lord Falconer, has tabled the amendments to which he has already spoken. However, I have concerns. The changes proposed by the noble and learned Lord no longer provide an obligation on persons performing functions under the Act to ensure the presence of an independent advocate for a qualifying person. Subsection (9) of the proposed new clause in Amendment 548A says that someone
“‘has’ an independent advocate if an independent advocate is instructed to represent and support them”—
it is not that they need to be present or involved; they merely have to be instructed.
At this point, it is important to remember why the independent advocate is there in the first place: to provide support to someone who has difficulty understanding and who may very quickly forget, after the conversation, anything that has been said to them. That is why the independent advocate must be present. Can the noble and learned Lord tell us why he removed that requirement? Does he think that an independent advocate could support someone if they are not present for the discussions and consultations?
More chillingly, subsection (3)(c) of the proposed new clause in Amendment 548A says that a “preliminary discussion” can proceed even where
“the person seeking assistance informs the relevant person that they are content for the preliminary discussion to be conducted without them having an independent advocate”.
It is not difficult to imagine a situation in which a registered medical practitioner asks, “Are you happy to go ahead without an independent advocate?”, and the qualifying person, possibly wanting not to annoy or even to please, says yes—and so the preliminary discussion goes ahead.
Subsection (3)(b) of the proposed new clause provides that the disabled person can say that they do not want an advocate, but how can we be sure that the person understands what an independent advocate is—we are having quite a discussion ourselves this afternoon about that—and what they might bring to them? Is it possible that a tendency towards needing privacy, and perhaps a tendency to not engage with strangers, might lead someone in this situation to decline an independent advocate without really knowing what they are doing? It would be helpful if the noble and learned Lord could explain how he intends to prevent this happening or to safeguard the person.
It would, of course, save quite a lot of money if the IA were declined. The noble Baroness, Lady Grey-Thompson, has referred to the £2,333 per case. I have a notion that it might be more, because some of these assisted dying cases are going to take quite a long time as they go through all the processes, particularly the process in the house, the hospital or wherever it is that the lethal drugs are to be administered. Assisted dying could take some time. If a disabled person says they do not want an independent advocate, things could move more quickly. There is significant risk here and the noble and learned Lord needs to help us understand the safeguards.
Subsection (8) of the proposed new clause provides a really important definition of an independent advocate, by saying that it is someone who represents and supports a qualifying person
“in connection with … anything done under this Act, by or in relation to the qualifying person”.
My questions for the noble and learned Lord are: what support is envisaged here and what is meant by that phrase? What support is the independent advocate going to provide when the doctor is providing the lethal drug under Clause 25(8)(b)? Is it assisting the person to ingest or otherwise self-administer the lethal drug? What is “support” in this context and that place? Is it possible that the person seeking to die might expect their independent advocate to hold the cup for them or press the syringe with them? Is the clause clear that support cannot include any active role? That would be vital.
Surely this could open the door to an interpretation by those who perhaps have malign intent—I am thinking about coercion here—that the independent advocate can do more than listen, explain and communicate. I wonder what is meant by Clause 25(8)(b) in any event. How far can the doctor go in helping the
“person to ingest or otherwise self-administer”
a lethal drug? We will get to that later, but what does it actually mean?
There is a massive difference between helping with communication and support and being present when someone takes lethal drugs to end their own life, or is assisted to do so by a doctor, and supporting that process. Amendment 549A does not add the kind of clarity required, but it does allow the independent advocate to access the person’s medical records or require information from those records. That seems to suggest that this independent advocate would require some kind of medical expertise, which has not been previously suggested. I do not know what the actual purpose of subsection (3)(d) of the proposed new clause in Amendment 549A is. It would be helpful if the noble and learned Lord could explain it to me.
There is a massive danger inherent in the terribly loose drafting of both Clause 22 and the noble and learned Lord’s proposed new clause in Amendment 548A, and some of the additional material contained in Amendment 549A. Can the noble and learned Lord explain why he has drafted an amended clause which seems even more deficient than the original Clause 22? Needless to say, I also support Amendment 549C, in the name of the noble Baroness, Lady Coffey, which would apply if Amendment 549A were passed.
Baroness Hollins (CB)
My Lords, as the noble Baroness, Lady Browning, is not in her place, she has asked me to introduce her Amendment 538, to which I added my name. It simply says that it would require the Secretary of State to consult
“disability rights organisations and the Equality and Human Rights Commission”
before making regulations.
The Bill is noticeably silent on the actual elements of the role of the independent advocate and allows the Secretary of State to detail what they should do—or not, as the case may be. This feels like a bit of a gap. Several disability organisations have raised real concerns about the Bill and have complained about a lack of meaningful engagement, despite their probably being most at risk if things did not work out quite as the noble and learned Lord the sponsor hoped. This is why they should be consulted when regulations are made; it makes sense.
Lord Gove (Con)
My Lords, I am introducing six amendments in the name of my noble friend Lord Frost. My noble friend sends his apologies to your Lordships’ House. He is unavoidably detained but hopes to join us during the debate before 6 pm. In his absence, given that these specific amendments relate to the role of neutral advisers and are bracketed along with the debate on independent advocates, I am taking his place.
The role of neutral advisers is different from the role of independent advocates, and it is important to draw that distinction. So far, we have been discussing the provision that independent advocates can make to ensure that those living with a series of conditions that may impair their ability to be full participants in the process of deciding on their fate are assisted along the way. It is to the credit of the noble and learned Lord, Lord Falconer, that he has listened to the concerns that have been expressed and has put forward his own amendments, which are there to ensure that people living with disabilities or other conditions can have the support that is believed necessary at that stage in the process. A number of concerns have been expressed by noble Lords about whether the amendment from the noble and learned Lord meets the requirements that have been expressed, but nobody can be in any doubt that he is sincere in his desire to meet those concerns.
Neutral advisers relate to a separate part of the process. They relate to Clause 5(6), which states:
“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3)”—
that is 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 academic expertise and who is bound by the ethical codes of medical practitioners. Quite understandably, there will be many medical practitioners who will not wish in conscience to fulfil that function. We know that, as it happens, not a single royal college endorses the Bill—some are studiedly neutral—but it is undoubtedly the case that there is, at the very least, a substantial minority of medical professionals who do not wish to discharge that function.
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. 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. “Refer” was taken out, not because it was a minor quibble on the part of those who objected to the word but because representative medical organisations, including the GMC and others, said that it is quite wrong to talk about referring. A GP refers you to a consultant when it is in the GP’s view that your medical and health interests are best served by another medical professional. Direction is something else; it is a less authoritative and less safe process. That is why the word is there. In his amendments, the noble Lord, Lord Frost, seeks simply to ensure that those to whom the patients or petitioners are directed are individuals who have the authority, neutrality and detachment to offer unbiased and authoritative advice.
It is important that they have not only that expertise but that independence, because a number of the amendments that my noble friend Lord Frost has laid down are there specifically to chart the operation of those providing that advice and to ensure that there is a proper log or register of their operation and the advice given because, as he has pointed out at other times, if we look at other jurisdictions, we can see that sometimes there are some doctors and some figures who become, as it were, the most energetic, determined, implacable advocates of assisted dying and the most generous providers of that service. One of the concerns of my noble friend, which I share, is that some of those to whom individuals are directed will be ideologically committed to a particular end, rather than those governed first and foremost by patient care.
There may be appropriate ways in which those who are in receipt of direction can be held to a high ethical code, be required to be independent and be mandated to have certain expertise, but the Bill is silent on what the qualifications or the monitoring mechanism would be. On a previous occasion, I asked the noble and learned Lord whether the provision in the Bill for regulations would allow the future creation of a national assisted death planning or advisory service. The noble and learned Lord said that they might, but that he did not envisage that. 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 or support the provision of advice”, 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 that is not in the patient’s interest. I would be fascinated to know the noble and learned Lord’s view of the amendments tabled by my noble friend Lord Frost. I know that he will respond with appropriate consideration.
Baroness Lawlor (Con)
My Lords, I would like to follow my noble friend Lord Gove’s able introduction of the series of amendments in the name of the noble Lord, Lord Frost, and add a few words about why they are particularly important, giving a little more detail on some of the individual amendments to supplement that given by my noble friend. The amendments from the noble Lord, Lord Frost, hang on there being a neutral adviser to whom a person is directed if the general practitioner, the medical practitioner in the Bill, does not feel willing or able to discuss assisted dying with them.
The amendments would ensure that the information was provided by someone neutral. Under Amendment 195, they must keep and report a record of the advice or information given, and the date, to the commissioner within five days; and under Amendment 196, they must be an organisation designated as such by the Secretary of State, by regulation, in consultation with the commissioner. They must also be required to make a declaration, as we have heard, that they have no potential conflict of interest as an organisation by virtue of either employing people or having volunteers on the books who have in some way or another been associated with promoting assisted dying—I am glad to see the noble Lord, Lord Frost, here; I stand ready to be corrected by the teacher—for instance, if the organisation supports assisted dying in principle, if it does so politically or ideologically, or if it does so by means of advocacy or employment, or in any way makes money from it. We can think of lobbyists and PR firms who are acting for such organisations.
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. As it is, the Bill stands open to an ever-expanding bureaucracy. Bureaucracy itself is 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 suffering from a terminal illness, and perhaps to plant the idea. However, if the GP does not want to enter into discussion of an assisted suicide, the Bill opens the prospect of the patient being referred to someone who will.
The amendments of the noble Lord, Lord Frost, would ensure that, if the Bill becomes law, assisted suicide in the UK does not become a state dying service, as has happened, as some feared, in Canada, including many physicians over there. In some cases, medically assisted dying becomes the default option, with nearly one in 20 deaths now resulting from assisted dying, and 5% opting for this step because of direct pressure from medical professionals—as is well documented, and we have spoken about some of these cases in Committee—or because of indirect pressure such as a lack of housing, of the support needed at home, of financial support or of palliative care. These amendments would ensure that in this country, the person to whom a patient was directed, when a doctor does not want to discuss the issue with them, was neutral and did not have an interest in promoting assisted dying.
Lord Brooke of Alverthorpe (Lab)
My intervention will be brief and is addressed to the noble and learned Lord. Does he believe that his amendments will ever be adopted and incorporated into a piece of legislation that will be passed in this Session? If in fact, as we read in many newspapers and in other media, it is unlikely to be adopted, I therefore address a question to my noble friend the Minister: why are we permitting more time to be given to a pointless exercise, when the country can ill afford to be spending money on pursuing legislation that will never be implemented?
Lord Goodman of Wycombe (Con)
My Lords, I have four amendments in this group. Two of them cover ground already explored by other noble Lords, so I will not go over that ground again. We will simply address two of them, Amendments 540A and 862C. I will deal with the latter amendment first. Amendment 862C relates in subject matter to Amendment 459A, which the noble and learned Lord, Lord Falconer, described to noble Lords a few moments ago, and which he tabled in response to the concerns of the Delegated Powers Committee. As others have said, that is very welcome. My amendment seeks to ensure that the regulation-making power in Clause 22 is subject to the affirmative resolution procedure. After all, that is a more exacting procedure, and I would have thought it was appropriate. If the noble and learned Lord thinks it is not, perhaps he would like to explain why when he responds to this debate.
Amendment 540A concerns a matter raised earlier in the debate by the noble Baroness, Lady Cass: training. The impact assessment refers to training for healthcare professionals and sets out three levels: tiers 1, 2 and 3. Tier 1 is
“a 90-minute e-learning module and a 60-minute online interactive session with a facilitator”.
That is the lowest level, and then there is tier 2. Tier 3 is
“an advanced two-day in-person training package, aimed at staff who are likely to lead the VAD service and act as the coordinating doctor”.
I would be grateful if the noble and learned Lord could answer this when he responds: given the 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 3 training set out in the impact assessment be appropriate? If it is not, what other training does he think might be appropriate?
Baroness Coffey (Con)
My Lords, I am grateful to the noble and learned Lord for setting out his new Amendments 548A and 549A, recognising and being positive about the feedback on trying to put something somewhat more detailed in the Bill. I tabled Amendment 549B because aspects of Amendment 549A were starting to worry me. I appreciate that I might be in a different place to many noble Lords on this issue, but I fear that we might start to overcomplicate what is needed in the role of an independent advocate.
One reason I put my amendment in is that, if you can do more than 10 a year, I am somewhat worried that this will become almost a new industry, with people undertaking roles solely on this. I am concerned about training and regulation, and I am conscious that the whole purpose of this was to address people’s concerns. The conditions set out the reasons why somebody may have an independent advocate, which happens in general life but was intended to be somewhat of a safeguard for a person applying and going to see the doctor face to face—although we have previously discussed issues to do with being face to face. But I fear that we might be somewhat complicating what the role of the independent advocate will start to become. So my amendment to Amendment 549A, Amendment 549B, seeks to get a sense of what this role really is and who will fulfil it.
Amendment 549C is pretty straightforward. I do not think there was anything ill intentioned here, but the Table Office said that it did not catch the fact that, when one clause that had a provision for regulations to undergo a resolution in each House of Parliament was removed, this simply got missed out in the new amendment. I am sure that the noble and learned Lord will want to make sure that any regulations are considered by Parliament during any future legislation.
Lord Blencathra (Con)
My Lords, I had an amendment in this group but I withdrew it when I saw that other noble Lords had tabled an amendment that was superior to mine. So I rise to support some of their amendments and to express my concern about the new clauses proposed by the noble and learned Lord, Lord Falconer. I agree with my noble friend Lord Gove that, with a sense of decency and integrity, the noble and learned Lord has sought to bring forward a new clause that is superior to the old one. Nevertheless, I feel it falls short of what is required to protect the most vulnerable people who need assisted dying.
The new clause presents the independent advocate as a safeguard: a final protective layer for those who may be isolated, frail or at risk of coercion. But, when one examines the detail and listens to the evidence from those who work daily with vulnerable adults, it becomes clear that these clauses are a bit inadequate and underpowered, and I feel that they are structurally incapable of doing the job that Parliament has been told they will do.
The first fundamental question concerns the advocate envisaged in these clauses not being genuinely independent. The Bill allows the advocate to be appointed by the very system that is processing the assisted dying application. That is not independence; it is administrative proximity dressed up as protection. Those who work in safeguarding repeatedly warn that advocates must be structurally separate from the decision-making machinery, yet these clauses allow the advocate to be embedded within it. As one commentator put it, this risks creating a supportive facilitator, not a safeguard. Another warned that the advocate would become a procedural escort through the system, rather than a defender of the person’s rights. If the advocate’s role is to challenge, to probe, to question and to stand up for the person when others may be steering them, they cannot be beholden to the very bodies they may need to challenge.
The second problem is that the advocate is given no meaningful powers. They cannot pause the process, require further assessment or insist on a specialist review. They cannot demand that coercion concerns be investigated. They cannot even require that their own concerns be acted on. An advocate without powers is a spectator and not a safeguard. The role has been described as a box-ticking presence—someone who can be noted in the file but whose objections can be politely ignored. If the advocate cannot intervene when something is wrong, the safeguard is a fiction. It is a comfort blanket for legislators, not a protection for the vulnerable.
The third flaw is timing. Under the clauses tabled by the noble and learned Lord, Lord Falconer, the advocate appears after the key clinical assessments have been completed—after the capacity determination, after the voluntariness assessment and after the eligibility decision. By the time the advocate arrives, the train has already left the station. How can it be a safeguard when it is applied at the end of the process, when the opportunity to identify coercion or impaired capacity has largely passed? This is a final courtesy call, not a protective intervention. If the advocate is to protect the vulnerable, they must be involved before the decisive assessments, not after them.
There is 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 specialist put it starkly: “If you do not meet the person, you are not an advocate, you are merely a reviewer of documents”. This is not a safeguard. It is an administrative gesture.
Also, the advocate may not be trained for the complexity of assisted dying, which raises questions about competence. Advocates in other statutory regimes, such as the Mental Capacity Act or the Care Act, receive training for those specific frameworks. Yet these clauses from the noble and learned Lord, Lord Falconer, 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 the highest level of safeguarding skill, not a generic advocate with a generic toolkit”. If the advocate is to stand between a vulnerable person and an irreversible act, they must be equipped for that task.
Finally, there is a danger that advocates can be used unintentionally to legitimise decisions made under systemic pressure. We all know the pressures: care home bed shortages; hospital discharge targets; workforce gaps; social care rationing; family exhaustion; and the subtle but real pressure not to be a burden on people. One expert warned that an advocate without power risks becoming “a witness to system pressure, not a counterweight to it”. If the advocate cannot challenge the system, the system will use the advocate to validate its decisions. That is the opposite of safeguarding.
I pay tribute to the noble and learned Lord, Lord Falconer. His clauses are well-intentioned. He has sought to deliver on what the Delegated Powers Committee said but, as I have said, the clauses are structurally inadequate. They create the appearance of protection without the substance. They offer the language of safeguarding without the mechanics, thus giving Parliament false reassurance while 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—the safeguards must be real, not rhetorical.
Baroness Finlay of Llandaff (CB)
My Lords, this is a very interesting group of amendments, because it seems to me that two separate things are going on. We have the neutral adviser of the noble Lord, Lord Frost, who, unfortunately, arrived too late to be able to speak to his own amendments—though they have been spoken to—and the other is the independent advocates. I share some of the concerns about the amendments tabled by my noble friend Lady Grey-Thompson, but I also have some about the amendments that the noble and learned Lord, the Bill’s sponsor, has already spoken to, whereas those proposed by the noble Lord, Lord Goodman, certainly seem to fulfil an important role and have a narrower scope.
If I might talk briefly about the neutral advisers, that role seems compatible with the scheme that I outlined last week at the beginning of proceedings. Those amendments have been very well introduced, particularly by the noble Lord, Lord Gove, who spoke about that role and the importance of neutral advice.
I turn to the independent advocates. The intention is obviously that disabled people and those with learning difficulties are supported through a very challenging process and time in their life. However, there is a risk that these independent advocates become enablers who function a little like the sweepers in curling: sweeping away blocks and smoothing people’s passage towards an assisted death. The advocates must be advocates for the patients, not advocates for assisted suicide. Given the way that the amendments are written by the noble and learned Lord, Lord Falconer, I fear that the advocates’ behaviour could be influential, as opposed to independent, because the role does not appear to be independent of the wider voluntary assisted dying service. If I have understood correctly, they would be managerially and professionally answerable to the service, but I may have misunderstood that. The way that they are appointed, who they are answerable to and who employs them is important. It would therefore be very helpful if that could be clarified.
There certainly seems to be a gap that the proposals are designed to fill; they are in response in the reply that the noble and learned Lord gave to the Delegated Powers and Regulatory Reform Committee in paragraphs 13 to 18 of the report. He certainly tried to address the issues raised and we have now seen these amendments. Perhaps the noble and learned Lord, Lord Falconer, can clarify whether the role that he drew on was based on the role of independent mental capacity advocates, but with their role extended because having capacity is obviously an essential qualifying criterion under this Bill. The independent mental capacity advocates also have a safeguarding role, which is very important. Conversely, the independent mental health advocates, who were created through the Mental Health Act, act for individuals detained under mental health legislation, regardless of their capacity.
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 how mental capacity is assessed. Given the difficulties of capacity assessment and the current Clause 3, which I have previously argued is unsatisfactory, it seems important that these people fulfil the role adequately and should have a specified minimum training in end-of-life law, disability rights, expertise in capacity assessment itself, coercion detection, palliative care and ethics.
In the other place, the Minister raised issues that need to be resolved and I ask the noble and learned Lord, Lord Falconer, 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? Is the advocate entitled to be, or do they have to be, present in the room during all discussions? How will a person be determined to be a “qualifying person” as the definition seems quite broad and to encompass a wide range of people with varying support and advocacy needs? Who will pay the advocates and how will they be funded? 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?
We are here to make this legislation safer. While the Bill is before Parliament, it would seem irresponsible to leave such lacunae open or completely unplugged. There is the same concern over regulations being left to an unknown Secretary of State in the future.
Lord Jackson of Peterborough (Con)
My Lords, I shall touch briefly on two points prompted by both the noble Baroness, Lady Finlay of Llandaff, and my noble friend Lord Blencathra. In a sense they are a challenge to the sponsor, the noble and learned Lord. I think I am right in saying that he was a lot more definitive in his language in the Committee proceedings last week on 13 March about the need for the independent advocate to be present during discussions with the individual seeking to access the service. His Amendment 549A is more opaque in its language and does not specify that. Given the discussions that we had, particularly last week, about the power imbalance between someone who is less confident, less well-educated—a power imbalance between the decision-maker and the person accessing the service—it is an imperative that the independent advocate attends and is present to challenge some of the assumptions or decisions that are being made.
I want also to consolidate a point raised by my noble friend about training. The noble and learned Lord will know, as he and others have lauded the system in Victoria, Australia, that the training provided around the specific issue of coercion is very limited at tier 1. He has potentially missed an opportunity to focus in on training. If you had an in-person independent advocate and poor training, that would not be great, but you would at least have someone attending. Instead, you have a situation of inadequate training and someone not attending in person. It may be that they can send an email, or do a report, or a telephone call, but that is not the same as being there advocating for that individual.
I invite the noble and learned Lord, the sponsor, to address those specific issues of the opacity of his new amendment. I accept that it has been offered to the Committee in good faith to address some of the concerns and issues raised previously, but there is a specific issue about the wording of his new Amendment 549A and a specific issue of training around coercion, which is very important in this respect.
Lord Wolfson of Tredegar (Con)
My Lords, we have focused in this debate on the role of the independent advocate, but of course many of the underlying concerns arise with regard to protections for various vulnerable groups and people in situations that expose them to coercion or abuse. It is clear that the text of the Bill as drafted does not specifically address protections for groups such as those with Down syndrome or those subject to coercion.
In fairness to the noble and learned Lord, Lord Falconer of Thoroton, he could reasonably argue that the drafting of the Bill should be wide enough to encompass all of these groups on a generic basis without specifically referencing them. If the Bill is drafted with too much specificity, almost certainly somebody will be left out and we would have to come back at a later stage. That is presumably why the noble and learned Lord has introduced his regulation-making power in Amendment 549A, which I will come back to in a moment.
That said, I would suggest that it is not enough just to say that the drafting of the Bill is broad and that, therefore, we cannot debate its impact on specific vulnerable groups. I would be interested if the Minister could take time in her response to set out how the Government have taken into account the specific needs of the groups mentioned in the various amendments. That seems to me to be part of the work to deal with the practicalities of implementing the Bill.
How, for example, in practice does a person with Down syndrome who might have both speech and hearing difficulties communicate that they wish to die? How will medical practitioners and independent advocates assess that that person has come to an informed choice that they wish to die? Assessing the true wishes of people in that situation can be exceptionally challenging, and many such people rely on loved ones or carers to interact between themselves and medical professionals. How, therefore, do these family members or carers fit into the architecture of the Bill? How do they fit in, for example, with the independent advocate? What is the relationship between family members, carers and the independent advocate within the system of the Bill? Those are general questions which I hope the Minister will be able to respond to.
There is one specific point I ask the noble and learned Lord to consider which arises from his Amendment 549A, which would introduce a new clause after Clause 22. This point was prompted by a comment made by the noble Baroness, Lady O’Loan. If one looks at subsection (2)(b), the regulations must
“require a specified person to instruct an independent advocate to represent and support a person”
if the section applies. In subsection (2)(b)(ii), it says that it applies if
“the person has not indicated that they do not want an independent advocate”.
I was just comparing that to Clause 20 of the substantive Bill, which deals with the situation of when a person who has made either a first or second declaration wants to cancel the declaration as they have decided they do not want to die. In those situations, the person
“may cancel it by giving oral or written notice of the cancellation (or otherwise indicating their decision to cancel in a manner of communication known to be used by the person)”.
On the face of it, therefore, we are requiring much more from a person—oral or written notice—to cancel if they do not want to die than what is needed if they do not want an independent advocate. If we are going to go down the route of Amendment 549A, instead of saying the person has not indicated they do not want an independent advocate, it really should be that the person has confirmed—by written notice or by some sort of firm confirmation—that they do not want an independent advocate. What does “indicated” mean? It is a very loose word and, I would suggest, a very light test. What is happening here is that a person who would otherwise have an independent advocate to protect them is now not getting one; if that person is not going to get one, then we need more than a mere indication from them that they do not want the protection because, ultimately, this is all about protecting people. The contrast with Clause 20 seems to be somewhat stark, so I look forward to the noble and learned Lord’s response.
Baroness Watkins of Tavistock (CB)
I just wanted to stress, particularly for Hansard, that the people we are talking about are ultimately going to die from the illness they have had. Therefore, when the noble Lord has referred to them not wanting to die, he means that they do not want an assisted death.
Lord Wolfson of Tredegar (Con)
We all know what we are talking about here, but yes, absolutely.
This all goes back to the fundamental point of the Bill. I am addressing this point because the hypothesis is that the person has less than six months to live but, notwithstanding that, we are making sure that this particular group of people have an independent advocate. My point is simply that, if we are going to go down this road, there needs to be consistency: if they are not going to have an independent advocate, they really need to confirm it rather than merely indicate it. I apologise for my slightly loose language; the noble Baroness was quite right to pick me up on that. I hope the noble and learned Lord will consider my point as to whether “indicating” is actually the right test in subsection (2)(b)(ii) of his proposed new clause.
Baroness Merron (Lab)
I am most grateful to noble Lords for their contributions to this debate on independent advocates. I will limit my comments to those amendments on which the Government have major legal, technical or operational workability concerns.
I turn first to Amendments 168, 300 and 553, tabled by the noble Baroness, Lady Grey-Thompson. Without further consequential changes, Amendment 168 would result in an internal inconsistency with the framework currently set out in the Bill, which provides an independent advocate only for certain qualifying persons.
Similar concerns arise with Amendment 300, which seeks to establish a new system of advocates for disabled people. It is important to note—not just in reference to these amendments, which I heard the noble Baroness acknowledge are not quite as she might wish them to be, but in relation to the debate—that the Equality Act 2010 definition of disability is very broad. For example, it includes those with cancer. As a result, most people who are terminally ill for the purposes of the Bill would fall within that definition. That means that the amendment could apply to the majority of those seeking an assisted death.
Amendment 300 would require the independent advocate to confirm that the person has been offered
“all practicable social, medical, and palliative supports which are financially supported”.
However, there is no provision to ensure that the independent advocate would have access to the information needed to confirm this, which could make the amendment unworkable.
Amendment 553 relates to young adults aged 18 to 25. People in this cohort are legally adults, so the requirement for parental or guardian consent and to have an independent advocate may raise Article 8 ECHR issues relating to private and family life. To be lawful, these requirements would need to be objectively and reasonably justified and proportionate.
My noble and learned friend Lord Falconer, the sponsor, tabled Amendments 548A, 549A and 862A to address workability issues with the current drafting of the Bill by clarifying the regulation-making powers and parliamentary procedures in Clause 22. The amendments set out when a qualifying person must be informed about independent advocate support and the circumstances in which that support must be provided.
Amendment 544A, tabled by the noble Lord, Lord McCrea, would create a conflict with Clause 22(3), which sets out the role of the independent advocate in providing support and advocacy to a qualifying person. The amendment would remove the definition of “qualifying person”, which would result in confusion about who is a qualifying person and the role of an independent advocate appointed to assist a person who is not a qualifying person.
Amendment 553B, tabled by the noble Lord, Lord Weir, would place a duty on the commissioner to offer the support of an “independent disability advocate” to a disabled person as defined under Section 6 of the Equality Act 2010. As mentioned previously, given the breadth of the Equality Act definition, this duty would apply to most people seeking an assisted death. The amendment is unclear about the duties, training and qualifications that would be required of them.
Amendments 191 and 195 to 199, tabled by the noble Lord, Lord Frost, and spoken to by the noble Lord, Lord Gove, and the noble Baroness, Lady Lawlor, would require the Secretary of State to establish a scheme of neutral advisers to whom a person must be directed in the situation where a registered medical practitioner is unwilling or unable to conduct a preliminary discussion. The amendments are broad, ambiguously drafted and could give rise to significant workability issues.
Amendment 196 in particular would require neutral adviser organisations to make a number of very broad declarations. For example, under the amendment, a neutral adviser must declare that they do not and will not employ
“any person who has taken part in the provision of assistance for assisted dying”.
This could result in a potentially unworkable duty, as it would require the adviser to make a declaration about current and future conduct. These broad declarations could therefore be practically unworkable and create resourcing challenges by excluding significant parts of the workforce, if interpreted broadly.
Lord Falconer of Thoroton (Lab)
I am greatly obliged.
I will go through the amendments but, before I start, it is clear, as I said when I introduced my amendment, that the purpose of the independent advocate is as set out in my Amendment 548A. The job of the independent advocate is to
“represent and support a qualifying person in connection with … understanding the options available to the qualifying person as regards end of life care, or … anything done under this Act, by or in relation to the qualifying person”.
Just to answer the question from the noble Baroness, Lady O’Loan, as to what is meant by
“anything done under this Act, by or in relation to the qualifying person”,
the independent advocate can provide help on every aspect of it—for example, assisting in any representations that person wants to make or getting in touch with somebody that the person wants to help them make a decision. It does not envisage assistance in the last act, which is taking the substance, because it is clear in the clause that that needs to be done by the person alone.
The following words,
“anything done under this Act, by or in relation to the qualifying person”,
are used in addition to “understanding the options” because, whenever someone is going through a process, they may well understand it, but they may want help with, for example, preparing documents, filling in forms or working out whom they need further advice from. That is the relationship there. I also echo what the noble Baroness, Lady Cass, said: the purpose of the independent advocate is not to be an independent advocate for assisted dying; it is to help the person going through the process to understand the process and to come to their own decision. Can I move on to—
Baroness Finlay of Llandaff (CB)
Can the noble and learned Lord clarify the support? If the lethal drugs are there and the person feels that they cannot take them in the form that they are presented, is the independent advocate to be involved in any alteration of the preparation, such as crushing tablets or heating up substances that might make it easier for them to be swallowed?
Lord Falconer of Thoroton (Lab)
Absolutely not. Indeed, the way the Bill is drafted makes it absolutely clear that the independent advocate is there to assist in the process of obtaining the consents and making sure that the person, as they go through that process, understands the whole process. The people to whom the amendment seeks to provide the assistance of an independent advocate are defined specifically as people with a mental disorder under the Mental Health Act or people, as I have gone through already, with particular difficulties understanding, communicating or using or weighing that information.
I will pick up the point that the noble Baroness, Lady Cass, raised: if someone has a difficulty in understanding or retaining information, it cannot be envisaged that they would have a firm and settled view. I broadly share that view—but remember that the independent advocate comes right at the beginning of the process. If there are question marks in people’s minds, people should have an independent advocate. It may very well be that, if someone cannot understand relevant information, they cannot possibly have a clear and settled view. I do not think that they should be deprived of somebody to help them through the process right from beginning. That is why the range is there—because it takes place right from the beginning. I also express gratitude to the noble Baroness, Lady Cass, for broadly supporting the approach that we have taken on the words “independent advocate”.
I will go through the particular changes. First, in her Amendment 168, the noble Baroness, Lady Grey-Thompson, states that everybody should have an independent advocate right from the start. No, I do not think that that is right. An independent advocate should be restricted to those who are qualifying persons, because that is what the role is trying to deal with.
Amendment 300 says there should be an advocate for disabled people. That is also reflected in Amendment 553B, which refers to anybody with a disability under the Equality Act. Again, I say no. The purpose of the independent advocate is to help somebody who has an understanding difficulty or a mental health problem. We have therefore restricted entitlement to an independent advocate to the specific group of people who have an understanding difficulty. I was also struck by the point made by the Minister that very many people who are terminally ill—for example, with cancer—would fall within the category of “a disabled person”. It is not intended that everybody who qualifies needs an independent advocate.
I have dealt with the amendments on the purpose of the independent advocates. I have dealt with the questions raised by the noble Baroness, Lady O’Loan, on what the role will be, including in relation to the word “or”.
A point was made about consulting bodies—I cannot remember who made it; perhaps it was the noble Lord, Lord Jackson—and that we should consult before making regulations under my Amendment 549(2)(b). Section 55 gives the Minister power to consult with anybody he or she thinks appropriate, and that is probably okay in relation to that.
The noble Baroness, Lady Coffey, proposed an amendment that would require that no independent advocate could deal with more than 10 cases in a year. I do not see that that is a sensible or necessary provision. Many people who are qualified as independent advocates will be doing this full-time. I do not see why the number should be restricted to 10.
The noble Lord, Lord Goodman, suggested that the regulations should be subject to an affirmative resolution. I agree. My Amendment 862A does that.
The noble Lord, Lord Gove, spoke to the amendments tabled by the noble Lord, Lord Frost, who we are very happy to see in his place. We had had bad news that he was not available before 6 pm, so we are very glad to see him now. His amendments were ably advocated for by the noble Lord, Lord Gove, and the noble Baroness, Lady Lawlor. I am against the proposal that he is making. The proposal, as I understand it, is that where the registered medical practitioner says that they are not willing to conduct this primary discussion—obviously, the main reason would be because they were against it—we should set up a group of neutral advisers for this specific group, to which you have to be referred for the purpose of getting another Clause 5 conversation.
Noble Lords will recall that the Clause 5 conversation has to be conducted in a way that gives rise to all of the options. The preliminary discussion—the explanation to the person—must not be conducted in isolation, referring only to assisted dying, but must refer to all the options, the prognosis and the treatment. What is being proposed, as I understand it, is that a system of neutral advisers should be set up for when somebody refuses to conduct that consultation so that the person is not sent to somebody who might be biased. Remember, this is taking the person from somebody who refuses to do the preliminary discussion to somebody else. I understand the point, but that seems both unnecessary and inappropriate.
Baroness Lawlor (Con)
Say we have a medical practitioner who does not, for the reasons the noble and learned Lord has given, want to discuss this. What is to make sure that the person, the organisation or whatever it is, the vague entity under the Bill, to which the person will then be referred, is not part of a, if you like, mafia of employees—because it does not necessarily have to be a doctor to whom the person is referred—who are in the vanguard of protagonists of assisted dying? This is the concern that that seeks to deal with in a state service.
Lord Falconer of Thoroton (Lab)
What I understand the noble Baroness to be saying is that a doctor who will not conduct the conversation because, for example, he or she is against it on conscience grounds, might refer somebody to what she describes as a pro-assisted dying mafia. First, that seems to me to be unlikely. Secondly, the Bill cannot prevent people talking to anybody they like about assisted dying. We have free speech in this country. Thirdly, the Bill provides that before you can have an assisted death, you have to have a Clause 5 conversation, which requires the doctor—legally—to put every option before you. What is being proposed is a network of neutral advisers to ensure that before you get to the second Clause 5 doctor, you have not talked to somebody who might be pro it, who you are not prevented from talking to anyway by the law. No, I am not in favour of it.
Baroness Grey-Thompson (CB)
I thank all noble Lords for the debate this afternoon and the noble and learned Lord for explaining his amendments. I think the answer to the problem that we are trying to solve is somewhere in the middle of this group of amendments. I still have a level of concern about whether an individual knows what they are saying yes or no to with the independent advocate and their understanding of the information that they are given. I would be very concerned if it turned into some sort of tick-box compliance in terms of someone’s understanding.
I thank the noble Baroness for her confirmation that, under the Equality Act, someone with cancer or leukaemia would count as being disabled. It was not my original intention for everybody who wanted to enter this process to have somebody independent alongside them.
Baroness Hayter of Kentish Town (Lab)
I therefore understand that the noble Baroness does not mean this for everybody, but only for people in a restricted category.
Baroness Grey-Thompson (CB)
In the context of this amendment, I meant it in a restricted category. I did not want to start withdrawing amendments and retabling them, because, in Committee, I think it is useful to explore such issues. I am not sure for anyone reading the Marshalled List on the outside—for any who do—that it is terribly helpful to see that amendments have been withdrawn. It has been a really useful discussion to have in Committee.
I thank my noble friend Lady Cass for raising the issue of remembering information, and I thank my noble friend Lady Finlay of Llandaff for bringing in a sporting analogy. I was thinking about the work that I do outside this Bill, and over the years I have done a lot of work on concussion protocols. In the early years, when concussion protocols in sport were brought in to help make sure that people did not carry on playing rugby or other sports while concussed, there was a lot of coaching going on because the same questions were asked through the concussion protocols: do you know what day it is?; do you know who the monarch is? The answers were learned. In that moment, people might not have been able to answer the question but they had learned the answers. The point raised by my noble friend Lady Cass is something else that we need to think clearly about.
Another area I work in is anti-doping in sports. We now have a new system. It used to be that the governing body of the sport would take tests from the athletes and then, if there was an adverse finding, do the policing on that. An independent system, UK Anti-Doping, was purposely developed so that the governing body could, if there was an adverse finding at the first or second stage, guide an athlete through really complex processes. This is just anti-doping in sport, and the athletes are educated about it at least every year, but if even something such as anti-doping in sport is hard to understand—between what is written in a document and what happens when you are in the process—assisted suicide probably deserves a bit more.
I am not convinced by the amendment tabled by the noble and learned Lord. I still do not think it provides enough of a safeguard. I would be interested in being able to tie up what the noble and learned Lord said in the Chamber and then coming back with some stronger amendments.
This is in the context that statutory advocacy is generally of quite poor quality. Less than 15% of people get advocates in other areas when they need them. If you look at advocacy in general, it is worrying that there is no central data collection for advocacy under the Mental Capacity Act. In 2019, a freedom of information request which looked at this area found that 51 out of 139 local authorities did not collect data on IMCA support. There is still limited data on Care Act advocacy. The CQC said that, for Care Act safeguarding, where there is a duty to appoint an independent advocate, in England in 2025 some 83.38% of those lacking capacity had an advocate appointed. To pick some random counties, in Derbyshire, the figure was 14.38%; in County Durham, it was 32.64%; and in Liverpool, it was 53%. Where there is a duty to appoint one and the figures are so low, I wonder whether the take-up in this space would be very limited.
I still do not think that we have the right balance between accessing the process and safeguarding, but at this stage I beg leave to withdraw my amendment.
Lord Moylan
“(aa) where the prognosis is based on a median life expectancy, the distribution of the data underlying the prognosis;”Member's explanatory statement
This amendment requires the registered medical practitioner to discuss the underlying data on survival from which the median prognosis has been calculated
Lord Moylan (Con)
My Lords, I will speak to Amendments 175 and 384, in my name, and I am grateful to the noble Baroness, Lady Fox of Buckley, for her support.
These amendments concern prognosis. We have discussed prognosis briefly in previous debates, but I wanted to raise this in the context of my own experience of cancer and to bring some sort of mathematical thinking to bear on the question. In August 2023, I was diagnosed with stage 4 oesophageal cancer. It was a fatal diagnosis and I was told that I had 12 months to live—18 months, if the character of my tumour qualified for immunotherapy, which it did. I do not need to be congratulated on being particularly brave for sharing this story, since noble Lords will hear, if they stick around, that the story has a happy ending.
Within a week or so of that diagnosis, a friend of mine sent me an article which had been written in 1991 by Professor Stephen Jay Gould of Harvard University. Professor Gould was an evolutionary biologist, and he was quite well known because he wrote a number of popularising science books—the sort of thing that sixth-formers and undergraduates would have read widely. He was a well-known and liked figure. The article was about his story. In 1982, he had been diagnosed with abdominal mesothelioma, a fatal condition, and the hospital would not give him a prognosis. When he got back to Harvard, he went straight to the medical library, and he found on reviewing the literature that he had eight months to live.
After about 15 minutes of shock, he began to think about what that meant, and he realised that the prognosis was in fact, arithmetically speaking, a median. All that it actually meant was that half the people in his condition would be dead by eight months and the other half would live longer than eight months. In fact, this median told him nothing about himself; it was an abstraction. To understand his own prospects, he had to look at the underlying data. When he looked at it, he found that quite a lot of people lived quite a long time beyond eight months in his condition. He said that
“all evolutionary biologists know that variation itself … is the hard reality … Means and medians are the abstractions”.
He asked himself, “What do I have to do to be one of those people who live a long time?” Speaking to oncologists, he learned that the universal response from all of them was that the key to survival in cancer was a positive attitude. To quote again briefly from the article,
“those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, and with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say tend to live longer”.
That is how he approached it, and I think we can learn a few lessons from this. I would like to run through what I think they are.
Baroness Royall of Blaisdon (Lab)
My Lords, what the noble Lord says and the article that he cites are very interesting. I am jolly glad that, for some people who have positive attitudes, they live a long time with their cancer. I know from personal circumstances, as do many other people around this Chamber, that we have had loved ones who have had very positive attitudes towards their cancer and they have died.
Lord Moylan (Con)
My Lords, I am not saying—nor was anybody—that a positive attitude on its own is going to save somebody from cancer. Professor Gould also benefited from the fact that he had the best medical treatment, and he went on various experimental courses. That was not my point at all. But people with a positive attitude, as I quoted, tend to live longer. I think that is scientifically demonstrable. I am surprised at the noble Baroness’s intervention.
I think we can learn some lessons from this. First, prognoses are not generally individuated. They are medians drawn from large data sets based on clinical trials. As Professor Gould said, if you get a prognosis of six months, the average person will think that means that they are going to be dead in six months, which, from a scientific point of view, is precisely the wrong conclusion.
Secondly, even when a prognosis is not based on a median but is an attempt by a doctor to give an individual assessment, it is very likely to be wrong. There are well-established studies on this. I will cite just one, which is Orlovic et al in 2023. It shows that, beyond 14 days, a clinician’s prognosis is almost always wrong. It is extremely unreliable. Within that shorter period of a week or two, a doctor and indeed an experienced nurse can very often say, with great reliability, that somebody is not going to last very much longer. But beyond that, an individual prognosis is of very little value indeed.
I think we all accept that for anyone who gets a prognosis, there is a degree of unreliability about it. Nobody believes that a six-month prognosis means exactly six months, or that eight months means exactly eight months, but we have a tendency to think that it is because we do not have enough knowledge—that with a bit more science and research, we could refine that prognosis so that it was more accurate. But as Professor Gould pointed out, the prognosis is merely an abstraction arising from the variability in the data. It is not that we cannot make the prognosis more accurate; it is that—
Baroness Murphy (CB)
We have discussed this issue at some length before, but I wonder if the noble Lord, Lord Moylan, has considered that the Bill does not say anything about a definite diagnosis. The phrase is “can reasonably be expected”. It does not mean that anybody has to agree with a diagnosis that it will be four, five or six months, or any particular time; it is “can reasonably be expected”.
I would like to come back on the noble Lord’s issue about people with a positive attitude. Does he accept that it is not just people with a very positive attitude who have good expectations? There are now numerous studies of people with breast cancer showing that the alternative, to totally deny it, also has a slightly better prognosis. There are different ways of approaching these bad news prognoses and people can adapt their own way of dealing with issues from them. I hope he will note that.
Lord Moylan (Con)
I am now precluded from taking further interventions, because there is a limit on how long I can speak and that was a very excessive intervention. I will discuss with the noble Baroness outside the Chamber what a reasonable expectation is, if it is not based on a prognosis. I do not know what the functional difference is. As for being in denial, funnily enough, an oncologist said to me that being a bit in denial is quite a good thing. In my own case, I managed to combine a positive attitude and a certain sense of denial; I agree that these things can work. It is quite complicated. But none the less, I am going to continue with what I wanted to say.
Thirdly, the title of Professor Gould’s article was, quite subtly, The Median Isn’t the Message. Yet at the heart of the Bill is a six-month prognosis—we may call it a reasonable expectation—in which that is exactly the message. It is that flawed message which we are making the heart of the Bill.
Lastly, I think we are all agreed that a positive attitude can help, even if denial can help as well, but in using this Bill, we do not inculcate a positive attitude. What we actually say is: “You have six months to live and here is the pills option. That’s another option you can take”. We should be promoting a positive attitude, and the Bill does not do that.
My Amendments 175 and 384 simply require that in the three doctor encounters that are required—in the preliminary discussion, with the co-ordinating doctor and with the independent doctor—there is an explanation of the underlying mathematics or, if you like, the underlying data of the condition that the person has as part of the conversation. The amendments would make that mandatory, so that the idea that the six-month diagnosis is a prediction is not lodged in the mind of the patient.
Professor Gould died in 2002. That was 20 years after his original diagnosis, and he did not die of mesothelioma. In my own case, I took Professor Gould’s article to my oncologist—it was our second meeting—and I said that, in the light of his experience, I was not satisfied with 18 months, that my target was 20 years and that anything less I would consider failure. It seems to have worked because, within three months of the diagnosis, I was discovered to be in complete metabolic remission, a condition I have stayed in. If you have had stage 4 cancer, they will not use the word “cured”, but I am as close to cured as you can be, and I am in complete metabolic remission. I still have 18 years to go on the bargain I struck with my oncologist.
I occasionally hear rather rude remarks about Dame Esther Rantzen—that she was given so long to live and she is still alive years later. I never share those comments; I reject that attitude completely. There are lots of people, such as her and me, who live out there in the farther reaches of the third standard deviation, with our heads hard up against the roof of the bell curve. That is natural because, as Professor Gould says, variation is the reality and the prognosis—the median—is the abstraction.
We have put something false and misleading at the heart of this Bill. There are very few conditions for a person to embark on a course that leads them to an assisted death; one is residence, one is capacity and one is this six-month prognosis. We have put this right at the heart of the Bill, and it is, as I say, false and misleading. It is a fundamental flaw in the Bill, and I would like noble Lords to reflect on that and I hope, on that basis, at the very least, agree my amendments. I beg to move.
Lord Carlile of Berriew (CB)
My Lords, “All’s Well That Ends Well”, and it is always a pleasure to follow such a story, particularly as it is the story of someone who told it to your Lordships himself.
I put my name to the noble Lord’s amendment and intend to address it not from the viewpoint of positivity and negativity—I tend to view that as mostly potluck— but from the viewpoint of facts. The fact I start with is an assumption: that everybody who is given a prognosis by his or her doctor desires to make an informed decision and, if they wish to make such an informed decision, that it should be based on some factual and scientific basis. All that these amendments would do —I speak not particularly to their very words but to their meaning—is require that a doctor or any other clinician who is giving a prognosis should do so on a solid medical and scientific basis: a prognosis that is founded in medicine, not stories and the last three patients they happen to have seen who had a serious illness.
I have spent a lot of time in recent weeks reading articles. There are some amazing American articles in which huge statistical samples are taken, but on this subject they all come to a similar position. For example, in one major study, only about 20% of predictions of six-month deaths were within a close range at all of ultimate survival. This is a very unscientific part of what clinicians tell their patients.
Judging the moment of death becomes very difficult the further you are away from the actual death, but it is very difficult to know how far away you are from the actual death. When my father—who was the most reasonable person I have ever known, by the way—was dying, the night before he died, 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. He and I had been the same size at a certain point in our lives, and of course I did. We knew the moment he said that—because I knew how ill he was, the family were there, the doctor was there, we were going through his last moments and it was a very happy death, a great family deathbed scene—that he would be dead by the following day. He died the following morning.
However, when someone walks into the consulting room like the noble Lord, Lord Moylan, and is told that he is seriously ill, it is just an opinion at that stage on the part of the doctor, who may have varied experience and may actually have no scientific basis for what he or she is saying. Even what is now called GEST, 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. I have also looked at actuarial tables because a surprising number of elderly and very ill people try to insure their lives for a relatively short period. A lot of companies insure senior directors for one year; I think it is called key person insurance. It is all based on mathematics, but it is not actually science.
So I do not think it is asking much of the noble and learned Lord that there should be a provision in the Bill that means that, in every single case when the patient asks for an informed decision, he or she is given the basis upon which that information is founded.
Baroness Hayter of Kentish Town (Lab)
My Lords, I am pleased that the noble Lord who moved the amendment is in remission from his cancer. On other Bills we wish he was in remission from his political views, but on this one we celebrate with him.
I used to run a cancer charity, and the truth is that on this issue not everyone is using statistics. Doctors are often using their eyes; when we are talking about the last weeks it is their eyes, rather than going to any statistical table, that will tell them. There is an assumption that all this is going to be based statistically on the six-month period, but it is not like that. My own guess is that most people who are dying will probably start thinking about this only at three months. Tonight I am going to be dining with a recent widower. His wife—a very well-known author but it does not matter who she was—had cancer. She fought it, but fighting it is not enough. It was only really in the last weeks that she realised that what she wanted was help in those weeks. It was at that point that she tried to get to Switzerland, but by then it was too late.
My judgment is that much of this, for many of the patients who will be asking for this, will be very much towards the end. I will be surprised if at that point the doctor is going to their statistical tables, because at that stage the patient’s age and underlying health and other factors will contribute as much to assessing whether it is going to be days, weeks or maybe a month as the particular type of cancer that they have. This attempt to make that process overscientific is probably not right, and we should have faith, which some people in this House do not seem to have, in doctors.
Baroness Fox of Buckley (Non-Afl)
My Lords, it is hard to follow the noble Lords, Lord Moylan and Lord Carlile, whose contributions were made with such panache, wit and insight. What really intimidated me was the noble Lord, Lord Moylan, saying, “This amendment is all about understanding the mathematics”. I thought, “Oh God, I’ve put my name to it. There’s been a terrible error”. I bring absolutely no mathematical understanding to the question.
I put my name to the amendment on the requirement that medical practitioners should discuss underlying data on survival—in terms of the median prognosis of six months and how it is calculated and so on—because I am interested in ensuring that there is maximum transparency for patients under the Bill, so that any choice that they make is well informed. The Bill rightly requires that an applicant for assisted dying is informed, so it seems obvious that being informed should include an understanding of the context of the data and the reliability of a prognosis, which would help them to inform themselves.
Baroness Watkins of Tavistock (CB)
My Lords, we have already had extensive discussion about the multidisciplinary team involvement. In 50 years of nursing—not all in clinical—I have never heard a doctor come out with, “You’ve definitely got six months to live”. There are much more subtle conversations.
I accept that people with MAID sometimes want to discuss it and say, “If I come off the support that you’re giving me, how long would I live?” Some of the answers can be very straightforward and we still enable patients to stop treatment when they want to.
I am also delighted that the noble Lord is alive and that he clearly understands statistical formulae.
Baroness Fox of Buckley (Non-Afl)
I just want to ask the noble Baroness for one clarification. I agree that most doctors are not brutal and do not say, “You’ve got six months and that’s it”. I asked whether the Bill, which requires you to have a six-month prognosis to access the service, will encourage doctors to feel that they have to be more definitive to allow people to access this service.
Baroness Watkins of Tavistock (CB)
I do not think so. I have greater faith in the medical profession and the multidisciplinary team.
Baroness Noakes (Con)
My Lords, I want to make a few points following the contribution from the noble Baroness, Lady Fox. First, she referred to MND and the problem with some people who appear to live quite a lot longer than expected. The real problem with MND is that these patients almost certainly will not qualify to be classified as terminally ill under the Bill. The speed of progression of the disease usually means that getting a six-month diagnosis is almost impossible, so motor neurone disease patients will find it very difficult to fit themselves within this. This is, I think, widely acknowledged.
Secondly, all this discussion has been based on the prognosis given by a doctor to his patient. The Bill requires it to be established that the individual is terminally ill for assisted dying to be available. That decision must be made by the first doctor, the second doctor and the panel. These are not doctors giving informal indications to their patients about the amount of time they may have left to live; these are people having to come to a professional judgment. Of course, if they cannot agree on that professional judgment, the decision will not be that an assisted death can be given. It seems that, in the context in which the prognosis is given—that is, to satisfy the definition of “terminally ill” in this Bill—there are many safeguards that would mean that we have a relatively safe definition of six months by the time all those who are involved in the process agree it.
Baroness Cass (CB)
My Lords, on the point made by the noble Baroness, Lady Noakes, the person or people who will make the best judgment about prognosis will be the treating team: the treating doctor and the multiprofessional team. I have always been somewhat dubious about how much those successive doctors can add to prognosis, as they will not be specialists in the area. I just make that point.
I am always gratified but slightly alarmed at the faith that noble Lords place in doctors. It was not always what I experienced in practice, when many of my patients arrived with an internet search knowing more than I did about the condition, especially as I worked somewhere where we often saw young people with rare disorders.
A number of things are getting conflated in this debate. When a previously young, fit person walks through the door with a cancer diagnosis, there will be a series of trials and data on the prognosis for that age group with that diagnosis. Then it narrows down as there are the specific features for that individual. Then they start treatment and, as the treatment goes along, your prognosis gets more individualised as they do or do not respond to the treatments they are being given. Ultimately, it may become clear to the treating team that that person is no longer responding to treatments, and it becomes a very individualised prognosis at that point. So although you may start off with statistics, which are very broad, you end up giving the best advice about what you see before your eyes—as the noble Baroness, Lady Hayter, said—in relation to how that patient is responding to treatment and how they are doing.
The further complication that stops you depending entirely on the papers that you have just read is where that person started off with diabetes, heart failure or a series of other complications. There just is not specific data for that complex of conditions that the patient may have, so it will be significantly dictated by clinical judgment, ideally by the whole multiprofessional team. We need to distinguish people with a clear cancer diagnosis, where there is lots of data, from people who have a mix of the more usual things that we see in the elderly population: cardiac problems, respiratory problems, diabetes, Parkinson’s—a whole complex of things. It then becomes, again, something that you cannot 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 treatment. I should sit down at this point, as I should not proceed further when my noble friend can speak to this with much greater authority.
Baroness Finlay of Llandaff (CB)
I am most grateful to my noble friend Lady Cass for that introduction. This debate is extremely serious. Sometimes there has almost been black humour during it, but people have had devastating experiences and that is often what has brought them to this position.
I am grateful to the noble Baroness, Lady Royall, for intervening earlier because there are people who are desperate to live and suddenly deteriorate, and there are others who are quite resigned to dying and carry on living for quite a time. It is very variable. I also thank the noble Baroness, Lady Noakes, for flagging up the specific issue of motor neurone disease, because the disease trajectory is the important factor that will give you an indication. The problem is that although cancer is probably in some ways easier than most other conditions, motor neurone disease is incredibly variable, just as MS is, with dips and troughs and times that are much better and intercurrent infections, each one of which might be fatal. I remind the Committee that when we discussed this previously, I stressed that I wanted amendments about the progression of the disease—the disease trajectory. Those amendments were rejected, but I still think that they might solve the problem slightly better.
I remind the Committee of the wise words of the noble Lord, Lord Wolfson, when he summed up the previous group of amendments. I will not go over that again, but he really got to the point about the impossibility when patients want to know their prognosis. It is not often in medicine that you say never, but I have learned never to give a prognosis in terms of a number. I often say to people, “It would be easier for you and it would be easier for me if I could predict”, and then I help them in terms of quite simply planning for the worst, hoping for the best, and discovering what they want to do in whatever time they have left and how they want to do it. It is surprising how some people live remarkably long and some people, sadly, live for a remarkably short time, but even when you think someone is going to die in the next 48 hours and you suggest to the family that they stay in overnight, you can still be wrong. Many is the time when I have had a family stay overnight, they are exhausted the next day and the patient, fortunately, is sitting up in bed having breakfast, which is a relief, but people are tired.
I think the history of the six months came about because of the benefits system—oh, the noble and learned Lord shakes his head. Well, I shall just say a brief word about that. There are enhanced benefits that people are eligible for. It used to be that you were eligible for fast-track benefits at six months. What happened was that, because people heard that as some kind of prognosis, doctors and nurses were very hesitant to recommend going for benefits then, which is why there was all the discussion with the Department for Work and Pensions to move to the special rules at one year, when it is much easier to talk to a patient and say, “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 even be called for an assessment for three years, so let’s go for it now”. That can help people in difficult financial circumstances.
However, to get back to the point of the amendment, while the mathematics behind it are admirable—there is a serious misunderstanding of what “mean” and “median” mean, and many people do not understand the difference—I hope that these amendments will not be considered at all. I plead that we look at the course of disease in terms of determining whether somebody is likely to die, and then the probability of them dying within a six-month period. That probability assessment needs to be clearly written down and clearly defined so that people are not misled in either direction.
Lord Rooker (Lab)
My Lords, as usual, I came to listen and not to speak, but there are a couple of things that have been said to which I want to react. I agree entirely with my noble friend Lady Hayter, to be honest.
I will not go into the details, but I lost my first wife before the internet. There were no internet searches at all, because it was so long ago. We could work it out. It kept coming back in half the time—three years, 18 months. She was still at work—no problem there—managing a college in south London. It was coming back in half the time, so it was fairly obvious that you could measure it. We did not do it like that, and it was only later that we worked out that it came back in half the time.
When I went through it, I had no warning at all. I say to the noble Lord, Lord Moylan, that there was a consultant who had looked after me since the beginning, when I had no warning. About four years after I finished chemo—she was going off somewhere else to do research, so I was not going to see her again—she said to me, “You have to remember that the drugs deal with only half the problem”. That made me very satisfied. On the other hand, I have gone through cases involving people who were as positive or more positive than I was, but it got them in the end. That is what I remember. The drugs deal with only half the problem.
Lord Stevens of Birmingham (CB)
On the thrust of the argument, I agree with the noble Lord, Lord Moylan, that approaching this probabilistically, rather than with a single number, clearly makes sense. It is wonderful to hear the impact that these new immunotherapies have had in his own personal case as well as for oesophageal cancer.
Just for the record, I want to associate myself with the comments of the noble Baroness, Lady Royall, because the evidence is pretty clear that there is not an association between positive thinking and cancer survival. There may be a link with quality of life, but frankly, it is perfectly normal, having had a cancer diagnosis, for people to feel depressed or anxious.
The only reason for raising this very briefly at this point is that we need to be very sensitive. When somebody’s cancer progresses and ultimately kills them, we should not be leaving the impression that we think that is because they lacked the positive attitude that would in some way have enabled them to survive. I know that is not what the noble Lord was suggesting, but just for the record, I think that the noble Baroness, Lady Royall, was right to draw that to our attention, and we should be clear about that.
Baroness Jay of Paddington (Lab)
To add to what the noble Lord, Lord Stevens, said, I very much dislike the death notices, for example, which refer to people having put up a great fight or having failed to deal with the battle, or whatever expression is used, which suggests precisely what the noble Lord said—that they have somehow failed in a mortal combat.
Lord Young of Norwood Green (Lab)
My Lords, I only want to challenge the point that was made that the Bill suggests that six months is inevitable. It does not do that at all. In fact, all Clause 7 says is that if you go to the doctor, there will be a record of a preliminary discussion. It does not say anything else. Clause 8 refers to the initial request for assistance and first declaration. Where does the idea come from that the Bill somehow inevitably leads to a six-month progression? There is no such thing in it, other than the fact that the doctor is required by law to produce a written record of the preliminary discussion. In that preliminary discussion, he or she could raise a whole range of things, as we have heard from noble Baroness, Lady Cass, and a number of others.
Lord Moylan (Con)
We are all agreed that the reference to six months is to be found in Clause 2, where it says that
“an inevitably progressive illness or disease which cannot be reversed by treatment, and … the person’s death in consequence of that illness or disease can reasonably be expected within six months”.
Lord Hamilton of Epsom (Con)
My Lords, I have always considered that the six months was critical to the essence of this Bill, because there has to be some point at which doctors say that you are likely to die. Misdiagnosis has been a problem. I recognise the remarks of the noble Baroness, Lady Murphy. We have discussed misdiagnosis before, but when we did, and it was then summed up by the noble and learned Lord, Lord Falconer, he airily said that perhaps some of these diagnoses of six months may be a little wrong and it could be more like eight months. What he failed to address was my noble friend Lord Polak, who was given six months to live. That was 32 years ago—and we are still counting. When you get things that badly wrong, you have to really question whether these diagnoses are going to be in any way meaningful at all.
It seems to me that, if we have these tremendous variations, they totally undermine the whole essence of the Bill. We are saying that, if people have got only six months to live, they should apply for assisted dying, but it may be that they live for years afterwards.
Baroness Hayter of Kentish Town (Lab)
I think the noble Lord meant to say that they could apply, not that they should apply.
Lord Hamilton of Epsom (Con)
All right—they could apply, if that helps the noble Baroness, Lady Hayter.
We have to think closely about this, because this is the essence of the Bill. I do not understand how we can be comfortable with the whole idea that some of these diagnoses will be completely wrong and, as a result, there will be people who will apply for assisted dying who might have lived for years. This strikes me as being a disturbing element of the whole Bill. We should be seriously considering whether something should be done to address this problem. I am glad it is not my difficulty.
Baroness Lawlor (Con)
My Lords, my noble friend Lord Moylan and the noble Lord, Lord Carlile, have told us about the uncertainty of the statistical evidence, and indeed the unreliability. That points to a flaw at the heart of the Bill, for which a condition for eligibility is that death must be reasonably expected within six months in consequence of that illness. What then is at the heart of the Bill, if I may develop the point a bit, is a process for managing assisted suicide in consequence of something which is not at all certain.
I have to say that, in the areas we know about where the state has a process for providing a service, particularly in education, we see that a state service is not geared to the individual case. One of the points that my noble friend Lord Moylan explained was the individual case, and most noble Lords agree with this. How are we going to have a state service, as is proposed by the sponsor’s Bill, for a general cohort, and not the specific individual case, that is reliable for individuals? We see in education and other areas that exceptions continue to have to be made—for instance, for children with special educational needs, particularly autistic children. These are exceptional cases which do not fit the general application of a state service.
The Earl of Effingham (Con)
My Lords, it is a hallmark of the noble Lord, Lord Moylan, to make valuable contributions to debates in your Lordships’ House, and today is no different. The noble Lord is living proof that an average, median or mean life expectancy is incredibly difficult to predict, as is the third standard deviation of the bell curve, which he rightly referenced.
I believe that the noble Baroness, Lady Finlay, said that she never gives prognoses due to the complexity of the answer. Other noble Lords touched on the way a prognosis is calculated in previous debates. Taking such a monumental decision of life or death based on a medical prognosis derived from a median life expectancy raises questions. That said, it is difficult to see what other measure should be used as the test for eligibility.
Captain of the Honourable Corps of Gentlemen-at-Arms and Chief Whip (Lord Kennedy of Southwark) (Lab Co-op)
My Lords, I have noticed that the time now is 5.18 pm. We have no intention of moving on to another group. When this group is finished, I will seek to adjourn the House. I say to any colleagues waiting for another debate that it will not be happening this week.
Baroness Merron (Lab)
My Lords, The Government do not have major workability concerns with Amendments 175 and 384, tabled by the noble Lord, Lord Moylan, whom we are very pleased to see in his place; long may he continue to be there.
I will say a few words about clinical practice, which may be helpful in addressing some of the points raised, including those just now by the noble Earl, Lord Effingham. Most of the questions were really about the Bill and are therefore matters for the sponsor, but I will make a couple of points about clinical practice. It is rare for a clinician to base prognosis on a median life expectancy. In addition, explaining the data used is not common clinical practice. I hope that is helpful to noble Lords.
The issues raised are rightly for noble Lords to consider and decide. Of course, that means that the way the amendments are currently drafted may require further consideration to be fully workable, effective or enforceable.
Lord Falconer of Thoroton (Lab)
My Lords, can I share everybody’s genuine pleasure that the noble Lord, Lord Moylan, is here? Can I not congratulate him on telling us about it? I would have done, but he told me he did not want it, so I respect his wishes. I thank my noble friend Lord Rooker for being willing to share his experience of the death of his first wife. I also associate myself with my noble friend Lady Royall; from personal experience, one should not feel that one has got some obligation or is in some way defective if one dies quickly of cancer or takes a particular attitude. We should not be censorious one way or the other as to what attitude people take when confronted with a terminal illness. How would we all react when confronted with it? We probably do not know.
First, we have had a debate about the six months, and I am incredibly unkeen to revisit the six months because I do not think that that was the frame within which the noble Lord, Lord Moylan, tabled his amendment. His amendment is about what is to be told to the patient rather than whether six months is right—I am gratified that the noble Lord, Lord Moylan, is nodding. I will focus on the issue: how should the patient be told? His amendment is in Clause 5, which is about the preliminary discussion. It requires the doctor conducting the preliminary discussion to discuss the person’s diagnosis and prognosis. It requires the doctor to refer to any treatment available to the patient, and the likely effect of the treatment, and it requires them to go through
“all appropriate palliative, hospice or other care”—
it is not just palliative and hospice care; it is other care as well—
“including symptom management and psychological support, and offer to refer them to a registered medical practitioner who specialises in such care for the purpose of further discussion”.
It is a detailed discussion about the prognosis, diagnosis and likely effect of treatment.
I was struck by the speech made by the noble Baroness, Lady Watkins. The idea that you are told you have six months to live, and that is it, is extraordinarily unusual. The idea that this happens is very unlikely; that it could happen in this context seems to me to be extraordinarily unlikely. Noble Lords will be aware that, in Clause 7, there must be a record kept of this conversation. The iniquity that one is trying to deal with seems to me to be unlikely to arise.
Should we be putting into the Bill the specific statistical material that has to be given? If you are relying on a median or an average, do you have to say that you are doing that and what the variations are? No, I am not in favour of that. There is a power for the Secretary of State, by codes of practice or guidance, to give indications as to how it should be dealt with. I trust doctors more than many people in this debate. It would be unhelpful to put in words such as those in the amendment into the Bill, so I am against the amendment.
On a completely separate issue, we have debated the question of the prognosis and the reason for the six months. I strongly adopt the words of the noble Baroness, Lady Noakes, that this is not the view of one person; this is the view of two doctors and a panel of three. This is not just a question of one prognosis and it is over. That is an issue that we dealt with previously. I am delighted that the noble Lord, Lord Moylan, was in a position to move the amendment. I am sorry to say that I do not agree with it.
Baroness Finlay of Llandaff (CB)
Does the noble and learned Lord recognise that, if the earlier part of the Bill and this clause had compatible wording over the progress and disease trajectory of that individual patient, that would make it easier for patients to make a decision and much easier for doctors having those conversations, whether it is the first conversation, the assessment or the independent doctor? It would also allow changes in medical science, which happen very rapidly, to mean that people were not stuck with the wording in the Bill. It would allow changes in information giving. So will the noble and learned Lord consider revisiting the word “prognosis” and clarifying it better in the Bill?
Lord Falconer of Thoroton (Lab)
I did not quite understand the question, but I think the noble Baroness is going back to her amendments that we discussed previously about how you have to have regard to the progress of the disease. I think she is saying that you have to have the preliminary discussion, the first assessment and then the secondary assessment, and therefore you have time—I see the noble Baroness shaking her head, so perhaps she could raise it with me separately so that I understand it.
Baroness Finlay of Llandaff (CB)
I would be delighted to raise it outside the Chamber; it was a little more complicated than those three points.
Lord Moylan (Con)
My Lords, before he vanishes, I thank the noble Lord, Lord Carlile of Berriew, and apologise to him for not acknowledging in my opening remarks the fact that he had added his name to my Amendment 175.
I would be disappointed if the noble and learned Lord were, at this advanced stage of Committee, to agree to an amendment proposed to the Bill. He has not disappointed us; he has rejected it. The fact is that Clause 5 requires the discussion of prognosis, as he says. Any prognosis worth its salt has some data at the basis of it, and I am simply asking that that position—the spread of that data and the range, as my noble friend Lord Effingham referred to it—should be a part of that discussion so that people understand that, if they are told they have so many months to live, that is not a prediction but, in technical terms, a median based on underlying data. That data should be disclosed.
This is an unusual debate for me because it is the only one in which I agree with everything that everybody—apart from the noble and learned Lord—has said. I even found myself agreeing with the noble Baroness, Lady Jay of Paddington, that the language of combat and struggle is really not appropriate for people who are suffering from cancer. I never use it myself and, although I quoted Professor Gould using it in my speech, it is not the natural language that I would propose.
I agree with the noble Baroness, Lady Royall, that of course simply talking about positive attitude, and indeed attributing moral value to that, is one aspect only of the management of the diagnosis one might find oneself facing. I am not a Christian Scientist, and I certainly believe that medical treatment—the most advanced medical treatment one can get hold of—is absolutely crucial and almost certainly much more important.
I agree to some extent with the noble Baroness, Lady Hayter, that it is possible for some clinicians at a specific time to be able to tell simply by looking at people that they are not going to live very much longer. But the evidence we have—there are studies about this—is that that is true where there is a very short time left to live, of 14 days or less. People with 14 days or less to live are, in my view, unlikely to have access to the provisions of this Bill simply because there is quite an elaborate bureaucracy attached to it through which one has to pass, and that takes time. The key thing for this Bill is the six months written in it. It is that that we have to look at, and six months prognoses are not particularly accurate. Where there are medians, it is important to understand the basic data.