Terminally Ill Adults (End of Life) Bill

Baroness Hayter of Kentish Town Excerpts

Friday 20th March 2026 Lords Chamber

[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.

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I thank the noble Baroness, Lady Hayter, for her question on my Amendment 533. As I said, I tabled all my amendments before the start of Committee. We debated this area in another group, but I chose to keep Amendment 533 in this group because I felt it sat better here. My Amendment 547 relates to people with Down syndrome, and Amendment 300 relates to disabled people with support needs. I very much saw Amendment 533 as sitting alongside those. I agree that I could have worded it better and been more explicit, but that is why I did not move it to a different group.

[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.

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[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.

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[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.