Terminally Ill Adults (End of Life) Bill

Lord Harper Excerpts

Committee stage
Friday 6th February 2026 Lords Chamber

[Lord Blencathra (Con)]

My Lords, I am another Peer who sat here for many hours last Friday, desperately keen to speak to this group of amendments. Towards the end, at nearly 5.30 pm, I heard the magnificent speech of the noble Lord, Lord Rook, who is not currently in his place. It really was an incredible speech. I suppose the only benefit of being a sort of carry-over, tail-end Charlie was that I was able to read his speech in Hansard once again. I commend it as superb. I concluded that there was nothing I could usefully add to what the noble Lord had said, so I have decided not to try to add anything more to it, and I conclude my remarks.

[Lord Harper (Con)]

My Lords, I will speak briefly to put on the record one useful piece of information, which is very relevant to the debates that we have had. Somebody previously referred to the welcome cancer plan that the Government published, and I thought it worth sharing with the Committee that there was an important and relevant piece of information in the plan that your Lordships might wish to be aware of.

I think the noble Lord, Lord Stevens of Birmingham, referred to the Government’s plan for palliative care. When we spoke about it, I think just last week, the expectation was that that plan would be published this autumn—I hope the Minister can confirm that I have got that right. The cancer plan makes it clear:

“Next year, we will publish a Modern Service Framework on Palliative and End of Life Care to address these challenges”.


Without being explicit about it, the palliative care plan has now slipped into 2027, with no indication of when in 2027. Given my experience of these things, it could easily be the end of 2027. We are being asked to consider the Bill when the Government are not even going to publish their palliative care plan until some time next year—and it has already slipped twice in a few months.

I draw two lessons from that. First, if we do not have high-quality, universally available palliative care then we are not giving people a genuine choice. As my noble friend Lord Shinkwin said, expectations in society will push people inevitably towards assisted suicide, whether they really want it or not. The second thing that says to me is that palliative care is not really a priority for the Government. If you cannot even produce the plan to improve palliative care, which was originally going to happen this year, until some time next year, with no specific date attached to it, heaven knows what your priority will be when actually delivering the services that people require. My sense is that, if the plan will not come out until next year, we will not see improved services even in this Parliament. In that case, there is no meaningful choice. On that basis, we should not proceed with this Bill.

[Baroness Grey-Thompson (CB)]

My Lords, I have added my name to Amendments 82 and 83A, in the name of the noble Lord, Lord Polak. I note that Amendment 83, which was tabled by my noble friend Lady Murphy and the noble Baroness, Lady Noakes, has been withdrawn. It would have extended the period of eligibility from six to 12 months for neurological conditions.

I added my name to these two amendments because it is important to have real clarity on what we mean by a six-month diagnosis, as well as to have specialist certification by an independent consultant. I added my name because Professor Paddy Stone, who is the former head of Marie Curie palliative care research department at UCL, said there is no reliable way to identify patients with a six to 12-month diagnosis and no method that would provide an adequate safeguard. We have to remember that no royal college supports this Bill or thinks that the safeguards in it are good enough.

Amendments 97 and 98 would tidy up the language in the Bill. This is quite a minor point, but “person with a disability” does not exist in law. It is used interchangeably in the Bill and society, but “with a disability” suggests that my impairment is something I can pick up or put down at will, which I cannot. To show some understanding of what disabled people experience, the Bill should use the language of both the DDA and the Equality Act, and should recognise that the social model of disability exists. I do not know whether the drafting was a refutation of the social model, or perhaps a drafting mistake, but it shows a lack of connection to disabled people and deaf and disabled people’s organisations. We are told that language changes all the time—it really does not. Different language may be used around the world, but this is British law, and we should use the words that are in Acts that already exist.

Last week, the noble Lord, Lord Harper, mentioned things we think we need to fix but never get round to, and I thought of an example at the time. The DDA—I sat on the National Disability Council with the noble Lord, Lord Shinkwin—said 31 years ago that taxis in this country should be wheelchair accessible. Thirty-one years later, we have still not sorted it. I have tabled an amendment to the English Devolution and Community Empowerment Bill, for next week, to fix that. Given that we have had to wait 31 years for taxis to be accessible for disabled people, can noble Lords not understand why disabled people fear this Bill?

Amendment 106 in the name of the noble Lord, Lord Hunt of Kings Heath, and my noble friend Lady O’Loan looks for clarity on that six-month diagnosis. We are constantly told there is nothing to worry about, but those are easy soundbites. The Bill is caught between two competing policies: trying to ensure safety versus personal choice. The state has a duty to ensure that those choices are sufficiently informed and based on accurate medical assessment. Building in an independent prognosis would recognise that, in a life-ending law, the margin for error must be minimal and oversight must be robust. It would send a clear signal that assisted dying is exceptional and that those who seek it must face rigorous, medically sound scrutiny that reinforces public trust and protection for vulnerable individuals.

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[Baroness Merron (Lab)]

We are discussing a group of amendments about the definition of terminal illness. I have already placed a letter in the Library of the House outlining all the work in respect of palliative care. I have also made reference to the modern service framework.

[Lord Harper (Con)]

Having listened to my noble friend Lord Moylan respond to what the Minister said, I confess to being a little confused. The Minister seemed to be saying, in her comments about some of the amendments in this group, that the problem with having a list of conditions is that you could quite often have a terminal diagnosis as the result of a group of conditions, circumstances or illnesses. In my reading, the Bill does not say that. The Bill says:

“For the purposes of this Act, a person is terminally ill if … (a) the person has an inevitably progressive illness or disease”—


not lots of them; one—

“which cannot be reversed by treatment, and … (b) the person’s death in consequence of that illness or disease can reasonably be expected within six months”.

I carefully read the amendment, which talks about a specified list of conditions. Incidentally, coming back to the point made by the noble Lord, Lord Markham, twice as many members of the public support that approach than a terminal illness. The Minister’s answer to my noble friend Lord Moylan seemed to be disagreeing with what is actually in the Bill, so I am now more confused than I was before she got to her feet. Can she clear that up?

[Baroness Merron (Lab)]

I am sorry the noble Lord is confused. I know that my noble and learned friend Lord Falconer will be pleased to assist him with any confusion that there is in the case of this amendment.

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[Lord Harper (Con)]

I deliberately did not intervene on the noble and learned Lord earlier, because he dealt with the point and I thought that we had spent enough time on it. He has now just made it even more confusing. I just want to make sure that I have this right. The Minister appeared to be saying that you could have a set of conditions, none of which was fatal but the combination of them was terminal, and that that would trigger the circumstance. I said that that was not what the Bill said. The noble Lord, Lord Pannick, pointed out that if you had a range of conditions, all of which were fatal, that would count—I do not dispute that at all. The noble and learned Lord seems to be saying that if someone has a condition that is not currently recognised as terminal, they would qualify under the Bill. Did I hear him correctly or have I got that wrong?

[Lord Falconer of Thoroton (Lab)]

The noble Lord has got that wrong. I was saying that, for example, the medical profession could easily recognise that HIV/AIDS is fatal. It would have recognised that at a particular time and that would be a medical diagnosis. The effect of the amendment in the name of the noble Lord, Lord Moylan, would be that you cannot rely on HIV/AIDS as a basis for saying that you have an inevitably progressive illness or disease that cannot be reversed by treatment, which was the position for a long time, unless the state has put it into a list of regulations. I am saying that it should be the doctor’s determination of whether theTo go on with the questions that have been raised, the noble Lord, Lord Moylan, asked what the paragraph under Clause 2(4) means. It means that the fact that you have a disability or a mental disorder that cannot justify a terminal illness does not mean that you cannot nevertheless qualify because you do have a terminal illness that satisfies the requirement of Clause 2(1).

On the question of congenital disorder and Amendment 105, if the position is that you are suffering from a progressive illness or disease that is likely to end your life within six months, I think that you should be entitled to an assisted death. My noble friend Lord Shamash referred to such a condition in relation to his cousin; I am not in favour of excluding a particular category in relation to that.

Everybody in the House has enormous respect for the noble Lord, Lord Shinkwin, and I completely accept the proposition that those of us who are not disabled have to listen very carefully to those who are. It is true that, in the other place, Marie Tidball, who is a Member of Parliament, supported the Bill and was in particular influenced by the fact that amendments were made to it that ensured that a disability group would monitor the performance of the Bill. However, I completely accept the proposition that the noble Lord, Lord Shinkwin, makes that we have to listen as hard as we can because it is not part of our experience. That proposition applies not just to this Bill but to a whole range of Bills.

On two further points, first, a number of noble Lords made the point about developments in medicine. It is true that medicine develops all the time; one needs to keep up with those developments and the doctors making the diagnosis have to have those in mind. But the fact that there are going to be developments in the future does not prevent the position from being that at a particular moment in time—HIV/AIDS is the obvious example—because those developments have not yet occurred, those diseases are going to be fatal. The fact that something may occur in the future does not prevent the judgment from having to be made.

Finally, on Amendments 97 and 98, proposed by the noble Baroness, Lady Grey-Thompson, for understandable reasons she proposes effectively a shift in the wording to be much more respectful of disabled people. I can see no reason why we should not make that amendment.

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I therefore support the amendment the noble and learned Lord, Lord Falconer, is proposing, and the amendment to it. It is a reasonable safeguard for the very vulnerable people—often young women—who suffer from anorexia, which is an appalling disease, and I urge the Committee to support it.

[Lord Harper (Con)]

I am going to limit my remarks to a couple of process points, which think are important. I have listened very carefully to those with considerable expertise on the clinical issues raised by these amendments, and I just want to cover these points.

The noble Baroness, Lady Parminter, has just made the point that this loophole has been well understood for some time and was not dealt with in the House of Commons, although it could have been. I gently say, because there is some frustration from the supporters of this Bill about the time taken to scrutinise it, in repeating what I have said before—it is part of the reason why noble Lords are having to table significant amendments and debate this Bill at length—that there are considerable gaps in the Bill that have been known for some time and have not previously been dealt with. The noble Baroness, Lady Parminter, was exactly right to point out that it is this House that will have delivered an amendment to make that considerable improvement, which has been argued for by a number of people for some time. We are doing good work here, whatever people may think of the principle of the Bill, in improving the drafting.

The noble and learned Lord, Lord Falconer, referred at the beginning to whether the Committee would accept this change to the Bill. I make a clear distinction here—and I am going to be very supportive of his position—between this debate and the earlier debate on what he described as drafting amendments. Many of us considered that they were not drafting amendments but quite significant changes, and we made it clear that, if he pressed them, we would oppose him. In this case, his Amendment 87, as amended by Amendment 87A, clearly resolves one issue in the Bill, and that is welcome. I would certainly have no objection if the noble and learned Lord pressed the amendment, and I hope the Committee would accept it, because there is general agreement that it would improve the Bill.

Finally, as has been said by the noble Baronesses, Lady Parminter and Lady Berger, the noble and learned Lord’s amendment fixes one problem. I am not at all an expert in this area, but I understand from those who are that it deals with the issue of anorexia but leaves other eating disorders such as bulimia unresolved, as the noble Baroness, Lady Berger, said. There are other amendments in this group that raise those issues.

I hope for two things. When the Minister responds, I hope that she can commit at a later stage to setting out that, in the view of the Government and the Department of Health, with regard to the span of eating disorders, the Bill will actually deal with them when we have made some more progress on it. That is a factual point, not an expression of a policy position. When the noble and learned Lord responds, as well as pressing Amendment 87 as amended by Amendment 87A, I hope that he can say something positive about what work he will conduct with the Department of Health on drafting some later amendments on Report to deal with the other eating disorders that have been explained, so that we can make sure that there are no loopholes covering any of these eating disorders. As we have heard, they affect a very significant number of people, particularly younger people, and particularly younger women. I want to make sure that we properly protect them as this Bill proceeds through your Lordships’ House.

[Lord Carlile of Berriew (CB)]

My Lords, I signed the noble and learned Lord’s amendment, and I thank him very much for introducing it. In my view, it is a very important amendment. Noble Lords who have seen a serious eating disorder at close quarters will know that it not only disturbs the person who suffers from that eating disorder, but dramatically affects everybody around them. It is all too easy to be fatalistic about it, not challenge it and try to make one’s way through it.

It is a condition that, in my view, produces three possible outcomes. One, in all too many cases, as we have heard, is suicide. For some, indeed in quite a number of cases, there is recovery. However, perhaps most people who suffer from anorexia, particularly at a young age, learn to live with it. It is that living with it that, in my view, is the most important reason for ensuring that it plays no part in the outcomes envisaged in this Bill. For everybody who suffers from an eating disorder—this perhaps particularly needs to be said to teenagers who suffer from eating disorders, whether boys or girls—the important thing is that there is hope of some kind of good recovery, even if it is just learning to live with it. Something that offers such hope should not, in my view, be part of anything remotely resembling this Bill.

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[Lord Falconer of Thoroton (Lab)]

First, I detect that the mood of the Committee is that I should put my Amendment 87 into the Bill, but subject to the amendment tabled by the noble and learned Baroness, Lady Scotland, and by the noble Baroness, Lady Berger, so I am minded, unless anybody indicates to the contrary, to let that process go ahead. I accept that, in putting it in, there are those who would like to build on it on Report, but I think we should put it in now.

I will deal very quickly with the other amendments in the group. Amendment 88, tabled by the noble Baroness, Lady Grey-Thompson, would leave out “solely”.

[Lord Harper (Con)]

I completely agree with the noble and learned Lord, and I would be happy for the amendment to be made, but he said that he recognises that there are those who would want to build on it on Report. Can he cover the point I made? Obviously, he will have the support of draftspeople and policy officials from the department to help him craft something. Does he recognise that there is still a gap in dealing with some other eating disorders? Will he bring forward some amendments or will he expect those to come from others?

[Lord Falconer of Thoroton (Lab)]

Two groups of eating disorders were identified. First, the noble Baroness, Lady Finlay of Llandaff, identified people who eat only one particular thing. I myself have experience of fruitarians and the consequences of eating only fruit—it may be very bad. Those who have a limited, particular intake are covered by Amendment 87.

A separate group, the bulimic group, gives rise to different sorts of problems. I will consider the position of bulimics, but I do not want to create any expectation that that would lead me to table any further amendments. It may be that other people will table them in the light of what I have said, in which case I will of course consider them, but I think that might be a slightly different category.

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[Lord Moylan (Con)]

My Lords, I have Amendment 235 in this group and I shall speak briefly to it.

I shall probably be mocked for naivety. We have had some 30 years of the Mental Capacity Act. The concept of capacity has been developed in great detail, in a very specialist way. As my noble friend Lord Sandhurst said, the lawyers understand it but perhaps others do not. I am sure that he meant to say that the psychiatrists understand it too, because they have to work with it regularly. However, he is right that ordinary people do not have to engage very much with the Mental Capacity Act. I am one of those ordinary people. I bring no expertise as a lawyer or as a psychiatrist in relation to the Mental Capacity Act. I am simply thinking in this amendment of how ordinary people would regard it if they saw people who were suffering with learning disabilities, autism or mental disorders being led into assisted dying, opting for assisted dying and having that facilitated.

I have no doubt that there is some poll commissioned by Dignity in Dying which says that they would widely applaud it and that it would be a very popular thing, but I do not believe that it is true when actual cases are presented to people and they see them happening. I think that they would say that it is simply wrong that people who have these conditions should be able to access assisted dying. So my Amendment 235 takes the conditions that are specified in Clause 22: learning disability, mental disorder, autism or experiencing substantial difficulty in understanding the processes or information that is relevant. In Clause 22, we say to these people, “We’re going to help you with an independent advocate”. My Amendment 235 says that those people will not be admissible to the process, and I do it by saying that any preliminary declaration they make will be void. Under the terms of the Bill, they will not be able to proceed further.

That is what a large number of ordinary people would expect. They would want us to protect them and the best way of protecting them is to say no. I know that this offends the notion of autonomy held by the noble and learned Lord, Lord Falconer, which he is trying to adjust for these people. It might strike those who spend their lives working at the concept of capacity as being rather naive and backward of me. However, I think that it is what most people want and the safest course. If the Bill is to be implemented, it can be amended in the future if people want, but at this stage it is by far the safest course.

So I recommend Amendment 235, which would terminate this debate by making it impossible for people with those conditions to proceed. Consequently, Clause 22 becomes unnecessary. That is why I have tabled the Clause 22 stand part notice: not because I have an objection to Clause 22 in some complex way but simply because it becomes unnecessary in the Bill. It is otiose.

[Lord Harper (Con)]

My Lords, I will make a few points. The first is in response to the perfectly fair point from the noble Lord, Lord Markham, at the beginning about the difference between this debate and the earlier debate we had. I think there is a very clear distinction. The earlier debate was a very wide-ranging one about capacity. Because of that debate, we now have some very specific amendments to look at, which seek to tackle some of the issues that were thrown up in that debate. The noble Lord, Lord Deben, set out why this is important: the practitioners in this area—the professionals of various types who will be involved in implementing this regime if the Bill becomes law—have been saying publicly, as well as to us specifically, that they want clarity about decision-making, so that they are clear about the legal framework that applies to them and the decision-making regime. That is very important.

I will not speak to all the amendments in the group; I will focus on a couple of points. We have already talked about the capacity issues around people with deprivation of liberty orders. The noble and learned Lord, Lord Falconer, spoke about that debate and the fact that he has—rightly—written to noble Lords setting out his intention to bring forward those amendments on Report. We have not yet seen the detail of those. I have a couple of questions, if he is able to furnish us with that information. I know he said that he was in the process of talking to officials and lawyers about that, but can he give us an indication about whether the protections he is looking at will be something like a yellow flag or a red flag? In other words, would there be a prohibition on someone who has recently been under a deprivation of liberty order so that they would not be able to qualify under the Bill? Also, can he give us confirmation that we would actually have the protections in the Bill, or would they all be left to codes of practice or guidance? Without having done the detailed drafting, if he could give us an indication of his direction of travel, that would be very helpful.

A number of noble Lords have pointed out that there is some confusion. I think that both the noble and learned Lord and the Chief Medical Officer have both said on occasion that there is a sliding scale of capacity in the Mental Capacity Act and that there has to be a higher level of decision-making capacity for more important decisions. I think Chris Whitty had to row back from that in a letter that he sent, as my noble friend Lady Berridge said. So can the noble and learned Lord set out his understanding of the position under the MCA for these sorts of decisions?

Legal experts have asserted that it is factually incorrect in relation to the Mental Capacity Act. Alex Ruck Keene KC, whom my noble friend Lord Sandhurst mentioned as being part of the CLADD group, has confirmed that, while common law may once have suggested a sliding scale, the MCA itself contains no such requirement. Indeed, that is one of the things that the amendment that they have drafted deals with. Even if there is some case law on some MCA decisions that indicates a sliding scale, there cannot be any case law that is relevant to these decisions, because it has not previously been possible for decisions about assisted suicide to have been lawfully taken. There is no case law that specifically pertains to this gravity of decision. It would be helpful to understand what the noble and learned Lord thinks is the position.

I think this is a question that the Minister is capable or answering—or, rather, able to answer—without straying into making a policy decision. Sorry, I changed my word—I was not trying to imply something about her competence at making the thing; it was more about whether she should or should not. What is the Government’s understanding of the MCA, given that the Chief Medical Officer set out one thing in oral evidence and then corrected it? It would be helpful to know what the Government’s definitive view is on this issue of whether there is or is not a sliding scale. That is a factual question that does not go to an opinion about this legislation. It would be helpful for us to know what it is.

I have a final question in this area, and then I will make one final point. One of the things that Amendment 115 is also trying to deal with is that under the Mental Capacity Act there is a support principle that effectively becomes a duty to assist. It mandates that:

“A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success”.


The danger is that the MCA was designed to help people make decisions about things such as finances, care and housing, where support is plainly benevolent. Applying the same duty to a decision to end one’s life is qualitatively different—the noble Viscount, Lord Colville, mentioned the point about how oppressive it can be if you are repeatedly asked whether you want something with this type of decision—and therefore I do not think it is appropriate. I would be interested to know whether the noble and learned Lord accepts that Section 1(3) of the MCA is effectively a statutory duty for doctors to support patients in making this decision, and, if so, whether that balance is accurate.

My final point, for a couple of reasons, is on Amendment 119 in the names of my friends, the noble Baronesses, Lady Grey-Thompson and Lady Hollins, which deals with the mental capacity assessments for people with learning disabilities. The noble Baronesses and the right reverend Prelate the Bishop of Newcastle on behalf of her colleague, the right reverend Prelate the Bishop of Lincoln, powerfully set out their concerns about whether the MCA properly tests capacity for people with learning disabilities making an irreversible decision of this kind. They set out the concerns very well, so I will not repeat them.

I emphasise one danger I can see, which is a point that one or two of them made and that my noble friend Lord Shinkwin made in his earlier contribution, about expectations. We know, sadly, that a number of professionals involved in delivering healthcare have expectations about people with learning disabilities that are not what we would expect. We should all have very high expectations of the quality of life that people with learning disabilities can have. But, just to pick one example, we know how many people with learning disabilities were treated during the Covid pandemic, when many of them were given “do not resuscitate” orders without their consent because medical professionals had taken a view about their quality of life without asking them.

I am afraid I am not prepared to just leave it to medical professionals and their professional expertise to properly safeguard those people with learning disabilities. I think we know enough from experience to know that we should properly protect people with learning disabilities, recognising that they often have capacity and are able to make their own decisions, but that they need extra protection to make sure that those decisions are the right ones. If we do not do that, knowing what we know, we will be failing them.

Amendment 119 is a very valuable one and commends itself to your Lordships’ House. It would do something that I have said on previous occasions is our job: to look out for those without voices, who are more vulnerable and who need our protection. That is not a duty that we should take lightly; it is one that we all have, and this amendment means we would be fulfilling that duty in a very clear and powerful way.

[Baroness Coffey (Con)]

My Lords, I have tabled Amendment 110, which is about trying to understand which version of the Mental Capacity Act we are dealing with. Section 2 of the Mental Capacity (Amendment) Act 2019 would replace what was in the 2005 Act. It has not yet been implemented. I do not know the reason for that. It would be useful to hear from the Minister to get an understanding. This seems to be about how liberty can be removed from somebody—I appreciate that we have had a bit of a conversation already about deprivation of liberty—to have life-sustaining treatment applied. I am trying to understand what would happen under this Act if the life-sustaining treatment was to try to prevent an assisted suicide. I would like to understand what is happening with this part of the law.

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[Baroness in Waiting/Government Whip (Baroness Taylor of Stevenage) (Lab)]

My Lords, I beg to move that the House be now resumed.

[Lord Harper (Con)]

My Lords, before the Committee decides on that question, I put two points on the record. First, we are finishing slightly early. I make the point that some of us would have been perfectly happy to continue to six o’clock to make some more progress, so this is the Government’s decision. However, I understand that we had some confusion on the adjourned group. I flag to the Chief Whip that, when we have an adjourned group and we have a list, perhaps the list could be published in some way so that there is clarity before we start proceedings about who was and was not here at the beginning of the debate on the group. That would avoid the problem we had this morning.

The other issue is that, if we had started the group today, because of the lateness of the hour and the necessity for a significant number of Members to leave early because of travel arrangements to get home, a significant number of people who might have wished to contribute to the debate would not have been able to, even if we had adjourned and continued it next week. Given that the Government Chief Whip said that it was okay for Members to leave early because of those travel situations, can he give some thought to whether, if we start a group to make progress and then adjourn, those Members could still be able to participate in the debate on the group when we resume on the following occasion? I recognise that that is a variation in procedure, but it is about trying to work with the unusual circumstances we face to make sure that people can participate, but also making the best use of the time while complying with the House’s ruling that we make more time available to make progress on the Bill.

[Baroness Taylor of Stevenage (Lab)]

I shall refer the noble Lord’s comments to the usual channels.