Terminally Ill Adults (End of Life) Bill

Lord Weir of Ballyholme Excerpts

Friday 20th March 2026 Lords Chamber

I suggest to your Lordships that we should get on with deciding whether or not this Bill should be passed. As I have said, I am not in favour of this Bill, but let us get on with the parliamentary procedures that are placed upon us. If the Bill is passed, adjustments may have to be made to enable Wales to have the funding, which would be administered by the Government in Cardiff.

[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.

--- Later in debate ---

[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.