Terminally Ill Adults (End of Life) Bill

Baroness Hollins Excerpts

Friday 20th March 2026 Lords Chamber

[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.

--- Later in debate ---

[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.