Terminally Ill Adults (End of Life) Bill

Lord Blencathra Excerpts

Friday 20th March 2026 Lords Chamber

[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 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.