Terminally Ill Adults (End of Life) Bill

Lord Carlile of Berriew Excerpts

Friday 20th March 2026 Lords Chamber

[Baroness Royall of Blaisdon (Lab)]

My Lords, I would like to point out that my noble and learned friend Lord Falconer has in fact tabled amendments and they have not yet been debated because we have not reached them in the Marshalled List. With regard to the very interesting and important discussion about Wales, many of the facts which were quite properly given by the noble Baroness, Lady Smith, are related to the devolution settlement itself. That is, quite frankly, a much wider issue than that which we are debating today.

[Lord Carlile of Berriew (CB)]

My Lords, as a former member of another place who represented 2,900 square miles of Wales, I have the feeling that we are getting into a horrible conceptual muddle in this debate. I feel the phrase “horses and carts” applies to several sentences around what is being debated here. I was one of the advocates of devolution when I was a Welsh Member of the other place and supported it very strongly when it came about, and I absolutely recognise the points that have been made so ably by the noble Baroness, Lady Smith. However, after hearing earlier parts of this debate, what I am hearing is that actually the money side of this is not the horse; it is part of the cart.

We have heard Ministers, including my noble kinswoman by the way, repeatedly saying in response to amendments in this debate that this House and this Parliament decide whether we pass this Bill. If the Bill is passed, the Government will have to provide the resources to enable it to work. I apprehend that, if this Bill is passed, if it is given enough time to reach the end of its parliamentary stages, which I think it should be allowed—though I do not support the Bill in principle, by the way—then the money would have to come from somewhere and the adjustment would be made to enable Wales to provide the services required.

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[Lord Carlile of Berriew (CB)]

Has the noble Lord noted that Clause 42(1) and (3) have identical wording? Both the Secretary of State and the Welsh Ministers

“may by regulations make provision about voluntary assisted dying services in Wales”.

Maybe there is a conundrum that needs to be resolved there.

[Lord Harper (Con)]

I have noticed that. It limits their powers to what is within the legislative consent of the relative bodies. I am not clear about that fundamental point.

My final point comes back to the issue about getting answers. On the first day of our debates, I raised a number of issues—which I will not repeat today—from my experience as a Member of Parliament for a constituency on the border. There are practical questions about how we deal with those cross-border issues and about who sets out the rules for people. Is it based on where they live, or on where their GP is based and who delivers their healthcare services? I asked some very specific questions and highlighted the real issues created by that, if we do not resolve them. We are now on day 12 in Committee, and I have not had any answers to any of those very specific and detailed questions that I asked on day one. It is for reasons like that—I say with respect to the noble Lord, Lord Pannick—that we are making such slow progress. We are asking questions but we are not getting answers.

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[Lord Moylan (Con)]

I am now precluded from taking further interventions, because there is a limit on how long I can speak and that was a very excessive intervention. I will discuss with the noble Baroness outside the Chamber what a reasonable expectation is, if it is not based on a prognosis. I do not know what the functional difference is. As for being in denial, funnily enough, an oncologist said to me that being a bit in denial is quite a good thing. In my own case, I managed to combine a positive attitude and a certain sense of denial; I agree that these things can work. It is quite complicated. But none the less, I am going to continue with what I wanted to say.

Thirdly, the title of Professor Gould’s article was, quite subtly, The Median Isn’t the Message. Yet at the heart of the Bill is a six-month prognosis—we may call it a reasonable expectation—in which that is exactly the message. It is that flawed message which we are making the heart of the Bill.

Lastly, I think we are all agreed that a positive attitude can help, even if denial can help as well, but in using this Bill, we do not inculcate a positive attitude. What we actually say is: “You have six months to live and here is the pills option. That’s another option you can take”. We should be promoting a positive attitude, and the Bill does not do that.

My Amendments 175 and 384 simply require that in the three doctor encounters that are required—in the preliminary discussion, with the co-ordinating doctor and with the independent doctor—there is an explanation of the underlying mathematics or, if you like, the underlying data of the condition that the person has as part of the conversation. The amendments would make that mandatory, so that the idea that the six-month diagnosis is a prediction is not lodged in the mind of the patient.

Professor Gould died in 2002. That was 20 years after his original diagnosis, and he did not die of mesothelioma. In my own case, I took Professor Gould’s article to my oncologist—it was our second meeting—and I said that, in the light of his experience, I was not satisfied with 18 months, that my target was 20 years and that anything less I would consider failure. It seems to have worked because, within three months of the diagnosis, I was discovered to be in complete metabolic remission, a condition I have stayed in. If you have had stage 4 cancer, they will not use the word “cured”, but I am as close to cured as you can be, and I am in complete metabolic remission. I still have 18 years to go on the bargain I struck with my oncologist.

I occasionally hear rather rude remarks about Dame Esther Rantzen—that she was given so long to live and she is still alive years later. I never share those comments; I reject that attitude completely. There are lots of people, such as her and me, who live out there in the farther reaches of the third standard deviation, with our heads hard up against the roof of the bell curve. That is natural because, as Professor Gould says, variation is the reality and the prognosis—the median—is the abstraction.

We have put something false and misleading at the heart of this Bill. There are very few conditions for a person to embark on a course that leads them to an assisted death; one is residence, one is capacity and one is this six-month prognosis. We have put this right at the heart of the Bill, and it is, as I say, false and misleading. It is a fundamental flaw in the Bill, and I would like noble Lords to reflect on that and I hope, on that basis, at the very least, agree my amendments. I beg to move.

[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.