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Captain of the Honourable Corps of Gentlemen-at-Arms and Chief Whip (Lord Kennedy of Southwark) (Lab Co-op)
My Lords, I will make my usual statement before we start proceedings. As ever, I will try to keep it short so that we can move on to the main business.
First, I thank the Clerk Assistant and the Clerk of Legislation for what I heard was an excellent and informative briefing on the facts of the Parliament Act earlier this week. A large number of noble Lords attended and found it useful. I would highly recommend that any noble Lords with further questions refer to a new Library briefing published this week. I have also spoken to the clerks and, if there is demand for another background briefing session, they will happily facilitate that. Alternatively, I am sure that the Clerk Assistant or Clerk of Legislation will be happy to discuss individually with any noble Lord any points they wish to raise. At this point, on behalf of the whole House, I put on record my thanks to all the staff of the House and the police for the work that they have done before today, and today, to keep us informed, safe and provided for in the Long Room and other catering outlets.
Turning to today’s proceedings, I will not repeat at length all my previous statements, but I remind noble Lords that, in line with the will of the House for more time, I will seek to adjourn the Committee at around 6 pm, as I did last week. However, any noble Lord can seek to bring proceedings to an end earlier by moving a Motion that the House be now resumed. Equally, we could get to target earlier and the Committee would adjourn earlier. To help noble Lords participate throughout the day, the Whips will facilitate a 40-minute lunch break at around 1 pm.
I also highlight to noble Lords that Committee will begin today with a debate on a group of amendments that was adjourned when the House resumed at 6 pm last Friday. Once the Deputy Chairman of Committees calls the debate on that group of amendments, any noble Lord who was here at the start of that debate last week can participate, but no one else. The clerks have helpfully provided a list of those present, and I have asked the Whips to monitor this.
My noble and learned friend Lord Falconer of Thoroton has set a target for today’s debate. I hope that, with discipline and the usual courtesies of the House, we may progress towards that target. I remind the House of my earlier statement that, if any noble Lord needs to leave the debate towards the end of the day for any particular reasons, including travel, I am very happy to arrange for a meeting or briefing to discuss the Minister’s response, rather than simply having to read it in Hansard.
Courtesy, kindness and respect for noble Lords who may have a different opinion, remembering that they hold that view just as sincerely as one holds one’s own view, should be the cornerstone of our debates today and always. For general guidance on how noble Lords should conduct themselves, I highly recommend the Companion: paragraph 4.29, on page 60, and paragraphs 8.81 and 8.82, on page 143, are particularly relevant to today’s proceedings. Copies of the Companion are available in the Printed Paper Office.
As always, my door remains open to all noble Lords and I want to assist the House. I am in Room 12 on the West Front Corridor. I hope that is welcome and, with that, I think that we should move on to the main business.
Terminally Ill Adults (End of Life) Bill
Friday 6th February 2026
(1 week, 1 day ago)
Lords ChamberRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Watch Debate Read Debate Ministerial Extracts Amendment Paper: HL Bill 112-IX(a) Amendments for Committee (Supplementary to the Ninth Marshalled List) - (6 Feb 2026)
Baroness Finlay of Llandaff (CB)
My Lords, I believe that there may be some people who wish to speak before I come to my final remarks. I certainly want to hear from the Front Benches and the sponsor of the Bill. I will therefore withhold any remarks at the moment.
Baroness O’Loan (CB)
My Lords, I have added my name to Amendments 102 and 106 in this group. Clause 2 is of the utmost importance because the definition of “terminal illness” underpins everything in the Bill. Without a terminal illness, the Bill does not apply and there is no ability to seek assistance in suicide, so the definition is enormously important. Clarity is absolutely necessary and would be enhanced if a list of terminal illnesses were required to be published before the clause on the voluntary assisted dying commissioner could come into effect, as Amendments 85, 894 and 896 would require. Some conditions need to be excluded, such as being elderly, as in Amendment 99. Amendment 102 seeks to ensure that dementia is recognised as a disability and not in itself a terminal illness.
Amendment 105 would exclude anyone with a congenital, genetic or lifelong condition, for which treatments are improving rapidly. Life expectancy has increased dramatically in conditions such as cystic fibrosis, COPD, Parkinson’s and Duchenne muscular dystrophy. Pathfinders Neuromuscular Alliance says:
“Many individuals with progressive conditions, such as muscular dystrophy, live far beyond their initial life expectancy due to advances in medical care. Misjudgments in prognoses could lead to premature decisions, effectively ending lives that might have been enriched by appropriate care and support”.
This Bill does not provide protection for those with such conditions, who may be coerced into seeking an assisted death.
Amendment 106, in the name of the noble Lord, Lord Hunt, and the noble Baroness, Lady Grey-Thompson, to which I have added my name, would prevent assisted dying being offered where medical negligence, malpractice or omission has occurred and given rise to disability, impairment or a terminal condition until all investigations, compensation claims et cetera have been concluded. In many cases involving medical negligence, a failure to diagnose a condition which may have been treatable when the patient first presented is finally diagnosed as a cancer at stage 4 and has metastasised. This may happen, for example, when a young woman, sometimes even a child, has cancer of the cervix or uterus: some doctors do not think they could have such a problem, because they are too young. This will be profoundly difficult for the patients and their families, and it is vital that they do not lose benefits or part of the compensation they might have received by dying of assisted suicide, rather than a death which would have been recorded as having been caused by medical negligence. Those resources may be vital for a single parent with a young family. Does the noble and learned Lord accept the need for these amendments, or what is his alternative suggestion?
There are conditions which can be stabilised or controlled for years, and which, if not stabilised or controlled, may cause a doctor to predict death. Noble Lords have articulated the concerns that exist about the inadequacy and danger of this primary definition. Illnesses that can be stabilised, halted or effectively managed by treatment must be excluded, ensuring that only genuinely terminal illnesses are included in the definition.
Lord Moylan (Con)
My Lords, I have four amendments in this group, three of which are closely related. They are Amendments 85, 894 and 896, the latter two of which are consequential on Amendment 85. I also have Amendment 100, but I will come back to that towards the end. I am grateful to the noble Baroness, Lady Fox of Buckley, and my noble friend Lord Hamilton of Epsom for lending their names to Amendment 85, and to the noble Lord, Lord Carlile of Berriew, for adding his name to Amendment 894
One of the concerns about the Bill is the possibility that the definition of one of the key qualifications, to have a terminal illness, becomes expanded over time—what I am going to call “creep”. I will not detain the Committee with examples from other jurisdictions, but there are examples where the scope for assisted dying has been made available to people with conditions that would hardly qualify as terminal illness and might well not have qualified as appropriate in the minds of the legislators who first put the legislation together. I think it would give the public some confidence in the Bill if they were to know that the capacity for creep was severely limited. My suggestion for limiting it is that there should be a list of what constitutes terminal illness. I am not suggesting that this list should be in the Bill; I believe it should be issued by the Secretary of State by way of regulation and should be updated periodically in the light of medical advice.
I turn now to a couple of questions I have for the noble and learned Lord, Lord Falconer, and I will then deal with some objections that might be raised. My first question concerns his own definition, in Clause 2(1)(a), that
“the person has an inevitably progressive illness or disease which cannot be reversed by treatment”.
My question to him in the first place is whether he regards “inevitably” and “progressive” as adding anything to the notion of being terminal; in other words, is each a subset of the other? Is the definition getting narrower with the addition of each of those words, or are they in fact otiose? If you left them out, would the scope of the definition be just the same? I would be interested to know his answer, although it does not affect directly what I am now going to say.
The question of the list was dealt with in the other place to some extent, and arguments were made which suggested that it would all be very difficult because people did not always die from one illness: sometimes they had two terminal illnesses, or they had complications or comorbidities. Medically, I am sure that is absolutely the case, but I do not think it is relevant to what I am arguing for, because the Bill is clear that you have to pass certain qualifications and thresholds to be considered for assisted dying. One is that you have
“an inevitably progressive illness or disease which cannot be reversed by treatment”,
but you have to have only one of them in order to qualify. You could have two, but you would still qualify—it is irrelevant. You could have one with several comorbidities, and you would still qualify. It does not matter how an individual might die in the end. What matters is their condition at a particular moment and whether they have
“an inevitably progressive illness or disease”
at a particular time—so applying the list does not seem very difficult to me.
The other objection that might be raised is that the list would be very difficult to put together because there are many illnesses or diseases, but I think this is wrong. If one considers illnesses or diseases as a way of dying, and one excludes such things as falling off a roof or some adventitious accident of that character, the diseases or illnesses on the list are all known. We know, medically, what people die of. Very occasionally, a new illness or disease of a terminal character arrives. AIDS was an example in the 1980s and 1990s. It completely shocked us, partly because it is such a rare thing for a new terminal illness or disease to arrive. Of course, my amendment would allow for the Secretary of State to adjust the list if there were such an eventuality in the future, heaven forfend. We do know what they are, and we can put them together. The Secretary of State can make a list, it will be subject to scrutiny—because, as I think the noble and learned Lord will confirm, all regulations made under the Bill have to be made by affirmative statutory instrument—and people will be able to comment. I think that would give them great assurance that creep was not going to be a feature of this. I would be grateful to hear the noble and learned Lord’s response to that proposal.
I come briefly now to my Amendment 100 in this group, which is quite different. This is genuinely probing because, when I read the Bill and got to Clause 2(4), I found a sentence that began:
“Nothing in this subsection results”.
It was strange, typographically, because it is not a new paragraph—there is not a paragraph break—but nor does it run on directly as a sentence. It has obviously been botched in at some point, probably in the other place. Anyway, these things happen. I read it, and then I read it again, and I read it over and over again. At the end of it, I still could not work out what the sentence actually means. Even if I could construe it in such a way that it did mean something, I would not know what it meant in the context of Clause 2. This is a genuine probing opportunity for clarity from the noble and learned Lord as to what import he thinks this sentence has in the clause. It would certainly please me, and I think many other noble Lords, if we understood that and whether, in fact, it should stand or be swept away. My proposal to delete it at this stage is, as I say, entirely probing, in order to hear what the noble and learned Lord has to say.
Baroness Coffey (Con)
My Lords, I have tabled Amendment 73. One of the issues here is whether a disease is terminal without treatment. A simple example is type 1 diabetes. The World Health Organization classifies diabetes as a disease. That means that, under the Bill as it stands, as pointed out by witnesses in oral evidence to the Commons Select Committee, anybody who decides not to take their insulin, for whatever reason, would automatically have an irreversible disease and they will die. I want to explore through this amendment whether that is what we are thinking about.
Lord Young of Norwood Green (Lab)
My Lords, I have not spoken in this debate before, but the contribution of the noble Lord, Lord Pannick, last week made me want to do so. He reminded us that:
“Nobody could say that a doctor can tell you that you will die within six months. But the Bill does not so provide. Its conditions require only that the doctor, and the panel in due course, are satisfied that … the person has an inevitably progressive illness or disease which cannot be reversed”—
Lord in Waiting/Government Whip (Lord Wilson of Sedgefield) (Lab)
The noble Lord is not down as having been present at the beginning of the debate last week.
Lord Young of Norwood Green (Lab)
My name was on the list. I checked last week and my name was on there.
Lord Wilson of Sedgefield (Lab)
If it is the will of the Committee to hear the noble Lord speak, then fine.
Lord Young of Norwood Green (Lab)
Thank you. I checked before I left, so I am puzzled.
The noble Lord, Lord Pannick, referred to situations where, as set out in the Bill,
“‘the person has an inevitably progressive illness or disease which cannot be reversed … and … the person’s death in consequence … can reasonably be expected within six months’”.—[Official Report, 30/1/26; col. 1261.]
We know from all the evidence we have heard that trying to predict when someone will die is not a precise science, but that is not really the point of this Bill. It is about ensuring that people have a right to choose and are doing so in circumstances where we can feel reasonably confident that safeguards are there.
I look at the safeguards in the Bill, and this is a very cautious step forward:
“Initial request for assistance: first declaration … Witnessing first declaration … First doctor’s assessment … Second doctor’s assessment … Doctors’ assessments: further provision”.
Some noble Lords are speaking as though we have just one doctor, who may not be very mature or experienced. That is not the case in this Bill. It is much more careful and cautious. The noble Baroness, Lady Jay of Paddington, reminded us last time that
“one of the international facts that supports entirely the position he is taking is that, in the … 33 jurisdictions where assisted dying is allowed, it is usually the case—I cite one or two—that, following that suggestion by a doctor, or prognosis or however you want to describe it, over a third of those who make the choice he has described then do not use the provision … There is no question that they want to die; they are simply using it almost as an insurance policy”.—[Official Report, 30/1/26; col. 1262.]
I understand that there is a real difference of opinion in this House. Some feel that, if we make this step forward—I listened carefully to the noble Baroness, Lady O’Loan—without putting more things in the Bill, it will be unsafe. I do not take that point of view. We are giving people, as the noble Lord, Lord Pannick, said, the right to choose. That may not accord with the views of all noble Lords. Others want us to take into account degree of suffering and all sorts of circumstances, but I do not accord with that. I take the view that we in this House are trying, with some difficulty, to ensure that we have a Bill that gives people the right to choose and has significant safeguards. Can it guarantee that we can tell people exactly when they will die? Of course not. Minister Wes Streeting announced recently that we will make significant improvements in cancer treatment, which will change people’s lives fundamentally. On those grounds, I hope the House will continue to support this Bill.
Lord Shamash (Lab)
My Lords, can I address the Committee on a personal note? My late brother-in-law suffered from muscular dystrophy, a horrendous progressive disease that many noble Lords may have come across. In the last years of his life, he was pushed around in a wheelchair. It was very difficult for the family, particularly for my wife, his sister.
Lord Wilson of Sedgefield (Lab)
Order. The noble Lord is not on the list. He was not there last week and should therefore not be taking part.
Lord Shamash (Lab)
Thank you. I apologise to the Front Bench about that.
The problem was, in the later part of his life, his lungs began to give way. I remember him saying to me, in the last two or three months of his life, “I just wish somebody could help me so that I could end my life”. Watching a member of your close family die from a horrendous disease is something I hope the House will take into account. I am very concerned about Amendment 105 because I think is very tough indeed, and I sincerely hope that the House will reject it.
Lord Winston (Lab)
Would the noble Lord agree that the word is “suffocated”, rather than “die”?
Lord Shamash (Lab)
I apologise. Yes, the word is “suffocated”—he was suffocating as his lungs began to fade.
Lord Farmer (Con)
My Lords, I support the amendment tabled by the noble Baroness, Lady Coffey. I am going to talk about my sister, whom I asked before she died whether I could bring her case before your Lordships. She said yes, so I have.
My sister had a very unhappy life; she was badly abused when she was a child and tried to kill herself three times before she was 20. Thankfully, she stayed alive until she was 75, and all the time she expressed her will as, “I don’t want to live”. When I was introduced here, she was here, and she said, “I’m glad I’m alive”, which I was very happy about. However, thereafter, she developed lung cancer. She had been a smoker, and she was obviously dying but she refused treatment. She allowed the lung cancer to kill her, but at all times, she had the option to have treatment for it. She had the autonomy to take the positive route, but she decided not to. She did not have any assistance from anybody else, and she died fairly peacefully when she was 75. I wanted to bring her case to your Lordships’ House in support of what the noble Baroness, Lady Coffey, was saying.
Lord Shinkwin (Con)
My Lords, I rise to support Amendment 105 in the name of the noble Lord, Lord Hunt of Kings Heath, to which I have added my name. I am saddened by the prejudice we have heard expressed by Members of your Lordships’ House this morning. For those of us with a lifelong congenital condition, this amendment is personal. It is also crucial because people like me need protection from such blatant prejudice—prejudice which the pandemic showed can inform so many clinical, and even administrative, decisions affecting disabled people’s care and treatment: decisions about life or death. This amendment would give those of us with lifelong congenital conditions some protection.
I can imagine that some noble Lords might be sceptical as to how an NHS founded on the principle of equal access to treatment, free at the point of delivery, could possibly also tolerate a culture of discrimination on grounds of disability. Surely, that is the very antithesis of its founding charter. Perhaps it is, but we human beings, being humans, bring our prejudices and—as the noble Baroness, Lady O’Loan, so ably reminded us—our unconscious bias to work, and healthcare staff are no exception. This is especially the case when the very nature of a congenital lifelong disability can often mean a condition that, despite very expensive treatment, may never be cured.
I was reminded of such prejudice only recently when attending an appointment at a world-renowned London hospital. The clinical staff could not have been nicer or more professional. In contrast, the young receptionist could barely conceal his hostility when I spoke to him. I have no idea why, as he was laughing and joking with another patient soon afterwards. All I know is that I experienced and immediately recognised discrimination, as if somehow, I chose to look or sound like this. I most definitely did not, yet I am discriminated against because of it.
Lord Evans of Rainow (Con)
My Lords, the noble Lord, Lord Shamash, mentioned a very moving story from his family regarding Duchenne muscular dystrophy, and I have a similar story but from a slightly different angle. My cousin Stephen was diagnosed with Duchenne muscular dystrophy in the 1960s, when this was a terminal illness without any real idea of a prognosis other than that those with it would die as very young people.
My family were determined to try to make Stephen’s life as comfortable and as long as possible. They campaigned with their local MP, who just so happened to be Alf Morris, Baron Morris of Manchester—an outstanding Member of Parliament, and of service to this House. They worked with him to come up with the Chronically Sick and Disabled Persons Act 1970. They went on to develop therapies for Duchenne muscular dystrophy, including making wheelchair provision compulsory on the NHS. My cousin lived five years longer than the average for Duchenne muscular dystrophy patients. The point I am making to the Committee is that if the assisted dying Bill had been used to that extent, and if we had given up when he was a very young man, that never would have happened.
Stephen had a full life, in so far as he could; he lived till he was 21 years of age, when the average was 14 or 15. It goes to show that, if you give up at a very early stage, you will not know how far you can push this disease. In the 21st century, through medication, Duchenne muscular dystrophy sufferers have an extended lifespan. In offering assisted dying to people with chronic diseases, we do not know the miracles of science and medication that can extend these people’s lives.
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.
Lord Markham (Con)
Building on from that, that is correct: there are two different approaches here. There are those among us who believe that choice should come first, and within that choice there should obviously be protections and safeguards. Then there are those people who have equally very firm beliefs that the restrictions should be in place first as protections. To summarise, a lot of the amendments in this group are about having certain illnesses and certain groups, such as disabled groups, that should be excluded from the Bill, and that you should be allowed to have this only if you have unbearable pain or suffering, or if there is no chance of treatments to extend life.
I will bring two points in here. Public opinion is overwhelmingly in favour of choice, at 70% in all the different opinion polls. I include disabled groups in that: they show that 70% of disabled people are in favour of it. Then, there are the personal experiences of people who are terminally ill: first, they do not want to die. They would be delighted if there were treatments that would extend their lives beyond six months, or for much longer. But, for them, getting the opportunity to have a death of their choosing is a great comfort and insurance. It does not mean that they are going to rush out and take it as soon as they have it. In a lot of cases—about 30% in other countries—they will not use it at all.
However, the fact is, those people want it to be there, like an insurance policy, so that if, towards the end of their life, they really do have unbearable suffering, however they define it—which might be pain, a loss of dignity, a feeling that they really do not want to go on—then they can have that choice and reason for wanting to do it, whatever their choice is. That is the important thing that we are trying to ensure. Yes, there will be protections, but giving people the ability and autonomy to have the comfort and the choice of being able to die in the way they wish is the most fundamental right of all.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am grateful for the contributions on eligibility and definition of terminal illness. Once again, I will keep detailed comments limited to amendments on which the Government have major legal, technical or operational workability concerns.
First, I will give a reassurance to your Lordships’ House in response to the observations of the noble Lord, Lord Harper, and the noble Baroness, Lady Grey-Thompson, about the modern service framework on palliative care and end-of-life care. We acknowledge that there has been a drafting error, which the noble Lord and the noble Baroness picked up on. The drafting error is in the national cancer plan. I reassure your Lordships’ House that, as has been stated previously, the interim update will be published this spring and the full modern service framework will follow in the autumn. That issue was purely down to a drafting error.
I turn now to the amendments. Amendments 71, 77 and 79 were tabled by the noble Lady, Baroness Finlay, and Amendments 83A, 104 and 105 were tabled by the noble Lord, Lord Polak, my noble friend Lord Hunt of Kings Heath and the noble Baroness, Lady Grey-Thompson. Noble Lords may wish to note the Government’s workability concern with this set of amendments. Key terms and concepts in the amendments are undefined, which may introduce uncertainty when determining who is eligible under the Bill and, particularly under Amendments 71, 77 and 79, what it means to slow a disease. There is a risk that unclear eligibility criteria could result in ambiguity for those applying the legislation, which may give rise to legal challenges to decisions made under it.
Amendment 105 could also give rise to legal challenge on the basis that excluding people with particular conditions from assisted dying may not be justified under Article 2 or Article 8 of the ECHR and may amount to unjustified discrimination under Article 14. Any differential treatment would need to be objectively and reasonably justified in order to comply with ECHR obligations.
Amendments 74 and 94, tabled by the noble Lord, Lord Taylor of Holbeach, would exclude from the definition of “terminal illness” any individual whose condition can be meaningfully halted or controlled by available treatment. Clinically, it may be difficult to determine whether an illness or disease can be “meaningfully halted, or controlled” by treatment, and it is possible that an illness or disease could have a short halt before deterioration starts again. This will make it difficult for clinicians to decide whether a person is “terminally ill” and eligible for assisted dying and is likely to lead to challenges to decisions. These amendments may result in a person becoming ineligible, irrespective of whether they choose to take the available treatment.
Amendment 75, tabled by the noble Baroness, Lady Finlay, would amend the definition of “terminally ill” by removing the test of death being reasonably expected in six months, and replacing it with a requirement that the rate of progress of the disease, with treatment in line with NICE guidelines, indicates that death can be expected within six months. Introducing the concept of treatment in accordance with NICE guidelines may create difficulties, as the amendment would require clinicians to assess the patient’s prognosis as if they were treated in accordance with NICE guidelines. This may result in a person becoming ineligible, irrespective of whether they chose to have treatment in accordance with NICE guidelines. This amendment therefore requires clinicians to make a judgment on a potentially hypothetical basis.
Amendment 80, tabled by the noble Baroness, Lady Lawlor, would provide that a person is “terminally ill” where their death has an 80% likelihood of occurring within six months, according to the written opinion of two specialist, consultant-level hospital doctors. These doctors must be knowledgeable about and have experience of treating patients with the progressive illness in question. This amendment would create significant operational workability concerns. It would require the clinician making a determination about the person’s prognosis to meet a high threshold of certainty. The criteria could be especially difficult to meet for a person who has a rare progressive illness or disease, about which there may not be widespread clinical knowledge or experience.
Amendment 82, tabled by the noble Lord, Lord Polak, would require two consultants to provide a view on an individual’s life expectancy, and for them to determine that their death can be “highly probable” within six months, rather than the current drafting of, can be “reasonably expected”. Several terms are not defined in the amendment and are likely to lead to ambiguity, including operational issues, around which doctors are to assess life expectancy and to what standard.
Lord Moylan (Con)
May I pursue a point the Minister made about my Amendment 85? My understanding of the Bill, as drafted, is that one has to have an inevitably progressive illness or disease, not that one has to have a six-month prognosis of one’s death. The two might be quite separate.
One might, as the noble Baroness said, have a combination of circumstances that means one is likely to die within six months without having a specific, identifiable disease. The Minister seems to be saying that the Government’s interpretation of this clause is that one does not need to have a specific, identifiable terminal illness; one simply needs to have a set of circumstances that together might result in a prognosis of death within six months.
If that is the case—and that is the Government’s view of the meaning of that clause, as the Minister seems to imply—that widens to an astonishing extent the conditions that might qualify for the Bill. I would like to hear the Minister say—and the noble and learned Lord, Lord Falconer, may possibly want to comment on this when he speaks—whether it really is their interpretation that it could be any set of circumstances that lead to a six-month diagnosis without there being an identifiable illness.
Baroness Merron (Lab)
I will briefly look at the actual amendment. As I said in my response, the workability concerns are about the specification of a list of illnesses or diseases. I have already outlined why that would be unworkable—because it is often a combination of illnesses, as well as the complications of those illnesses, that are interacting, rather than there being just one. I referred earlier to why it would be extremely difficult. I have been looking at the specifics of the amendment, but to do what it says would create more ambiguity than there is currently. In reality, my response is covering our concerns; where I do not make a comment, there are no workability concerns.
Lord Taylor of Holbeach (Con)
As the Minister will know, I have made it clear that I am concerned about suffering in the last days of life. One of the key elements of that is palliative care. When one talks about treatment, one of the incentives for death is suffering. Does the Minister have anything to say to the Committee about the status of palliative care within the National Health Service? Are there any plans afoot, and when will this particular course of treatment be available to people? Otherwise, many people faced with terminal illness will be tempted to seek assisted suicide, which I think should be discouraged.
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.
Lord Pannick (CB)
I suggest to the Minister that the answer to the noble Lord, Lord Harper, is very simple. An unfortunate person may have more than one inevitably progressive illness or disease, each of which will lead to their death within six months. It is a standard principle of statutory interpretation that the singular includes the plural.
Lord Moylan (Con)
May I comment before the Minister sits down? I would hesitate to intervene on the noble Lord, Lord Pannick, because that would be quite correctly stopped by the Whips, but what he is saying is not to the point. If someone has one fatal illness that will kill them at some time in the future, such as a certain form of cancer, they may of course have another illness, say heart disease—I am not a medical person—that could equally see them off at some point in the future. Of course, that will be included in the scope—we entirely understand that.
That is not quite what the Minister is saying. She is saying that one might have a combination of circumstances, each of which might be non-fatal in itself, but that in combination they might result in a terminal diagnosis within six months. If one is frail—again, I am not a medical person—one might have pneumonia combined with certain other conditions, such that the combination could be very threatening and might lead to death within six months, but none of those instances would be fatal in itself. That seems to be what the Minister is saying, but it is not what the Bill says. There has to be an identifiable—
Lord in Waiting/Government Whip (Lord Katz) (Lab)
I am not entirely clear whether this is an intervention or a speech. If it is an intervention, it should be clearer and briefer than that, and have an actual question. Please come to the point.
Lord Moylan (Con)
This has exposed something that has never been mentioned in relation to the Bill before, or in the whole of our debate on terminal illness. It is a matter of crucial importance. I know the Minister wants to dodge it, but it seems that the Government’s interpretation of Clause 2(1) is very different from what it appears to say in plain language.
Lord Falconer of Thoroton (Lab)
I pay tribute to the speeches of the noble Lords, Lord Farmer, Lord Shinkwin and Lord Shamash, all of whom referred to distressing personal circumstances. The Committee is grateful that people are willing to talk about these issues in this very difficult debate.
This group of amendments concerns the definition of terminal illness. As people have just identified, the definition of a person being terminally ill to satisfy the requirements of the Bill is that
“the person has an inevitably progressive illness or disease which cannot be reversed by treatment, and … the person’s death in consequence of that illness or disease can reasonably be expected within six months”.
I will pick up on four points that came out of the debate. First, to deal with the point raised by the noble Lord, Lord Moylan, the words “inevitably” and “progressive” plainly limit the words “illness or disease”, so the illness or disease has to be both inevitable and progressive.
Secondly, to deal with the very important point raised by the Baroness, Lady Finlay of Llandaff, frailty is plainly not within that definition. Frailty, old age or something similar would not satisfy the requirements of
“an inevitably progressive illness or disease”.
That specific point was addressed in the Commons, where the initial draft of the Bill had the words
“inevitably progressive illness, disease or medical condition”.
The words “medical condition” were removed to deal with that specific point. The words
“inevitably progressive illness or disease which cannot be reversed by treatment”
deal with the sort of example given by the noble Baroness, Lady Coffey, and other noble Lords. There will be illnesses or diseases, such as type 1 diabetes or HIV/AIDS, where there is a traditional and accepted treatment which will effectively reverse the effect of the condition. It will not get rid of it completely. You still may have HIV or be a type 1 diabetic, but the effect of the condition is reversed. The intention behind putting in the word “reversed” was to deal with those.
Lord Falconer of Thoroton (Lab)
May I just finish this?
For example, the noble Baroness, Lady Lawlor, proposed 80% and two people expert in the area. The requirement of the Bill is that there should be a reasonable expectation that the person’s death will come within six months. That has to be approved by two separate doctors and a panel. Where there is any doubt about the prognosis, each or both of the doctors have to seek the advice of somebody specialist in the area. That seems an appropriate degree of safeguard.
I apologise to the noble Baroness.
Baroness Grey-Thompson (CB)
I just wanted to clarify what the noble and learned Lord said. He said, as I understand it, that he did not support these amendments because they would mean that a dying person would have to make difficult decisions. Is requesting assisted suicide not a difficult decision, which they would already be taking?
Lord Falconer of Thoroton (Lab)
Of course it is a difficult decision, but that is the decision the person has to be clear, firm and settled about. I do not see parity between the decision the individual has to make and making sure there are appropriately qualified people ensuring that the person has the disease. They seem to be two important but different requirements.
The next group of amendments, primarily advanced by the noble Lord, Lord Frost, is on the question of whether suffering should be an element in the eligibility—that terminal illness itself is not sufficient. We have had this debate a number of times, particularly at Second Reading, on some the circumstances where a terminal illness should be excluded. For all the reasons I have given in the past, I am not in favour of suffering being the requirement. What suffering is will vary from person to person. In some cases, it will be the indignity. In some cases, it will be the appalling thought of the change in relationship with those they love. For others, it will be the pain they are going through. It is not, in my respectful view, an appropriate or easily applied condition. So, for all the reasons I have given on a number of occasions before, I am against putting in the question of suffering.
The next group of amendments is that advanced this morning by the noble Baroness, Lady O’Loan. They say that if you are the victim of medical negligence, you should not be entitled to an assisted death. If, for example, your doctor failed to diagnose your condition early enough for you to get treatment and, as a result, you are likely to die earlier, even though you have the condition—for example, prostate cancer—is the position that, because of the negligence of your doctor, you are truly to be denied the right to an assisted death? Unfortunately, I cannot see the logic of that.
Baroness O’Loan (CB)
With respect, I did not say that you should be denied an assisted death. I said that assisted death should not be available until all compensation matters and so on have been sorted out.
Lord Falconer of Thoroton (Lab)
I think that I have dealt with that point. I have dealt with “inevitably progressive”; I will now deal with the list of illnesses mentioned by the noble Lord, Lord Moylan. Again, I do not think that that is either practical or sensible. The state would have to identify all illnesses in a list; it might miss some, and new illnesses come. Surely it is much better that one has a definition of what the policy aim is, which is to cover
“an inevitably progressive illness or disease which cannot be reversed by treatment”.
I will indicate by an example why the noble Lord, Lord Moylan, is wrong. If you think about HIV/AIDS, how many people would have died without this option—if it had been made available—before the state would have been willing to recognise that it was a fatal condition? It would seem jolly unfair to people that you have to wait for the state to make that decision. The noble Lord, Lord Moylan, also asked for a—
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.
Lord Hamilton of Epsom (Con)
The noble and learned Lord kindly agreed to address the issue of inadvertent misdiagnosis and he said that this group of amendments led by Amendment 71 was the time to bring that up. It was pointed out at the time by the noble Baroness, Lady Berger, that 23% of six-month diagnoses of death turned out to be wrong. How does that tie in with the Minister telling us that there had to be an assumption of an 80% chance of somebody dying within six months? Can the noble and learned Lord address that problem before we finish?
Lord Falconer of Thoroton (Lab)
First, I am saying that six months is safe for the reasons that Chris Whitty gave: six months is generally about right; it might not be right and it might be five months or seven months, but it is a proper basis on which to proceed. The statistical evidence that the noble Lord, Lord Hamilton, is relying on is about errors that are not of the massive scale that would undermine that proposition. Secondly, having just checked with my noble friend the Minister, she was not saying that it had to be 80% right. She was saying what the amendment said—I think it was in the name of the noble Baroness, Lady Lawlor—and why it was not an appropriate or workable amendment.
Lord Shinkwin (Con)
I thank the noble and learned Lord for mentioning the importance of listening. I also thank him for the fact that, in dismissing every single amendment that your Lordships have considered, he has reminded the House of the extent to which he is listening. I ask him, because he failed to address my question about filibustering, to confirm that our consideration of these amendments will not be presented as filibustering—a yes or no would suffice. Finally, I do not suffer from my condition; I live with it, despite obstacles that I encounter. I suffer from prejudice.
Lord Falconer of Thoroton (Lab)
I apologise unreservedly for saying that the noble Lord, Lord Shinkwin, suffers from a condition. I completely accept the way in which he put it. I also sympathise with him and accept that he suffers from prejudice on a regular basis in relation to it. That is obviously a fate that he has suffered and I have sympathy for him in that respect. On the question of filibuster, my issue with the way in which noble Lords have been dealing with this is that we are now on the ninth day of Committee and we have got to Clause 2. My experience of this House is that it is able to focus on the things that—
Lord Falconer of Thoroton (Lab)
Let me finish. We focus on the things that matter and we should not have taken nine days to get to Clause 2.
Baroness O'Loan (CB)
The noble and learned Lord keeps saying that we have only got to Clause 1 or Clause 2, but the reality is that over these nine days we have discussed multiple clauses of and schedules to the Bill. It is misleading to suggest that we have only done Clause 1 and a bit of Clause 2.
Lord Falconer of Thoroton (Lab)
If that is the position, let us agree a process by which, having covered so many topics already, we can speed our process so that perhaps we can get through Committee in the next day or two.
Baroness O'Loan (CB)
The House has its procedures and generally stays by them. There is nothing going on during this Bill which is filibustering. It is analysis of the defects and the flaws in this dangerous Bill.
Baroness Finlay of Llandaff (CB)
My Lords, after a very long and extensive debate, I thank all noble Lords who have contributed, particularly those who contributed with their own personal stories and descriptions of the way those experiences have affected people. However, I remind the Committee that we are legislating for the whole country, not for individual stories, and must look at eligibility carefully.
Frankly, the response from the noble and learned Lord is deeply disappointing. These amendments were tabled to make the boundaries of this Bill safer and to avoid opening the door to the wide creep that could happen. In terms of the six-month prognosis, there is an extensive body of evidence that there is no clinical truth in a six-month prognosis. I am delighted to be sitting next to my noble friend Lord Carter of Haslemere, who illustrates that beautifully, as does the noble Baroness, Lady Campbell of Surbiton, who was deemed to be terminally ill many decades ago.
I will try briefly to summarise. Frailty is not included, apparently, but geriatricians will say that frailty has a six-month prognosis, as does cancer. I would not want frailty included and am glad that it has been ruled out. However, people who are frail will also get other conditions. This group of amendments hit to the very issue of informed choice and patients making those choices. As was said, knowledge is power. The information that people need is that their diagnosis is accurate. They need information about the prognosis. It is very disappointing that the wealth of research evidence—systematic reviews, observation studies and so on—has shown that at six months the margin of error is huge.
My noble friend Lady Freeman is absolutely right regarding the way of communicating risk. You can say to people, “In 100 patients, so many are likely to be alive at six months”. The follow-up question that you will always get is, “Yes, but which group am I in?” That is the unknown. Their family will then push further—though not always—to know which group they are in. It is important in communicating information that we are honest and do not pretend that there is some clinical truth around “six months”. There is also, sadly, bias in the minds of doctors. I was concerned to hear from the Minister, if I heard it right, that a different six-month test would be applied by two different doctors—the co-ordinating doctor and the independent doctor—but I will go back to Hansard to look at that. The noble Lord, Lord Wolfson of Tredegar, pointed out the legal uncertainty around “reasonably be expected”. I caution that we should not ignore that.
It is disappointing that there is still a view that, somehow, six months is absolute, ignoring that there are patients who are expected to die not only in six months but possibly much sooner but who remain alive many years later. This is not about five months or seven months. This is about years—five years, 10 years, 15 years. I will not go into individual cases now, but I have a catalogue of them. The six months is not predictable. The attempt in these amendments was to make sure that the patient has better information on which to make probably the most difficult decision that they will ever make and the most irreversible—to end their life.
We have been trying to look at the problems in and improve the Bill. Rejection of all these amendments out of hand, without any invitation to look again at the wording or try to tighten it, is disappointing. With that, I beg leave to withdraw the amendment at this stage.
Lord Falconer of Thoroton
“(2) Where—(a) a person does not eat or drink, or limits their eating or drinking, because of a mental disorder, and(b) their not eating or drinking, or limited eating or drinking, causes them to have an illness or disease, the person is not regarded for the purposes of this Act as terminally ill by virtue of the illness or disease.”Member's explanatory statement
This amendment clarifies the intended effect of the subsection (namely, excluding from the definition of “terminally ill” any illness or disease caused by the person not eating or drinking, where not eating or drinking occurs as a result of a mental disorder), and expressly provides that the subsection also covers cases of limited eating or drinking.
Lord Falconer of Thoroton (Lab)
My Lords, this is an important amendment designed to ensure that persons with anorexia cannot, by not eating, put themselves into a position in which they qualify for an assisted death. I am delighted to have the support of the noble Lord, Lord Carlile, the noble Baroness, Lady Parminter—who has played a very significant part in bringing this to our attention and ensuring that we get the right answer—and the noble Baroness, Lady Hollins, who is in her place.
The matter was raised in the Commons and an amendment was agreed on Report, because everybody agreed that people with anorexia should not be able to get themselves into eligibility. Clause 2(2) was inserted, stating:
“A person who would not otherwise meet the requirements of subsection (1) shall not be considered to meet those requirements solely as a result of voluntarily stopping eating or drinking”.
That gives rise to two significant problems. The first concerns “solely”. If it was only by reason of not eating or drinking, you would fall out of it, but it might be partly because of it and partly for other reasons—which would make anorexia a means of getting you to an assisted death. Secondly, there was doubt about “voluntarily”. Is it voluntary if it is truly a medical condition?
The amendment that I and those supporting me are proposing is intended to deal with both issues. It says that where
“a person does not eat or drink, or limits their eating or drinking, because of a mental disorder, and … their not eating or drinking, or limited eating or drinking, causes them to have an illness or disease, the person is not regarded for the purposes of this Act as terminally ill”,
so it does not have to be the sole reason. I believe that this is workable and does what I think everybody in this Chamber would want—to exclude people with anorexia from making themselves eligible.
Since that amendment was tabled, an amendment has been tabled in the name of my noble and learned friend Lady Scotland of Asthal, supported by my noble friend Lady Berger, which would put in before
“because of a mental disorder”
in my amendment “either voluntarily or”. That would cover every possibility.
I am keen to accept the amendment to my amendment tabled by the noble and learned Baroness, Lady Scotland, and the noble Baroness, Lady Berger. I invite the Committee to agree my amendment today. I will not put it to a vote, but if the Committee thinks it is the right course to take, I invite noble Lords, in accordance with acceptable practice in Committee, to agree on the nod that it goes in today. I beg to move.
Baroness Keeley
Baroness Keeley (Lab)
My Lords, I am speaking on behalf of my noble and learned friend Lady Scotland, who made clear last Friday that she could not attend today’s Committee debate. I very much appreciate what my noble and learned friend Lord Falconer has just said, but it is worth me explaining Amendment 87A a little and making another couple of points.
The purpose of Amendment 87A is simple—to retain a safeguard that prevents a person becoming eligible for assisted dying by choosing to stop or limit their drinking. We have heard about what happens around that.
I certainly welcome the intention behind Amendment 87, which rightly seeks to protect people with anorexia nervosa, whose restricted intake cannot truly be considered voluntary. On that point, there is welcome consensus. But there are some points that are still worth making.
As drafted, Amendment 87 would inadvertently dismantle another essential safeguard that would ensure that people who are not terminally ill cannot make themselves terminally ill by deliberately ceasing food and fluids. This issue is entirely distinct from anorexia. The other place added Clause 2(2) specifically to prevent that.
Amendment 87A restores that protection so that Amendment 87 would safeguard both groups—those whose mental disorder limits eating and drinking and those who might deliberately restrict intake. This is not a theoretical concern. The case of Cody Sontag in Oregon shows us that what we fear may happen is already happening in one of the jurisdictions that we keep hearing has not experienced significant challenges with assisted dying. Cody was a woman with mild cognitive impairment who feared future cognitive decline after watching her father die of Alzheimer’s disease. After being advised by an end-of-life organisation that by voluntarily stopping eating and drinking she could bring herself within the eligibility for an assisted death without a waiting period, she did so. Within five days, her doctor concluded that she was terminally ill due to dehydration. Two days later, she died by assisted death.
The American Academy of Aid-in-Dying Medicine acknowledges that this loophole is a legal grey zone. I am sure that noble Lords agree there must be no grey zones when dealing with irreversible decisions about life and death.
Even if amended by Amendment 87A, Amendment 87 would not fully protect people with eating disorders, because many people with eating disorders do not restrict their eating and drinking. For example, people with type 1 diabetes and an eating disorder will manipulate insulin, and people with bulimia binge and purge. Both behaviours can be life threatening—particularly where treatment is refused or unavailable—despite being treatable conditions. Under Clause 2(1), such individuals could still meet the definition of terminal illness.
Throughout the Bill’s passage, as my noble and learned friend Lord Falconer acknowledged, concerns about protecting people with eating disorders have repeatedly resurfaced. Concerns were raised repeatedly in the other place, in oral evidence, in line-by-line scrutiny on Report, and at Third Reading, and we are raising them again here. It is abundantly clear that we have not yet got this right, so my noble and learned friend’s comments about accepting Amendment 87A are very welcome.
The Bill does not yet protect this vulnerable and growing group of people, illustrating how easily complex conditions can fall outside intended protections. For that reason, I support Amendment 101 in the name of the noble Baroness, Lady Parminter, which would explicitly rule out the physical effects of any mental illness, including eating disorders, from qualifying the person for assisted dying.
Evidence from other jurisdictions shows that more than 60 people with eating disorders have already died by assisted death—all women, and the majority aged under 40. We must not repeat those mistakes here.
I also support Amendment 92 in the name of my noble friend Lady Debbonaire, which addresses the serious risk posed when someone with a treatable condition refuses or withdraws consent to treatment. Long, difficult treatment journeys can leave people despairing. Under the Bill as drafted, refusal of treatment would become a straightforward route to eligibility. The amendment from the noble Baroness, Lady Parminter, would close that loophole for eating disorders, and Amendment 92 would extend protection to all treatable conditions. We should adopt both. This is fundamentally a matter of sequencing.
Someone who is terminally ill and chooses an assisted death is entirely different from someone who makes themselves terminally ill by refusing treatment due to suicidal feelings. The Bill was never intended to allow the latter.
Our purpose is to make the Bill safer, and adopting all these amendments is essential to doing so. There can be no grey areas in matters of life and death and the protection of vulnerable people.
Lord Empey (UUP)
My Lords, I will speak to Amendment 89. I think that everybody in the Committee is more or less on the same page in what we are trying to achieve here. This amendment would add,
“or withdrawing medication, hydration, or life-sustaining devices”
to Clause 2(2). This has perhaps been forgotten about, but people sometimes rely on ventilators and other equipment to sustain their lives, so it is not a big leap forward to add this to the legislation. It is simple and straightforward, and amending Clause 2(2) seems to make sense. I cannot think of any reason why the noble and learned Lord should not adopt the amendment as a sensible way forward. It indicates—we have had this conversation a number of times, but we have to bear it in mind—that there are still significant weaknesses. We have to make the Bill safe.
On the hostile reaction to what we are trying to do here, I gently remind the Committee that when we last discussed this subject on 22 October 2021, at the Second Reading of the Assisted Dying Bill that Baroness Meacher brought forward, her Private Member’s Bill had 10 pages and 13 clauses. The Bill before us has 51 pages and 59 clauses. People have to understand that this is a massive Private Member’s Bill and is not normal in terms of how we deal with such Bills—it is much bigger. With that, I hope that the noble and learned Lord will have no difficulty in accepting Amendment 89.
Baroness Fox of Buckley (Non-Afl)
My Lords, I will speak to my Amendment 103. I thank the noble Baroness, Lady Hollins, for adding her name to it. It is a modest amendment simply seeking to ensure that a person is not categorised as terminally ill if they have refused life-saving treatment because they are influenced by a mental disorder. The noble Baroness, Lady Keeley, was perceptive in addressing some of the issues that concern me and are why I tabled this amendment.
We are talking about any individual who, in effect, voluntarily brings themselves within the definition of terminal illness as defined in the Bill. As we heard on the previous group, supporters of the Bill often present the six-month prognosis as clear-cut and argue that we all know what we mean by terminal illness. In public discussions, the example given is usually cancer, which again seems fairly clear-cut. But we heard on the previous group that life and death and diseases are rather more complicated. The noble Lord, Lord Moylan, raised some very thought-provoking issues around that.
I want to make a bit more concrete what terminal illness would mean in the examples that I talk about. I have noted that the noble Baroness, Lady Coffey, started this theme in the previous group, and I was very affected by the moving speech made by the noble Lord, Lord Farmer, which also pertains to this. Where someone suffers a serious depressive episode, perhaps related to a debilitating physical illness that is difficult but none the less treatable, what would happen if, in a temporary period of despair, they refuse treatments such as dialysis or HIV antivirals, therefore potentially leading them to a terminally ill prognosis? Would they be eligible for assisted death in that instance?
Or let us take the case of a suicidal person, perhaps a prisoner suffering mental distress, who has attempted to take his own life several times before but suicide prevention policies have saved him. I think in particular of prisoners I have long campaigned for who are on IPP sentences. Tragically, suicide figures among that group of prisoners are very high and suicidal ideation is a real factor for those prisoners. Our imagined prisoner is not just mentally disturbed but physically dependent on insulin for diabetes and needs to take it to remain alive. If that person refuses to take that treatment and becomes seriously ill, bringing upon himself the inevitability of having a progressive disease and it becoming terminal, would he be eligible for assisted death under this Bill?
This example would seem to contradict the slogan of many of the Bill’s supporters, which we frequently hear: “They’re dying anyway”. As it happens, it is a phrase that I find particularly chilling, but, in this instance, they would not be “dying anyway”; they would be dying in a self-induced way. How will the idea of terminal illness in such instances be weighed up? In the case of our IPP prisoner refusing to take treatment such as insulin—perhaps even refusing to eat or drink—this could lead to an inevitable assisted death, because he would meet the physical criteria of terminal illness when, actually, the root cause was not inevitably progressive.
I like to imagine that we as parliamentarians, along with campaigners, will be successful in ensuring that IPP prisoners are freed from the hopelessness of an abolished prison sentence that psychiatrists uniformly and consistently say is a major factor in making people suffer mental illness in prison. If the IPP was ended, that prisoner could resume their medical treatment and their mental ill-health would have changed because the social circumstances would have changed. Therefore, they could resume their treatment, start engaging again, feel that they have a reason to live and become treatable, with recovery possible—but not if it is too late as they have already had an assisted death. In other words, terminal prognosis is not inevitable in that instance but self-induced, driven by a disturbance of the mind.
The noble and learned Lord, Lord Falconer, has some insight into the issues in this amendment, as he has explained. He has tabled an amendment and talked about any disease caused by a person not eating or drinking when that occurs as a result of mental disorder. Obviously, the focus there is on anorexia and eating disorders, but is this not a similar example?
I raise these issues because this is a loophole that has been nagging at me. I cannot see anywhere in the Bill where safeguards exist to prevent such undoubted unintended outcomes. Without those safeguards, the drafting of the Bill could inadvertently incentivise self-destructive choices about treatments for illnesses that are treatable, and lead to irreversible early death facilitated by state medical services when life-saving medical treatments could have ensured that people lived and were not categorised as terminally ill. It is this confusion—about who defines terminal if you put yourself into that category—that I would like the noble and learned Lord to reassure me about and clarify.
Baroness Hollins (CB)
My Lords, I added my name to Amendment 87, which details the exclusion of those with diagnosed eating disorders from accessing assisted dying, because I consider this a tricky area deserving of very careful debate. There are serious and specific risks that the Bill poses to people with anorexia nervosa and other eating disorders—conditions with the highest mortality rate of any psychiatric illness, but which are not terminal illnesses. They are complex fluctuating disorders, characterised by impaired insight and a distorted relationship with food, weight and how people view themselves.
Written and oral briefings that we have received make it clear that this is not just a theoretical concern. The Complex Life and Death Decisions group briefing on eating disorders documented how, in jurisdictions with assisted dying laws, eating disorders have been redefined as terminal once patients stop eating and drinking. This is despite the availability of effective evidence-based treatments and well-documented cases of recovery, even after decades of illness. A systematic review published last year in Frontiers in Psychiatry identified at least 60 individuals with eating disorders who died by assisted death in Oregon, Colorado and California—jurisdictions where, as in this Bill, assisted dying is restricted to terminal conditions. A third of those who died were in their teens or 20s, and all were women.
Cases such as this demonstrate the danger of conflating treatment refusal with terminal illness, and of mistaking the voice of a life-threatening psychiatric disorder for a wish to die. Starvation affects the brain in profound ways, including causing rigidity of thinking and allowing the illness itself to dominate choices. This can happen even to the point where perceived thinness is valued over life.
Yet people with anorexia can appear highly articulate and lucid, which can mask these deeper impairments and make capacity assessments unreliable. Many are judged to have capacity in other areas of life even while their decision-making around food, weight and choosing self-preservation is seriously distorted by the disorder. Someone may seem capable of making an end-of-life decision while simultaneously lacking capacity for the very decisions that would keep them alive. We need to acknowledge this complexity and proceed with the utmost care, recognising that these individuals are among those most at risk under the Bill.
Those who refuse to eat or drink because of mental illness must also be excluded from the Bill’s scope so that we can properly safeguard them and ensure that they receive the treatment and support that they need to recover. Amendment 87A would offer a valuable clarification, ensuring that this would apply regardless of whether the refusal of food or drink is voluntary or arises from a mental disorder. This would prevent any ambiguity that could otherwise allow conditions such as catatonia or other serious mental illnesses to be misclassified as terminal under the Bill. It would provide further safeguards for people with mental disorders.
There are mental-health conditions where life-threatening physical complications can occur without the restriction of food and drink. Amendments 90, 92 and 103 also cover this key area and would ensure that assisted dying is limited to people who are genuinely terminally ill due to disease progression and not because they choose to refuse care, food, fluids or treatment. A person cannot be considered terminally ill if their life-threatening condition arises from the secondary effects of mental illness.
Baroness O’Loan (CB)
My Lords, the issues raised in this group are extensive and a matter for great concern. Refusing food and hydration is a sure way to die, as, in many cases, is refusing treatment such as dialysis and insulin. Refusing food or treatment is a choice that a patient is entitled to make, if they have the capacity to make such a decision. However, that cannot translate into an obligation on the state to help the person to kill themselves. That was recognised, as the noble and learned Lord, Lord Falconer, said, by the Bill’s sponsor in the other place, hence the wording of Clause 2(2). However, the noble and learned Lord’s Amendment 87 would remove the safeguard offered by Clause 2(2), as it would prevent the Bill applying only where the person has a mental disorder and the act of refusing food or hydration causes them to have an illness or disease.
Many states start by offering assistance to die in very limited circumstances, but, only a short time afterwards, the grounds for the state helping people to kill themselves expand—in some cases, almost inconceivably. Do you have no wheelchair? We will help you die. Do you have no home? We will help you die. Are you suffering from PTSD after military service? We will help you die. In many jurisdictions, anorexia, which is a treatable illness, is accepted as justification for assisted suicide and so on. All the examples that I have just given—no wheelchair, no home and suffering PTSD—were grounds for assisted dying in Canada recently.
There are many suggestions for how to address the terrible vacuum through which all sorts of conditions that are not terminal could, as a consequence of refusing food, treatment or hydration, become terminal. I put my name to one such amendment, Amendment 101, in the name of the noble Baroness, Lady Parminter, and all the amendments in this group, other than Amendment 87, seek to address the issue. However, it is clear that the list of conditions and situations currently provided in Clause 2 as exceptions to the definition of terminal illness is not adequate. The noble and learned Lord, Lord Falconer, has even removed from the Bill the more general safeguard inserted by the MP for Batley and Spen. The noble and learned Lord will have to move far beyond his Amendments 87 and 87A if he is to satisfy the Committee that the definition of the situations that do not qualify as terminal illness is in any way satisfactory.
The prevalence of eating disorders goes way beyond what one might perhaps reasonably expect. NHS statistics for 2023 tell us that the prevalence of any eating disorder in the age group of 11 to 16 year-olds was 2.6%, but that in the case of girls it was 4.3%, compared with only 1% in the case of boys. If we move to the group of 17 to 19 year-olds, the figure is 12.5% in the whole group but, among girls, the number suffering from an eating disorder rises to 20.8%, compared with 5.1% among boys. Those are NHS figures. A review of current literature up to 2022 investigating suicide in eating disorders found that the prevalence of suicidal ideation was 51% and the prevalence of suicide attempts was 22%. I am very grateful to the young intern doing a PhD who provided me with these figures from the NHS. They demonstrate the magnitude of the problem of eating disorders today and, even more terribly, the 51% prevalence of suicidal ideation. Half of all people suffering from anorexia or other eating disorders will contemplate suicide, and more than one in five of those suffering from an eating disorder will attempt to take their own lives, although the disorder that they suffer from can be treated if they get proper treatment.
The Bill effectively creates a class of people—particularly disabled people, diabetics, those on dialysis, and others who need continuous life-sustaining treatment—who can at will cause themselves to have a terminal illness as defined by the Bill. Experts and the courts have agreed that refusing such treatment and creating a terminal illness out of a desire to die does not vitiate capacity. Can the noble and learned Lord, Lord Falconer, explain how creating a class of disabled people for whom voluntary suicide is legal and state-supported is consistent with the UK’s obligations under Articles 2 and 14 of the European convention?
Baroness Finlay of Llandaff (CB)
My Lords, I have in this group an amendment that was recommended by the Complex Life and Death Decisions group at King’s and which builds on the clause that was proposed in the other place by the MP for Bradford West and accepted, currently Clause 2(2). It seems that Amendment 87 before us would knock that out, but it has an amendment to it that has been clearly explained by the noble Baroness, Lady Keeley.
This seems to be the start of an improvement that is very necessary, but it does not do everything. There is a concern that those with other types of eating disorder can be missed out or slip through the net, particularly those with bulimia and those who go on completely bizarre diets and end up with severe malnutritional states. I have known two examples directly: one person believed that he could live only on cottage cheese, and another was eating kilogrammes of parsnips every day in the belief that that would cure her disease, and ended up with quite severe metabolic disturbances.
The problem with the amendments so far is that they fail to exclude the voluntary stopping of eating and drinking that is designed deliberately to make you terminally ill. I mention, if I may, the problem of T1DE—that is, a type I diabetic with an eating disorder. Lesley and Neal lost their young daughter Megan at Dignitas, after years of inadequate treatment. I have permission to quote them. They said:
“Following inadequate and inappropriate in-patient and community treatment for T1DE, our daughter chose to take her own life after asking for a Dignitas referral from her care team. She clearly would have taken up the assisted dying option if available to her, however, just before she committed suicide she said ‘I don’t really want to die, I just can’t do this any more’”.
That illustrates the real difficulty for young people with disorders that are on the boundary here. I hope that we can build on these amendments on Report to make sure that they really are watertight.
Lord McCrea of Magherafelt and Cookstown (DUP)
My Lords, I support Amendments 89, 91, 92, 101 and 103. Surely we need to demonstrate that what we term safeguards in the Bill against voluntarily becoming terminally ill are adequate and do not allow for voluntary acts to accelerate the timeline or even to create eligibility for assisted suicide. There seems to be a lack of clarity between terminal illness and eating disorders or voluntary action, which could undermine the very structure of the Bill itself.
Does the noble and learned Lord, Lord Falconer, in his Amendment 87, not row back on Kim Leadbeater’s previous amendment in the Commons? It seems that this amendment is significantly narrower. Can a suicidal person, dependent upon insulin or dialysis to remain alive, refuse that treatment and become eligible under the Bill? However, if he believes that cases of voluntarily withdrawing life-sustaining treatment such as insulin to voluntarily induce a terminal illness should not be eligible under the Bill, why does he oppose amendments that would close that loophole?
Baroness Gerada (CB)
My Lords, I am completely in favour of Amendment 87. I have permission to use the name of my patient, Melanie Spooner, who died from anorexia nervosa—she died from taking her own life. The end point of anorexia nervosa is often that the patient wants to die. As such, it is a terrible mental illness, and I think that not conflating and excluding this group is absolutely the right way forward.
One other issue has been bothering me ever since I have been coming to these Fridays: it is the conflation of the words assisted suicide with assisted death. For a decade now, I have been looking after those bereaved following the death by suicide of their loved ones, and I have about 100 people whom I care for. Suicide is often a violent act; it is often an act done alone and it is often done to punish people—I am terribly sorry if anyone here knows people who have killed themselves. It is a very prolonged bereavement, and a very complicated grief that affects up to 60 to 70 people in its wake.
Assisted death, as we have heard from the group that came from Australia, can sometimes be filled with hope and sometimes with joy, with family around for those last moments. It affects both groups: those whom I look after, who have been bereaved following suicide, and the relatives of those who have taken voluntary assisted death. It is such a small thing, but it really grates, and it is one of the most inappropriate and irresponsible ways of conflating the language.
Baroness O'Loan (CB)
Before the noble Baroness sits down, can I ask her whether she is aware that recent research has shown that 42% of people think that assisted death is actually the provision of palliative care, and that it is actually quite important to distinguish between the two?
Baroness Gerada (CB)
I was not aware of that research. The evidence shows, and we heard it from the Australian group, that where voluntary assisted death is in place, the provision of palliative care is improved. In Australia, a great deal more resource was put in to providing palliative care. My point, however, is: please can we no longer conflate the language of assisted suicide with that of voluntary assisted death.
Lord Moore of Etchingham (Non-Afl)
My Lords, I of course agree with the noble Baroness, Lady Gerada, that there are many different motives for killing yourself, but we are talking about making a law here. It is very important that the natural and ordinary meaning of words is established and preserved. Suicide means killing yourself, and what is proposed in the Bill is killing yourself with assistance. It is very important to keep explaining that to people, because otherwise they will be permanently misled about what is actually happening.
Baroness Hayman (CB)
My Lords, the noble Lord says that we should understand the ordinary meaning of words, and I agree with him. I must say to him, however, that my own mother—who turned her face to the door and stopped eating and drinking—did not commit suicide. We did not feel that. She was at the end of her life, she was terminally ill and she decided that she had had enough. She did not want the next blood transfusion, and she did not want any more time. I find it really offensive to be told that she committed suicide.
Baroness Fox of Buckley (Non-Afl)
I also want to respond to the noble Baroness, Lady Gerada. Words do matter, which is why plain speaking matters. Being told that you cannot say certain words because they might offend someone is unhelpful. Can the noble Baronesses respond to the fact that, in opinion polling, if people are asked whether they support assisted dying, many will say yes? If they are asked whether they support assisted suicide, they say no. In other words, calling something what it is—namely, suicide—is not necessarily something that the noble Baronesses should be frightened of. They cannot instruct us as legislators to do the job of spin doctors in trying to make something more palatable by using kind words. We have to be honest with the public and then they will decide; it is up to them.
Baroness Whitaker (Lab)
Does the noble Baroness, Lady Gerada, agree that the cardinal difference between suicide and voluntary assisted death is that voluntary assisted death applies to people who are already dying? There is no way that they are going to survive, and that seems to make the whole difference. What we seek in this Bill—and I very much support the safeguard proposed by my noble and learned friend in Amendment 87—is that the process of dying should be free from terror, pain and humiliation. It will not stop the person dying. Therefore, it is not suicide.
Lord Moore of Etchingham (Non-Afl)
Perhaps I may follow up on the very sad story from the noble Baroness, Lady Hayman, of her mother and how she died. This would not be considered to be suicide under the law, as I understand it. As has been discussed quite a lot during this Bill, refusing treatment is not suicide.
Baroness Hayman (CB)
I understand that, and I understand that my mother would not have been considered to have committed suicide. What I am trying to say is that her desire for her life to end, and the method that she took to do that, was not assisted dying. That was not available to her and it did not come into the equation. On the categorisation of that as suicide, and this Bill is being called “assisted suicide”, I agree with the noble Baroness, Lady Fox, that we have to be clear. It is not that I am taking offence; I think that it is wrong to categorise people who wish their life to come to an end—and who therefore refuse treatment and food, or who choose assisted dying under the provisions of this Bill—as in some way committing suicide.
Baroness Finlay of Llandaff (CB)
My Lords, I wonder if I might briefly apologise to the Committee. I was reading a quote—they were not my words. The quote was about a young woman who was said to have committed suicide. If we are going to be respectful of everyone, we must drop the word “commit”. It is not a crime to end your own life. I know that, for the relatives of those who have taken their own lives by suicide, the term “commit” can be deeply offensive. But as many people in this Committee will know, when you have experienced the suicide of someone very close to you, it lives on, in the way that a death also lives on in the person left behind. But I apologise, because it was a quote I was reading, and I think we should return to the topic of the amendments before us, if we may.
Baroness Berger (Lab)
My Lords, I am going to do as the noble Baroness, Lady Finlay, has requested and carry on with the group of amendments before us. To echo the sentiment just expressed about the language we use in this place—and it does matter—there are Members on all sides who have used the term “commit suicide”. Suicide is no longer a crime or a sin and, on that basis, for people affected by suicide and those left behind, it is a good reminder that we should all endeavour wherever possible, as the media tries to do outside this place, not to use that terminology.
In reference to one of the points just made by the noble Baroness, Lady Gerada, we will come back to these issues in some later amendments. Complicated grief can arise from an assisted death, and I shall propose some amendments to address that and to think about the people who are left behind. We certainly have evidence of that in other jurisdictions. We also know that adverse complications can arise from the drugs people ingest through an assisted death, which can have far-reaching consequences for the people left behind. We will debate that later.
As a signatory to Amendment 87A, I welcome the fact that these important changes will be accepted, along with Amendment 87. However, I want to add some additional information. It is important to acknowledge that these amendments do not address all the gaps connected to eating disorders. There is no protection for people whose eating disorders may bring them within scope of the Bill’s definition of terminal illness in other ways. That includes refusing treatment rather than food, which is addressed in Amendment 92, which I do not believe the sponsor would accept at the moment, or a person with bulimia sustaining damage to their organs through vomiting.
Why does this matter? We have talked about anorexia, which is a fatal disease and one of the mental health conditions that leads to the greatest loss of life through mental illness. However, it represents only a minority of eating disorder cases in the UK. A large population study published in 2017 found that anorexia accounted for just 8% of eating disorder cases. We know that bulimia is far more common, but it can also be fatal, with well-established risks including sudden cardiac death, severe electrolyte disturbance and rupture of the oesophagus. The amendment rightly focuses on anorexia but, as someone who is a signatory to Amendment 87A, I acknowledge that we must do everything to provide protection to all people with eating disorders in this country, including bulimia.
Baroness Parminter (LD)
My Lords, I rise to speak to Amendment 101, which I drafted to try to close the dangerous loophole in the Bill whereby people with eating disorders could qualify for an assisted death, contrary to the intent of the sponsors to limit the Bill to people with a terminal life-limiting illness. That there is a raft of amendments on this matter shows that the Committee recognises that that loophole exists, which is welcome; indeed, I welcome all the amendments in this group.
My focus has consistently been on the deadliest of all eating disorders—that of anorexia, as was so well articulated by the noble Baroness, Lady Hollins. My particular worry with the Bill as it stands is that, if treatment is delayed, withheld or withdrawn, the physical health of people with a mental illness could deteriorate to a life-threatening degree. They would therefore then be subject to the provisions of the Bill.
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.
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.
Baroness Royall of Blaisdon (Lab)
My Lords, many points have been made around the Chamber about disability. The most recent large survey, carried out by Opinium in February 2024 of nearly 11,000 respondents in the UK, showed that 75% of the general population were supportive of the Bill and 14% opposed it. Of those who had a disability, 78% were supportive and 14% were opposed. It is very important to put those figures on the record.
Baroness Grey-Thompson (CB)
My Lords, Amendments 88 and 89 are in my name. I tabled them based on my experience in my former career as an athlete, where I knew a significant number of men and women who had varying degrees of eating disorder. I probably had disorderly eating behaviour rather than a diagnosed eating disorder. I very carefully managed and adjusted my eating to try to achieve my goals.
As an athlete, you have a number of measurements. You have your skinfolds measured several times a year; the amount of fat you have in your body is measured. Keeping your funding going is dependent on having low results, as well as on your performance measures. I competed in a sport where power to weight was really important. My race weight, as an adult female, was 45 kilograms—about the same weight as an 11 year-old girl. I had to keep to that weight because I had a very expensive chair built around it.
In the process of training, I vomited regularly. I cannot remember a dentist who has not asked me, very directly and with no particular care around me, “Are you bulimic?”, because my teeth show signs of bulimia. If I was, I do not think that would have been the way to address it. I have had a very close friend who became very ill with anorexia. You are in this impossible situation of trying to help, support and guide them through. It is a terrible thing for people to go through.
That is why I find it slightly extraordinary that we are still having to deal with these questions today in the Chamber, because the danger of this Bill to people with eating disorders was first raised on 30 October 2024. Eighteen experts, including leaders of the Royal College of Psychiatrists’ eating disorders faculty, signed a letter to the BMJ saying that the Bill
“fails the public safety test”.
Since then, the issue has been pointed out in oral evidence to the Public Bill Committee by Chelsea Roff, it was discussed in Committee in the other place, the Bill has been amended with support from the Commons sponsor on Report and the issue was raised by a coalition of eating disorder charities in two open letters and by the Complex Life and Death Decisions group at King’s College London. However, I think it still has not been resolved—as the noble and learned Lord, Lord Falconer, presumably agrees, because he has tabled an amendment in this group to fix the issues.
Last week, we discussed in-person assessments and several noble Lords noted that the honourable Member for Spen Valley, Ms Leadbeater, had identified Zoom consultations as a potential problem and said she was considering an amendment, but the issue had never been resolved. Something analogous has happened with eating disorders. Everyone knows that there is a problem, but nobody has found a way of fixing it. This is significant, first, because it shows why this whole process is taking longer than it might have needed to, and, secondly, because it is unclear how the sponsor wants us to interpret Amendment 87.
Baroness in Waiting/Government Whip (Baroness Taylor of Stevenage) (Lab)
My Lords, we have agreed noble Lords would benefit from a short lunch break. It is going to be some time before this group is finished, so this seems the most convenient point to take a break. Therefore, I beg to move the debate on this amendment be adjourned. Colleagues in attendance should make sure their name is registered at the Table for the continuation of the debate after lunch.
Baroness Merron (Lab)
My Lords, I am grateful to noble Lords for their contributions to this debate. Amendment 87, tabled by my noble and learned friend Lord Falconer, the sponsor of the Bill, would clarify the intention of the current Clause 2(2), which is to prevent someone becoming eligible for an assisted death due to an eating disorder. Amendment 87 replaces Clause 2(2). The Bill’s sponsor in the other place indicated that they would look to improve the clarity on who is and who is not eligible in this clause. The noble Lord, Lord Harper, asked about interpretation. I hope those comments will be helpful, because the eligibility of people with eating disorders under the Bill is, of course, a policy decision, not one for government. I am sure that my noble and learned friend heard the noble Lord’s point.
This amendment, as is usual practice, has been drafted with the technical support of the Government, within the policy intent of the sponsor and of the other place. The amendment excludes from the definition of “terminally ill” any illness or disease caused by the person not eating or drinking, where not eating or drinking occurs as a result of a mental disorder. It also makes it clear that this expressly covers cases of limited eating or drinking. Given that Amendment 87 replaces Clause 2(2), if noble Lords accept it, a number of the other amendments in this group will, of course, fall away.
I turn to detailed comments on amendments that the Government consider have major legal, technical or operational workability concerns. Amendment 89, tabled by the noble Lord, Lord Polak, would lead to a person not being considered terminally ill under the Bill solely as a result of withdrawing medication, hydration or life-sustaining devices. Amendment 91, tabled by the noble Baroness, Lady Finlay, would mean that those whose refusal of nutrition is due to a mental illness would not be considered terminally ill under the Bill.
Amendment 92, tabled by my noble friend Lady Debbonaire, would exclude a person from eligibility if their terminal illness was
“solely as a result of standard medical treatment being refused or withheld”.
This amendment could have the potential undesirable impact of undermining a person’s autonomy and right to make informed choices about their own medical care. The definition of “standard medical treatment” is unclear here: the exclusion from eligibility could apply to a patient who refuses one standard medical treatment in favour of an alternative standard medical treatment. A refusal of standard medical treatment would mean that a person would become ineligible for ever, even where their refusal had no impact on their prognosis.
Amendment 101, tabled by the noble Baroness, Lady Parminter, would prevent people with physical effects or complications of a mental disorder being eligible for an assisted death. This may be difficult for clinicians to apply, as “physical effects” is an undefined term. The current drafting also layers a “for the avoidance of doubt” provision on top of another “for the avoidance of doubt” provision, which could lead to ambiguity about how the legislation should be interpreted. I heard the noble Baroness say that she was concerned about the drafting, so I hope those comments will be helpful to her.
Amendment 103, tabled by the noble Baroness, Lady Fox, would remove from eligibility people who, because of the effect of a mental disorder, refuse life-saving treatment and develop a terminal condition. Where amendments limit eligibility for specific groups, they could give rise to legal challenge under Articles 2 or 8, with Article 14, of the ECHR if such restrictions are not objectively and reasonably justified. As I have said, it is for noble Lords to consider the amendments in that light, should they wish to.
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.
Baroness Finlay of Llandaff (CB)
Would the noble and learned Lord consider the T1DE group? Eating disorder charities recognise not only that this is a serious group but that it has a very high mortality rate.
Lord Falconer of Thoroton (Lab)
Of course I will consider it.
Amendment 88, in the name of the noble Baroness, Lady Grey-Thompson, is an amendment to Clause 2(2), which will go, in the light of Amendment 87. Amendment 89 is in the name of the noble Lord, Lord Polak, but was spoken to by the noble Lord, Lord Empey, who is, sadly, not in his place. It would make ineligible those who withdraw
“medication, hydration, or life-sustaining devices”.
Hydration is covered already by Amendment 87, which is coming. I am not in favour of the changes in relation to withdrawing medication or life-sustaining devices because, as I said on the first group, it is generally for the patient to decide what treatment to have. If, for example, they do not wish to have a difficult further round of chemotherapy, they should be allowed to make that choice. If, for example, they have MND, and they wish to be taken off the respirator, they should be allowed to do so as well. Unfortunately, I therefore do not support those amendments.
Amendment 91, tabled by the noble Baroness, Lady Finlay of Llandaff, which would insert
“where the refusal of nutrition is a result of mental illness”,
is now covered by Amendment 87.
Amendment 92 would insert:
“A person who would not otherwise meet the requirements of subsection (1)”—
that is, the definition of terminal illness—
“shall not be considered to meet those requirements solely as a result of standard medical treatment being refused or withheld”.
I dealt with that in a previous group. If it is a case of type 1 diabetes or dialysis then you do not make yourself eligible by refusing that. I do not think that any further change is necessary.
Amendment 101, in the name of the noble Baroness, Lady Parminter, would insert:
“For the avoidance of doubt, the physical effects of a mental disorder, such as an eating disorder, would not alone make a person eligible to meet the conditions in subsection (1)(a) and (1)(b)”.
That is what provoked the change in Amendment 87. I appreciate that the noble Baroness, Lady Parminter, is the person responsible for the change, and that she has supported our amendments.
Finally, Amendment 103, tabled by the noble Baroness, Lady Fox of Buckley, addressed those who would refuse treatment as a result of a mental illness, and then that refusal leads them to be eligible. I am not in favour of the amendment for two reasons. If you have refused treatment because of a mental illness, you would not have had capacity to refuse treatment in the first place. Suppose that, as a result of a mental illness, you ended up not getting treatment for something and now, with complete capacity, your cancer is much worse than it would otherwise have been. Should you be denied an assisted death if it is otherwise available? In my view, you should not.
Baroness Berger
Member's explanatory statement
As the Bill includes two extended periods for reflection, this amendment would disapply section 3(3) of the Mental Capacity Act 2005, which provides that the fact that a person is able to retain the information relevant to a decision for a short period only does not prevent them from being regarded as able to make the decision.
Baroness Berger (Lab)
My Lords, I support of Amendments 107, 108 and 109, in the names of my noble friends Lord Hunt of Kings Heath and Lord Rook, who are unable to be with us today for good reasons. These amendments go to the heart of a question the Committee must answer honestly: what level of capacity is required for the state to assist a person to end their life, and, crucially, is the existing framework of the Mental Capacity Act 2005 sufficient for a decision that is irreversible, permanent and final?
Amendment 107 addresses a specific but serious problem. Section 3(3) of the Mental Capacity Act provides that a person may be regarded as having capacity even if they can retain relevant information only for a short period. That may be entirely appropriate for many decisions in everyday life, and even for some serious decisions. However, this Bill requires something very different. It requires a person to form, retain, reflect upon and reaffirm a decision to die over an extended period—potentially weeks or months. If someone cannot retain the relevant information beyond a short period, they cannot meaningfully engage with the reflection periods that are built into the Bill. This amendment would therefore disapply Section 3(3) of the Mental Capacity Act for the purposes of assisted dying alone, recognising that the bar for deciding to die must be higher than for any other decision.
Lord Markham (Con)
As the noble Baroness herself said, we debated both deprivation of liberty and the Mental Capacity Act and its use extensively—I think it was on 14 November—and I believe the sponsor, the noble and learned Lord, Lord Falconer, agreed to look at extra safeguards around deprivation of liberty, being aware that there are many items we are all hoping to get through.
On the length of this debate—obviously, it will be up to noble Lords to decide how much time they want to take—we have covered these areas to a large degree, so what does the noble Baroness hope for in terms of the extensiveness of the debate this time? Does she hope that we can refer back to the previous debate and move quickly to get the response from the sponsor?
Baroness Berger (Lab)
I endeavoured to keep my remarks brief, and I believe I did so, taking under five minutes. The point of the amendments is very specific, around eligibility, which we had not discussed. We talked more broadly about the concerns around the Mental Capacity Act, but not specifically in the context of capacity. Obviously, we listened closely to the sponsor of the Bill’s response to the earlier debate, and the point raised in these amendments was not in any way addressed. These are additional points, beyond the principle and the wider concerns about people who are under deprivation of liberty and those who will be considered under the Mental Capacity Act. Clearly, we have listened to the experts, who have raised many concerns about the Mental Capacity Act, but the purpose of these amendments is to address eligibility.
I hope that the sponsor of the Bill will give us some more colour and detail about amendments he might come forward with on Report. But we have been in Committee since the middle of November, and in the absence of anything so far coming forward from the sponsor on the Mental Capacity Act and deprivation of liberty safeguards—I think this speaks to the concerns of many in this House—we are therefore compelled to bring forward these amendments to raise these issues. If something did come forward, that might enable us to withdraw future groups of amendments altogether, and maybe that will be the case. I look forward to the sponsor’s response.
Lord Falconer of Thoroton (Lab)
It may assist in the light of that exchange if I indicate what my position is. We had a debate some weeks ago about the question of people who had had their liberty deprived within the preceding 12 months. That would obviously include those who were still the subject of a DoL order or a DoL application, and the noble Baroness’s amendment refers to a number of other categories as well, which are similar and which I think would be included. I indicated explicitly in the debate that I think it would be appropriate for me to bring forward explicit extra protections in relation to those people, and in particular, those extra protections might include a specific compulsory further psychiatric examination for that purpose. I have been in discussions with various people in the House in relation to that, and I am seeking advice from officials and others so that I will be able to bring forward proposals on Report. I hope that very much helps my noble friend Lady Berger.
Baroness O’Loan (CB)
My Lords, as a consequence of our earlier debates, as the noble Lord, Lord Markham, said, we know that in the context of applications for assisted suicide, the Mental Capacity Act, which is to be used for determining capacity, would permit an unwise decision—we have all agreed on that—even if driven by depression, loneliness or despair. We know that it would treat brief retention of information as sufficient even when the Bill requires a clear, informed and settled wish, and even though we know that, in cases of dementia, 76% of patients who refused life-saving treatment while delirious have no memory whatsoever of having done so 24 hours to 72 hours later.
Another study found that more than 60% of patients who voiced a wish to die during a bad day had no recollection of it when mood or cognition improved. People who cannot retain or consider information on their choice the day after making it will not be able to avail themselves of the cooling-off period, which is for contemplation about what is proposed. They will be in a very dangerous position, especially if their particular condition leaves them suggestible to options offered to them by those who care for them professionally, in whom they will probably place great trust.
The Mental Capacity Act also imposes a duty to support decision-making, which in this context risks becoming a duty to facilitate a decision to die. The Mental Capacity Act says that capacity expressly includes making an unwise decision, even if it would be irreversible and total self-harm. Alex Ruck Keene said in giving evidence that “if you simply read across the Mental Capacity Act, there is a duty on all the people carrying out the assessments to seek to support the person to have capacity to end their own life.”
We also know that it will rely on time-specific capacity, despite the Bill requiring consistency across all these stages, from one, two, seven, eight and so on. The reality is that the only one that requires an interaction between the doctor and the patient is the first one. The rest of them are exercises that may not involve any consultation with the patient who is making the application, let alone a face-to-face engagement. The Bill purports to introduce a statutory framework for determining capacity, but it does not do so in reality because the MCA is designed to test when a person cannot make a decision, not whether someone is capable of doing so. I hope that the noble and learned Lord, Lord Falconer, will accept the intent of these clear and effective—
Lord Falconer of Thoroton (Lab)
The noble Baroness suggested that the only interaction will be with the first doctor. She will be aware that Clause 12 requires both doctors to examine and have discussions with the patient and she will also be aware that, under normal, though not all, circumstances, the panel must speak to the patient—unless there is an exceptional reason why they should not.
Baroness O'Loan (CB)
Those are both qualified as exceptions. I will carry on.
Lord Falconer of Thoroton (Lab)
It is exactly the same for the co-ordinating doctor and the independent doctor. I am not clear what distinction the noble Baroness is making between the two. Perhaps she can explain to the Committee.
Baroness O'Loan (CB)
I will revert to the Bill and come back to the noble and learned Lord in due course. If I am wrong, I apologise.
The noble and learned Lord has committed, in your Lordship’s House, to build special protection for those currently or recently subject to a deprivation of liberty order, as raised by the noble Lord, Lord Markham, but the detail has not emerged. What will the specific protections be? Will there be an outright ban for those, for example, under DOLs or in prison? In Committee on 16 December, the noble and learned Lord said that, where somebody has made an application that a person’s liberty be taken away because they are seriously mentally ill or lack capacity, or a person has actually been deprived of their liberty, special provision should be made. I know the noble and learned Lord has said he will make provision, but time is passing and we still have no indication what that provision must be.
Previously, on behalf of the Government, the Minister noted that denying those under DOLs access to assisted dying might later be interpreted by a court as a breach of ECHR obligations. I would like to ask the Minister what the Government’s view is as to the minimum protection that must be offered to those deprived of liberty and susceptible to suicidal ideation if the Bill is to be compliant with the Government’s obligations under the Human Rights Act and the ECHR.
The presumption of capacity in the Bill may result in the acceptance of unwise decisions by those who will have forgotten about them the very next day. We know that clinicians and practitioners want clarity and certainty; they do not want to be left repeatedly in situations in which they must exercise their discretion. All the professional bodies have told us that. The risk of litigation, or intervention by a regulator or the police, would inevitably exercise the minds of those who act professionally. Without clear rules, the system cannot work; things will fall apart.
The Bill provides for a period of reflection once a decision is made to allow someone carefully to consider the choice involved, weighing all the information again and thinking over this life or death choice. The noble and learned Lord and the Chief Medical Officer have claimed that the MCA requires a higher threshold for life and death decisions. Legal experts, including Alex Ruck Keene KC, confirm that the Act contains no such stipulation; it does not provide a higher threshold.
Baroness Butler-Sloss (CB)
My Lords, it is usually necessary to have a rather greater capacity to make a will than to get married, which may perhaps be rather surprising. I am concerned about two groups of people: those with intermittent dementia who from time to time appear to be entirely normal and then the next day cannot remember anything that has happened, and people who are sectioned under mental health legislation.
Some years ago there was a famous case about someone who was sectioned. It was intended, in his best interest, to amputate his leg, but he absolutely refused. He was allowed to have the capacity to make that refusal, and in the end it was not necessary to amputate his leg. Consequently, it is quite tricky to determine whether that group of people who have been sectioned under mental health legislation will be seen to have sufficient capacity under the Mental Capacity Act.
It would be extremely helpful if the noble and learned Lord, Lord Falconer, could provide us, before Report, with what he sees as the changes that might be achieved to give special status. If he does not do that, we will spend a lot of time, all over again, on an issue that probably could be dealt with fairly quickly.
The Lord Bishop of Newcastle
My Lords, I will speak to Amendment 108, to which the right reverend Prelate the Bishop of Lincoln has added his name. He regrets that he cannot be in his place today, as he is interested in this amendment as lead bishop for the L’Arche community in the UK. With the Church of England, L’Arche strives to provide a positive and inclusive residential community in which adults with and without learning disabilities can live and grow together.
Health inequalities come into focus for much of the Bill. As we heard in the Select Committee on the Bill, people with learning disabilities experience significant inequalities in health outcomes. The learning disabilities mortality review found that 40% of the deaths of individuals with learning disabilities in 2023 were linked to avoidable, treatable or preventable causes—double that of the general population. As we heard from Ken Ross on behalf of the National Down Syndrome Policy Group, people with Down syndrome are likely to die 27 years earlier than their peers. He highlighted
“a systemic direct and indirect bias shown within the health service, which could also be linked to a lack of understanding of the needs, wishes, health, learning and communication profiles of this particular group”.
That bias is linked to what other people feel a life worth living is like, sometimes pejoratively described as a life without dignity.
We have heard about the high suggestibility of some people with learning disabilities, and the discrimination they face both in and outside the healthcare system. This is closely linked to capacity. It is clear that additional protections are needed for this group, which is why due consideration should be paid to this amendment.
Viscount Colville of Culross (CB)
My Lords, I apologise: this is the first time I have spoken on the Bill. I have added my name to Amendment 115 in the name of my noble friend Lady Finlay. My concern is that, as other noble Lords have told the Committee, the Mental Capacity Act has the presumption that, if in doubt, the doctors making the assessment of the patient’s mental capacity have to assume that they have the capacity unless proved otherwise.
As other noble Lords have also said, if the patient is deciding whether to go into a residential home or what to do about their financial affairs, that is fine. But I am convinced that a terminally ill patient should have to prove that they have the mental capacity to make the gravest decision possible: that of ending their own life. I would like their doctors to have to decide that the patient has the mental capacity to make such a huge decision. Amendment 115 sets out a list of tests to help the doctor come to that conclusion.
To find out the importance of the changes to the Bill put forward in Amendment 115, noble Lords have only to look at jurisdictions where the default position is the presumption of mental capacity. Canada has already been raised by the noble Baroness, Lady Berger, with very good reason. In some provinces, such as Quebec, 8% of all deaths are by assisted dying, and on Vancouver Island, which has lamentable palliative care, the percentage rises to 11%. These, in my view, are big numbers.
I am concerned by the Canadian definition of mental capacity, which, as with our own Mental Capacity Act, emphasises that every person is presumed to have mental capacity unless proved otherwise. In the early stages of dementia, this can lead to cases of people being assumed to have mental capacity for assisted dying, or MAID as it is called in Canada, even when they are confused about the implications of the decision.
I have spoken to a number of Canadian doctors and psychiatrists, who gave me worrying examples of this happening. One doctor told me they had a male patient in his mid-70s with prostate cancer who had been diagnosed with mild dementia. He was admitted to hospital for worsening confusion. Medical investigations were undertaken to determine whether this was delirium on top of the dementia or worsening dementia. During the admission, and before the cause of the worsening condition had been determined, he stated that he wanted to be left alone and that he wanted to die, so the MAID team were called.
The MAID team deemed him eligible for the process, but then the palliative care team were also called. The doctor I spoke to was the patient’s consultant on this team. She interviewed the patient and he told her that he wanted hospice care and palliative treatment. She concluded that he could not differentiate between being sent to a hospice for palliative care and having a lethal injection to immediately end his life. But the MAID team still assumed that he had the mental capacity to go ahead with his first decision to have assisted dying. When they asked him subsequently whether he wanted medication to help him to die, he agreed to it. MAID was carried out shortly afterwards.
I would like the Bill to ensure that there is no confusion about whether such terminally ill patients have the capacity needed for this huge decision. I suggest that Amendment 115’s proposed subsections (1) and (2), which would reverse the presumption of mental capacity, would prove a much better safeguard.
I also draw your Lordships’ attention to whether having a doctor raising the option of assisted dying to a terminally ill patient is regarded as treatment, a matter on which the Minister in the other place said the Government were silent. Proposed subsection (6)(g) of Amendment 115 states that
“the self-administration of such a substance is not a medical treatment for their terminal illness but a personal choice concerning life and death”.
I know that amendments to Clause 5, if accepted, would have the same effect, but I argue that it would be a belt and braces to have the concept that the doctor cannot, unprompted, raise the option of assisted dying in the mental capacity clause of the Bill. It is important that the request for assisted dying is initiated by the patient and is not seen as a treatment initiated by the medical team.
Once again, I turn to the experience in Canada, where doctors and healthcare professionals are duty-bound to raise assisted dying as an option for any patient admitted to hospital who suffers from a condition that makes them eligible for MAID. I spoke to the doctor of a Canadian patient who was found to be eligible for MAID and went into hospital. Each medical professional who visited him offered the option of MAID, alongside the option of drugs to alleviate his condition. This meant that on the day of going into hospital, he was offered MAID six times by six different medical professionals. Each medic was aware that if they did not offer the option, because MAID is classed as a medical treatment, they would be sued for negligence. I fear this will put unnecessary pressure on patients.
Obviously, the eligibility for MAID in Canada is very different from that proposed in the Bill, but Canada is still an important lesson for us. In this country, it is imperative that it is left up to the eligible patient to initiate the request for assisted dying. The amendment would ensure that doctors are not forced to initiate the request, which would avoid the patient feeling any pressure to end their own life. I hope that the amendment will be accepted. It would provide safety rails for patients eligible for assisted dying.
Baroness Finlay of Llandaff (CB)
My Lords, I am grateful to the noble Viscount, Lord Colville, for having spoken so clearly and eloquently to Amendment 115, which I tabled because it was suggested by the Complex Life and Death Decisions group at King’s, with particular input from the eminent national expert on mental capacity law and practice, Professor Alex Ruck Keene KC.
The amendment aims to provide clarity for doctors who are going to make the decisions as gatekeepers on the process. The amendment is necessary for two reasons. Let us remember that the Mental Capacity Act was written to prevent someone from doing something to you that you did not consent to. When you are unable to decide whether or not somebody can do something to you, you fall into the best interest decision framework, but that will never apply in this situation.
The amendment is necessary, first, to comply with our obligations under the ECHR and, secondly, to make the test of capacity enshrined in the MCA fit for purpose within the scheme of the Bill. The amendment is compatible with the Mental Capacity Act. It would not create a different process but would clarify that the point made in the letter from Sir Chris Whitty, following his evidence, is adhered to. He said that
“there is a clear need to have capacity for the particular decision that is to be taken. It follows that the more complex the decision the more the individual will need to be able to weigh the consequences and an assessment of their ability to do this is a key part of assessing whether or not they have capacity”.
We must not lose sight of the fact that the decision to take one’s life is the most momentous decision and is irreversible. It therefore requires a higher standard than the myriad other decisions that people take in the context of health and social care or finance.
The state’s obligations under Article 2 of the ECHR are to
“prevent an individual from taking his or her own life if the decision has not been taken freely and with full understanding of what is involved”.
That was the verdict in Haas v Switzerland in 2022. The amended Clause 3, as tabled, would discharge the state’s obligations by ensuring proper consideration of their capacity and that they have a full understanding of what the receipt of assistance in dying involves. However, the MCA does not work in the context of the Bill, as it would mean that unresolved doubt would compel the conclusion that the person had capacity to decide to end their life and oblige those assessing the person to support the person in that decision.
Amendment 115 would maintain the test of capacity with which practitioners are familiar but enable them to apply that test within the framework of the Bill. It would therefore constitute not a further hurdle but an appropriate framing. It borrows language from the MCA where appropriate, as in subsection (2). That language is familiar to anyone who has used the Mental Capacity Act. Like other amendments in this group, it would remove the inherent dangers of the presumption of capacity that others have spoken of.
Lord Falconer of Thoroton (Lab)
I apologise for interrupting. Just so that I am clear, is the noble Baroness, Lady Finlay, making the point that if we use the provisions of the Mental Capacity Act to determine capacity for assisted dying, we are breaching the ECHR? I think that that is what she is saying.
Baroness Finlay of Llandaff (CB)
The noble and learned Lord is correct that that is a challenge that has been put forward—that, as the Bill is currently written, that may be the case, but Amendment 115 would correct that.
Baroness Hollins (CB)
My Lords, it is a pleasure to follow my noble friend, who has presented a different approach to assessing capacity. I was a member of the post-legislative scrutiny committee on the Mental Capacity Act. Both in my professional capacity as a learning disability psychiatrist and as a family carer, I have observed the misapplication of the Act on rather too many occasions. It is quite a complicated Act and it is often misunderstood. I have serious concerns about its applicability and appropriateness for this purpose. I recently co-authored an editorial on this subject in the journal BMJ Supportive and Palliative Care. My Amendments 117 and 892 propose a bespoke decision-making framework, designed specifically for assisted dying, which would of course need to be evidenced in practice.
As the mother of a neurodiverse son, I share the concerns expressed by the honourable Member Daniel Francis in the other place. He is the parent of a daughter with a learning disability, and said:
“The concern that haunts me every single day is, ‘Who will make, and how will they make, those decisions to support my daughter when my wife and I are gone?’ That concern, shared by thousands of others, led me to the conclusion that the Mental Capacity Act 2005 was not written for this scenario”.—[Official Report, Commons, 16/5/25; col. 691.]
As a parent myself, I completely identify with what he said. I really worry about the suggestibility of so many people with learning disabilities and the possibility that they might be offered an assisted death. I think they should probably not be eligible. For example, they might mask their lack of understanding. If you ask my son whether he wants to do something, and if he understands it, he will be delighted to say that he does, when I know he has not got a clue. He wants to be consulted and invited and to participate and to have the same opportunities as everybody else, when he does not have the first understanding of what actually he is being offered. That is the reality of living day by day with somebody who does not understand. It is really difficult to know.
From my research looking at the Netherlands data, we found quite a significant number of people who have been offered euthanasia, and have been euthanised, for whom a capacity assessment had not been done, certainly not by anybody who had any actual experience of working with neurodiverse people. This is just not acceptable.
The Mental Capacity Act was designed to support and protect people when they lack decision-making capacity. Conceptually, it is a deficit-based framework intended to identify the absence of capacity so that decisions can lawfully be made on a person’s behalf and in their best interests. It begins from a presumption of capacity, and only if there is a justifiable reason for doubting capacity for a specific decision at a specific moment is there any requirement to assess the person’s understanding. There is no such thing as being “capacitous” or “incapacitous”. The Bill, as written, requires capacity to be demonstrated, but this contradicts the presumption of capacity in the Act and creates a legal inconsistency. The Bill does not resolve these ambiguities, leaving it unclear whether professionals are expected to apply the Mental Capacity Act as a deficit-based framework or to repurpose it as a positive authorisation tool.
The Royal College of Psychiatrists has serious concerns regarding the use of the Mental Capacity Act and recommends a formal review of its suitability as the decision-making framework for assisted dying, which is why I have proposed an alternative. Assessing capacity is also inherently subjective and vulnerable to bias. Judgments are influenced by the assessor’s values, the context and the relationship with the person being assessed. These biases are likely to be amplified where assessments are undertaken by a limited group of professionals working in a context in which requests for assisted dying are framed as expressions of autonomy.
Such a setting risks subtly predisposing assessors towards affirmation rather than critical scrutiny, particularly where capacity is treated as something to be confirmed. An article published in the British Journal of Psychiatry this week by two prominent psychiatrists and psychotherapists highlights exactly this: the role that unconscious psychological processes play in decisions related to assisted dying. These influences are not currently being considered when assessing decision-making capacity but are extremely relevant.
Near the end of life, cognitive impairment is common and undermines genuine decision-making capacity. A patient may articulate clear preferences despite a compromised ability to understand, retain or weigh information. A study of hospice patients with no clinically obvious cognitive disorder of impairment, published in the American Journal of Geriatric Psychiatry, found that over half had significant previously undetected cognitive impairment on formal neuropsychological testing. In the same journal, another study of terminally ill cancer patients receiving palliative care found that cognitive impairment was common, with just under half showing impairment in understanding and appreciation, and around four in five showing impairment in reasoning. Importantly, there was poor agreement between the physician’s judgment of capacity compared with more structure neurocognitive testing.
Those and other studies show that evidence-based structured assessments are essential in end-of-life context for decisions with irreversible consequences. It is inappropriate for the Bill to require psychiatrists to assess capacity. We are trained to diagnose and treat mental illness as well as prevent suicide. There is no requirement in the general psychiatry specialty curriculum for expertise in assessing decision-making capacity or detecting cognitive impairment in terminal illness. So, requiring psychiatrists to confirm capacity in assisted dying means treating a wish to end one’s own life as an autonomous and valid choice in one context while continuing to regard it as a symptom of mental illness in another. What a confusing position to find oneself in.
Other professionals, such as practitioner psychologists, may be better positioned to evaluate decision-making in end-of-life contexts due to their expertise—a position supported by the British Psychological Society.
The Mental Capacity Act and the current approach to capacity in the Bill are not fit for purpose, which is why I have proposed a different approach. Obviously, this would require expert development and testing.
Baroness Lawlor (Con)
My Lords, I will speak in favour of my Amendment 110B, which would disapply Section 3(2) of the Mental Capacity Act, which, in effect, allows a person to be regarded as able to make a decision for himself
“if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means)”.
The amendment would also disapply—as would Amendment 107 from the noble Lord, Lord Hunt—Section 3(3) of that Act, which allows for the fact that
“a person … able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision”,
as was so ably addressed by the noble Baroness, Lady Berger.
I will focus on what is additional in my amendment. In seeking to disapply Section 3(2), I bear in mind the aims of the Mental Capacity Act 2005, which is designed to empower people to make decisions about their life, including their healthcare and treatment. I stress that there is a world of difference between deciding against a course of continued, often physically difficult and stressful, treatment and deliberately deciding to take a lethal substance to commit certain and sometimes brutal suicide.
To deliberately choose to inflict self-harm and suicide is a very serious matter. It requires a person to know and understand the difficult and complex components of such a decision; the physiological effects of taking a lethal substance; the consequences of death or, as we have heard, the potential survival with excruciating pain; the finality of such an irreversible decision; the questions that it raises for your family and friends; the implications for your children, grandchildren and siblings; the example and precedent that it sets for young and old alike; and the moral consequences for our society as a whole. Indeed, one consequence will be to chip away the foundations of the support that we rightly give to suicide prevention and people who are suffering from a terminal illness who want palliative support.
These are complex questions, as is each of the implications raised. Giving a downsized simplistic version of the information that is judged to be appropriate to someone’s circumstances might simplify the information to the extent that he may indeed appear to understand the information because he is given an explanation of it in a way that is appropriate to his circumstances. But that should in no way be taken to mean that the person is judged to have capacity for so momentous a decision as taking their own life.
Baroness Cass (CB)
I want to make two very brief points. First, I support the point made about proposed new subsection (6)(g), to be inserted by Amendment 115, by the noble Viscount, Lord Colville, on being clear about whether this is a medical treatment. If it is a medical treatment, it drives physicians continuously to ask people whether they would wish to receive assisted dying.
The issue is not just in Canada. A very close friend of mine recently died in the Netherlands. She was so persistently asked whether she wanted to consider euthanasia there that she chose to die in a Jewish hospice—the one place where they would not persistently ask her that question because they do not carry out euthanasia in that particular hospice.
I would like to make another, more broad point about Amendment 115, which I strongly support. We have frequently had Chris Whitty’s opinion cited on the utility of the Mental Capacity Act because of familiarity. I would say one thing about that. We were incredibly lucky to have Chris Whitty as CMO during the pandemic—cometh the man, cometh the moment—as we had an epidemiologist in post. But he is a specialist in that area. A friend of mine who is a forensic pathologist specialised in freshwater drowning, but once he got into the witness box he was fair game for any pathology question and was asked about the appropriate temperature at which bloodstains might be washed out of clothes. Having very little familiarity with that, he said, “Well, according to my wife”, causing the defence council to jump up and say that he could not say that because it was hearsay. My point is that, if you asked me who I was going to trust on the issue of capacity—an epidemiologist or my noble friend here, who has practised all her life in psychiatry—the choice for me would be very clear.
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”.
Baroness Grey-Thompson (CB)
My Lords, I rise to speak to Amendment 119 in my name and that of my noble friend Baroness Hollins. This seeks to insert a new clause to provide a mental capacity assessment for people with learning difficulties, and to have a clearer view of who would be able to carry out that assessment. The noble and learned Lord said last week that he would respond on this when we got to Clause 22. As we are discussing Clause 22 stand part in this group of amendments, I assume may he reply to me. I also wrote to the noble and learned Lord this week with a number of concerns; I will not read the letter out now, because it raises a few different issues. One of them was on the advocate. I understand that many noble Lords will not have seen that letter, so I will publish it.
Some of the issues that I am concerned about in this clause are around how important advocates are, and the safeguarding that they can provide. In another place, Daniel Francis MP tried to ensure that advocates were there as part of the decision, but that was voted down as an amendment. What we have now is something that I believe is somewhat weaker, because now an advocate has to be there only if instructed. It does not make it compulsory; it is optional. This seems to be a particular paradox, because somebody might not understand what they are turning down. I am not sure if that was what was intended by the noble and learned Lord.
In 2014, NICE held a public consultation to assess plans for new medical treatments to be given only to those deemed a benefit to society. Disabled people were not included in that. I wonder whether it was because NICE did not expect the response around disability to be terribly positive. In the equality impact assessment for the Bill, table 27 seems to suggest that there could be a saving to the NHS of £2,323 for every person with a learning disability who accesses assisted suicide. Will the noble and learned Lord confirm whether he reads that table in the same way that I do? Giving doctors the ability and the option to raise this with patients presents a serious risk of medical coercion. Negative judgments are made by professionals around the quality of deaf and disabled people’s lives all too frequently, as we saw with the “do not attempt resuscitation” notices that were put on disabled people during the pandemic without their permission or knowledge.
Written evidence submitted for the Bill by the All-Party Group on Down Syndrome said that most doctors
“do not receive adequate training in learning disabilities and Down syndrome”
and could
“misjudge capacity due to biases or lack of experience”,
which could lead to
“undue exclusion or unjustified inclusion in … discussions”.
We know that prenatal screening for Down syndrome and the pressure to terminate that comes after any diagnosis demonstrate the pervasive societal attitude that undervalues the lives of disabled people.
Studies from 2025 show that people with learning disabilities generally exhibit a high level of satisfaction with their lives, but that does not sit with the non-disabled peoples’ perception of those lives. I spoke recently to a nurse who works with people with learning disabilities who told me about their highly suggestible nature, which is why we have to put a lot of trust in those who work with people with learning disabilities. The example I was given was just over what somebody has for an evening meal: it was the case of an individual who always repeats the last thing they were told. On something very simple, given option A or option B for an evening meal, they will always pick option B. Whether they like that meal or not, they will pick it because they are so suggestible. This leads me to conclude that we have a failure to understand the reality of the lives of people with learning disabilities.
PubMed published an article in 2025 that looked at the Netherlands and reviewed 39 cases of those who had accessed the assisted suicide service because of intellectual disabilities or autism spectrum disorders. In 24 cases, the disability was the major contributing factor in the decision to ask for and grant the service. In 21% of cases, the only causes of suffering described were factors directly associated with intellectual disability or autism. I am sure that many of us have been contacted by people who are really worried about the impact that this could have on their families. I am afraid that, from my experience of working with people with learning disabilities—although not to the extent of my noble friend Lady Hollins—I am also very concerned.
Professor Irene Tuffrey-Wijne, a specialist in palliative care and the impact on people with learning disabilities, looked at studies in the Netherlands and at what is happening in the UK. She said that people with severe learning disabilities would not meet the criteria, but there is a real danger and risk for those with mild disability. In the UK, there is nothing in the proposed legislation to prevent a doctor raising the question and how it is offered. People with learning disabilities have internalised the message that they are not as important as others and are likely to hear the raising of the question as a suggestion that this might be the right thing to do. It becomes normalised and it becomes “when”, not “if”. If someone living with others who have similar issues has it offered and accepts it, then those others might say, “Well, what about the rest of us?” Those with severe learning disabilities cannot consider and weigh up the alternative.
We know that health is not a level playing field for people with learning disabilities. Disabled people frequently have to fight to get the same treatment for health issues as non-disabled people, so there are real worries in this. Mencap is concerned that the suggestion to someone of assisted dying might be construed by them as the right course, which would constitute “undue influence”.
Then, of course, there is the issue of medical arrogance. Some doctors think they know best and could easily talk a person with a learning disability into doing what they wanted. I accept that many doctors want to get it right—they are well-meaning—but they can be wrong. They choose what they tell someone, and it is always difficult to convey bad news about a condition. The capacity to assess that is really important. Autism and learning disability are very common, so this poses a significant risk to this population. The elderly are also suggestible and might be similarly disadvantaged.
I leave the last words in my contribution this afternoon to Tommy Jessop. Tommy will be well-known to many of us and has visited Parliament many times. Tommy has Down syndrome. He said there need to be
“rules to keep us safe, but that has not happened … our lives are worth living … Please protect us”,
and,
“we are not collateral damage”.
This is now an opportunity for the noble and learned Lord to actually say that people with learning disabilities are not collateral damage.
Lord Markham (Con)
If I may say—I hope, like my noble friend, in the spirit of helpfulness—this has been a thoughtful debate, and we all want the best decision-making framework for these decisions. I am definitely not going to pretend that I have personal expertise as to what the best decision-making framework is. However, on some of the earlier comments, Professor Chris Whitty is our Chief Medical Officer and, although he might not be an expert in psychiatry, he draws on the expertise of the many experts in that field. A number of psychiatrists wrote in to MPs and Lords as part of this process, saying that they felt the Mental Capacity Act was a good, tried and tested framework to be used on this basis, and that there are certain dangers in trying to introduce an as yet new and unknown framework.
There is also the possibility of confusing situations. There could be three patients: one with a do not resuscitate order, another with motor neurone disease and the question of whether their ventilator should be switched off, and a third being assessed under assisted dying. These are quite similar circumstances. If you were to have two different frameworks for assessing them then there is the possibility of quite a lot of confusion as to the best way to do that. I say this to ensure we are looking at all the pros and cons. I am not going to pretend at all to be an expert on this, but the Mental Capacity Act has been tried and tested for a number of years, and there are a number of expert psychiatrists who think it is absolutely the right framework in which to do this.
Baroness Finlay of Llandaff (CB)
I wonder whether the noble Lord, in reading the Mental Capacity Act and Amendment 115, has recognised that the wording in Amendment 115 is deliberately taken from the Mental Capacity Act in order not to create confusion and the difficult situation he is alluding to, which could have happened if somebody was trying to construct an assessment framework out of the blue.
Lord Markham (Con)
Where that clarity can exist then that clearly must be the right thing, but my understanding of the many amendments that have been tabled is that a lot of them seek to replace the Mental Capacity Act with a new decision-making process, which, inevitably, is not tried and tested and so could be confusing. I reiterate that I am not an expert in this—
Baroness Berridge (Con)
I would be grateful to hear from my noble friend further evidence that Professor Sir Chris Whitty has drawn on expertise from other specialties in addition to epidemiology. Could he perhaps contact him and ask who he drew on before he gave his evidence in the other place, as he then had to write a letter, I think after one of the key votes had taken place in the other place, correcting his view?
In addition, the noble Lord mentions individual psychiatrists. One can often find individuals who will say their views, but is he not also concerned, and should we not give greater weight to the fact, that the royal college has been worried about this since Second Reading in the other place?
Lord Markham (Con)
A large number of psychiatrists are absolutely of the view that they do not want a new framework. They wrote to MPs saying that the Mental Capacity Act was totally relevant in all this. I am not saying that I personally know what is best. I am just trying to provide balance, because a number of noble Lords have said that we should be introducing a new framework. There are some serious arguments, including that of the Chief Medical Officer, for why that should not be the case. I cannot speak to the evidence that he has taken, but I know from working very closely with Professor Sir Chris Whitty that he is very evidence-based. I would be very confident that he has taken a lot of expert advice on this.
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.
Baroness Berridge (Con)
My Lords, I support Amendment 107 and just wish to ask a few questions regarding the amendment. Along with my noble friend Lady Coffey, I note that when the noble Lord, Lord Carlile, brought forth his “bring back the judge” amendments, the MCA exited the Bill under that requirement. In relation to the MCA, it was useful to hear the eloquent speech of the noble Baroness, Lady Cass, on the evidence of the Chief Medical Officer because, when you have someone so familiar like that, it would be useful for us to know when they last did an MCA assessment. She put that very eloquently.
In relation to the comments made by the noble and learned Baroness, Lady Butler-Sloss—this is something that again arose in a previous group—on the different statutory regimes of the Mental Health Act and the Mental Capacity Act, these are not, even now, separate. I served on your Lordships’ House’s Select Committee on the Mental Health Bill, and one of the first things that we had to look at was the situation in Northern Ireland, where the choice was made to fuse these parts of the law. That was not part of the independent review by Sir Simon Wessely, but it would have been one of the options at that time, because there is an overlap between the jurisdictions.
I know that the Minister said, on the previous group, that if she is silent, that is okay, but I ask the noble and learned Lord to invite the noble and learned Baroness, Lady Butler-Sloss, to the meeting that is planned for next week with Alex Ruck Keene KC, because at the moment it is not clear that we have patients under one regime and patients under another regime. When you are detained under the Mental Health Act, one of the bases of that, when you potentially want to take your own life, is that you are under the prevention of suicide regime, with psychiatrists and clinicians there. But under this Bill, obviously, you are not, so the clinicians are asking for that clarity. I hope that we will be able to come back to your Lordships’ House after the meeting next week with that clarity. I also hope that the sponsor of the Bill could outline this.
I am surprised that we are still talking about this, because the Royal College of Psychiatrists has been raising this issue since November 2024. If we had had the amendments that could deal with its concerns, they could have truncated the debate. We had this discussion in relation to the advertising amendments. With the concerns from professional bodies, why do we not have amendments at this stage of the Bill, even though the noble and learned Lord said that amendments would be forthcoming? A year or more has gone by since these concerns were raised. I hope that he will be able to clarify why that is, at this stage. It is imperative that we see these amendments in Committee.
Earl Howe (Con)
My Lords, before the Minister rises to speak, I have a question for her about workability arising from one of the amendments included in this debate. In his Amendment 581A, my noble friend Lord Sandhurst posed a specific question on capacity at the moment when a person is given the substances with which they will take their own life. He is surely right that at that critical moment appropriate safeguards are needed where, for any reason at all, there is doubt about the person’s capacity—for example, where there is a history of fluctuating capacity. The doctor should clearly know how to respond to that situation. Can the Minister say whether she believes that the situation that my noble friend has described would require specific guidance to be issued by the Government over and above guidance already issued under the Mental Capacity Act?
Baroness Merron (Lab)
My Lords, I thank all noble Lords for their contributions on mental capacity and eligibility. As usual, I will keep my comments limited to those amendments on which the Government have major legal, technical or operational workability concerns. Indeed, if I do not refer to an amendment, clearly that is not the case, as was just suggested.
I wish to make a point to the noble Baroness, Lady O’Loan, who asked about consideration about compliance with ECHR. It is probably helpful for me to re-establish the consideration about that. It is the role of the Government—this is what I am doing—to highlight where there is a risk of issues in respect of the ECHR. However, it is for the House to decide whether policy choices might create a risk and whether that amount of risk is acceptable or not. The other thing, if it is helpful to the noble Baroness, is that, if it is found that primary legislation is incompatible, there could of course be a declaration of that incompatibility. It would not invalidate legislation. That is probably the main point that I want to emphasise, but this is ultimately a matter for decision by the House.
Amendments 117 and 892, in the name of the noble Baroness, Lady Hollins, would remove Clause 3 and insert a new clause requiring the Secretary of State to make regulations that establish an alternative framework for assessing and determining capacity, based on a psychological assessment, rather than reliance on the Mental Capacity Act. How to make that assessment on capacity—noble Lords have referred to this—is a policy choice and is therefore a matter for Parliament. However, as drafted, Amendment 117 uses a number of undefined terms such as “validated, standardised instruments” and “evidence-based methodology”, which, without further clarification or definition, are likely to create workability concerns. Amendment 892 would mean that the majority of provisions under the Bill could not come into force until the regulations under Clause 3 were made. This would make the backstop provision in Clause 58(4) ineffective.
I turn to Amendment 108, tabled by my noble friend Lord Hunt of Kings Heath. It would introduce a departure from the MCA framework by linking a lack of capacity in one area, to consent to care and treatment arrangements that amount to a confinement, to lack of capacity around another decision, the decision to end one’s life. This could create confusion and require additional guidance and training for practitioners.
It appears that Amendment 119 in the name of the noble Baroness, Lady Grey-Thomspon, would introduce a separate specialist capacity assessment process for adults with a learning disability. This departs from the MCA framework, which requires proportionate, decision-specific assessments, rather than separate processes for particular groups. Operationally, this could create significant training and resource demands, as specialist assessors would need to be identified. The Committee may wish to note that the amendment restricts any publicly funded provider from undertaking the mental capacity assessment, which would mean that individuals with learning disabilities would have to self-fund the assessment from a private sector provider. There are also technical drafting issues, including a lack of definition for “learning disability” and other terms such as “relevant professional regulator”, which could lead to uncertainty in how the legislation is applied.
Amendments 117, 892, 108 and 119 would all involve introducing differential treatment, by treating different groups of people differently. As such, they could give rise to legal challenge on the basis of ECHR obligations, specifically Article 14, which prohibits discrimination when read with Article 8. Any differential treatment, as I said more broadly earlier, would need to be objectively and reasonably justified in order to comply with ECHR obligations.
I turn to Amendment 235 in the name of the noble Lord, Lord Moylan. The effect of this amendment is that certain groups of people would not be able to make a valid first declaration, as the noble Lord said. This could exclude people with learning disabilities, mental disorders, as per Section 1 of the Mental Health Act 1983, and autism from accessing assisted dying. An individual who may experience substantial difficulty in understanding processes or communicating their views, wishes or feelings would also be excluded under this amendment from accessing assisted dying. The definition of “mental disorder” in the Mental Health Act is extremely broad and will include those with conditions such as ADHD, dyslexia, anxiety and sleep disorders. The Committee may wish to note that these groups would be excluded, even if their condition had no impact on their ability to fully understand the relevant information.
Baroness Coffey (Con)
In my Amendment 110, I was basically saying that there is a new section in waiting, and what is the Government’s intention regarding it? My amendment would put it in place a capacity measure in this legislation, and I want to try to understand the position. Also, I do not think that the Minister has addressed any of my questions about Clause 22, and I would be grateful if she could give some thought to them and write to me—or perhaps the Justice Minister might be better placed to do so. I raise this because it is a stand part issue, and I want to get a better understanding without having to table lots of amendments to Clause 22 when we get to it.
Baroness Merron (Lab)
I am sure that both I and my noble friend will be very pleased, together or separately, to reply to the noble Baroness.
Lord Falconer of Thoroton (Lab)
I shall deal with the issues raised in this debate under the following heads. First, what is the correct test and legal framework to apply in relation to mental capacity? Secondly, how do we deal with the question of particular conditions that people have? Does it make it inappropriate, or should there be exceptional protection? Thirdly, what about Clause 22, which is the independent advocate provision?
First, on capacity, as noble Lords know, the Bill provides that the tests under the Mental Capacity Act 2005 shall be applied to determine whether or not the person seeking an assisted death has the capacity to make such a request. Remember as well, for what it is worth, that, in addition to having the capacity to make that request, the person, in order to get an assisted death, also has to have a clear, settled and informed wish to end their own life, and has made that decision to end their own life voluntarily and has not been coerced or pressured by any other person into making it. Those last two protections—a clear, settled and informed wish, voluntary and no coercion—are separate from the question of capacity.
The question of capacity is: is that person capable of making the decision? The Mental Capacity Act, which has been in force for approximately 20 years, starts from the assumption that a person does have capacity to make a particular decision, and only if it is shown that the person does not have that ability are they not able to make that decision themselves.
Should we change that assumption? There are two big proposals in front of us. First, there is Amendment 115 in the name of the noble Baroness, Lady Findlay of Llandaff, and supported in particular by the noble Viscount, Lord Colville of Culross, who made a speech in favour of it. Subsection (1) of that proposal says:
“In this Act, a person has capacity to make a decision to end their own life if they do not lack capacity to make that decision, and references to “capacity” are to be read accordingly”.
I shall read that again for those who did not get it first time round. In this Act, the proposal is that
“a person has capacity to make a decision to end their own life if they do not lack capacity to make that decision, and references to “capacity” are to be read accordingly”.
That looks almost identical to the existing provisions, and I am quite unable to see what the difference is that is being proposed.
Lord Falconer of Thoroton (Lab)
May I go on with this amendment? I want to finish before the noble Baroness comes in.
The bulk of the amendment, or at least a lot of it, is similar to what is already in the Act. A number of questions are spelled out in subsection (6) of the draft; for example, there should be discussion of the
“relevant and available care and treatment, including palliative care, hospice or other care”.
What is being said is that in testing capacity there has to be consideration of all the detailed factual material that might be relevant to such a decision. Noble Lords will recall that both the co-ordinating doctor and the independent doctor have to consider and discuss with the patient almost all those issues. For example, they have to
“explain to and discuss with the person being assessed … the person’s diagnosis and prognosis … any treatment available and the likely effect of it … any available palliative, hospice or other care, including symptom management … the nature of the substance that is to be provided”.
The point I am making is that the difference between what the noble Baroness, Lady Finlay, is proposing in her amendment and the existing law on mental capacity looks incredibly thin. The difference is very slight.
Secondly, and separately, any reasonable person going through this would have to discuss what the consequences were of an assisted death, but that is already provided for in the Bill. I ask the question: is it sensible for there to be two similar but different capacity tests operating in the context of both the health service and what the panel has to decide?
Sir Christopher Whitty said that he was concerned about the idea of two different fine legal distinctions applying, particularly, as he emphasised, because the decision on capacity would be a different question—for example, someone in one room deciding, “Should I have an assisted death?” and in the next room, someone making the decision, “Should I have the ventilation removed in the later stages of my motor neurone disease?” The noble Lord, Lord Wolfson, who I am glad to see in his place, has made the distinction between an assisted death on the one hand and the removal of treatment on the other, but, for the patient involved, both involve the certainty of death.
In my view, having listened very carefully, read a lot about this and talked a lot about it, the idea that two separate tests should apply is damaging, confusing and wrong. Although it is helpful because it is detailed and sets out what the noble Baroness has in mind, I am not in favour of that particular change to the Mental Capacity Act. Yes, there are problems around its enforcement, and it is patchy in its enforcement, but we are talking about the legal framework within which the decision has to be made.
The other aspect of this has to be: will it be properly enforced? People are saying, “It won’t be properly enforced—look at the way decisions are made, sometimes badly, now”. The magnitude of the decision that is being made is why we have a co-ordinating doctor, an independent doctor and then the panel making sure at every stage that the position has been dealt with.
Baroness Finlay of Llandaff (CB)
May I finally ask the noble and learned Lord my questions? I waited until he had finished. Does he recognise that the Mental Capacity Act has no test at its start because the starting point of the Act is that there is a presumption of capacity? The danger is in the overpresumption of capacity. That is why the wording in the amendment uses the language of the Mental Capacity Act to close that gap and avoid the chasm of presuming that there is capacity when there is not.
I gave the example of those with frontal lobe disorder, but we also see disordered thinking in people who have severe electrolyte disturbance. That can be corrected, but the problem with frontal lobe disorder is that it is usually irreversible—
Baroness Finlay of Llandaff (CB)
May I finish my list of questions and then the noble and learned Lord can come back? Can he write to us to tell us who Chris Whitty spoke to before giving evidence to the committee that the Mental Capacity Act is adequate? If he spoke to the CLADD group and those involved in the National Mental Capacity Forum, I am surprised that they would have said it was adequate, because they are the people who were particularly concerned about that clause and felt that this should be corrected.
Baroness Finlay of Llandaff (CB)
All right, I will stop there and come back in afterwards.
Lord Falconer of Thoroton (Lab)
First, in relation to the noble Baroness’s analysis of the Mental Capacity Act, Section 1 says that you shall be assumed to have capacity unless you do not have capacity and Section 2 says, broadly, that you do not have capacity if you are not capable of making a particular decision. The law and, I believe, practitioners, have found that a perfectly adequate framework within which to operate.
Secondly, on the example the noble Baroness gives about frontal lobal problems, this is a problem not about presumption but that, in certain cases, capacity is difficult to identify. That has to be addressed under the Bill, because the two doctors and the panel have to be satisfied that there is capacity. As it happens, they also have to be satisfied that it is the firm and settled view of the person that that is what they want.
Baroness Cass (CB)
I would never come at the noble and learned Lord, for whom I have the greatest respect. We de facto have to make changes to the Mental Capacity Act in the application of this, because, where a person does not have capacity, you make a best interests decision, but, clearly, we are not doing that in this case, so we are already deviating from how the Mental Capacity Act would work normally in relation to medical procedures. Where you think the medical procedure is the right thing, either the patient makes that decision or someone else would make it for them in their best interest, so we are already deviating.
Secondly, people will be trained specifically to carry out this work, so we have four years to train people to do this appropriately. I do not think slightly different training in this setting, compared to capacity in other situations, would be too burdensome for practitioners.
Lord Falconer of Thoroton (Lab)
On the Act not applying, the noble Baroness is absolutely right that best interests never come into it, because if the patient does not have capacity, that is the end of the matter and they cannot have an assisted death. It is worth pointing out that the Bill says:
“In this Act, references to a person having capacity are to be read in accordance with the Mental Capacity Act 2005”.
All this Bill is incorporating is the reference to capacity, not the second half of the Mental Capacity Act, which sets out what happens if you do not have capacity.
Baroness Lawlor (Con)
If the noble and learned Lord is not going to write to Sir Chris Whitty to find out further, can he remind us to what evidence he referred when he gave his judgment that the Mental Capacity Act 2005 was suitable for the purposes of this Bill?
Lord Falconer of Thoroton (Lab)
He gave evidence both to the House of Lords Select Committee and the Commons Select Committee, where he gave his opinion that having two different tests for mental capacity was a bad idea. He gave as a particular reason for that the fact that it would be inappropriate and difficult for doctors to apply the capacity test in one room about the withdrawal of treatment and in the other about an assisted death. That was the material he relied on. We are each capable of evaluating that argument for ourselves. If the noble Baronesses, Lady Lawlor or Lady Finlay, would like to interrogate him further on that, be my guest.
Baroness Finlay of Llandaff (CB)
My Lords, I said I would come back. For the information of the Committee, I have had confirmation that Chris Whitty did not speak to the chair of the National Mental Capacity Forum before giving evidence. He may have bypassed her—so be it.
However, there is another aspect. The doctors doing the assessments are going to be trained; it will not be just any doctor, anywhere, doing these assessments without specific training. If they are going to be trained, it is difficult to understand why the noble and learned Lord does not think that we should make sure their training is as watertight as possible and that they are as best equipped as possible to assess capacity, which may be at a higher level than other doctors who are not involved in this process.
Lord Falconer of Thoroton (Lab)
I do think they should be properly trained—I am very strongly in favour of that. But, with the greatest respect to the noble Baroness, Lady Finlay, that appears to be a completely different question from what the right legal framework should be. That is what we are talking about here.
Baroness Finlay of Llandaff (CB)
Could the noble and learned Lord clarify whether or not the legal framework we are talking about in the Bill is to be applied by the assessing doctors?
Lord Falconer of Thoroton (Lab)
The framework that is to be applied by the co-ordinating doctor and the independent doctor is the framework for assessing capacity under the Mental Capacity Act. That is what the Bill says, and I am resisting the changes in Amendment 115, in the name of the noble Baroness, Lady Finlay.
The noble Baroness, Lady Hollins, is proposing something rather different from that which the noble Baroness, Lady Finlay, is proposing. She proposes that the Secretary of State must, by regulations, establish a framework for the assessing and determination of capacity; that having capacity is to be read in accordance with that framework and not the framework under the Mental Capacity Act; that regulations must involve setting out an evidence-based methodology; and that any assessment must be conducted by a practitioner psychologist who holds particular qualifications and requires the use of validated, standardised instruments capable of detecting subtle or partial impairments in cognition, reasoning or decision-making capacity.
I understand from the speech that the noble Baroness made, and from her splendidly detailed amendment, that particular specialists applying a different regime from that which already applies, with specialised tests, should be the only people who can give a capacity assessment here. Again, in my respectful submission, that falls foul of the same arguments that I advanced before. The first of those is that the Mental Capacity Act is tried and tested in dealing with the question of whether someone is able to make the decision. Secondly—and I am glad the noble Baroness, Lady Finlay, gave me the opportunity to answer this—the co-ordinating doctor and the independent doctor will require training, and the panel will have experience in making these decisions. Thirdly, they will be making decisions having received proper advice.
Baroness Hollins (CB)
A bespoke decision-making framework would initially be legally untested, but the same is true of the Mental Capacity Act, which, as my noble friend Lady Cass said, has never been operationalised or judicially tested in the context of assisted dying. The idea that the two doctors involved would be trained ignores my point that this kind of complexity is not something that can be learned simply through an extra little module. It requires years of experience to help people develop the understanding and ability to make these kinds of assessments. Further, the existence of bespoke decision-making frameworks is not novel in UK law. The Mental Health Act already operates in power over the Mental Capacity Act, recognising that certain contexts require a different approach to decision-making.
Lord Falconer of Thoroton (Lab)
I do not want to be disrespectful, but that was just a repeat of the speech that has already been made and it did not contain a question. I completely respect the arguments of the noble Baroness, Lady Hollins, but she should really only ask me questions, rather than make a speech in the middle of my speech. I apologise for having to say that, but she has not asked me a question.
Baroness Hollins (CB)
Let me frame it as a question then. Does the noble and learned Lord agree that there are already bespoke decision-making frameworks and that this is not novel in UK law?
Lord Falconer of Thoroton (Lab)
I agree that there are bespoke decision-making processes in existence. It is not the law; it is how it works in practice. Through codes of practice, it will be possible to develop appropriate methods of dealing with it.
Baroness Lawlor (Con)
I have difficulty with the noble and learned Lord’s answer in respect of the Mental Capacity Act. He is absolutely right to say that, if you do not have capacity, you cannot avail yourself of this, but the Mental Capacity Act also says that you should not be judged not to have capacity if, to paraphrase, you cannot retain relevant information over a period of time, as referred to in Amendment 107, from the noble Lord, Lord Hunt, or, as referred to in my amendment, you can understand relevant matters in simplistic, visual or other ways appropriate to you. To my mind, that suggests that the Mental Capacity Act, in making exceptions about having capacity, is actually unsuitable for this. We hear all the time about the earlier part—and the noble and learned Lord is absolutely right—but it is those exceptions to the judgment on having capacity that worry me. They are not suitable for this. Will the noble and learned Lord explain why that inconsistency in judging capacity is suitable for the measure that he is proposing?
Lord Falconer of Thoroton (Lab)
I am not sure that I followed the subtlety of that question. The Mental Capacity Act 2005 is a tried and tested framework, which seeks to ensure that someone—a doctor, for example—has to make a decision about whether a patient is capable of deciding to withdraw from treatment. The doctors will be experienced in doing that and the legal tests have worked over the years. The noble Baroness, Lady Finlay, is right when she says that they are frequently not applied in the correct manner, but in this Bill the key thing is that there are safeguards so that those particular problems will not apply. That is why I am espousing quite strongly keeping the same test for the assisted dying Bill as in the rest of medicine.
Baroness Butler-Sloss (CB)
I have a practical question. What, then, is the noble and learned Lord going to offer us?
Lord Falconer of Thoroton (Lab)
I am not offering anything in the way of a different framework in relation to this. I am more than happy to discuss with people what sort of code of practice there should be. I say that not because I have not been listening—I have been listening as hard as I possibly can; but listening does, from time to time, involve disagreement as well. I apologise for disagreeing, but I do disagree with the two big schemes that have been put by the noble Baronesses, Lady Finlay and Lady Hollins.
Baroness Grey-Thompson (CB)
May I ask the noble and learned Lord for his help? What should I say to people such as Tommy Bishop, and others, who have asked for extra protections in the Bill? Can I tell them that they will be safe?
Lord Falconer of Thoroton (Lab)
The noble Baroness can tell them that they will be safe. The question that she is raising in relation to such people is whether they will be overpressed to have an assisted death. My answer is that they will not, because they would have to satisfy a co-ordinating doctor, an independent doctor, a panel consisting of an ex-judge or a King’s Counsel, a psychiatrist and a social worker. In my view, this will provide him with protections. If the noble Baroness has the opportunity to speak to him, I very much hope she might tell him that there are those protections.
I am very aware of the fact that in normal day-to-day interchanges with various parts of the systems, both health and legal, there are those who may make disabled people feel that their lives are not sufficiently valued. Of all the interactions with the health service, however, this is the one that will be most protected. And by most protected, I mean giving most safeguards to somebody in Tommy’s position.
I should probably get on if we want to get away. I move to the question of the various conditions: this is the position of the noble Lord, Lord Moylan. He is asking whether we might just exclude certain conditions under the Mental Health Act, such as autism and learning disabilities. Many of these people will not be able to get an assisted death because they will not satisfy the capacity test, or they will not satisfy the requirement for it to be their firm and “settled” view. I do not believe that they should be excluded altogether in relation to that because, as pointed out by the noble Baroness, Lady Coffey, such a wide range of conditions are covered by the Mental Health Act. Autism covers a very wide set of circumstances. Is it right that everybody who is autistic should not have that right? Learning disabilities includes people who are dyslexic, for example. If that right is available to people, should it not be available to people who are dyslexic? I am not in favour of the suggestion made by the noble Lord, Lord Moylan.
I turn to the important point raised by the noble Lord, Lord Sandhurst, who draws our attention to Clause 25. This deals with the position at the moment of providing the assistance—that is, when the drugs are provided. It says:
“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided … has capacity”.
The noble Lord, Lord Sandhurst, raised the question of what happens if he has doubts in relation to it. The answer is that he cannot be satisfied and that is the end of it. He has to be “satisfied”: that is the word used.
I turn to whether Clause 22 should stand part. As noble Lords will know, I have proposed a new Clause 22, and there is considerable detail in relation to it. It would be wasting the Committee’s time for me to talk about the existing Clause 22 when there is already available a detailed Clause 22.
Lord Goodman of Wycombe (Con)
I apologise to the noble and learned Lord if he has already answered the question about my amendment. I would be grateful if he would clarify his view of Amendment 113 in relation to the code.
Lord Falconer of Thoroton (Lab)
If that is a reference to whether there should be the affirmative rather than the negative procedure, may I take it away? That seems a reasonable request. May I get back to the Committee on that?
Baroness Berger (Lab)
My Lords, we have debated for just over two hours and some very significant issues have been raised. It is worth outlining briefly why this group matters, particularly in the context of what is happening beyond this place and considerations and representations being made in the media.
It was last week that Esther Rantzen told us that the Bill
“only applies to terminally ill people like me”.
The campaigners we hear from reassure us that it would obviously be something that they “freely choose and have fought for”. There are noble Lords who said at Second Reading in this place:
“I want that choice for myself”.—[Official Report, 12/9/25; col. 1786.]
It centres those who have no doubts about their capacity to make this decision and no doubt that they would freely choose, but it removes from the room people who are not like us. It is our job to balance the needs of those with true agency, for whom this will be a free choice, with those who may be pressured or led towards this path, in particular because of the inadequacies of the Mental Capacity Act.
It is clear that there remains significant concern about the relationship between the existing test in the Mental Capacity Act, brought forward in 2005, and the decision to have an assisted death under the Bill. At the risk of stating the obvious, a decision to have an assisted death was not in contemplation for the architects of that Act back in 2005, so it is not surprising that we have heard such a range of questions and concerns, both from noble Lords and from experts outside this Committee, including the Royal College of Psychiatrists.
I listened closely to my noble and learned friend’s remarks to the noble Baroness, Lady Finlay. It may be helpful for noble Lords to be aware that, back in the other place, the desire to use the Mental Capacity Act was largely pragmatic as it is what doctors are used to, not because it is the best framework for this decision. I reflect on the comments from the Health Minister, Stephen Kinnock, who said in the Commons that it is “a known quantity” and a well-established piece of legislation. He went on to say that doing things differently would cause “operational challenges and confusion”, and that a different approach would add complexity. This bunch of amendments has pragmatic, specific proposals for adjustments to address what we are trying to do within the constraints of the legislation. Perhaps this would have all been ironed out if we had gone through some proper pre-legislative scrutiny, as we would have done had this been a government Bill.
In particular, I acknowledge the expertise of the noble Baronesses, Lady Hollins, Lady Cass and Lady Finlay, in this debate. The debate has raised some serious questions about what these specific provisions of the Mental Capacity Act mean for the weakest and most vulnerable: the endorsement of unwise decisions; presumption of capacity; brief retention of information, and whether that is sufficient; a duty to support decision-making, which risks becoming a duty to facilitate a decision to die; and relying on time-specific capacity.
I have in front of me so many different important points raised by noble Lords from across the Committee. In the time we have available, I am not going to mention all of them, so I hope noble Lords will forgive me for that, but it is worth reflecting on just a handful. The noble and learned Baroness, Lady Butler-Sloss, raised the very important concerns about people with variable dementia and people who are sectioned. The right reverend Prelate highlighted the biases experienced by people with learning disabilities and the discrimination they face. The noble Baroness, Lady Finlay, talked about the need for clarity for doctors and how we can at least endeavour to make the Mental Capacity Act fit for purpose in the Bill. The noble Baroness, Lady Cass, reminded us all that assisted death is not a medical treatment. I again reflect on the important representations from the noble Baroness, Lady Grey-Thompson, on the concerns raised by the disabled community and the particular challenges not addressed in the Bill.
Given that my noble and learned friend Lord Falconer indicated in his response that he will defend the Mental Capacity Act as the foundation for the Bill, it is disappointing that he has dismissed the specific provisions that could be set aside and could make a difference. I welcome his earlier intervention, when he said that he would bring forward amendments that would introduce additional assessment in particular cases, but that question is different from the one being asked today, about how we can be confident that the test itself is the right one.
I was particularly concerned by my noble and learned friend’s response to the question from the noble Baroness, Lady Grey-Thompson, about whether a disabled person would be safe. He said that no one would be overpressed into making a decision to end their life. I think that, for many of us here, it is not about being overpressed: we do not want anyone to feel pressed at all. I hope that he will further consider that question, including how experts, who still have so many doubts, can be consulted in more detail.
Given that we first started talking about these issues in this place before Christmas, and in order to expedite our deliberations, I hope that we will not have to wait until Report and that the amendments he mentioned will be brought forward as soon as possible. We understand that he has a wealth of civil servants and legal experts at his disposal; perhaps they can help him to act even quicker. My noble and learned friend has outlined that he is not prepared to accept any of the amendments proposed in this group, but we would like to see what he intends to propose as an alternative. I know that everyone is concerned that we should expedite our deliberations, in the light of the later groups, and that would help us all enormously.
Lord Falconer of Thoroton (Lab)
I said “overpressed”, but I did not mean that; I meant to say pressed. I apologise for saying “overpressed”.
Lord Blencathra
(2) Where the person is ordinarily resident in a registered care home or nursing home, a registered medical practitioner must not certify capacity for the purposes of this Act unless—(a) a specialist clinical review has been completed by a physician with expertise in geriatric medicine or complex care,(b) an independent psychiatric capacity assessment has been carried out by a consultant psychiatrist with expertise in fluctuating or complex capacity within five working days of the specialist clinical review (subject to subsection (4)), and(c) the findings of the review and assessment have been considered by the registered medical practitioner.(3) The specialist clinical review must explicitly record whether any reversible causes of impaired or fluctuating capacity have been identified and treated, including but not limited to delirium, infection, dehydration or medication effects.(4) Where the independent psychiatric capacity assessment is not completed within the period in subsection (2)(b), the registered medical practitioner must record the reasons for the delay.”Member’s explanatory statement
This amendment requires multidisciplinary specialist review before capacity is certified for care home residents, mandates explicit consideration and treatment of reversible causes of impaired capacity, and creates a short statutory timeframe and audit trail for those reviews.
Lord Blencathra (Con)
My Lords, I will speak to my Amendment 110A, which seeks to insert into Clause 3 a requirement that, where a person is ordinarily resident in a registered care home or nursing home, a registered medical practitioner must not certify capacity for the purposes of the future Act unless a specialist clinical review and an independent psychiatric capacity assessment have been completed, with their findings considered and any delay recorded.
I will begin with what I hope is a simple, uncontroversial proposition: care home residents are a medically vulnerable group and deserve the highest standards of protection when the law contemplates irreversible outcomes. Many residents experience delirium, acute infection, dehydration, polypharmacy and other reversible conditions that cause fluctuating capacity. An assessment at a single point in time, however carefully performed, can miss those transient but decisive impairments. My amendment recognises that clinical reality and responds with proportionate, targeted safeguards.
My amendment is narrowly drafted and practical. It requires three things before capacity can be certified for a care home resident under the Bill. First, there must be a specialist clinical review by a physician with expertise in geriatric medicine or complex care. Secondly, there must be an independent psychiatric capacity assessment by a consultant psychiatrist with expertise in fluctuating or complex capacity, to be completed within five working days of the specialist review, subject to the limited recording provision where delay occurs. Thirdly, the registered medical practitioner must consider the findings of both reviews before certifying capacity. The specialist review must explicitly record whether any reversible causes of impaired or fluctuating capacity have been identified and treated, including delirium, infection, dehydration or medication effects. If the psychiatric assessment cannot be completed within the five-day window, the practitioner must record the reasons for the delay.
Those are modest, sensible requirements. They would not prevent assessments; they would ensure that they are done properly. They would create a short statutory timeframe, so that the process is not indefinitely protracted, and an audit trail where delays occur. They would also require explicit documentation that reversible causes have been sought and treated. That is clinical best practice, and it should be statutory practice where life-ending decisions are at stake.
We must also place this amendment in the practical context in which the Bill would operate. We all know that care homes are already operating under chronic strain—falling bed capacity, severe workforce shortages and the legacy of Covid pressures—and those realities must shape our debate about assisted dying. Care home capacity in England has fallen relative to the ageing population: places per 100 people aged 75 and over have declined over the past decade and the sector has not kept pace with demographic demand. At the same time, the social care workforce is under sustained pressure: vacancy and turnover rates remain high; recruitment and retention are major challenges; and many areas rely heavily on international recruitment. These shortages reduce clinical time, limit specialist input and make consistent, high-quality capacity assessments harder to deliver at scale.
We all remember Covid-19, which exposed and amplified these pressures. The discharge to assess policy and rapid hospital discharges into care homes in 2020 were possibly a necessary emergency response, but reviews have concluded that some discharges contributed to outbreaks and that operational and clinical oversight was variable. That episode shows how system pressure can degrade safeguards and lead to mistakes, not because clinicians lacked compassion or were uncaring but because the system was overwhelmed. If we accept that as a reality—it was—we must ask whether a new assisted dying pathway could create similar perverse pressures.
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”.
Lord Carlile of Berriew (CB)
My Lords, I will raise a practical problem, which I urge the noble and learned Lord to address, in connection with care homes and nursing homes. The problem has been drawn to my attention—and, I think, that of other noble Lords—by a letter received today from the charity Mission Care, which has 300 staff in and around London and looks after 230 residents, some of whom might wish to apply for assisted death. The point that Mission Care makes is that its staff, by reason of the fact that Mission Care is a committed Christian organisation, en bloc would not be willing to take part in assisted death under the Bill. The effect of that, says Mission Care, is that it would have to close, thereby depriving people of the quality care that they have in those institutions.
I know that the noble Lord, Lord Blencathra, has a visceral opposition to anything arising from the European Convention on Human Rights. However, I have known the noble Lord long enough, and have enough affection for him, to know that he is very practical and that if the European Convention on Human Rights will assist his argument, he will be very ready to adopt it—so I ask him to be patient with me. These amendments, particularly Amendments 110 and 112, which I support, would take the process out of nursing homes and residential homes and into the hands of outsiders.
It is not just a question of Mission Care. Among all the many residential and nursing homes up and down the country, there will be very large numbers of staff who would wish to take advantage of Clause 31(1), which says:
“No person is under any duty to participate in the provision of assistance in accordance with this Act”.
It is the opt-out, and a very important opt-out that I know the noble and learned Lord is committed to as part of his Bill.
If we find that, in nursing homes and residential homes around the country, a significant proportion of staff wish to take advantage of Clause 31(1)—or Section 31(1) if the Bill becomes an Act—it will cause real difficulties for residential and nursing homes. There will be division among their staff, and it may be that those divisions make it very difficult for them to play any part whatever in this scheme if it is made law. I invite the noble and learned Lord to consider this issue further to ensure that those staff are not put in a very difficult position in the exercise of their consciences.
Baroness Watkins of Tavistock (CB)
I want to draw attention to the fact that I raised this issue two days previously in Committee. It is essential that we retain staff, particularly nursing staff, who would object to anything to do with assisted dying. That can be achieved, as I said earlier, by enabling people, when they do their advance directives, to be very clear if they never want to have this discussed with them, which I think is completely fair. Nursing homes must also be able to be very clear that they want nothing to do with this in their marketing materials. That is a bit of a tough word, but I think it is real. We must respect the faith and choice of healthcare staff as well as patients or, in this case, residents and their relatives.
However, the vast majority of people who are in long-term care homes rather than nursing homes have cognitive disability, which means that they will not be eligible in this event. It is in the very high-tech nursing homes where people who have very complicated issues might want to choose assisted dying—it might be a 52 year-old with complex disease. I can see that noble Lords want me to hurry up, but I just want to be absolutely clear that we need to get this in context.
Lord Carlile of Berriew (CB)
I am grateful to my noble friend for that intervention. She has raised three points, and I want to answer all three quickly. On point one, I absolutely agree with her: we have to respect the views of staff, particularly views that are a combination of professional and philosophical principles. Taking this process out of the nursing home, in accordance with Amendments 110 and 112, does exactly that.
Secondly, advance directives are quite an esoteric issue. I echo what the noble Lord, Lord Deben, said, based on his experience as a Member of another place. There are a number of us here who used to go to nursing homes and residential homes at least twice a year, sometimes taking our children with us to add good cheer. We came out with very different impressions of those homes: the good, the indifferent and, in one or two cases, the really bad. We have to take that into account. In some of those homes, there is practically nobody with an advance directive. Advance directives on the whole are a middle-class thing. Probably most of us here have advance directives of some kind or another, which one has to pay one’s solicitor to produce; one has to pay a lot of money in London, happily rather less out in the provinces. Where there are advance directives, that is fine, but not everybody has them.
I have spoken to the third point, which related to the remarks of the noble Lord, Lord Deben. I repeat that I am making an extremely practical point that ought to be addressed. If this responsibility lies with nursing homes, then it will cause immense difficulty. Also, there is always the risk in the really bad residential and nursing homes that people will be subject to undue influence in the unusual atmospheres of such institutions.
Baroness Finlay of Llandaff (CB)
My Lords, I would like to provide some information to the Committee which I think supports these amendments quite well. Care England, which has 122 care providers, consulted its care providers some weeks ago. It found that:
“84% have not been consulted on the Bill or its implications. 24% said staffing would become very difficult due to conscientious objections, with a further 16% expressing similar concerns. Only 14% reported staff being willing to participate in the whole procedure … Only 13% said they could manage assisted dying in their Homes. Only 27% reported 24/7 access to specialist palliative care support on site”.
This demonstrates that the care home sector itself has been very worried about how it would cope with this. Sadly, it also demonstrates just why not having specialist palliative care in scope on this Bill has created quite so many problems.
Baroness Lawlor (Con)
My Lords, I will speak in support of Amendment 111 in the name of my noble friend Lady Eaton. This would require a higher bar for proving capacity in care homes and nursing homes. The noble Baroness, Lady O’Loan, has already referred to the data: the evidence of higher cognitive impairment in 70% of care homes, the failure of MCA assessments in 15% to 25% of them, and the incidence of dementia. I will not recount the other data; I have cut it out of my speech.
There is also the very mixed picture we get of care homes and nursing homes. One example was a recent—well, not that recent—undercover BBC programme about Whorlton Hall in County Durham, a hospital for patients with learning disabilities and autism. The evidence was shocking. It was described by specialists in the subject as amounting to psychological torture.
Apart from the problems that we have in care homes with giving patients the ability to use capacity because of all the counterfactuals that exist and the impossibility of accurately establishing capacity, I reflect on the potential harm resulting from another factor, a danger we should bear in mind—that from the state. Officials bureaucratise a system in a way that endangers the frail and the elderly and, under this Bill, particularly endangers care home residents, some of whom have been misdiagnosed as having capacity when they do not, and go on a path to suicide. We have already heard mention of the Liverpool care pathway in that connection.
Baroness Smith of Newnham (LD)
My Lords, like the noble Baroness, Lady Hayter, I have recent experience of visiting care homes. My late father was in a care home from November 2024 until December 2025. Unlike in the noble Baroness’s case, although he was well cared for, there were a range of issues that I was aware of while he was in the nursing home, and in the period before he entered the nursing home, that might be relevant for noble Lords to reflect upon, not least because they also provide a lesson for those the noble Baroness has talked about who are in nursing homes but still have capacity, are able to form a view and would be able to say, “I still want an assisted death”.
The reason why I say that is precisely because of issues of fluctuating capacity, infection, delirium and medication. Before my father went into a nursing home, there was a period when I assumed he had dementia. He was becoming more and more vague. He was on a new medication, and over time the doctors had said, “Double the medication”, then, “Quadruple the medication”, and he became more and more vague and did not seem to know who I was.
Then, for whatever reason, the medication was changed. This was nothing to do with dementia or mental capacity; it was to do with blood pressure. The medicine was taken away and something else was put in its place, and my father returned. It happened to be around Easter, and it was like some Easter resurrection. He was able to function normally, as he had before.
Then my father got pneumonia, went into hospital and was let out into a care home. In the home, they said, “We’re slightly worried about cognitive decline and impairment”. At a review meeting they went through his medications, and I said, “Can you tell me everything he’s on?” They listed the medicines again, including doxazosin. I said, “Why’s he on that? That caused problems before”, and they said, “We don’t know, really. The hospital put him on it”. There had been nothing in his medical notes to say, “Don’t use this medication”.
The new GP, to whom my father had been referred, spoke to me on the phone and was entirely happy to accept my wholly non-medical suggestion that this medication was not appropriate. He was taken off it again, and a mental health practitioner was asked to call me. The suggestion had been that my father should have a capacity test while in the nursing home, but this practitioner said, “To be honest, there is not much point, because if somebody’s been in a care home for more than a few weeks they’re not even going to know what day of the week it is”. So the view was they would not bother testing my father for capacity. He subsequently had on his death certificate that he had vascular dementia. If a full capacity test had been done, maybe that would have been diagnosed at a point before he died rather than after. It was never fully diagnosed while he was alive: there was merely a suggestion that there might be an issue.
The point is that if medication can affect somebody who would otherwise have capacity, it might affect the resident that the noble Baroness, Lady Hayter, referred to. In a nursing home, that person could equally get an infection or be prescribed something for which there were contraindications, but would there be sufficient recognition of that? Although some nursing homes will have brilliant care, not all of them will, and my father was—
Baroness Hayter of Kentish Town (Lab)
Would the noble Baroness accept that could have been even more so than if her father, or my husband, were at home all day without any medical or nursing staff around them? These people are more likely to pick up those infections than equivalent people who are living at home.
Baroness Smith of Newnham (LD)
I can see a point to that, but the message I was given by the mental health practitioner who rang me from the mental health team—I think he was a psychiatrist—was basically that once somebody is in a home, these tests become much more difficult because of the nature of the environment. That may differ from home to home—and yes, when my father had pneumonia and was clearly delirious, he was at home. If there are concerns, we should surely make sure, if people have a cognitive impairment, that we know that is the case, but if somebody does not—if there are the short-term issues that are being discussed in the amendments, in particular Amendments 111 and 112—then surely those people who want an assisted death would want it ruled out that they had some sort of cognitive impairment if it were temporary and reversible. That is the sort of thing we really need to get right, not only for those people who have an impairment but for those who actually do not have one but would not then be able to have the assisted death that the noble Baroness, Lady Hayter, and others might wish them to be able to avail themselves of.
Baroness Fox of Buckley (Non-Afl)
My Lords, this small group, which I did not expect there to be so much rich conversation about, indicates why care homes really are an important focus for the Bill. I absolutely want to echo the points made by the noble Baroness, Lady Finlay, about care home workers: they have not been consulted. Might the noble and learned Lord make a commitment to meet up with representatives of the care sector to discuss the very real issues that the Bill will create for them if it passes? We can recognise that many of the people in society who will, at some point, be eligible for assisted death if the Bill passes will probably be in care homes, because that is where elderly people are, who might well get terminal diagnoses—rather than 14 year-olds. We are talking about a different cohort; that has at least to be considered. Some of the previous contributions have therefore been very helpful. I really thank the noble Lord, Lord Blencathra, for laying out so clearly why this should matter to us all.
I am somewhere between the noble Lord, Lord Deben, and the noble Baroness, Lady Hayter, on care homes because, for the purposes of this discussion, I would rather not go down the care home horror story route. However, even if you accept care homes as positive places in general, there are still huge challenges in the Bill in relation to them. I will lay out some of these challenges.
Despite the horror stories, in most instances, care homes are incredibly important to society’s care of the elderly and frail. Although they are too often neglected—understatement of the year—by state support, they are fulfilling an incredibly important public service. By and large, the care workers I know and have encountered—far too many of them, for a variety of reasons—are heroic. They are poorly paid, underappreciated and overworked, and we know there is a massive turnover of staff. These things have been well covered in different discussion. I also find that many care workers are amazingly generous and creative in their care of our older citizens who are in need of residential care.
Despite all that, we must be realistic. There are difficult, challenging circumstances in care homes, and we have a social care crisis, which we talk about all the time. This is the living example of that crisis. There is not enough space in care homes, and they can be chaotic—not because of the staff. In a day-to-day sense in care homes, standard mental capacity assessments are done by overworked care workers who are not clinical professionals. I worry that these assessments used for treatments might bleed, in some way, into the future as a way of signing off a new medical treatment on the block: assisted dying. We must recognise that as a possible concern.
I am slightly contradicting myself now, but we must recognise the kind of pressure that people are under. Many elderly people in care homes have had things like do not resuscitate orders or inappropriate diagnoses. I think it was the noble Baroness, Lady O’Loan, who made a point that I too can relate to, where an elderly person was given their meal and drink, and it was ticked off by care staff as having been eaten and drunk but it was not; the elderly person did not even know what it was, but it was ticked off anyway. That was not cruelty, on behalf of the staff; it was rushing around. They did not feed that elderly person, but they were not starving them; they simply did not have time to sit down and do anything about it.
This matters because a large number of people who may fall into eligibility because they are terminally ill will be people whose capacity needs to be assessed, and they will live in care homes. The problem is that care homes are a gathering of people who have fluctuating cognition. The main thing that goes on in care homes, beyond care, is that cognition changes all the time. The idea that a firm, autonomous decision will be made in those circumstances needs to be, at the very least, queried slightly.
We are talking about UTIs, dehydration, infection or the effects of medication, but the big one, of course, is undiagnosed dementia or early dementia that no one has yet noticed. Alzheimer’s Society data shows that only two-thirds of those with dementia have received a formal diagnosis. Sadly, there are massive waiting lists, so the diagnosis rate is low—and in Wales, inevitably, it is sadly even lower. There is also hidden dementia, where no one is trying to get the people assessed but it is there none the less. Due to the heightened risks of cognitive impairment issues and the instability of cognition, we definitely need to take these amendments seriously. We need to have specialist clinical assessments to ensure that capacity means capacity and is not part of a “good days, bad days” scenario.
Anyone who has had relatives in care homes, or spent any time in one, will know all about the “good days, bad days” situation. You can go in one day and chat away to a coherent and articulate older person, but the next time you see them they are completely incoherent and confused. You then go back and they are chatting away again.
Lord Wolfson of Tredegar (Con)
My Lords, I am grateful to my noble friend Lord Blencathra for opening the debate on this group. He is right that we should consider carefully how the most vulnerable will be protected under this legislation. Having a multidisciplinary specialist review before a person in a care home is certified to have capacity seems an interesting and a sensible safeguard. It was not clear to me whether the five working days is from the date of the review or from the date of the findings of the review, but no doubt that could be looked at and clarified.
Of course, generally, social care is a policy area that needs attention. We know that too many older people receive inadequate care in old age, and I must say that it seemed to me that the personal experience of the noble Baroness, Lady Hayter, and that of my noble friend Lord Deben can both be right. It is likely that there are excellent care homes and care homes that need improvement. I am afraid that that is probably the society we live in.
Effective communication is a challenge that older people face. This is an obstacle for the process under the Bill for assessing capacity. It therefore seems sensible for specialists to be involved when the person requesting assistance is in a care home. We also have to consider the risks of institutionalisation, which I know from experience can certainly be a factor for people in care homes. I would be grateful if the Minister could confirm what the Government’s conclusions are on this proposal and its workability. Would it be prohibitively costly or could it be delivered?
On the amendment from my noble friend Lady Eaton, this additional process and heightened evidential standard for persons in care homes is a constructive and interesting suggestion. I invite the Minister to update the Committee on whether the Government have considered the two separate proposals in this group and come to a view on which would be the more workable and effective if implemented. That assessment would not only be helpful to the Committee but might enable the House in due course to make a more informed decision on the best way to improve this part of the Bill on Report. If that assessment has not yet been made, perhaps the most appropriate way forward would be for Ministers to write to the Committee to update it, at some point between now and Report.
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.
Lord Carlile of Berriew (CB)
I am afraid that the Minister is between a rock and a hard place here. If these amendments are not passed, she might find that the Government are in breach of Articles 9, 10 and 11. I would be grateful if she could consult her lawyers in relation to that matter.
Baroness Merron (Lab)
I will consult my lawyers with pleasure.
Lastly, all the amendments in this group address complex issues and, if they were passed, considerable further policy and drafting work would likely be required.
Lord Falconer of Thoroton (Lab)
I thank the noble Baronesses, Lady Smith of Newnham and Lady Hayter of Kentish Town, for sharing their significant and painful experiences. I thank the noble Baroness, Lady Fox, for doing the same in relation to the last months of her mother’s life.
This group deals with the question of whether there should be special provision for people in care homes. Two routes are suggested: first, in the amendment from the noble Baroness, Lady Eaton, which was spoken to by the noble Baroness, Lady O’Loan, that there be a higher evidential standard; and, secondly, that a series of additional tests should be raised.
I think that everybody in the Chamber is agreed that care homes vary across the country; there are those of the highest possible standards and those that do not have the same high standards. It is also the case—a point made forcibly and effectively by the noble Baroness, Lady Watkins—that one should not confuse the fact that there are people in long-term care and people in high-tech nursing homes who are being rather elided here. People become institutionalised and may suffer long-term cognitive problems from being in care homes for a long time. The question raised is whether additional steps beyond those provided for in the Bill should be put in place to check that such people, particularly those who have been in care homes for the long term, have capacity.
The current arrangements require that the co-ordinating doctor is satisfied, after discussion with the patient and anybody else, that they have capacity, and similarly in relation to the independent doctor. Then, the panel has to be satisfied, and then the co-ordinating doctor has to witness the second declaration of the patient. The co-ordinating doctor can witness that second declaration only if he or she is satisfied that, among other things, the patient has capacity. Fifthly, the doctor providing the assistance also has to be satisfied that the patient has capacity. The question posed is whether, despite the fact that there are five separate occasions on which a doctor or a panel have to be satisfied of capacity, for somebody in a long-term care home, one should make additional provision for separate assessments or have a higher evidential standard.
Lord Hamilton of Epsom (Con)
This is the second Friday we have had where the target has been 10 groups of amendments and we have come well below half on both those days. If we go on scrutinising the Bill in the way we have been doing, it is inconceivable that it will ever reach the statute book, so is it not time that the noble and learned Lord really considered what he can salvage from the Bill, where there is agreement on both sides of the Committee, so at least something will get through that improves the lots of people in this country?
Lord Blencathra (Con)
My Lords, once again, this has been a good little debate, with more noble Lords participating than I expected. The whole Committee admires the noble Baroness, Lady Hayter, for the way she described her husband’s condition and the extreme care, and possibly good luck, she has had in finding an excellent home for her husband. When we were in the House of Commons, we could never tell these personal stories about our disabilities, because we would be regarded as showing a weakness and therefore not suitable to fight for our constituents. The wonderful thing about these debates over the past few weeks is that noble Lords from all sides have been able to relate stories about their own disabilities, afflictions and illnesses and those of their close relatives, which has added a tremendous amount of wisdom and compassion to our debates.
I say to the noble Baroness that my amendment does not seek to throw anyone out; it does not excuse anyone in a care home from getting treatment. We just want extra care for them. As my noble friend Lord Deben and the noble Lord, Lord Carlile, said, there are good care homes, bad care homes and downright ugly care homes. Our amendments are designed to deal with those that are not quite up to scratch.
The noble Baroness, Lady O’Loan, made the point that dementia sufferers are even more vulnerable. The amendments from me and from my noble friends Lady Eaton and Lady Lawlor are different, but the thrust is still the same: we are suggesting that a bit more care is necessary to determine capacity in care homes.
I must come to the important point made by the noble Lord, Lord Carlile, backed up by my noble friend Lord Deben, about the ECHR. I am a member of the Council of Europe. I have been elected to a specialist committee on observing elections in former Soviet Union countries. I was on the committee that elected judges. I am pleased to say that we elected—I was one of those who voted—a superb English KC, who is just retiring this year, to be a judge. I am also a substitute on the election committee. I totally support the ECHR. What I am critical of are some of the judgments we have had in the United Kingdom from some of our immigration judges, who I do not think have properly read the ECHR. I have no problems with the ECHR itself. I am totally in support of it and the principle—I am just worried about some of the judgments.
The other point that the noble and learned Lord made—he ended with this—is that responsibility for this must not rest with care homes alone, and I agree entirely. The noble Baroness, Lady Finlay, made the point that some care home staff are very worried about operating this. The noble Lord, Lord Carlile, made a point about Mission Care and Christians in care homes feeling that they could not work it either. My noble friend Lady Lawlor made the simple point that a higher bar is necessary for care homes. The noble Baroness, Lady Smith of Newnham—to whom we are grateful for revealing her father’s story—stressed that the vagaries of cognitive decline vary depending on the medication that one is on, and I have experience of that.
The noble Baroness, Lady Fox of Buckley, said that she did not want to talk about some of the horror stories in care homes. None of us wants to do that, although every other month we read about some of the appalling treatment that happens, particularly to those suffering from severe dementia. She said that there is a social care home crisis, and that is right. She was spot on about ticking the food boxes.
A few years ago I was in St Thomas’—early on in my MS days, when I had a relapse—and there was an old boy in a bed in the corner, aged 82. At that time we would tick the boxes for what we wanted the next day. Do Members recall that the Government appointed Mr Loyd Grossman to review menus at NHS hospitals? He did review them, but he just wrote them in fancy language. The choice for one morning was ground beef, suffused with basil and scented with carrot juice—or something—and chopped potatoes. This old boy did not have a clue what it meant. I managed to get to him and say, “It’s mince and tatties”, and he was able to understand it. The nurse said, “Oh, you don’t want anything to eat, Mr Smith”. He just said, “Porridge, porridge”. She said, “Oh, we can’t give you porridge. There is only the choice of mueslis”. I will not labour the point any further, but the same thing can happen in care homes, as the noble Baroness, Lady Fox of Buckley, said. She asked, in conclusion, how can one decide capacity between a patient who is on a good day and a patient who is on a bad day? People in care homes need extra special measures to determine capacity.
My noble friend Lord Wolfson of Tredegar made an excellent point about care homes: there are good ones and bad ones. He asked the Government to spell out what the consequences would be of my noble friend’s amendment and my amendment, and what the Government think about it.
I say to the Minister that I am tempted to put down an amendment to the Animal Welfare Act to protect the poor rabbit that has been pulled out of the Government’s hat to say that all our amendments are contrary to the ECHR.
Finally, I say to the noble and learned Lord, Lord Falconer, that our amendments may not be perfect, but the consensus from all noble Lords who have spoken, apart from the noble Baroness, Lady Hayter, was that something more needs to be done for care homes—a little bit of extra protection is necessary. When we were dealing 18, 21 and 25 year-olds, the noble and learned Lord said that we need to think about a bit of extra protection for them. He was right, and I look forward to seeing his amendment on Report on that matter. But the same goes here. We need a bit of extra protection for people in care homes, for the various reasons advanced by noble Lords. Having said that, I look forward to seeing his amendments on Report—and if not, we will table some ourselves. In the meantime, I beg leave to withdraw my amendment.
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.