Terminally Ill Adults (End of Life) Bill

Baroness O'Loan Excerpts

Friday 20th March 2026 Lords 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.

--- Later in debate ---

[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.