Terminally Ill Adults (End of Life) Bill

Lord Deben Excerpts

Committee stage
Friday 6th February 2026 Lords Chamber

[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.

[Lord Deben (Con)]

My Lords, I wanted to say, as I have several times pointed out, that one reason why this Bill has taken so long is that the proponents have not been willing to make some of the changes that many of us feel would be perfectly sensible. I therefore thank the noble and learned Lord for this amendment. I think he must also agree that the debate that has followed has brought to the surface a number of issues that need to be considered, and no doubt will be when we get to Report.

However, the reason I rise is just to say to him that I find it pretty unacceptable, when I have sat through almost every moment on this Bill and have learned so much from the discussions that have taken place, for him to suggest that somehow or other we ought to do it more quickly. The fact is that this is a very badly produced Bill. It is opposed by every single organisation representing the people who have to actually do it and by every single representative of disabled people. If this House is not here to go through the details that others have raised outside, I really do wonder what the House of Lords is supposed to be. The noble and learned Lord ought to give some of us credit for the fact that, whatever we think about the Bill, we want to make it as good as it can be. That means we have to discuss it properly.

[Lord Markham (Con)]

I will make just one point. My noble friend mentioned that this was opposed by every one of the groups. Again, we took evidence from all these groups. The position is that they are neutral on it, because their memberships are split on it. The Royal College of Nursing and the Royal College of General Practitioners are neutral, so it is not right to say that they oppose it. At the same time, it is not right to say that they support it. I have heard noble Lords say a number of times that there are no groups that support it but, at the same time, you can say that there are no groups that oppose it. The fact is that they all take a neutral view because their memberships are split.

[Lord Deben (Con)]

The fact is that none of the organisations that will have to carry this through have no objections to the Bill. They have asked us to try to change the Bill so that they can do their job. That is what I was trying to say. Some have a principled opposition, but most want a better Bill. If we are going to have a better Bill, that is what we are here to do. I object to the fact that my time is being taken up with trying to help and then I am told that somehow or other it is filibustering.

[Baroness Berger (Lab)]

I just want to clarify that many of these organisations—including five royal colleges, the British Association of Social Workers and all the organisations for and on behalf of disabled people—are neutral on the principle of assisted death, but no external organisation will attest to the safety of the legislation we are discussing today and on previous days. I think that should be of concern to us all.

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[Lord Goodman of Wycombe (Con)]

My Lords, I will speak to my Amendment 113, which concerns a matter that has not previously been raised in the context of mental capacity, or I suspect my amendment would have been grouped earlier; it is about codes of practice. To explain it, I ask any noble Lord interested to turn to Clause 39(2) of the Bill, where they will find what it has to say about codes of practice, which is this:

“The Secretary of State may issue one or more codes of practice in connection with any matters relating to the operation of this Act not required under subsection (1) as the Secretary of State considers appropriate”.


It is a very broad provision concerning any codes of practice that might arise as a consequence of the Bill.

The Delegated Powers Committee, on which I sit, was very critical of this provision, and said the following:

“It may be that clause 39(2) is intended to be a ‘sweep up’ power in case the subject matter covered by the duty in clause 39(1) has missed something. However, such a wide power, with the potential to affect the extent of the legal risk incurred by those carrying out functions in a highly sensitive area of professional practice, should not be conferred as a ‘nice to have’ and requires a compelling justification … The subject matter of codes of practice should be set out on the face of the Bill to the degree necessary for Parliament to understand the subject matter and who might be affected and we therefore recommend that the power in clause 39(2) is removed from the Bill”.


My amendment does not go quite so far as the committee report suggested, but it does say that any code of practice issued under the Mental Capacity Act should not be issued unless

“a draft of the code has been laid by a Minister … before both Houses of Parliament, having engaged in public consultation, and … that the draft has been approved by a resolution of each House of Parliament”.

I therefore ask the sponsor of the Bill, in responding to this amendment, to be as helpful to the Committee today as he indicated he would be when he gave evidence on all matters, except approved substances, to which we will return in due course. I see that he is nodding, and I look forward to his response.

[Lord Deben (Con)]

My Lords, I am hoping that I am going to help the noble and learned Lord, Lord Falconer, and I am sure he will be pleased with that help. We have been discussing some fundamental issues of interest to the people who are going to have to carry this Bill through. Therefore, I recommend three very simple things to the noble and learned Lord.

First, the sooner we know what the noble and learned Lord’s amendments are going to be, the very much better it will be. It would allow some of us to help—certainly not me, but the experts—to make sure they are adequate. Secondly, I support the noble and learned Baroness, Lady Butler-Sloss, in her demand that we should know as much as possible in advance. Thirdly—and the gravamen of my points—if you talk to people outside, many of them have no idea about the details of the Bill and have a general view either in favour or against it. However, when you talk to people who have some real understanding of the Bill, the issues which concern them most are those where they feel there is not adequate clarity, especially for the medics and others who are going to be involved.

This debate has been different, if I may say to the noble and learned Lord, from previous debates on this area. It has concentrated on the lack of clarity around what we really mean by competence. We have made the distinction between the competence that is satisfactory to make important but immediate decisions that can be reversed and the competence necessary to make fundamental decisions, where a person needs a longer-term ability.

It therefore seems to me that it would be advantageous to the noble and learned Lord’s whole cause if he could take this very seriously. If he can find a proper answer, which satisfies the sensible things that have been said, it will go very much further—this is a rather delicate sentence, which I hope the noble and learned Lord will not take amiss—to repair the impression that every amendment is shoved off. These are not amendments to treat with anything but the very greatest of care.

[Lord Sandhurst (Con)]

My Lords, I will speak to Amendment 581A. It reads:

“In the event that the assisting professional has doubts as to the person’s capacity for the purposes of subsection (5)(a), the assisting professional … must take steps to assess the person’s capacity, including (if they are not a person meeting the requirements under section 12(6)(b)) seeking the advice of such a person, and … may not proceed further until, with the benefit of such advice as is received under paragraph (a), they have satisfied themselves that the person has capacity to make the decision to end their own life”.


This is aimed at the very moment when the applicant, if I can use that neutral term, is about to be provided with the substance with which life will be ended. It is the very end of the process. The assisting professional is there. The amendment would require that, if they had doubts as to that individual’s capacity, they sought advice from a practising, registered psychiatrist. What could be objectionable about that? Why would it not be necessary, if the assisting professional had doubts? Should it not be mandatory? We know that people’s capacity can fluctuate if they have certain conditions. I see the noble and learned Lord nod as I say that. In this situation, when the final decision of whether to end life is being made, it is critical that the assisting professional has confidence, based on proper knowledge, that the applicant has the necessary capacity.

This amendment, together with a fair number of others that I have put forward, was put to me by CLADD, the Complex Life and Death Decisions group at King’s College London. Others have mentioned the group today, but I think it necessary, because I shall refer to it again, to explain who it is and what it does. The group has substantial expertise in a range of relevant disciplines. It is concerned that any Bill such as this is drafted in the best way to ensure that it operates in practice without avoidable dangers.

Because this is the first of its suggested amendments, I will say a little more about them. The group comprises psychiatrists, psychologists, lawyers and social scientists. They are serious academics who come at this without side; they are simply anxious that those involved at the sharp end have the best framework in which to operate. Its chair is Professor Bobby Duffy, professor of public policy and director of the Policy Institute. Other members include: Professor Gareth Owen, professor of psychological medicine, ethics and law and an honorary consultant psychiatrist at the prestigious South London and Maudsley hospital; Alexandra Pollitt, its director of research who specialises in mental health policy and public health; Professor Ruck Keene, an honorary King’s Counsel based in the Institute of Psychiatry, Psychology and Neuroscience at the Dickson Poon School of Law and a Wellcome research fellow researching mental capacity law, mental health law and disability law; Professor Katherine Sleeman, the Laing Galazka Chair in Palliative Care based at the Cicely Saunders Institute at KCL; a director of engagement, Suzanne Hall; and an NIHR doctoral fellow, Dr Liam Gabb.

They are therefore a range of absolutely top-class professionals who know about the detail. They have real, practical experience and academic expertise, and it is really important that their concerns, which I shall express on this occasion and elsewhere, are registered as being serious. They are not from people who are saying, “Don’t have such a Bill at all”; they are saying, and this is really important, “If we are going to embark on this course of helping people to die with medical assistance”—I will not use pejorative terms—“then it must be done properly”.

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[Baroness Hayter of Kentish Town (Lab)]

My Lords, I was not able to be here this morning; many noble Lords will know that I spend much of the mornings, most days, in a care home—very often two or three times a day. My husband is being brilliantly looked after in one of the most brilliant care homes. I should have got their names this morning and I could have given them all a shout-out, but I will simply say that Bridgeside Lodge is one of the most amazing places for looking after people.

I must say to the noble Lord who moved this: I do not know whether he spends as much time in care homes as I do, but they do everything possible to keep their residents alive, well, well fed, replenished and amused, and to give them a quality of life that I think would be appreciated by everyone. But, of course, a lot of people in care homes are very ill, and some of them will be exactly the sort of people who may well need this.

It is a bit condescending to think that all those people are vulnerable. Most people in the care home do not know what I do. They think that I am a doctor sometimes, because I am known as Dr Hayter—I have a PhD, but I am not a doctor. But one of them discovered the other day and grabbed hold of me and said, “You won’t let them stop it, will you?” This was a very senior medical physicist, a professor of physics at UCL. I will give a shout-out to him by name: Andrew Todd-Pokropek. These are people in care homes with capacity who know exactly what they are doing and are urging me and others in your Lordships’ House to get this Bill through. Some of them will know that they are exactly the sort of people who may well want to make use of it, although not now.

The idea that the doctors looking after them, who are specialists in geriatric care, are somehow incompetent and that we should somehow need an extra layer of safeguards, is not living in the real world. So many people at the end of their lives will be in care homes, hospitals or hospices, and the idea that we would almost exclude them from the normal way of this Bill seems to me extraordinary. I hope that the noble Lord and others will think very carefully before saying that the exact cohort who are already ill should somehow be excluded from the normal trail of this Bill, because that would really be inappropriate. I urge him to withdraw his amendment and think very carefully before he pushes it again.

[Lord Deben (Con)]

I have some sympathy with the noble Baroness. She is very fortunate with the care home her husband is in, as is he. For many years, I represented the constituency that had perhaps the largest number of care homes in the country. Suffolk Coastal is an elegant area, and with towns such as Southwold, Aldeburgh and Felixstowe, it is a natural place for them. I would, of course, visit them on a regular basis, as indeed did my wife.

I have to say to the noble Baroness that the difference between the best and the worst is very considerable indeed. In grave humour, if I displeased my children, they would mention the worst one as the one where I might be placed. I put it like that because they recognised it, too: the very considerable difference. The reason why I think the amendment from the noble Lord, Lord Blencathra, so important is precisely because it does not exclude people. It says that the conditions of care homes are such that it is important to protect people rather differently, because of our experience. Some of the care homes in my former constituency are absolutely wonderful, with really good care by really good clinicians. However, I cannot say that that is universal, so I think we should have some protection—and this seems to me to be very sensible and it does not exclude anybody.

The noble Baroness suggested that this would exclude people, but this is a proposal that would protect those who are less happily off than the noble Baroness and her husband. It is very generous of her to share her current concerns: mine are not as current, but they are very much wider and from a much longer period. I looked again at the devastating effect of Covid, which came after my membership of the House of Commons, because of connections that one had—and that has made me even stronger in my belief that we should be especially concerned for those in care homes, not because of the best or even the average, but because there are many where people would otherwise be vulnerable.

[Baroness O'Loan (CB)]

My Lords, I will speak to Amendment 112 in the name of the noble Baroness, Lady Eaton, who cannot be with us today. I have put my name to this amendment, and Amendment 111.

Although this is a small group, it addresses a very important matter. I endorse what the noble Lord, Lord Deben, said. I extend my sympathy to the noble Baroness, Lady Hayter, because I know what it is like to have someone in a care home. In my case it was someone who had dementia for years and was in a very deteriorating situation. It is profoundly difficult. However, there are huge variations in the standards in these homes. Because of that, this is trying to introduce an additional safeguard for the situation where all is not as well as it might be.

For example, in the care homes during Covid, people were put under DNRs as a matter of process by the care homes. It should not have happened, but it did happen. That was the result. If you are in a care home and fall down the stairs, you may have a broken hip and all sorts of consequential problems. Ambulances, certainly in the part of the country where my mother was, do not attend care homes for at least four hours. They are not priorities. So there are difficulties with care homes.

Importantly, it is about care homes and nursing homes. The residents of care homes and nursing homes often have very few visitors. Some of them have family who come to them, but many of them do not. Another experience I have had is that they latch on to you and want you to visit them, too, because they are lonely. They have little or no contact outside the home and can become very isolated and alone, although they are living in a community within the care home in which they must live. The British Geriatrics Society gave evidence to the Select Committee emphasising that robust specialist assessment is essential where decisions carry finality—and there is no more final decision than this.

Amendment 111 would therefore require a heightened evidential standard, demonstrable through a specialist clinical assessment, for residents of registered care or nursing homes. One in three people with dementia in the UK is never diagnosed. Alzheimer’s Research UK told us that the dementia diagnosis rate in England was 66.3% in December 2025. Dementia incidence is over 20% higher among Black adults compared with the UK average.

The noble and learned Lord, Lord Falconer, has agreed that it is necessary to make provision for those who have been made subject to a DoL. He said last week that he was preparing the amendments, for those who are between 18 and 25 and those subject to DoLs, and that he is considering what additional assessment could apply. We have talked about that a little. Age UK confirms that 70% of care and nursing home residents suffer from cognitive impairment. They have a heightened risk of delirium and confusion arising from infection, dehydration and medication effects. Compassion in Care, based on more than 1,000 calls from care workers and family members, found that the predominant concern raised by both groups was the issue of capacity, with 97% of helpline callers raising the issue of fluctuating cognitive capacity of care home residents.

The issue of UTIs was raised in 97% of calls. The issue of lack of fluids was raised in 89% of calls. Lack of fluids is a very common problem, because people with cognitive impairment or a form of dementia may not receive sufficient hydration. When a drink is provided, they may forget it. My mother used to welcome the drink and get all excited that a cup of tea had been delivered to her, then just ignore it. She would not drink it unless we coaxed her repeatedly to do so. That is not an uncommon experience. Also, the elderly are very susceptible to UTIs, which require antibiotic treatment. Very often, the UTI is recognised first by the visitor, not by the care home staff, because the visitor can see the level of confusion which is consuming the person who is in distress.

A significant proportion of people who are living with dementia or cognitive impairments are not diagnosed until the later stages of the disease. Standard mental capacity assessments conducted by non-clinical professionals often fail to take these factors into account when seeking to establish capacity. The high proportion of undiagnosed dementia among care home residents presents a margin of error that, I would respectfully suggest to your Lordships, no legislature can reasonably and responsibly ignore.

To address the problems identified, Amendment 111 would require a higher evidential standard. Amendment 112 would provide for residents of registered care and nursing homes. The explanatory statement states:

“This amendment provides that, for residents of registered care or nursing homes, capacity may only be established following (1) a specialist clinical assessment ruling out reversible causes of fluctuating or impaired capacity, and (2) a capacity determination conducted by a consultant psychiatrist with relevant expertise. It further clarifies that an MCA assessment alone is insufficient given the heightened medical and institutional vulnerability to unstable capacity in care home settings”.

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[Baroness Merron (Lab)]

My Lords, I am most grateful to all noble Lords who have contributed to this debate on assessing capacity in care homes. As noble Lords will be aware, my remarks will be limited to areas where the Government have assessed that there may be major technical or operational workability concerns.

I say to the noble Lord, Lord Blencathra, that that will include matters relating to the ECHR. The noble Lord, Lord Carlile, already picked that up in his own characteristic way, but I gently say to the noble Lord, Lord Blencathra—I know he is aware of this because of his experience—that Government Ministers have a duty to advise your Lordships’ House of implications. As I explained in the last group, decisions on the ECHR are ultimately for Parliament. I am sorry to frustrate him with repetition, but it is appropriate to the relevant considerations. I will just ask him not to listen if he feels it is very irritating.

This may be helpful to the noble Lord, Lord Wolfson, as well. Amendments 112 and 111, in the name of the noble Baroness, Lady Eaton, spoken to by the noble Baroness, Lady O’Loan, aim to strengthen safeguards for care and nursing home residents by ensuring that capacity in these cases is established through specialist clinical assessment and that capacity assessments seek to rule out reversible medical causes of impaired or fluctuating capacity. The Government consider that Amendment 111 may be inconsistent with the Mental Capacity Act’s assessment framework, which does not require enhanced assessment for certain groups. I dealt with this in more detail in the last group. By requiring expert psychiatric input before capacity is confirmed, Amendment 112 could create inconsistency with the MCA’s presumption of capacity and the principle of proportionate, decision-specific assessments.

Amendment 110A, tabled by the noble Lord, Lord Blencathra, would affect care home and nursing home residents’ capacity assessments and require expert psychiatric input before capacity is confirmed. Again, this could create inconsistency with the MCA’s presumption of capacity and the principle of proportionate, decision-specific assessments.

If passed, each of these amendments would lead to a difference in treatment between care home and nursing home residents and all other citizens in assessments for assisted dying. That difference in treatment—the noble Lord, Lord Blencathra, may wish to close his ears at this point—could give rise to challenge under the ECHR, particularly Article 8, which refers to respect for private and family life, and Article 14, which concerns the prohibition of discrimination. The differences in treatment would need to be justified, necessary and proportionate.

[Lord Deben (Con)]

If the Committee decided that the conditions in a care home were such that it would be better to have a system there that was slightly different from the one for those who were not in a care home, surely that is justification enough. As the Minister knows, I am entirely in favour of the ECHR and disagree very strongly with my noble friend, but this seems a bit of a red herring, frankly. The fact of the matter is that, if this was the policy that was put forward, I think it very unlikely that anyone would find it possible to stop it under the ECHR.

[Baroness Merron (Lab)]

It would not be possible in any case to stop it in that way, because it would not invalidate legislation. I am just drawing the Committee’s attention to the fact that it would require further work. As the noble Lord will know, if a court finds that primary legislation is incompatible, it may make a declaration of incompatibility. As I said, although it does not invalidate legislation, it is usual practice for the Government to consider and address these matters.