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Friday 6th February 2026
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10:15
Baroness O'Loan (Crossbench)
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Baroness O'Loan (Crossbench)
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 which can be stabilised, halted or effectively managed by treatment must be excluded, ensuring that only genuinely terminal illnesses are included in the definition. And the second part of the test relates to the six month prognosis. We have heard at length about the difficulties of prognosis. Noble Lord Lord Stevens referred last week to the study of over 998,000 prognoses, which found that the accuracy of prognosis in the weeks months range dropped to 32%.
My Lords, that means that 68% of patients receive an incorrect prognosis in that range, and they may find themselves qualifying and choosing to die thinking that this is what's going to happen to them anyway, when they could have lived so much longer and their families and friends could have benefited from them continuing to live. Murray and Atkin, writing in the BMJ, said there are no valid tools, tests or clinical clinical examinations that can reliably and safely identify that a person is expected to die within six months.
And Paddy Stone, who's a former head of the Marie Curie Palliative Care Research Department at UCL, agreed. My research demonstrates there's no reliable way to identify patients with 6 to 12 months to live, at least no method that would be reliable enough to act as a safeguard for the proposed assisted dying legislation. And Professor Martin Vernon, of the British Geriatrics Society told the committee doctors and health professionals are very good at predicting when someone is going to die within 1 to 3 days.
They are also very good at predicting when someone's likely to survive beyond a year. In between those days, those times, it's almost impossible for a doctor to predict genuinely accurately. We have heard so often in the course of these proceedings that those who have disabilities are terrified that their lives will be seen as lesser value, and that they'll be identified as suitable for assisted death at some stage when they're suffering from pneumonia or unhealed pressure sore, for example, we know that there is a significant risk of unconscious bias against such patients.
Doctor Alex Hughes of King's College Hospital, noted in written evidence that doctors who choose to participate in assisted dying may be a self-selecting group, leading to a heightened risk of unconscious bias and therefore an increased risk of incorrect prognostication. Baroness Grey-Thompson the noble Baroness, in oral evidence to the Lords Select Committee, noted that the diagnosis of six months does not protect disabled people, arguing that the time limit could easily be eroded or doctors might intentionally overlook the six month criterion due to inherent discrimination against disabled people.
My Lords, there's also the risk of confirmation bias, particularly where a doctor decides to initiate a conversation about assisted dying with a patient. In so doing, the doctor has reached certain judgements about the patient. However, the doctor's assessment of the context in which the patient lives may be uninformed and when coming to a decision about whether the patient has more or fewer than six months to live, their initial judgement may be confirmed by them as a consequence of unrecognised confirmation bias.
If the doctor has made a decision that something may happen, but is unaware of factors which may impact on the patient's decision making, the doctor may well feel confirmed in his judgement after discussions with the patient. That is a significant risk given the extent to which patients generally believe that the information and advice given to doctors is to improve or enhance their situation, and also the extent to which patients have difficulty in comprehending what they're being told during these very sensitive discussions.
It's a very difficult issue, but the evidence is very sobering when one considers that an assisted death doesn't just deprive the patient of a future, but it also deprives those who love them of a future together, which may last years. It is for that reason that I seek the. I support these amendments which seek to clarify what the standard should be. A further question is, does this bill apply a proper test for access to assisted suicide? Autonomy is the all important other factor.
Once a person has a diagnosis and the requisite prognosis, this test is not widely used in other jurisdictions, and the consequence of using it is that under the Bill, no consideration of all the issues which have been discussed thus far during the Bill's progress through your Lordships House inability to access palliative care, pregnancy, disability, serious mental illness, poverty, bad or no housing, a sense of being a burden. The noble Lord, Lord Faulkner, told us that these considerations may properly contribute to a person reaching a clear, settled and informed wish to die.
However, it can well be argued that a person's problems due perhaps to poverty, isolation or a fear of being a burden could be addressed if they had a little more money or a decent place to live, they may well choose to live, not to die. In so many cases, it is the circumstances of their lives which lead so many people in other jurisdictions to seek assisted suicide and euthanasia, not illness. People talk of the right to choose to die, but they do not talk of the effect of being crushed by poverty and isolation, especially if it's accompanied, as it is in so many cases of terminal illness by disability.
And people think there's no way forward for them. The bill could lead to the rich and comfortable rejecting assisted dying and opting for palliative care in all its forms, and living contentedly and normally without suffering for much longer than the six month prognosis. While the poor and the marginalised die. This bill could lead to to those with serious mental health problems, choosing assisted dying at a moment of suicidal ideation. My Lords, the CQC report on the Mental Health Act, published last week, told us that black people are being detained at four times the rate of white people and that people living in deprived areas are 3.6 times more likely to be detained under the act than other people.
I do not think this is covered in the impact assessment. My Lords, the answer to these problems is not to be found in killing people. Rather, it is to be found in caring for them.
My Lords, that means that 68% of patients receive an incorrect prognosis in that range, and they may find themselves qualifying and choosing to die thinking that this is what's going to happen to them anyway, when they could have lived so much longer and their families and friends could have benefited from them continuing to live. Murray and Atkin, writing in the BMJ, said there are no valid tools, tests or clinical clinical examinations that can reliably and safely identify that a person is expected to die within six months.
And Paddy Stone, who's a former head of the Marie Curie Palliative Care Research Department at UCL, agreed. My research demonstrates there's no reliable way to identify patients with 6 to 12 months to live, at least no method that would be reliable enough to act as a safeguard for the proposed assisted dying legislation. And Professor Martin Vernon, of the British Geriatrics Society told the committee doctors and health professionals are very good at predicting when someone is going to die within 1 to 3 days.
They are also very good at predicting when someone's likely to survive beyond a year. In between those days, those times, it's almost impossible for a doctor to predict genuinely accurately. We have heard so often in the course of these proceedings that those who have disabilities are terrified that their lives will be seen as lesser value, and that they'll be identified as suitable for assisted death at some stage when they're suffering from pneumonia or unhealed pressure sore, for example, we know that there is a significant risk of unconscious bias against such patients.
Doctor Alex Hughes of King's College Hospital, noted in written evidence that doctors who choose to participate in assisted dying may be a self-selecting group, leading to a heightened risk of unconscious bias and therefore an increased risk of incorrect prognostication. Baroness Grey-Thompson the noble Baroness, in oral evidence to the Lords Select Committee, noted that the diagnosis of six months does not protect disabled people, arguing that the time limit could easily be eroded or doctors might intentionally overlook the six month criterion due to inherent discrimination against disabled people.
My Lords, there's also the risk of confirmation bias, particularly where a doctor decides to initiate a conversation about assisted dying with a patient. In so doing, the doctor has reached certain judgements about the patient. However, the doctor's assessment of the context in which the patient lives may be uninformed and when coming to a decision about whether the patient has more or fewer than six months to live, their initial judgement may be confirmed by them as a consequence of unrecognised confirmation bias.
If the doctor has made a decision that something may happen, but is unaware of factors which may impact on the patient's decision making, the doctor may well feel confirmed in his judgement after discussions with the patient. That is a significant risk given the extent to which patients generally believe that the information and advice given to doctors is to improve or enhance their situation, and also the extent to which patients have difficulty in comprehending what they're being told during these very sensitive discussions.
It's a very difficult issue, but the evidence is very sobering when one considers that an assisted death doesn't just deprive the patient of a future, but it also deprives those who love them of a future together, which may last years. It is for that reason that I seek the. I support these amendments which seek to clarify what the standard should be. A further question is, does this bill apply a proper test for access to assisted suicide? Autonomy is the all important other factor.
Once a person has a diagnosis and the requisite prognosis, this test is not widely used in other jurisdictions, and the consequence of using it is that under the Bill, no consideration of all the issues which have been discussed thus far during the Bill's progress through your Lordships House inability to access palliative care, pregnancy, disability, serious mental illness, poverty, bad or no housing, a sense of being a burden. The noble Lord, Lord Faulkner, told us that these considerations may properly contribute to a person reaching a clear, settled and informed wish to die.
However, it can well be argued that a person's problems due perhaps to poverty, isolation or a fear of being a burden could be addressed if they had a little more money or a decent place to live, they may well choose to live, not to die. In so many cases, it is the circumstances of their lives which lead so many people in other jurisdictions to seek assisted suicide and euthanasia, not illness. People talk of the right to choose to die, but they do not talk of the effect of being crushed by poverty and isolation, especially if it's accompanied, as it is in so many cases of terminal illness by disability.
And people think there's no way forward for them. The bill could lead to the rich and comfortable rejecting assisted dying and opting for palliative care in all its forms, and living contentedly and normally without suffering for much longer than the six month prognosis. While the poor and the marginalised die. This bill could lead to to those with serious mental health problems, choosing assisted dying at a moment of suicidal ideation. My Lords, the CQC report on the Mental Health Act, published last week, told us that black people are being detained at four times the rate of white people and that people living in deprived areas are 3.6 times more likely to be detained under the act than other people.
I do not think this is covered in the impact assessment. My Lords, the answer to these problems is not to be found in killing people. Rather, it is to be found in caring for them.
10:21
Lord Moylan (Conservative)
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Lord Moylan (Conservative)
Lords, I have four amendments in this group. Three of them are this group. Three of them are closely related. They are 85 894 and 896, the latter two being and 896, the latter two being consequential on 85. I also have amendment number 100, but I will come back to that towards the end. I'm grateful to the noble Baroness Lane-Fox Buckley and my noble friend Lord Hamilton of Epsom for giving their names, lending their names to number 85, and to the noble Lord, Lord Carlile of Berriew, for adding his name to 89.
For my Lords, one of the concerns about this Bill is the possibility that the condition that qualifies, it's one of the key qualifications to have a terminal illness that that the definition of that qualification becomes expanded over time. What I'm going to call creep, I'm not going to detain the House with examples from other jurisdictions, but there are examples from other jurisdictions where the scope for assisted dying has been made available to people with conditions that would hardly qualify as terminal illness and might not, might well not have qualified as appropriate in the minds of the legislators who first put the legislation together.
And I think it would give the public some confidence in the bill if they were to know that that capacity for creep was severely limited. My suggestion for limiting it is that there should be a list of what constitutes terminal illness. I'm not suggesting this list should be on the face of the bill. I believe the list should be issued by the Secretary of State by way of regulation, and it should be updated periodically in the light of medical advice.
I'm going to turn now to a couple of questions I've got for the noble and learned Lord, Lord Falconer. And then I will deal with some objections that might be raised. My first question concerns his own definition in clause two. In the first line of subsection one, where he in subsection one A, where he says the person has an inevitably progressive illness or disease, inevitably progressive illness or disease, which cannot be reversed by treatment. And my question to him is in the first places whether he regards inevitable and progressive as adding anything to the notion of depth of, of term, of being terminal.
In other words, is 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? And if you left them out, the scope of the definition would be just the same. I'd be. I'd be interested to know his answer to that, although it doesn't affect directly what I'm 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 didn't always die from one illness.
Sometimes they had two terminal illnesses, or they had complications or comorbidities. And medically, I'm sure that is absolutely the case. But I don't think it's relevant to what I'm arguing for, because the bill is clear that you have to pass certain qualifications, certain thresholds, in order to be considered for assisted dying. And one of them is that you have an inevitably progressive illness or disease which cannot be reversed by treatment, but you only have to have one of them in order to qualify.
You could have two, but you would still qualify. It's irrelevant. You could. You could have one with several comorbidities and you would still qualify. So it doesn't matter in the case of an individual how they might die. In the end, what matters is their condition at a particular moment and whether they have a an inevitably progressive illness or disease at a particular time. So applying the list doesn't seem to me very difficult. 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 actually, 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, if one considers the list of diseases or illnesses they 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 90s. It completely shocked us.
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 if there were such an eventuality. Heaven forfend in the future, it allows for the Secretary of State to adjust the list. So we do know what it is, people, and we can put them together. And then the Secretary of State can make a list, and it will be subject to scrutiny, because all regulations made under this bill, I think the noble and learned Lord will confirm, have to be made by affirmative Statutory Instrument.
So it will be subject to scrutiny and people will be able to comment. And I think that would give them great assurance that creep was not going to be a feature of this. So I'd be grateful to her. The noble and learned Lords response to that proposal. I'm going to come now, briefly, if I may, to my final amendment in this group, which is quite different, which is amendment 100. This is genuinely probing because when I read the bill and I got to clause two, subsection four, I found a sentence which began nothing in this subsection results.
It was strange. Typographically because it's it isn't a new paragraph. There isn't a paragraph break, but nor does it run on directly as a sentence. It's obviously been botched in at some point, probably in the other place. Anyway, these things happen. So I read it, and then I read it again, and I read it over and over again, and at the end of it, I still could not work out what this sentence beginning in, in, in two for nothing in this subsection results what it actually means.
And even if I could construe it in such a way that it did mean something, I wouldn't know what it meant. In the context of clause two. So this is simply this is a genuine probing opportunity for clarity from the noble and learned Lord as to what import he thinks this sentence has in clause two. It would greatly, I think, certainly please me, and I think many other noble Lords, if we understood that, and if we understood whether in fact it should stand or be swept away.
My proposal to delete it is, as I say at this stage, entirely probing. In order to hear what the
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noble and learned Lord has to say. My Lords, I tabled amendment. 73.
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73. One of the issues about this is about whether an illness, a disease, about whether an illness, a disease, is terminal without treatment, and a simple example of that is type a simple example of that is type one diabetes. So the World Health
For my Lords, one of the concerns about this Bill is the possibility that the condition that qualifies, it's one of the key qualifications to have a terminal illness that that the definition of that qualification becomes expanded over time. What I'm going to call creep, I'm not going to detain the House with examples from other jurisdictions, but there are examples from other jurisdictions where the scope for assisted dying has been made available to people with conditions that would hardly qualify as terminal illness and might not, might well not have qualified as appropriate in the minds of the legislators who first put the legislation together.
And I think it would give the public some confidence in the bill if they were to know that that capacity for creep was severely limited. My suggestion for limiting it is that there should be a list of what constitutes terminal illness. I'm not suggesting this list should be on the face of the bill. I believe the list should be issued by the Secretary of State by way of regulation, and it should be updated periodically in the light of medical advice.
I'm going to turn now to a couple of questions I've got for the noble and learned Lord, Lord Falconer. And then I will deal with some objections that might be raised. My first question concerns his own definition in clause two. In the first line of subsection one, where he in subsection one A, where he says the person has an inevitably progressive illness or disease, inevitably progressive illness or disease, which cannot be reversed by treatment. And my question to him is in the first places whether he regards inevitable and progressive as adding anything to the notion of depth of, of term, of being terminal.
In other words, is 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? And if you left them out, the scope of the definition would be just the same. I'd be. I'd be interested to know his answer to that, although it doesn't affect directly what I'm 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 didn't always die from one illness.
Sometimes they had two terminal illnesses, or they had complications or comorbidities. And medically, I'm sure that is absolutely the case. But I don't think it's relevant to what I'm arguing for, because the bill is clear that you have to pass certain qualifications, certain thresholds, in order to be considered for assisted dying. And one of them is that you have an inevitably progressive illness or disease which cannot be reversed by treatment, but you only have to have one of them in order to qualify.
You could have two, but you would still qualify. It's irrelevant. You could. You could have one with several comorbidities and you would still qualify. So it doesn't matter in the case of an individual how they might die. In the end, what matters is their condition at a particular moment and whether they have a an inevitably progressive illness or disease at a particular time. So applying the list doesn't seem to me very difficult. 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 actually, 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, if one considers the list of diseases or illnesses they 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 90s. It completely shocked us.
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 if there were such an eventuality. Heaven forfend in the future, it allows for the Secretary of State to adjust the list. So we do know what it is, people, and we can put them together. And then the Secretary of State can make a list, and it will be subject to scrutiny, because all regulations made under this bill, I think the noble and learned Lord will confirm, have to be made by affirmative Statutory Instrument.
So it will be subject to scrutiny and people will be able to comment. And I think that would give them great assurance that creep was not going to be a feature of this. So I'd be grateful to her. The noble and learned Lords response to that proposal. I'm going to come now, briefly, if I may, to my final amendment in this group, which is quite different, which is amendment 100. This is genuinely probing because when I read the bill and I got to clause two, subsection four, I found a sentence which began nothing in this subsection results.
It was strange. Typographically because it's it isn't a new paragraph. There isn't a paragraph break, but nor does it run on directly as a sentence. It's obviously been botched in at some point, probably in the other place. Anyway, these things happen. So I read it, and then I read it again, and I read it over and over again, and at the end of it, I still could not work out what this sentence beginning in, in, in two for nothing in this subsection results what it actually means.
And even if I could construe it in such a way that it did mean something, I wouldn't know what it meant. In the context of clause two. So this is simply this is a genuine probing opportunity for clarity from the noble and learned Lord as to what import he thinks this sentence has in clause two. It would greatly, I think, certainly please me, and I think many other noble Lords, if we understood that, and if we understood whether in fact it should stand or be swept away.
My proposal to delete it is, as I say at this stage, entirely probing. In order to hear what the
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noble and learned Lord has to say. My Lords, I tabled amendment. 73.
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73. One of the issues about this is about whether an illness, a disease, about whether an illness, a disease, is terminal without treatment, and a simple example of that is type a simple example of that is type one diabetes. So the World Health
10:30
Baroness Coffey (Conservative)
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Baroness Coffey (Conservative)
Organisation classifies diabetes as a disease. And under the bill as it stands and has been pointed out by witnesses in the I think, the Commons Select Committee, oral evidence, that means anybody who decided that they weren't going to take their insulin for whatever reason, would automatically have a reversible disease. And without taking insulin, they will die. So one of the things that I wanted to explore in this amendment is, is that what we're thinking about? Now? It's perfectly we know that people can withdraw from treatment on lots of things.
That's not what we're debating today. There are other examples where the extent has been sorry things have been extended in other countries. I appreciate we'll be getting on to issues about anorexia and similar in another group, so I won't dwell on those. But even conditions like arthritis, my noble friends just referred to Aids. Those all an HIV is also issues to do with hernias. I've been led to believe where these have been used as examples of in effect, where without treatment it's irreversible.
So I think we should consider carefully and hear and understand why we aren't putting some kind of condition on what the definition of terminal illness is. I think the other thing, and I can't remember which professor it was that spoke it in the Commons Select committee. As it stands, they suggested in general practice and in clinical practice, if somebody decided in, in hospital or, or the GP to suddenly say, I'm not going to take my insulin anymore, there would be pretty much an immediate trying to understand why.
Why is somebody trying to accelerate their death in this way now, in this bill? It's the standard 2005 Mental Capacity Act. That's the test that is simply are they in the right mind to make this decision? And of course, people might disagree with that decision, but there's no further trying to understand which would happen in a regular kind of clinical practice way. So that's why I think we need to try and get a sense of terminal illness. We know successfully so many people do get treated for cancer.
We know also it's one of the biggest killers and we the cancer plan I'm sure recognised that yesterday. But I think that we should also be thinking carefully about some. I think safeguards isn't exactly the right word I would use in this case, but to think about processes that we need to get into place to try and understand what can we do further or expect clinicians further in this bill to start to be able to ask those sorts of questions when we consider what technically, of course, is a terminal illness.
But as we know, people can live an exceptionally long time. People live with diabetes type one and have very fulfilling lives. So I think we should reconsider this in terms of aspects of definition.
That's not what we're debating today. There are other examples where the extent has been sorry things have been extended in other countries. I appreciate we'll be getting on to issues about anorexia and similar in another group, so I won't dwell on those. But even conditions like arthritis, my noble friends just referred to Aids. Those all an HIV is also issues to do with hernias. I've been led to believe where these have been used as examples of in effect, where without treatment it's irreversible.
So I think we should consider carefully and hear and understand why we aren't putting some kind of condition on what the definition of terminal illness is. I think the other thing, and I can't remember which professor it was that spoke it in the Commons Select committee. As it stands, they suggested in general practice and in clinical practice, if somebody decided in, in hospital or, or the GP to suddenly say, I'm not going to take my insulin anymore, there would be pretty much an immediate trying to understand why.
Why is somebody trying to accelerate their death in this way now, in this bill? It's the standard 2005 Mental Capacity Act. That's the test that is simply are they in the right mind to make this decision? And of course, people might disagree with that decision, but there's no further trying to understand which would happen in a regular kind of clinical practice way. So that's why I think we need to try and get a sense of terminal illness. We know successfully so many people do get treated for cancer.
We know also it's one of the biggest killers and we the cancer plan I'm sure recognised that yesterday. But I think that we should also be thinking carefully about some. I think safeguards isn't exactly the right word I would use in this case, but to think about processes that we need to get into place to try and understand what can we do further or expect clinicians further in this bill to start to be able to ask those sorts of questions when we consider what technically, of course, is a terminal illness.
But as we know, people can live an exceptionally long time. People live with diabetes type one and have very fulfilling lives. So I think we should reconsider this in terms of aspects of definition.
10:33
Lord Young of Norwood Green (Labour)
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Lord Young of Norwood Green (Labour)
Decided to speak. I haven't spoken in this debate before, but it was actually Lord Pannick contribution that made me want to contribution that made me want to speak in, in, in this debate. And he reminded us that nobody could he reminded us that nobody could say that a doctor can tell you that you would 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 by.
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Is not down as being present. At week. When I was on the list, I
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When I was on the list, I checked. I checked before I. Went, not according to the one
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Went, not according to the one we are getting. To.
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And my name was on there. Yes. His name?
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Yeah. Sorry. Don't worry about it.
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Yeah. We don't. If it's the will of the house to hear him speak and find.
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find. Continue to write. Thank you. Well, I checked before I went. I'm puzzled. Right. So. It was. It was the. It was Lord So. It was. It was the. It was Lord Pannick comment that 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. Now, we know from all the evidence that we've heard that trying to predict when someone will die is not a precise science.
But that isn't really the point of of this, of this particular bill. It's about ensuring that people have got a right to choose, and that they're doing so in circumstances where we can feel reasonably confident that the safeguards are there. And when I look at the when I look at the bill and the safeguards are there, there's there they are. This is a very cautious step forward. Initial request for assistance. First declaration witnessing first declaration. First doctor's assessment.
Second doctor's assessment. Doctor's assessments. Further provision. I mean, sometimes when I listen to some of the noble Lords speaking as though we've just got one doctor who may not be very mature or experienced, that is not the case within this bill. It's much more it's much more careful. It's much more. It's much more cautious. And I think it was it was Baroness Jay of Paddington last time. Who says who said who reminded us that one of the international facts that supports entirely the position that we're taking is that in the 33 jurisdictions where assisted dying is allowed, it is usually the case, and she cites 1 or 2 that following the suggestion by a doctor or prognosis, wherever you want to describe it, over a third of those who make the choice has described then do not use the the provision.
There's no question that they want to die. They're simply using it almost as an insurance policy. So I understand that there is a there is a real difference of opinion within within this House. There are those who feel that if we make this step forward, I listen carefully to what Baroness O'Loan was saying, that if we make this step, if we don't put more things on the face of the bill, that that it will be unsafe. I don't I don't take that point of view.
I take I take the point, point of view that we are giving people, as Lord Pannick said to us, we're giving people the right, the right to choose. That may not that may not accord with everybody's view in this House. There are others that wanted us to take into account degree of suffering. There was others wanted to take into account all sorts of of circumstances. But I don't accord with that, do I take I take the view that we are trying to in, in this House with some difficulty.
We're trying to ensure that we've got a bill that does give us give people the right to choose, that has got significant safeguards in there. Can it can it help people in, can it guarantee that we can tell people exactly when they're going to die? Of course we can't. We heard evidence previously. Wes Streeting, the Minister, announced recently that cancer treatment, we're going to make significant improvements on that. That will change people's lives fundamentally. So on those grounds, in my view, anyway, I hope that the House will continue to support this bill.
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Is not down as being present. At week. When I was on the list, I
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When I was on the list, I checked. I checked before I. Went, not according to the one
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Went, not according to the one we are getting. To.
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And my name was on there. Yes. His name?
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Yeah. Sorry. Don't worry about it.
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Yeah. We don't. If it's the will of the house to hear him speak and find.
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find. Continue to write. Thank you. Well, I checked before I went. I'm puzzled. Right. So. It was. It was the. It was Lord So. It was. It was the. It was Lord Pannick comment that 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. Now, we know from all the evidence that we've heard that trying to predict when someone will die is not a precise science.
But that isn't really the point of of this, of this particular bill. It's about ensuring that people have got a right to choose, and that they're doing so in circumstances where we can feel reasonably confident that the safeguards are there. And when I look at the when I look at the bill and the safeguards are there, there's there they are. This is a very cautious step forward. Initial request for assistance. First declaration witnessing first declaration. First doctor's assessment.
Second doctor's assessment. Doctor's assessments. Further provision. I mean, sometimes when I listen to some of the noble Lords speaking as though we've just got one doctor who may not be very mature or experienced, that is not the case within this bill. It's much more it's much more careful. It's much more. It's much more cautious. And I think it was it was Baroness Jay of Paddington last time. Who says who said who reminded us that one of the international facts that supports entirely the position that we're taking is that in the 33 jurisdictions where assisted dying is allowed, it is usually the case, and she cites 1 or 2 that following the suggestion by a doctor or prognosis, wherever you want to describe it, over a third of those who make the choice has described then do not use the the provision.
There's no question that they want to die. They're simply using it almost as an insurance policy. So I understand that there is a there is a real difference of opinion within within this House. There are those who feel that if we make this step forward, I listen carefully to what Baroness O'Loan was saying, that if we make this step, if we don't put more things on the face of the bill, that that it will be unsafe. I don't I don't take that point of view.
I take I take the point, point of view that we are giving people, as Lord Pannick said to us, we're giving people the right, the right to choose. That may not that may not accord with everybody's view in this House. There are others that wanted us to take into account degree of suffering. There was others wanted to take into account all sorts of of circumstances. But I don't accord with that, do I take I take the view that we are trying to in, in this House with some difficulty.
We're trying to ensure that we've got a bill that does give us give people the right to choose, that has got significant safeguards in there. Can it can it help people in, can it guarantee that we can tell people exactly when they're going to die? Of course we can't. We heard evidence previously. Wes Streeting, the Minister, announced recently that cancer treatment, we're going to make significant improvements on that. That will change people's lives fundamentally. So on those grounds, in my view, anyway, I hope that the House will continue to support this bill.
10:38
Lord Shamash (Labour)
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Lord Shamash (Labour)
Yeah. My Lords, can I address the. On a personal note, my late the. On a personal note, my late brother in law suffered from muscular dystrophy. That is a horrendous progressive disease. horrendous progressive disease. Many of you may have come across it. The last years of his life were pushed around in a wheelchair. It was very difficult for the family
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and particularly difficult for my wife, his sister. The noble Lord isn't on the list,
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The noble Lord isn't on the list, so therefore wasn't there last week and shouldn't be taking part. me.
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We are. Yeah. Thank you. I apologise to to the
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Thank you. I apologise to to the members about that. The problem was in the later part of his life, his in the later part of his life, his lungs began to give way. And I remember him saying to me in the last 2 or 3 months of his life, I just wish somebody could help me here and so that I could end my life to watch somebody die like that. A member of your close family die from what is a horrendous disease, is something that I hope the House will take into account.
What I'm very concerned about is this clause 105, which I think is very, very tough indeed. And I sincerely hope that the House will actually reject this amendment
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it. Not. Agree the word model dies suffocating, suffocation? Yeah, can I apologise? The word is suffocating as his lungs began to to fade. Thank you.
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to fade. Thank you. If I could just rise and speak in support of Baroness Coffey amendment. And I'm going to talk about my sister, whom I did ask about my sister, whom I did ask before she died, whether I could bring her case before your Lordships. And she said, yes, and I
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and particularly difficult for my wife, his sister. The noble Lord isn't on the list,
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The noble Lord isn't on the list, so therefore wasn't there last week and shouldn't be taking part. me.
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We are. Yeah. Thank you. I apologise to to the
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Thank you. I apologise to to the members about that. The problem was in the later part of his life, his in the later part of his life, his lungs began to give way. And I remember him saying to me in the last 2 or 3 months of his life, I just wish somebody could help me here and so that I could end my life to watch somebody die like that. A member of your close family die from what is a horrendous disease, is something that I hope the House will take into account.
What I'm very concerned about is this clause 105, which I think is very, very tough indeed. And I sincerely hope that the House will actually reject this amendment
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it. Not. Agree the word model dies suffocating, suffocation? Yeah, can I apologise? The word is suffocating as his lungs began to to fade. Thank you.
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to fade. Thank you. If I could just rise and speak in support of Baroness Coffey amendment. And I'm going to talk about my sister, whom I did ask about my sister, whom I did ask before she died, whether I could bring her case before your Lordships. And she said, yes, and I
10:40
Lord Farmer (Conservative)
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Lord Farmer (Conservative)
have brought her case. She had a very unhappy life. She was badly abused when she was a child. She abused when she was a child. She tried to kill herself three times before she was 20. Now, thankfully before she was 20. Now, thankfully we she stayed alive until she was 75 and all the time she expressed a will, I don't want to live. When I came in here on the day I came in came in here on the day I came in here and was introduced, 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. She refused treatment. OK, so she allowed the lung cancer to kill her. But at all times she had the option to allow her to have treatment for the lung cancer. And so the autonomy she had there was that she could actually take the positive route. She decided not to. She didn't have any assistance from anybody else. And she died actually fairly peacefully when she was 75.
And so I just want to bring that as a case to your Lordships House in support of what Baroness Coffey was saying. My Lord, I rise to 105.
However, thereafter she developed lung cancer. She had been a smoker and she was obviously dying. She refused treatment. OK, so she allowed the lung cancer to kill her. But at all times she had the option to allow her to have treatment for the lung cancer. And so the autonomy she had there was that she could actually take the positive route. She decided not to. She didn't have any assistance from anybody else. And she died actually fairly peacefully when she was 75.
And so I just want to bring that as a case to your Lordships House in support of what Baroness Coffey was saying. My Lord, I rise to 105.
10:42
Lord Shinkwin (Conservative)
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Lord Shinkwin (Conservative)
In the name of Lord Hunt of >> In the name of Lord Hunt of Kings Heath, to which I've added my Kings Heath, to which I've added my name, my Lords, I'm 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 says 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. My Lords, I to imagine that some noble Lords might step at all as to how an NHS founded on the principle of equal access to treatments free at the point of delivery, to 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 human beings, being humans, we bring our prejudices and as the Lord Bowness Baroness O'Loan so ably reminded us, are unconscious bias to worked 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 treatments, may never be cured. And 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, but he was laughing and joking with another patient soon afterwards.
All I know is that I experienced an immediately recognised discrimination, as if somehow I chose to look or sound like this. I most definitely did not. Yet I'm discriminated against it, against because of it. Well, I'll never forget that. When I was beginning my slow and painful recovery following neurosurgery 30 years ago, it wasn't the intense pain or the absolute exhaustion which nearly killed me, but rather the shocking and brutal awareness that some of the nursing and medical staff's expectations for my recovery and life chances were so unbelievably low.
Here is I, a young man who, only 24 hours earlier, had taken a toll from a Minister, confirming that a charity campaign I've led on had secured £50 million, suddenly reduced to being unable to speak, to swallow, to breathe independently. Trust by the cultural presumption that, as a disabled person I should have minimal expectations for the rest of my life. My Lords, I share this lived experience which left me with a diagnosis of PTSD at the age of 25, and which I would much rather have consigned to the deepest recesses of my mind, because it is directly relevant to this amendment.
Sadly, there are so few of us in your Lordships' House who can draw on such lived experience and insights. Which brings me to another essential point. It's this the noble and learned Lord Falconer of Thoroton has raised the issue of legitimacy. My Lords, specifically in relation to amendment 105. Given that your Lordships' House is so desperately unrepresentative, not just of disabled people, but particularly on people with lifelong congenital conditions, perhaps a noble and learned Lord Willetts explain in his closing remarks as to why on earth any non-disabled member of this House would presume that it is a law making body.
It has either the authority or the credibility, or indeed the legitimacy to reject this amendment. My Lords, it has none. And I remind your Lordships House that not one, not one organisation of or for disabled people supports this Bill. My Lords, I have another question. I was given a six month terminal diagnosis as a last resort. I was operated on for 12 hours and it all into one of the surgeons who took great pleasure in telling me afterwards.
It was pretty aggressive surgery, but hey, I was going to die anyway. But some miracle. Having spent three years learning to talk again, I'm still here. Yet my overall condition is inevitably progressive and cannot be reversed by treatment. So I wonder if I would qualify for assisted dying. Perhaps I would in time, but I'd be far less likely to fall victim to scope creep if this amendment was passed. I mentioned scope creep.
I fear that this bill implicitly puts a price on my head, and people with lifelong congenital conditions, because it effectively facilitates a pathway whereby withholding expensive treatments risks making people like me eligible for assisted dying. My Lord, let us remember that some people are determined that this bill, as has been the case in other jurisdictions, is only the beginning already. My death. My decision had criticised the bill as inadequate.
Now I have huge respect for lawyers, particularly those in your Lordships' House. But that doesn't mean I'm comfortable about the likelihood that some of them may pose to extend the law, perhaps using the. My Lords, this bill poses a very real and present danger for people with lifelong congenital conditions. This amendment is crucial to mitigating that threat. So I close with this appeal to the noble and learned Lords. Please will he accept this amendment until I asked him to confirm that he agrees with me that after consideration of this crucial amendment, should neither be filibustering?
This amendment would give those of us with lifelong congenital conditions some protection. My Lords, I to imagine that some noble Lords might step at all as to how an NHS founded on the principle of equal access to treatments free at the point of delivery, to 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 human beings, being humans, we bring our prejudices and as the Lord Bowness Baroness O'Loan so ably reminded us, are unconscious bias to worked 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 treatments, may never be cured. And 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, but he was laughing and joking with another patient soon afterwards.
All I know is that I experienced an immediately recognised discrimination, as if somehow I chose to look or sound like this. I most definitely did not. Yet I'm discriminated against it, against because of it. Well, I'll never forget that. When I was beginning my slow and painful recovery following neurosurgery 30 years ago, it wasn't the intense pain or the absolute exhaustion which nearly killed me, but rather the shocking and brutal awareness that some of the nursing and medical staff's expectations for my recovery and life chances were so unbelievably low.
Here is I, a young man who, only 24 hours earlier, had taken a toll from a Minister, confirming that a charity campaign I've led on had secured £50 million, suddenly reduced to being unable to speak, to swallow, to breathe independently. Trust by the cultural presumption that, as a disabled person I should have minimal expectations for the rest of my life. My Lords, I share this lived experience which left me with a diagnosis of PTSD at the age of 25, and which I would much rather have consigned to the deepest recesses of my mind, because it is directly relevant to this amendment.
Sadly, there are so few of us in your Lordships' House who can draw on such lived experience and insights. Which brings me to another essential point. It's this the noble and learned Lord Falconer of Thoroton has raised the issue of legitimacy. My Lords, specifically in relation to amendment 105. Given that your Lordships' House is so desperately unrepresentative, not just of disabled people, but particularly on people with lifelong congenital conditions, perhaps a noble and learned Lord Willetts explain in his closing remarks as to why on earth any non-disabled member of this House would presume that it is a law making body.
It has either the authority or the credibility, or indeed the legitimacy to reject this amendment. My Lords, it has none. And I remind your Lordships House that not one, not one organisation of or for disabled people supports this Bill. My Lords, I have another question. I was given a six month terminal diagnosis as a last resort. I was operated on for 12 hours and it all into one of the surgeons who took great pleasure in telling me afterwards.
It was pretty aggressive surgery, but hey, I was going to die anyway. But some miracle. Having spent three years learning to talk again, I'm still here. Yet my overall condition is inevitably progressive and cannot be reversed by treatment. So I wonder if I would qualify for assisted dying. Perhaps I would in time, but I'd be far less likely to fall victim to scope creep if this amendment was passed. I mentioned scope creep.
I fear that this bill implicitly puts a price on my head, and people with lifelong congenital conditions, because it effectively facilitates a pathway whereby withholding expensive treatments risks making people like me eligible for assisted dying. My Lord, let us remember that some people are determined that this bill, as has been the case in other jurisdictions, is only the beginning already. My death. My decision had criticised the bill as inadequate.
Now I have huge respect for lawyers, particularly those in your Lordships' House. But that doesn't mean I'm comfortable about the likelihood that some of them may pose to extend the law, perhaps using the. My Lords, this bill poses a very real and present danger for people with lifelong congenital conditions. This amendment is crucial to mitigating that threat. So I close with this appeal to the noble and learned Lords. Please will he accept this amendment until I asked him to confirm that he agrees with me that after consideration of this crucial amendment, should neither be filibustering?
10:51
Lord Evans of Rainow (Conservative)
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Lord Evans of Rainow (Conservative)
Yes. Sir, Lord Shamash mentioned a very moving story from his family a very moving story from his family regarding Duchenne muscular dystrophy, and I've got a very similar story, but from a slightly similar story, but from a slightly different angle. My cousin Stephen was diagnosed with Duchenne muscular dystrophy in 1960s, and in the 1960s this was a terminal illness without any real idea of prognosis other than they would die as very, very young people. But my family were determined to try and make Stephen's life as comfortable as possible and as long as as possible.
And they campaigned with their local MP, who just so happened to be Alf Morris, Baron Morris of Manchester, an outstanding Member of Parliament and a service to this House. And they worked with him to come up with the Disability and Chronically Sick and Disabled Persons Act 1970. They went on to then develop therapies for Duchenne muscular dystrophy, including making wheelchair provision compulsory on the NHS, and my cousin lived five years longer than the average of Duchenne muscular dystrophy patients.
So the point I'm making to the Lordships house if if you use this assisted dying bill to that extent, if we'd given up when he was a very, very young man, that never happened. He had a full life in his so far as he could, and he lived till he was 21, 21 years of age, when he was an average age of 14 or 15. So it just goes to say, if you give up at a very early stage, you don't know how far you can push this disease.
And in the 21st century, through medication, Duchenne muscular dystrophy sufferers do have an extended lifespan. So having an offering assisted dying to people with chronic diseases. You don't know the miracles of science and medication can extend these people's lives.
And they campaigned with their local MP, who just so happened to be Alf Morris, Baron Morris of Manchester, an outstanding Member of Parliament and a service to this House. And they worked with him to come up with the Disability and Chronically Sick and Disabled Persons Act 1970. They went on to then develop therapies for Duchenne muscular dystrophy, including making wheelchair provision compulsory on the NHS, and my cousin lived five years longer than the average of Duchenne muscular dystrophy patients.
So the point I'm making to the Lordships house if if you use this assisted dying bill to that extent, if we'd given up when he was a very, very young man, that never happened. He had a full life in his so far as he could, and he lived till he was 21, 21 years of age, when he was an average age of 14 or 15. So it just goes to say, if you give up at a very early stage, you don't know how far you can push this disease.
And in the 21st century, through medication, Duchenne muscular dystrophy sufferers do have an extended lifespan. So having an offering assisted dying to people with chronic diseases. You don't know the miracles of science and medication can extend these people's lives.
10:53
Lord Blencathra (Conservative)
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Lord Blencathra (Conservative)
The Lord. >> There's another peer who sat here for many hours last Friday, desperately keen to speak on on desperately keen to speak on on this group of amendments. And then towards the end, nearly about 5:30, I heard the magnificent speech from the noble Lord, the Lord Rook, who's not currently in his place. And it really was quite an incredibly good speech. And 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, and I commend it as being superb.
And then, my Lords, I concluded there was nothing I could usefully add to what the noble Lord had said. So I've decided not to try to add anything more to it, and I conclude my remarks.
And then, my Lords, I concluded there was nothing I could usefully add to what the noble Lord had said. So I've decided not to try to add anything more to it, and I conclude my remarks.
10:54
Lord Harper (Conservative)
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Lord Harper (Conservative)
My Lords, I'm going to speak very briefly. I just wanted to put one useful piece of information on one useful piece of information on the record, because it's been very relevant to the debates that we've had. And somebody previously referenced the the government's, the welcome cancer plan that the government published, and I thought it just worth sharing with the House. There was a very important, relevant piece of information in the cancer plan that your Lordships might wish to be aware of on previous occasions.
And I think the noble Lord Lord Stevens of Birmingham set this out. He referred to the government's plan for palliative care. And when we spoke about it, I think just last week, the expectation was that that plan was going to be published this autumn, and I hope the Minister can confirm that I've I've got this right when she speaks in the cancer plan. It's now been made clear that and I quote next, next year we will publish a modern service framework on palliative and end of life care to address these challenges.
So without being explicit about it, the the palliative care plan has now slipped into 2027. No indication of when in 2027. And given my experience of these things, it could easily be the end of 2027. So we're being asked again to consider this bill when the government's isn't even going to publish its plan on palliative care until sometime next year. And it's already now slipped twice in a few months. And I think I draw two lessons from that.
One is if you don't have high quality, universally available palliative care, then you're not giving people a genuine choice. And as my noble friend Lord Shinkwin said, there are expectations in society which will push people inevitably towards assisted suicide. Whether they really want that to be the case or not. The second thing it says to me is that palliative care isn't really a priority for the government. If you can't even produce the plan, which was originally going to be this year, if you can't even produce the plan for improving palliative care until some time next year, with no specific date attached to it, heaven knows what your priority is going to be actually delivering the services that people require.
My sense is if the plan is not coming out till next year, we're not even going to see improved services in this Parliament, in which case there's no meaningful choice. And on that basis, we shouldn't proceed
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with this bill. I speak to.
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I speak to. Amendments 82 and 83 A, which I've added my name to that of Lord I've added my name to that of Lord Polak. And I do note that amendment 83 has been withdrawn, which was 83 has been withdrawn, which was tabled by my noble friend Baroness Murphy and the noble Lady, Lady Nokes, which would have extended Nokes, which would have extended the period of eligibility from 6 to 12 months for neurological conditions. I add my name to these
And I think the noble Lord Lord Stevens of Birmingham set this out. He referred to the government's plan for palliative care. And when we spoke about it, I think just last week, the expectation was that that plan was going to be published this autumn, and I hope the Minister can confirm that I've I've got this right when she speaks in the cancer plan. It's now been made clear that and I quote next, next year we will publish a modern service framework on palliative and end of life care to address these challenges.
So without being explicit about it, the the palliative care plan has now slipped into 2027. No indication of when in 2027. And given my experience of these things, it could easily be the end of 2027. So we're being asked again to consider this bill when the government's isn't even going to publish its plan on palliative care until sometime next year. And it's already now slipped twice in a few months. And I think I draw two lessons from that.
One is if you don't have high quality, universally available palliative care, then you're not giving people a genuine choice. And as my noble friend Lord Shinkwin said, there are expectations in society which will push people inevitably towards assisted suicide. Whether they really want that to be the case or not. The second thing it says to me is that palliative care isn't really a priority for the government. If you can't even produce the plan, which was originally going to be this year, if you can't even produce the plan for improving palliative care until some time next year, with no specific date attached to it, heaven knows what your priority is going to be actually delivering the services that people require.
My sense is if the plan is not coming out till next year, we're not even going to see improved services in this Parliament, in which case there's no meaningful choice. And on that basis, we shouldn't proceed
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with this bill. I speak to.
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I speak to. Amendments 82 and 83 A, which I've added my name to that of Lord I've added my name to that of Lord Polak. And I do note that amendment 83 has been withdrawn, which was 83 has been withdrawn, which was tabled by my noble friend Baroness Murphy and the noble Lady, Lady Nokes, which would have extended Nokes, which would have extended the period of eligibility from 6 to 12 months for neurological conditions. I add my name to these
10:57
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
two amendments because I think it's important to have real clarity on important to have real clarity on what we mean by six month diagnosis, and also have specialist certification by an independent consultant. And the reason I added my name to these two amendments, because Professor Paddy Stone, because Professor Paddy Stone, who's the former head of Marie Curie Palliative Care Research Department at UCL, said there's no Department at UCL, said there's no real reliable way to identify patients with a 6 to 12 month diagnosis and at least no method which would provide an adequate safeguard.
And we have to remember, there is no Royal College that supports this bill or thinks the safeguards in this bill are good enough. Amendments 97 and 98 are really tidying up amendments of the language of this bill. It's quite minor, but person with a disability doesn't exist in law. It's used interchangeably in this bill and society, but with the disability suggests that my impairment is something I can pick up or put down at will, which I can't. And I think to show some understanding of what disabled people experience, then it should be the language of both the DDA and the Equality Act, and recognising that the social model of disability exists.
Now, I don't know if the drafting was a refutation of the social model or perhaps a drafting mistake, but it does show a lack of connection to disabled people and deaf and disabled peoples organisations. We're told that language changes all the time and it really doesn't. There may be different language used around the world, but this is British law and we should use the the words that are in acts that already exist. Last week, the noble Lord Harper raised things that we think we need fixing and never get around to.
And I thought of an example at the time, the DDA, which I sat on, sorry, 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. 31 years later, we still haven't sorted it. I have an amendment in the English devolution bill next week to fix that, but it's these examples. If we've got 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 Lord Hunt of Kings Heath, my noble friend Baroness O'Loan again is looking about clarity of that six month diagnosis.
Now we're constantly told there's nothing to worry about, but it's easy soundbites. This bill is caught between two competing policies trying to ensure safety versus personal choice, and the state has a duty to ensure those choices are sufficiently informed and based on accurate medical assessment. So by building in an independent prognosis, this recognises that in a life ending law, the margin for error must be minimal and oversight must be robust. It sends a clear signal that assisted dying is exceptional, and that those who seek it must face rigorous, medically sound scrutiny that reinforces both public trust and protection for vulnerable individuals.
Other amendments in this group are about recognising whether condition is stable or not, and is there to protect disabled people whose impact of impairment might mirror a terminal condition. Now the noble Lord Lord Shinkwin talked about his impairment. I looked myself, I found out two years ago I only have one and a half kidneys. I would have thought that medical professionals would have told me that slightly earlier, but if I chose to stop catheterising, I would very quickly experience urinary tract infections. I would have backfilled my kidneys and I would get almost immediate kidney damage.
So would someone like me be included in this bill? We've had lots of letters from people with MND, lots of other conditions, who assume that if this bill passes, they would be part of it. And I think many of those conditions would not be included. So I find it interesting. The noble Lord, Lord Moylan, suggested about having a list. I think we have to think about this really clearly, because we might be giving false hope to people right now who think they're being included, when actually they wouldn't.
And I'd like to ask the noble Lord, the Minister, sorry, lady Minister, about what the government is doing about frailty, and we discuss frailty. Last week, 10% of people over 65 are frail. That goes up to nearly 50% for those over 85, 34, 30 to 40% of people over 65 are admitted to acute wards living with frailty. These things would all impact whether somebody would choose assisted suicide. And I recognise that this does cross into some of the groups that we're going to be talking about later, about whether someone may refuse treatment.
I'd like to thank the noble and learned Lord for meeting yesterday. We probably agree to disagree on whether he's answering questions in the chamber, so I would like to know whether the noble and learned Lord has read the paper by the Complex Life and Death Decisions group at King's College London, which perfectly captures some of the issues that we're trying to grapple with. Now. One of the examples in that paper was someone with diabetes who took insulin, who managed their condition but becomes depressed, decides to stop taking the insulin knowing that they will die.
So they might be able to request assisted suicide. Would this person be eligible for this bill? And I am worried about the pressures that doctors would be under when they make judgements about quality of life. We've got to be really careful that any safeguard doesn't slip to 7 or 8 months, or expansion comes via the back door. My Lords, I also want to raise the issue of my noble friend Baroness Campbell of Surbiton having to contribute remotely. So any disabled peer who is allowed to speak remotely has to speak first in the debate.
After the mover of the amendment, they have no opportunity to raise questions or intervene. I recognise the technology is not easy, but they are not able to contribute in this debate on an equal basis. And I've said before, it would be sad if the only place that we're talking about equal access for disabled people in this country would be through this bill. But, my Lords, this is Parliament. If we can't give equal access to disabled people here, what are we actually doing? The noble my noble friend Lord Pannick spoke last week and very passionately about the word reasonable.
My Lords, the word reasonable is a very difficult word for disabled people. We were promised reasonable adjustment in both the DDA and the Equality Act, and actually reasonable sounded reasonable at the time. But actually it's a word that is used to stifle and actually stop inclusion of disabled people. So last week's debates made me even more convinced that we have to provide really good information to people who are requesting assisted suicide, so they absolutely understand the pros and cons of what they're entering into.
So, my Lords, I think this clarity is really, really important. I don't think we can necessarily have a list, but at the moment I think it's way too vague. And many of us have talked about the equality impact assessment. We don't think it's good enough. We've been told the government's not going to revisit it, but actually I don't believe the numbers in that equality impact assessment. I believe they're going to be much higher than we think they are. My final point is I also want to raise the issue of the palliative care framework.
And when that report is going to come out. When I met with the noble and learned Lord yesterday, we talked about reassurance whether we could actually get this debate into it started off as tenant groups. I think the noble and learned Lord is now saying whether we could agree to 20 groups. Well, my Lord, I said yesterday to noble Lord, Lord, I'm not able to even think about what that grouping might look like until we've got the answers to some of these questions.
And actually, I do think it's really important that we have there's some urgency around the palliative care framework and that report being launched, because we're not going to have reassurance about what the world is going to look like until we see that data. So I'd be very grateful for the noble Lady, the Minister, to answer that. And I'm very much looking forward to the noble and learned Lords answers to the questions I've raised today.
And we have to remember, there is no Royal College that supports this bill or thinks the safeguards in this bill are good enough. Amendments 97 and 98 are really tidying up amendments of the language of this bill. It's quite minor, but person with a disability doesn't exist in law. It's used interchangeably in this bill and society, but with the disability suggests that my impairment is something I can pick up or put down at will, which I can't. And I think to show some understanding of what disabled people experience, then it should be the language of both the DDA and the Equality Act, and recognising that the social model of disability exists.
Now, I don't know if the drafting was a refutation of the social model or perhaps a drafting mistake, but it does show a lack of connection to disabled people and deaf and disabled peoples organisations. We're told that language changes all the time and it really doesn't. There may be different language used around the world, but this is British law and we should use the the words that are in acts that already exist. Last week, the noble Lord Harper raised things that we think we need fixing and never get around to.
And I thought of an example at the time, the DDA, which I sat on, sorry, 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. 31 years later, we still haven't sorted it. I have an amendment in the English devolution bill next week to fix that, but it's these examples. If we've got 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 Lord Hunt of Kings Heath, my noble friend Baroness O'Loan again is looking about clarity of that six month diagnosis.
Now we're constantly told there's nothing to worry about, but it's easy soundbites. This bill is caught between two competing policies trying to ensure safety versus personal choice, and the state has a duty to ensure those choices are sufficiently informed and based on accurate medical assessment. So by building in an independent prognosis, this recognises that in a life ending law, the margin for error must be minimal and oversight must be robust. It sends a clear signal that assisted dying is exceptional, and that those who seek it must face rigorous, medically sound scrutiny that reinforces both public trust and protection for vulnerable individuals.
Other amendments in this group are about recognising whether condition is stable or not, and is there to protect disabled people whose impact of impairment might mirror a terminal condition. Now the noble Lord Lord Shinkwin talked about his impairment. I looked myself, I found out two years ago I only have one and a half kidneys. I would have thought that medical professionals would have told me that slightly earlier, but if I chose to stop catheterising, I would very quickly experience urinary tract infections. I would have backfilled my kidneys and I would get almost immediate kidney damage.
So would someone like me be included in this bill? We've had lots of letters from people with MND, lots of other conditions, who assume that if this bill passes, they would be part of it. And I think many of those conditions would not be included. So I find it interesting. The noble Lord, Lord Moylan, suggested about having a list. I think we have to think about this really clearly, because we might be giving false hope to people right now who think they're being included, when actually they wouldn't.
And I'd like to ask the noble Lord, the Minister, sorry, lady Minister, about what the government is doing about frailty, and we discuss frailty. Last week, 10% of people over 65 are frail. That goes up to nearly 50% for those over 85, 34, 30 to 40% of people over 65 are admitted to acute wards living with frailty. These things would all impact whether somebody would choose assisted suicide. And I recognise that this does cross into some of the groups that we're going to be talking about later, about whether someone may refuse treatment.
I'd like to thank the noble and learned Lord for meeting yesterday. We probably agree to disagree on whether he's answering questions in the chamber, so I would like to know whether the noble and learned Lord has read the paper by the Complex Life and Death Decisions group at King's College London, which perfectly captures some of the issues that we're trying to grapple with. Now. One of the examples in that paper was someone with diabetes who took insulin, who managed their condition but becomes depressed, decides to stop taking the insulin knowing that they will die.
So they might be able to request assisted suicide. Would this person be eligible for this bill? And I am worried about the pressures that doctors would be under when they make judgements about quality of life. We've got to be really careful that any safeguard doesn't slip to 7 or 8 months, or expansion comes via the back door. My Lords, I also want to raise the issue of my noble friend Baroness Campbell of Surbiton having to contribute remotely. So any disabled peer who is allowed to speak remotely has to speak first in the debate.
After the mover of the amendment, they have no opportunity to raise questions or intervene. I recognise the technology is not easy, but they are not able to contribute in this debate on an equal basis. And I've said before, it would be sad if the only place that we're talking about equal access for disabled people in this country would be through this bill. But, my Lords, this is Parliament. If we can't give equal access to disabled people here, what are we actually doing? The noble my noble friend Lord Pannick spoke last week and very passionately about the word reasonable.
My Lords, the word reasonable is a very difficult word for disabled people. We were promised reasonable adjustment in both the DDA and the Equality Act, and actually reasonable sounded reasonable at the time. But actually it's a word that is used to stifle and actually stop inclusion of disabled people. So last week's debates made me even more convinced that we have to provide really good information to people who are requesting assisted suicide, so they absolutely understand the pros and cons of what they're entering into.
So, my Lords, I think this clarity is really, really important. I don't think we can necessarily have a list, but at the moment I think it's way too vague. And many of us have talked about the equality impact assessment. We don't think it's good enough. We've been told the government's not going to revisit it, but actually I don't believe the numbers in that equality impact assessment. I believe they're going to be much higher than we think they are. My final point is I also want to raise the issue of the palliative care framework.
And when that report is going to come out. When I met with the noble and learned Lord yesterday, we talked about reassurance whether we could actually get this debate into it started off as tenant groups. I think the noble and learned Lord is now saying whether we could agree to 20 groups. Well, my Lord, I said yesterday to noble Lord, Lord, I'm not able to even think about what that grouping might look like until we've got the answers to some of these questions.
And actually, I do think it's really important that we have there's some urgency around the palliative care framework and that report being launched, because we're not going to have reassurance about what the world is going to look like until we see that data. So I'd be very grateful for the noble Lady, the Minister, to answer that. And I'm very much looking forward to the noble and learned Lords answers to the questions I've raised today.
11:06
Lord Markham (Conservative)
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Lord Markham (Conservative)
As I think probably building on from that. I think that is correct. from that. I think that is correct. There are two different approaches here. There are those people amongst us who believe that choice should come first. And within that choice, obviously there should be protections and safeguards, and there are those people who equally have very firm beliefs that the restrictions should, should, should be in place as as protections first. And if I summarise these group of amendments, that's what a lot of them are about, saying that there are certain illnesses that should be excluded from it all.
Certain groups, such as disabled groups, that you should only be allowed to have this if you've got some kind of unbearable pain or or suffering, or there's no chance of treatments to extend it. And where I would come against this, I would like to bring two points in really. Firstly, that of public opinion, and that is overwhelmingly in favour of choice 70%. All the different opinion polls and I include disabled groups in that again show that disabled people are 70% in favour of that.
And then I'd say the personal experiences of those people who are terminally ill, and that is that firstly, they don't want to die. They'd be delighted if there's treatments that are going to extend their lives beyond six months on much longer. They'd be delighted for that. But for them, getting the opportunity to have a desk of their choosing is a great comfort in insurance. It doesn't mean that they're going to rush out and take it as soon as they have it.
In a lot of cases, about 30% in other countries, they won't use it at all. But the fact is they want it to be there like an insurance policy, so that if towards the end of their life, they really do have unbearable suffering. And that's how they define unbearable suffering, that might be pain, that might be a loss of dignity, that might be a feeling that they really don't want to go on. Whatever their choice is, it is their choice and their reason for that and wanting to do that.
And for me, that's the important thing that we're trying to make sure we can have it. Yes, with the protections. But at the end of the day, giving the people the ability and the autonomy that they can have, the comfort and the choice of being able to die in the way that they wish to as being the most fundamental right of all.
Certain groups, such as disabled groups, that you should only be allowed to have this if you've got some kind of unbearable pain or or suffering, or there's no chance of treatments to extend it. And where I would come against this, I would like to bring two points in really. Firstly, that of public opinion, and that is overwhelmingly in favour of choice 70%. All the different opinion polls and I include disabled groups in that again show that disabled people are 70% in favour of that.
And then I'd say the personal experiences of those people who are terminally ill, and that is that firstly, they don't want to die. They'd be delighted if there's treatments that are going to extend their lives beyond six months on much longer. They'd be delighted for that. But for them, getting the opportunity to have a desk of their choosing is a great comfort in insurance. It doesn't mean that they're going to rush out and take it as soon as they have it.
In a lot of cases, about 30% in other countries, they won't use it at all. But the fact is they want it to be there like an insurance policy, so that if towards the end of their life, they really do have unbearable suffering. And that's how they define unbearable suffering, that might be pain, that might be a loss of dignity, that might be a feeling that they really don't want to go on. Whatever their choice is, it is their choice and their reason for that and wanting to do that.
And for me, that's the important thing that we're trying to make sure we can have it. Yes, with the protections. But at the end of the day, giving the people the ability and the autonomy that they can have, the comfort and the choice of being able to die in the way that they wish to as being the most fundamental right of all.
11:09
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
My Lords, I'm grateful for the >> My Lords, I'm grateful for the contributions today on eligibility and definition of terminal illness. Once again, I'll keep detailed comments limited to amendments on which the government has major legal, technical or operational workability concerns. But if I could first give a reassurance to your Lordships House, responding to the observations of the noble Lord, Lord Harper and the noble Lady Baroness Grey-Thompson regarding the modern service framework on palliative care and end of life care, we do acknowledge there has been a drafting error which the noble Lord and the noble Lady have picked up, and the drafting error is indeed in the National Cancer Plan.
But my reassurance to your Lordships House is, as has been previously stated, the interim update will be published this spring and the full modern service framework will follow in the autumn. So it's purely down to drafting error. So if I can turn now to the amendments, amendments 71, 77 and 79 tabled by the noble Lady Baroness Finlay and amendments 83, a 104 and 105 tabled by the noble Lords Lord Pollock and Lord hunt, of of Kings Heath and the noble Lady Baroness Grey Thompson.
Noble Lords may wish to note the government's workability concern with this set of amendments. Key terms and concepts within these amendments are undefined, which may introduce uncertainty when determining who is eligible under the bill, and in particular under amendment 71, 77, 79. What it means to slow a disease. There is a risk that unclear eligibility criteria could result in ambiguity. 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 two or article eight of the EC, 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 each regulation 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.
Turning to amendment 75, also tabled by the noble Lady Baroness Finlay, that 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 choose to have treatment. In accordance with Nice guidelines. This amendment therefore, requires clinicians to make a judgement on a potentially hypothetical basis. Amendment 80, tabled by the noble Lady Baroness 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 progress 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 leave lead to ambiguity, including operational issues around which doctors are to assess life expectancy and to what standard. Amendment 44 for a, tabled by the noble Lady Baroness Finlay, seeks to change the bill's eligibility criteria from six months to three months at a later stage in the process, by requiring the panel to be satisfied, a person's death can be expected within three months before granting a certificate of eligibility.
This amendment would create significant workability concerns. Firstly, this amendment is in direct conflict with the eligibility criteria set out in clause one and clause two, which require that a person's death is to be reasonably expected within six months. Secondly, this amendment, by not including a test of reasonable expectation, would require a higher degree of confidence around the prognosis. It is likely to be challenging for a panel to assess this, given its reliance on evidence from the coordinating and independent doctors who will have applied a different six month test.
In addition, given the lack of clinical evidence and guaranteed information on which to base the panel's decision, there would be an increased risk of legal challenge. I now turn to amendments 85, 89 four and 89 six, tabled by the noble Lord, Lord Moylan, amendments 85 and 896 would require the Secretary of State to specify a complete list of illnesses or diseases that fall within the scope of what is terminally ill in regulations. As drafted, these amendments are likely to be unworkable, as it is often a combination of illnesses interacting as opposed to a single one that leads to a terminal diagnosis.
This means it would be extremely difficult, if not impossible, to accurately list all possible combinations of conditions that would lead to a prognosis of less than six months. This amendment leaves it to the Secretary of State to decide what counts as a terminal illness or disease, and the basis on which they are to do so is ambiguous. Amendment 894 would alter the commencement provisions, meaning that the voluntary Assisted Dying Commissioner would need to have substantive functions as well as to have been appointed within 12 months of Royal Assent.
If the bill, once enacted, would not otherwise fully operational within 12 months. This would mean that the Commissioner was being asked to exercise functions with respect to a service that did not yet exist. Finally, amendment 106, in the name of my noble friend Lord Hunt of Kings Heath, would affect those applying for an assisted death where the terminal illness has arisen from medical negligence, malpractice or omission by a healthcare professional institution. The process of obtaining an assisted death would be halted until all investigations, compensation and support had concluded.
This could delay assisted death to otherwise eligible people. As a person's medical history for their illness or disease would need to be assessed for negligence, malpractice, omission, or error before they would be eligible. My Lords, I make no other comment. No comment on the other amendments in this group. However, as noble Lords are aware, the amendments have not had technical drafting support from officials. Therefore, further revision and corresponding amendments may be needed to provide consistent and coherent terminology throughout the bill.
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Lady sits down. May I pursue the point she made about my amendment point she made about my amendment 85? My understanding of the bill as 85? My understanding of the bill as drafted is that one has to have an inevitably progressive illness or inevitably progressive illness or disease. Not that one has to have a disease. Not that one has to have a diagnosis, a six month diagnosis of your prognosis, of your death. Now, the two might be quite separate.
One might have, as the noble Lady said, a combination of circumstances which mean you're likely to die within six months without having a specific disease, identifiable disease. And the noble Baroness seems to be saying that the government's interpretation of this clause is that one doesn't need to have a specific, identifiable terminal illness. One simply needs to have a set of circumstances which together might result in a prognosis of death within six months. Now, if that is the case, and that is the government's view of the meaning of that clause, then as the noble Lady, the Minister seems to imply, that widens to an astonishing extent.
The conditions that might qualify for for this bill. And I would just like to hear the noble Lady, the Minister say, and possibly the noble and learned Lord, Lord Falconer, when he speaks, may want to comment on this, if that really is their interpretation, that it could be any set of circumstances that lead to a six month diagnosis
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illness. Perhaps if I could just briefly refer to look at the actual amendment, as I said in my response, that the workability concerns are about the specification of a list of illnesses or diseases, and I've of illnesses or diseases, and I've already outlined why they would be unworkable because of the fact that it's often that combination of illnesses as well as, I might add, complications of illnesses and that are interacting rather than that single one.
And I referred earlier to why it would be extremely difficult. So I have been looking at the very specifics of the amendment, but to do what it says would create more ambiguity than is amendment. But in reality, my response. Order, order my response is covering our concerns where I don't make a comment. As I say, there are no workability concerns.
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The Minister sits. Before the. Minister sits down as she will
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Minister sits down as she will know the. I have made it clear that know the. I have made it clear that I'm concerned about suffering in the last days of life, and one of the last days of life, and one of the key elements of that is palliative care. And when one talks palliative care. And when one talks about treatment, one of the incentives for death is suffering. Has the Minister got anything to say to the House about the status of palliative care within the National Health Service? And are there any plans afoot, and when are the plans going to be, and when will this particular course of treatment be available to people? Otherwise, many people faced with terminal illness will be very tempted to seek assisted suicide.
And I think that's should be discouraged.
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If I could gently say we are discussing a group of amendments discussing a group of amendments about the definition of terminal illness, to the point on palliative care that I have already placed a care that I have already placed a letter in the library of the house outlining all of the work in respect of palliative care, and I have also made reference to the modern service framework well.
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modern service framework well. Before the Minister sits down, I have to confess to having listened to my noble friend Lord Moylan in response to what the Minister said. To be a little confused, the Minister seemed to be saying in her comments about some of the amendments in this group that the problem with them, by having a list of conditions, was that you could quite often have a terminal diagnosis as a result of a group of conditions or circumstances or illnesses.
Now, my reading is that that isn't what the bill says. The bill seems to say for the purposes of the act, a person is terminally ill. If a they have an an inevitably progressive illness or disease. Not not lots of them. One 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. Now I read the amendment very carefully, which was talking about having a specified list of conditions which, incidentally, coming back to the point Lord Markham made is what the public, or twice as many people support that approach than a terminal illness.
The minister's answer in response to my noble friend Lord Moylan exchange, seemed to be disagreeing with what's actually in the bill. So I have to say, I'm now more confused than I
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was before she got to her feet. Can she clear that up? I'm. I'm sorry. The noble Lord
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I'm. I'm sorry. The noble Lord is confused, and I know that my noble friend, Lord Faulkner will be noble friend, Lord Faulkner will be pleased to assist him with that. Any confusion that there is in the
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Any confusion that there is in the case of this amendment. I suggested. The lady, the Minister, that the
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The lady, the Minister, that the answer to Lord Harper is very simple. A person, an unfortunate person, may have more than one inevitably progressive illness or disease, each of which will lead to their death within six months. And it's a standard principle of statutory interpretation that the
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singular includes the plural. Yeah. May I comment before the noble Lady sits down? I'd hesitate to Lady sits down? I'd hesitate to intervene on the noble Lord Lord Pannick, because that would be quite correctly stopped by the quite correctly stopped by the whips. But what the noble Lord is saying isn't to the point. Of course, one can have. If one has one fatal illness that is going to kill one in some time, in some time kill one in some time, in some time in the future, say a certain form of cancer.
1st May of course have another fatal illness, another illness, say heart disease. I'm not a medical person, which could equally see one off in at some point in the future. And that, of course, would be included in the scope entirely. Understand that that isn't quite what the noble Lady is saying. She is saying that one might have a combination of circumstances, each of which might be non-fatal in itself, but in combination might result in a terminal diagnosis within six months, so that one might, if one is a frail person, have.
And again, I'm not a medical person. Pneumonia combined with certain other conditions such that that combination could be very threatening and might lead to death within six months. But none of those instances would be fatal in themselves. Now that seems to be what the noble Lady the Minister is saying, but that is not, I suggest, what the bill is saying. There has to be an identifiable term.
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I'm not entirely clear what this is. An intervention or or or a is. An intervention or or or a speech, but if it's well, if you let me finish, if it's an intervention, it should be clearer and briefer than that and actually
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and briefer than that and actually have a question. So please come to a point. This is I'm sorry, this is exposed, something that has never exposed, something that has never been mentioned in relation to this bill before. And, and in the whole of our debate on terminal illness, of our debate on terminal illness, it's a matter of crucial importance. And I know the noble noble Lady, the Minister wants to dodge it, but it seems that the government's interpretation of of that, of of that I can't refer to it now.
Clause two one is very different from what it appears to say in its plain language.
But my reassurance to your Lordships House is, as has been previously stated, the interim update will be published this spring and the full modern service framework will follow in the autumn. So it's purely down to drafting error. So if I can turn now to the amendments, amendments 71, 77 and 79 tabled by the noble Lady Baroness Finlay and amendments 83, a 104 and 105 tabled by the noble Lords Lord Pollock and Lord hunt, of of Kings Heath and the noble Lady Baroness Grey Thompson.
Noble Lords may wish to note the government's workability concern with this set of amendments. Key terms and concepts within these amendments are undefined, which may introduce uncertainty when determining who is eligible under the bill, and in particular under amendment 71, 77, 79. What it means to slow a disease. There is a risk that unclear eligibility criteria could result in ambiguity. 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 two or article eight of the EC, 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 each regulation 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.
Turning to amendment 75, also tabled by the noble Lady Baroness Finlay, that 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 choose to have treatment. In accordance with Nice guidelines. This amendment therefore, requires clinicians to make a judgement on a potentially hypothetical basis. Amendment 80, tabled by the noble Lady Baroness 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 progress 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 leave lead to ambiguity, including operational issues around which doctors are to assess life expectancy and to what standard. Amendment 44 for a, tabled by the noble Lady Baroness Finlay, seeks to change the bill's eligibility criteria from six months to three months at a later stage in the process, by requiring the panel to be satisfied, a person's death can be expected within three months before granting a certificate of eligibility.
This amendment would create significant workability concerns. Firstly, this amendment is in direct conflict with the eligibility criteria set out in clause one and clause two, which require that a person's death is to be reasonably expected within six months. Secondly, this amendment, by not including a test of reasonable expectation, would require a higher degree of confidence around the prognosis. It is likely to be challenging for a panel to assess this, given its reliance on evidence from the coordinating and independent doctors who will have applied a different six month test.
In addition, given the lack of clinical evidence and guaranteed information on which to base the panel's decision, there would be an increased risk of legal challenge. I now turn to amendments 85, 89 four and 89 six, tabled by the noble Lord, Lord Moylan, amendments 85 and 896 would require the Secretary of State to specify a complete list of illnesses or diseases that fall within the scope of what is terminally ill in regulations. As drafted, these amendments are likely to be unworkable, as it is often a combination of illnesses interacting as opposed to a single one that leads to a terminal diagnosis.
This means it would be extremely difficult, if not impossible, to accurately list all possible combinations of conditions that would lead to a prognosis of less than six months. This amendment leaves it to the Secretary of State to decide what counts as a terminal illness or disease, and the basis on which they are to do so is ambiguous. Amendment 894 would alter the commencement provisions, meaning that the voluntary Assisted Dying Commissioner would need to have substantive functions as well as to have been appointed within 12 months of Royal Assent.
If the bill, once enacted, would not otherwise fully operational within 12 months. This would mean that the Commissioner was being asked to exercise functions with respect to a service that did not yet exist. Finally, amendment 106, in the name of my noble friend Lord Hunt of Kings Heath, would affect those applying for an assisted death where the terminal illness has arisen from medical negligence, malpractice or omission by a healthcare professional institution. The process of obtaining an assisted death would be halted until all investigations, compensation and support had concluded.
This could delay assisted death to otherwise eligible people. As a person's medical history for their illness or disease would need to be assessed for negligence, malpractice, omission, or error before they would be eligible. My Lords, I make no other comment. No comment on the other amendments in this group. However, as noble Lords are aware, the amendments have not had technical drafting support from officials. Therefore, further revision and corresponding amendments may be needed to provide consistent and coherent terminology throughout the bill.
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Lady sits down. May I pursue the point she made about my amendment point she made about my amendment 85? My understanding of the bill as 85? My understanding of the bill as drafted is that one has to have an inevitably progressive illness or inevitably progressive illness or disease. Not that one has to have a disease. Not that one has to have a diagnosis, a six month diagnosis of your prognosis, of your death. Now, the two might be quite separate.
One might have, as the noble Lady said, a combination of circumstances which mean you're likely to die within six months without having a specific disease, identifiable disease. And the noble Baroness seems to be saying that the government's interpretation of this clause is that one doesn't need to have a specific, identifiable terminal illness. One simply needs to have a set of circumstances which together might result in a prognosis of death within six months. Now, if that is the case, and that is the government's view of the meaning of that clause, then as the noble Lady, the Minister seems to imply, that widens to an astonishing extent.
The conditions that might qualify for for this bill. And I would just like to hear the noble Lady, the Minister say, and possibly the noble and learned Lord, Lord Falconer, when he speaks, may want to comment on this, if that really is their interpretation, that it could be any set of circumstances that lead to a six month diagnosis
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illness. Perhaps if I could just briefly refer to look at the actual amendment, as I said in my response, that the workability concerns are about the specification of a list of illnesses or diseases, and I've of illnesses or diseases, and I've already outlined why they would be unworkable because of the fact that it's often that combination of illnesses as well as, I might add, complications of illnesses and that are interacting rather than that single one.
And I referred earlier to why it would be extremely difficult. So I have been looking at the very specifics of the amendment, but to do what it says would create more ambiguity than is amendment. But in reality, my response. Order, order my response is covering our concerns where I don't make a comment. As I say, there are no workability concerns.
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The Minister sits. Before the. Minister sits down as she will
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Minister sits down as she will know the. I have made it clear that know the. I have made it clear that I'm concerned about suffering in the last days of life, and one of the last days of life, and one of the key elements of that is palliative care. And when one talks palliative care. And when one talks about treatment, one of the incentives for death is suffering. Has the Minister got anything to say to the House about the status of palliative care within the National Health Service? And are there any plans afoot, and when are the plans going to be, and when will this particular course of treatment be available to people? Otherwise, many people faced with terminal illness will be very tempted to seek assisted suicide.
And I think that's should be discouraged.
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If I could gently say we are discussing a group of amendments discussing a group of amendments about the definition of terminal illness, to the point on palliative care that I have already placed a care that I have already placed a letter in the library of the house outlining all of the work in respect of palliative care, and I have also made reference to the modern service framework well.
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modern service framework well. Before the Minister sits down, I have to confess to having listened to my noble friend Lord Moylan in response to what the Minister said. To be a little confused, the Minister seemed to be saying in her comments about some of the amendments in this group that the problem with them, by having a list of conditions, was that you could quite often have a terminal diagnosis as a result of a group of conditions or circumstances or illnesses.
Now, my reading is that that isn't what the bill says. The bill seems to say for the purposes of the act, a person is terminally ill. If a they have an an inevitably progressive illness or disease. Not not lots of them. One 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. Now I read the amendment very carefully, which was talking about having a specified list of conditions which, incidentally, coming back to the point Lord Markham made is what the public, or twice as many people support that approach than a terminal illness.
The minister's answer in response to my noble friend Lord Moylan exchange, seemed to be disagreeing with what's actually in the bill. So I have to say, I'm now more confused than I
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was before she got to her feet. Can she clear that up? I'm. I'm sorry. The noble Lord
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I'm. I'm sorry. The noble Lord is confused, and I know that my noble friend, Lord Faulkner will be noble friend, Lord Faulkner will be pleased to assist him with that. Any confusion that there is in the
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Any confusion that there is in the case of this amendment. I suggested. The lady, the Minister, that the
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The lady, the Minister, that the answer to Lord Harper is very simple. A person, an unfortunate person, may have more than one inevitably progressive illness or disease, each of which will lead to their death within six months. And it's a standard principle of statutory interpretation that the
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singular includes the plural. Yeah. May I comment before the noble Lady sits down? I'd hesitate to Lady sits down? I'd hesitate to intervene on the noble Lord Lord Pannick, because that would be quite correctly stopped by the quite correctly stopped by the whips. But what the noble Lord is saying isn't to the point. Of course, one can have. If one has one fatal illness that is going to kill one in some time, in some time kill one in some time, in some time in the future, say a certain form of cancer.
1st May of course have another fatal illness, another illness, say heart disease. I'm not a medical person, which could equally see one off in at some point in the future. And that, of course, would be included in the scope entirely. Understand that that isn't quite what the noble Lady is saying. She is saying that one might have a combination of circumstances, each of which might be non-fatal in itself, but in combination might result in a terminal diagnosis within six months, so that one might, if one is a frail person, have.
And again, I'm not a medical person. Pneumonia combined with certain other conditions such that that combination could be very threatening and might lead to death within six months. But none of those instances would be fatal in themselves. Now that seems to be what the noble Lady the Minister is saying, but that is not, I suggest, what the bill is saying. There has to be an identifiable term.
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I'm not entirely clear what this is. An intervention or or or a is. An intervention or or or a speech, but if it's well, if you let me finish, if it's an intervention, it should be clearer and briefer than that and actually
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and briefer than that and actually have a question. So please come to a point. This is I'm sorry, this is exposed, something that has never exposed, something that has never been mentioned in relation to this bill before. And, and in the whole of our debate on terminal illness, of our debate on terminal illness, it's a matter of crucial importance. And I know the noble noble Lady, the Minister wants to dodge it, but it seems that the government's interpretation of of that, of of that I can't refer to it now.
Clause two one is very different from what it appears to say in its plain language.
11:28
Lord Faulkner of Worcester (Labour)
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Lord Faulkner of Worcester (Labour)
Yeah. >> Your job. >> Sorry. Could I first of all pay
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Sorry. Could I first of all pay tribute to the speeches of the noble Lord Lord Farmer, Lord Shinkwin and Lord Shamash, all of Shinkwin and Lord Shamash, all of which referred to distressing personal circumstances? And I think the House is grateful for people being 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.
May I just pick up four points that came out of the debate? First of all, the words inevitably and progressive plainly limit the words illness or disease. So the illness or disease has to be both inevitable and progressive to deal with the point raised by the noble Lord Lord Moylan. Secondly, to deal with the very important point raised by the Baroness Finlay of Llandaff on the last occasion, frailty is plainly not within that definition. So frailty or 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 condition, and the word condition was removed to deal with that specific point. Secondly, the word the progressive illness or disease which cannot be reversed by treatment, that is, to deal with the sort of example given by the noble Baroness Baroness Coffey and by other noble Lords. There will be conditions, illnesses or diseases such as type one diabetes or HIV Aids, where there is a traditional and accepted treatment which will effectively reverse the effect of the condition, it won't get rid of it completely.
You still may have HIV, you still may be a type one diabetic, but the effect of the condition is reversed and the intention of putting in the word reversed was to deal with those. Thirdly, there will be difficult choices that people have to make when they are ill. For example, if you have a brain tumour which is going to kill you, should you have a very difficult operation? If you have cancer, should you go on taking a palliative chemotherapy, which may be very distressing in a number of respects.
The way it is drafted is this should not be available for people with the type one diabetes situation, but it should not be compelling people to take very, very difficult and distressing decisions about health. I strongly support that approach. Secondly, the requirement is that you have that in consequence of that illness or disease, you can reasonably be expected to live within, expected to die within six months. In terms of the point that the noble Lord Lord Moylan began to career off with a few moments ago, the progressive illness or disease has to be what brings your life to an end.
The point that the noble Baroness Baroness Merron was making seems to me to be clear. Suppose I have cancer. Suppose I am being treated with chemotherapy. Suppose that it is inevitable that I will succumb to a infection within a week, two weeks, six weeks. That is a situation where there is a combination. But my death will be in consequence of the cancer. As far as the period of six months is concerned, could I adopt the approach of Sir Christopher Witty, who gave evidence in the Commons on the public Bill committee? The central view? And that means what's the what's the the central likelihood of a particular person? Survival is usually reasonable, reasonably accurate, that someone is now in a pathway from which there is not going to be a return.
If you are going to choose a period, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder. And there would be some caution. Again, I agree with the accuracy of that and I agree with the realism of it. There has to be a period taken. I believe you can't have a bill that just says terminally ill.
There's got to be a period. What is the right period? The right period that gives people enough of a chance to think about what to do. And it will be different for different people to talk about it with those that they love, to reach a conclusion, a firm and settled conclusion on it. One has got to choose a period. And for the reasons that Sir Christopher gives, I think six months is a reasonable one. But there's nobody in this chamber who doesn't recognise that the closer you are to the end, the more accurate it is going to be.
The statistics that are being produced saying very many of these predictions are inaccurate is obviously right. If one's thinking it's five months or seven months. But what Sir Christopher is saying is broadly, they are often accurate. Could I in the light of that approach, and I think it is a sensible and well thought out approach in the Bill, may I deal with the particular groups of amendments? First of all, the groups, which is amendment 71, 72, 73, 74 and 94 and 204, all of which suggest that you've got to take into account any treatment which might slow or halt or ameliorate the condition.
I understand these amendments to be based on the proposition in considering whether you've got six months or more to live, you should have regard to treatments that could be taken rather than those that have been taken, because plainly there's got to be six months or less to live before you become eligible. For the reasons I gave in my initial remarks, I am not in favour of any of these amendments because they require the dying person to make difficult decisions about what care to take, so I am unfortunately not in favour of those.
The next group of amendments is to try to reduce the six month period, or have a higher standard of proof for the six month period. So, for example, the Baroness Lawler's proposal that it. Can I just finish this, the Baroness Lawlor proposal of 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 got to be approved by two separate doctors and a panel where there is any doubt about the prognosis.
Then each or both of the doctors have got to seek the advice of somebody specialist in the area. That seems to me to be a appropriate degree of safeguarding. I apologise.
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I just wanted to clarify what the noble and learned Lord said, he said. As I understand it, he didn't support these amendments because it would mean that a dying person would have to make difficult decisions. Well, isn't requesting an assisted suicide a difficult
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an assisted suicide a difficult decision that they're already taking? Of course. Of course it's a difficult
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Of course it's a difficult decision, but that's the decision that the person has got to be clear and firm and settled about. I do and firm and settled about. I do not see a parity between the decision that the individual has got to make and making sure that there are appropriately qualified people ensuring that the person has the the disease. They just seem to me to be two different, important but different requirements. The next group of amendments, primarily advanced by the noble Lord, Lord Frost, was the question of whether or not suffering should be an element in the eligibility that terminal illness itself was not sufficient.
We have had this debate on a number of occasions, in particular at the Second Reading, and we've had it in a number of those circumstances where, where a 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 is suffering 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 that they are going through. It is not, in my respectful view, an appropriate or easily applied condition. So for all the reasons that I've given on a number of occasions before, I'm against putting in the question of suffering. The next group of amendments were those advanced this morning, which should which says that if you are the victim of medical negligence, Baroness O'Loan if you are the victim of medical negligence, you should not be entitled to an assisted death.
So 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. I unfortunately can't see the logic of that.
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Sorry Lord Beith, I didn't say with respect that you should be denied an assisted death. I said that assisted death should not be
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that assisted death should not be available until all compensation, etc. matters have been sorted out. I think I've dealt with the
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I think I've dealt with the point. Could I, could I? I've dealt with inevitably progressive? Could I deal with the noble Lord Lord I deal with the noble Lord Lord Moylan list of illnesses? I think again, I do not think that is either practical or sensible. The state would have to identify all the list of illnesses they might miss. Some new illnesses come. Surely it is much better that one has a definition of what the policy aim is, and the policy aim is an inevitably progressive illness or disease, which cannot be reversed by treatment.
Can I 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 this option is to be made available before, the state would have been willing to recognise that that was a fatal condition. And I do think it would be jolly unfair to people that you have to wait for the state to make that decision. Could I go on the the the noble Lord Lord Moylan also asked for a sorry.
Yeah.
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I deliberately didn't intervene on the Minister earlier, but on the noble and learned Lord earlier noble and learned Lord earlier because he, you know, dealt with the point and I thought we'd spent enough time on it. He's now just enough time on it. He's now just made it even more confusing, he seems to be saying, and I just want to make sure I've got this right. The Minister appeared to be saying The Minister appeared to be saying that you could have a set of conditions, none of which were fatal, but the combination of them fatal, but the combination of them was terminal and that would trigger the circumstance.
I said that wasn't what the bill said. The noble Lord Pannick pointed out that if you had a range of conditions, all of which were fatal, that would count. I don't dispute that at all. What the noble and learned Lord seems to be saying is, if someone has a condition which isn't currently recognised as being terminal, you would qualify under this bill. Is that is that did I just hear him correctly or have I
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got that wrong? What I was saying, for example, is it would be the medical is it would be the medical profession could easily recognise, for example, that HIV Aids is fatal for example, that HIV Aids is fatal and they would have recognised that at a particular time and that would be a medical diagnosis. The effect be a medical diagnosis. The effect of the noble Lord Lord Moylan amendment is you can't rely on HIV Aids as a basis for saying that you are you have an inevitably progressive illness or disease which cannot be reversed by treatment, which was the position for a long time, unless the state has put that into a list of regulations.
And what I am saying is that it should be the doctor's determination of whether or not the illness or disease is inevitably progressive, not whether or not there is a Statutory Instrument that says it's one of the list. So I think that is my clear position in relation to that. Could I go on with the questions that have been raised that the, the, the noble Lord Lord Moylan asked, what does the paragraph under two four in fact mean? What it means is the fact that you have a disability or a mental disorder which cannot justify a terminal illness doesn't mean that you can't nevertheless qualify because you do have a terminal illness which satisfies the requirement of section two one.
Could I deal with the question of congenital disorder and amendment 105? If the position is that you are suffering from a. A progressive illness or disease which is likely to end your life within six months, then I think you should be entitled to an assisted death in the form. And my noble friend Lord Shamash referred to such a condition in relation to his cousin. I'm not in favour of of of of excluding a particular category in relation to that.
The noble Lord Lord Shinkwin, for whom everybody in the House has enormous respect, and I also completely I completely accept the proposition. For those of us who are not disabled, we have to listen very, 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 the bill had amendments made to it which ensured that there was a disability group that was going to monitor the performance of the bill.
But I completely accept the proposition that the noble Lord Lord Shinkwin makes, that we have to listen as hard as we can, because it's not part of our experience. And that is a proposition that applies not just to this bill, but to a whole range of bills. Can I go on to two further points? First of all, a number of of of noble Lords have made the point. We're worried about developments in medicine. It's true medicine develops all the time and one needs to keep up with them.
And the doctors making the diagnosis have got to have those in mind. But the fact that there are going to be developments in the future does not prevent the position being that at a particular moment in time, an HIV Aids is the obvious example because those developments haven't yet occurred. Those diseases are going to be fatal, and the fact that something may occur in the future does not prevent the judgement having to be And then finally, amendments 97 and 98 proposed by Baroness Grey-Thompson she she, for understandable reasons, proposes effectively a a shift in the wording to to be much more respectful of disabled people, and I can see no reason why we
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shouldn't make that amendment. He very kindly agreed to address
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He very kindly agreed to address the issue of inadvertent misdiagnosis, and he said that these amendments, led by amendment these amendments, led by amendment 71, was the time to bring that up. It was pointed out at the time by It was pointed out at the time by the noble Lady, Lady Burgess, that 23% of six months diagnosis of death turned out to be wrong. And death turned out to be wrong. And how does that tie in with the noble Lady, the Minister telling us that it had to be an assumption of 80% chance of somebody dying within six months.
So could he address that
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problem before we finish amendment? First of. All, in relation to why I am
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All, in relation to why I am saying six months is safe is for the reasons that Chris Whitty gave, the reasons that Chris Whitty gave, which is six months is generally about right. It might not be right, it might be five months or seven it might be five months or seven months, but it's a proper basis upon which to proceed. The statistical evidence that the noble statistical evidence that the noble Lord, Lord Hamilton is, is relying on is about errors, not of the massive scale that would undermine that proposition.
Secondly, having just checked with the noble Minister, my noble friend, the Minister, she was not saying it had to be 80% right. She was saying what the amendment I think it was the Baroness Lawlor amendment said, and she was saying why it was not an appropriate or workable
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amendment. The noble Lord sits down. Can I
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The noble Lord sits down. Can I understand him for mentioning the need, the importance of listening? need, the importance of listening? And I also thanked him in dismissing every single amendment that the Lordships had considered. that the Lordships had considered. He has reminded the House of extent to which he is listening to. I asked 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. And can I finally say I don't suffer from my condition. I live with it despite obstacles I
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encounter. I suffer from prejudice. Yes, I.
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Yes, I. Apologise unreservedly for saying that the noble Lord Lord Shinkwin suffers from a condition. Shinkwin suffers from a condition. I completely accept the way that he put it. And could I also sympathise put it. And could I also sympathise with him and accept that he suffers from prejudice on a regular basis in relation to it? That is in relation to it? That is obviously been a fate that he has suffered, and I have sympathy for, for him in that respect.
In terms of the question of filibuster, my issue in relation to the way that the Lords have been dealing with this is that we are now on the ninth day of this, and we've got to clause second, clause two. My experience of this House is that it is able to focus on the things that let me finish, that we focus on the things that matter and we should not have taken nine days to get to clause two.
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Sorry. Could I first of all pay tribute to the speeches of the noble Lord Lord Farmer, Lord Shinkwin and Lord Shamash, all of Shinkwin and Lord Shamash, all of which referred to distressing personal circumstances? And I think the House is grateful for people being 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.
May I just pick up four points that came out of the debate? First of all, the words inevitably and progressive plainly limit the words illness or disease. So the illness or disease has to be both inevitable and progressive to deal with the point raised by the noble Lord Lord Moylan. Secondly, to deal with the very important point raised by the Baroness Finlay of Llandaff on the last occasion, frailty is plainly not within that definition. So frailty or 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 condition, and the word condition was removed to deal with that specific point. Secondly, the word the progressive illness or disease which cannot be reversed by treatment, that is, to deal with the sort of example given by the noble Baroness Baroness Coffey and by other noble Lords. There will be conditions, illnesses or diseases such as type one diabetes or HIV Aids, where there is a traditional and accepted treatment which will effectively reverse the effect of the condition, it won't get rid of it completely.
You still may have HIV, you still may be a type one diabetic, but the effect of the condition is reversed and the intention of putting in the word reversed was to deal with those. Thirdly, there will be difficult choices that people have to make when they are ill. For example, if you have a brain tumour which is going to kill you, should you have a very difficult operation? If you have cancer, should you go on taking a palliative chemotherapy, which may be very distressing in a number of respects.
The way it is drafted is this should not be available for people with the type one diabetes situation, but it should not be compelling people to take very, very difficult and distressing decisions about health. I strongly support that approach. Secondly, the requirement is that you have that in consequence of that illness or disease, you can reasonably be expected to live within, expected to die within six months. In terms of the point that the noble Lord Lord Moylan began to career off with a few moments ago, the progressive illness or disease has to be what brings your life to an end.
The point that the noble Baroness Baroness Merron was making seems to me to be clear. Suppose I have cancer. Suppose I am being treated with chemotherapy. Suppose that it is inevitable that I will succumb to a infection within a week, two weeks, six weeks. That is a situation where there is a combination. But my death will be in consequence of the cancer. As far as the period of six months is concerned, could I adopt the approach of Sir Christopher Witty, who gave evidence in the Commons on the public Bill committee? The central view? And that means what's the what's the the central likelihood of a particular person? Survival is usually reasonable, reasonably accurate, that someone is now in a pathway from which there is not going to be a return.
If you are going to choose a period, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder. And there would be some caution. Again, I agree with the accuracy of that and I agree with the realism of it. There has to be a period taken. I believe you can't have a bill that just says terminally ill.
There's got to be a period. What is the right period? The right period that gives people enough of a chance to think about what to do. And it will be different for different people to talk about it with those that they love, to reach a conclusion, a firm and settled conclusion on it. One has got to choose a period. And for the reasons that Sir Christopher gives, I think six months is a reasonable one. But there's nobody in this chamber who doesn't recognise that the closer you are to the end, the more accurate it is going to be.
The statistics that are being produced saying very many of these predictions are inaccurate is obviously right. If one's thinking it's five months or seven months. But what Sir Christopher is saying is broadly, they are often accurate. Could I in the light of that approach, and I think it is a sensible and well thought out approach in the Bill, may I deal with the particular groups of amendments? First of all, the groups, which is amendment 71, 72, 73, 74 and 94 and 204, all of which suggest that you've got to take into account any treatment which might slow or halt or ameliorate the condition.
I understand these amendments to be based on the proposition in considering whether you've got six months or more to live, you should have regard to treatments that could be taken rather than those that have been taken, because plainly there's got to be six months or less to live before you become eligible. For the reasons I gave in my initial remarks, I am not in favour of any of these amendments because they require the dying person to make difficult decisions about what care to take, so I am unfortunately not in favour of those.
The next group of amendments is to try to reduce the six month period, or have a higher standard of proof for the six month period. So, for example, the Baroness Lawler's proposal that it. Can I just finish this, the Baroness Lawlor proposal of 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 got to be approved by two separate doctors and a panel where there is any doubt about the prognosis.
Then each or both of the doctors have got to seek the advice of somebody specialist in the area. That seems to me to be a appropriate degree of safeguarding. I apologise.
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I just wanted to clarify what the noble and learned Lord said, he said. As I understand it, he didn't support these amendments because it would mean that a dying person would have to make difficult decisions. Well, isn't requesting an assisted suicide a difficult
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an assisted suicide a difficult decision that they're already taking? Of course. Of course it's a difficult
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Of course it's a difficult decision, but that's the decision that the person has got to be clear and firm and settled about. I do and firm and settled about. I do not see a parity between the decision that the individual has got to make and making sure that there are appropriately qualified people ensuring that the person has the the disease. They just seem to me to be two different, important but different requirements. The next group of amendments, primarily advanced by the noble Lord, Lord Frost, was the question of whether or not suffering should be an element in the eligibility that terminal illness itself was not sufficient.
We have had this debate on a number of occasions, in particular at the Second Reading, and we've had it in a number of those circumstances where, where a 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 is suffering 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 that they are going through. It is not, in my respectful view, an appropriate or easily applied condition. So for all the reasons that I've given on a number of occasions before, I'm against putting in the question of suffering. The next group of amendments were those advanced this morning, which should which says that if you are the victim of medical negligence, Baroness O'Loan if you are the victim of medical negligence, you should not be entitled to an assisted death.
So 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. I unfortunately can't see the logic of that.
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Sorry Lord Beith, I didn't say with respect that you should be denied an assisted death. I said that assisted death should not be
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that assisted death should not be available until all compensation, etc. matters have been sorted out. I think I've dealt with the
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I think I've dealt with the point. Could I, could I? I've dealt with inevitably progressive? Could I deal with the noble Lord Lord I deal with the noble Lord Lord Moylan list of illnesses? I think again, I do not think that is either practical or sensible. The state would have to identify all the list of illnesses they might miss. Some new illnesses come. Surely it is much better that one has a definition of what the policy aim is, and the policy aim is an inevitably progressive illness or disease, which cannot be reversed by treatment.
Can I 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 this option is to be made available before, the state would have been willing to recognise that that was a fatal condition. And I do think it would be jolly unfair to people that you have to wait for the state to make that decision. Could I go on the the the noble Lord Lord Moylan also asked for a sorry.
Yeah.
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I deliberately didn't intervene on the Minister earlier, but on the noble and learned Lord earlier noble and learned Lord earlier because he, you know, dealt with the point and I thought we'd spent enough time on it. He's now just enough time on it. He's now just made it even more confusing, he seems to be saying, and I just want to make sure I've got this right. The Minister appeared to be saying The Minister appeared to be saying that you could have a set of conditions, none of which were fatal, but the combination of them fatal, but the combination of them was terminal and that would trigger the circumstance.
I said that wasn't what the bill said. The noble Lord Pannick pointed out that if you had a range of conditions, all of which were fatal, that would count. I don't dispute that at all. What the noble and learned Lord seems to be saying is, if someone has a condition which isn't currently recognised as being terminal, you would qualify under this bill. Is that is that did I just hear him correctly or have I
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got that wrong? What I was saying, for example, is it would be the medical is it would be the medical profession could easily recognise, for example, that HIV Aids is fatal for example, that HIV Aids is fatal and they would have recognised that at a particular time and that would be a medical diagnosis. The effect be a medical diagnosis. The effect of the noble Lord Lord Moylan amendment is you can't rely on HIV Aids as a basis for saying that you are you have an inevitably progressive illness or disease which cannot be reversed by treatment, which was the position for a long time, unless the state has put that into a list of regulations.
And what I am saying is that it should be the doctor's determination of whether or not the illness or disease is inevitably progressive, not whether or not there is a Statutory Instrument that says it's one of the list. So I think that is my clear position in relation to that. Could I go on with the questions that have been raised that the, the, the noble Lord Lord Moylan asked, what does the paragraph under two four in fact mean? What it means is the fact that you have a disability or a mental disorder which cannot justify a terminal illness doesn't mean that you can't nevertheless qualify because you do have a terminal illness which satisfies the requirement of section two one.
Could I deal with the question of congenital disorder and amendment 105? If the position is that you are suffering from a. A progressive illness or disease which is likely to end your life within six months, then I think you should be entitled to an assisted death in the form. And my noble friend Lord Shamash referred to such a condition in relation to his cousin. I'm not in favour of of of of excluding a particular category in relation to that.
The noble Lord Lord Shinkwin, for whom everybody in the House has enormous respect, and I also completely I completely accept the proposition. For those of us who are not disabled, we have to listen very, 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 the bill had amendments made to it which ensured that there was a disability group that was going to monitor the performance of the bill.
But I completely accept the proposition that the noble Lord Lord Shinkwin makes, that we have to listen as hard as we can, because it's not part of our experience. And that is a proposition that applies not just to this bill, but to a whole range of bills. Can I go on to two further points? First of all, a number of of of noble Lords have made the point. We're worried about developments in medicine. It's true medicine develops all the time and one needs to keep up with them.
And the doctors making the diagnosis have got to have those in mind. But the fact that there are going to be developments in the future does not prevent the position being that at a particular moment in time, an HIV Aids is the obvious example because those developments haven't yet occurred. Those diseases are going to be fatal, and the fact that something may occur in the future does not prevent the judgement having to be And then finally, amendments 97 and 98 proposed by Baroness Grey-Thompson she she, for understandable reasons, proposes effectively a a shift in the wording to to be much more respectful of disabled people, and I can see no reason why we
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shouldn't make that amendment. He very kindly agreed to address
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He very kindly agreed to address the issue of inadvertent misdiagnosis, and he said that these amendments, led by amendment these amendments, led by amendment 71, was the time to bring that up. It was pointed out at the time by It was pointed out at the time by the noble Lady, Lady Burgess, that 23% of six months diagnosis of death turned out to be wrong. And death turned out to be wrong. And how does that tie in with the noble Lady, the Minister telling us that it had to be an assumption of 80% chance of somebody dying within six months.
So could he address that
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problem before we finish amendment? First of. All, in relation to why I am
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All, in relation to why I am saying six months is safe is for the reasons that Chris Whitty gave, the reasons that Chris Whitty gave, which is six months is generally about right. It might not be right, it might be five months or seven it might be five months or seven months, but it's a proper basis upon which to proceed. The statistical evidence that the noble statistical evidence that the noble Lord, Lord Hamilton is, is relying on is about errors, not of the massive scale that would undermine that proposition.
Secondly, having just checked with the noble Minister, my noble friend, the Minister, she was not saying it had to be 80% right. She was saying what the amendment I think it was the Baroness Lawlor amendment said, and she was saying why it was not an appropriate or workable
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amendment. The noble Lord sits down. Can I
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The noble Lord sits down. Can I understand him for mentioning the need, the importance of listening? need, the importance of listening? And I also thanked him in dismissing every single amendment that the Lordships had considered. that the Lordships had considered. He has reminded the House of extent to which he is listening to. I asked 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. And can I finally say I don't suffer from my condition. I live with it despite obstacles I
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encounter. I suffer from prejudice. Yes, I.
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Yes, I. Apologise unreservedly for saying that the noble Lord Lord Shinkwin suffers from a condition. Shinkwin suffers from a condition. I completely accept the way that he put it. And could I also sympathise put it. And could I also sympathise with him and accept that he suffers from prejudice on a regular basis in relation to it? That is in relation to it? That is obviously been a fate that he has suffered, and I have sympathy for, for him in that respect.
In terms of the question of filibuster, my issue in relation to the way that the Lords have been dealing with this is that we are now on the ninth day of this, and we've got to clause second, clause two. My experience of this House is that it is able to focus on the things that let me finish, that we focus on the things that matter and we should not have taken nine days to get to clause two.
11:49
Lord Falconer of Thoroton (Labour)
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Lord Falconer of Thoroton (Labour)
Before the noble Lord sits down. He keeps saying that we've only got He keeps saying that we've only got to clause one or clause two, but the reality is that over these nine days, we have discussed multiple clauses and schedules of this bill, and I think it's misleading to suggest we've only done clause one and a bit of clause two. That is the position. Then 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 the
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committee day in the next day or two. Before the noble Lord sits down.
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Before the noble Lord sits down. The House does have its procedures, and the House does generally stay by those procedures. There is by those procedures. There is nothing going on in the course of this bill, which is filibustering. It is analysis of the defects and the flaws in this dangerous bill.
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My Lords, after a very long and extensive debate, first of all, I'd like to thank everybody who contributed, particularly those who contributed with their own personal stories and the way that those individual experiences have affected people. I would like to affected people. I would like to remind the House, though, that we are legislating for the whole country, not for individual stories, country, not for individual stories, and we need to look at eligibility carefully. Be frank, I think the response from the noble and learned Lord is deeply disappointing because these amendments were tabled in order to try to make the boundaries of this bill safer and to avoid opening the door to Wide Creek.
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. And indeed, I am delighted to be sitting next to my noble friend, the noble Lord Carter of Haslemere, who illustrates that beautifully, as does the noble Lady Baroness Campbell of Surbiton, who, I would remind the house was deemed to be terminally ill many decades ago. If I can try briefly to summarise this, frailty is not included, apparently, but the geriatricians will say that actually frailty has a six month prognosis, as does cancer.
I would not want frailty included at all. I am glad that that has been ruled out. But of course, 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. And as was said, knowledge is power. The information that people need is that their diagnosis is accurate and it is very disappointing to find that the wealth of research evidence that there has been systematic reviews, observational studies and so on have shown that at six months the margin of error is huge.
I would like to just comment very briefly on the no. My noble friend Baroness Freemans way of communicating risk, where she's absolutely right that you can say to people, well, 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? And that is the unknown. And their family will then come and push often, not always, but push further to know which group they're in.
It is important in communicating information that we are honest, and we do not pretend that there is some clinical truth. Around six months. There is also, sadly, bias in the mind of doctors, and I was concerned to hear that the. As we said, I if I heard right by the noble Lady, the Minister, that there would be a different six month test applied by two different doctors, the coordinating and the independent doctor. But I will go back to Hansard to look at that.
I think the noble Lord, Lord Wolfson of Tredegar, pointed out the legal uncertainty around the phrase reasonably unexpected, reasonably expected, and I would caution that we should not be ignoring that. It's disappointing that there is still a view that somehow six months is some kind of absolute, and ignores the fact that there are patients who are thought to die not only in six months, but possibly much shorter, and who are alive many years later. This is not about five months or seven months.
This is about years, five years, ten years, 15 years. I will not go into individual cases now, but I can have a catalogue of them. So the six month is not predictable. And the attempt in these amendments was to try 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, which is to end their life. We have been trying to look at the problems in the bill and improve the bill and rejection of all of these amendments out of hand, without any invitation to look again at the wording or try to tighten it, I think is disappointing.
But with that I beg leave to withdraw the amendment at this stage.
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Is it your Lordship's pleasure that amendment 71 be withdrawn? Amendment is by leave withdrawn. Amendment 72 Baroness Lawlor not Amendment 72 Baroness Lawlor not moved 73. Baroness Coffey not moved. Amendment 74 Lord Taylor of Amendment 74 Lord Taylor of Holbeach not moved. Amendment 75 Baroness Finlay of Llandaff not Baroness Finlay of Llandaff not moved. Amendment 76 Lord Garnier not moved. Amendment 77 Baroness Finlay of Llandaff not moved. Amendment 78 Lord Harper not moved.
Amendment 79 Baroness Finlay of Llandaff not moved. Amendment 80 Baroness Lawlor not moved. Amendment 81 Lord Carlile of Berriew not moved. Amendment 82 Lord Polak not moved. Amendment 83 a Lord Polak not moved. Amendment 83 B Lord Wolfson of Tredegar not moved. Amendment 84 Lord Frost not moved. Amendment 85 Lord Moylan not moved. Amendment 86 Lord Carlile of Berriew not moved. Amendment 87 Lord Faulkner, authority.
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My Lords, this is an important amendment designed to ensure that amendment designed to ensure that persons with anorexia cannot, by not eating, put themselves into a not eating, put themselves into a position where they qualify for an assisted death. I am delighted to assisted death. I am delighted to say that I have the support of the Lord, the noble Lord Lord Carlile, the noble Baroness Parminter, who the noble Baroness Parminter, who has played a very significant part in bringing this to our attention and ensuring we get the right answer.
And the noble Baroness Baroness Hollins, who I think is in a place. The matter was raised in the Commons and an amendment was agreed at report, because everybody agreed that people with anorexia should not be able to get themselves into eligibility. And clause two two was put in which, as a person who would not otherwise meet the requirements of subsection one shall not be considered to meet those requirements solely as a result of voluntarily stopping eating or drinking.
That gives rise to two particularly significant problems. First of all, the word solely if it's only by reason of not eating. Should you? Don't you fall out. But it might be partly because of it and partly for other things. And that would make anorexia a means of getting you to an assisted death. And the second was that there was doubt about the word voluntary. Is it voluntary? If it is truly a medical condition? The amendment I and those supporting me are proposing is intended to deal with both of those issues.
If one looks at the wording of the amendment, it says where a person does not eat or drink or limits their eating or drinking because of a mental disorder, and that that they're not eating or drinking or limited eating or drinking causes them to have an illness or disease. The person is not to be regarded for the purpose of the act as terminally ill. So it does not have to be the sole reason. I believe, that that is workable, and I believe that it does what I think everybody in this chamber would want, which is to exclude people with anorexia from making themselves eligible.
Since that amendment was put down, an amendment was put down in the name of my noble and learned friend, the Baroness Falkner, the Baroness Scotland of Asthal, which is also supported by the Baroness Berger, which says to put in the word before. In my amendment, the words are because of a mental disorder, but in the words either voluntarily or because of a mental disorder. That would cover every single possibility. So I am keen to accept the amendment to my amendment put down by the noble Baroness Stowell and the noble Baroness Berger.
I would invite the House to agree this amendment today. I will not put it to the vote, but I think it is important that if the House thinks this is the right course to take, then in accordance with what is an acceptable practice at committee, I would invite the House to agree on the nod that I go in
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today. My Lords, I beg to move. Amendment proposed. Clause two.
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Amendment proposed. Clause two. Page two. Line seven. Leave out subsection two and insert the words as printed on the Marshalled List. as printed on the Marshalled List. And now remember 87 A as an amendment to 87. debate.
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debate. On behalf of my noble friend Baroness Scotland, who made clear at the end of last Friday that she could not attend today's committee.
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committee day in the next day or two. Before the noble Lord sits down.
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Before the noble Lord sits down. The House does have its procedures, and the House does generally stay by those procedures. There is by those procedures. There is nothing going on in the course of this bill, which is filibustering. It is analysis of the defects and the flaws in this dangerous bill.
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My Lords, after a very long and extensive debate, first of all, I'd like to thank everybody who contributed, particularly those who contributed with their own personal stories and the way that those individual experiences have affected people. I would like to affected people. I would like to remind the House, though, that we are legislating for the whole country, not for individual stories, country, not for individual stories, and we need to look at eligibility carefully. Be frank, I think the response from the noble and learned Lord is deeply disappointing because these amendments were tabled in order to try to make the boundaries of this bill safer and to avoid opening the door to Wide Creek.
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. And indeed, I am delighted to be sitting next to my noble friend, the noble Lord Carter of Haslemere, who illustrates that beautifully, as does the noble Lady Baroness Campbell of Surbiton, who, I would remind the house was deemed to be terminally ill many decades ago. If I can try briefly to summarise this, frailty is not included, apparently, but the geriatricians will say that actually frailty has a six month prognosis, as does cancer.
I would not want frailty included at all. I am glad that that has been ruled out. But of course, 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. And as was said, knowledge is power. The information that people need is that their diagnosis is accurate and it is very disappointing to find that the wealth of research evidence that there has been systematic reviews, observational studies and so on have shown that at six months the margin of error is huge.
I would like to just comment very briefly on the no. My noble friend Baroness Freemans way of communicating risk, where she's absolutely right that you can say to people, well, 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? And that is the unknown. And their family will then come and push often, not always, but push further to know which group they're in.
It is important in communicating information that we are honest, and we do not pretend that there is some clinical truth. Around six months. There is also, sadly, bias in the mind of doctors, and I was concerned to hear that the. As we said, I if I heard right by the noble Lady, the Minister, that there would be a different six month test applied by two different doctors, the coordinating and the independent doctor. But I will go back to Hansard to look at that.
I think the noble Lord, Lord Wolfson of Tredegar, pointed out the legal uncertainty around the phrase reasonably unexpected, reasonably expected, and I would caution that we should not be ignoring that. It's disappointing that there is still a view that somehow six months is some kind of absolute, and ignores the fact that there are patients who are thought to die not only in six months, but possibly much shorter, and who are alive many years later. This is not about five months or seven months.
This is about years, five years, ten years, 15 years. I will not go into individual cases now, but I can have a catalogue of them. So the six month is not predictable. And the attempt in these amendments was to try 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, which is to end their life. We have been trying to look at the problems in the bill and improve the bill and rejection of all of these amendments out of hand, without any invitation to look again at the wording or try to tighten it, I think is disappointing.
But with that I beg leave to withdraw the amendment at this stage.
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Is it your Lordship's pleasure that amendment 71 be withdrawn? Amendment is by leave withdrawn. Amendment 72 Baroness Lawlor not Amendment 72 Baroness Lawlor not moved 73. Baroness Coffey not moved. Amendment 74 Lord Taylor of Amendment 74 Lord Taylor of Holbeach not moved. Amendment 75 Baroness Finlay of Llandaff not Baroness Finlay of Llandaff not moved. Amendment 76 Lord Garnier not moved. Amendment 77 Baroness Finlay of Llandaff not moved. Amendment 78 Lord Harper not moved.
Amendment 79 Baroness Finlay of Llandaff not moved. Amendment 80 Baroness Lawlor not moved. Amendment 81 Lord Carlile of Berriew not moved. Amendment 82 Lord Polak not moved. Amendment 83 a Lord Polak not moved. Amendment 83 B Lord Wolfson of Tredegar not moved. Amendment 84 Lord Frost not moved. Amendment 85 Lord Moylan not moved. Amendment 86 Lord Carlile of Berriew not moved. Amendment 87 Lord Faulkner, authority.
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My Lords, this is an important amendment designed to ensure that amendment designed to ensure that persons with anorexia cannot, by not eating, put themselves into a not eating, put themselves into a position where they qualify for an assisted death. I am delighted to assisted death. I am delighted to say that I have the support of the Lord, the noble Lord Lord Carlile, the noble Baroness Parminter, who the noble Baroness Parminter, who has played a very significant part in bringing this to our attention and ensuring we get the right answer.
And the noble Baroness Baroness Hollins, who I think is in a place. The matter was raised in the Commons and an amendment was agreed at report, because everybody agreed that people with anorexia should not be able to get themselves into eligibility. And clause two two was put in which, as a person who would not otherwise meet the requirements of subsection one shall not be considered to meet those requirements solely as a result of voluntarily stopping eating or drinking.
That gives rise to two particularly significant problems. First of all, the word solely if it's only by reason of not eating. Should you? Don't you fall out. But it might be partly because of it and partly for other things. And that would make anorexia a means of getting you to an assisted death. And the second was that there was doubt about the word voluntary. Is it voluntary? If it is truly a medical condition? The amendment I and those supporting me are proposing is intended to deal with both of those issues.
If one looks at the wording of the amendment, it says where a person does not eat or drink or limits their eating or drinking because of a mental disorder, and that that they're not eating or drinking or limited eating or drinking causes them to have an illness or disease. The person is not to be regarded for the purpose of the act as terminally ill. So it does not have to be the sole reason. I believe, that that is workable, and I believe that it does what I think everybody in this chamber would want, which is to exclude people with anorexia from making themselves eligible.
Since that amendment was put down, an amendment was put down in the name of my noble and learned friend, the Baroness Falkner, the Baroness Scotland of Asthal, which is also supported by the Baroness Berger, which says to put in the word before. In my amendment, the words are because of a mental disorder, but in the words either voluntarily or because of a mental disorder. That would cover every single possibility. So I am keen to accept the amendment to my amendment put down by the noble Baroness Stowell and the noble Baroness Berger.
I would invite the House to agree this amendment today. I will not put it to the vote, but I think it is important that if the House thinks this is the right course to take, then in accordance with what is an acceptable practice at committee, I would invite the House to agree on the nod that I go in
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today. My Lords, I beg to move. Amendment proposed. Clause two.
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Amendment proposed. Clause two. Page two. Line seven. Leave out subsection two and insert the words as printed on the Marshalled List. as printed on the Marshalled List. And now remember 87 A as an amendment to 87. debate.
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debate. On behalf of my noble friend Baroness Scotland, who made clear at the end of last Friday that she could not attend today's committee.
12:00
Baroness Keeley (Labour)
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Baroness Keeley (Labour)
could not attend today's committee. And it's it's worth I very much appreciate what my noble and learned friend Lord Rogan has just said, but it's worth my explaining a little bit about amendment 87 and making another couple of points. The purpose of amendment 87 is simple to retain the safeguard that prevents a person becoming eligible for assisted dying by choosing to stop or limit their drinking. And we heard that what happened around that 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 it's worth still making. Amendment 87, as drafted, inadvertently dismantles another essential safeguard ensuring people who are not terminally ill cannot make themselves terminally ill by deliberately ceasing food and fluids. This issue is entirely distinct from anorexia, and the Other place added clause two two specifically to prevent it. Amendment 87 restores that protection so that amendment 87 safeguards both groups, those whose mental disorder limits eating and drinking, and those who might deliberately restrict intake to fall within the bill.
And that's not a theoretical concern. The case of Cody Sontag in Oregon shows us that we we what we fear may happen is already happening in one of the jurisdictions 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, now the American Academy of Aid in Dying Medicine itself acknowledges this loophole as a legal grey zone. I'm sure my Lord Alli would agree that there must be no grey zones when dealing with irreversible decisions about life and death. But even with amendment 87, amendment 87 does 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 one diabetes with an eating disorder who manipulate insulin, or people with bulimia who binge and purge both behaviours can be life threatening, particularly where treatment is refused or unavailable despite being treatable conditions. Under clause two one. Such individuals could still meet the definition of terminal illness throughout this bill's passage. As the sponsor, I. Noble and learned friend Lord Gardiner acknowledged concerns about protecting people with eating disorders have repeatedly resurfaced. Concerns were raised repeatedly in the other place at oral evidence in line by line scrutiny at Report stage and Third Reading.
And here we're raising them again. It's abundantly clear we have not yet got this right, and the comments about accepting amendment 87 are very welcome, because this bill does not yet protect this vulnerable and growing group of people, illustrating how easily complex conditions can fall outside intended protections for this reason. Additionally, 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 a 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 years. We must not repeat these mistakes here. I also support amendment 92. In the name of my noble friend Baroness Debbonaire. It 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, and refusal of treatment would become a straightforward route to eligibility under the bill.
As drafted, the amendment from the noble Baroness, Lady Parmenter closes this loophole for eating disorders. Amendment 92 extends protection to all treatable conditions. We should adopt both. This is fundamentally a matter of sequencing. It is entirely different for someone who is terminally ill to choose an assisted death from someone who makes themselves terminally ill by refusing treatment due to suicidal feelings. The bill was never intended to allow the latter. My Lords, our purpose today to make this bill safer.
Adopting all these amendments is essential to doing so. They can be no grey areas in the matters of life and death and the
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protection of vulnerable people. Well done. My Lord.
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My Lord. Amendment 89, please. And this
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Amendment 89, please. And this group, I think everybody in the House is more or less on the same page here in what we're trying to page here in what we're trying to achieve. This particular amendment
On that point, there is welcome consensus, but there are some points that it's worth still making. Amendment 87, as drafted, inadvertently dismantles another essential safeguard ensuring people who are not terminally ill cannot make themselves terminally ill by deliberately ceasing food and fluids. This issue is entirely distinct from anorexia, and the Other place added clause two two specifically to prevent it. Amendment 87 restores that protection so that amendment 87 safeguards both groups, those whose mental disorder limits eating and drinking, and those who might deliberately restrict intake to fall within the bill.
And that's not a theoretical concern. The case of Cody Sontag in Oregon shows us that we we what we fear may happen is already happening in one of the jurisdictions 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, now the American Academy of Aid in Dying Medicine itself acknowledges this loophole as a legal grey zone. I'm sure my Lord Alli would agree that there must be no grey zones when dealing with irreversible decisions about life and death. But even with amendment 87, amendment 87 does 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 one diabetes with an eating disorder who manipulate insulin, or people with bulimia who binge and purge both behaviours can be life threatening, particularly where treatment is refused or unavailable despite being treatable conditions. Under clause two one. Such individuals could still meet the definition of terminal illness throughout this bill's passage. As the sponsor, I. Noble and learned friend Lord Gardiner acknowledged concerns about protecting people with eating disorders have repeatedly resurfaced. Concerns were raised repeatedly in the other place at oral evidence in line by line scrutiny at Report stage and Third Reading.
And here we're raising them again. It's abundantly clear we have not yet got this right, and the comments about accepting amendment 87 are very welcome, because this bill does not yet protect this vulnerable and growing group of people, illustrating how easily complex conditions can fall outside intended protections for this reason. Additionally, 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 a 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 years. We must not repeat these mistakes here. I also support amendment 92. In the name of my noble friend Baroness Debbonaire. It 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, and refusal of treatment would become a straightforward route to eligibility under the bill.
As drafted, the amendment from the noble Baroness, Lady Parmenter closes this loophole for eating disorders. Amendment 92 extends protection to all treatable conditions. We should adopt both. This is fundamentally a matter of sequencing. It is entirely different for someone who is terminally ill to choose an assisted death from someone who makes themselves terminally ill by refusing treatment due to suicidal feelings. The bill was never intended to allow the latter. My Lords, our purpose today to make this bill safer.
Adopting all these amendments is essential to doing so. They can be no grey areas in the matters of life and death and the
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protection of vulnerable people. Well done. My Lord.
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My Lord. Amendment 89, please. And this
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Amendment 89, please. And this group, I think everybody in the House is more or less on the same page here in what we're trying to page here in what we're trying to achieve. This particular amendment
12:05
Lord Empey (Ulster Unionist Party)
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Lord Empey (Ulster Unionist Party)
adds to part two of clause two, withdrawing or withdrawing medication, hydration or life sustaining devices. Now, this is something that perhaps has been forgotten about, but people sometimes have to rely on ventilators and other forms of equipment in order to sustain their lives. So I don't think it's a big leap forward to add that into the legislation. It's a fairly simple, straightforward, and I believe amendment 89 and amending part two of clause two makes seems to make sense.
Again, I repeat it. It's about adding at the end of the clause or withdrawing medication, hydration or life sustaining devices. I think it's simple, straightforward. I can't think of any reason why the noble and Lord should not adopt this amendment as a sensible way forward, and I think it indicates, actually, again, and we've had this conversation a number of times that we have to bear in mind, there's still significant weaknesses, and we have to make this bill safe.
I just gently remind the House that when we last discussed this subject back in 2021, the question about the sort of hostile reaction around to what we're trying to do here, I gently remind people that in this assisted dying bill that the noble Baroness Meacher brought forward in on the 22nd of October, 2021, when we had the Second Reading, the private member's bill that she brought forward had ten pages and 13 clauses. This bill has 51 pages and 59 clauses.
So I think people have to understand that this is a massive private member's bill, and it is not normal in terms of how we deal with private members businesses much, much bigger. But I would hope with that the noble and learned Lord would have no difficulty in accepting amendment 89.
Again, I repeat it. It's about adding at the end of the clause or withdrawing medication, hydration or life sustaining devices. I think it's simple, straightforward. I can't think of any reason why the noble and Lord should not adopt this amendment as a sensible way forward, and I think it indicates, actually, again, and we've had this conversation a number of times that we have to bear in mind, there's still significant weaknesses, and we have to make this bill safe.
I just gently remind the House that when we last discussed this subject back in 2021, the question about the sort of hostile reaction around to what we're trying to do here, I gently remind people that in this assisted dying bill that the noble Baroness Meacher brought forward in on the 22nd of October, 2021, when we had the Second Reading, the private member's bill that she brought forward had ten pages and 13 clauses. This bill has 51 pages and 59 clauses.
So I think people have to understand that this is a massive private member's bill, and it is not normal in terms of how we deal with private members businesses much, much bigger. But I would hope with that the noble and learned Lord would have no difficulty in accepting amendment 89.
12:08
Baroness Fox of Buckley (Non-affiliated)
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Baroness Fox of Buckley (Non-affiliated)
I'm rising. >> Move amendment 103 in my name, and I'd like to thank the noble Lady Baroness Hollins for adding her name. This is a modest her name. This is a modest amendment, simply seeking to ensure that a person is not categorised as terminally ill if they've refused life saving treatment influenced by mental disorder. And I think the noble Lady Baroness Keeley has said perceptively, some of the issues that are concerning me and why I tabled this amendment, that is, we're talking about tackling any individual who effectively, voluntarily brings themselves within the definition of terminal illness as defined in the bill.
Now, for supporters of the bill, and I think we heard this in the previous group, the six month prognosis is is presented very often as clear cut. We all know what we mean by terminal illness. And actually usually in public discussions, the examples given are cancer. And again it seems fairly clear cut. But I think we did hear in the previous group that life and death and diseases are rather more complicated. And I thought especially that the noble Lord Lord Moylan raised some very thought provoking, thought provoking issues in that.
So I want to make it a bit more concrete. What terminal illness would mean? In the examples that I talk about, I've noted that the and I've noted that the noble Lady Baroness Coffey actually started this theme in the previous group, and I was very affected by the moving speech by the noble Lord Lord Farmer that also pertains to this. What if someone who is suffering a serious depressive episode, perhaps related to a debilitating physical illness that is difficult but nonetheless treatable? What could they what would happen if, perhaps in a temporary period of despair, they refuse treatments such as dialysis or HIV antivirals, therefore potentially leading them to a situation of terminal ill prognosis? Would they, I ask the noble and learned Lord, be eligible for assisted death in that instance? Or take a suicidal person, perhaps a prisoner suffering mental distress, who is attempting to take his own life several times before.
But suicide prevention policies have saved him. And I'm thinking here actually, particularly of prisoners that have long campaigned for who that have long campaigned for who are on IPP sentences and tragically, suicide figures amongst that group of prisoners is very high and suicidal ideation is a real factor for those prisoners. So our imagined prisoner is not just mentally disturbed, but as it happens, is also physically dependent on insulin for diabetes and needs to take that to remain alive.
If that person refuses to take that treatment and become seriously ill, bringing upon himself the inevitability of having a progressive disease and becoming terminal, would he be eligible for assisted death under this bill? Because it seems to contradict the slogan of many of the bill's supporters, which we frequently hear people saying they're dying. Anyway, as it happens, it's a phrase I find particularly chilling, but in this instance, they aren't dying anyway. They would be dying in a self-induced way.
So how will the idea of terminal illness in those instances be weighed up? But to note, take our IPP prisoner refusing to treat to take the treatment and the insulin, perhaps even refusing to eat or drink, that, of course, could lead to an inevitable assisted death because he would meet the physical criteria of terminal illness. But actually, the root cause is not inevitably progressive. Imagine, for example, and I like to imagine this, that we as parliamentarians, along with campaigners, are successful in ensuring that IPP prisoners are freed from the hopelessness of an abolished sentence.
Because we've been successful. Therefore, that awful, abolished prison sentence which psychiatrists uniformly and consistently say is a major factor in making people suffer mental illness in prison. If that IPP was ended, then that prisoner could resume their medical treatment because their mental ill health would have changed, because the social circumstances would have changed, and therefore they could resume starting their treatment, start engaging again, feel that they have a reason to live and become treatable with recovery. Recovery possible, but not if it's too late and they've already had an assisted death.
In other words, terminal prognosis is not inevitable in that instance, if self-induced, driven by disturbance of the mind. Now, I know that the noble and learned Lord, Lord Faulkner, has some insight into the issues in this amendment, as he himself has, as his explained, talked about the issues involved in it, that any disease caused by a 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. And obviously the focus there is on anorexia and eating disorders.
But isn't this a similar example? And I raise these issues because there is a loophole. This is a loophole that's been nagging at me, and I just can't see anywhere in the bill where safeguards exist to prevent such undoubted unintended outcomes. But without those safeguards, that could mean that the drafting of that mean the drafting of the bill could inadvertently incentivise self-destructive choices about treatment, taking treatments for illnesses that are actually treatable and lead to irreversible early death, facilitated by state medical services, when actually life saving medical treatments could have ensured that they live and not be categorised as terminally ill.
And so it's that confusion about who defines what is terminal illness. If you put yourself into the category that I'd like the noble and learned Lord to
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reassure me about and clarify. I added my name to amendment 27,
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I added my name to amendment 27, which details the exclusion of those with diagnosed eating disorders from accessing assisted disorders from accessing assisted dying. Because I considered this a tricky area deserves 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 they 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.
Both written and oral briefings we've received make clear that this is not just a theoretical concern. The Complex life and Death Decisions Group doc briefing on eating disorders documented how, in jurisdictions with assisted dying laws, eating disorders have been redistributed terminally. Once patients stop eating and drinking. 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 of Psychiatry identified at least 60 individuals with eating disorders who died by assisted death in Oregon, Colorado and California jurisdictions by Lord Swire like this bill, assisted dying is restricted to terminal conditions, and a third of those who died were
Now, for supporters of the bill, and I think we heard this in the previous group, the six month prognosis is is presented very often as clear cut. We all know what we mean by terminal illness. And actually usually in public discussions, the examples given are cancer. And again it seems fairly clear cut. But I think we did hear in the previous group that life and death and diseases are rather more complicated. And I thought especially that the noble Lord Lord Moylan raised some very thought provoking, thought provoking issues in that.
So I want to make it a bit more concrete. What terminal illness would mean? In the examples that I talk about, I've noted that the and I've noted that the noble Lady Baroness Coffey actually started this theme in the previous group, and I was very affected by the moving speech by the noble Lord Lord Farmer that also pertains to this. What if someone who is suffering a serious depressive episode, perhaps related to a debilitating physical illness that is difficult but nonetheless treatable? What could they what would happen if, perhaps in a temporary period of despair, they refuse treatments such as dialysis or HIV antivirals, therefore potentially leading them to a situation of terminal ill prognosis? Would they, I ask the noble and learned Lord, be eligible for assisted death in that instance? Or take a suicidal person, perhaps a prisoner suffering mental distress, who is attempting to take his own life several times before.
But suicide prevention policies have saved him. And I'm thinking here actually, particularly of prisoners that have long campaigned for who that have long campaigned for who are on IPP sentences and tragically, suicide figures amongst that group of prisoners is very high and suicidal ideation is a real factor for those prisoners. So our imagined prisoner is not just mentally disturbed, but as it happens, is also physically dependent on insulin for diabetes and needs to take that to remain alive.
If that person refuses to take that treatment and become seriously ill, bringing upon himself the inevitability of having a progressive disease and becoming terminal, would he be eligible for assisted death under this bill? Because it seems to contradict the slogan of many of the bill's supporters, which we frequently hear people saying they're dying. Anyway, as it happens, it's a phrase I find particularly chilling, but in this instance, they aren't dying anyway. They would be dying in a self-induced way.
So how will the idea of terminal illness in those instances be weighed up? But to note, take our IPP prisoner refusing to treat to take the treatment and the insulin, perhaps even refusing to eat or drink, that, of course, could lead to an inevitable assisted death because he would meet the physical criteria of terminal illness. But actually, the root cause is not inevitably progressive. Imagine, for example, and I like to imagine this, that we as parliamentarians, along with campaigners, are successful in ensuring that IPP prisoners are freed from the hopelessness of an abolished sentence.
Because we've been successful. Therefore, that awful, abolished prison sentence which psychiatrists uniformly and consistently say is a major factor in making people suffer mental illness in prison. If that IPP was ended, then that prisoner could resume their medical treatment because their mental ill health would have changed, because the social circumstances would have changed, and therefore they could resume starting their treatment, start engaging again, feel that they have a reason to live and become treatable with recovery. Recovery possible, but not if it's too late and they've already had an assisted death.
In other words, terminal prognosis is not inevitable in that instance, if self-induced, driven by disturbance of the mind. Now, I know that the noble and learned Lord, Lord Faulkner, has some insight into the issues in this amendment, as he himself has, as his explained, talked about the issues involved in it, that any disease caused by a 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. And obviously the focus there is on anorexia and eating disorders.
But isn't this a similar example? And I raise these issues because there is a loophole. This is a loophole that's been nagging at me, and I just can't see anywhere in the bill where safeguards exist to prevent such undoubted unintended outcomes. But without those safeguards, that could mean that the drafting of that mean the drafting of the bill could inadvertently incentivise self-destructive choices about treatment, taking treatments for illnesses that are actually treatable and lead to irreversible early death, facilitated by state medical services, when actually life saving medical treatments could have ensured that they live and not be categorised as terminally ill.
And so it's that confusion about who defines what is terminal illness. If you put yourself into the category that I'd like the noble and learned Lord to
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reassure me about and clarify. I added my name to amendment 27,
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I added my name to amendment 27, which details the exclusion of those with diagnosed eating disorders from accessing assisted disorders from accessing assisted dying. Because I considered this a tricky area deserves 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 they 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.
Both written and oral briefings we've received make clear that this is not just a theoretical concern. The Complex life and Death Decisions Group doc briefing on eating disorders documented how, in jurisdictions with assisted dying laws, eating disorders have been redistributed terminally. Once patients stop eating and drinking. 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 of Psychiatry identified at least 60 individuals with eating disorders who died by assisted death in Oregon, Colorado and California jurisdictions by Lord Swire like this bill, assisted dying is restricted to terminal conditions, and a third of those who died were
12:16
Baroness Hollins (Crossbench)
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Baroness Hollins (Crossbench)
in their teens or 20s, and all were women. Cases like this demonstrate the danger of conflating treatment the danger of conflating treatment refusal with terminal illness and mistaking the voice of a life threatening psychiatric disorder threatening psychiatric disorder for wished to die. Starvation affects the brain in profound ways, affects the brain in profound ways, including causing rigidity of thinking and allowing the illness itself to dominate choices. And itself to dominate choices. And this can even happen 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. And we need to acknowledge this complexity and proceed with the utmost care, recognising that these individuals are among those most at risk under this Bill.
My Lords, those who refuse to eat or drink because of mental illness must also be excluded from the scope of the bill so that we can properly safeguard them and ensure they receive the treatment and support they need to recover. So amendment 87 A is a valuable clarification, ensuring that it applies regardless of whether the refusal of food or drink is voluntary or whether it arises from a mental disorder, thus preventing any ambiguity that could otherwise allow conditions such as catatonia or other serious mental illnesses to be misclassified as terminal under the bill.
It provides 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. Amendment 90 and 92, amendment 103, also cover this key area and 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. Person cannot therefore be considered terminally ill. Their life threatening condition arises from the secondary effects of mental illness.
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. And we need to acknowledge this complexity and proceed with the utmost care, recognising that these individuals are among those most at risk under this Bill.
My Lords, those who refuse to eat or drink because of mental illness must also be excluded from the scope of the bill so that we can properly safeguard them and ensure they receive the treatment and support they need to recover. So amendment 87 A is a valuable clarification, ensuring that it applies regardless of whether the refusal of food or drink is voluntary or whether it arises from a mental disorder, thus preventing any ambiguity that could otherwise allow conditions such as catatonia or other serious mental illnesses to be misclassified as terminal under the bill.
It provides 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. Amendment 90 and 92, amendment 103, also cover this key area and 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. Person cannot therefore be considered terminally ill. Their life threatening condition arises from the secondary effects of mental illness.
12:19
Baroness O'Loan (Crossbench)
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Baroness O'Loan (Crossbench)
The issues raised in this group are very extensive and they are a are very extensive and they are 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, insulin and many other treatments. Refusing food or treatment is a choice which a patient is entitled to make. If a patient has the capacity to make such a decision. However, that cannot translate into an obligation on the state to help the person to kill themselves, and that was actually recognised, I think, as the noble and learned Lord Woolf, Faulkner said by the bill's sponsor in the other place, hence the wording of clause 22 of the bill and the noble and learned Lord, Lord Faulkner's Amendment 87 actually removes the safeguard offered by clause 22, as it prevents the bill from 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 which start offering assistance to die in a very limited circumstances, but only short term afterwards. The grounds for a state helping people killing themselves expand, in some cases almost inconceivably. No wheelchair will help you die. No home will help you die suffering from PTSD after military service, we will help you die. In many jurisdictions, anorexia, which is a treatable illness, is accepted as a justification for assisted suicide, etc. all the examples which I gave no wheelchair, no home and are suffering PTSD are all grounds for assisted dying in Canada recently.
There are many suggestions as to how to address the terrible vacuum through which all sorts of conditions which are not terminal could, as a consequence of refusing food treatment or hydration, become terminal. I put my name to one such amendment in the name of Baroness Parminter amendment 101, and I look at the amendments in this group other than amendment 87. They all seek to address the issue. It's very clear, however, that the list of conditions and situations currently provided in clause two as exceptions to the definition of terminal illness, are not adequate.
The noble and learned Lord, Lord Faulkner, has even removed from the bill the more general safeguard inserted by the MP for Batley and Spen, the noble Lord noble and learned Lord Low Faulkner, will actually have to move far beyond his amendment 87 and 87 if he is to satisfy the House that the definition of the situations which do not qualify as terminal illness is in any way satisfaction satisfactory. My Lords, 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 in the case of girls, it was 4.3%, compared with boys where it was only 1%. 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 boys at 5.1%.
And these are NHS figures and a review of current literature up to 2022. Investigating suicide in eating disorders found that the prevalence of suicide suicidal ideation was 51%, and the prevalence of suicide attempts was 22%. I am very grateful to the young intern who, doing a PhD, 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 1 in 5 of those suffering from an eating disorder will attempt to take their own lives.
Although the disorder which they suffer can be treated if they get proper treatment. My Lords, this bill effectively creates a class of people, particularly disabled people, diabetics, those on dialysis, and others who need continuous life sustaining treatment, who cannot, 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 Filkin explain how creating a class of disabled people for whom voluntary suicide is legal and state supported, is consistent with the United Kingdom's obligations under articles two and 14 of the European Convention.
My Lord, I have.
Many states which start offering assistance to die in a very limited circumstances, but only short term afterwards. The grounds for a state helping people killing themselves expand, in some cases almost inconceivably. No wheelchair will help you die. No home will help you die suffering from PTSD after military service, we will help you die. In many jurisdictions, anorexia, which is a treatable illness, is accepted as a justification for assisted suicide, etc. all the examples which I gave no wheelchair, no home and are suffering PTSD are all grounds for assisted dying in Canada recently.
There are many suggestions as to how to address the terrible vacuum through which all sorts of conditions which are not terminal could, as a consequence of refusing food treatment or hydration, become terminal. I put my name to one such amendment in the name of Baroness Parminter amendment 101, and I look at the amendments in this group other than amendment 87. They all seek to address the issue. It's very clear, however, that the list of conditions and situations currently provided in clause two as exceptions to the definition of terminal illness, are not adequate.
The noble and learned Lord, Lord Faulkner, has even removed from the bill the more general safeguard inserted by the MP for Batley and Spen, the noble Lord noble and learned Lord Low Faulkner, will actually have to move far beyond his amendment 87 and 87 if he is to satisfy the House that the definition of the situations which do not qualify as terminal illness is in any way satisfaction satisfactory. My Lords, 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 in the case of girls, it was 4.3%, compared with boys where it was only 1%. 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 boys at 5.1%.
And these are NHS figures and a review of current literature up to 2022. Investigating suicide in eating disorders found that the prevalence of suicide suicidal ideation was 51%, and the prevalence of suicide attempts was 22%. I am very grateful to the young intern who, doing a PhD, 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 1 in 5 of those suffering from an eating disorder will attempt to take their own lives.
Although the disorder which they suffer can be treated if they get proper treatment. My Lords, this bill effectively creates a class of people, particularly disabled people, diabetics, those on dialysis, and others who need continuous life sustaining treatment, who cannot, 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 Filkin explain how creating a class of disabled people for whom voluntary suicide is legal and state supported, is consistent with the United Kingdom's obligations under articles two and 14 of the European Convention.
My Lord, I have.
12:25
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
An amendment in this group, an >> An amendment in this group, an amendment that was recommended by the Complex Life and Death the Complex Life and Death Decisions group at King's and which builds on the clause that was inserted in the other place. Currently clause two two by the MP for Bradford West, and that was accepted by the other place. The amendment before US 87 seems to knock that out and but it does have an amendment to it which has been so clearly explained by the noble Lady Baroness Keeley in moving that amendment.
This seems to be the start of an improvement, which is very necessary, but it doesn't do everything. And I think there is a concern that those with other types of eating disorder can effectively be missed out or slipped through the net, particularly bulimia. Those who go on completely bizarre diets and end up with very severe nutritional or malnutritional states. Two examples that I've known directly have been one person who believed that he could only live on cottage cheese, and another one who was eating kilograms of parsnips every day in a belief that that would cure her disease and ended up with quite severe metabolic disturbances.
The. The problem is with the amendment so far also, is how they've failed to exclude voluntary stopping eating and drinking per se, designed deliberately to make you terminally ill. And if I may just quote the problem of tide, which is the type one diabetic with an eating disorder. Leslie and Neil lost Megan at Dignitas from tide. Megan was their young daughter. After years of inadequate treatment, and I have permission to use to quote them, they said following an adequate and inappropriate inpatient and community treatment for tide, 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 committing suicide, she said I don't really want to die, I just can't do this anymore. And I think that illustrates the real difficulty for young people with disorders that are on the boundary here, and I hope that we can build on these amendments at Report stage to make sure that they really are watertight.
This seems to be the start of an improvement, which is very necessary, but it doesn't do everything. And I think there is a concern that those with other types of eating disorder can effectively be missed out or slipped through the net, particularly bulimia. Those who go on completely bizarre diets and end up with very severe nutritional or malnutritional states. Two examples that I've known directly have been one person who believed that he could only live on cottage cheese, and another one who was eating kilograms of parsnips every day in a belief that that would cure her disease and ended up with quite severe metabolic disturbances.
The. The problem is with the amendment so far also, is how they've failed to exclude voluntary stopping eating and drinking per se, designed deliberately to make you terminally ill. And if I may just quote the problem of tide, which is the type one diabetic with an eating disorder. Leslie and Neil lost Megan at Dignitas from tide. Megan was their young daughter. After years of inadequate treatment, and I have permission to use to quote them, they said following an adequate and inappropriate inpatient and community treatment for tide, 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 committing suicide, she said I don't really want to die, I just can't do this anymore. And I think that illustrates the real difficulty for young people with disorders that are on the boundary here, and I hope that we can build on these amendments at Report stage to make sure that they really are watertight.
12:28
Lord McCrea of Magherafelt and Cookstown (Democratic Unionist Party)
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Lord McCrea of Magherafelt and Cookstown (Democratic Unionist Party)
To support amendments. >> 89, 91, 92, 101 and 103. My Lord, surely we need to demonstrate that what we term safeguards in this what we term safeguards in this bill against voluntarily becoming bill against voluntarily becoming terminally ill are adequate and not allow for voluntary acts to accelerate the timeline or even create eligibility for assisted suicide. There seems to be a lack of clarity between terminal illness and eating disorder, or voluntary action, which could undermine the very structure of the bill itself.
Does noble and learned Lord Faulkner in this, in his amendment 87, not row back on Kim Leadbeater's previous amendment in the Commons? It seems that this amendment is significant narrow, significantly narrower. Can I ask him, can a suicidal person dependent upon insulin or dialysis to remain alive, refuse this treatment and become eligible under this bill? However, if he believes that the cases of voluntary withdrawing life sustaining treatment to voluntarily induce a terminal illness such as insulin example should not be eligible under this bill, then why does he oppose amendments that would close that loophole throughout the passage of the bill in the Commons, it was flagged that the bill's wording contained a dangerous loophole that could lead to vulnerable people with eating disorders qualifying for assisted suicide, which is contrary to the bill's stated intent that focuses only upon terminally physically ill.
Now, as I've said, the bill potentially contains imagery for those who refuse treatment, even for illnesses which would not normally be considered terminal might come within the bill's definition. Someone with diabetes, for instance, who stopped taking insulin, or someone with heart disease who stopped taking medication could be eligible for assisted suicide. Now, in Oregon in 20 21, 23, annual reports they list diabetes, arthritis, hernias, kidney failure as conditions that qualify for assisted suicide not because they were inherently fatal, but because treatment was refused or unavailable.
Therefore, patients with non-terminal conditions can become terminal by choosing to forego life extending treatments without treatment. Type one diabetes is an inevitably progressive and irreversible condition that would result in death, certainly in weeks, not necessarily months. But with insulin. A person with diabetes can live long and healthy lives. For many years now, Lords, experts and charities say the bill does not contain any provision that to prevent individuals with eating disorders from being classified as terminally ill, they support the amendments to make the bill safer, all of which were rejected in committee.
The other place I would ask, indeed, that noble Lords would think carefully about the amendments that are before the House and support amendments, as have already said, 89, 91, 92, 101 and 103.
Does noble and learned Lord Faulkner in this, in his amendment 87, not row back on Kim Leadbeater's previous amendment in the Commons? It seems that this amendment is significant narrow, significantly narrower. Can I ask him, can a suicidal person dependent upon insulin or dialysis to remain alive, refuse this treatment and become eligible under this bill? However, if he believes that the cases of voluntary withdrawing life sustaining treatment to voluntarily induce a terminal illness such as insulin example should not be eligible under this bill, then why does he oppose amendments that would close that loophole throughout the passage of the bill in the Commons, it was flagged that the bill's wording contained a dangerous loophole that could lead to vulnerable people with eating disorders qualifying for assisted suicide, which is contrary to the bill's stated intent that focuses only upon terminally physically ill.
Now, as I've said, the bill potentially contains imagery for those who refuse treatment, even for illnesses which would not normally be considered terminal might come within the bill's definition. Someone with diabetes, for instance, who stopped taking insulin, or someone with heart disease who stopped taking medication could be eligible for assisted suicide. Now, in Oregon in 20 21, 23, annual reports they list diabetes, arthritis, hernias, kidney failure as conditions that qualify for assisted suicide not because they were inherently fatal, but because treatment was refused or unavailable.
Therefore, patients with non-terminal conditions can become terminal by choosing to forego life extending treatments without treatment. Type one diabetes is an inevitably progressive and irreversible condition that would result in death, certainly in weeks, not necessarily months. But with insulin. A person with diabetes can live long and healthy lives. For many years now, Lords, experts and charities say the bill does not contain any provision that to prevent individuals with eating disorders from being classified as terminally ill, they support the amendments to make the bill safer, all of which were rejected in committee.
The other place I would ask, indeed, that noble Lords would think carefully about the amendments that are before the House and support amendments, as have already said, 89, 91, 92, 101 and 103.
12:32
Baroness Gerada (Crossbench)
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Baroness Gerada (Crossbench)
Lords. >> Lords. >> Say that I'm completely in favour of amendment S87. I have permission to use the name of my permission to use the name of my patient who died from anorexia nervosa. She in fact died from taking her own life. Melanie Spooner Anorexia nervosa the end point of anorexia nervosa is often the patient wants to die, and as such it is a terrible mental illness, and conflating and putting and excluding this group, I think, is absolutely the right way forward.
Before I sit down, can I just make one other comment which has been bothering me ever since I've come to these Fridays? It is conflating the word assisted suicide with assisted death. For a decade now, I've been looking after those bereaved following the death through suicide of of of their loved ones. And I have about a hundred people that I care for. Suicide is often a violent act. It is often an act done alone. It is often an act done to punish people.
And I say this and I'm terribly sorry if you have people who have killed themselves. And it's a very prolonged bereavement, very complicated grief that affects up to 60 to 70 people in its wake assisted death, as we've heard from the group that came from Australia, sometimes can be filled with hope, certainly sometimes with joy, with your family around, with those last moments that you have. So I just say please because it affects both groups. It affects the groups I look look after who've bereaved following suicide, and it affects those who have the relatives, of those who have taken voluntary assisted death.
And it is such a small thing that it really great. And really, when you're listening to this, it is one of, I think, the most inappropriate and irresponsible ways of conflating
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the language. Thank you for. Before. Before the noble Lady sits down, can I ask her whether sits down, can I ask her whether she's aware that recent research has shown that 42% of people think that assisted death is actually the provision of palliative care, and provision of palliative care, and that is actually quite important to
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distinguish between the two. I wasn't aware of that research. The evidence shows, and we heard it from the Australian group that where assisted voluntary assisted death is in place, it actually improves the the provision of palliative care. And actually in Australia, a great deal more resource was put in to providing palliative care. But my point is, my Lords is please can we no longer conflate the language of assisted suicide with voluntary assisted death? Yes.
Before I sit down, can I just make one other comment which has been bothering me ever since I've come to these Fridays? It is conflating the word assisted suicide with assisted death. For a decade now, I've been looking after those bereaved following the death through suicide of of of their loved ones. And I have about a hundred people that I care for. Suicide is often a violent act. It is often an act done alone. It is often an act done to punish people.
And I say this and I'm terribly sorry if you have people who have killed themselves. And it's a very prolonged bereavement, very complicated grief that affects up to 60 to 70 people in its wake assisted death, as we've heard from the group that came from Australia, sometimes can be filled with hope, certainly sometimes with joy, with your family around, with those last moments that you have. So I just say please because it affects both groups. It affects the groups I look look after who've bereaved following suicide, and it affects those who have the relatives, of those who have taken voluntary assisted death.
And it is such a small thing that it really great. And really, when you're listening to this, it is one of, I think, the most inappropriate and irresponsible ways of conflating
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the language. Thank you for. Before. Before the noble Lady sits down, can I ask her whether sits down, can I ask her whether she's aware that recent research has shown that 42% of people think that assisted death is actually the provision of palliative care, and provision of palliative care, and that is actually quite important to
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distinguish between the two. I wasn't aware of that research. The evidence shows, and we heard it from the Australian group that where assisted voluntary assisted death is in place, it actually improves the the provision of palliative care. And actually in Australia, a great deal more resource was put in to providing palliative care. But my point is, my Lords is please can we no longer conflate the language of assisted suicide with voluntary assisted death? Yes.
12:35
Lord Moore of Etchingham (Non-affiliated)
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Lord Moore of Etchingham (Non-affiliated)
My Lord, I of course agree with the noble Lady that there are many different motives for killing different motives for killing yourself. But we're talking about making a law here, and it's very, making a law here, and it's very, very important that the natural and ordinary meaning of words is established and preserved. And suicide. Suicide means killing yourself. And what is being proposed in the bill is killing yourself with assistance. Very, very important to keep explaining that to people, because otherwise they will be permanently misled about what's actually happening.
Yeah.
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Lord says that we should understand the ordinary meaning of understand the ordinary meaning of words, and I agree with him. But I have to say to him that my own mother, who turned her face to the door and stopped eating and 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 end of her life. She was terminally ill and she decided that she had enough.
She didn't want the next blood transfusion, she didn't want any more time. And I find it really offensive to be told that she offensive to be told that she committed suicide. Yeah.
Yeah.
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Lord says that we should understand the ordinary meaning of understand the ordinary meaning of words, and I agree with him. But I have to say to him that my own mother, who turned her face to the door and stopped eating and 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 end of her life. She was terminally ill and she decided that she had enough.
She didn't want the next blood transfusion, she didn't want any more time. And I find it really offensive to be told that she offensive to be told that she committed suicide. Yeah.
12:36
Baroness Hayman (Crossbench)
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Baroness Hayman (Crossbench)
In response also to question two, the noble Lady Baroness Gerada words do matter, which is why plain speaking matters. And being told you can't say certain words because they might offend someone is unhelpful. Could the noble Lady or ladies respond to the fact that in opinion polling, if you ask people if they support assisted dying,
12:36
Baroness Fox of Buckley (Non-affiliated)
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Baroness Fox of Buckley (Non-affiliated)
many people will say yes. If you say do you support assisted suicide, they say no. In other words, calling something what it is, which is actually suicide, is not is actually suicide, is not necessarily something which the noble Ladies should be frightened of. They should actually, but they can't instruct us as legislators to do the job of spin doctors in do the job of spin doctors in actually trying to make something more palatable by using kinder words. We have to be honest with the public and they'll decide it's up to them.
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I see in response to the noble Lady, Lady Gerada surely does she agree with me? The cardinal difference between suicide and voluntary assisted death is voluntary assisted death is voluntary. Assisted death applies to people who are dying already. to people who are dying already. There is no way that they are going to survive. And that seems to me to to survive. And that seems to me to be making the whole difference what we seek in this bill. And I very
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I see in response to the noble Lady, Lady Gerada surely does she agree with me? The cardinal difference between suicide and voluntary assisted death is voluntary assisted death is voluntary. Assisted death applies to people who are dying already. to people who are dying already. There is no way that they are going to survive. And that seems to me to to survive. And that seems to me to be making the whole difference what we seek in this bill. And I very
12:37
Baroness Whitaker (Labour)
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Baroness Whitaker (Labour)
much support the safeguard proposed by my noble friend in amendment 87. What we are proposing is that this process of dying should be free process of dying should be free from terror and pain and from terror and pain and humiliation. It won't stop the person dying, therefore it is not.
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person dying, therefore it is not. If I may follow up the noble Baroness Cass point about the very sad story of her mother and how her mother died. This would not be considered to be suicide under the law, as I understand it, and indeed it's been discussed quite a lot in the course of this bill, that if
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you refuse treatment, that is not suicide. You understand that, and I understand that she wouldn't have been considered to commit suicide. been considered to commit suicide. What I'm trying to say is that her What I'm 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, wasn't not assisted dying, wasn't available to her, didn't come into the equation, but that the categorisation of that as suicide and this is Bill is being called assisted suicide.
I agree with the
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person dying, therefore it is not. If I may follow up the noble Baroness Cass point about the very sad story of her mother and how her mother died. This would not be considered to be suicide under the law, as I understand it, and indeed it's been discussed quite a lot in the course of this bill, that if
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you refuse treatment, that is not suicide. You understand that, and I understand that she wouldn't have been considered to commit suicide. been considered to commit suicide. What I'm trying to say is that her What I'm 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, wasn't not assisted dying, wasn't available to her, didn't come into the equation, but that the categorisation of that as suicide and this is Bill is being called assisted suicide.
I agree with the
12:39
Baroness Hayman (Crossbench)
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Baroness Hayman (Crossbench)
noble Lady, Lady Fox, that we have to be clear. It's not that I'm to be clear. It's not that I'm taking offence. I think that it is taking offence. I think that it is wrong to categorise people who wish their life to come to an end and therefore refuse treatment, refuse food or under the provisions of food or under the provisions of this act, go for assisted dying are in some way committing suicide.
12:39
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
My Lords, I wonder if I might briefly apologise to the House. I briefly apologise to the House. I was reading a quote. They were not my words, but the quote was about a young woman who, to quote, was said to have committed suicide. I do think 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. And I know for people who have been the relatives of those who have died, taken their own life by suicide, the term commit can be really deeply offensive.
But as many people in this chamber will know, when you have experienced a suicide in someone very close to you, yes, it lives on and it lives on in a way that a death also lives on in the person left behind. But I, I apologise because this was a quote I was reading, and I think that we should return to the topic of the
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amendments before us, if we may. I.
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I. My Lords, I'm going to do as requested by the noble Lady requested by the noble Lady Baroness Finlay to carry on with the group of amendments before us. And if I could just echo the sentiment that was just expressed about the language that we use in this place. And it does matter. There are members on all sides that
But as many people in this chamber will know, when you have experienced a suicide in someone very close to you, yes, it lives on and it lives on in a way that a death also lives on in the person left behind. But I, I apologise because this was a quote I was reading, and I think that we should return to the topic of the
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amendments before us, if we may. I.
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I. My Lords, I'm going to do as requested by the noble Lady requested by the noble Lady Baroness Finlay to carry on with the group of amendments before us. And if I could just echo the sentiment that was just expressed about the language that we use in this place. And it does matter. There are members on all sides that
12:40
Baroness Berger (Labour)
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Baroness Berger (Labour)
There are members on all sides that have used the term commit suicide. Suicide is no longer a crime or a sin. And on that basis, for those people affected by suicide and those left behind, I think it's a good reminder that we should all endeavour wherever possible, in the same way that the media tries to do so outside of this place, to not use that terminology. I would just also in reference to one of the points that was just made by Baroness Gerada, just lightly saying, we're going to, I think, come back to these points in some later amendments, that complicated grief can arise from an assisted death.
And we are going to and I'm going to propose some amendments to address that, to think about those people that are left behind. We certainly have evidence from that in other jurisdictions. And also, we do know that adverse complications can arise from the drugs that people ingest from an assisted death, and that has and can have far reaching consequences for people left behind. And we will debate that at a later moment. I just want to rise. As a signatory to amendment 87, A, to welcome the fact that these important changes will be accepted along with amendment 87.
But I just want to reiterate and add some additional information to say that it's really important to acknowledge that these amendments do not address all of the gaps connected to eating disorders, because there is no protection to people whose eating disorders may bring them. Within the scope of this bill's definition of terminal illness. In other ways, that includes refusing treatment rather than food, which is addressed in amendment 92, which I don't believe is an amendment that the sponsor would accept at the moment, or where a person with bulimia sustains damage to their organs through vomiting.
And why does this matter? We've talked about anorexia and anorexia is a is a is a fatal disease. It's one of the mental health conditions in this country, which leads to the greatest loss of life as a mental illness, but it only represents a minority of eating disorder cases in the UK. There was a large population study that was published in 2017 that found that anorexia accounted for just 8% of eating disorder cases. Bulimia, we know, is far more common, but it can also be fatal, with well-established risks including sudden cardiac death, severe electrolyte disturbance and forgive me to pronounce this word, but a rupture of the oesophagus.
But this amendment, as put forward rightly focuses on anorexia. But certainly, as someone who has been a signatory to 87, I recognise and acknowledge that we must do everything to to provide protection to all people with eating disorders in this country, including bulimia.
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Thank you, my Lords. I rise to introduce amendment 101, which I introduce amendment 101, which I drafted in order to try and close the dangerous loophole that remains the dangerous loophole that remains in this bill at the moment whereby people with eating disorders could qualify for an assisted death, qualify for an assisted death, contrary to the intent of the sponsors to limit the bill to people with a terminal life people with a terminal life limiting illness. But there is a
And we are going to and I'm going to propose some amendments to address that, to think about those people that are left behind. We certainly have evidence from that in other jurisdictions. And also, we do know that adverse complications can arise from the drugs that people ingest from an assisted death, and that has and can have far reaching consequences for people left behind. And we will debate that at a later moment. I just want to rise. As a signatory to amendment 87, A, to welcome the fact that these important changes will be accepted along with amendment 87.
But I just want to reiterate and add some additional information to say that it's really important to acknowledge that these amendments do not address all of the gaps connected to eating disorders, because there is no protection to people whose eating disorders may bring them. Within the scope of this bill's definition of terminal illness. In other ways, that includes refusing treatment rather than food, which is addressed in amendment 92, which I don't believe is an amendment that the sponsor would accept at the moment, or where a person with bulimia sustains damage to their organs through vomiting.
And why does this matter? We've talked about anorexia and anorexia is a is a is a fatal disease. It's one of the mental health conditions in this country, which leads to the greatest loss of life as a mental illness, but it only represents a minority of eating disorder cases in the UK. There was a large population study that was published in 2017 that found that anorexia accounted for just 8% of eating disorder cases. Bulimia, we know, is far more common, but it can also be fatal, with well-established risks including sudden cardiac death, severe electrolyte disturbance and forgive me to pronounce this word, but a rupture of the oesophagus.
But this amendment, as put forward rightly focuses on anorexia. But certainly, as someone who has been a signatory to 87, I recognise and acknowledge that we must do everything to to provide protection to all people with eating disorders in this country, including bulimia.
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Thank you, my Lords. I rise to introduce amendment 101, which I introduce amendment 101, which I drafted in order to try and close the dangerous loophole that remains the dangerous loophole that remains in this bill at the moment whereby people with eating disorders could qualify for an assisted death, qualify for an assisted death, contrary to the intent of the sponsors to limit the bill to people with a terminal life people with a terminal life limiting illness. But there is a
12:44
Baroness Parminter (Liberal Democrat)
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Baroness Parminter (Liberal Democrat)
raft of amendments, I think reflects that. The House recognising recognises that that loophole is there and that is welcome, and I welcome all the welcome, and I welcome all the amendments in this grouping. My focus has consistently been on the focus has consistently been on the most deadly of all eating disorders, that of anorexia, which was so well articulated by Baroness Hollins, and in particular, how my worry with the bill as it stands, that if treatment is delayed or withheld or withdrawn, then people with a mental illness, their physical health could deteriorate to a life threatening degree, and they would therefore then be subject to the provisions of the bill.
I'm very grateful to the three noble Lords, Baroness Aloin, Lord Carlile and Baroness, who supported me in my amendment. I drafted it and I stand by it, though I recognise there are some challenges because I drafted it rather too broadly, and therefore I am particularly grateful that the sponsors have come forward with their own amendment. I think it is particularly to be welcomed, since it wasn't until this issue of eating disorders was debated in this House that the sponsors recognised there was a dangerous loophole.
And in that regard, I think the House can be proud of the job that is done in identifying this dangerous loophole. I therefore support the amendment that the noble and learned Lord Coaker is proposing and the amendment to it. I think it is a reasonable safeguard for the very vulnerable, often young women who suffer from anorexia, which is an appalling, appalling disease. And I urge the House to support it.
I'm very grateful to the three noble Lords, Baroness Aloin, Lord Carlile and Baroness, who supported me in my amendment. I drafted it and I stand by it, though I recognise there are some challenges because I drafted it rather too broadly, and therefore I am particularly grateful that the sponsors have come forward with their own amendment. I think it is particularly to be welcomed, since it wasn't until this issue of eating disorders was debated in this House that the sponsors recognised there was a dangerous loophole.
And in that regard, I think the House can be proud of the job that is done in identifying this dangerous loophole. I therefore support the amendment that the noble and learned Lord Coaker is proposing and the amendment to it. I think it is a reasonable safeguard for the very vulnerable, often young women who suffer from anorexia, which is an appalling, appalling disease. And I urge the House to support it.
12:46
Lord Harper (Conservative)
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Lord Harper (Conservative)
Hear, hear. a couple of process points, which I think are important. I've listened very carefully to those who have very carefully to those who have considerable expertise on the clinical issues raised by these clinical issues raised by these amendments. So I just want to cover these points. So Baroness Parminter has just made the point that this issue, this loophole, however you want to describe it, has been well understood for some time, and it wasn't dealt with in the House of Commons, and it could have been.
And all I would gently say, because there is some frustration from the supporters of this Bill about the time taken to scrutinise it is I'll repeat what I've said before, which is part of the reason why your Lordships are having to table significant amendments and debate this bill at length is because there are considerable gaps in it that have been known for some time that have not previously been dealt with. And I think Baroness Parminter was exactly right to point out that it's this House that will have delivered an amendment which has made that considerable improvement, which has been argued for by a number of people for some considerable time.
And so I think we're doing good work here. Whatever you think about the principle of the bill in improving the legislative drafting, the noble and learned Lord, Lord Falconer, made a reference at the beginning about whether the House would accept that the change to the bill. And I would make a very clear distinction here, and I'm going to be very supportive of his position between the earlier debate we had on what he described as drafting amendments, which many of us considered were not drafting amendments, but were quite significant changes where we made it very clear that if he were to try and press those, we would oppose him.
In this particular case, I think amendment, his amendment 87, as amended by amendment 87, clearly resolves one issue in the bill. I think that is welcome. And I, for myself, would certainly have no objection if he were to press the amendment, and I hope the House would accept it, because I think that would improve the bill. I think there's general agreement that it would improve the bill. The final point I would make is this, though, as has been said by by Baroness Parminter and Baroness Berger, fixes one problem.
It deals as I understand it. And I say to you, noble Lords, I'm not an expert in this area at all, but I understand from those that are that it does deal with the issue of anorexia, but it does leave other eating disorders like bulimia. As the noble Lady Baroness Berger said, still unresolved. And there are some other amendments in this group that try to raise those. So what I hope is two things. When the Minister responds, I hope she can commit at a later stage to setting out that, in the government's view, in the Department of Health's view, if they look at the span of eating disorders, whether when we've made some more progress on the bill, that the bill does actually deal with those.
That's a factual point, not a not an expression of your, you know, policy position. And then when the noble Lords, the noble and learned Lord responds, as well as pressing and 87, as amended by 80 7AI hope he can say something positive about what work he's going to conduct with the Department of Health. On trying to draft some later amendments that Report stage that will 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, because, as we've heard, they affect a very significant number of people, and particularly younger people and particularly younger women.
And I want to make sure that we properly protect them
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as this bill proceeds through. Your Lordships' House. Yeah. I signed the noble and learned Lords amendment, and I thank him very much for introducing it. In my view, it's a very important amendment for those of your Lordships who have ever seen a serious eating disorder at close serious eating disorder at close quarters, you will know that it is not just something that disturbs
And all I would gently say, because there is some frustration from the supporters of this Bill about the time taken to scrutinise it is I'll repeat what I've said before, which is part of the reason why your Lordships are having to table significant amendments and debate this bill at length is because there are considerable gaps in it that have been known for some time that have not previously been dealt with. And I think Baroness Parminter was exactly right to point out that it's this House that will have delivered an amendment which has made that considerable improvement, which has been argued for by a number of people for some considerable time.
And so I think we're doing good work here. Whatever you think about the principle of the bill in improving the legislative drafting, the noble and learned Lord, Lord Falconer, made a reference at the beginning about whether the House would accept that the change to the bill. And I would make a very clear distinction here, and I'm going to be very supportive of his position between the earlier debate we had on what he described as drafting amendments, which many of us considered were not drafting amendments, but were quite significant changes where we made it very clear that if he were to try and press those, we would oppose him.
In this particular case, I think amendment, his amendment 87, as amended by amendment 87, clearly resolves one issue in the bill. I think that is welcome. And I, for myself, would certainly have no objection if he were to press the amendment, and I hope the House would accept it, because I think that would improve the bill. I think there's general agreement that it would improve the bill. The final point I would make is this, though, as has been said by by Baroness Parminter and Baroness Berger, fixes one problem.
It deals as I understand it. And I say to you, noble Lords, I'm not an expert in this area at all, but I understand from those that are that it does deal with the issue of anorexia, but it does leave other eating disorders like bulimia. As the noble Lady Baroness Berger said, still unresolved. And there are some other amendments in this group that try to raise those. So what I hope is two things. When the Minister responds, I hope she can commit at a later stage to setting out that, in the government's view, in the Department of Health's view, if they look at the span of eating disorders, whether when we've made some more progress on the bill, that the bill does actually deal with those.
That's a factual point, not a not an expression of your, you know, policy position. And then when the noble Lords, the noble and learned Lord responds, as well as pressing and 87, as amended by 80 7AI hope he can say something positive about what work he's going to conduct with the Department of Health. On trying to draft some later amendments that Report stage that will 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, because, as we've heard, they affect a very significant number of people, and particularly younger people and particularly younger women.
And I want to make sure that we properly protect them
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as this bill proceeds through. Your Lordships' House. Yeah. I signed the noble and learned Lords amendment, and I thank him very much for introducing it. In my view, it's a very important amendment for those of your Lordships who have ever seen a serious eating disorder at close serious eating disorder at close quarters, you will know that it is not just something that disturbs
12:50
Lord Carlile of Berriew (Crossbench)
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Lord Carlile of Berriew (Crossbench)
not just something that disturbs the person who suffers from that eating disorder, but dramatically affects everybody around them. And it is all too easy to be fatalistic about it and not challenge it and try and make one's way through it. It is a condition which in my view, produces three possible outcomes one in all too many cases, as we've heard, suicide in some in quite a number of cases recovery. But possibly for most people who've suffered from anorexia, particularly at a young age, they learn to live with it.
And 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 for everybody who suffers from an eating disorder. And 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
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remotely resembling this bill. I wanted to say, as I have
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I wanted to say, as I have several times pointed out, that one of the reasons this bill takes so long is that the proponents have long is that the proponents have not been willing to make some of the changes, which many of us would feel perfectly sensible. I want to thank the noble and learned Lord for this amendment. I think he must for this amendment. I think he must also agree that the debate that has followed has actually brought to
And 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 for everybody who suffers from an eating disorder. And 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
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remotely resembling this bill. I wanted to say, as I have
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I wanted to say, as I have several times pointed out, that one of the reasons this bill takes so long is that the proponents have long is that the proponents have not been willing to make some of the changes, which many of us would feel perfectly sensible. I want to thank the noble and learned Lord for this amendment. I think he must for this amendment. I think he must also agree that the debate that has followed has actually brought to
12:52
Lord Deben (Conservative)
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Lord Deben (Conservative)
the surface a number of issues which need to be considered, and no which need to be considered, and no doubt will be considered when we get to Report stage. But the reason get to Report stage. But the reason I rise is just to say to him, I do find it pretty unacceptable when I've sat through almost every moment of this bill and learnt so much from the discussions that had much from the discussions that had taken place, for him to suggest that somehow or other we ought to do it more quickly.
Because the fact is this is a very badly produced bill. It's opposed by every single organisation representing the people who've got to actually do it, and by every single representative. I will give way in a moment, but every single representative, disabled people, if this House isn't here to go through those details which others have raised outside, I really do wonder what the House of Lords is supposed to be. And I do think that the noble and learned Lord ought to give some of us credit for the fact that whatever we think about this bill, we want to make it as good as
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it can be. And that means you actually have to discuss it properly. I will give way. Thank you. Sorry, it was just
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Thank you. Sorry, it was just one point where the noble Lord or my noble friend mentioned it was my noble friend mentioned it was opposed by every one of the groups. And again, we took evidence from all these groups. The position is actually that they're neutral on it actually that they're neutral on it because their membership are split on it. So you take the Royal College of Nurses, the GPS, they're College of Nurses, the GPS, they're neutral. So it's not right to say that they oppose.
At the same time, it's not right to say that they support. And I've heard a number of times, noble Lords say that there's no groups that support it. And at the same time you say there's no groups that oppose it. The fact is
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that they all take a neutral part because their memberships are split. So that was, I understand, an interruption. I just want to say the fact is that it. But may I just the fact is that it. But may I just say, the fact is that none of the organisations which are going to organisations which are going to 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're going to have a better bill, that's what we are here to do. And I object to the fact that my time is being taken up trying to help. And then I'm told that somehow or other it's filibustering.
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My intervention was just to clarify that these organisations, including five Royal Colleges, the including five Royal Colleges, the British Association of Social Workers, all the list of all the organisations for on behalf of disabled people, many of them are neutral on the principle of assisted death. But on this bill assisted death. But on this bill there is no external organisation that will attest to the safety of the legislation. That is before us the legislation. That is before us that we are discussing today and as we have done on previous days, and I think that should be of concern
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to us all. Just respond. To many. Points have been made around the chamber today in relation to chamber today in relation to disability. Apparently, the most recent large survey, which was recent large survey, which was carried out by Opinium in February 2024 of nearly 11,000 respondents 2024 of nearly 11,000 respondents in this in the UK showed the general population was 75% general population was 75% supportive and 14% people opposed to to to this bill. And of those who had a disability, 78% were who had a disability, 78% were supportive and 14% opposed.
I think it's very important to put those figures on the record.
Because the fact is this is a very badly produced bill. It's opposed by every single organisation representing the people who've got to actually do it, and by every single representative. I will give way in a moment, but every single representative, disabled people, if this House isn't here to go through those details which others have raised outside, I really do wonder what the House of Lords is supposed to be. And I do think that the noble and learned Lord ought to give some of us credit for the fact that whatever we think about this bill, we want to make it as good as
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it can be. And that means you actually have to discuss it properly. I will give way. Thank you. Sorry, it was just
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Thank you. Sorry, it was just one point where the noble Lord or my noble friend mentioned it was my noble friend mentioned it was opposed by every one of the groups. And again, we took evidence from all these groups. The position is actually that they're neutral on it actually that they're neutral on it because their membership are split on it. So you take the Royal College of Nurses, the GPS, they're College of Nurses, the GPS, they're neutral. So it's not right to say that they oppose.
At the same time, it's not right to say that they support. And I've heard a number of times, noble Lords say that there's no groups that support it. And at the same time you say there's no groups that oppose it. The fact is
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that they all take a neutral part because their memberships are split. So that was, I understand, an interruption. I just want to say the fact is that it. But may I just the fact is that it. But may I just say, the fact is that none of the organisations which are going to organisations which are going to 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're going to have a better bill, that's what we are here to do. And I object to the fact that my time is being taken up trying to help. And then I'm told that somehow or other it's filibustering.
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My intervention was just to clarify that these organisations, including five Royal Colleges, the including five Royal Colleges, the British Association of Social Workers, all the list of all the organisations for on behalf of disabled people, many of them are neutral on the principle of assisted death. But on this bill assisted death. But on this bill there is no external organisation that will attest to the safety of the legislation. That is before us the legislation. That is before us that we are discussing today and as we have done on previous days, and I think that should be of concern
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to us all. Just respond. To many. Points have been made around the chamber today in relation to chamber today in relation to disability. Apparently, the most recent large survey, which was recent large survey, which was carried out by Opinium in February 2024 of nearly 11,000 respondents 2024 of nearly 11,000 respondents in this in the UK showed the general population was 75% general population was 75% supportive and 14% people opposed to to to this bill. And of those who had a disability, 78% were who had a disability, 78% were supportive and 14% opposed.
I think it's very important to put those figures on the record.
12:56
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
Well done. >> My Lords. >> I speak to amendments 88 and 89 in my name, and the reason I tabled in my name, and the reason I tabled these was based on my experience in my former career as an athlete, where I knew quite a significant number of men and women who had varying degrees of eating disorder. And I think in my own case, I think I probably had a disorderly eating behaviour rather than a diagnosed eating disorder. In terms of I very carefully managed and adjusted my eating in terms of trying to achieve my goals.
And if I can explain a little bit, as an athlete, you have a number of measurements. One of the things you have, your skinfolds measured several times a year. The amount of fat you have on your body is measured, and those figures are dependent on on having low results to keep your funding going as well as your performance measures. I competed in a sport where power to weight was really important, so my race weight as an adult female was 45kg, about the same weight as an 11 year old girl.
And I had to keep to that weight because I had a very expensive chair built around that weight. Also with it, the process of training, I vomited regularly. I can't remember a dentist that hasn't asked me actually very directly with no particular care around me. Are you bulimic? Because my teeth show signs of bulimia? If I was, I don't think that would have been the way to address it. But I think it's my personal experience that, and I've known I've had a very close friend who became very, very ill with anorexia.
And you're in this possible situation of trying to help and support and guide them through. And it's a really terrible thing for people to go through. And, my Lords, that's why I find it slightly extraordinary that we're still having to deal with the questions in your Lordships Chamber today, because the danger of this bill to people with eating disorders was first raised on October the 30th, 2024, when there were 18 experts, including leadership of the Royal College of Psychiatrists Eating Disorders faculty.
They signed a letter to the BMJ saying that the bill fails the public safety test. Since this, then the issue has been pointed out in oral evidence. The public Bill Committee by Chelsea Roth, discussed at Committee stage Another place, amended with support from the Commons Sponsor Report stage and raised by a coalition of eating disorder charities in two open letters as well and by the Complex Life and Death Decision Group at King's College London. But, my Lords, I still don't think it's 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.
I know last week we discussed in-person assessments. Several noble Lords noted that the noble member for Batley and Spen, Ms. Leadbeater, had identified zoom consultations as a potential problem and said she was considering an amendment, but the issue had never actually been resolved. And there's something analogous has happened with eating disorders. Everyone knows there's a problem, but nobody's found a way of fixing it. And I think this is significant, firstly, because it shows why this whole process is taking longer than it might have needed to.
And secondly, because it's unclear how the sponsor wants us to interpret amendment 87. The amendment appears to be intended to rule out someone from receiving an assisted death on account of anorexia. But last year, on May the 13th, noble and learned Lord Doyle Falconer told Newsnight that eating disorders charities were wrong in their concerns. In other words, the clause was already fine as it stood. Yet a month later, Miss Leadbeater accepted an amendment on voluntary stopping eating and drinking, and a spokesperson told the press this, along with the existing safeguards in the bill, would rule out people with anorexia falling under the scope of the bill.
But now it turns out that the clause needs amending yet again to make it safe. So for the third time, we've been told not to worry. So previous experience is just that we should not take anything for granted. Turning to amendment 88, in my name, this identifies another side of the question about voluntary stopping eating and drinking, and it's a somewhat complex point. But if noble Lords will bear with me, I think they'll see that it does raise a number of serious questions about whether the safeguards are watertight.
So voluntary stop and eat and drink, and to be clear, is a separate issue from anorexia. Anorexia is about not eating because of severe mental illness. Voluntary stopping eating. Drinking is a wholly deliberate decision to stop eating to hasten death, and it's sometimes used as a way to become eligible for assisted suicide. Campaigners in the US promote it as a way to meet the eligibility criteria for terminal illness laws, like the one proposed here. And as Chelsea Roth wrote last year in the New Statesman, and I quote in Oregon, a woman with early stage dementia recently starved herself into eligibility.
In Colorado, severe protein calorie malnutrition has been recorded as the primary qualifying terminal illness in 30 cases over three years, 18 in the last year alone. End quote that has ruled out by clause two, subsection two. As it stands, however, amendment 87 would actually weaken this protection as it only covers mental disorder and VSED. I'm going to use that for short is not a mental disorder. So whether accidentally or intentionally, this opens the way to cases like the Oregon. One of a woman who made herself eligible using VSED.
This is the reason for amendment 87. A and my Lords, while I think this group covers anorexia, we do have to be really careful. It covers other eating disorders. Well, anorexia is about 8% of eating disorders. So we need to think about bulimia and other conditions as well. But briefly returning to amendment 88, clause 19, subsection two says that if the coordinating doctor thinks the applicant will die within a month of the panel giving approval, then they can receive an assisted death within just 48 hours of that approval.
Presumably, the coordinating doctor will make this judgement based on when they see the applicant for the first assessment. So we can imagine the following situation. Someone makes a first declaration, and when the doctor carries out the first assessment, they find that the person meets the eligibility criteria partly because they have voluntary stopped eating drinking, which has accelerated the progress of their illness. So VSED is not the sole reason they qualify, but part of the set of interlinked reasons. So it is not ruled out by clause two, subsection two, as it stands and as discussed, amendment 87 could broaden this further so the person is eligible and a week later they're approved by the independent doctor.
Once that happens, they can be approved by the panel. The doctor decides, as soon as the panel is approved, that the person is likely to die within a month and 48 hours after the panel approval, they can be given lethal drugs. In other words, VSED has brought about an accelerated process and this develops a true two track system. Those who use VSED are eligible as long as it's not the cause of their meeting the criteria. Only the cause of the illness worsening. So this very much could be a possibility.
My Lords, cooling off periods are there for a reason, because people do change their minds and may need time to think it over and talk it over. In Oregon in 2023, 28% of assisted deaths took place in an expedited waiting period. The same problem could happen here, so we need to consider all the ramifications. My Lords, my amendment is a probing one, but I do not think the Bill, as it stands recognises the role of VSED. As it stands, we could have a situation where VSED is openly promoted by campaigners as a way to help ensure eligibility and secondly, to avoid a safeguard and get onto the fast
**** Possible New Speaker ****
track for an assisted death. My Lords, we've agreed noble Lords would benefit from a short Lords would benefit from a short lunch break. I think there's going to be some time before this group is finished, so this seems the most 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
**** Possible New Speaker ****
of the debate after lunch. The question is the debate on amendment 87 be adjourned. As many as are of that opinion will say content the contrary, not content.
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The contents have it. I beg to move that the Committee do now adjourn for 40 minutes. We do now adjourn for 40 minutes. We will therefore return to the bill at 1344.
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at 1344. The committee stands adjourned
And if I can explain a little bit, as an athlete, you have a number of measurements. One of the things you have, your skinfolds measured several times a year. The amount of fat you have on your body is measured, and those figures are dependent on on having low results to keep your funding going as well as your performance measures. I competed in a sport where power to weight was really important, so my race weight as an adult female was 45kg, about the same weight as an 11 year old girl.
And I had to keep to that weight because I had a very expensive chair built around that weight. Also with it, the process of training, I vomited regularly. I can't remember a dentist that hasn't asked me actually very directly with no particular care around me. Are you bulimic? Because my teeth show signs of bulimia? If I was, I don't think that would have been the way to address it. But I think it's my personal experience that, and I've known I've had a very close friend who became very, very ill with anorexia.
And you're in this possible situation of trying to help and support and guide them through. And it's a really terrible thing for people to go through. And, my Lords, that's why I find it slightly extraordinary that we're still having to deal with the questions in your Lordships Chamber today, because the danger of this bill to people with eating disorders was first raised on October the 30th, 2024, when there were 18 experts, including leadership of the Royal College of Psychiatrists Eating Disorders faculty.
They signed a letter to the BMJ saying that the bill fails the public safety test. Since this, then the issue has been pointed out in oral evidence. The public Bill Committee by Chelsea Roth, discussed at Committee stage Another place, amended with support from the Commons Sponsor Report stage and raised by a coalition of eating disorder charities in two open letters as well and by the Complex Life and Death Decision Group at King's College London. But, my Lords, I still don't think it's 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.
I know last week we discussed in-person assessments. Several noble Lords noted that the noble member for Batley and Spen, Ms. Leadbeater, had identified zoom consultations as a potential problem and said she was considering an amendment, but the issue had never actually been resolved. And there's something analogous has happened with eating disorders. Everyone knows there's a problem, but nobody's found a way of fixing it. And I think this is significant, firstly, because it shows why this whole process is taking longer than it might have needed to.
And secondly, because it's unclear how the sponsor wants us to interpret amendment 87. The amendment appears to be intended to rule out someone from receiving an assisted death on account of anorexia. But last year, on May the 13th, noble and learned Lord Doyle Falconer told Newsnight that eating disorders charities were wrong in their concerns. In other words, the clause was already fine as it stood. Yet a month later, Miss Leadbeater accepted an amendment on voluntary stopping eating and drinking, and a spokesperson told the press this, along with the existing safeguards in the bill, would rule out people with anorexia falling under the scope of the bill.
But now it turns out that the clause needs amending yet again to make it safe. So for the third time, we've been told not to worry. So previous experience is just that we should not take anything for granted. Turning to amendment 88, in my name, this identifies another side of the question about voluntary stopping eating and drinking, and it's a somewhat complex point. But if noble Lords will bear with me, I think they'll see that it does raise a number of serious questions about whether the safeguards are watertight.
So voluntary stop and eat and drink, and to be clear, is a separate issue from anorexia. Anorexia is about not eating because of severe mental illness. Voluntary stopping eating. Drinking is a wholly deliberate decision to stop eating to hasten death, and it's sometimes used as a way to become eligible for assisted suicide. Campaigners in the US promote it as a way to meet the eligibility criteria for terminal illness laws, like the one proposed here. And as Chelsea Roth wrote last year in the New Statesman, and I quote in Oregon, a woman with early stage dementia recently starved herself into eligibility.
In Colorado, severe protein calorie malnutrition has been recorded as the primary qualifying terminal illness in 30 cases over three years, 18 in the last year alone. End quote that has ruled out by clause two, subsection two. As it stands, however, amendment 87 would actually weaken this protection as it only covers mental disorder and VSED. I'm going to use that for short is not a mental disorder. So whether accidentally or intentionally, this opens the way to cases like the Oregon. One of a woman who made herself eligible using VSED.
This is the reason for amendment 87. A and my Lords, while I think this group covers anorexia, we do have to be really careful. It covers other eating disorders. Well, anorexia is about 8% of eating disorders. So we need to think about bulimia and other conditions as well. But briefly returning to amendment 88, clause 19, subsection two says that if the coordinating doctor thinks the applicant will die within a month of the panel giving approval, then they can receive an assisted death within just 48 hours of that approval.
Presumably, the coordinating doctor will make this judgement based on when they see the applicant for the first assessment. So we can imagine the following situation. Someone makes a first declaration, and when the doctor carries out the first assessment, they find that the person meets the eligibility criteria partly because they have voluntary stopped eating drinking, which has accelerated the progress of their illness. So VSED is not the sole reason they qualify, but part of the set of interlinked reasons. So it is not ruled out by clause two, subsection two, as it stands and as discussed, amendment 87 could broaden this further so the person is eligible and a week later they're approved by the independent doctor.
Once that happens, they can be approved by the panel. The doctor decides, as soon as the panel is approved, that the person is likely to die within a month and 48 hours after the panel approval, they can be given lethal drugs. In other words, VSED has brought about an accelerated process and this develops a true two track system. Those who use VSED are eligible as long as it's not the cause of their meeting the criteria. Only the cause of the illness worsening. So this very much could be a possibility.
My Lords, cooling off periods are there for a reason, because people do change their minds and may need time to think it over and talk it over. In Oregon in 2023, 28% of assisted deaths took place in an expedited waiting period. The same problem could happen here, so we need to consider all the ramifications. My Lords, my amendment is a probing one, but I do not think the Bill, as it stands recognises the role of VSED. As it stands, we could have a situation where VSED is openly promoted by campaigners as a way to help ensure eligibility and secondly, to avoid a safeguard and get onto the fast
**** Possible New Speaker ****
track for an assisted death. My Lords, we've agreed noble Lords would benefit from a short Lords would benefit from a short lunch break. I think there's going to be some time before this group is finished, so this seems the most 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
**** Possible New Speaker ****
of the debate after lunch. The question is the debate on amendment 87 be adjourned. As many as are of that opinion will say content the contrary, not content.
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The contents have it. I beg to move that the Committee do now adjourn for 40 minutes. We do now adjourn for 40 minutes. We will therefore return to the bill at 1344.
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at 1344. The committee stands adjourned
13:05
House Adjourned During Pleasure
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House Adjourned During Pleasure
It.
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Is in my. In my haste to make sure you've got some lunch, I actually adjourn the debate on actually adjourn the debate on amendment 87, the question before the House was actually on the amendment to amendment eight, the amendment to amendment eight, which was 87, which we will now
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Is in my. In my haste to make sure you've got some lunch, I actually adjourn the debate on actually adjourn the debate on amendment 87, the question before the House was actually on the amendment to amendment eight, the amendment to amendment eight, which was 87, which we will now
13:45
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
>> My Lords, I'm grateful to noble Lords for their contribution in this debate. Let me start by referring to amendment 87 table by my noble friend Lord Faulkner, who's the sponsor of the bill. This amendment would clarify the intention of the current clause two two, which is to prevent someone becoming eligible for an assisted death due to an eating disorder. Amendment 87 replaces clause two to 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.
And to this point, the noble Lord, Lord Harper, asked about interpretation. I hope that just those comments might be helpful because of course, the eligibility of those with eating disorders under this bill is actually a policy decision, not one for government. And I'm sure that my noble friend has heard the point that the noble Lord was making. This amendment, as is usual practice, has been drafted with the technical support of the government within the policy intent of the sponsor and the other place.
The amendment does exclude from the definition of terminally ill any illness or disease caused by the person not eating or drinking when not eating or drinking occurs as a result of a mental disorder. It also makes clear that this expressly covers cases of limited eating or drinking. With regard to amendment 87. In particular, given that it replaces clause two two if noble Lords accept it, a number of the other amendments in this group would, of course, fall away.
I'll now turn to more detailed comments as as usual, and amendments. The government considers has have major legal, technical or workability 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 Lady Baroness Finlay, would mean that those whose refusal of nutrition is due to a mental illness would not be considered terminally ill.
Under this bill, amendment 92, tabled by my noble friend Baroness 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, and the exclusion from eligibility could apply to a patient who refuses one standard medical treatment in favour of accepting an alternative medical treatment.
A refusal of standard medical treatment would mean a person would become ineligible forever, even where their refusal had no impact on their prognosis. Turning to amendment 101 table by the noble Lady Baroness Parminter, this would prevent people with physical effects or complications of a mental disorder from 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 and for avoidance of doubt, provision on top of another.
For avoidance of doubt provision which could lead to ambiguity about how the legislation should be interpreted. And I did hear the noble Lady say that she had a had been concerned about the drafting. So I did hear the noble Lady to that point. So I hope those comments will be helpful to her. Amendment 103, tabled by the noble Lady Baroness Fox, would remove from eligibility people who, because of the effect of a mental disorder, refuse life saving treatment and developed a terminal condition where these amendments limit eligibility for specific groups, they could give rise to legal challenge under article two or article eight, with 14 of the EC.
If such restrictions are not objectively and reasonably justified. As I have said previously, that is a matter for noble Lords to consider the amendments in that light, should
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they wish to. First of all, in relation to my
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First of all, in relation to my amendment 87, I detect the mood of the House is that I should put it the House is that I should put it into the bill. But subject to the amendment proposed by the Baroness, amendment proposed by the Baroness, Scotland and the Baroness Berger. So I'm minded unless anybody indicates the contrary, to let that indicates the contrary, to let that process go ahead. I do accept that in putting it in, there are those who would like to build on that going forward in report.
But I do think we should put it in now. Could I just deal very quickly with the other amendments in the group, first of all, amendment 88 Baroness Grey-Thompson leave out the word solely that.
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Sorry on that point. So I completely agree with him. And as I said, I for one would be very happy for it to go into the bill. The noble and learned Lord said he recognises there will be those that recognises there will be those that wanted to build on it at report. Can I just ask him if he can cover the point I made, which is, is he the point I made, which is, is he prepared to? Because obviously he'll have the support of of draft people and policy officials from people and policy officials from the department to help him craft something.
Is he does he recognise there's still a gap to deal with some other of these eating disorders? Is he going to do some work to bring forward some amendments, or will he expect that amendments, or will he expect that to come from others?
And to this point, the noble Lord, Lord Harper, asked about interpretation. I hope that just those comments might be helpful because of course, the eligibility of those with eating disorders under this bill is actually a policy decision, not one for government. And I'm sure that my noble friend has heard the point that the noble Lord was making. This amendment, as is usual practice, has been drafted with the technical support of the government within the policy intent of the sponsor and the other place.
The amendment does exclude from the definition of terminally ill any illness or disease caused by the person not eating or drinking when not eating or drinking occurs as a result of a mental disorder. It also makes clear that this expressly covers cases of limited eating or drinking. With regard to amendment 87. In particular, given that it replaces clause two two if noble Lords accept it, a number of the other amendments in this group would, of course, fall away.
I'll now turn to more detailed comments as as usual, and amendments. The government considers has have major legal, technical or workability 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 Lady Baroness Finlay, would mean that those whose refusal of nutrition is due to a mental illness would not be considered terminally ill.
Under this bill, amendment 92, tabled by my noble friend Baroness 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, and the exclusion from eligibility could apply to a patient who refuses one standard medical treatment in favour of accepting an alternative medical treatment.
A refusal of standard medical treatment would mean a person would become ineligible forever, even where their refusal had no impact on their prognosis. Turning to amendment 101 table by the noble Lady Baroness Parminter, this would prevent people with physical effects or complications of a mental disorder from 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 and for avoidance of doubt, provision on top of another.
For avoidance of doubt provision which could lead to ambiguity about how the legislation should be interpreted. And I did hear the noble Lady say that she had a had been concerned about the drafting. So I did hear the noble Lady to that point. So I hope those comments will be helpful to her. Amendment 103, tabled by the noble Lady Baroness Fox, would remove from eligibility people who, because of the effect of a mental disorder, refuse life saving treatment and developed a terminal condition where these amendments limit eligibility for specific groups, they could give rise to legal challenge under article two or article eight, with 14 of the EC.
If such restrictions are not objectively and reasonably justified. As I have said previously, that is a matter for noble Lords to consider the amendments in that light, should
**** Possible New Speaker ****
they wish to. First of all, in relation to my
**** Possible New Speaker ****
First of all, in relation to my amendment 87, I detect the mood of the House is that I should put it the House is that I should put it into the bill. But subject to the amendment proposed by the Baroness, amendment proposed by the Baroness, Scotland and the Baroness Berger. So I'm minded unless anybody indicates the contrary, to let that indicates the contrary, to let that process go ahead. I do accept that in putting it in, there are those who would like to build on that going forward in report.
But I do think we should put it in now. Could I just deal very quickly with the other amendments in the group, first of all, amendment 88 Baroness Grey-Thompson leave out the word solely that.
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Sorry on that point. So I completely agree with him. And as I said, I for one would be very happy for it to go into the bill. The noble and learned Lord said he recognises there will be those that recognises there will be those that wanted to build on it at report. Can I just ask him if he can cover the point I made, which is, is he the point I made, which is, is he prepared to? Because obviously he'll have the support of of draft people and policy officials from people and policy officials from the department to help him craft something.
Is he does he recognise there's still a gap to deal with some other of these eating disorders? Is he going to do some work to bring forward some amendments, or will he expect that amendments, or will he expect that to come from others?
13:52
Lord Falconer of Thoroton (Labour)
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Lord Falconer of Thoroton (Labour)
Two groups of eating disorders identified. First of all, the Baroness Finlay of Llandaff identified people who only eat one particular thing. I have experienced myself of Deuteriums and what the consequence may be. If you only eat fruit, and it may be very, very bad for you. Those who limit a particular intake are covered by amendment 87. There was a separate group, which is the bulimic group. Who would be who give rise, I think, to different sorts of problems.
I will consider the position of bulimics, but I do not want to create any expectation that would lead to any further amendments being proposed by me, but it may be that other people will propose them in the light of what I've said, in which case I will of course consider them, but I think they may be in a slightly different category.
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Would he consider the tide group? Because the eating disorders charities recognise that not only charities recognise that not only is this a really serious group, but that actually they do have a very high mortality rate.
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high mortality rate. Yes. Could we go on amendment 88, in the name of the number? Baroness in the name of the number? Baroness Grey-Thompson is an amendment to clause two two, which is going in the light of clause 87. Could I go to amendment 89, which is in the name of Lord Polak, but which the noble Lord, Lord MP, who's sadly not in his place, spoke to, and he wants to make ineligible those who, quote, withdraw medication, hydration or life sustaining devices.
As far as hydration is concerned, that's covered already by the amendment 87 that is coming in relation to withdrawing medication or life sustaining devices. I am not in favour of those changes because as I said in the first group, it is generally for the patient to decide what treatment to have. And if, for example, they do not wish to have a difficult further round of chemotherapy than they should be allowed to make that choice. If, for example, they have MND and they wish to be taken off the respirator, then they should be allowed to do that as well.
So unfortunately, I don't support those amendments. Could I go to paragraph 91, the Baroness Finlay of Llandaff amendment, where the refusal of nutrition is the result of mental illness? I think that's now covered by amendment 87, amendment 92, a person who would not otherwise meet the requirements of subsection one, that subsection one, 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 the previous group.
Whereas if it's if it's if it's a type one diabetes or dialysis case, then you don't make yourself eligible by refusing that. I don't think any further change is necessary in relation to that. Could I go to 101 which is in the name of Baroness Parminter? 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 11A and 11B. Well, that was what provoked and and and led to the change in 87.
And I appreciate not only that Baroness Parminter is the person responsible for the change, but also that she is supported our amendments as well. And then finally amendment 103, which is Baroness Fox of Buckley, where she's saying if you refuse treatment as a result of a mental illness, and then the refusal of treatment as a result of the mental illness then led you to be eligible again, I'm not in favour of that for two reasons. First of all, if you've refused treatment because of a mental illness, you wouldn't have a capacity to refuse treatment in the first place.
But suppose as a result of a mental illness, you ended up not getting treatment for something, and now, with complete capacity, your cancer is much, much worse than it would otherwise be. Should you be denied an assisted death if it's otherwise available.
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And in my view, you should not. So I'd like to move amendment 87
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So I'd like to move amendment 87 A the question is amendment 87 A as an amendment to 87 be agreed to, as an amendment to 87 be agreed to, as many as are of that opinion will say content the contrary not content. The contents have it. content. The contents have it. Amendment 87. The question is an amendment 87 as amended, be agreed to. As many as are of that opinion will say content the contrary not content.
The contents have it. Amendment 88 Baroness Grey-Thompson not moved. Amendment 89 Baroness Hooper Lord Polak not moved and amendment 90 Baroness Finlay not moved and 91 not moved. Amendment 92 Baroness Debbonaire not moved. Amendment 93 Baroness Fraser not moved. Amendment 94 Lord Taylor not moved. Amendment 95 Lord Carlile not moved 96 Lord Garnier not moved. Amendments 97 and 98 Baroness Grey-Thompson not moved. Amendment 99 Lord Hunt of Kings Heath not moved. Amendment 100 Lord Moylan not moved.
Amendment 101 Baroness Parminter not moved. Amendment 102 Lord Hunt of Kings Heath not moved. Amendment 103 Baroness Fox not moved. Amendment 104 Baroness Grey-Thompson moved 105 Lord Hunt of Kings Heath and 106 not moved. We now come to the group that begins by amendment 107, in the names of Lord Hunt of Kings Heath and Lord Rook, and I can't see either of them in the chamber. But the next amendment, which is quite considerable group is 108, and I do see Baroness O'Loan in her place.
So would she like to move this as the amendment to the. Or are you speaking on behalf of that I do apologise. Sorry, I didn't see you didn't read. So it is amendment 107. I'm grateful.
I will consider the position of bulimics, but I do not want to create any expectation that would lead to any further amendments being proposed by me, but it may be that other people will propose them in the light of what I've said, in which case I will of course consider them, but I think they may be in a slightly different category.
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Would he consider the tide group? Because the eating disorders charities recognise that not only charities recognise that not only is this a really serious group, but that actually they do have a very high mortality rate.
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high mortality rate. Yes. Could we go on amendment 88, in the name of the number? Baroness in the name of the number? Baroness Grey-Thompson is an amendment to clause two two, which is going in the light of clause 87. Could I go to amendment 89, which is in the name of Lord Polak, but which the noble Lord, Lord MP, who's sadly not in his place, spoke to, and he wants to make ineligible those who, quote, withdraw medication, hydration or life sustaining devices.
As far as hydration is concerned, that's covered already by the amendment 87 that is coming in relation to withdrawing medication or life sustaining devices. I am not in favour of those changes because as I said in the first group, it is generally for the patient to decide what treatment to have. And if, for example, they do not wish to have a difficult further round of chemotherapy than they should be allowed to make that choice. If, for example, they have MND and they wish to be taken off the respirator, then they should be allowed to do that as well.
So unfortunately, I don't support those amendments. Could I go to paragraph 91, the Baroness Finlay of Llandaff amendment, where the refusal of nutrition is the result of mental illness? I think that's now covered by amendment 87, amendment 92, a person who would not otherwise meet the requirements of subsection one, that subsection one, 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 the previous group.
Whereas if it's if it's if it's a type one diabetes or dialysis case, then you don't make yourself eligible by refusing that. I don't think any further change is necessary in relation to that. Could I go to 101 which is in the name of Baroness Parminter? 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 11A and 11B. Well, that was what provoked and and and led to the change in 87.
And I appreciate not only that Baroness Parminter is the person responsible for the change, but also that she is supported our amendments as well. And then finally amendment 103, which is Baroness Fox of Buckley, where she's saying if you refuse treatment as a result of a mental illness, and then the refusal of treatment as a result of the mental illness then led you to be eligible again, I'm not in favour of that for two reasons. First of all, if you've refused treatment because of a mental illness, you wouldn't have a capacity to refuse treatment in the first place.
But suppose as a result of a mental illness, you ended up not getting treatment for something, and now, with complete capacity, your cancer is much, much worse than it would otherwise be. Should you be denied an assisted death if it's otherwise available.
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And in my view, you should not. So I'd like to move amendment 87
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So I'd like to move amendment 87 A the question is amendment 87 A as an amendment to 87 be agreed to, as an amendment to 87 be agreed to, as many as are of that opinion will say content the contrary not content. The contents have it. content. The contents have it. Amendment 87. The question is an amendment 87 as amended, be agreed to. As many as are of that opinion will say content the contrary not content.
The contents have it. Amendment 88 Baroness Grey-Thompson not moved. Amendment 89 Baroness Hooper Lord Polak not moved and amendment 90 Baroness Finlay not moved and 91 not moved. Amendment 92 Baroness Debbonaire not moved. Amendment 93 Baroness Fraser not moved. Amendment 94 Lord Taylor not moved. Amendment 95 Lord Carlile not moved 96 Lord Garnier not moved. Amendments 97 and 98 Baroness Grey-Thompson not moved. Amendment 99 Lord Hunt of Kings Heath not moved. Amendment 100 Lord Moylan not moved.
Amendment 101 Baroness Parminter not moved. Amendment 102 Lord Hunt of Kings Heath not moved. Amendment 103 Baroness Fox not moved. Amendment 104 Baroness Grey-Thompson moved 105 Lord Hunt of Kings Heath and 106 not moved. We now come to the group that begins by amendment 107, in the names of Lord Hunt of Kings Heath and Lord Rook, and I can't see either of them in the chamber. But the next amendment, which is quite considerable group is 108, and I do see Baroness O'Loan in her place.
So would she like to move this as the amendment to the. Or are you speaking on behalf of that I do apologise. Sorry, I didn't see you didn't read. So it is amendment 107. I'm grateful.
13:59
Baroness Berger (Labour)
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Baroness Berger (Labour)
Thank you, my Lords. I rise to speak in support of amendments 107, speak in support of amendments 107, 108 and 109. I do so in in the names of my noble friends, Lord Lord Hunt of Kings Heath and Lord Lord Hunt of Kings Heath and Lord Rook. For who are unable to be with us today for good reasons. These amendments go to the heart of a amendments go to the heart of a question the House must answer honestly. What level of capacity is required for the state to assist a person to end their life? And, crucially, whether the existing framework of the Mental Capacity Act 2005 is sufficient for a decision that is irreversible, permanent and Final Amendment 107 addresses a specific but serious problem.
Section three. Part three 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. But 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 built into the bill.
This amendment therefore supplies section three, part three 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. The Mental Capacity Act, as we've heard on numerous occasions in this House and in the other House and in our numerous panel evidence sessions, was never designed to authorise state assistance in ending life. This matters because cognitive impairments affecting memory and retention are very common.
Functional cognitive disorders. Subjective cognitive decline, early dementia, acquired brain injury, stroke, multiple sclerosis, and learning disabilities all affect large numbers of people. Studies cited in the evidence show that over half of adults aged 40 to 79 report memory concerns, and dementia remains significantly underdiagnosed in primary care under the Mental Capacity Act. Such individuals are presumed to have capacity unless proven otherwise, and clinicians are required to take all practicable steps to support decision making.
In this context, that duty risks becoming a danger where a person cannot retain information, they are likely to rely heavily on others. Family members, carers, clinicians to rehearse and restate the decision for them. That creates vulnerability to influence, to authority and to pressure, whether intended or not. Amendment 107 closes off the possibility that someone who cannot retain information is nevertheless led, supported or nudged towards an assisted death that is not truly their own decision. Amendment 108 addresses an even clearer category of vulnerability.
It provides that a person who is already deprived of liberty under the Mental Capacity Act, act subject to guardianship, community treatment, hospital regimes or a welfare order should be conclusively regarded as lacking capacity for the purposes of assisted dying. These are not marginal cases. Deprivation of liberty safeguards exist precisely because the person is not free, and because the state recognises that they have a heightened vulnerability. And these are certainly issues that we've discussed on a previous Friday to allow someone who is detained, constrained or subject to welfare orders to request state assisted death would be a profound contradiction.
It would collapse the distinction between protection and permission. The evidence from other jurisdictions should give us pause. In Canada. Reviews by the Ontario. The Ontario Coroners Made Death Review Committee identified cases where people with dementia or delirium received assisted death during acute illness, with limited documentation of capacity and no meaningful opportunity to confirm their wishes. Experts concluded that that rigorous capacity and consent standards were not upheld. These are not isolated stories. They are warnings. Amendment 109 follows the same logic.
It reinforces the need for continuous, not momentary, capacity, and for a framework that errs firmly on the side of protecting those whose cognitive impairment places them at particular risk. I close with the considerations of one of our country's leading experts that we heard at the Lords Select Committee. It was so boring evidence about the limits of clinical certainty in this area, professor Martin Vernon told us that judging mental capacity can be extraordinarily difficult and at times impossible, particularly where illness, distress, medication and cognitive impairment interact.
He emphasised that fluctuating capacity is not a rare case, but extraordinarily common. Yet this bill relies heavily on assessments made at particular moments in time. My Lords, deciding to die is not like deciding to marry or consent to surgery or manage finances. Death cannot be revisited. The safeguards must therefore be qualitatively stronger. These amendments do not undermine autonomy. They protect it. They recognise that autonomy, without memory, without continuity and without liberty, is fragile and easily lost. If this House is to legislate for assisted dying, it must do so with the utmost care for those least able to protect themselves.
Amendments 107, 108, 109 are proportionate, humane and necessary, and I urge this House to
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support them. Lady sits down oh, I apologise.
**** Possible New Speaker ****
Thank you. Amendment proposed. Clause three, page two. Line 21 at end insert. Save that section 33 of end insert. Save that section 33 of the Mental Capacity Act 2005. Inability to make decisions shall
**** Possible New Speaker ****
Inability to make decisions shall not apply to assessments of capacity under this act. Thank you. It was an
**** Possible New Speaker ****
Thank you. It was an intervention, so I hope no lady will be able to apply. It was actually just a question because there's noble Lady herself said we did debate both deprivation and liberty and the Mental Capacity Act, and it's used quite extensively. I think it was the 14th of November. From my notes, and I believe the noble Lord, the sponsor, Lord Faulkner from that agreed to look at extra safeguards around deprivation of liberty and being aware that there's many items we're all hoping to get through in terms of the length of this debate, and obviously it'll be up to noble Lords to decide how much they want to put in, because we did cover these these areas to a large degree.
What is the noble Lady hoping in terms of the extensiveness of the debate this time, or is she hoping that we can refer back to that debate and move quite quickly to
**** Possible New Speaker ****
get the response from the sponsor? That's a question. I thank the Lord for his intervention. I endeavoured during intervention. I endeavoured during the course of my remarks to keep them brief, and I believe I did so in under five minutes at the point in under five minutes at the point of the amendments are very specific around the eligibility, which we around the eligibility, which we didn't discuss. We we talked about more broadly the concerns around the Mental Capacity Act, but not specifically in the context of specifically in the context of capacity.
We obviously listen very closely to the sponsor of the bill. In the course of his response to the early discussion and debate that we had, and certainly the points specifically raised in these amendments was not in any way addressed by the sponsor. So these are additional points beyond the principle and the wider concerns about people that are under deprivation of liberty, and those people that will be considered under the Mental Capacity Act. I think, you know, clearly, we've listened to the experts who have raised many concerns about the Mental Capacity Act.
The purpose of these amendments is, is in the context of eligibility, and I hope that the sponsor of the bill might give us a more colour and more and more detail about where he might Report stage, come forward with those amendments. But in the absence of them, I think this speaks to the concerns of many in this House, the absence of so far we've had you know, we've been in this place since the middle of November in Committee stage and the absence of anything so far coming forward on the Mental Capacity Act, on and on deprivation of liberty standards from the sponsor, we are therefore compelled to bring forward these amendments in order to raise and discuss the debate.
If they were to come forward, then that might enable us for future groups of amendments to withdraw them altogether. And maybe that
**** Possible New Speaker ****
will be the case. And I look forward to the sponsors response. In the light of that exchange,
**** Possible New Speaker ****
In the light of that exchange, if I if I indicate what my position is, we had a debate earlier on some is, we had a debate earlier on some weeks ago about the question of what about people who'd had their liberty deprived within the liberty deprived within the preceding 12 months. That would obviously include those who were still the subject of a doll order still the subject of a doll order or a doll application. And in the noble Baroness Amendment it refers to a number of other categories as well, which are similar and I think would be included.
I indicated there 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. And I've been in discussions with various people in the House in relation to that. And I'm seeking advice from officials and others in relation to it, so that I'll be able to bring forward proposals at report.
I hope that very much helps. The Baroness O'Loan. My noble friend Baroness
**** Possible New Speaker ****
Berger. Consequence for earlier debates. As Lord O'Neill Lord Markham has said, we do know the in the context of applications for assisted of applications for assisted suicide, the MC, the Mental Capacity Act, which is to be used for determining capacity, would for determining capacity, would permit an unwise decision. We've all agreed on that, even if driven by depression, loneliness or
Section three. Part three 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. But 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 built into the bill.
This amendment therefore supplies section three, part three 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. The Mental Capacity Act, as we've heard on numerous occasions in this House and in the other House and in our numerous panel evidence sessions, was never designed to authorise state assistance in ending life. This matters because cognitive impairments affecting memory and retention are very common.
Functional cognitive disorders. Subjective cognitive decline, early dementia, acquired brain injury, stroke, multiple sclerosis, and learning disabilities all affect large numbers of people. Studies cited in the evidence show that over half of adults aged 40 to 79 report memory concerns, and dementia remains significantly underdiagnosed in primary care under the Mental Capacity Act. Such individuals are presumed to have capacity unless proven otherwise, and clinicians are required to take all practicable steps to support decision making.
In this context, that duty risks becoming a danger where a person cannot retain information, they are likely to rely heavily on others. Family members, carers, clinicians to rehearse and restate the decision for them. That creates vulnerability to influence, to authority and to pressure, whether intended or not. Amendment 107 closes off the possibility that someone who cannot retain information is nevertheless led, supported or nudged towards an assisted death that is not truly their own decision. Amendment 108 addresses an even clearer category of vulnerability.
It provides that a person who is already deprived of liberty under the Mental Capacity Act, act subject to guardianship, community treatment, hospital regimes or a welfare order should be conclusively regarded as lacking capacity for the purposes of assisted dying. These are not marginal cases. Deprivation of liberty safeguards exist precisely because the person is not free, and because the state recognises that they have a heightened vulnerability. And these are certainly issues that we've discussed on a previous Friday to allow someone who is detained, constrained or subject to welfare orders to request state assisted death would be a profound contradiction.
It would collapse the distinction between protection and permission. The evidence from other jurisdictions should give us pause. In Canada. Reviews by the Ontario. The Ontario Coroners Made Death Review Committee identified cases where people with dementia or delirium received assisted death during acute illness, with limited documentation of capacity and no meaningful opportunity to confirm their wishes. Experts concluded that that rigorous capacity and consent standards were not upheld. These are not isolated stories. They are warnings. Amendment 109 follows the same logic.
It reinforces the need for continuous, not momentary, capacity, and for a framework that errs firmly on the side of protecting those whose cognitive impairment places them at particular risk. I close with the considerations of one of our country's leading experts that we heard at the Lords Select Committee. It was so boring evidence about the limits of clinical certainty in this area, professor Martin Vernon told us that judging mental capacity can be extraordinarily difficult and at times impossible, particularly where illness, distress, medication and cognitive impairment interact.
He emphasised that fluctuating capacity is not a rare case, but extraordinarily common. Yet this bill relies heavily on assessments made at particular moments in time. My Lords, deciding to die is not like deciding to marry or consent to surgery or manage finances. Death cannot be revisited. The safeguards must therefore be qualitatively stronger. These amendments do not undermine autonomy. They protect it. They recognise that autonomy, without memory, without continuity and without liberty, is fragile and easily lost. If this House is to legislate for assisted dying, it must do so with the utmost care for those least able to protect themselves.
Amendments 107, 108, 109 are proportionate, humane and necessary, and I urge this House to
**** Possible New Speaker ****
support them. Lady sits down oh, I apologise.
**** Possible New Speaker ****
Thank you. Amendment proposed. Clause three, page two. Line 21 at end insert. Save that section 33 of end insert. Save that section 33 of the Mental Capacity Act 2005. Inability to make decisions shall
**** Possible New Speaker ****
Inability to make decisions shall not apply to assessments of capacity under this act. Thank you. It was an
**** Possible New Speaker ****
Thank you. It was an intervention, so I hope no lady will be able to apply. It was actually just a question because there's noble Lady herself said we did debate both deprivation and liberty and the Mental Capacity Act, and it's used quite extensively. I think it was the 14th of November. From my notes, and I believe the noble Lord, the sponsor, Lord Faulkner from that agreed to look at extra safeguards around deprivation of liberty and being aware that there's many items we're all hoping to get through in terms of the length of this debate, and obviously it'll be up to noble Lords to decide how much they want to put in, because we did cover these these areas to a large degree.
What is the noble Lady hoping in terms of the extensiveness of the debate this time, or is she hoping that we can refer back to that debate and move quite quickly to
**** Possible New Speaker ****
get the response from the sponsor? That's a question. I thank the Lord for his intervention. I endeavoured during intervention. I endeavoured during the course of my remarks to keep them brief, and I believe I did so in under five minutes at the point in under five minutes at the point of the amendments are very specific around the eligibility, which we around the eligibility, which we didn't discuss. We we talked about more broadly the concerns around the Mental Capacity Act, but not specifically in the context of specifically in the context of capacity.
We obviously listen very closely to the sponsor of the bill. In the course of his response to the early discussion and debate that we had, and certainly the points specifically raised in these amendments was not in any way addressed by the sponsor. So these are additional points beyond the principle and the wider concerns about people that are under deprivation of liberty, and those people that will be considered under the Mental Capacity Act. I think, you know, clearly, we've listened to the experts who have raised many concerns about the Mental Capacity Act.
The purpose of these amendments is, is in the context of eligibility, and I hope that the sponsor of the bill might give us a more colour and more and more detail about where he might Report stage, come forward with those amendments. But in the absence of them, I think this speaks to the concerns of many in this House, the absence of so far we've had you know, we've been in this place since the middle of November in Committee stage and the absence of anything so far coming forward on the Mental Capacity Act, on and on deprivation of liberty standards from the sponsor, we are therefore compelled to bring forward these amendments in order to raise and discuss the debate.
If they were to come forward, then that might enable us for future groups of amendments to withdraw them altogether. And maybe that
**** Possible New Speaker ****
will be the case. And I look forward to the sponsors response. In the light of that exchange,
**** Possible New Speaker ****
In the light of that exchange, if I if I indicate what my position is, we had a debate earlier on some is, we had a debate earlier on some weeks ago about the question of what about people who'd had their liberty deprived within the liberty deprived within the preceding 12 months. That would obviously include those who were still the subject of a doll order still the subject of a doll order or a doll application. And in the noble Baroness Amendment it refers to a number of other categories as well, which are similar and I think would be included.
I indicated there 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. And I've been in discussions with various people in the House in relation to that. And I'm seeking advice from officials and others in relation to it, so that I'll be able to bring forward proposals at report.
I hope that very much helps. The Baroness O'Loan. My noble friend Baroness
**** Possible New Speaker ****
Berger. Consequence for earlier debates. As Lord O'Neill Lord Markham has said, we do know the in the context of applications for assisted of applications for assisted suicide, the MC, the Mental Capacity Act, which is to be used for determining capacity, would for determining capacity, would permit an unwise decision. We've all agreed on that, even if driven by depression, loneliness or
14:09
Baroness O'Loan (Crossbench)
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Baroness O'Loan (Crossbench)
by depression, loneliness or despair, we know that it would treat brief retention as information, as sufficient, even when the bill requires a clear, informed and settled wish. Even though we know in cases of dementia, 76% of patients who refused life saving treatment while delirious had no memory whatsoever of having done so 24 to 72 hours later, another found that more than 60% of patients who wished voiced to wish to die during a bad day had no recollection of it. When mood or cognition improved, people who cannot retain and consider information on their choice the day after making it won't be available, won't be able to avail of the cooling off period.
That period for contemplation about what is proposed. They'll then 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 MCA 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 capacity expressly includes making an unwise decision, even if this will be an irreversible and total self-harm.
If you simply read across the Mental Capacity Act, there's a duty on all the people carrying out assessments to seek to support the person, to have capacity to end their own life. That's Professor Alex Keenan Evans to the Lords select committee. We also know that it will rely on time specific capacity, despite the bill requiring consistency across all these stages from one to 7 or 8. I can't remember how many there are, but 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 which may not involve any consultation with the patient who is making the application, let alone a face to face engagement. And the bill purports to introduce a statutory framework for determining capacity, but in reality it does not do so because the MCA is designed to test when a person can't make a decision, not whether someone is capable of doing so. And I hope that the noble Lord noble and learned Lord Faulkner, will accept the intent of these clear and effective.
**** Possible New Speaker ****
The noble Baroness suggested. That the only interaction would be with the First Doctor. The noble with the First Doctor. The noble Baroness will be aware that clause 12 requires both doctors to examine 12 requires both doctors to examine and have discussions with the patient, and the noble Baroness will also be aware that under normal circumstances are not in every circumstance, the panel must every circumstance, the panel must speak to the patient unless there is a exceptional reason why they shouldn't.
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Those both qualified exceptions, my Lord. So I'll carry on. I think
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my Lord. So I'll carry on. I think now Lord Faulkner has. Exactly the same for the coordinating doctor and the independent doctor. So I'm not clear what. Perhaps you could explain to the House what's the distinction between the two that she's making?
**** Possible New Speaker ****
she's making? I will revert to the bill and come back to the noble Lord in due course. If I'm wrong, I apologise. course. If I'm wrong, I apologise. But the noble and learned Lord has committed to in your Lordships House to build special protection for those currently or recently subject to a deprivation of liberty. Order the matter raised by the noble Lord Lord Markham. But the detail hasn't emerged. And what will those specific protections be? Will it be an outright ban for those under dols or those in prison? For example, during Committee stage on the 16th of December, the noble and learned Lord said, where somebody has made an application that a person's liberty be taken away because they're seriously mentally ill or lack capacity, or a person has actually deprived being deprived of their liberty, again, special provision should be made.
And I know the noble and learned Lord has said he will make provision. But time is passing and we still don't have any indication what that provision might be. Previously, on behalf of the government, the noble Baroness, 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 noble Baroness, the Minister, what is the government's view as to the minimum protection which must be offered to those deprived of liberty and susceptible to suicidal ideation? If this bill is to be compliant with government's obligations under the Human Rights Act and the.
The presumption of capacity contained in the Bill may result in the acceptance of unwise decisions by those who have forgotten about them the very next day. We know that clinicians and practitioners want clarity and certainty. They don't want to be left repeatedly in situations in which they must exercise their discretion. All the professional bodies have told us this the risk of litigation, intervention by a regulator or the police 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 to carefully 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 Rudkin KC, confirm the act contains no such stipulation. It does not provide a higher threshold if the noble and learned Lord Woolf Faulkner believes that a higher threshold should should apply, surely he should accept amendment 115, which proposes to replace clause three, which refers to capacity in the Mental Capacity Act 2005 and about which my noble colleagues will speak, and with a new definition of capacity for the purpose of the decision to end your own life, or 116, which provides for a court based structure, or a combination of the two, which would place that requirement clearly on the face of the bill.
They're both very well drafted 115 and 116. They provide much greater clarity than the current clause in this bill. My Lords, it's usually necessary to have a rather greater capacity to make a will than to get married, which may perhaps be rather surprising. I'm concerned about two groups of people, those with intermittent dementia. So from time to time they appear to be entirely normal, and then the next day they cannot remember anything that's happened. But secondly, I'm concerned about people who are sectioned under the mental health legislation.
And there was a famous case some years ago where someone who was sectioned and it was intended in his best interests to amputate his leg, and he absolutely refused. He was allowed to have the capacity to have that refusal. And it wasn't, in the end, necessary to amputate his leg. Consequently, that is a group which I think is quite tricky as to whether or not they will be seen to have sufficient capacity under the Mental Capacity Act, when they will have been sectioned under the mental health legislation, and it would be extremely helpful if the noble and learned Lord Woolf Faulkner could in fact provide us before report with what he sees as the changes that might be achieved to give special status.
Because if he doesn't do that, we're going to spend a lot of time all over again on an issue that probably could be dealt with fairly quickly.
That period for contemplation about what is proposed. They'll then 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 MCA 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 capacity expressly includes making an unwise decision, even if this will be an irreversible and total self-harm.
If you simply read across the Mental Capacity Act, there's a duty on all the people carrying out assessments to seek to support the person, to have capacity to end their own life. That's Professor Alex Keenan Evans to the Lords select committee. We also know that it will rely on time specific capacity, despite the bill requiring consistency across all these stages from one to 7 or 8. I can't remember how many there are, but 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 which may not involve any consultation with the patient who is making the application, let alone a face to face engagement. And the bill purports to introduce a statutory framework for determining capacity, but in reality it does not do so because the MCA is designed to test when a person can't make a decision, not whether someone is capable of doing so. And I hope that the noble Lord noble and learned Lord Faulkner, will accept the intent of these clear and effective.
**** Possible New Speaker ****
The noble Baroness suggested. That the only interaction would be with the First Doctor. The noble with the First Doctor. The noble Baroness will be aware that clause 12 requires both doctors to examine 12 requires both doctors to examine and have discussions with the patient, and the noble Baroness will also be aware that under normal circumstances are not in every circumstance, the panel must every circumstance, the panel must speak to the patient unless there is a exceptional reason why they shouldn't.
**** Possible New Speaker ****
Those both qualified exceptions, my Lord. So I'll carry on. I think
**** Possible New Speaker ****
my Lord. So I'll carry on. I think now Lord Faulkner has. Exactly the same for the coordinating doctor and the independent doctor. So I'm not clear what. Perhaps you could explain to the House what's the distinction between the two that she's making?
**** Possible New Speaker ****
she's making? I will revert to the bill and come back to the noble Lord in due course. If I'm wrong, I apologise. course. If I'm wrong, I apologise. But the noble and learned Lord has committed to in your Lordships House to build special protection for those currently or recently subject to a deprivation of liberty. Order the matter raised by the noble Lord Lord Markham. But the detail hasn't emerged. And what will those specific protections be? Will it be an outright ban for those under dols or those in prison? For example, during Committee stage on the 16th of December, the noble and learned Lord said, where somebody has made an application that a person's liberty be taken away because they're seriously mentally ill or lack capacity, or a person has actually deprived being deprived of their liberty, again, special provision should be made.
And I know the noble and learned Lord has said he will make provision. But time is passing and we still don't have any indication what that provision might be. Previously, on behalf of the government, the noble Baroness, 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 noble Baroness, the Minister, what is the government's view as to the minimum protection which must be offered to those deprived of liberty and susceptible to suicidal ideation? If this bill is to be compliant with government's obligations under the Human Rights Act and the.
The presumption of capacity contained in the Bill may result in the acceptance of unwise decisions by those who have forgotten about them the very next day. We know that clinicians and practitioners want clarity and certainty. They don't want to be left repeatedly in situations in which they must exercise their discretion. All the professional bodies have told us this the risk of litigation, intervention by a regulator or the police 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 to carefully 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 Rudkin KC, confirm the act contains no such stipulation. It does not provide a higher threshold if the noble and learned Lord Woolf Faulkner believes that a higher threshold should should apply, surely he should accept amendment 115, which proposes to replace clause three, which refers to capacity in the Mental Capacity Act 2005 and about which my noble colleagues will speak, and with a new definition of capacity for the purpose of the decision to end your own life, or 116, which provides for a court based structure, or a combination of the two, which would place that requirement clearly on the face of the bill.
They're both very well drafted 115 and 116. They provide much greater clarity than the current clause in this bill. My Lords, it's usually necessary to have a rather greater capacity to make a will than to get married, which may perhaps be rather surprising. I'm concerned about two groups of people, those with intermittent dementia. So from time to time they appear to be entirely normal, and then the next day they cannot remember anything that's happened. But secondly, I'm concerned about people who are sectioned under the mental health legislation.
And there was a famous case some years ago where someone who was sectioned and it was intended in his best interests to amputate his leg, and he absolutely refused. He was allowed to have the capacity to have that refusal. And it wasn't, in the end, necessary to amputate his leg. Consequently, that is a group which I think is quite tricky as to whether or not they will be seen to have sufficient capacity under the Mental Capacity Act, when they will have been sectioned under the mental health legislation, and it would be extremely helpful if the noble and learned Lord Woolf Faulkner could in fact provide us before report with what he sees as the changes that might be achieved to give special status.
Because if he doesn't do that, we're going to spend a lot of time all over again on an issue that probably could be dealt with fairly quickly.
14:18
The Lord Bishop of Newcastle (Bishops)
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The Lord Bishop of Newcastle (Bishops)
Like to speak to amendment 108, to which the right reverend Prelate, the Bishop of Lincoln, has added his name. He regrets that he cannot his name. He regrets that he cannot be in his place today, as he is interested in this amendment as lead bishop for the last community lead bishop for the last community in the UK, with the Church of England, last strives to provide a positive and inclusive residential community in which adults with and those without learning disabilities are able to live and grow together.
Health inequalities come into focus for much of this bill, and as we heard during 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 deaths of individuals with learning disabilities in 2023 were linked to avoidable, treatable, or preventable causes. This is 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, and I quote, 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.
End of quote. 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, and this is closely linked to capacity. It is clear that additional protections are needed for this group, and that is why due consideration should be paid to this particular amendment.
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We apologise for the first time. I've spoken in spoken in this bill. I added my name to amendment 115, I added my name to amendment 115, in the name of my noble friend Baroness Finlay. My concern, as other noble Lords have already told other noble Lords have already told the House, is the Mental Capacity Act has the presumption that, if in doubt, the doctors making the assessment of the patient's mental assessment of the patient's mental capacity have to assume they have the capacity, unless proved otherwise.
And, as other nobles has
Health inequalities come into focus for much of this bill, and as we heard during 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 deaths of individuals with learning disabilities in 2023 were linked to avoidable, treatable, or preventable causes. This is 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, and I quote, 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.
End of quote. 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, and this is closely linked to capacity. It is clear that additional protections are needed for this group, and that is why due consideration should be paid to this particular amendment.
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We apologise for the first time. I've spoken in spoken in this bill. I added my name to amendment 115, I added my name to amendment 115, in the name of my noble friend Baroness Finlay. My concern, as other noble Lords have already told other noble Lords have already told the House, is the Mental Capacity Act has the presumption that, if in doubt, the doctors making the assessment of the patient's mental assessment of the patient's mental capacity have to assume they have the capacity, unless proved otherwise.
And, as other nobles has
14:20
Viscount Colville of Culross (Crossbench)
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Viscount Colville of Culross (Crossbench)
otherwise. And, as other nobles has also said, if the patient deciding whether to go into a residential home or what to do about their financial affairs, that's fine. But I am convinced that the terminally ill patient should have to prove 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 patients have the mental capacity to make such a huge decision, and amendment 115 sets out a list of tests to help the doctor come to that conclusion.
Point out the importance of the changes to the bill. Put forward an amendment 115. Noble Lords have only to look at jurisdictions where the default position is presumption of mental capacity. Canada has already been raised by the noble Lady Lady Burger, with very good reason. In some provinces, like Quebec, 8% of all deaths are by assisted dying. And in Vancouver Island, which has lamentable palliative care, 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 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's called in Canada, even when they are confused about the implications of their 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 investigation was undertaken to determine if this was delirium and on top of the dementia or worsening dementia during the admission and before the 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. Said a maid team was called. They 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 and he told her he wanted hospice care and wanted palliative treatment.
She concluded that he could not differentiate between being sent to hospice for palliative care, palliative care, or having lethal injection to immediately end his life. But the maid team still assumed he had the mental capacity to go ahead with his first decision to have assisted dying. And when they asked him subsequently whether he wanted medication to help die, he agreed to it. Maid was carried out shortly afterwards. I would like this bill to ensure that there is no confusion about whether those, those terminally ill patients really do have the capacity needed for this huge decision.
My Lords, may I suggest that amendment one, one, five, Subclauses one and two, which reversed the presumption of mental capacity, will prove a much better safeguard. I would also like to 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 which the Minister and the other place said the government was silent. Subsection 66G of amendment to 115 states that the self-administration of such a substance is not a medical treatment for terminal illness, but a personal choice concerning life and death.
I know that these amendments to clause five, which, if accepted, will have the same effect, but I'd like to argue that it would be a belt and braces to have the concept that a doctor cannot, unprompted, raise the option of assisted dying in the mental health mental capacity clause of the bill. My Lords, it's important that the request for assisted 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 health care professionals are duty bound to raise assisted dying as an option for any patient admitted to hospital who suffer from a condition which makes them eligible for Maid.
I spoke to the doctor, the Canadian patient who was found to be eligible for Maid, and he went into hospital each each medical profession who visited him offered the option of maid alongside the option of drugs to alleviate their condition. This meant that on the first day of going into hospital, he was offered maid six times by six different medical professionals. Each medical medic was aware that if they didn't 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 once the eligibility for Maid in Canada. Obviously, the eligibility for Maid in Canada is very different from that proposed in this 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. This 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.
My Lords, I hope these this this amendment will be accepted. It will provide safety rails for patients eligible for
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assisted dying. My my Lord Sandhurst very
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My my Lord Sandhurst very grateful to Noble Viscount Viscount Colville for having spoken so 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 eminent national expert on mental capacity law and practice, Professor Alex Ruck-keene. Cosi.
Point out the importance of the changes to the bill. Put forward an amendment 115. Noble Lords have only to look at jurisdictions where the default position is presumption of mental capacity. Canada has already been raised by the noble Lady Lady Burger, with very good reason. In some provinces, like Quebec, 8% of all deaths are by assisted dying. And in Vancouver Island, which has lamentable palliative care, 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 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's called in Canada, even when they are confused about the implications of their 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 investigation was undertaken to determine if this was delirium and on top of the dementia or worsening dementia during the admission and before the 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. Said a maid team was called. They 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 and he told her he wanted hospice care and wanted palliative treatment.
She concluded that he could not differentiate between being sent to hospice for palliative care, palliative care, or having lethal injection to immediately end his life. But the maid team still assumed he had the mental capacity to go ahead with his first decision to have assisted dying. And when they asked him subsequently whether he wanted medication to help die, he agreed to it. Maid was carried out shortly afterwards. I would like this bill to ensure that there is no confusion about whether those, those terminally ill patients really do have the capacity needed for this huge decision.
My Lords, may I suggest that amendment one, one, five, Subclauses one and two, which reversed the presumption of mental capacity, will prove a much better safeguard. I would also like to 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 which the Minister and the other place said the government was silent. Subsection 66G of amendment to 115 states that the self-administration of such a substance is not a medical treatment for terminal illness, but a personal choice concerning life and death.
I know that these amendments to clause five, which, if accepted, will have the same effect, but I'd like to argue that it would be a belt and braces to have the concept that a doctor cannot, unprompted, raise the option of assisted dying in the mental health mental capacity clause of the bill. My Lords, it's important that the request for assisted 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 health care professionals are duty bound to raise assisted dying as an option for any patient admitted to hospital who suffer from a condition which makes them eligible for Maid.
I spoke to the doctor, the Canadian patient who was found to be eligible for Maid, and he went into hospital each each medical profession who visited him offered the option of maid alongside the option of drugs to alleviate their condition. This meant that on the first day of going into hospital, he was offered maid six times by six different medical professionals. Each medical medic was aware that if they didn't 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 once the eligibility for Maid in Canada. Obviously, the eligibility for Maid in Canada is very different from that proposed in this 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. This 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.
My Lords, I hope these this this amendment will be accepted. It will provide safety rails for patients eligible for
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assisted dying. My my Lord Sandhurst very
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My my Lord Sandhurst very grateful to Noble Viscount Viscount Colville for having spoken so 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 eminent national expert on mental capacity law and practice, Professor Alex Ruck-keene. Cosi.
14:25
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
This amendment aims to provide the clarity for doctors who are going clarity for doctors who are going to make the decisions as gatekeepers on the process. The amendment is necessary for two reasons the mental and let us remember that the Mental Capacity remember that the Mental Capacity Act was written to prevent someone doing something to you that you did not consent to, and when you were unable to decide whether or not somebody could do something to you, then you would fall into the best interest decision framework.
But that will never apply in this situation. So why is this amendment necessary? First, to comply with our obligations under the ECHR? And the second is 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 does not create a different process, but clarifies that the point made in the letter from Sir Chris Whitty, following his evidence, is adhered to, and that said, there is a clear need to have capacity for a 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. My Lords, we must not lose sight of the fact that the decision to take one's life is the most momentous decision, is irreversible, and therefore requires a higher standard than the myriad of other decisions that people take in the context of health and social care or finance.
My Lords, the state's obligations under article two of the UK 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 three, as tabled, discharges the state's obligations by ensuring proper consideration, their capacity and that they have a full understanding of what the receipt of assistance in dying involves.
But, my Lords, the MCHLG 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. The amendment 115 maintains the test of capacity with which practitioners are familiar, but enables them to apply that test within the framework of the Bill. It therefore does not constitute a further hurdle, but an appropriate framing.
It borrows language from the MCA where it's appropriate, as in Subclause two language that is familiar to anyone who has used the Mental Capacity Act. Like other amendments in this group, it removes the inherent dangers of the presumption of capacity, which have
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already been spoken to by others. Is it.
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Is it. The Baroness Finlay's point that if we use the provisions of the Mental Capacity Act to determine capacity for assisted dying, we are breaching the. Which I think is
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what she's saying. The Noble and learned law is
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The Noble and learned law is correct in that that has been a challenge put forward that as the bill is currently written, it may be and that this amendment 115 would correct that. I'm sorry. Like other amendments in this group, amendment 115 removes the inherent dangers of the presumption of capacity that others have spoken of. That is, there is unfortunately clear evidence that the MCA is variably applied. Margaret Flynn, now chair of the National National Mental Capacity Forum and who succeeded me in that role, has pointed out that there is, unfortunately, an enduring lack of awareness and a lack of understanding since the House of Lords Select Committee post-legislative Scrutiny Report of 2014, the National Institute of Health Research in 2022 found evidence highlighting several aspects of the way that assessments are conducted which are not compliant with the MCA and the Care Quality Commission.
In 2024, a decade after the House of Lords report continued to find a lack of understanding of the MCA among providers, as did the Difficult Cases review in 2023, as published in the Medical Law Review. This amendment also provides overall protection in six G, specifying that the self-administration of a substance to end one's own life is not a medical treatment for that terminal illness, but a personal choice concerning life and death, as has already been explained so well by the noble Viscount Viscount Colville.
As in other amendments in this group, it is specified in 117 that there is no presumption of a person's capacity, no duty to support a person, to have capacity to end their own life, thereby removing the risk of coercive support, and recognises in seven C the reality that the conclusion from such an assessment must be determined on the balance of probabilities. It recognises the reality of an element of doubt. This becomes particularly important when we think about patients with frontal lobe disorders.
And five C addresses that because these are people who can appear to have complete capacity until you look at their ability to understand, retain and understand the implications of their decision for themselves and others. Frontal lobe disorders can be very, very difficult to detect. I would also remind the House that section 62 of the Mental Capacity Act of 2005 states the limits to the scope of the act, that nothing in this act is to be taken to affect the law relating to murder or manslaughter, or the operation of the Suicide Act 1961.
This amendment, working with the framework of the Mental Capacity Act, makes it easier for those undertaking assessments, minimises the chance of confusion as to the application of the framework being proposed to the very many decisions about capacity and best interests that are taken more broadly, and it avoids difficult questions such as how to manage doubts about capacity, particularly if the impairment or disturbance in the functioning of the mind or brain is not clearly identifiable. It allows elements of doubt to be explored, and recognises that this bill requires a person to have a settled wish to end their own life, and therefore that must be consistent over time, whereas the Mental Capacity Act at the moment is only specific to a specific decision at a specific time, but does not require the continuity.
My Lords, clause three in the Bill is absolutely critical, and I hope that the noble and learned Lord Doyle Faulkner will accept a replacement clause to this bill that brings together the different areas of expertise evident from all those who have amendments in this group, and that he will recognise the expertise that has gone in to drafting this amendment, which I was grateful to receive and to table.
But that will never apply in this situation. So why is this amendment necessary? First, to comply with our obligations under the ECHR? And the second is 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 does not create a different process, but clarifies that the point made in the letter from Sir Chris Whitty, following his evidence, is adhered to, and that said, there is a clear need to have capacity for a 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. My Lords, we must not lose sight of the fact that the decision to take one's life is the most momentous decision, is irreversible, and therefore requires a higher standard than the myriad of other decisions that people take in the context of health and social care or finance.
My Lords, the state's obligations under article two of the UK 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 three, as tabled, discharges the state's obligations by ensuring proper consideration, their capacity and that they have a full understanding of what the receipt of assistance in dying involves.
But, my Lords, the MCHLG 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. The amendment 115 maintains the test of capacity with which practitioners are familiar, but enables them to apply that test within the framework of the Bill. It therefore does not constitute a further hurdle, but an appropriate framing.
It borrows language from the MCA where it's appropriate, as in Subclause two language that is familiar to anyone who has used the Mental Capacity Act. Like other amendments in this group, it removes the inherent dangers of the presumption of capacity, which have
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already been spoken to by others. Is it.
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Is it. The Baroness Finlay's point that if we use the provisions of the Mental Capacity Act to determine capacity for assisted dying, we are breaching the. Which I think is
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what she's saying. The Noble and learned law is
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The Noble and learned law is correct in that that has been a challenge put forward that as the bill is currently written, it may be and that this amendment 115 would correct that. I'm sorry. Like other amendments in this group, amendment 115 removes the inherent dangers of the presumption of capacity that others have spoken of. That is, there is unfortunately clear evidence that the MCA is variably applied. Margaret Flynn, now chair of the National National Mental Capacity Forum and who succeeded me in that role, has pointed out that there is, unfortunately, an enduring lack of awareness and a lack of understanding since the House of Lords Select Committee post-legislative Scrutiny Report of 2014, the National Institute of Health Research in 2022 found evidence highlighting several aspects of the way that assessments are conducted which are not compliant with the MCA and the Care Quality Commission.
In 2024, a decade after the House of Lords report continued to find a lack of understanding of the MCA among providers, as did the Difficult Cases review in 2023, as published in the Medical Law Review. This amendment also provides overall protection in six G, specifying that the self-administration of a substance to end one's own life is not a medical treatment for that terminal illness, but a personal choice concerning life and death, as has already been explained so well by the noble Viscount Viscount Colville.
As in other amendments in this group, it is specified in 117 that there is no presumption of a person's capacity, no duty to support a person, to have capacity to end their own life, thereby removing the risk of coercive support, and recognises in seven C the reality that the conclusion from such an assessment must be determined on the balance of probabilities. It recognises the reality of an element of doubt. This becomes particularly important when we think about patients with frontal lobe disorders.
And five C addresses that because these are people who can appear to have complete capacity until you look at their ability to understand, retain and understand the implications of their decision for themselves and others. Frontal lobe disorders can be very, very difficult to detect. I would also remind the House that section 62 of the Mental Capacity Act of 2005 states the limits to the scope of the act, that nothing in this act is to be taken to affect the law relating to murder or manslaughter, or the operation of the Suicide Act 1961.
This amendment, working with the framework of the Mental Capacity Act, makes it easier for those undertaking assessments, minimises the chance of confusion as to the application of the framework being proposed to the very many decisions about capacity and best interests that are taken more broadly, and it avoids difficult questions such as how to manage doubts about capacity, particularly if the impairment or disturbance in the functioning of the mind or brain is not clearly identifiable. It allows elements of doubt to be explored, and recognises that this bill requires a person to have a settled wish to end their own life, and therefore that must be consistent over time, whereas the Mental Capacity Act at the moment is only specific to a specific decision at a specific time, but does not require the continuity.
My Lords, clause three in the Bill is absolutely critical, and I hope that the noble and learned Lord Doyle Faulkner will accept a replacement clause to this bill that brings together the different areas of expertise evident from all those who have amendments in this group, and that he will recognise the expertise that has gone in to drafting this amendment, which I was grateful to receive and to table.
14:34
Baroness Hollins (Crossbench)
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Baroness Hollins (Crossbench)
It's a pleasure to follow my noble friend who has presented a different approach to assessing capacity. I was a member of the capacity. I was a member of the Post-legislative Post-legislative Scrutiny Committee for the Mental Capacity Act, and both in my professional capacity as a learning disability psychiatrist and as a family carer, I have observed the misapplication of this act on rather too many occasions. It's quite a complicated act and it is often misunderstood. I've got serious concerns about its applicability and appropriateness for this purpose.
I recently co-authored an editorial on this subject in the BMJ journal. Supportive and Palliative Care. My amendments one, one seven and 892 propose a bespoke decision making framework, a 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 right hon. Member Daniel Francis in the other place, and I briefly quote him, he said he's a parent of a daughter with a learning disability.
And he 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. He said that the Mental Capacity Act 2005 was not written for this scenario. As a parent myself, I share. I completely identify with what he said. I and I worry 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.
I think they should probably not be eligible. For example, they might mask the lack of understanding. If you ask my son if he wants to do something and if he understands it, he will be delighted to say that he does when I know he hasn't got a clue. OK, because he wants to be consulted and invited and to participate and to have the same opportunities as everybody else. When he hasn't got the first understanding of what actually he is being offered.
That's the reality of living day by day with somebody who doesn't understand. And it's really difficult to know. My research in looking at the Netherlands data, we found a number of people, quite a significant number of people who've been offered euthanasia and been euthanised, for whom? For whom a capacity assessment had not been done, certainly not by anybody who actually had any experience of working with neurodiverse people. This is just not acceptable. The Capacity Act, a mental capacity Act, was designed to support and protect people when they lack decision making capacity.
Conceptually, it's 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, begins from a presumption of capacity, and only if there's 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's no such thing as being capacity or incapacitance, and the bill as written requires the capacity to be demonstrated. But this contradicts the presumption of capacity in the act.
It creates a legal inconsistency, and 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.
Judgements are influenced by the assessors values, the context and the relationship with the person being assessed, and 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 as 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 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. My Lords, near the end of life. Cognitive impairment, of course, is common and undermines genuine decision making capacity. The 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 or impairment, published in the American Journal of Geriatric Psychiatry, found that over half of the patients had significant, previously undetected cognitive impairment on formal neuropsychological testing.
But another study in the same journal 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 4 in 5 4 in 5 showing impairment in reasoning. Importantly, there was there was poor agreement between the physician's judgement of capacity compared with more structured neurocognitive testing. So these and other studies show that evidence based structured assessments are essential in end of life contexts for decisions with irreversible consequences.
It's inappropriate for the bill to require psychiatrists to assess capacity. We are trained to diagnose and treat mental illness, as well as to prevent suicide, and there's no requirement for expertise in assessing decision making capacity or detecting cognitive impairment in terminal illness. In the general psychiatry speciality curriculum. So requiring psychiatrists to confirm capacity in assisted dying meets, treating a wish to end one's own life as an autonomous and valid choice in one context, whilst continuing to regard it as a symptom of mental illness in another.
What a confusing position to find oneself in. Other professionals such as practitioners. 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, My Lords, the Mental Capacity Act and the current approach to capacity in this bill are not fit for purpose, which is why I have proposed a different approach. Obviously, this would require expert development and testing followed speak in favour of my amendment 11011 ten.
Be it disapplied section three two.
I recently co-authored an editorial on this subject in the BMJ journal. Supportive and Palliative Care. My amendments one, one seven and 892 propose a bespoke decision making framework, a 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 right hon. Member Daniel Francis in the other place, and I briefly quote him, he said he's a parent of a daughter with a learning disability.
And he 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. He said that the Mental Capacity Act 2005 was not written for this scenario. As a parent myself, I share. I completely identify with what he said. I and I worry 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.
I think they should probably not be eligible. For example, they might mask the lack of understanding. If you ask my son if he wants to do something and if he understands it, he will be delighted to say that he does when I know he hasn't got a clue. OK, because he wants to be consulted and invited and to participate and to have the same opportunities as everybody else. When he hasn't got the first understanding of what actually he is being offered.
That's the reality of living day by day with somebody who doesn't understand. And it's really difficult to know. My research in looking at the Netherlands data, we found a number of people, quite a significant number of people who've been offered euthanasia and been euthanised, for whom? For whom a capacity assessment had not been done, certainly not by anybody who actually had any experience of working with neurodiverse people. This is just not acceptable. The Capacity Act, a mental capacity Act, was designed to support and protect people when they lack decision making capacity.
Conceptually, it's 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, begins from a presumption of capacity, and only if there's 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's no such thing as being capacity or incapacitance, and the bill as written requires the capacity to be demonstrated. But this contradicts the presumption of capacity in the act.
It creates a legal inconsistency, and 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.
Judgements are influenced by the assessors values, the context and the relationship with the person being assessed, and 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 as 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 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. My Lords, near the end of life. Cognitive impairment, of course, is common and undermines genuine decision making capacity. The 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 or impairment, published in the American Journal of Geriatric Psychiatry, found that over half of the patients had significant, previously undetected cognitive impairment on formal neuropsychological testing.
But another study in the same journal 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 4 in 5 4 in 5 showing impairment in reasoning. Importantly, there was there was poor agreement between the physician's judgement of capacity compared with more structured neurocognitive testing. So these and other studies show that evidence based structured assessments are essential in end of life contexts for decisions with irreversible consequences.
It's inappropriate for the bill to require psychiatrists to assess capacity. We are trained to diagnose and treat mental illness, as well as to prevent suicide, and there's no requirement for expertise in assessing decision making capacity or detecting cognitive impairment in terminal illness. In the general psychiatry speciality curriculum. So requiring psychiatrists to confirm capacity in assisted dying meets, treating a wish to end one's own life as an autonomous and valid choice in one context, whilst continuing to regard it as a symptom of mental illness in another.
What a confusing position to find oneself in. Other professionals such as practitioners. 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, My Lords, the Mental Capacity Act and the current approach to capacity in this bill are not fit for purpose, which is why I have proposed a different approach. Obviously, this would require expert development and testing followed speak in favour of my amendment 11011 ten.
Be it disapplied section three two.
14:41
Baroness Lawlor (Conservative)
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Baroness Lawlor (Conservative)
Of the Mental Capacity. >> Act, which in effect allows the person to be regarded as able to make a decision for himself if he is able to understand an explanation given to him in a way that is appropriate to his circumstances, and as it says, using simple language, visual aids or any other means, it would also disapply my amendment section three three as the noble Lord Lord Hanson amendment 107 proposes, which allows someone who retains information relevant to the decision only for a short period to disapply that, and so ably discussed by Baroness Berger.
But here I will focus on my additional amendment to Disapply section three two. In doing so, I bear in mind the aims of the MCA 2005 act, designed to empower people to make decisions about their life, including their healthcare, their treatment, and stressing that there is the world of a difference between deciding against a course of continued, often physically difficult and stressful treatment, and deliberately deciding to take a lethal substance to certain and sometimes brutal suicide, deliberately to 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, are all potential survival with excruciating pain. As we've heard in committee, the finality of such an irreversible decision, the questions it raises for your family and friends, the implications for your children and grandchildren and for your siblings, the example and precedent it sets for young and old alike, and the moral consequences for our society as a whole, and indeed, one which will chip away the foundations of the support we rightly give suicide prevention and people suffering from a terminal illness who want palliative support.
My Lords, these are complex questions, as is each one of the implications raised. Giving a downsized, simplistic version of the information judged to be appropriate to someone's circumstances may simplify the information so much 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 the person is judged to have capacity for so momentous a decision as taking their own life.
I asked the noble and learned Lord, the sponsor, to think again about the suitability of the Mental Capacity Act, and we've had alternative proposals from two very learned consultant doctors, one in palliative care and the other in psych, which would offer a substitute. But autonomy, I think, is if you bear with me. Misused in this sense, it is not therefore in the proper and only and clear, useful sense of the word. And I also wonder in this frame whether the word choice is being misused.
If choice, that of self-destruction, is being foisted on someone who is in no position really to choose. And we have heard of Canadian examples. And I recall another Canadian example, which is really keeps coming back to the papers of somebody who is suffering a disease, who is in Canada and who is constantly asked, will he go for assisted suicide? And there is a certain amount of torture involved in that case, because the poor man, Mr. Foley, who needs medication to keep him able to see, can't see without the medication and that was withdrawn temporarily.
And these are really awful cases where people who have capacity are being neglected. Their decisions to take a decision to keep their life is being neglected in some systems. And we are not sure that the Mental Capacity Act is the best way of judging capacity in this case. And we want to and this bill goes along with it. So I ask the noble Lord to think again. There have been amendments to Disapply three two and three three of the Mental Capacity Act for this purpose, and we have heard very good proposals of alternative.
And surely something can be worked out.
But here I will focus on my additional amendment to Disapply section three two. In doing so, I bear in mind the aims of the MCA 2005 act, designed to empower people to make decisions about their life, including their healthcare, their treatment, and stressing that there is the world of a difference between deciding against a course of continued, often physically difficult and stressful treatment, and deliberately deciding to take a lethal substance to certain and sometimes brutal suicide, deliberately to 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, are all potential survival with excruciating pain. As we've heard in committee, the finality of such an irreversible decision, the questions it raises for your family and friends, the implications for your children and grandchildren and for your siblings, the example and precedent it sets for young and old alike, and the moral consequences for our society as a whole, and indeed, one which will chip away the foundations of the support we rightly give suicide prevention and people suffering from a terminal illness who want palliative support.
My Lords, these are complex questions, as is each one of the implications raised. Giving a downsized, simplistic version of the information judged to be appropriate to someone's circumstances may simplify the information so much 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 the person is judged to have capacity for so momentous a decision as taking their own life.
I asked the noble and learned Lord, the sponsor, to think again about the suitability of the Mental Capacity Act, and we've had alternative proposals from two very learned consultant doctors, one in palliative care and the other in psych, which would offer a substitute. But autonomy, I think, is if you bear with me. Misused in this sense, it is not therefore in the proper and only and clear, useful sense of the word. And I also wonder in this frame whether the word choice is being misused.
If choice, that of self-destruction, is being foisted on someone who is in no position really to choose. And we have heard of Canadian examples. And I recall another Canadian example, which is really keeps coming back to the papers of somebody who is suffering a disease, who is in Canada and who is constantly asked, will he go for assisted suicide? And there is a certain amount of torture involved in that case, because the poor man, Mr. Foley, who needs medication to keep him able to see, can't see without the medication and that was withdrawn temporarily.
And these are really awful cases where people who have capacity are being neglected. Their decisions to take a decision to keep their life is being neglected in some systems. And we are not sure that the Mental Capacity Act is the best way of judging capacity in this case. And we want to and this bill goes along with it. So I ask the noble Lord to think again. There have been amendments to Disapply three two and three three of the Mental Capacity Act for this purpose, and we have heard very good proposals of alternative.
And surely something can be worked out.
14:47
Baroness Cass (Crossbench)
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Baroness Cass (Crossbench)
I just want to make two very >> I just want to make two very brief points. Firstly, I would like brief points. Firstly, I would like to support my noble friend Viscount Colville point about the Colville point about the particularly 115G being clear about whether this is or isn't a medical treatment, because if it is a medical treatment, it does drive physicians to continuously ask people whether they would wish to receive assisted dying. And the issue is not just in Canada.
A very close friend of mine recently died in the Netherlands, and she was so persistently asked if she wanted to consider euthanasia and his euthanasia in the Netherlands. She chose to die in a Jewish hospice because that was the one place where they would not persistently ask her that question, because they don't carry out euthanasia in that particular hospice. The other point I would like to make broadly about amendment 115, which I do strongly support. We have frequently had Chris Whitty opinion quoted on the utility of the Mental 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, and 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 a 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, and having very little familiarity with that, he said, well, my Lord, according to my wife.
And the defence counsel jumped up and said, he can't say that, my Lord, it's hearsay. So my point is that if you ask me who I was going to trust on the issue of capacity, an epidemiologist or my mobile friend here who has practised all her life in psychiatry, the choice for me is very clear.
**** Possible New Speaker ****
To move my amendment. One one of three, which concerns a matter that had not been a matter that had not been previously raised in the context of mental capacity, or my amendment, I suspect, would have been grouped suspect, would have been grouped earlier, which is codes of practice. To explain it, I've asked any noble Lord interested to turn to the bill Lord interested to turn to the bill where they will find under section 39 two what the bill 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 one, as the Secretary of State
A very close friend of mine recently died in the Netherlands, and she was so persistently asked if she wanted to consider euthanasia and his euthanasia in the Netherlands. She chose to die in a Jewish hospice because that was the one place where they would not persistently ask her that question, because they don't carry out euthanasia in that particular hospice. The other point I would like to make broadly about amendment 115, which I do strongly support. We have frequently had Chris Whitty opinion quoted on the utility of the Mental 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, and 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 a 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, and having very little familiarity with that, he said, well, my Lord, according to my wife.
And the defence counsel jumped up and said, he can't say that, my Lord, it's hearsay. So my point is that if you ask me who I was going to trust on the issue of capacity, an epidemiologist or my mobile friend here who has practised all her life in psychiatry, the choice for me is very clear.
**** Possible New Speaker ****
To move my amendment. One one of three, which concerns a matter that had not been a matter that had not been previously raised in the context of mental capacity, or my amendment, I suspect, would have been grouped suspect, would have been grouped earlier, which is codes of practice. To explain it, I've asked any noble Lord interested to turn to the bill Lord interested to turn to the bill where they will find under section 39 two what the bill 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 one, as the Secretary of State
14:50
Lord Goodman of Wycombe (Conservative)
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Lord Goodman of Wycombe (Conservative)
considers appropriate. So it's a very broad provision concerning any code of practice that might arise code of practice that might arise as a consequence of the Bill. Now, the Delegated Powers Committee on the Delegated Powers Committee on which I sit was very critical of this provision and said the this provision and said the following. It may be that clause 39 two is intended to be a sweep up power, in case the subject matter power, in case the subject matter covered by the duty in clause 39 one is 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 two is removed from the bill.
Now, my amendment doesn't go quite so far as the committee report suggested, but it does say that any code of practice issued in 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. So what, I would ask the sponsor of the Bill to do in responding to this amendment is be as helpful to the Committee as he indicated he would be when he gave evidence to it in all matters except to prove substances to which we will return in due course.
I see he's nodding and I look forward to his response in due course.
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 two is removed from the bill.
Now, my amendment doesn't go quite so far as the committee report suggested, but it does say that any code of practice issued in 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. So what, I would ask the sponsor of the Bill to do in responding to this amendment is be as helpful to the Committee as he indicated he would be when he gave evidence to it in all matters except to prove substances to which we will return in due course.
I see he's nodding and I look forward to his response in due course.
14:52
Lord Deben (Conservative)
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Lord Deben (Conservative)
I'm hoping that I was going to help the noble Lord, and I'm sure he'll be pleased with that. Help. The the point that I wanted to draw together here is that what has been together here is that what has been discussed has been some very fundamental issues of interest to the people who are going to have to carry this bill through. And therefore, I do want to recommend to the noble Lord three very simple things. First of all, the sooner that we can know what his own amendments are going to be, the very much better it will be, because perhaps some of us could help.
Certainly not me, but some of the experts could help in making sure that they are adequate. The second thing is that I would like to support Lady Butler-sloss in her. Also her demand that we should in fact know as much as possible in advance. But the particular gravamen of what I wanted to say is this 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.
But when you talk to people who have some real understanding about the bill, the issues which concern them most are those things where they feel that there is not adequate clarity, particularly for those who are medics, those who are going to be involved. And it does seem to me that this debate has been different, if I may say so to my noble friend, has been different from previous debates in this area, because what it has concentrated on is the lack of clarity about what we really mean by competence, and has made the distinction between the competence that is satisfactory to make important decisions, but immediate ones which can be reversed, and the amount of competence that is necessary to make fundamental decisions where you do have to have a longer term ability.
And it just seems to me that it would be very advantageous to the noble Lords whole cause if he can take this very seriously indeed, because if he can find a proper answer to it which satisfies the very sensible things that have been said, I think it will go very much further. And this is rather delicately sentence which I hope you will not take amiss, to repair some of the impression, which is that every amendment is shoved off.
These are not ones, if I may say so, to treat in anything else but the very greatest of care, my Lord, I rise to speak to amendment 581. Let me read this to your Lordship. In
Certainly not me, but some of the experts could help in making sure that they are adequate. The second thing is that I would like to support Lady Butler-sloss in her. Also her demand that we should in fact know as much as possible in advance. But the particular gravamen of what I wanted to say is this 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.
But when you talk to people who have some real understanding about the bill, the issues which concern them most are those things where they feel that there is not adequate clarity, particularly for those who are medics, those who are going to be involved. And it does seem to me that this debate has been different, if I may say so to my noble friend, has been different from previous debates in this area, because what it has concentrated on is the lack of clarity about what we really mean by competence, and has made the distinction between the competence that is satisfactory to make important decisions, but immediate ones which can be reversed, and the amount of competence that is necessary to make fundamental decisions where you do have to have a longer term ability.
And it just seems to me that it would be very advantageous to the noble Lords whole cause if he can take this very seriously indeed, because if he can find a proper answer to it which satisfies the very sensible things that have been said, I think it will go very much further. And this is rather delicately sentence which I hope you will not take amiss, to repair some of the impression, which is that every amendment is shoved off.
These are not ones, if I may say so, to treat in anything else but the very greatest of care, my Lord, I rise to speak to amendment 581. Let me read this to your Lordship. In
14:54
Lord Sandhurst (Conservative)
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Lord Sandhurst (Conservative)
the event that the assisting prevent professional has doubts as to the person's capacity for the to the person's capacity for the purposes of subsection five A, the assisting professional a must take assisting professional a must take steps to assess the person's capacity, including if they are not capacity, including if they are not a person meeting the requirements under section 12 six B seeking the under section 12 six B seeking the advice of such a person, and may not proceed further until, with the benefit of such advice is received under paragraph A, they've 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 might use neutral terms, is about to be provided with the substance with which life will be ended. It's the very end of the process and the assisting professional is there. And what it requires or would require is that if they have doubts as to that individual's capacity, they must seek advice from someone who is in fact a practising registered psychiatrist. What could be objectionable about that, and why is it not necessary if the assisting professional has doubts? And should it not be mandatory? Because, as we've heard, we know as a fact that people's capacity can fluctuate if they have certain conditions, then I see the noble Lord nod when I said that.
And this is the situation when the actual final decision whether or not to end life is being made, when it is absolutely critical that the assisting professional has confidence based on proper knowledge, that the applicant has the necessary capacity. My Lord, this amendment, together with a fair number of other amendments I have put forward, is one which was put to me by clad, the Complex Life and Decisions group at King's College London.
We've heard them mentioned previously by other speakers today on other occasions, but I think it's necessary because I shall refer to them again, that I actually explain who they are and what they do. This is a group which has substantial expertise in a range of relevant disciplines. This group is concerned that any bill such as this one is drafted in the best way to ensure that it operates in practice without avoidable dangers. And because this is the first of their suggested amendments, which I come to, I propose to say a little bit more about them.
They comprise psychiatrists, psychologists, lawyers, social scientists. They are serious academics. They come at this without side. They are simply really anxious that those who are involved at the sharp end actually have the best framework in which to operate. Their chair is Professor Bobby Duffy, professor of public policy and director of the Policy Institute. Other members are Professor Gareth Owen, professor of psychological medicine, ethics and law, and an honorary consultant psychiatrist at the prestigious South Maudsley Hospital.
Alexandra Pollett, who is the Director of research, who specialises in mental health policy and public health. Professor Ruck-keene, an honorary King's Counsel who is based in the Institute of Psychiatry, Psychology and Neuroscience at the Dickson School of Law and is also a Wellcome Research Fellow researching mental capacity law, mental health law and disability law. Professor Katherine Sleeman, who is the Lang Galazka Che Chair in Palliative Care based at the Cicely Saunders Institute at KCL. They have a Director of engagement, Suzanne Hall, and a NIH doctoral fellow, doctor Liam Gibb.
So they are a range of absolutely top class professionals who know about the detail of this. 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, so to speak, registered as being serious ones. They are not from people who are saying don't have such a bill at all. They're saying, and this is really important, if we are going to embark on this course.
Of helping people to die with medical, I call I'm not going to use pejorative terms, but we'll call it medical assistance. Then it must be done properly. And it's very important that capacity is properly assessed. And we've heard about the difficulties with the Mental Capacity Act. We have to know that someone really does retain the information throughout, or if they haven't retained it, that it's explained to them. And we have to ensure that this whole point of capacity is seriously addressed.
And I suggest to this House that and I'm not casting doubts on the seriousness of those who put these proposals forward or the proponents of the bill. But I am suggesting that the issue of capacity and we've heard from the noble Lady Baroness Butler-Sloss, who's looked at this from the operation of the courts and from distinguished psychiatrists and other practitioners, that there is a real issue here, that the Mental Capacity Act is not the right act for this.
It may be one. We all know what it means and how it works in all the lawyers do, but something has got to be done on that issue. It was not designed for this. It presumes capacity and explicitly safeguards or allows unwise decisions. You can make an unwise decision when you have capacity. I probably make them every day. I hope people wouldn't die at my capacity. So these amendments are designed to fix a real hole in this legislation, and to give working capacity and working capacity definition, I needn't say very much more.
I've explained the clad, and what I would say then is a right through this process up until the very last moment, when the substance is being issued and is about to be administered. Those concerned, the doctor, the assisting professional, must be properly informed and satisfied on a proper and fundamental basis. That, the person put it simply, knows what they are doing and has the capacity to make that judgement.
This is aimed at the very moment when the applicant might use neutral terms, is about to be provided with the substance with which life will be ended. It's the very end of the process and the assisting professional is there. And what it requires or would require is that if they have doubts as to that individual's capacity, they must seek advice from someone who is in fact a practising registered psychiatrist. What could be objectionable about that, and why is it not necessary if the assisting professional has doubts? And should it not be mandatory? Because, as we've heard, we know as a fact that people's capacity can fluctuate if they have certain conditions, then I see the noble Lord nod when I said that.
And this is the situation when the actual final decision whether or not to end life is being made, when it is absolutely critical that the assisting professional has confidence based on proper knowledge, that the applicant has the necessary capacity. My Lord, this amendment, together with a fair number of other amendments I have put forward, is one which was put to me by clad, the Complex Life and Decisions group at King's College London.
We've heard them mentioned previously by other speakers today on other occasions, but I think it's necessary because I shall refer to them again, that I actually explain who they are and what they do. This is a group which has substantial expertise in a range of relevant disciplines. This group is concerned that any bill such as this one is drafted in the best way to ensure that it operates in practice without avoidable dangers. And because this is the first of their suggested amendments, which I come to, I propose to say a little bit more about them.
They comprise psychiatrists, psychologists, lawyers, social scientists. They are serious academics. They come at this without side. They are simply really anxious that those who are involved at the sharp end actually have the best framework in which to operate. Their chair is Professor Bobby Duffy, professor of public policy and director of the Policy Institute. Other members are Professor Gareth Owen, professor of psychological medicine, ethics and law, and an honorary consultant psychiatrist at the prestigious South Maudsley Hospital.
Alexandra Pollett, who is the Director of research, who specialises in mental health policy and public health. Professor Ruck-keene, an honorary King's Counsel who is based in the Institute of Psychiatry, Psychology and Neuroscience at the Dickson School of Law and is also a Wellcome Research Fellow researching mental capacity law, mental health law and disability law. Professor Katherine Sleeman, who is the Lang Galazka Che Chair in Palliative Care based at the Cicely Saunders Institute at KCL. They have a Director of engagement, Suzanne Hall, and a NIH doctoral fellow, doctor Liam Gibb.
So they are a range of absolutely top class professionals who know about the detail of this. 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, so to speak, registered as being serious ones. They are not from people who are saying don't have such a bill at all. They're saying, and this is really important, if we are going to embark on this course.
Of helping people to die with medical, I call I'm not going to use pejorative terms, but we'll call it medical assistance. Then it must be done properly. And it's very important that capacity is properly assessed. And we've heard about the difficulties with the Mental Capacity Act. We have to know that someone really does retain the information throughout, or if they haven't retained it, that it's explained to them. And we have to ensure that this whole point of capacity is seriously addressed.
And I suggest to this House that and I'm not casting doubts on the seriousness of those who put these proposals forward or the proponents of the bill. But I am suggesting that the issue of capacity and we've heard from the noble Lady Baroness Butler-Sloss, who's looked at this from the operation of the courts and from distinguished psychiatrists and other practitioners, that there is a real issue here, that the Mental Capacity Act is not the right act for this.
It may be one. We all know what it means and how it works in all the lawyers do, but something has got to be done on that issue. It was not designed for this. It presumes capacity and explicitly safeguards or allows unwise decisions. You can make an unwise decision when you have capacity. I probably make them every day. I hope people wouldn't die at my capacity. So these amendments are designed to fix a real hole in this legislation, and to give working capacity and working capacity definition, I needn't say very much more.
I've explained the clad, and what I would say then is a right through this process up until the very last moment, when the substance is being issued and is about to be administered. Those concerned, the doctor, the assisting professional, must be properly informed and satisfied on a proper and fundamental basis. That, the person put it simply, knows what they are doing and has the capacity to make that judgement.
15:02
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
My Lords, I rise to speak to amendment 119. In my name and that amendment 119. In my name and that of my noble friend Baroness Hollins. This seeks to insert a new clause This seeks to insert a new clause to provide a mental capacity assessment for people with learning difficulties, and also have a difficulties, and also have a clearer view of who would be able to carry out that assessment. My Lords, I read this last week in the chamber, and the noble and learned Lord said he would respond when we got to clause 22.
So I assume as we're discussing clause 22 parts in this group of amendments, he may reply to me. Also, I wrote to the noble Lord, Lord this week with a number of concerns. One of them was the advocate, and I understand that many in your chamber. I'm not going to read the letter out now because it raises a few different issues. But many noble Lords won't have seen that letter. So I will publish my letter to the noble and learned Lord.
Some of the issues that I'm concerned about in this clause is around how important advocates are, and the safeguarding that they can provide. Now, in Another place, Daniel Francis MP tried to ensure that advocates were there as part of the decision, but that was voted down in the Commons as an amendment. And what we have now is something which I believe is somewhat weaker because now an advocate only has to be there if instructed. It doesn't make it compulsory, it's optional.
And this seems to be a particular paradox, because somebody might not actually understand what they're turning down. And I'm 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 to only be given to those who are deemed a benefit to society. Now, disabled people were not included in that, and I wonder whether it was because nice didn't expect the response around disability to be terribly positive.
The equality impact assessment for this bill, table 27, seems to suggest that if people with learning disabilities access assisted suicide, then there could be a saving to the NHS of £2,323 for every person with a learning disability who accesses it. And I'd like the noble and Lord to confirm whether he reads that table in the same way that I do, because giving doctors the ability and the option to raise this with patients presents a serious risk of medical coercion.
Negative judgements 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 resuscitations that were put on disabled people during the pandemic without their permission or knowledge, and written evidence submitted by the all party group on Down's Syndrome in evidence for this bill, said the most doctors do not receive adequate training in learning disabilities and down syndrome, and could misjudge capacity due to biases or lack of experience, and it could lead to undue exclusion and unjustified inclusion in discussions.
And we know prenatal screening for Down's syndrome and the pressure to terminate that comes after any diagnosis demonstrates the pervasive societal attitude that undervalues the lives of disabled people. Studies from 2025 show that people learning disabilities generally exhibit high level of satisfaction with their lives, but that doesn't sit with the perception of non-disabled people of those lives. And I spoke recently to a nurse who works with people with learning disabilities, and they told me about the highly suggestible nature. And actually, that's why you have to put a lot of trust in those who work with people in disabilities.
The example I was given was just over what somebody has for an evening meal, and they gave him the case of an individual who always repeats the last thing that they're told. So 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'll pick it because they are so suggestible. And this, my Lords, really leads me to we have a failure to understand the reality of lives of people with learning disabilities.
PubMed published an article in 2025 that looked at the Netherlands and after reviewing 39 cases of those who had access to assisted suicide service because of intellectual disabilities or autism spectrum disorders, in 24 cases, the disability was the main factor or major contributing factor in the decision to ask for and grant the service, and in 21% of cases, the only causes of suffering described were factors directly associated with intellectual disability or autism. I'm sure many of us have been contacted by many people who are really worried about the impact that this could have on their families, and I'm afraid, my Lord, from my experience of working with people with learning disabilities, not to the extent of my noble friend Baroness Hollins, but I'm also very concerned as well.
Professor Irene Tuffrey wine, a specialist in palliative care and the impact of it on people with learning disabilities. She specifically looked at studies in the Netherlands, but then looking at what was happening in the UK so that in the UK, people with severe learning disabilities would not meet the criteria. But there's a real danger of those with mild disability and the risk they face in UK. There's nothing in the proposed legislation to prevent the doctor raising the question and how it's offered.
People with learning disabilities have internalised the message that they're not as important as others, and are likely to hear the raising of the question, a suggestion that this might be the right thing to do. It becomes normalised and it becomes when and not if and if someone living together with others who have similar issues have it offered and accept 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 are concerned that suggestion of assisted dying to a person might be construed by them as the right course. And this, my Lords, would fit under undue influence. And then, of course, there's the issue of medical arrogance. Some doctors do think they know best and could easily talk a person with a learning disability into doing what they wanted.
I accept many doctors want to get it right. They're well-meaning, but they can be wrong. They do choose what they tell someone, and it's always difficult to convey bad news about a condition, and then the capacity to assess that is really, really important. Autism and learning disability is very common and poses a significant risk at risk to the population. The elderly also suggestible and might be similarly disadvantaged. But my Lords, I'm going to leave the last words in my contribution this afternoon to Tommy Jessop.
Tommy, be well known to many of us as visited Parliament many times. Tommy has Down's syndrome, and what he said was we need rules to keep us safe. But that has not happened. Our lives are worth living. Please protect us. We are not collateral damage, my Lords. It's now an opportunity for noble and learned Lord to actually say that learning people with learning disabilities are not collateral damage.
So I assume as we're discussing clause 22 parts in this group of amendments, he may reply to me. Also, I wrote to the noble Lord, Lord this week with a number of concerns. One of them was the advocate, and I understand that many in your chamber. I'm not going to read the letter out now because it raises a few different issues. But many noble Lords won't have seen that letter. So I will publish my letter to the noble and learned Lord.
Some of the issues that I'm concerned about in this clause is around how important advocates are, and the safeguarding that they can provide. Now, in Another place, Daniel Francis MP tried to ensure that advocates were there as part of the decision, but that was voted down in the Commons as an amendment. And what we have now is something which I believe is somewhat weaker because now an advocate only has to be there if instructed. It doesn't make it compulsory, it's optional.
And this seems to be a particular paradox, because somebody might not actually understand what they're turning down. And I'm 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 to only be given to those who are deemed a benefit to society. Now, disabled people were not included in that, and I wonder whether it was because nice didn't expect the response around disability to be terribly positive.
The equality impact assessment for this bill, table 27, seems to suggest that if people with learning disabilities access assisted suicide, then there could be a saving to the NHS of £2,323 for every person with a learning disability who accesses it. And I'd like the noble and Lord to confirm whether he reads that table in the same way that I do, because giving doctors the ability and the option to raise this with patients presents a serious risk of medical coercion.
Negative judgements 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 resuscitations that were put on disabled people during the pandemic without their permission or knowledge, and written evidence submitted by the all party group on Down's Syndrome in evidence for this bill, said the most doctors do not receive adequate training in learning disabilities and down syndrome, and could misjudge capacity due to biases or lack of experience, and it could lead to undue exclusion and unjustified inclusion in discussions.
And we know prenatal screening for Down's syndrome and the pressure to terminate that comes after any diagnosis demonstrates the pervasive societal attitude that undervalues the lives of disabled people. Studies from 2025 show that people learning disabilities generally exhibit high level of satisfaction with their lives, but that doesn't sit with the perception of non-disabled people of those lives. And I spoke recently to a nurse who works with people with learning disabilities, and they told me about the highly suggestible nature. And actually, that's why you have to put a lot of trust in those who work with people in disabilities.
The example I was given was just over what somebody has for an evening meal, and they gave him the case of an individual who always repeats the last thing that they're told. So 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'll pick it because they are so suggestible. And this, my Lords, really leads me to we have a failure to understand the reality of lives of people with learning disabilities.
PubMed published an article in 2025 that looked at the Netherlands and after reviewing 39 cases of those who had access to assisted suicide service because of intellectual disabilities or autism spectrum disorders, in 24 cases, the disability was the main factor or major contributing factor in the decision to ask for and grant the service, and in 21% of cases, the only causes of suffering described were factors directly associated with intellectual disability or autism. I'm sure many of us have been contacted by many people who are really worried about the impact that this could have on their families, and I'm afraid, my Lord, from my experience of working with people with learning disabilities, not to the extent of my noble friend Baroness Hollins, but I'm also very concerned as well.
Professor Irene Tuffrey wine, a specialist in palliative care and the impact of it on people with learning disabilities. She specifically looked at studies in the Netherlands, but then looking at what was happening in the UK so that in the UK, people with severe learning disabilities would not meet the criteria. But there's a real danger of those with mild disability and the risk they face in UK. There's nothing in the proposed legislation to prevent the doctor raising the question and how it's offered.
People with learning disabilities have internalised the message that they're not as important as others, and are likely to hear the raising of the question, a suggestion that this might be the right thing to do. It becomes normalised and it becomes when and not if and if someone living together with others who have similar issues have it offered and accept 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 are concerned that suggestion of assisted dying to a person might be construed by them as the right course. And this, my Lords, would fit under undue influence. And then, of course, there's the issue of medical arrogance. Some doctors do think they know best and could easily talk a person with a learning disability into doing what they wanted.
I accept many doctors want to get it right. They're well-meaning, but they can be wrong. They do choose what they tell someone, and it's always difficult to convey bad news about a condition, and then the capacity to assess that is really, really important. Autism and learning disability is very common and poses a significant risk at risk to the population. The elderly also suggestible and might be similarly disadvantaged. But my Lords, I'm going to leave the last words in my contribution this afternoon to Tommy Jessop.
Tommy, be well known to many of us as visited Parliament many times. Tommy has Down's syndrome, and what he said was we need rules to keep us safe. But that has not happened. Our lives are worth living. Please protect us. We are not collateral damage, my Lords. It's now an opportunity for noble and learned Lord to actually say that learning people with learning disabilities are not collateral damage.
15:10
Lord Markham (Conservative)
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Lord Markham (Conservative)
If if I may hopefully also like >> If if I may hopefully also like my noble friend, in the spirit of helpfulness, I think what we've seen here is, is a thoughtful seen here is, is a thoughtful debate. And I think what we all want here is obviously the best decision making framework for these decisions. And I'm definitely not going to pretend that I have personal expertise in terms of what is the best decision making framework. But what I would say in terms of some of the earlier comments is, of course, is that not only is Professor Chris Whitty, Chief Medical Officer and, you know, my while he might not be an expert in the psychiatry field, of course he does get to draw on the expertise of the many, many experts in that field as well.
And in fact, there are a number of psychiatrists who wrote in as part of this process to to MPs and Lords saying that they felt that the Mental Capacity Act was actually a good, tried and tested framework to be used on on this basis, and that there are certain dangers if you try and introduce as yet a new unknown framework and the possibility of confusing situations, you know, you can have two patients, one with do not resuscitate, another with maybe motor neurone disease, and a question about whether they switch off the ventilator or not, or a third one who was being assessed under assisted dying.
And you've got, you know, quite similar circumstances there. And the question about if you were to have two different frameworks of, of assessing them, then then you've got the ability for quite a lot of confusion as to which is the best way to do that. So, so I say this in, in order to make sure that we're, you know, looking at all the pros and cons, as I say, personally, I'm not going to pretend at all to be an expert on this. But what what I would say is that the Mental Capacity Act has been tried and tested for a number of years, and there are a number of expert psychiatrists who do think it is absolutely the right framework to do this.
I apologise.
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I just wonder whether the noble Lord, in reading the Mental Capacity Act and reading amendment Capacity Act and reading amendment 115, has recognised that the wording in 115 is deliberately taken from the Mental Capacity Act taken from the Mental Capacity Act in order to not provide confusion and to not create the difficult and to not create the difficult situation that he's alluding to. That could have happened if
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somebody was trying to construct an assessment framework at the blue. I mean, clearly where that
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I mean, clearly where that clarity can exist, then clearly, clearly, that's got to be the right thing. But, you know, my my understanding and again, I'm understanding and again, I'm talking to a lot of amendments have been made in all of this. There's a lot of the amendments are seeking lot of the amendments are seeking to replace Mental Capacity Act with a new decision making process, which inevitably is not tried and which inevitably is not tried and tested, and so could be confusing.
With that, I will reiterate again,
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not being an expert in this, but I think. I'm grateful to hear from my
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I'm grateful to hear from my noble friend further evidence concerning Professor Sir Chris Whitty that he's drawn on expertise Whitty that he's drawn on expertise from other specialities in addition to epidemiology. So I wonder if he could perhaps contact him them and could perhaps contact him them and ask who he drew on before he gave his evidence in the other place his evidence in the other place because 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.
And in addition he mentions individual psychiatrists. But is he not also concerned that the Royal College one can often find individuals who say their views? But should we not give greater weight to the fact the Royal College have been worried about
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this since actually Second Reading in the other place? So so the so there are a number
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So so the so there are a number of psychiatrists. Absolutely. Overview. They do want a new framework. Again, I know and they wrote there are a large number of them who wrote to MPs who said that the Mental Capacity Act was totally the Mental Capacity Act was totally relevant in all of this, or I'm not saying I personally know what's best, I'm just trying to provide balance to it, because a number of balance to it, because a number of noble Lords have got up and said we should be introducing new framework, and I think there's some serious arguments, including that of the Chief Medical Officer, of why that shouldn't be the case.
I can't speak to the evidence he's taken, but what I do know of working very closely with Professor Chris Whitty is he's very evidence based as a person, and I would be very, very confident that he's taken a lot of expert advice on this.
And in fact, there are a number of psychiatrists who wrote in as part of this process to to MPs and Lords saying that they felt that the Mental Capacity Act was actually a good, tried and tested framework to be used on on this basis, and that there are certain dangers if you try and introduce as yet a new unknown framework and the possibility of confusing situations, you know, you can have two patients, one with do not resuscitate, another with maybe motor neurone disease, and a question about whether they switch off the ventilator or not, or a third one who was being assessed under assisted dying.
And you've got, you know, quite similar circumstances there. And the question about if you were to have two different frameworks of, of assessing them, then then you've got the ability for quite a lot of confusion as to which is the best way to do that. So, so I say this in, in order to make sure that we're, you know, looking at all the pros and cons, as I say, personally, I'm not going to pretend at all to be an expert on this. But what what I would say is that the Mental Capacity Act has been tried and tested for a number of years, and there are a number of expert psychiatrists who do think it is absolutely the right framework to do this.
I apologise.
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I just wonder whether the noble Lord, in reading the Mental Capacity Act and reading amendment Capacity Act and reading amendment 115, has recognised that the wording in 115 is deliberately taken from the Mental Capacity Act taken from the Mental Capacity Act in order to not provide confusion and to not create the difficult and to not create the difficult situation that he's alluding to. That could have happened if
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somebody was trying to construct an assessment framework at the blue. I mean, clearly where that
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I mean, clearly where that clarity can exist, then clearly, clearly, that's got to be the right thing. But, you know, my my understanding and again, I'm understanding and again, I'm talking to a lot of amendments have been made in all of this. There's a lot of the amendments are seeking lot of the amendments are seeking to replace Mental Capacity Act with a new decision making process, which inevitably is not tried and which inevitably is not tried and tested, and so could be confusing.
With that, I will reiterate again,
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not being an expert in this, but I think. I'm grateful to hear from my
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I'm grateful to hear from my noble friend further evidence concerning Professor Sir Chris Whitty that he's drawn on expertise Whitty that he's drawn on expertise from other specialities in addition to epidemiology. So I wonder if he could perhaps contact him them and could perhaps contact him them and ask who he drew on before he gave his evidence in the other place his evidence in the other place because 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.
And in addition he mentions individual psychiatrists. But is he not also concerned that the Royal College one can often find individuals who say their views? But should we not give greater weight to the fact the Royal College have been worried about
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this since actually Second Reading in the other place? So so the so there are a number
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So so the so there are a number of psychiatrists. Absolutely. Overview. They do want a new framework. Again, I know and they wrote there are a large number of them who wrote to MPs who said that the Mental Capacity Act was totally the Mental Capacity Act was totally relevant in all of this, or I'm not saying I personally know what's best, I'm just trying to provide balance to it, because a number of balance to it, because a number of noble Lords have got up and said we should be introducing new framework, and I think there's some serious arguments, including that of the Chief Medical Officer, of why that shouldn't be the case.
I can't speak to the evidence he's taken, but what I do know of working very closely with Professor Chris Whitty is he's very evidence based as a person, and I would be very, very confident that he's taken a lot of expert advice on this.
15:15
Lord Moylan (Conservative)
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Lord Moylan (Conservative)
My Lords, I have amendment two, >> My Lords, I have amendment two, three, five in this group and I rise to speak to it briefly. I shall probably be mocked for naivety, really. We've had. So how naivety, really. We've had. So how long is it now? 30 years of the Mental Capacity Act. And the concept of capacity has been developed in great detail in a very specialist way. My noble friend Lord Sandhurst said. The lawyers understand it. Perhaps others don't.
Of course. I'm sure he meant to say the psychiatrists understand it too, because they have to work with it regularly. But he's right that ordinary people don't actually have to engage very much with the Mental Capacity Act, and I'm one of those ordinary people. I bring no expertise, either as a lawyer or as a psychiatrist in relation to the Mental Capacity Act. I'm simply thinking in this amendment how it is ordinary people would regard it if they saw people who were suffering with learning disabilities or autism or mental disorders being led into assisted dying and opting for assisted dying and having that facilitated.
Now, I've no doubt there's some dignity in dying commissioned poll which says that they would widely applaud it and it would be a very popular thing. But I don't actually believe that's true. When actual cases are presented to people and they see them happening, I think they would say it is simply wrong. It is wrong that people who have these conditions should be able to access assisted dying. And so my amendment two, three, five takes the conditions that are specified in clause 22.
In clause 22, these conditions, which are learning disability, mental disorder, autism, or experience experiencing substantial difficulty in understanding the processes or information that is relevant. In clause 22, we say to these people, we are going to help you with an independent advocate. What my clause two three what my amendment 235 does is simply say those people will not be admissible to the process. I do it by saying that any preliminary declaration they make will be void. That means that under the terms of the bill, they won't be able to proceed further.
I think that's what a large number of people in the a large number of ordinary people would expect. They would want us to be protecting them. And I think the best way of protecting them is to say no. I know that offends the noble and learned Lord. Lord Falconer's notion of autonomy, which he's trying to adjust for these people. I know it might strike those who are, who have spent, who spend their lives working with the concept of capacity as being rather naive and and backward of me.
But I think it's what most people want. I think it's the safest course. If the bill is to go into implementation, it can be amended in the future if people want. But at this stage I think it is by far the safest course. So I would recommend amendment 235, which would terminate this debate by simply making it impossible for people with those conditions to proceed. And as a consequence of that, simply as a consequence of that clause 22 becomes unnecessary, which is why I have I have I have the clause stand part 22 in this not because I have an objection to clause 22 in in some complex way, it's simply that it becomes unnecessary in the bill.
It's otiose.
Of course. I'm sure he meant to say the psychiatrists understand it too, because they have to work with it regularly. But he's right that ordinary people don't actually have to engage very much with the Mental Capacity Act, and I'm one of those ordinary people. I bring no expertise, either as a lawyer or as a psychiatrist in relation to the Mental Capacity Act. I'm simply thinking in this amendment how it is ordinary people would regard it if they saw people who were suffering with learning disabilities or autism or mental disorders being led into assisted dying and opting for assisted dying and having that facilitated.
Now, I've no doubt there's some dignity in dying commissioned poll which says that they would widely applaud it and it would be a very popular thing. But I don't actually believe that's true. When actual cases are presented to people and they see them happening, I think they would say it is simply wrong. It is wrong that people who have these conditions should be able to access assisted dying. And so my amendment two, three, five takes the conditions that are specified in clause 22.
In clause 22, these conditions, which are learning disability, mental disorder, autism, or experience experiencing substantial difficulty in understanding the processes or information that is relevant. In clause 22, we say to these people, we are going to help you with an independent advocate. What my clause two three what my amendment 235 does is simply say those people will not be admissible to the process. I do it by saying that any preliminary declaration they make will be void. That means that under the terms of the bill, they won't be able to proceed further.
I think that's what a large number of people in the a large number of ordinary people would expect. They would want us to be protecting them. And I think the best way of protecting them is to say no. I know that offends the noble and learned Lord. Lord Falconer's notion of autonomy, which he's trying to adjust for these people. I know it might strike those who are, who have spent, who spend their lives working with the concept of capacity as being rather naive and and backward of me.
But I think it's what most people want. I think it's the safest course. If the bill is to go into implementation, it can be amended in the future if people want. But at this stage I think it is by far the safest course. So I would recommend amendment 235, which would terminate this debate by simply making it impossible for people with those conditions to proceed. And as a consequence of that, simply as a consequence of that clause 22 becomes unnecessary, which is why I have I have I have the clause stand part 22 in this not because I have an objection to clause 22 in in some complex way, it's simply that it becomes unnecessary in the bill.
It's otiose.
15:19
Lord Harper (Conservative)
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Lord Harper (Conservative)
My Lords, I just wanted to rise >> My Lords, I just wanted to rise to make a few points. Firstly, in response to Lord Markham's perfectly fair point at the perfectly fair point at the beginning about the difference between this debate and the earlier debate we had, I think it was a very clear distinction. The earlier debate we had was very wide ranging debate about capacity. And I think because of that debate, what's happened here is we've got some very specific amendments to look at, which are to tackle some of the issues that were thrown up in that debate.
And I think the reason why this is important was, I think, set out by Lord Deben, which is that the practitioners in this area, the professionals of various types that will be involved in implementing this regime if this bill becomes law, are have been saying publicly and to us specifically that they want that clarity about decision making so that they're clear about the legal framework that applies to them and the and the decision making regime. And I think that's very important.
I do not want to speak to all of the amendments in the group. I want to focus on, on a couple of points. So specifically, we've already talked about the capacity issues around people with deprivation of liberty orders and the noble and learned Lord Doyle Falconer spoke earlier on about that debate and the fact that he has rightly written to noble Lords to set out his intention to to bring forward those amendments at report. We haven't yet seen the detail of those, so I've just got a couple of questions if he's able to furnish us with that.
I know he said he was in the process of talking to to officials and lawyers about that. If he could give us an indication about whether the protections he's looking at are going to be something like a yellow flag or a red flag, in other words, a prohibition on someone who's been recently under a deprivation of liberty order that they wouldn't be able to qualify under this bill, but also confirmation that we would actually have the protections on the face of the bill, or whether they would all be left to codes of practice or guidance, and without having done the detailed drafting, if he could give us an indication of his direction of travel, I think that would be very helpful.
A number of noble Lords have pointed out that there is some confusion, including, I think, 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 about the and you have you have to have a higher level of decision making capacity for more important decisions. And I think Lord Whitty had to row back from Chris Whitty, had to row back from that in a letter that he sent as my noble friend Lady Berridge said.
So what I want to ask the noble and learned Lord is can he just set out his understanding of the position under the MCA for these sorts of decisions? Because legal experts have asserted that it's factually incorrect in relation to the mental capacity? Alex Ruck-keene KC, who my noble friend Lord Sandhurst mentioned as part of the Clad group, has confirmed that while common law may once have suggested a sliding scale, the MCA itself contains no such requirement. And indeed, that's one of the things that the amendment that they have drafted that's been put forward deals with.
And even if there is some case law on some MCA decisions, that indicates a sliding scale, of course, there can't be any case law that's relevant to these decisions, because of course, it hasn't previously been possible for decisions about assisted suicide to have been lawfully taken. So there isn't any case law that specifically pertains to this gravity of decision. But it would be helpful to understand what the noble and learned Lord thinks is the position. And then I think this is a question, actually, which the Minister is capable of answering or able to answer without straying into making a policy decision.
So I, I wasn't I changed my word. I wasn't trying to imply her competence at making the, the thing it was more about whether she should or shouldn't is that is what is the government's understanding of the the MCA. Given that the Chief Medical Officer sets out one thing in oral evidence and then corrected it, be helpful just to have what the government's definitive view is about this issue, about whether there is or isn't a sliding scale, because that's a factual question that doesn't go to an opinion about this legislation.
It would just be helpful for us to to know what it was. Final question in this area. And then I've got one final point is on one of one of the things that amendment 115 is also trying to to deal with is that under the Mental Capacity Act, there's a support, a support principle, which effectively becomes a duty to assist, which is that it mandates that a person is not to be treated as unable to make a decision, unless all practicable steps to help him do so have been taken without success.
Now, the danger is that the MTA was designed to help people make decisions about things like finances and care and housing, where support is plainly benevolent. Now, applying the same duty to a decision to end one's life, I think is qualitatively different. And I think it was Viscount Colville who mentioned the point about how oppressive it can be if you keep being repeatedly asked if you want something with this type of decision, and I don't think it is appropriate, therefore, and I would be interested to know whether the noble and learned Lord accepts that section one three of the MCA effectively creates a statutory, effectively a statutory duty for doctors to support patients in making this decision, and if so, whether that balance is accurate.
The final point I'd make is to talk about amendment 119 in the names of my noble friends Baroness Grey-Thompson and Baroness Hollins, to deal with the mental capacity assessments for people with learning disabilities. For a couple of reasons. And this was set out, I think, very powerfully by Baroness Hollins Baroness Grey-Thompson and also the right reverend Prelate, the Lord Bishop of Newcastle, on behalf of her colleague, the Lord Bishop of Lincoln, about their concerns about whether the MCA properly tests capacity for people with learning disabilities, making an irreversible decision of this kind.
And I think they set out the concerns very well so I won't repeat them. The only point I wanted to make was to emphasise one danger that I can see, which is the point that I think 1 or 2 of them did make, and that my noble friend Lord Shinkwin made in his earlier contribution, which is about expectations. And we do know, sadly, that many professionals involved, or a number of professionals involved in delivering healthcare have expectations about people with learning disabilities, which 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 we know from looking, for example, just picking one example of 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 that, I'm afraid I am not prepared to just leave it to medical professionals to properly safeguard 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, to recognise that they often do have capacity and they are able to make their own decisions, but they do need extra protection in order to make sure those decisions are the right ones. And I think if we don't do that knowing what we know, we will be failing them. And I think this amendment, amendment 119, is a very valuable one. And I think it commends itself to your Lordships House.
And it would do something that I've said on previous occasions. That is our job. It 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's one that we all have. And I think this amendment means that we would be fulfilling that duty in a very
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clear and powerful way. My Lords.
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My Lords. I tabled amendment 110, and this is about trying to understand which actual version of. The Mental Capacity Act are we dealing with. Capacity Act are we dealing with. The Mental Capacity Amendment Act, 2019 had a particular section in section two, which would replace section two, which would replace what was in the existing act. It hasn't yet been enacted. I don't know the reason for that. In the
And I think the reason why this is important was, I think, set out by Lord Deben, which is that the practitioners in this area, the professionals of various types that will be involved in implementing this regime if this bill becomes law, are have been saying publicly and to us specifically that they want that clarity about decision making so that they're clear about the legal framework that applies to them and the and the decision making regime. And I think that's very important.
I do not want to speak to all of the amendments in the group. I want to focus on, on a couple of points. So specifically, we've already talked about the capacity issues around people with deprivation of liberty orders and the noble and learned Lord Doyle Falconer spoke earlier on about that debate and the fact that he has rightly written to noble Lords to set out his intention to to bring forward those amendments at report. We haven't yet seen the detail of those, so I've just got a couple of questions if he's able to furnish us with that.
I know he said he was in the process of talking to to officials and lawyers about that. If he could give us an indication about whether the protections he's looking at are going to be something like a yellow flag or a red flag, in other words, a prohibition on someone who's been recently under a deprivation of liberty order that they wouldn't be able to qualify under this bill, but also confirmation that we would actually have the protections on the face of the bill, or whether they would all be left to codes of practice or guidance, and without having done the detailed drafting, if he could give us an indication of his direction of travel, I think that would be very helpful.
A number of noble Lords have pointed out that there is some confusion, including, I think, 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 about the and you have you have to have a higher level of decision making capacity for more important decisions. And I think Lord Whitty had to row back from Chris Whitty, had to row back from that in a letter that he sent as my noble friend Lady Berridge said.
So what I want to ask the noble and learned Lord is can he just set out his understanding of the position under the MCA for these sorts of decisions? Because legal experts have asserted that it's factually incorrect in relation to the mental capacity? Alex Ruck-keene KC, who my noble friend Lord Sandhurst mentioned as part of the Clad group, has confirmed that while common law may once have suggested a sliding scale, the MCA itself contains no such requirement. And indeed, that's one of the things that the amendment that they have drafted that's been put forward deals with.
And even if there is some case law on some MCA decisions, that indicates a sliding scale, of course, there can't be any case law that's relevant to these decisions, because of course, it hasn't previously been possible for decisions about assisted suicide to have been lawfully taken. So there isn't any case law that specifically pertains to this gravity of decision. But it would be helpful to understand what the noble and learned Lord thinks is the position. And then I think this is a question, actually, which the Minister is capable of answering or able to answer without straying into making a policy decision.
So I, I wasn't I changed my word. I wasn't trying to imply her competence at making the, the thing it was more about whether she should or shouldn't is that is what is the government's understanding of the the MCA. Given that the Chief Medical Officer sets out one thing in oral evidence and then corrected it, be helpful just to have what the government's definitive view is about this issue, about whether there is or isn't a sliding scale, because that's a factual question that doesn't go to an opinion about this legislation.
It would just be helpful for us to to know what it was. Final question in this area. And then I've got one final point is on one of one of the things that amendment 115 is also trying to to deal with is that under the Mental Capacity Act, there's a support, a support principle, which effectively becomes a duty to assist, which is that it mandates that a person is not to be treated as unable to make a decision, unless all practicable steps to help him do so have been taken without success.
Now, the danger is that the MTA was designed to help people make decisions about things like finances and care and housing, where support is plainly benevolent. Now, applying the same duty to a decision to end one's life, I think is qualitatively different. And I think it was Viscount Colville who mentioned the point about how oppressive it can be if you keep being repeatedly asked if you want something with this type of decision, and I don't think it is appropriate, therefore, and I would be interested to know whether the noble and learned Lord accepts that section one three of the MCA effectively creates a statutory, effectively a statutory duty for doctors to support patients in making this decision, and if so, whether that balance is accurate.
The final point I'd make is to talk about amendment 119 in the names of my noble friends Baroness Grey-Thompson and Baroness Hollins, to deal with the mental capacity assessments for people with learning disabilities. For a couple of reasons. And this was set out, I think, very powerfully by Baroness Hollins Baroness Grey-Thompson and also the right reverend Prelate, the Lord Bishop of Newcastle, on behalf of her colleague, the Lord Bishop of Lincoln, about their concerns about whether the MCA properly tests capacity for people with learning disabilities, making an irreversible decision of this kind.
And I think they set out the concerns very well so I won't repeat them. The only point I wanted to make was to emphasise one danger that I can see, which is the point that I think 1 or 2 of them did make, and that my noble friend Lord Shinkwin made in his earlier contribution, which is about expectations. And we do know, sadly, that many professionals involved, or a number of professionals involved in delivering healthcare have expectations about people with learning disabilities, which 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 we know from looking, for example, just picking one example of 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 that, I'm afraid I am not prepared to just leave it to medical professionals to properly safeguard 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, to recognise that they often do have capacity and they are able to make their own decisions, but they do need extra protection in order to make sure those decisions are the right ones. And I think if we don't do that knowing what we know, we will be failing them. And I think this amendment, amendment 119, is a very valuable one. And I think it commends itself to your Lordships House.
And it would do something that I've said on previous occasions. That is our job. It 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's one that we all have. And I think this amendment means that we would be fulfilling that duty in a very
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clear and powerful way. My Lords.
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My Lords. I tabled amendment 110, and this is about trying to understand which actual version of. The Mental Capacity Act are we dealing with. Capacity Act are we dealing with. The Mental Capacity Amendment Act, 2019 had a particular section in section two, which would replace section two, which would replace what was in the existing act. It hasn't yet been enacted. I don't know the reason for that. In the
15:29
Baroness Coffey (Conservative)
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Baroness Coffey (Conservative)
last government, I'd be useful to hear from the Minister, but also to hear from the Minister, but also to just to get an understanding, because this seems to be about how because this seems to be about how basically liberty can be removed from somebody. And I appreciate that. We've had a bit of a conversation already about conversation already about deprivation of liberty. But in order to have life sustaining treatment applied. So I guess I'm trying to understand how through this act, what would happen if the life sustaining treatment was to try and prevent an assisted suicide happening? So I'm just trying to understand what's happening with this particular part of the law, the other elements, you know, I'll just say generally, I support the proposals in amendment 115.
I think also 116, which is not in this group. It was actually proposed by the noble Lord Carlile some time ago in a in his when he was putting his judge led process in. But I actually thought that was a pretty comprehensive. But I also conscious though of 113 table by my noble friend, noble Lord, Lord, noble friend, Lord Goodman. And for me in a different way, what I think is useful about this from this amendment that he has put in place, is actually just a reminder to the committee and more broadly, that it's actually the Lord Chancellor, the Secretary of State for justice and the Ministry of Justice, who has ownership of the 2005 act.
When it comes to government and a lot of emphasis, understandably, it gets used every day in by clinicians, but not only by clinicians. And I think we shouldn't solely rely on the whether or not a doctor decides with what, as we were discussing in the previous group, what is actually a condition that applies that would be considered to be terminal illness or recoverable. So we need to just make sure we are having the lead department in charge. But I particularly wanted to explore and understand clause 22, which has been grouped in this group.
And I think the introduction of independent advocates is right. I think in I wanted to check out in subsection four, it refers to a qualifying person, but only to subsection two. I assume it's just may need a bit of drafting change. So it also applies to subsection three. But I wanted to get into understanding better for my own education, and somewhat building on what my noble friend Lord Moylan has just put forward in two, three, five. So as it stands, the section one of the Mental Health Act 1983 is actually quite a broad range of conditions apply or can be determined under that from reading other parts of that section and indeed modifications to that bill.
It could be somebody who's mentally impaired due to their alcoholism. It could be other aspects, not simply what might be considered, say, having schizophrenia or similar. What I don't think, though it applies to, is actually somebody with dementia. So I'm trying to understand what who this will work for and what will the independent advocate do. And indeed it's quite not nebulous. That's not right. It's quite high level. What is set out in clause 22. It it's simply at the beginning that the Secretary of State must, by regulations, make provision as to the appointment of persons as independent advocates.
It then goes on to say, it may be for this, it may be for that. And I just wanted to get a sense of what it is anticipated, what really the independent advocate will do. Now, last week I put forward, I think an independent advocate should be there face to face with the person they're supposed to be representing. I'm not going to go over that again, but I wanted to have what it is that we expect in more detail, candidly, than we're seeing in this bill.
There is a risk that people may start to become advocates. And I'm concerned about that. So I this is more an exploratory trying to understand what's in the mind of the sponsors of the bill when it comes to what this will happen, but also some clarity, ideally from the Minister on who they think this will cover, particularly thinking of who a qualifying person is and what they what they anticipate that role may be. And for that, while I appreciate we will come back to amendments to clause 22 later, I think it's just useful to get a certain amount of understanding about what is envisaged at this point.
But otherwise I have some sympathy with the amendment tabled by my noble friend. Lord Moylan 235.
I think also 116, which is not in this group. It was actually proposed by the noble Lord Carlile some time ago in a in his when he was putting his judge led process in. But I actually thought that was a pretty comprehensive. But I also conscious though of 113 table by my noble friend, noble Lord, Lord, noble friend, Lord Goodman. And for me in a different way, what I think is useful about this from this amendment that he has put in place, is actually just a reminder to the committee and more broadly, that it's actually the Lord Chancellor, the Secretary of State for justice and the Ministry of Justice, who has ownership of the 2005 act.
When it comes to government and a lot of emphasis, understandably, it gets used every day in by clinicians, but not only by clinicians. And I think we shouldn't solely rely on the whether or not a doctor decides with what, as we were discussing in the previous group, what is actually a condition that applies that would be considered to be terminal illness or recoverable. So we need to just make sure we are having the lead department in charge. But I particularly wanted to explore and understand clause 22, which has been grouped in this group.
And I think the introduction of independent advocates is right. I think in I wanted to check out in subsection four, it refers to a qualifying person, but only to subsection two. I assume it's just may need a bit of drafting change. So it also applies to subsection three. But I wanted to get into understanding better for my own education, and somewhat building on what my noble friend Lord Moylan has just put forward in two, three, five. So as it stands, the section one of the Mental Health Act 1983 is actually quite a broad range of conditions apply or can be determined under that from reading other parts of that section and indeed modifications to that bill.
It could be somebody who's mentally impaired due to their alcoholism. It could be other aspects, not simply what might be considered, say, having schizophrenia or similar. What I don't think, though it applies to, is actually somebody with dementia. So I'm trying to understand what who this will work for and what will the independent advocate do. And indeed it's quite not nebulous. That's not right. It's quite high level. What is set out in clause 22. It it's simply at the beginning that the Secretary of State must, by regulations, make provision as to the appointment of persons as independent advocates.
It then goes on to say, it may be for this, it may be for that. And I just wanted to get a sense of what it is anticipated, what really the independent advocate will do. Now, last week I put forward, I think an independent advocate should be there face to face with the person they're supposed to be representing. I'm not going to go over that again, but I wanted to have what it is that we expect in more detail, candidly, than we're seeing in this bill.
There is a risk that people may start to become advocates. And I'm concerned about that. So I this is more an exploratory trying to understand what's in the mind of the sponsors of the bill when it comes to what this will happen, but also some clarity, ideally from the Minister on who they think this will cover, particularly thinking of who a qualifying person is and what they what they anticipate that role may be. And for that, while I appreciate we will come back to amendments to clause 22 later, I think it's just useful to get a certain amount of understanding about what is envisaged at this point.
But otherwise I have some sympathy with the amendment tabled by my noble friend. Lord Moylan 235.
15:34
Baroness Berridge (Conservative)
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Baroness Berridge (Conservative)
My Lords, I rise to support amendment 107 and just wish to make amendment 107 and just wish to make a few questions regarding this amendment. Firstly, along with my amendment. Firstly, along with my noble friend Lady Coffey, I note that when the noble Lord Lord Carlile brought forth his bring back the judge clauses that the MCA exited the bill under that requirement, and in relation to the MCA, it was useful to hear the the eloquent speech of the noble Lady, Lady Cass, in relation to the evidence of the Chief Medical Officer, because I think it's one of those things when you have someone so familiar like that, to actually ask them, when was the last time you did an MCA assessment? I think would also be useful for us to know that she's put that very eloquently.
But in relation to the comments by the noble and learned Lady, Lady Butler-sloss. And this is something that again arose in a previous group, which is the situation of the different statutory regimes of the Mental Health Act and the Mental Capacity Act. Now, these are not even now just separate, because when one looks at the considerations I served on your Lordships' House select Committee on the Mental Health Bill, and one of the first things we had to look at is the situation, particularly in Northern Ireland, where they have chosen to fuse this, these parts of the law.
And that was something that was not part of the independent review by Simon Wesley, but that would have been one of the options at that time, because there is this overlap between the jurisdictions. So I know that the noble Lady, the Minister said in relation to the previous group, if I'm silent, that's OK. But I do want to say that and perhaps ask the noble and learned Lord to invite the noble and learned Lady, Lady Butler-sloss to the meeting that's planned for next week with Alex Ruck-keene KC.
Because I don't think at the moment it is as I don't think at the moment, it's as clear as that that we have patients under one regime and then patients under another regime, because of course, when you're detained under the Mental Health Act, one of the basis of that, when you are wanting potentially to take your own life, is you are under the prevention of suicide regime as a psychiatrist and as clinicians there. But under this act, obviously you're not. And so the the clinicians are asking for that clarity.
So I do hope that we will be able to come back to your Lordships House after the meeting next week with that clarity. But I also hope that the sponsor of the bill could also outline I, I am surprised that we are still talking about this because, as I say, the Royal College of Psychiatrists have been raising this issue since November 2024 and to to to be here today, not necessarily not have the amendments that could deal with their concerns, could have truncated the debate.
And we've had this discussion in relation to the advertising amendments. Why are we at this stage of the bill with concerns from professional bodies and no amendments, even though the noble and learned Lord has said there will be moments forthcoming, a year or more has gone since these concerns have been raised, I do hope he'll be able to clarify why at this stage now, and I think it is imperative that we see these amendments at Committee stage.
But in relation to the comments by the noble and learned Lady, Lady Butler-sloss. And this is something that again arose in a previous group, which is the situation of the different statutory regimes of the Mental Health Act and the Mental Capacity Act. Now, these are not even now just separate, because when one looks at the considerations I served on your Lordships' House select Committee on the Mental Health Bill, and one of the first things we had to look at is the situation, particularly in Northern Ireland, where they have chosen to fuse this, these parts of the law.
And that was something that was not part of the independent review by Simon Wesley, but that would have been one of the options at that time, because there is this overlap between the jurisdictions. So I know that the noble Lady, the Minister said in relation to the previous group, if I'm silent, that's OK. But I do want to say that and perhaps ask the noble and learned Lord to invite the noble and learned Lady, Lady Butler-sloss to the meeting that's planned for next week with Alex Ruck-keene KC.
Because I don't think at the moment it is as I don't think at the moment, it's as clear as that that we have patients under one regime and then patients under another regime, because of course, when you're detained under the Mental Health Act, one of the basis of that, when you are wanting potentially to take your own life, is you are under the prevention of suicide regime as a psychiatrist and as clinicians there. But under this act, obviously you're not. And so the the clinicians are asking for that clarity.
So I do hope that we will be able to come back to your Lordships House after the meeting next week with that clarity. But I also hope that the sponsor of the bill could also outline I, I am surprised that we are still talking about this because, as I say, the Royal College of Psychiatrists have been raising this issue since November 2024 and to to to be here today, not necessarily not have the amendments that could deal with their concerns, could have truncated the debate.
And we've had this discussion in relation to the advertising amendments. Why are we at this stage of the bill with concerns from professional bodies and no amendments, even though the noble and learned Lord has said there will be moments forthcoming, a year or more has gone since these concerns have been raised, I do hope he'll be able to clarify why at this stage now, and I think it is imperative that we see these amendments at Committee stage.
15:38
Earl Howe (Conservative)
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Earl Howe (Conservative)
My Lords, before she rises to speak, I have a question for the Minister about workability arising from one of the amendments included from one of the amendments included in this debate in his amendment. 581 a my noble friend Lord 581 a my noble friend Lord Sandhurst has 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's 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 my noble friend has described would require specific guidance to be issued by the government over and above the guidance already issued under the guidance already issued under the Mental Capacity Act.
For example, where there's 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 my noble friend has described would require specific guidance to be issued by the government over and above the guidance already issued under the guidance already issued under the Mental Capacity Act.
15:39
Baroness Berridge (Conservative)
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Baroness Berridge (Conservative)
My Lords, let me start by >> My Lords, let me start by thanking all noble Lords for their contributions today on mental contributions today on mental capacity and eligibility. As usual, I will keep my comments limited to those amendments on which the government has major legal, technical or operational workability concerns. And indeed, if I don't refer to them clearly that is not the case as was just suggested. I did want to make a point to the noble Lady Baroness alone, who asked about consideration about compliance with EC, and it's probably helpful for me to re-establish the consideration about that, that it's the role of the government.
And this is what I'm doing is to highlight where there's a risk of issues in respect of the EC. However, it is for the House to decide if policy choices might create a risk whether that amount of risk is acceptable or not. So I think the other thing that if it's helpful to the noble Lady is that if it's found that primary legislation is incompatible, of course there could be a declaration of that incompatibility does not invalidate legislation.
I think that's probably the main point I'd really want to emphasise, but this is ultimately a matter for decision for the House with regard to for the House with regard to amendments one, one seven and 892. In the name of the noble Lady Baroness Hollins to remove clause
And this is what I'm doing is to highlight where there's a risk of issues in respect of the EC. However, it is for the House to decide if policy choices might create a risk whether that amount of risk is acceptable or not. So I think the other thing that if it's helpful to the noble Lady is that if it's found that primary legislation is incompatible, of course there could be a declaration of that incompatibility does not invalidate legislation.
I think that's probably the main point I'd really want to emphasise, but this is ultimately a matter for decision for the House with regard to for the House with regard to amendments one, one seven and 892. In the name of the noble Lady Baroness Hollins to remove clause
15:41
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
three and insert a new clause that requires the Secretary of State to make regulations which establish an make regulations which establish an alternative framework for assessing and determining determining capacity based on a psychological assessment, rather than reliance on assessment, rather than reliance on the Mental Capacity Act. How to make that assessment on capacity and noble Lords have referred to and noble Lords have referred to this. It is a policy choice and therefore it is 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 with regard to amendment 892, amend that amendment would mean that the majority of provisions under the bill could not come into force until the regulations under clause three were made. This would make the backstop provision in clause 58 four ineffective. Turning to amendment 108, which has been tabled by my noble friend Lord Hunt of Kings Heath, this amendment introduces 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. Turning to amendment 119 in the name of the noble Lady Baroness Grey-Thompson, this would, it appears, introduce a separate specialist capacity assessment process for adults with a learning disability. This does depart 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. A specialist assessors would need to be identified.
House may wish to note that the amendment restricts any publicly funded provider from undertaking the mental capacity assessment. That 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 terms like relevant professional regulator, which could lead to uncertainty into how the legislation is applied. My Lords Amendments 117892108 and 119 would all involve introducing differential treatment by treating different groups of people, by treating different groups of people differently.
As such, they could give rise to legal challenge on the basis of obligations. Specifically article 14, which prohibits discrimination when read with article eight, any differential treatment, as I said more broadly earlier, would need to be objectively and reasonably justified in order to comply with each obligations. The turning to amendment 235 in the name of the noble Lord Lord Moylan. The effect of this amendment would be that certain groups of people, as the noble Lord said, would not be able to make a valid first declaration.
This could exclude people with learning disabilities. Mental disorders. As per section one of the Mental Health Act 1983, or 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 from accessing assisted dying. The definition of mental disorder in the Mental Health Act is extremely broad and will include those with conditions like ADHD, dyslexia, anxiety and sleep disorders.
The House may wish to note that these groups would be excluded, even if their condition has no impact on their ability to fully understand the relevant information. And on to this point, the noble Lord, Lord Harper, raised the question about the Mental Health Act and perhaps to follow on from what I've just said, I could emphasise that under that act condition, capacity is decision specific. To put it in the way that that I think is, is most clearly put, a person may lack capacity to make one decision, but still have the capacity to make another.
And I think perhaps the main thing for me in respect of the noble Lords question is the act does not make global judgements. It requires capacity to be assessed in relation to particular decisions, rather than reference to. And I hope I'm not taking the noble Lord's words inappropriately, rather than with reference to any scale in respect of a condition. If I could, just to return back to amendment two. Three. Five. If accepted, this could be challenged on the basis of excluding people with learning disabilities, mental disorders or autism may not be justified under article 2 or 8 of the OECD and or may be unjustified discrimination under article 14.
As I already noted, any differential treatment would need to be objectively and reasonably justified in order to comply with EC obligations. The noble Lady Baroness Coffey to the point that the noble Lady raised. Perhaps I could say if a person lacks capacity, a decision can be made to give life sustaining treatment in their best interests. Under the Mental Capacity Act 2005. But if a person lacks capacity for life sustaining treatment, then they are unlikely to have capacity for an assisted death.
For the other amendments in this group, where I do make no comment, as I said earlier, any workability concerns
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are likely to be less significant. Mine was actually in 110 was
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Mine was actually in 110 was basically saying there's a new section in waiting. What is the government's intention about that government's intention about that new section and waiting because my amendment will put it in place in amendment will put it in place in capacity of this act. And I want to try and understand. Also, I don't think the Minister has actually addressed any of my questions about clause 22. I'd be grateful if she could give it some thought and perhaps write to me.
Or perhaps the Justice Minister may be better placed to write to me on that particular matter, because I really raised this because it is stamp art, and I wanted to get a better understanding without having the need to table lots of amendments to clause 22. When we get to it later.
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I'm sure that both myself and my noble friend will be very pleased together, separately, or one of us to reply to the noble Lady.
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to reply to the noble Lady. Might, I might I deal with the issues raised in this debate under the following heads. First of all, the following heads. First of all, what's the correct test and legal framework to apply in relation to 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? And then thirdly, what about clause 22, which is the independent advocate's provision? First of all, 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 has also got to have a clear, settled and informed wish to end their own life, and has had to make that decision to end their own life voluntarily, and has not been coerced or pressured by any other person into making it. And those last two protections 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. Question should we change that assumption? Well, there are two big proposals in front of one.
First of all, amendment 115, in the name of the Baroness Finlay of Llandaff and supported in particular by the Viscount Colville of Culross, who made a speech in favour of it. And subsection one 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. Could I read that again? For those who didn't get it first time round in this act, this is the proposal.
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. Now, reading that that looks almost
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 with regard to amendment 892, amend that amendment would mean that the majority of provisions under the bill could not come into force until the regulations under clause three were made. This would make the backstop provision in clause 58 four ineffective. Turning to amendment 108, which has been tabled by my noble friend Lord Hunt of Kings Heath, this amendment introduces 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. Turning to amendment 119 in the name of the noble Lady Baroness Grey-Thompson, this would, it appears, introduce a separate specialist capacity assessment process for adults with a learning disability. This does depart 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. A specialist assessors would need to be identified.
House may wish to note that the amendment restricts any publicly funded provider from undertaking the mental capacity assessment. That 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 terms like relevant professional regulator, which could lead to uncertainty into how the legislation is applied. My Lords Amendments 117892108 and 119 would all involve introducing differential treatment by treating different groups of people, by treating different groups of people differently.
As such, they could give rise to legal challenge on the basis of obligations. Specifically article 14, which prohibits discrimination when read with article eight, any differential treatment, as I said more broadly earlier, would need to be objectively and reasonably justified in order to comply with each obligations. The turning to amendment 235 in the name of the noble Lord Lord Moylan. The effect of this amendment would be that certain groups of people, as the noble Lord said, would not be able to make a valid first declaration.
This could exclude people with learning disabilities. Mental disorders. As per section one of the Mental Health Act 1983, or 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 from accessing assisted dying. The definition of mental disorder in the Mental Health Act is extremely broad and will include those with conditions like ADHD, dyslexia, anxiety and sleep disorders.
The House may wish to note that these groups would be excluded, even if their condition has no impact on their ability to fully understand the relevant information. And on to this point, the noble Lord, Lord Harper, raised the question about the Mental Health Act and perhaps to follow on from what I've just said, I could emphasise that under that act condition, capacity is decision specific. To put it in the way that that I think is, is most clearly put, a person may lack capacity to make one decision, but still have the capacity to make another.
And I think perhaps the main thing for me in respect of the noble Lords question is the act does not make global judgements. It requires capacity to be assessed in relation to particular decisions, rather than reference to. And I hope I'm not taking the noble Lord's words inappropriately, rather than with reference to any scale in respect of a condition. If I could, just to return back to amendment two. Three. Five. If accepted, this could be challenged on the basis of excluding people with learning disabilities, mental disorders or autism may not be justified under article 2 or 8 of the OECD and or may be unjustified discrimination under article 14.
As I already noted, any differential treatment would need to be objectively and reasonably justified in order to comply with EC obligations. The noble Lady Baroness Coffey to the point that the noble Lady raised. Perhaps I could say if a person lacks capacity, a decision can be made to give life sustaining treatment in their best interests. Under the Mental Capacity Act 2005. But if a person lacks capacity for life sustaining treatment, then they are unlikely to have capacity for an assisted death.
For the other amendments in this group, where I do make no comment, as I said earlier, any workability concerns
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are likely to be less significant. Mine was actually in 110 was
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Mine was actually in 110 was basically saying there's a new section in waiting. What is the government's intention about that government's intention about that new section and waiting because my amendment will put it in place in amendment will put it in place in capacity of this act. And I want to try and understand. Also, I don't think the Minister has actually addressed any of my questions about clause 22. I'd be grateful if she could give it some thought and perhaps write to me.
Or perhaps the Justice Minister may be better placed to write to me on that particular matter, because I really raised this because it is stamp art, and I wanted to get a better understanding without having the need to table lots of amendments to clause 22. When we get to it later.
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I'm sure that both myself and my noble friend will be very pleased together, separately, or one of us to reply to the noble Lady.
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to reply to the noble Lady. Might, I might I deal with the issues raised in this debate under the following heads. First of all, the following heads. First of all, what's the correct test and legal framework to apply in relation to 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? And then thirdly, what about clause 22, which is the independent advocate's provision? First of all, 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 has also got to have a clear, settled and informed wish to end their own life, and has had to make that decision to end their own life voluntarily, and has not been coerced or pressured by any other person into making it. And those last two protections 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. Question should we change that assumption? Well, there are two big proposals in front of one.
First of all, amendment 115, in the name of the Baroness Finlay of Llandaff and supported in particular by the Viscount Colville of Culross, who made a speech in favour of it. And subsection one 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. Could I read that again? For those who didn't get it first time round in this act, this is the proposal.
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. Now, reading that that looks almost
15:52
Lord Falconer of Thoroton (Labour)
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Lord Falconer of Thoroton (Labour)
identical to the existing provisions, and I'm quite unable to provisions, and I'm quite unable to see what the difference that is being proposed there is. Could I go being proposed there is. Could I go on with this particular amendment? Let me finish before you come as Let me finish before you come as far as the as far as the. Or a lot of this is concerned, it is similar to what is already in the act. There are a number of particular questions spelt out at subsection, subsection six of the draft.
For example, there should be discussion of the relevant and available care and treatment, including palliative care, hospice or other care by way of example. So what is being said is in testing capacity, there has to be a consideration of all of the detailed factual material that might be relevant to such a decision. Noble Lords will recall that both the independent doctor and the assessing doctor, the coordinating doctor and the independent doctor have got to consider and discuss with the patient almost all of those issues.
For example, they have got to explain 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 and then the nature of the substance to be provided. The point I am making in relation to this is different between what the noble Baroness Baroness Finlay is proposing in her amendment and the existing law on mental capacity looks incredibly thin. The difference is very, 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's already provided for in the bill. I ask the question, is it sensible for there to be two similar but different capacity tests operating both in the context of the health service, but also operating in the context of what the panel has got to decide? Sir Christopher Witty said he was concerned about the idea that there were two different with fine legal distinctions applying, particularly as he emphasised that the decision on capacity, whilst it would be a different question, for example, should I have an assisted death in one room and in the next room somebody making a decision, should I have the ventilation removed in the later stages of my motor neurone disease? They are.
And the noble Lord, Lord Wolfson, I'm glad to see his place has made the distinction between an assisted death on the one hand and the removal of treatment. But for the patient involved. They both involve the certainty of death. In my view, having listened very, very carefully and read a lot about this and talked a lot around it, the idea that there should be two separate tests applying is, in my view, damaging and confusing and would, in my view, be wrong.
So I am not in favour of the helpful because it's detailed and it sets out what the noble Baroness has in mind. I'm not in favour of that particular change to the Mental Capacity Act, which. Yes, yes, there are problems about its enforcement. It is patchy in its enforcement. But what we are talking about here is what is the legal framework within which the decision has to be made. The other the other aspect of this has got to be will it be properly enforced.
People are saying, well, it won't be properly enforced. Look at the way decisions are made, sometimes badly. Now that is why, because of the magnitude of the decision that is being made, that we have a coordinating doctor, an independent doctor, and then the panel having to make sure at every stage that the position has been dealt with. Could I go on to the other. Sorry, sorry, sorry.
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Finally, before the noble Lord sits down, because I waited and sits down, because I waited and waited until he had finished. Does he recognise, though, that the he recognise, though, that the Mental Capacity Act as written has no test at the start of it? Because no test at the start of it? Because the beginning of the act is that there is a presumption of capacity, there is a presumption of capacity, and the danger is the presumption of capacity.
And that is why the wording of this amendment is using the language of the Mental Capacity Act, and it is to close that gap and avoid the chasm of presuming that there is capacity when there is not. And I gave the example briefly of those with frontal lobe disorder. But you also see that disordered thinking in people who've got severe electrolyte disturbance. And when you correct it, that is corrected, but not the problem with frontal lobe disorder is that it's usually irreversible.
But can I can may I finish my list of questions and then come back? I would ask, could the noble and learned Lord write to us and tell us who Chris Whitty spoke to before giving evidence to the committee for his statement that the Mental Capacity Act was adequate? Because I'm surprised that if he had spoken to the clad group and those involved in the National Mental Capacity Forum, that they would have said it was adequate because they are the people who were And I believe practitioners have found that a perfectly adequate framework within which to operate.
Secondly, the the the the the example she gives, the frontal lobe problems for, for example, which this is not a problem about presumption. It's a problem that in certain cases capacity is difficult to identify. And that's got to be addressed under the Assisted Dying Act because the two doctors and the panel have got to be satisfied that there is capacity. As it happens, they've also got to be satisfied that it's a firm and settled view of the person, that that's what they want.
Before Baroness Cass comes at me, just on the question of could I, could I, could I write to Sir Chris Whitty? No, I am not. I have this is I'm using this language, but I have no control over the reason I find his evidence important and material is because it is not as if there is a group of doctors who are particularly concerned with the capacity issue. A lot of doctors have got to deal with the capacity issue, whether their capacity experts or not, because they've got to they've got to they've got to be able to evaluate what their patients are wanting and whether they're capable of making the decision.
And it seems to me Chris Whitty, the Chief Medical Officer of the government, is somebody who is well placed to say what the best way that these capacity decisions can best be taken. The reason I'm saying no to writing to him, because the Baroness Finlay and myself are in exactly the same position. We can
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both write to him and we both have no control over it. Baroness Cass I would never come at the noble and learned Lord, for at the noble and learned Lord, for whom I've got the greatest respect. No, just to say that we we defacto No, just to say that we we defacto have to make changes to the Mental Capacity Act in application of this, Capacity Act in application of this, because where a person doesn't have capacity, you can make the you would then make a best interest decision.
And clearly we're not doing that in this case. So you know already we are deviating from how the Mental Capacity Act would work normally in relation to medical procedures, because where you think the medical procedure is the right thing, either the patient makes that decision or someone else you know would make it as best interest for them. So we are already deviating. Just the second thing I'd say very briefly is people will be being trained specifically to carry out this work. So it's it's you know, they they will we've got have many years, four years to train people to do this appropriately.
And so I don't think the burden of a slightly different training in this setting compared to capacity in other situations would be too burdensome
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for practitioners. First. First of all, on the point about that the act does not point about that the act does not apply. You're absolutely right when you say best interests never comes you say best interests never comes into it, because if the patient does not have capacity, that's the does not have capacity, that's the end of the matter. They cannot have an assisted death. It is worth pointing out that what what the bill says is, in this act, references to a person having capacity are to be read in accordance with the Mental Capacity Act 2005.
So all that this bill is doing is incorporating the reference to capacity, not to the second half of the bill that sets out the Mental Capacity Act, which sets out what happens if you don't
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have capacity. Sorry. Thank the noble and learned Lord,
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Thank the noble and learned Lord, can you just enlighten us if we're not going, if we, the noble and learned Lord is not going to write learned Lord is not going to write to Sir Chris Whitty to find out further. Can you remind us on what further. Can you remind us on what to what evidence did he refer when to what evidence did he refer when he gave his judgement as being that the MCA 2005 the Mental Capacity Act was suitable for the purposes of this bill? What evidence did he give?
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He gave evidence both in the House of Lords Select Committee and House of Lords Select Committee and the Commons Committee, and he gave his opinion that he thought having his opinion that he thought having two different tests for mental capacity was a bad idea, and he capacity was a bad idea, and he gave as one of the particular reasons for that, the fact that it would be inappropriate and difficult for doctors applying the capacity test in one room where it was about the withdrawal of treatment and in the other an assisted death, that was the material he relied on.
We are all each capable of evaluating that argument for ourselves. And if the Baroness Lawlor or the Baroness Finlay would like to interrogate Sir Chris Whitty further in relation to be my guest.
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Lord sits down. I did say I would come back, first of all for the information for the House. I've the information for the House. I've had confirmation that he did not speak to the chair of the National Mental Capacity Forum before giving Mental Capacity Forum before giving evidence he he may have bypassed her. So be it. But I do think that her. So be it. But I do think that there is another aspect. The doctors who are doing the doctors who are doing the assessments are going to be trained.
They're not just going to be any doctor anywhere. Doing these assessments without specific training. So if they are going to be trained, it's difficult to understand why the noble Lord does not think that we should make sure that their training is as watertight as possible, and that they are best equipped to assess capacity as possible, and that may be at a higher level than other doctors who are not involved in
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this process. I do think they should be properly trained. I'm very, very properly trained. I'm very, very strongly in favour of that, but that with the greatest respect to the Baroness Finlay appears to me to be a completely different to be a completely different question from what the right legal framework should be. And that's what we're talking about. That's what we're talking about.
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what we're talking about. Before the noble Lord sits down again. Could he clarify whether the legal framework that we're talking legal framework that we're talking about in the bill is to be applied
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by the assessing doctors or not? The framework that is to be applied by the coordinating doctor applied by the coordinating doctor and the independent doctor is the framework for assessing capacity framework for assessing capacity under the Mental Capacity Act. And that is what the bill says. And what I am saying. I am resisting the changes to in relation to the the changes to in relation to the Baroness Findlay's amendments. 115 could I, could I go on? Could I address.
Sorry, the the the Baroness Hollins amendments. What Baroness Hollins is proposing is something rather different from that which the Baroness Finlay is proposing. She says that the Secretary of State must, by regulations, establish a framework for assessing and determination of capacity. She says that having capacity is to be read in accordance with that framework and not the framework under the Mental Capacity Act. And she says that regulations must involve setting out an evidence based methodology, require that any assessment 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 the splendidly detailed amendment that she has put forward, is that what she is saying is 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, which are, first of all, the Mental Capacity Act is tried and tested in dealing with the question, are you able to make that decision? Secondly, and I am glad that the noble Baroness Baroness Finlay gave me the opportunity to answer this.
The people, the coordinating doctor and the independent doctor will require training. The panel will have experience in making these decisions. They will be the people who will be able and experienced to make these decisions. And third, hold on. And thirdly, they will be doing so. Having received proper
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advice and training, I apologise. Yes. A bespoke decision making
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A bespoke decision making framework would initially be legally untested, but the same is true of the Mental Capacity Act, true of the Mental Capacity Act, which, as my noble friend Lady Kast said, has never been operationalised or judicially tested in context of assisted dying. tested in context of assisted dying. And I also, you know, consider that the idea that the, the, the, the, the two doctors involved would be able to be trained, the kind of, of complexity that I was describing is not something that can simply be learned through a little extra module.
This is years of experience to help people to really develop the understanding and ability to make these kinds of assessments. So I would just make those points. I would also say that the existence of bespoke decision making frameworks is not novel in UK law. The Mental Health Act already operates in parallel with the Mental Capacity Act, recognising that certain contexts require a different approach to decision making.
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I don't want to be disrespectful. But that. Was just. A repeat of the speech that's
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A repeat of the speech that's already been made. It didn't contain a question, and I completely respect the arguments that you've made that the Baroness that you've made that the Baroness Hollins has made. But the way I mean, it's only really questions to me rather than, as it were, a speech in the middle of my speech. And I really apologise for having to say that. But you haven't really
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to say that. But you haven't really asked me a question. So do you mind if I. A question then, I mean, does the noble Lord agree that there are already bespoke decision making frameworks that and that this is not novel in UK law?
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Agree that there are bespoke making decision processes in the. making decision processes in the. Our existence is not the law, it's how it works in practice basically, how it works in practice basically, and through codes of practice, it will be possible to develop appropriate methods of dealing with it. Baroness Lawlor.
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it. Baroness Lawlor. Thank you very much. And I have a difficulty with with the answer a difficulty with with the answer of the noble Lord in respect of Mental Capacity Act, because yes, he is absolutely right to say that it if you don't have capacity and you can't avail of this, but what the mental capacity also is also says is you shouldn't be judged to have not to have capacity if and so Lord Hunt's 107 if you can't, if I paraphrase, retain relevant information over a period of time and that's a paraphrase or my amendment.
If you have to have complex decisions, if you have if you you you can't be judged not to have capacity. If you can understand relevant matters in simplistic or audio or visual or other appropriate to you. Now, to my mind, that suggests that the mental capacity act in making exception exceptions about having capacity is actually unsuitable for this, because we hear all the time about the earlier part, which is yes, your the noble Lord and learned Lord is absolutely right.
But it's those exceptions to the judgement about having capacity that worry me because they are not suitable for this. And so could you. Could the noble Lord say what? Could the noble Lord explain that inconsistency? And in judging capacity a suitable for this
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measure that he's proposing. I'm not sure that I followed all
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I'm not sure that I followed all of the subtlety of that question, but as far as far as far as the as but as far as far as far as the as far as the Mental Capacity Act 2005 is concerned, it is a tried and is concerned, it is a tried and tested framework which is seeking to ensure that the people, for to ensure that the people, for example, doctors who have to make a decision about whether or not somebody is capable of deciding to withdraw treatment, is that patient capable of making that decision? And the doctors will be experienced in doing that.
And the legal tests have worked over the years. The Baroness Finlay is right when she says they're frequently not applied in a correct manner. But where you've got this bill, where the key thing is that there are safeguards, that it will be, those particular problems don't apply. So that's why I am espousing and espousing quite strongly, keeping the same test for the assisted dying bill as in the
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should. Know. My Lords.
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My Lords. Sorry. Yes, but. Might I ask a practical question?
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Might I ask a practical question? What is the noble and learned Lord then going to offer us?
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I am not offering anything in the way of a different framework in the way of a different framework in relation to it. I am more than happy to discuss what sorts of code of practice there should be with people. But, and I say it not because I haven't been listening. I've been listening as hard as I possibly can, but listening does from time to time involve disagreement as well with people. And I apologise for disagreeing, but I do disagree with the two big schemes that have been put by the Baroness Finlay and the Baroness Hollins.
Sorry.
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Yes thank you. I just wondering if I could ask the noble and learned Lord for his help. What do learned Lord for his help. What do I say to people like Tommy Bishop and others who've asked for expertise extra protections in this
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expertise extra protections in this bill? Can I tell them that they'll be safe or not? You can.
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You can. Tell them they will be safe, because the question you are raising in relation to such people raising in relation to such people is, will they be over pressed to have an assisted death? And my answer is no, they will not, because they would have to satisfy a coordinating doctor, an independent doctor, a panel consisting of a judge or a King's Counsel, a psychiatrist and a social worker. And in my view, those protections will provide him with protections.
And I very much hope, if you have the opportunity to speak to him, that you tell him that there are those protections. I am very aware of the fact that in, as it were, normal day to day interchanges with various parts of the system, both how both health and legal people may make people who are disabled feel that their lives are not sufficiently valued. But of all the interactions with the health service, this is the one that will be most protected.
And by most protected, I mean giving most safeguards against somebody in Tommy's position. Could I think I should probably get on if we want to get away. Can I move now to the question of of the various conditions? And this is the noble Lord Lord Moylan position, who is saying, could we not just exclude those conditions under the Mental Health Act, those conditions of autism, and those people with a learning disability for very, very many of these people, they 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.
But I do not believe that they should be excluded altogether in relation to that, because, as has been pointed out by the Baroness Coffey, it's such a wide range of conditions in the Mental Health Act, autism carry covers a very, very wide set of circumstances. Is it right that everybody who is autistic should not have this that right? Learning disabilities includes people who are, for example, dyslexic, if that right is available to people, should it not be available to people who dyslexic.
So I'm not in favour of the suggestion made by the noble Lord Lord Moylan. Could I then deal with the important point raised by the noble Lord, Lord Sandhurst, who draws our attention to clause 25 of the bill, which is deals with the position at the moment of of providing the assistance. That's when the when the, when the, when the drug they're provided the coordinating doctor, it says, must be satisfied at the time the approved substance is provided, that the person to whom it is provided a has capacity, and the noble Lord Lord Sandhurst is raising the question, what happens if he's got doubts in relation to it? Answer he can't be satisfied and that's the end of it.
He has to be satisfied and the words are satisfied. Finally, and I can be short on this. Clause 22. Clause 22 stand apart as noble Lords will know. I have put down on the Order Paper a new clause 22. So, and there's considerable detail in relation to that clause 22 so it would, I think, be wasting the committee's time for me to to talk about the existing 22, when there is already available a detailed clause.
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22 I apologise to the noble Lord
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22 I apologise to the noble Lord if he's already answered the question about my amendment, but I'd be grateful if you'd clarify
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his view of amendment one 115 in relation to the code. If that's. A reference to. Should there be the affirmative
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Should there be the affirmative procedure rather than the negative procedure, can I take that one away? That that seems to me to be not at all an unreasonable request. And can I get back to the house on that?
For example, there should be discussion of the relevant and available care and treatment, including palliative care, hospice or other care by way of example. So what is being said is in testing capacity, there has to be a consideration of all of the detailed factual material that might be relevant to such a decision. Noble Lords will recall that both the independent doctor and the assessing doctor, the coordinating doctor and the independent doctor have got to consider and discuss with the patient almost all of those issues.
For example, they have got to explain 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 and then the nature of the substance to be provided. The point I am making in relation to this is different between what the noble Baroness Baroness Finlay is proposing in her amendment and the existing law on mental capacity looks incredibly thin. The difference is very, 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's already provided for in the bill. I ask the question, is it sensible for there to be two similar but different capacity tests operating both in the context of the health service, but also operating in the context of what the panel has got to decide? Sir Christopher Witty said he was concerned about the idea that there were two different with fine legal distinctions applying, particularly as he emphasised that the decision on capacity, whilst it would be a different question, for example, should I have an assisted death in one room and in the next room somebody making a decision, should I have the ventilation removed in the later stages of my motor neurone disease? They are.
And the noble Lord, Lord Wolfson, I'm glad to see his place has made the distinction between an assisted death on the one hand and the removal of treatment. But for the patient involved. They both involve the certainty of death. In my view, having listened very, very carefully and read a lot about this and talked a lot around it, the idea that there should be two separate tests applying is, in my view, damaging and confusing and would, in my view, be wrong.
So I am not in favour of the helpful because it's detailed and it sets out what the noble Baroness has in mind. I'm not in favour of that particular change to the Mental Capacity Act, which. Yes, yes, there are problems about its enforcement. It is patchy in its enforcement. But what we are talking about here is what is the legal framework within which the decision has to be made. The other the other aspect of this has got to be will it be properly enforced.
People are saying, well, it won't be properly enforced. Look at the way decisions are made, sometimes badly. Now that is why, because of the magnitude of the decision that is being made, that we have a coordinating doctor, an independent doctor, and then the panel having to make sure at every stage that the position has been dealt with. Could I go on to the other. Sorry, sorry, sorry.
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Finally, before the noble Lord sits down, because I waited and sits down, because I waited and waited until he had finished. Does he recognise, though, that the he recognise, though, that the Mental Capacity Act as written has no test at the start of it? Because no test at the start of it? Because the beginning of the act is that there is a presumption of capacity, there is a presumption of capacity, and the danger is the presumption of capacity.
And that is why the wording of this amendment is using the language of the Mental Capacity Act, and it is to close that gap and avoid the chasm of presuming that there is capacity when there is not. And I gave the example briefly of those with frontal lobe disorder. But you also see that disordered thinking in people who've got severe electrolyte disturbance. And when you correct it, that is corrected, but not the problem with frontal lobe disorder is that it's usually irreversible.
But can I can may I finish my list of questions and then come back? I would ask, could the noble and learned Lord write to us and tell us who Chris Whitty spoke to before giving evidence to the committee for his statement that the Mental Capacity Act was adequate? Because I'm surprised that if he had spoken to the clad group and those involved in the National Mental Capacity Forum, that they would have said it was adequate because they are the people who were And I believe practitioners have found that a perfectly adequate framework within which to operate.
Secondly, the the the the the example she gives, the frontal lobe problems for, for example, which this is not a problem about presumption. It's a problem that in certain cases capacity is difficult to identify. And that's got to be addressed under the Assisted Dying Act because the two doctors and the panel have got to be satisfied that there is capacity. As it happens, they've also got to be satisfied that it's a firm and settled view of the person, that that's what they want.
Before Baroness Cass comes at me, just on the question of could I, could I, could I write to Sir Chris Whitty? No, I am not. I have this is I'm using this language, but I have no control over the reason I find his evidence important and material is because it is not as if there is a group of doctors who are particularly concerned with the capacity issue. A lot of doctors have got to deal with the capacity issue, whether their capacity experts or not, because they've got to they've got to they've got to be able to evaluate what their patients are wanting and whether they're capable of making the decision.
And it seems to me Chris Whitty, the Chief Medical Officer of the government, is somebody who is well placed to say what the best way that these capacity decisions can best be taken. The reason I'm saying no to writing to him, because the Baroness Finlay and myself are in exactly the same position. We can
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both write to him and we both have no control over it. Baroness Cass I would never come at the noble and learned Lord, for at the noble and learned Lord, for whom I've got the greatest respect. No, just to say that we we defacto No, just to say that we we defacto have to make changes to the Mental Capacity Act in application of this, Capacity Act in application of this, because where a person doesn't have capacity, you can make the you would then make a best interest decision.
And clearly we're not doing that in this case. So you know already we are deviating from how the Mental Capacity Act would work normally in relation to medical procedures, because where you think the medical procedure is the right thing, either the patient makes that decision or someone else you know would make it as best interest for them. So we are already deviating. Just the second thing I'd say very briefly is people will be being trained specifically to carry out this work. So it's it's you know, they they will we've got have many years, four years to train people to do this appropriately.
And so I don't think the burden of a slightly different training in this setting compared to capacity in other situations would be too burdensome
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for practitioners. First. First of all, on the point about that the act does not point about that the act does not apply. You're absolutely right when you say best interests never comes you say best interests never comes into it, because if the patient does not have capacity, that's the does not have capacity, that's the end of the matter. They cannot have an assisted death. It is worth pointing out that what what the bill says is, in this act, references to a person having capacity are to be read in accordance with the Mental Capacity Act 2005.
So all that this bill is doing is incorporating the reference to capacity, not to the second half of the bill that sets out the Mental Capacity Act, which sets out what happens if you don't
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have capacity. Sorry. Thank the noble and learned Lord,
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Thank the noble and learned Lord, can you just enlighten us if we're not going, if we, the noble and learned Lord is not going to write learned Lord is not going to write to Sir Chris Whitty to find out further. Can you remind us on what further. Can you remind us on what to what evidence did he refer when to what evidence did he refer when he gave his judgement as being that the MCA 2005 the Mental Capacity Act was suitable for the purposes of this bill? What evidence did he give?
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He gave evidence both in the House of Lords Select Committee and House of Lords Select Committee and the Commons Committee, and he gave his opinion that he thought having his opinion that he thought having two different tests for mental capacity was a bad idea, and he capacity was a bad idea, and he gave as one of the particular reasons for that, the fact that it would be inappropriate and difficult for doctors applying the capacity test in one room where it was about the withdrawal of treatment and in the other an assisted death, that was the material he relied on.
We are all each capable of evaluating that argument for ourselves. And if the Baroness Lawlor or the Baroness Finlay would like to interrogate Sir Chris Whitty further in relation to be my guest.
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Lord sits down. I did say I would come back, first of all for the information for the House. I've the information for the House. I've had confirmation that he did not speak to the chair of the National Mental Capacity Forum before giving Mental Capacity Forum before giving evidence he he may have bypassed her. So be it. But I do think that her. So be it. But I do think that there is another aspect. The doctors who are doing the doctors who are doing the assessments are going to be trained.
They're not just going to be any doctor anywhere. Doing these assessments without specific training. So if they are going to be trained, it's difficult to understand why the noble Lord does not think that we should make sure that their training is as watertight as possible, and that they are best equipped to assess capacity as possible, and that may be at a higher level than other doctors who are not involved in
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this process. I do think they should be properly trained. I'm very, very properly trained. I'm very, very strongly in favour of that, but that with the greatest respect to the Baroness Finlay appears to me to be a completely different to be a completely different question from what the right legal framework should be. And that's what we're talking about. That's what we're talking about.
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what we're talking about. Before the noble Lord sits down again. Could he clarify whether the legal framework that we're talking legal framework that we're talking about in the bill is to be applied
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by the assessing doctors or not? The framework that is to be applied by the coordinating doctor applied by the coordinating doctor and the independent doctor is the framework for assessing capacity framework for assessing capacity under the Mental Capacity Act. And that is what the bill says. And what I am saying. I am resisting the changes to in relation to the the changes to in relation to the Baroness Findlay's amendments. 115 could I, could I go on? Could I address.
Sorry, the the the Baroness Hollins amendments. What Baroness Hollins is proposing is something rather different from that which the Baroness Finlay is proposing. She says that the Secretary of State must, by regulations, establish a framework for assessing and determination of capacity. She says that having capacity is to be read in accordance with that framework and not the framework under the Mental Capacity Act. And she says that regulations must involve setting out an evidence based methodology, require that any assessment 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 the splendidly detailed amendment that she has put forward, is that what she is saying is 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, which are, first of all, the Mental Capacity Act is tried and tested in dealing with the question, are you able to make that decision? Secondly, and I am glad that the noble Baroness Baroness Finlay gave me the opportunity to answer this.
The people, the coordinating doctor and the independent doctor will require training. The panel will have experience in making these decisions. They will be the people who will be able and experienced to make these decisions. And third, hold on. And thirdly, they will be doing so. Having received proper
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advice and training, I apologise. Yes. A bespoke decision making
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A bespoke decision making framework would initially be legally untested, but the same is true of the Mental Capacity Act, true of the Mental Capacity Act, which, as my noble friend Lady Kast said, has never been operationalised or judicially tested in context of assisted dying. tested in context of assisted dying. And I also, you know, consider that the idea that the, the, the, the, the two doctors involved would be able to be trained, the kind of, of complexity that I was describing is not something that can simply be learned through a little extra module.
This is years of experience to help people to really develop the understanding and ability to make these kinds of assessments. So I would just make those points. I would also say that the existence of bespoke decision making frameworks is not novel in UK law. The Mental Health Act already operates in parallel with the Mental Capacity Act, recognising that certain contexts require a different approach to decision making.
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I don't want to be disrespectful. But that. Was just. A repeat of the speech that's
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A repeat of the speech that's already been made. It didn't contain a question, and I completely respect the arguments that you've made that the Baroness that you've made that the Baroness Hollins has made. But the way I mean, it's only really questions to me rather than, as it were, a speech in the middle of my speech. And I really apologise for having to say that. But you haven't really
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to say that. But you haven't really asked me a question. So do you mind if I. A question then, I mean, does the noble Lord agree that there are already bespoke decision making frameworks that and that this is not novel in UK law?
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Agree that there are bespoke making decision processes in the. making decision processes in the. Our existence is not the law, it's how it works in practice basically, how it works in practice basically, and through codes of practice, it will be possible to develop appropriate methods of dealing with it. Baroness Lawlor.
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it. Baroness Lawlor. Thank you very much. And I have a difficulty with with the answer a difficulty with with the answer of the noble Lord in respect of Mental Capacity Act, because yes, he is absolutely right to say that it if you don't have capacity and you can't avail of this, but what the mental capacity also is also says is you shouldn't be judged to have not to have capacity if and so Lord Hunt's 107 if you can't, if I paraphrase, retain relevant information over a period of time and that's a paraphrase or my amendment.
If you have to have complex decisions, if you have if you you you can't be judged not to have capacity. If you can understand relevant matters in simplistic or audio or visual or other appropriate to you. Now, to my mind, that suggests that the mental capacity act in making exception exceptions about having capacity is actually unsuitable for this, because we hear all the time about the earlier part, which is yes, your the noble Lord and learned Lord is absolutely right.
But it's those exceptions to the judgement about having capacity that worry me because they are not suitable for this. And so could you. Could the noble Lord say what? Could the noble Lord explain that inconsistency? And in judging capacity a suitable for this
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measure that he's proposing. I'm not sure that I followed all
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I'm not sure that I followed all of the subtlety of that question, but as far as far as far as the as but as far as far as far as the as far as the Mental Capacity Act 2005 is concerned, it is a tried and is concerned, it is a tried and tested framework which is seeking to ensure that the people, for to ensure that the people, for example, doctors who have to make a decision about whether or not somebody is capable of deciding to withdraw treatment, is that patient capable of making that decision? And the doctors will be experienced in doing that.
And the legal tests have worked over the years. The Baroness Finlay is right when she says they're frequently not applied in a correct manner. But where you've got this bill, where the key thing is that there are safeguards, that it will be, those particular problems don't apply. So that's why I am espousing and espousing quite strongly, keeping the same test for the assisted dying bill as in the
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should. Know. My Lords.
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My Lords. Sorry. Yes, but. Might I ask a practical question?
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Might I ask a practical question? What is the noble and learned Lord then going to offer us?
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I am not offering anything in the way of a different framework in the way of a different framework in relation to it. I am more than happy to discuss what sorts of code of practice there should be with people. But, and I say it not because I haven't been listening. I've been listening as hard as I possibly can, but listening does from time to time involve disagreement as well with people. And I apologise for disagreeing, but I do disagree with the two big schemes that have been put by the Baroness Finlay and the Baroness Hollins.
Sorry.
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Yes thank you. I just wondering if I could ask the noble and learned Lord for his help. What do learned Lord for his help. What do I say to people like Tommy Bishop and others who've asked for expertise extra protections in this
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expertise extra protections in this bill? Can I tell them that they'll be safe or not? You can.
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You can. Tell them they will be safe, because the question you are raising in relation to such people raising in relation to such people is, will they be over pressed to have an assisted death? And my answer is no, they will not, because they would have to satisfy a coordinating doctor, an independent doctor, a panel consisting of a judge or a King's Counsel, a psychiatrist and a social worker. And in my view, those protections will provide him with protections.
And I very much hope, if you have the opportunity to speak to him, that you tell him that there are those protections. I am very aware of the fact that in, as it were, normal day to day interchanges with various parts of the system, both how both health and legal people may make people who are disabled feel that their lives are not sufficiently valued. But of all the interactions with the health service, this is the one that will be most protected.
And by most protected, I mean giving most safeguards against somebody in Tommy's position. Could I think I should probably get on if we want to get away. Can I move now to the question of of the various conditions? And this is the noble Lord Lord Moylan position, who is saying, could we not just exclude those conditions under the Mental Health Act, those conditions of autism, and those people with a learning disability for very, very many of these people, they 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.
But I do not believe that they should be excluded altogether in relation to that, because, as has been pointed out by the Baroness Coffey, it's such a wide range of conditions in the Mental Health Act, autism carry covers a very, very wide set of circumstances. Is it right that everybody who is autistic should not have this that right? Learning disabilities includes people who are, for example, dyslexic, if that right is available to people, should it not be available to people who dyslexic.
So I'm not in favour of the suggestion made by the noble Lord Lord Moylan. Could I then deal with the important point raised by the noble Lord, Lord Sandhurst, who draws our attention to clause 25 of the bill, which is deals with the position at the moment of of providing the assistance. That's when the when the, when the, when the drug they're provided the coordinating doctor, it says, must be satisfied at the time the approved substance is provided, that the person to whom it is provided a has capacity, and the noble Lord Lord Sandhurst is raising the question, what happens if he's got doubts in relation to it? Answer he can't be satisfied and that's the end of it.
He has to be satisfied and the words are satisfied. Finally, and I can be short on this. Clause 22. Clause 22 stand apart as noble Lords will know. I have put down on the Order Paper a new clause 22. So, and there's considerable detail in relation to that clause 22 so it would, I think, be wasting the committee's time for me to to talk about the existing 22, when there is already available a detailed clause.
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22 I apologise to the noble Lord
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22 I apologise to the noble Lord if he's already answered the question about my amendment, but I'd be grateful if you'd clarify
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his view of amendment one 115 in relation to the code. If that's. A reference to. Should there be the affirmative
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Should there be the affirmative procedure rather than the negative procedure, can I take that one away? That that seems to me to be not at all an unreasonable request. And can I get back to the house on that?
16:19
Baroness Berger (Labour)
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Baroness Berger (Labour)
Debate for. >> Just over two hours? And I think some very, very significant issues have been raised. I think it's just have been raised. I think it's just worth outlining very briefly why why this group matters, and particularly in the context of what's happening beyond this place, what's happening beyond this place, and certainly considerations and representations that are being made in the media. It was last week that Esther Rantzen told us that this bill applies only to terminally ill people like me.
The campaign, as we hear from, provide us reassurance that it would obviously be something that they, and I quote, freely choose and have fought for, and there are noble Lords have said a Second Reading in this place that I quote, I want that choice for myself. It centres those who have no doubts of their capacity to make this decision, and no doubt that they would freely choose. But it removes from the room people that are not like us, and it's 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.
Because in particular of the inadequacies of the Mental Capacity Act, it is really clear that there remains significant concern about the relationship between the existing test in the Mental Capacity Act, which was brought forward in 2005, and the decision to have an assisted death under this bill. And at the risk of stating the obvious, it was a decision to have an assisted death was not in contemplation for the architects of that act back in 2005. So it's not surprising that we have heard such a range of questions and concerns, both from noble Lords and from experts outside this House, including the Royal College of Psychiatrists.
I listened closely to the remarks made by my noble and learned friends to Baroness Finlay, and it may be helpful for laws to be aware that back in the other place, the desire to use the Mental Capacity Act was largely pragmatic. It's what doctors are used to, not that it's the best framework for this decision. And I reflect on the comments from the health Minister, Stephen Kinnock, who said in the Commons it was it's a known quantity. It's a well-established piece of legislation doing things differently would cause, and I quote, operational challenges and confusion and that a different approach would add complexity.
So what we have here in this bunch of amendments are pragmatic, specific proposals of adjustments to address what we're trying to do within the constraints of the legislation. And perhaps this would have all been ironed out if we'd gone through some proper pre-legislative scrutiny, as we would have done had this been a government bill. I in particular acknowledge the expertise of Baroness Hollins, Baroness Cass and Baroness Finlay in this debate, and the debate has raised some very 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, whether that's sufficient, a duty to support decision making, which risks becoming a duty to facilitate a decision to die, and also relying on time specific capacity.
I have in front of me so many different important points that have been raised by noble Lords from across the House and in the time we have available, I'm not going to mention all of them. So I hope that noble Lords will forgive me for that, but I think it is worth reflecting on. On just a handful, it was Baroness Butler-Sloss who raised the very important concerns about people with variable dementia and people who are sectioned. It was the Bishop of Newcastle who highlighted the particular biases experienced by people with learning disabilities and the discrimination they face.
It was Baroness Finlay who talked about the need for clarity for doctors and and how we can at least endeavour to try and make the Mental Capacity Act fit for purpose in this bill. And Baroness Cass, who again reminded us all that assisted death is not a medical treatment. Again, I would just reflect because I think it's really important on the representations from Baroness Baroness Grey-Thompson, who again reflected on the concerns raised by the disabled community and the particular challenges that aren't addressed in this bill.
Given that my noble and learned friend, Lord Falconer has indicated in his response that he will defend the Mental Capacity Act as the foundation for this bill, I think it is disappointing that he has dismissed the specific provisions that could be set aside and could make a difference. I welcome the intervention that my noble and learned friend made in an earlier intervention that he would bring forward amendments which would introduce additional assessment in particular cases. But that question is obviously different to that question that's been asked today, which is about how we can be confident that the test itself is the right one.
I was particularly concerned by the response from my noble and learned friend to the question from Baroness Grey-Thompson about whether a disabled person would be safe, he said that no one would be over pressed into making a decision to end their life. I think for many of us here, it's not about being over pressed. We don't want anyone to feel pressed at all. I hope 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 in this place about these issues before Christmas, and in order to expedite our deliberations, I hope that we're not going to have to wait until the Report stage and that the amendments that 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 even quicker to ensure that on the basis that, as my noble and noble and learned friend has outlined, he's not prepared to accept any of the amendments proposed today in this group.
But we can see what he's going to propose as an alternative. And again, in light of the later groups that we have, again, I know that everyone is concerned that we should expedite our deliberations, and that would help us all enormously. And with that, I beg to leave to withdraw amendments 107, 108, 109.
**** Possible New Speaker ****
Before what I said over pressed, I did not mean over pressed. I meant pressed, and I apologise for
**** Possible New Speaker ****
saying over pressed. Is it your Lordships. Pleasure that this amendment be withdrawn? Amendment is by leave withdrawn? Amendment is by leave withdrawn. Amendment 108 not moved. withdrawn. Amendment 108 not moved. Amendment 109 110 not moved. We now come to the group of amendments come to the group of amendments beginning with amendment 110 A in clause three one, amendment 110 A Lord Blencathra.
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My Lord, I rise to speak to my amendment 110 A, which inserts in amendment 110 A, which inserts in clause three a requirement that where a person is ordinarily resident in a registered care home resident in a registered care home or nursing home, a registered medical practitioner must not certify capacity for the purposes certify capacity for the purposes of this act, unless a specialist clinical review and an independent psychiatric capacity assessment of
The campaign, as we hear from, provide us reassurance that it would obviously be something that they, and I quote, freely choose and have fought for, and there are noble Lords have said a Second Reading in this place that I quote, I want that choice for myself. It centres those who have no doubts of their capacity to make this decision, and no doubt that they would freely choose. But it removes from the room people that are not like us, and it's 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.
Because in particular of the inadequacies of the Mental Capacity Act, it is really clear that there remains significant concern about the relationship between the existing test in the Mental Capacity Act, which was brought forward in 2005, and the decision to have an assisted death under this bill. And at the risk of stating the obvious, it was a decision to have an assisted death was not in contemplation for the architects of that act back in 2005. So it's not surprising that we have heard such a range of questions and concerns, both from noble Lords and from experts outside this House, including the Royal College of Psychiatrists.
I listened closely to the remarks made by my noble and learned friends to Baroness Finlay, and it may be helpful for laws to be aware that back in the other place, the desire to use the Mental Capacity Act was largely pragmatic. It's what doctors are used to, not that it's the best framework for this decision. And I reflect on the comments from the health Minister, Stephen Kinnock, who said in the Commons it was it's a known quantity. It's a well-established piece of legislation doing things differently would cause, and I quote, operational challenges and confusion and that a different approach would add complexity.
So what we have here in this bunch of amendments are pragmatic, specific proposals of adjustments to address what we're trying to do within the constraints of the legislation. And perhaps this would have all been ironed out if we'd gone through some proper pre-legislative scrutiny, as we would have done had this been a government bill. I in particular acknowledge the expertise of Baroness Hollins, Baroness Cass and Baroness Finlay in this debate, and the debate has raised some very 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, whether that's sufficient, a duty to support decision making, which risks becoming a duty to facilitate a decision to die, and also relying on time specific capacity.
I have in front of me so many different important points that have been raised by noble Lords from across the House and in the time we have available, I'm not going to mention all of them. So I hope that noble Lords will forgive me for that, but I think it is worth reflecting on. On just a handful, it was Baroness Butler-Sloss who raised the very important concerns about people with variable dementia and people who are sectioned. It was the Bishop of Newcastle who highlighted the particular biases experienced by people with learning disabilities and the discrimination they face.
It was Baroness Finlay who talked about the need for clarity for doctors and and how we can at least endeavour to try and make the Mental Capacity Act fit for purpose in this bill. And Baroness Cass, who again reminded us all that assisted death is not a medical treatment. Again, I would just reflect because I think it's really important on the representations from Baroness Baroness Grey-Thompson, who again reflected on the concerns raised by the disabled community and the particular challenges that aren't addressed in this bill.
Given that my noble and learned friend, Lord Falconer has indicated in his response that he will defend the Mental Capacity Act as the foundation for this bill, I think it is disappointing that he has dismissed the specific provisions that could be set aside and could make a difference. I welcome the intervention that my noble and learned friend made in an earlier intervention that he would bring forward amendments which would introduce additional assessment in particular cases. But that question is obviously different to that question that's been asked today, which is about how we can be confident that the test itself is the right one.
I was particularly concerned by the response from my noble and learned friend to the question from Baroness Grey-Thompson about whether a disabled person would be safe, he said that no one would be over pressed into making a decision to end their life. I think for many of us here, it's not about being over pressed. We don't want anyone to feel pressed at all. I hope 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 in this place about these issues before Christmas, and in order to expedite our deliberations, I hope that we're not going to have to wait until the Report stage and that the amendments that 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 even quicker to ensure that on the basis that, as my noble and noble and learned friend has outlined, he's not prepared to accept any of the amendments proposed today in this group.
But we can see what he's going to propose as an alternative. And again, in light of the later groups that we have, again, I know that everyone is concerned that we should expedite our deliberations, and that would help us all enormously. And with that, I beg to leave to withdraw amendments 107, 108, 109.
**** Possible New Speaker ****
Before what I said over pressed, I did not mean over pressed. I meant pressed, and I apologise for
**** Possible New Speaker ****
saying over pressed. Is it your Lordships. Pleasure that this amendment be withdrawn? Amendment is by leave withdrawn? Amendment is by leave withdrawn. Amendment 108 not moved. withdrawn. Amendment 108 not moved. Amendment 109 110 not moved. We now come to the group of amendments come to the group of amendments beginning with amendment 110 A in clause three one, amendment 110 A Lord Blencathra.
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My Lord, I rise to speak to my amendment 110 A, which inserts in amendment 110 A, which inserts in clause three a requirement that where a person is ordinarily resident in a registered care home resident in a registered care home or nursing home, a registered medical practitioner must not certify capacity for the purposes certify capacity for the purposes of this act, unless a specialist clinical review and an independent psychiatric capacity assessment of
16:26
Lord Blencathra (Conservative)
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Lord Blencathra (Conservative)
psychiatric capacity assessment of being completed and their findings considered and any delay recorded. Let me begin with what I think I hope is a simple, uncontroversial proposition. Care home residents are a medically vulnerable group and deserve the highest standard of protection. When the law contemplates irreversible outcomes, many residents experience delirium, acute infection, dehydration, polypharmacy and other reversible conditions that cause fluctuating capacity. A single point in time assessment, however carefully performed, can miss those transient but decisive impairments.
My amendment recognises that clinical reality, 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 this bill. First, a specialist clinical review by a physician with expertise in geriatric medicine or complex care. Second, an independent psychiatric capacity assessment by a consultant psychiatrist with experience 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.
And third, 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 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. My Lords, I suggest these are modest, sensible requirements. They do not prevent assessments. They ensure they are done properly.
They create a short statutory time frame so that the process is not indefinitely protracted, and they create an audit trail for delays occur. They 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. My Lords, we all know that care homes are already operating under chronic strain, failing bed capacity, severe work, workforce shortages and the legacy of Covid pressures.
And those realities must shape and debate 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 last 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.
My Lords, we all remember Covid 19 and that exposed and amplified these pressures. The discharge to access policy and rapid hospital discharges into care homes in 2020 were possibly unnecessary emergency response, but reviews have concluded that some discharges contributed to outbreaks and that operational and clinical oversight was available. That episode shows how system pressure can degrade safeguards and lead to mistakes, not because clinicians lack compassion or uncaring that because the system was overwhelmed. If we accept that as a reality and it was, we must ask whether a new assisted dying pathway could create similar perverse pressures.
My Lords, we all remember what happened with the Liverpool Death Pathway, the doctors who were assigning people onto that pathway were not Harold Shipman characters. They weren't malicious, but they genuinely believe that since these people were going to die, therefore, putting them on this pathway was the sensible thing to do. It expedited matters and it created a climate whereby that was the right thing to do. I simply concern that in care homes, a similar climate might be created when someone has a terminal illness.
So there are three practical steps. Practical risks. I urge the House to confirm first, capacity assessments in care homes are fragile. As I mentioned, delirium medication effects and acute infections are common and often undetected without specialist geriatric and psychiatric expertise, point assessments can be misleading and irreversible decisions may follow from it. Second, bed shortages and bed blocking pressures create incentives. Policy focus on delayed transfers of care has driven a culture whereby freeing hospital beds is a priority. We all understand that, but that dynamic can translate into pressure to move people through pathways quickly and assisted dying service that promises speed could, in practice, become the option of least resistance for overstretched systems.
And third, workforce shortages mean specialist input is not guaranteed. The bill assumes timely access to consultants, psychiatrists and palliative teams. The reality is uneven and availability across regions and specialist capacity is thin. The risk of error rises and the moral burden on frontline clinicians increases. I understand we all understand the humane impulse behind assisted dying and it is understandable, but we must not legislate in a way that substitutes legal convenience for investment and care. My Lords, my amendment does not obstruct compassion.
It strengthens the bill, safeguards where they are most needed. It requires multidisciplinary review, explicit consideration and treatment of reversible causes, a short statutory time frame and an audit trail for delays. Those protections reduce the risk that system pressures, workforce shortages or administrative convenience will shape life ending decisions. My Lords, I conclude by saying that when the law contemplates an irreversible outcome, the threshold for certainty must be higher for those whose capacity is most likely to fluctuate. Care home residents deserve no less.
I therefore commend my amendment to the House, and I urge noble Lords to support it. And finally, Minister, can we please, when you reply, not have the same bogus excuse we have heard in almost every other single group that the proposed amendments are probably contrary to the OECD. The government keeps pulling that poor rabbit out of the hat and its ears are getting a bit battered by now.
**** Possible New Speaker ****
I beg to move. Proposed clause three, page two, line 21. Insert the words as
**** Possible New Speaker ****
printed on the marshal. Best. My Lords. I was not able to be here this morning, as noble Lords will know morning, as noble Lords will know many of them, that I spend much of the mornings, most days, in a care the mornings, most days, in a care home. And in fact 2 or 3 times a
My amendment recognises that clinical reality, 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 this bill. First, a specialist clinical review by a physician with expertise in geriatric medicine or complex care. Second, an independent psychiatric capacity assessment by a consultant psychiatrist with experience 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.
And third, 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 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. My Lords, I suggest these are modest, sensible requirements. They do not prevent assessments. They ensure they are done properly.
They create a short statutory time frame so that the process is not indefinitely protracted, and they create an audit trail for delays occur. They 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. My Lords, we all know that care homes are already operating under chronic strain, failing bed capacity, severe work, workforce shortages and the legacy of Covid pressures.
And those realities must shape and debate 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 last 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.
My Lords, we all remember Covid 19 and that exposed and amplified these pressures. The discharge to access policy and rapid hospital discharges into care homes in 2020 were possibly unnecessary emergency response, but reviews have concluded that some discharges contributed to outbreaks and that operational and clinical oversight was available. That episode shows how system pressure can degrade safeguards and lead to mistakes, not because clinicians lack compassion or uncaring that because the system was overwhelmed. If we accept that as a reality and it was, we must ask whether a new assisted dying pathway could create similar perverse pressures.
My Lords, we all remember what happened with the Liverpool Death Pathway, the doctors who were assigning people onto that pathway were not Harold Shipman characters. They weren't malicious, but they genuinely believe that since these people were going to die, therefore, putting them on this pathway was the sensible thing to do. It expedited matters and it created a climate whereby that was the right thing to do. I simply concern that in care homes, a similar climate might be created when someone has a terminal illness.
So there are three practical steps. Practical risks. I urge the House to confirm first, capacity assessments in care homes are fragile. As I mentioned, delirium medication effects and acute infections are common and often undetected without specialist geriatric and psychiatric expertise, point assessments can be misleading and irreversible decisions may follow from it. Second, bed shortages and bed blocking pressures create incentives. Policy focus on delayed transfers of care has driven a culture whereby freeing hospital beds is a priority. We all understand that, but that dynamic can translate into pressure to move people through pathways quickly and assisted dying service that promises speed could, in practice, become the option of least resistance for overstretched systems.
And third, workforce shortages mean specialist input is not guaranteed. The bill assumes timely access to consultants, psychiatrists and palliative teams. The reality is uneven and availability across regions and specialist capacity is thin. The risk of error rises and the moral burden on frontline clinicians increases. I understand we all understand the humane impulse behind assisted dying and it is understandable, but we must not legislate in a way that substitutes legal convenience for investment and care. My Lords, my amendment does not obstruct compassion.
It strengthens the bill, safeguards where they are most needed. It requires multidisciplinary review, explicit consideration and treatment of reversible causes, a short statutory time frame and an audit trail for delays. Those protections reduce the risk that system pressures, workforce shortages or administrative convenience will shape life ending decisions. My Lords, I conclude by saying that when the law contemplates an irreversible outcome, the threshold for certainty must be higher for those whose capacity is most likely to fluctuate. Care home residents deserve no less.
I therefore commend my amendment to the House, and I urge noble Lords to support it. And finally, Minister, can we please, when you reply, not have the same bogus excuse we have heard in almost every other single group that the proposed amendments are probably contrary to the OECD. The government keeps pulling that poor rabbit out of the hat and its ears are getting a bit battered by now.
**** Possible New Speaker ****
I beg to move. Proposed clause three, page two, line 21. Insert the words as
**** Possible New Speaker ****
printed on the marshal. Best. My Lords. I was not able to be here this morning, as noble Lords will know morning, as noble Lords will know many of them, that I spend much of the mornings, most days, in a care the mornings, most days, in a care home. And in fact 2 or 3 times a
16:33
Baroness Hayter of Kentish Town (Labour)
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Baroness Hayter of Kentish Town (Labour)
day. Very often 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, in which case I'll simply say that bridge House Lodge is one of the most amazing places for looking after people. But I have to say to the noble Lord who has moved this, I don't know if he spends as much time in care homes as I do, but there they do everything possible to keep their residents alive, to keep them well, to keep them well fed, replenished, to keep them amused, and to give them a quality of life that I think, you know, would be appreciated by everyone.
But of course, a lot of people in care homes are very ill. They some of them will be exactly the sort of people who may well need this. But I think it is a bit, if I may say so. Condensating to think that they are all vulnerable. Most people in the care home don't know what I do. They think I'm a doctor sometimes because I'm known as doctor hater, because I've got a PhD. I'm 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? Now, this was a medical, a very senior medical physicist, a professor of of physics at UCL, and I will give a shout out to his name to Andrew Todd.
Now, these are people in care homes with capacity who know exactly what they're doing and who 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, not now. And and the idea that they somehow are incompetent or the doctors looking after them, who are some of the most specialists in geriatric care, should somehow need an extra set of safeguards, rather than those being the actual specialists who best looked after them.
I just think is not living in in in the real world. These are because so many people at the end of their lives will be either in care homes or hospitals or hospices. The idea that we would sort of almost exclude them from having the normal way of this bill seems to me extraordinary. So I hope that the noble Lord and others will think very carefully before they are saying that exactly a cohort who are already ill should somehow be excluded from the normal train of this bill would really be inappropriate.
And I do urge the noble Lord at the end to withdraw this amendment and think very, very carefully before he pushes it again in.
But of course, a lot of people in care homes are very ill. They some of them will be exactly the sort of people who may well need this. But I think it is a bit, if I may say so. Condensating to think that they are all vulnerable. Most people in the care home don't know what I do. They think I'm a doctor sometimes because I'm known as doctor hater, because I've got a PhD. I'm 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? Now, this was a medical, a very senior medical physicist, a professor of of physics at UCL, and I will give a shout out to his name to Andrew Todd.
Now, these are people in care homes with capacity who know exactly what they're doing and who 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, not now. And and the idea that they somehow are incompetent or the doctors looking after them, who are some of the most specialists in geriatric care, should somehow need an extra set of safeguards, rather than those being the actual specialists who best looked after them.
I just think is not living in in in the real world. These are because so many people at the end of their lives will be either in care homes or hospitals or hospices. The idea that we would sort of almost exclude them from having the normal way of this bill seems to me extraordinary. So I hope that the noble Lord and others will think very carefully before they are saying that exactly a cohort who are already ill should somehow be excluded from the normal train of this bill would really be inappropriate.
And I do urge the noble Lord at the end to withdraw this amendment and think very, very carefully before he pushes it again in.
16:36
Lord Deben (Conservative)
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Lord Deben (Conservative)
Sympathy with the noble Lady. >> Sympathy with the noble Lady. But and she is very fortunate, as is her husband, with the care home in which she is. For many years I represented the constituency, which had perhaps the largest number of had perhaps the largest number of care homes in the country. Suffolk Coastal is an elegant area and with the towns such as Southwold and Aldeburgh and Felixstowe, it is a natural place for that to be and I would of course visit them on a regular basis, as indeed did my wife.
I have to say to the noble Lady that the difference between the best and the worst is very, very considerable indeed, and in kind of 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 to the very considerable difference. And the reason why I think Lord Blencathra amendment is so important is because it precisely doesn't exclude people.
What it says is that the conditions of care homes are such that it is important to protect people rather differently. Because of our experience. Now, some of the care homes in my former constituency are absolutely wonderful with really good care by really good clinicians. I cannot say that that is universal, and therefore I do think that some protection, and this seems to me to be a very sensible bit, doesn't exclude anything. Anybody. And the noble Lady suggested in a sense that this was to exclude them.
This is in fact, a proposal that protects those who are less happily off than the noble Lady and her husband. I think it's very generous of her to share her current concerns. Mine are not as current as that, but they are, I think, very much wider and over a much longer period. And the devastating effect of Covid, which came after my membership of the House of Commons, I looked at again too, because of corrections, which one had, and that's made me even stronger in my belief that we should be especially concerned with those in care homes, not because of the best, not because of the average, but because there are many where people would otherwise be
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vulnerable. And my Lord. My Lord. Sorry to.
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Sorry to. In the name of the noble Baroness Bi Baroness Eaton who cannot be with us today. I put my cannot be with us today. I put my name to those groups. My Lords, I'd like to say, although this is a very short group, it does address a very short group, it does address a very important matter. I would matter, I would want to endorse what the noble Lord Lord Deben has what the noble Lord Lord Deben has just said. I would extend my sympathy to the noble Lady Baroness Hayter, because I know what it is
I have to say to the noble Lady that the difference between the best and the worst is very, very considerable indeed, and in kind of 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 to the very considerable difference. And the reason why I think Lord Blencathra amendment is so important is because it precisely doesn't exclude people.
What it says is that the conditions of care homes are such that it is important to protect people rather differently. Because of our experience. Now, some of the care homes in my former constituency are absolutely wonderful with really good care by really good clinicians. I cannot say that that is universal, and therefore I do think that some protection, and this seems to me to be a very sensible bit, doesn't exclude anything. Anybody. And the noble Lady suggested in a sense that this was to exclude them.
This is in fact, a proposal that protects those who are less happily off than the noble Lady and her husband. I think it's very generous of her to share her current concerns. Mine are not as current as that, but they are, I think, very much wider and over a much longer period. And the devastating effect of Covid, which came after my membership of the House of Commons, I looked at again too, because of corrections, which one had, and that's made me even stronger in my belief that we should be especially concerned with those in care homes, not because of the best, not because of the average, but because there are many where people would otherwise be
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vulnerable. And my Lord. My Lord. Sorry to.
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Sorry to. In the name of the noble Baroness Bi Baroness Eaton who cannot be with us today. I put my cannot be with us today. I put my name to those groups. My Lords, I'd like to say, although this is a very short group, it does address a very short group, it does address a very important matter. I would matter, I would want to endorse what the noble Lord Lord Deben has what the noble Lord Lord Deben has just said. I would extend my sympathy to the noble Lady Baroness Hayter, because I know what it is
16:40
Baroness O'Loan (Crossbench)
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Baroness O'Loan (Crossbench)
like to have someone in a care home. Well, in my case, it was someone Well, in my case, it was someone with dementia for years in a very deteriorating situation and that is profoundly difficult. But but there profoundly difficult. But but there are huge variations in the standards in these homes. And it's because of that and because of this because of that and because of this is really trying to introduce an additional safeguard, the situation additional safeguard, the situation where all is not as well as it might be, for example, in care homes during Covid, people were put under.
As a matter of process by the care homes. And it shouldn't have happened, but it did happen and that was the result. And if you're in a care home and you fall down the stairs or something, and you may have a broken hip and all sorts of consequential problems, ambulances are certainly in the part of the country in which my mother was do not attend the care homes for at least four hours. They are not priorities. So so there are difficulties with care homes.
So really it's about care homes and nursing homes. And it's important to say that. And the residents of care homes and nursing homes very often have very few visitors. Some of them have family who do come to them. But many, many of them don't. And they can actually, another experience I had was they latch on to you and they want you to be visiting them too, because they're lonely. They have little or no contact contact outside the home itself, and they can actually become very isolated and alone.
Although they're 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 therefore requires a heightened evidential standard, demonstrable through a specialist clinical assessment for residents of registered care or nursing homes and 1 in 3 people with dementia in the UK are never diagnosed. Alzheimer's Research UK told US that dementia diagnosis rate in England was 66.3% in December 25th, and the dementia incidence is over 20% higher among black adults compared to the UK average.
The noble Lord, Lord Falconer, has agreed that it is necessary to make provision for those who have been made subject to an dolls dolls, and he said last week he was preparing the amendments both for those who are between 18 and 25 and for those subject to dolls. And he's considering what additional assessment could apply. And we have talked about that a little. My Lords Age UK confirmed 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 and care. Based on more than 1000 calls from care workers and family members, found that the predominant concern raised by both groups is the issue of capacity, with 97% of helpline callers raising the issue of fluctuating, 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%, called lack of fluids is a very common problem because people with cognitive impairment or a form of dementia may not receive sufficient hydration, and 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, and then she would just ignore it. She wouldn't drink it unless we coaxed her repeatedly to do so, and that is not an uncommon experience. And it's also the case that the elderly are very susceptible to UTIs, which require antibiotic treatment. And 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.
So, as I have said, a significant proportion of people living with dementia or cognitive impairments aren't diagnosed until the later stages of the disease. Standard mental health capacities 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 amongst care home residents presents a margin of error that I would respectfully suggest to you all Lordships. No legislature can reasonably and responsibly ignore to address the problems identified.
These amendments 111 requires a higher evidential standard and 112 provides for residents of registered care and nursing homes, and says that capacity can only be established following one specialist clinical assessment ruling out reversible causes of fluctuating or impaired capacity, and two a capacity determination conducted by a consultant psychiatrist with relevant experience. It further clarifies that an assessment alone is insufficient, given the heightened medical and institutional vulnerability to unstable capacity in care home settings. My Lords, if 1 in 3 people with dementia.
With dementia are never diagnosed, then 1 in 3 potential applicants among this bill may have a recognised impairment incapacity. That is not a measure of error that we can ignore. We are where we are and the risks that people, especially those with undiagnosed dementia and consequential lack of capacity, those people may present to die and they may be persuaded to seek or agree with the doctor that assisted suicide would be the only option they have left. I accept, as the noble and learned Lord said to me earlier that two doctors are required to examine the patient, but there is no requirement for face to face, lengthy discussions.
And that is the thing that we discussed last week or the week before, and the problems arising from the fact that the act does not require face to face consultations are particularly relevant to those isolated in care and nursing homes. The Royal College of Psychiatrists, in evidence to this committee, to the Committee of this House, confirmed that the Mental Capacity Act was never designed for irreversible decisions, and that only senior psychiatric assessment can safely determine capacity in such circumstances.
And in a recent briefing to peers, the Royal College of Psychiatrists added assessors should be required to take all practicable steps to work with professionals involved in a person's health and social care, and to talk to a relative, carer or nominated friend, including by accessing medical notes from both primary and secondary care. Does the noble and learned Lord Hall Faulkner agree that only senior psychiatric assessment, as asserted by the Royal College of Psychiatrists, can safely determine capacity in such circumstances, and that the process of determining capacity should involve a multi-agency approach and the involvement of a member of family or friends, and that, therefore the safeguards provided in these amendments should be accepted.
These may be the kind of things that the noble Lord is proposing to bring to the House in the amendments that he places before the House, there is another gap in the safeguards, which was identified by the Care Quality Commission, which reported that a respondent from the National Dols Leeds network noted that while people those living with dementia usually meet the requirements for dols, they often don't meet the priority prioritisation criteria and may be overlooked. They also raise concerns about some assessments taking place virtually, which may not be suitable now, given that volume of evidence of the risks to those in residential and nursing care.
And I talked earlier about the number of people who quite simply don't remember having agreed that they wanted assisted dying or that they want or not assisted dying, but they wanted to take a particular decision. Across studies, 68 to 89% of serious decisions made on a bad day are entirely forgotten or disowned once the person recovers. So given that volume of evidence, can I ask the noble and learned Lord? In the light of the urgent call for face to face consultations in your Lordships Chamber, I think last week, whether he agrees that it would be vital that any assessments in care homes and nursing homes should be face to face and should never take place virtually.
My Lords, it's now nearly 10 to 5. I will have to leave very shortly to go and get my plane, because there is another plane which I can catch. Obviously I would want to stay to hear the noble Baroness. The Minister's response to the observations which I made, and indeed to hear any other contributions of any other noble peers. So I apologise to the House that I can't do so. And I would say again, that it's inappropriate that so many of our colleagues have had
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to leave for similar reasons. My Lords. Can I raise a practical problem which I would practical problem which I would urge the noble and learned Lord to address in connection with care homes and nursing homes? And the homes and nursing homes? And the problem has been drawn to my attention, and I think the attention of other noble Lords by a letter received today from a charity called Mission Care. charity called Mission Care. Mission care has 300 staff in and around London and looks after 230
As a matter of process by the care homes. And it shouldn't have happened, but it did happen and that was the result. And if you're in a care home and you fall down the stairs or something, and you may have a broken hip and all sorts of consequential problems, ambulances are certainly in the part of the country in which my mother was do not attend the care homes for at least four hours. They are not priorities. So so there are difficulties with care homes.
So really it's about care homes and nursing homes. And it's important to say that. And the residents of care homes and nursing homes very often have very few visitors. Some of them have family who do come to them. But many, many of them don't. And they can actually, another experience I had was they latch on to you and they want you to be visiting them too, because they're lonely. They have little or no contact contact outside the home itself, and they can actually become very isolated and alone.
Although they're 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 therefore requires a heightened evidential standard, demonstrable through a specialist clinical assessment for residents of registered care or nursing homes and 1 in 3 people with dementia in the UK are never diagnosed. Alzheimer's Research UK told US that dementia diagnosis rate in England was 66.3% in December 25th, and the dementia incidence is over 20% higher among black adults compared to the UK average.
The noble Lord, Lord Falconer, has agreed that it is necessary to make provision for those who have been made subject to an dolls dolls, and he said last week he was preparing the amendments both for those who are between 18 and 25 and for those subject to dolls. And he's considering what additional assessment could apply. And we have talked about that a little. My Lords Age UK confirmed 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 and care. Based on more than 1000 calls from care workers and family members, found that the predominant concern raised by both groups is the issue of capacity, with 97% of helpline callers raising the issue of fluctuating, 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%, called lack of fluids is a very common problem because people with cognitive impairment or a form of dementia may not receive sufficient hydration, and 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, and then she would just ignore it. She wouldn't drink it unless we coaxed her repeatedly to do so, and that is not an uncommon experience. And it's also the case that the elderly are very susceptible to UTIs, which require antibiotic treatment. And 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.
So, as I have said, a significant proportion of people living with dementia or cognitive impairments aren't diagnosed until the later stages of the disease. Standard mental health capacities 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 amongst care home residents presents a margin of error that I would respectfully suggest to you all Lordships. No legislature can reasonably and responsibly ignore to address the problems identified.
These amendments 111 requires a higher evidential standard and 112 provides for residents of registered care and nursing homes, and says that capacity can only be established following one specialist clinical assessment ruling out reversible causes of fluctuating or impaired capacity, and two a capacity determination conducted by a consultant psychiatrist with relevant experience. It further clarifies that an assessment alone is insufficient, given the heightened medical and institutional vulnerability to unstable capacity in care home settings. My Lords, if 1 in 3 people with dementia.
With dementia are never diagnosed, then 1 in 3 potential applicants among this bill may have a recognised impairment incapacity. That is not a measure of error that we can ignore. We are where we are and the risks that people, especially those with undiagnosed dementia and consequential lack of capacity, those people may present to die and they may be persuaded to seek or agree with the doctor that assisted suicide would be the only option they have left. I accept, as the noble and learned Lord said to me earlier that two doctors are required to examine the patient, but there is no requirement for face to face, lengthy discussions.
And that is the thing that we discussed last week or the week before, and the problems arising from the fact that the act does not require face to face consultations are particularly relevant to those isolated in care and nursing homes. The Royal College of Psychiatrists, in evidence to this committee, to the Committee of this House, confirmed that the Mental Capacity Act was never designed for irreversible decisions, and that only senior psychiatric assessment can safely determine capacity in such circumstances.
And in a recent briefing to peers, the Royal College of Psychiatrists added assessors should be required to take all practicable steps to work with professionals involved in a person's health and social care, and to talk to a relative, carer or nominated friend, including by accessing medical notes from both primary and secondary care. Does the noble and learned Lord Hall Faulkner agree that only senior psychiatric assessment, as asserted by the Royal College of Psychiatrists, can safely determine capacity in such circumstances, and that the process of determining capacity should involve a multi-agency approach and the involvement of a member of family or friends, and that, therefore the safeguards provided in these amendments should be accepted.
These may be the kind of things that the noble Lord is proposing to bring to the House in the amendments that he places before the House, there is another gap in the safeguards, which was identified by the Care Quality Commission, which reported that a respondent from the National Dols Leeds network noted that while people those living with dementia usually meet the requirements for dols, they often don't meet the priority prioritisation criteria and may be overlooked. They also raise concerns about some assessments taking place virtually, which may not be suitable now, given that volume of evidence of the risks to those in residential and nursing care.
And I talked earlier about the number of people who quite simply don't remember having agreed that they wanted assisted dying or that they want or not assisted dying, but they wanted to take a particular decision. Across studies, 68 to 89% of serious decisions made on a bad day are entirely forgotten or disowned once the person recovers. So given that volume of evidence, can I ask the noble and learned Lord? In the light of the urgent call for face to face consultations in your Lordships Chamber, I think last week, whether he agrees that it would be vital that any assessments in care homes and nursing homes should be face to face and should never take place virtually.
My Lords, it's now nearly 10 to 5. I will have to leave very shortly to go and get my plane, because there is another plane which I can catch. Obviously I would want to stay to hear the noble Baroness. The Minister's response to the observations which I made, and indeed to hear any other contributions of any other noble peers. So I apologise to the House that I can't do so. And I would say again, that it's inappropriate that so many of our colleagues have had
**** Possible New Speaker ****
to leave for similar reasons. My Lords. Can I raise a practical problem which I would practical problem which I would urge the noble and learned Lord to address in connection with care homes and nursing homes? And the homes and nursing homes? And the problem has been drawn to my attention, and I think the attention of other noble Lords by a letter received today from a charity called Mission Care. charity called Mission Care. Mission care has 300 staff in and around London and looks after 230
16:49
Lord Carlile of Berriew (Crossbench)
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Lord Carlile of Berriew (Crossbench)
residents, some of whom might wish residents, some of whom might wish to apply for assisted death. The point that Mission Care makes is that their staff, by reason of the fact that Mission Care is a fact that Mission Care is a committed Christian organisation, En bloc would not be willing to En bloc would not be willing to take part in assisted death under this bill, and the effect of that, say, mission care would be for mission care to have to close, thereby depriving people of quality care which they are having in those institutions.
Now, I, I know that the noble Lord Lord Blencathra has a visceral opposition to anything arising from the European Convention on Human Rights. However, I've known the noble Lord long enough and have enough affection for him to know that he's very practical. And if the European Convention on Human Rights is going to assist his argument, then he will be very ready to adopt it. So I'd ask him to be patient with me. These amendments, well, particularly amendments 110 and 112, which I support, take the process out of nursing homes and residential homes and into the hands of outsiders.
It's not just a question of mission care. Among all the many residential and nursing homes up and down the country, there are going to be very large numbers of staff who will wish to take advantage of clause 31. One of this bill, which says that no person is under any duty to participate in the provision of provision of assistance in accordance with this act. It's the opt out and it's a very important opt out, which I know that the noble and learned Lord is committed to as part of his bill.
So if we found that in nursing homes and residential homes up and around the country, a significant proportion of staff wished to take advantage of clause 31 one, section 31 one of the act. If it becomes an act, it is going to cause real difficulties for residential and nursing homes because there will be division among their staff. And it may be that those divisions will make it very difficult for them to play any part whatsoever in this scheme if it is made law.
So I would 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.
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Sorry, I didn't see. I didn't see the noble Lady. Thank you very much for giving. Giving way. I just wanted to
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Giving way. I just wanted to draw attention to the fact I raised this issue. I think two, two days this issue. I think two, two days previously in committee, that it is essential that we retain, essential that we retain, particularly nursing staff who would object to anything to do with would object to anything to do with assisted dying. I think that can be achieved, as I've said earlier, by enabling people when they do their advance directives to be very clear, if they never, ever want to have this discussed with them, which I think is completely fair, and that nursing homes must also be able to be very clear that they want nothing to do with this in their, you know, marketing materials.
That's a bit of a tough word, but I think it's real because 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 that are in long term care homes rather than nursing homes have got cognitive disability, which means they won't be eligible in this event. It is the very high tech nursing homes where people have very complicated issues who might want to choose assisted dying, and that might be a 52 year old with complex disease.
But don't let I can see. Want me to hurry up? But I just want to be absolutely clear that we need to
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get that in context. Thank you. Very grateful to the to my noble friend for that intervention. She's friend for that intervention. She's raised three points and I want to answer all three points very quickly. One is for number one is I quickly. One is for number one is I absolutely agree with her that we have to respect the views of staff, particularly views that are a combination of professional and philosophical principle. And I philosophical principle. And I think that taking this process out of the nursing home, in accordance with amendments 110 and 112, does exactly that.
Secondly, advanced directives. That's quite an esoteric issue. I absolutely 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. And we came out with very different impressions of those homes the good, the indifferent, and in 1 or 2 cases, the really bad. And we have to take that into account.
And in those homes there is practically nobody with an advanced directive, advanced directives on the whole, are a middle class thing. Probably most of us here have advanced directives of some kind or another. Which one has to pay one's solicitor to produce a lot of money in London? Happily, rather less out in the provinces. But they are where there are advanced directives. Fine. But not everybody has advanced directive. And I made the third point, which related to the noble Lord Lord Deben speech.
So I repeat, I think what I'm making is an extremely practical point that ought to be addressed, that if this responsibility lies with nursing homes, then it's going to cause immense difficulty. And 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.
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If I may just provide some information to the House, which I think supports these amendments think supports these amendments quite well, and that is that Care England, who have 122 care England, who have 122 care providers, consulted some weeks ago providers, consulted some weeks ago now their care providers and 84% said they hadn't been consulted on said they hadn't been consulted on the bill or its implications. 24% said staffing would become very difficult due to conscientious objections, and a further 16%
Now, I, I know that the noble Lord Lord Blencathra has a visceral opposition to anything arising from the European Convention on Human Rights. However, I've known the noble Lord long enough and have enough affection for him to know that he's very practical. And if the European Convention on Human Rights is going to assist his argument, then he will be very ready to adopt it. So I'd ask him to be patient with me. These amendments, well, particularly amendments 110 and 112, which I support, take the process out of nursing homes and residential homes and into the hands of outsiders.
It's not just a question of mission care. Among all the many residential and nursing homes up and down the country, there are going to be very large numbers of staff who will wish to take advantage of clause 31. One of this bill, which says that no person is under any duty to participate in the provision of provision of assistance in accordance with this act. It's the opt out and it's a very important opt out, which I know that the noble and learned Lord is committed to as part of his bill.
So if we found that in nursing homes and residential homes up and around the country, a significant proportion of staff wished to take advantage of clause 31 one, section 31 one of the act. If it becomes an act, it is going to cause real difficulties for residential and nursing homes because there will be division among their staff. And it may be that those divisions will make it very difficult for them to play any part whatsoever in this scheme if it is made law.
So I would 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.
**** Possible New Speaker ****
Sorry, I didn't see. I didn't see the noble Lady. Thank you very much for giving. Giving way. I just wanted to
**** Possible New Speaker ****
Giving way. I just wanted to draw attention to the fact I raised this issue. I think two, two days this issue. I think two, two days previously in committee, that it is essential that we retain, essential that we retain, particularly nursing staff who would object to anything to do with would object to anything to do with assisted dying. I think that can be achieved, as I've said earlier, by enabling people when they do their advance directives to be very clear, if they never, ever want to have this discussed with them, which I think is completely fair, and that nursing homes must also be able to be very clear that they want nothing to do with this in their, you know, marketing materials.
That's a bit of a tough word, but I think it's real because 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 that are in long term care homes rather than nursing homes have got cognitive disability, which means they won't be eligible in this event. It is the very high tech nursing homes where people have very complicated issues who might want to choose assisted dying, and that might be a 52 year old with complex disease.
But don't let I can see. Want me to hurry up? But I just want to be absolutely clear that we need to
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get that in context. Thank you. Very grateful to the to my noble friend for that intervention. She's friend for that intervention. She's raised three points and I want to answer all three points very quickly. One is for number one is I quickly. One is for number one is I absolutely agree with her that we have to respect the views of staff, particularly views that are a combination of professional and philosophical principle. And I philosophical principle. And I think that taking this process out of the nursing home, in accordance with amendments 110 and 112, does exactly that.
Secondly, advanced directives. That's quite an esoteric issue. I absolutely 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. And we came out with very different impressions of those homes the good, the indifferent, and in 1 or 2 cases, the really bad. And we have to take that into account.
And in those homes there is practically nobody with an advanced directive, advanced directives on the whole, are a middle class thing. Probably most of us here have advanced directives of some kind or another. Which one has to pay one's solicitor to produce a lot of money in London? Happily, rather less out in the provinces. But they are where there are advanced directives. Fine. But not everybody has advanced directive. And I made the third point, which related to the noble Lord Lord Deben speech.
So I repeat, I think what I'm making is an extremely practical point that ought to be addressed, that if this responsibility lies with nursing homes, then it's going to cause immense difficulty. And 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.
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If I may just provide some information to the House, which I think supports these amendments think supports these amendments quite well, and that is that Care England, who have 122 care England, who have 122 care providers, consulted some weeks ago providers, consulted some weeks ago now their care providers and 84% said they hadn't been consulted on said they hadn't been consulted on the bill or its implications. 24% said staffing would become very difficult due to conscientious objections, and a further 16%
16:57
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
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, and assisted dying in their homes, and only 27% reported 24 seven access only 27% reported 24 seven access to specialist palliative care support on site. I think this demonstrates that the care home demonstrates that the care home sector itself has been very worried about how it would cope with this, and I think sadly, it also demonstrates just why not having specialist palliative care in scope on this bill has created quite so
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many problems. For my noble friend Baroness
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For my noble friend Baroness Eaton's 111 requiring a higher bar for proving capacity in care homes for proving capacity in care homes and nursing homes. Baroness O'Loan has already referred to the date of has already referred to the date of the evidence of higher cognitive impairment of 70% in care homes, impairment of 70% in care homes, the failure of MCA assessments and 15 to 25%, and the incidence of
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many problems. For my noble friend Baroness
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For my noble friend Baroness Eaton's 111 requiring a higher bar for proving capacity in care homes for proving capacity in care homes and nursing homes. Baroness O'Loan has already referred to the date of has already referred to the date of the evidence of higher cognitive impairment of 70% in care homes, impairment of 70% in care homes, the failure of MCA assessments and 15 to 25%, and the incidence of
16:58
Baroness Lawlor (Conservative)
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Baroness Lawlor (Conservative)
dementia. And I won't recount the other data. I've cut it out. Also, the very mixed picture we get of care homes and nursing homes. I care homes and nursing homes. I just one example was recently. Well, not that recently, but it was an not that recently, but it was an undercover BBC programme which which for learning disabilities and which for learning disabilities and autism at Walton Hall in County Durham. And the evidence was shocking and it was described by specialists in the subject as amounting to psychological torture.
So apart from these problems that we have in care homes for establishing giving patients the ability to use capacity because of all the counterfactuals that exist and the impossibility of establishing accurately capacity, I would just close to reflect on the potential harm resulting from another factor, a danger we should bear in mind that from the state, for an official bureaucratic officials bureaucratise a system in a way that endangers the frail and the elderly. And under this bill particularly endangers care home residents, and some of whom have been misdiagnosed as having capacity when they don't have it.
And they go on a path to suicide. And we've already had mention of the Liverpool Liverpool Care Park in this connection, but I'd like to refer to again to Covid 19 of those living in care homes who depended on NHS treatment and GP care, as well as their care home teams, many of whom did go out of their way beyond the course of duty with their managers, working long hours and helping their patients. But their lives were made all the more precarious by the official approach, as the block booking of beds at care homes, facilitating the discharge of patients into care homes, many of whom were Covid positive.
Moreover, and this is something I saw myself NHS guidance to GPS at the time. But since and this we're talking about early 2020 but since removed from the website was not to visit care homes. Bureaucracies have their own momentum. If we establish a state service, it may end up by killing
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far more than we or they would like. Well. My Lords. Like the noble Lady Baroness
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Like the noble Lady Baroness Hayter, I have recent experience of visiting care homes. My late father was in a car home from November was in a car home from November 2024 until December 2025. Unlike the noble Lady Baroness Hayter, although he was very 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 I think might be relevant for noble Lords to reflect upon, not least because they also provide a lesson for those that Baroness Hayter has talked about who are in nursing homes but are still with capacity and able to form a view, and would be able to say, I still want an assisted death.
And the
So apart from these problems that we have in care homes for establishing giving patients the ability to use capacity because of all the counterfactuals that exist and the impossibility of establishing accurately capacity, I would just close to reflect on the potential harm resulting from another factor, a danger we should bear in mind that from the state, for an official bureaucratic officials bureaucratise a system in a way that endangers the frail and the elderly. And under this bill particularly endangers care home residents, and some of whom have been misdiagnosed as having capacity when they don't have it.
And they go on a path to suicide. And we've already had mention of the Liverpool Liverpool Care Park in this connection, but I'd like to refer to again to Covid 19 of those living in care homes who depended on NHS treatment and GP care, as well as their care home teams, many of whom did go out of their way beyond the course of duty with their managers, working long hours and helping their patients. But their lives were made all the more precarious by the official approach, as the block booking of beds at care homes, facilitating the discharge of patients into care homes, many of whom were Covid positive.
Moreover, and this is something I saw myself NHS guidance to GPS at the time. But since and this we're talking about early 2020 but since removed from the website was not to visit care homes. Bureaucracies have their own momentum. If we establish a state service, it may end up by killing
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far more than we or they would like. Well. My Lords. Like the noble Lady Baroness
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Like the noble Lady Baroness Hayter, I have recent experience of visiting care homes. My late father was in a car home from November was in a car home from November 2024 until December 2025. Unlike the noble Lady Baroness Hayter, although he was very 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 I think might be relevant for noble Lords to reflect upon, not least because they also provide a lesson for those that Baroness Hayter has talked about who are in nursing homes but are still with capacity and able to form a view, and would be able to say, I still want an assisted death.
And the
17:02
Baroness Smith of Newnham (Liberal Democrat)
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Baroness Smith of Newnham (Liberal Democrat)
reason I say that is precisely because of issues of fluctuating capacity, issues of infection, delirium and also medication, because before my father went into because before my father went into a nursing home, there was a period when I assumed he had dementia. He when I assumed he had dementia. He was becoming more and more vague. was becoming more and more vague. He was on a new medication, and the more the over time. The doctors had said double the medication, quadruple the medication, and he became more and more vague and didn't seem to know who I was.
Then, for whatever reason, the medication was changed and this was nothing to do with dementia or mental capacity. This was to do with blood pressure, and the medicine was taken away. Something else was put in its place and my father returned. It was like some sort of it happened to be around Easter. It was like some Easter resurrection, because he was then able to be normally functioning as he had been before. He then got pneumonia, went into hospital and was let out into a care home and in the car home, they said were slightly worried about cognitive decline, cognitive impairment and at a review meeting they went through the medications and I said, can you tell me everything is on? And they then listed the medicine again, Doxazosin.
And I said, well, why is he on that? That caused problems before? And they went, oh, we don't know really. The hospital put him on it. And there'd been nothing in his medical notes to say, don't, don't use this medication. So the new GP, to whom he'd been referred, spoke to me on the phone and she 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, well, to be honest, there isn't 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. And so the view was they wouldn't bother testing my father for capacity. Now, my father did subsequently have on his death certificate that he had vascular dementia. So maybe if full capacity tests had been done, that would have been diagnosed at a point before he died rather than after he died, because it was never fully diagnosed while he was alive.
There was merely a suggestion that there might be an issue. But the point is that if medication can actually affect somebody who would otherwise have capacity, that might affect the the resident that the noble Lady Baroness Hayter referred to in a nursing home, that person could equally get an infection or be prescribed something to for which the contraindications. But would there be sufficient recognition of that? And I think although some nursing homes will have brilliant care, not all of them will.
And my father was.
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Even more if your father or my husband was at home all day without husband was at home all day without any medical or nursing staff around them, these people are actually more likely to have those more likely to have those infections picked up then. Then people of the of the equivalent who
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people of the of the equivalent who are living at home. I. I can see a point to that. But
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I can see a point to that. But the the message that I was given by the mental health practitioner who I had come round me from the mental health team, I think he was a psychiatrist, basically said, once somebody is in a home, these tests become much more difficult because of the nature of the environment. And I think it may may differ from home to home. But and yes, when my father had pneumonia and was clearly delirious, then he was at home when that happened.
But if there are concerns, then surely we should actually be looking at making sure that people have if they have cognitive impairment, we know that's the case. But if somebody doesn't have cognitive impairment, if there are short term issues which are being discussed in the amendments, particularly 111 and 112, then in terms of those people who do want an assisted death, surely they would want it ruled out that they had some sort of cognitive impairment, if indeed it is something that is temporary and reversible.
And I think that's the sort of thing that we really need to get right, because it's not only for those people who don't who who do have an empowerment, but for those who actually don't have an empowerment, but who would then not be able to have the assisted death that Baroness Hayter and others
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might wish them to be able to avail themselves of. My Lords, I think that even this
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My Lords, I think that even this small group, which I didn't expect there to be so much rich conversation about, indicates why conversation about, indicates why care homes really are an important focus for the bill. I absolutely focus for the bill. I absolutely want to echo the the points made by the noble Lady Baroness Finlay the noble Lady Baroness Finlay about care home workers, and they haven't been consulted, and I would
Then, for whatever reason, the medication was changed and this was nothing to do with dementia or mental capacity. This was to do with blood pressure, and the medicine was taken away. Something else was put in its place and my father returned. It was like some sort of it happened to be around Easter. It was like some Easter resurrection, because he was then able to be normally functioning as he had been before. He then got pneumonia, went into hospital and was let out into a care home and in the car home, they said were slightly worried about cognitive decline, cognitive impairment and at a review meeting they went through the medications and I said, can you tell me everything is on? And they then listed the medicine again, Doxazosin.
And I said, well, why is he on that? That caused problems before? And they went, oh, we don't know really. The hospital put him on it. And there'd been nothing in his medical notes to say, don't, don't use this medication. So the new GP, to whom he'd been referred, spoke to me on the phone and she 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, well, to be honest, there isn't 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. And so the view was they wouldn't bother testing my father for capacity. Now, my father did subsequently have on his death certificate that he had vascular dementia. So maybe if full capacity tests had been done, that would have been diagnosed at a point before he died rather than after he died, because it was never fully diagnosed while he was alive.
There was merely a suggestion that there might be an issue. But the point is that if medication can actually affect somebody who would otherwise have capacity, that might affect the the resident that the noble Lady Baroness Hayter referred to in a nursing home, that person could equally get an infection or be prescribed something to for which the contraindications. But would there be sufficient recognition of that? And I think although some nursing homes will have brilliant care, not all of them will.
And my father was.
**** Possible New Speaker ****
Even more if your father or my husband was at home all day without husband was at home all day without any medical or nursing staff around them, these people are actually more likely to have those more likely to have those infections picked up then. Then people of the of the equivalent who
**** Possible New Speaker ****
people of the of the equivalent who are living at home. I. I can see a point to that. But
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I can see a point to that. But the the message that I was given by the mental health practitioner who I had come round me from the mental health team, I think he was a psychiatrist, basically said, once somebody is in a home, these tests become much more difficult because of the nature of the environment. And I think it may may differ from home to home. But and yes, when my father had pneumonia and was clearly delirious, then he was at home when that happened.
But if there are concerns, then surely we should actually be looking at making sure that people have if they have cognitive impairment, we know that's the case. But if somebody doesn't have cognitive impairment, if there are short term issues which are being discussed in the amendments, particularly 111 and 112, then in terms of those people who do want an assisted death, surely they would want it ruled out that they had some sort of cognitive impairment, if indeed it is something that is temporary and reversible.
And I think that's the sort of thing that we really need to get right, because it's not only for those people who don't who who do have an empowerment, but for those who actually don't have an empowerment, but who would then not be able to have the assisted death that Baroness Hayter and others
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might wish them to be able to avail themselves of. My Lords, I think that even this
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My Lords, I think that even this small group, which I didn't expect there to be so much rich conversation about, indicates why conversation about, indicates why care homes really are an important focus for the bill. I absolutely focus for the bill. I absolutely want to echo the the points made by the noble Lady Baroness Finlay the noble Lady Baroness Finlay about care home workers, and they haven't been consulted, and I would
17:08
Baroness Fox of Buckley (Non-affiliated)
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Baroness Fox of Buckley (Non-affiliated)
like to ask the noble Lord noble and learned Lord, whether he might make a commitment to meet up with make a commitment to meet up with representatives of the care sector to discuss the very real issues to discuss the very real issues that they will have created by this bill if it passes. Because what we can recognise is that many of the people who will in society, be people who will in society, be eligible at some point for assisted death if the bill passes, will probably be in care homes, because that's where elderly people are who might well get terminal diagnoses, right? Rather than 14 year olds.
You're talking about a different cohort. So at least that has to be considered. And I think that therefore some of the previous contributions been just been very helpful. And I really wanted to thank the noble Lord Lord Blencathra for laying it out so clearly about why this should matter to to us all. I somewhere between the noble Lord Lord Deben and the noble Lady Baroness Hayter in terms of, you know, care homes. Because I think for the purposes of this discussion, I'd rather not go down the kind of care home horror story scenario.
But I think that even if you accept care homes as a positive places in general, there's still huge challenges for this bill in relation to them. So what if I can just kind of lay out some some of those things? I do want to say that despite the horror stories, in most instances, care homes are incredibly important to society's care of the elderly and the frail. And although they're too often neglected, understatement of the year by state support, they are fulfilling an incredibly important public service.
By and large care workers that I know and have encountered, you know, personally, far too many of them for a variety of reasons. But those people are heroic. They're poorly paid, underappreciated and absolutely overworked. And we know there's a massive turnover of staff. And these things have been, you know, well covered in different discussions. 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, right? No matter which way, you know, despite all that, we have to be realistic in care homes.
It is difficult, challenging circumstances and we have got a social care crisis, which we talk about all the time. And this is the living example of the social care crisis. There's not enough spaces in care homes. They can be chaotic, not because of the staff or the or what have you. And actually, in a day to day sense in care homes, standard mental capacity assessments are made by overworked care workers who are not clinical professionals. And I do worry that that those 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.
Guess what? Assisted dying. I mean, I think we've got to recognise that's a possible concern. I and I and I think whether we, we, you know, that I'm slightly contradicting myself now, but we do have to recognise that under the kind of pressures that people are in, many elderly people in care homes have had things like do not resuscitate, have had inappropriate diagnosis one way or another. And also, by the way, I, I can't remember. I, I think Baroness O'Loan made the point, you know, that they I've been in situations where an elderly person has been given their meal, given their drinks, and it's been ticked, eaten and and drunk and they haven't.
Right? Because they didn't know what it was, they didn't know what the food was, what the drink was, but it was ticked away. That wasn't cruelty that was rushing around. They didn't not feed them. They weren't starving them, but they didn't have time to sit down and do anything about it. So anyway, you've got all that goes on. So but the thing about it is why this matters is because a large number of people who may fall into eligibility because they're terminally ill will be people, as I say, whose capacity is needs to be assessed, and they will live in care homes.
And the problem is, is that care homes are a gathering of people who have fluctuating cognition. That's the main thing that goes on in care homes. Beyond care is cognition changes all the time. So the idea you're going to have a firm, autonomous decision made in those circumstances, at the very least, needs to be queried slightly. We're talking about UTIs, dehydration, infection or the effects of medication. And of course, the big one is undiagnosed dementia, early dementia that nobody's noticed, which the Alzheimer's Society data shows that only two that only two thirds of those with dementia have received a formal diagnosis.
Sadly, the diagnosis rate is, you know, there's massive waiting lists. The diagnosis rate in Wales, inevitably, sadly, is even lower. And but there's also hidden dementia. Not even anyone trying to get the people assessed yet, but it's nonetheless there. And because of the heightened risks of cognitive impairment issues and this this in instability in cognition, I think that we definitely need to take the the desire of these amendments seriously, that we need to have specialist clinical assessments to ensure that capacity means capacity and is not part of a good days, bad days scenario.
So just on the good days. But anyone who's had any relatives in a care home or been to care home to spend any time, you will know that the about the good days bad days situation. You can go in one day, chat away to a coherent and articulated older person and the next time you see them, they're completely incoherent and confused. Go back and they're chatting away again. I did want to, you know, relate one one time with my mother, who I mean, I have to say that my mother did have quite a number of deathbed scenes, by which I don't mean she was melodramatic.
I mean, we kept being told she was about to die, which just show you that terminal illness diagnosis is unreliable because she got better over many a year, as they say. But anyway, she was in one instance, she'd had a UTI. Then she got pneumonia. Deathbed scene, disorientated black mood. And she said to me, and you know what's the point? She wanted to give up. She was in a desperate state and I thought I was saying goodbye to her. Days later I went to see her.
She was bright, optimistic, holding court about politics while watching the news. Yes, I take after my mother in the TV room of the of the the care home. And I said to her, oh, it's good that you're quite bright. You were a bit depressed last week and she said, don't be silly. I don't get depressed. And I've never been happier. In my question to the noble Lord, Lord noble and learned Lord, Faulkner. Should capacity be such a lottery, depending on which state the person is having their assessment for capacity? When the decision is a life and death decision.
Not a joke that I can tell in a speech here, but that actually, if she was on a bad day or a good day, it would make a difference to whether she would actually sign up for assisted death and be deemed to have capacity. If a patient with undiagnosed dementia, it would. They would would the noble and learned Lord feel happy that that has been tackled. And then the final thing I want sorry, I'm slightly distracted. The final thing I wanted to say.
Sorry. Anyway, I think I think you've got the gist of what I'm saying, I, I do, I do however, believe sorry, I know during Covid we recognised that there was the need to treat care homes specially and differently than anywhere else. Sadly, in that instance it was at the great expense of care homes in the elderly who were locked away from their family and loved ones and in many instances died as a consequence of the wrong policy. But it is also the case that during that time we did recognise that care homes have a special.
We as a society have a special responsibility to the elderly in care homes and therefore surely this bill can create special measures to ensure that care homes are people who live in. Care homes can have all that we're asking for. Very modest is that proper clinical, holistic assessment is done of capacity and it is not left to chance. Sorry.
You're talking about a different cohort. So at least that has to be considered. And I think that therefore some of the previous contributions been just been very helpful. And I really wanted to thank the noble Lord Lord Blencathra for laying it out so clearly about why this should matter to to us all. I somewhere between the noble Lord Lord Deben and the noble Lady Baroness Hayter in terms of, you know, care homes. Because I think for the purposes of this discussion, I'd rather not go down the kind of care home horror story scenario.
But I think that even if you accept care homes as a positive places in general, there's still huge challenges for this bill in relation to them. So what if I can just kind of lay out some some of those things? I do want to say that despite the horror stories, in most instances, care homes are incredibly important to society's care of the elderly and the frail. And although they're too often neglected, understatement of the year by state support, they are fulfilling an incredibly important public service.
By and large care workers that I know and have encountered, you know, personally, far too many of them for a variety of reasons. But those people are heroic. They're poorly paid, underappreciated and absolutely overworked. And we know there's a massive turnover of staff. And these things have been, you know, well covered in different discussions. 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, right? No matter which way, you know, despite all that, we have to be realistic in care homes.
It is difficult, challenging circumstances and we have got a social care crisis, which we talk about all the time. And this is the living example of the social care crisis. There's not enough spaces in care homes. They can be chaotic, not because of the staff or the or what have you. And actually, in a day to day sense in care homes, standard mental capacity assessments are made by overworked care workers who are not clinical professionals. And I do worry that that those 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.
Guess what? Assisted dying. I mean, I think we've got to recognise that's a possible concern. I and I and I think whether we, we, you know, that I'm slightly contradicting myself now, but we do have to recognise that under the kind of pressures that people are in, many elderly people in care homes have had things like do not resuscitate, have had inappropriate diagnosis one way or another. And also, by the way, I, I can't remember. I, I think Baroness O'Loan made the point, you know, that they I've been in situations where an elderly person has been given their meal, given their drinks, and it's been ticked, eaten and and drunk and they haven't.
Right? Because they didn't know what it was, they didn't know what the food was, what the drink was, but it was ticked away. That wasn't cruelty that was rushing around. They didn't not feed them. They weren't starving them, but they didn't have time to sit down and do anything about it. So anyway, you've got all that goes on. So but the thing about it is why this matters is because a large number of people who may fall into eligibility because they're terminally ill will be people, as I say, whose capacity is needs to be assessed, and they will live in care homes.
And the problem is, is that care homes are a gathering of people who have fluctuating cognition. That's the main thing that goes on in care homes. Beyond care is cognition changes all the time. So the idea you're going to have a firm, autonomous decision made in those circumstances, at the very least, needs to be queried slightly. We're talking about UTIs, dehydration, infection or the effects of medication. And of course, the big one is undiagnosed dementia, early dementia that nobody's noticed, which the Alzheimer's Society data shows that only two that only two thirds of those with dementia have received a formal diagnosis.
Sadly, the diagnosis rate is, you know, there's massive waiting lists. The diagnosis rate in Wales, inevitably, sadly, is even lower. And but there's also hidden dementia. Not even anyone trying to get the people assessed yet, but it's nonetheless there. And because of the heightened risks of cognitive impairment issues and this this in instability in cognition, I think that we definitely need to take the the desire of these amendments seriously, that we need to have specialist clinical assessments to ensure that capacity means capacity and is not part of a good days, bad days scenario.
So just on the good days. But anyone who's had any relatives in a care home or been to care home to spend any time, you will know that the about the good days bad days situation. You can go in one day, chat away to a coherent and articulated older person and the next time you see them, they're completely incoherent and confused. Go back and they're chatting away again. I did want to, you know, relate one one time with my mother, who I mean, I have to say that my mother did have quite a number of deathbed scenes, by which I don't mean she was melodramatic.
I mean, we kept being told she was about to die, which just show you that terminal illness diagnosis is unreliable because she got better over many a year, as they say. But anyway, she was in one instance, she'd had a UTI. Then she got pneumonia. Deathbed scene, disorientated black mood. And she said to me, and you know what's the point? She wanted to give up. She was in a desperate state and I thought I was saying goodbye to her. Days later I went to see her.
She was bright, optimistic, holding court about politics while watching the news. Yes, I take after my mother in the TV room of the of the the care home. And I said to her, oh, it's good that you're quite bright. You were a bit depressed last week and she said, don't be silly. I don't get depressed. And I've never been happier. In my question to the noble Lord, Lord noble and learned Lord, Faulkner. Should capacity be such a lottery, depending on which state the person is having their assessment for capacity? When the decision is a life and death decision.
Not a joke that I can tell in a speech here, but that actually, if she was on a bad day or a good day, it would make a difference to whether she would actually sign up for assisted death and be deemed to have capacity. If a patient with undiagnosed dementia, it would. They would would the noble and learned Lord feel happy that that has been tackled. And then the final thing I want sorry, I'm slightly distracted. The final thing I wanted to say.
Sorry. Anyway, I think I think you've got the gist of what I'm saying, I, I do, I do however, believe sorry, I know during Covid we recognised that there was the need to treat care homes specially and differently than anywhere else. Sadly, in that instance it was at the great expense of care homes in the elderly who were locked away from their family and loved ones and in many instances died as a consequence of the wrong policy. But it is also the case that during that time we did recognise that care homes have a special.
We as a society have a special responsibility to the elderly in care homes and therefore surely this bill can create special measures to ensure that care homes are people who live in. Care homes can have all that we're asking for. Very modest is that proper clinical, holistic assessment is done of capacity and it is not left to chance. Sorry.
17:17
Lord Wolfson of Tredegar (Conservative)
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Lord Wolfson of Tredegar (Conservative)
My Lords, I am grateful to my learned friend. My noble friend. learned friend. My noble friend. That's where I was this morning, my noble friend Lord Blencathra for opening the debate on this group. opening the debate on this group. He is right that we should consider carefully how the most vulnerable will be protected under this legislation, and having a multidisciplinary specialist review before a person in a care home is certified to have capacity does seem an interesting and a sensible safeguard.
I must say. 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's something which 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 in old age. And I must say, it seems to me that both the evidence, so to speak, the personal experience of the noble Baroness, Lady Hayter, and also the experience of my noble friend Lord Deben can can both be right.
It's likely there is excellent there are excellent care homes, and there are also care homes which need improvement. And I am afraid that is probably the society we live in. Effective communication is a challenge for older people, particularly face, and this is an obstacle for the process under the bill when it comes to assessing capacity. And that is why it does seem sensible for specialists to be involved when the person requesting assistance is in a care home, because we also have to consider the risks of institutionalisation, which I know from my experience, certainly can be a factor for people in care homes as well.
And so I would be grateful if the noble Baroness, the Minister, could confirm what the government's conclusion are on this proposal in terms of workability, would it be prohibitively costly, or is it something that could, in fact be delivered? Turning to the amendment from my noble friend Lady Eaton, the additional process and heightened evidential standard for persons in care homes is also a constructive and interesting suggestion. And in that regard, I would invite the Minister to update the Committee on whether the government has considered the two separate proposals in this group and come to a view on which would be the more workable, the more effective if implemented, because that assessment would, I think, not only be helpful to the committee, but might also enable the House in due course to make a more informed decision on the best way to improve this part of the bill at Report stage.
And 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 stage.
I must say. 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's something which 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 in old age. And I must say, it seems to me that both the evidence, so to speak, the personal experience of the noble Baroness, Lady Hayter, and also the experience of my noble friend Lord Deben can can both be right.
It's likely there is excellent there are excellent care homes, and there are also care homes which need improvement. And I am afraid that is probably the society we live in. Effective communication is a challenge for older people, particularly face, and this is an obstacle for the process under the bill when it comes to assessing capacity. And that is why it does seem sensible for specialists to be involved when the person requesting assistance is in a care home, because we also have to consider the risks of institutionalisation, which I know from my experience, certainly can be a factor for people in care homes as well.
And so I would be grateful if the noble Baroness, the Minister, could confirm what the government's conclusion are on this proposal in terms of workability, would it be prohibitively costly, or is it something that could, in fact be delivered? Turning to the amendment from my noble friend Lady Eaton, the additional process and heightened evidential standard for persons in care homes is also a constructive and interesting suggestion. And in that regard, I would invite the Minister to update the Committee on whether the government has considered the two separate proposals in this group and come to a view on which would be the more workable, the more effective if implemented, because that assessment would, I think, not only be helpful to the committee, but might also enable the House in due course to make a more informed decision on the best way to improve this part of the bill at Report stage.
And 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 stage.
17:21
Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
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Baroness Merron, The Parliamentary Under-Secretary for Health and Social Care (Labour)
My Lords, I'm most grateful to >> My Lords, I'm most grateful to all noble Lords who have contributed to this debate today contributed to this debate today regarding assessing capacity in care homes. My remarks, as your Lordships House will be aware, will be limited to the areas where the government has assessed that there may be major technical or operational workability concerns, and to the noble Lord, Lord Blencathra, that will include matters relating to the EC. I know that was already picked up in his own characteristic way.
The noble Lord Lord Carlile, but I do have to gently say to the noble Lord Lord Blencathra, and I know he's aware of this because of his experience that government Ministers do have a duty to advise your Lordships House of implications. And as I also explained in the last group of amendments, it is ultimately a decision when we're talking about the. For what Parliament wishes to do about that. So I'm sorry to frustrate the noble Lord by repetition, but it's because it's appropriate to the relevant considerations, and I'll just ask him not to listen if he feels it's very irritating.
This might be helpful to the noble Lord, Lord Wolfson as well, but in in reference to amendments 112 and 111, in the name of the noble Lady Baroness Easton, spoken to by the noble Lady Baroness alone, they aim to strengthen safeguards for care and nursing home residents by ensuring that capacity in these cases is established through specialist clinical assessment and ensuring that capacity assessments seek to rule out reversible medical causes of impaired or fluctuating capacity.
The government does consider that amendment one one 1st May be inconsistent with the Mental Capacity Act's assessment framework, which does not require enhanced assessment for certain groups, and that's something I dealt with in more detail in the last group two. So by requiring expert psychiatric input before capacity is confirmed, Amendment Amendment 112 could create inconsistency with the MCA's presumption of capacity and the principle of proportionate decision specific assessments to amendment 110A tabled by the noble Lord Lord Blencathra.
This would affect care and nursing home residents capacity assessments and would require expert psychiatric input before capacity is confirmed again. This could create an 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 or nursing home residents and all other citizens. In assessing assisted dying, and the noble Lord Lord Blencathra may wish to close his ears at this point, because this difference in treatment could give rise to challenge under the ECHR, particularly article eight, which refers to respect for private and family life, and article 14 prohibition of discrimination.
The differences in treatment would need to be justified, necessary and proportionate. And lastly, all of the amendments in this group do. Of course.
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If the House decided that the
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If the House decided that the conditions in a care home were such that it would be better to have a that it would be better to have a system which was slightly different from those who were not in a care home, surely that is justification home, surely that is justification enough? Is it not really to I don't enough? Is it not really to I don't as as as she knows I'm entirely in favour of the ECHR and disagree very strongly with my noble friend, but I just want to say, does seem to me that this is a bit of a red herring.
Frankly, the fact of the matter is that if it were the policy which was put forward, I think it very unlikely that anyone
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would find it possible to stop it under the. Well, it wouldn't be possible in
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Well, it wouldn't be possible in any case to stop it in that way, any case to stop it in that way, because of course, it wouldn't because of course, it wouldn't invalidate legislation just drawing the House's attention to the matter, the House's attention to the matter, but it would require further work. And of course, as the noble Lord will know, if a court finds that primary legislation is incompatible, it may make a declaration of incompatibility. And as I say, whilst it doesn't invalidate legislation, it's usual practice for the government to consider and
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to address these matters. The noble Baroness for giving way, I'm afraid she's between a rock and a hard place here, because rock and a hard place here, because if these amendments were not passed, she may find that the government is she may find that the government is in breach of articles nine, ten and 11 by not passing them. And I would be grateful if she were to consult be grateful if she were to consult her lawyers in relation to that matter.
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matter. I will consult my lawyers. With pleasure. Lastly, all of the amendments in this group are address complex issues and if they pass, considerable further policy and drafting work would be likely to be required.
The noble Lord Lord Carlile, but I do have to gently say to the noble Lord Lord Blencathra, and I know he's aware of this because of his experience that government Ministers do have a duty to advise your Lordships House of implications. And as I also explained in the last group of amendments, it is ultimately a decision when we're talking about the. For what Parliament wishes to do about that. So I'm sorry to frustrate the noble Lord by repetition, but it's because it's appropriate to the relevant considerations, and I'll just ask him not to listen if he feels it's very irritating.
This might be helpful to the noble Lord, Lord Wolfson as well, but in in reference to amendments 112 and 111, in the name of the noble Lady Baroness Easton, spoken to by the noble Lady Baroness alone, they aim to strengthen safeguards for care and nursing home residents by ensuring that capacity in these cases is established through specialist clinical assessment and ensuring that capacity assessments seek to rule out reversible medical causes of impaired or fluctuating capacity.
The government does consider that amendment one one 1st May be inconsistent with the Mental Capacity Act's assessment framework, which does not require enhanced assessment for certain groups, and that's something I dealt with in more detail in the last group two. So by requiring expert psychiatric input before capacity is confirmed, Amendment Amendment 112 could create inconsistency with the MCA's presumption of capacity and the principle of proportionate decision specific assessments to amendment 110A tabled by the noble Lord Lord Blencathra.
This would affect care and nursing home residents capacity assessments and would require expert psychiatric input before capacity is confirmed again. This could create an 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 or nursing home residents and all other citizens. In assessing assisted dying, and the noble Lord Lord Blencathra may wish to close his ears at this point, because this difference in treatment could give rise to challenge under the ECHR, particularly article eight, which refers to respect for private and family life, and article 14 prohibition of discrimination.
The differences in treatment would need to be justified, necessary and proportionate. And lastly, all of the amendments in this group do. Of course.
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If the House decided that the
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If the House decided that the conditions in a care home were such that it would be better to have a that it would be better to have a system which was slightly different from those who were not in a care home, surely that is justification home, surely that is justification enough? Is it not really to I don't enough? Is it not really to I don't as as as she knows I'm entirely in favour of the ECHR and disagree very strongly with my noble friend, but I just want to say, does seem to me that this is a bit of a red herring.
Frankly, the fact of the matter is that if it were the policy which was put forward, I think it very unlikely that anyone
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would find it possible to stop it under the. Well, it wouldn't be possible in
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Well, it wouldn't be possible in any case to stop it in that way, any case to stop it in that way, because of course, it wouldn't because of course, it wouldn't invalidate legislation just drawing the House's attention to the matter, the House's attention to the matter, but it would require further work. And of course, as the noble Lord will know, if a court finds that primary legislation is incompatible, it may make a declaration of incompatibility. And as I say, whilst it doesn't invalidate legislation, it's usual practice for the government to consider and
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to address these matters. The noble Baroness for giving way, I'm afraid she's between a rock and a hard place here, because rock and a hard place here, because if these amendments were not passed, she may find that the government is she may find that the government is in breach of articles nine, ten and 11 by not passing them. And I would be grateful if she were to consult be grateful if she were to consult her lawyers in relation to that matter.
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matter. I will consult my lawyers. With pleasure. Lastly, all of the amendments in this group are address complex issues and if they pass, considerable further policy and drafting work would be likely to be required.
17:27
Lord Falconer of Thoroton (Labour)
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Lord Falconer of Thoroton (Labour)
Could I again thank the Baroness >> Could I again thank the Baroness Smith of Newnham and the Baroness Hayter of Kentish Town for sharing? Quite significant, probably painful experiences? Could I also thank the experiences? Could I also thank the Baroness Fox for doing the same in relation to the the the last months or years of her mother's life as well? The these two groups essentially deal with should there be special provision for people in care homes and two routes are suggested.
The first is that there be a higher evidential standard, which is Baroness Eaton amendment advanced by the Baroness O'Loan. And the second is that there be a series of additional tests that should be raised. I think everybody in the chamber is agreed that care homes vary across the country. There are those of the highest possible standards, and there are those which don't quite have the same high standards. It's also the case that a lot one should not confuse and Baroness Watkins made this point very forcefully and effectively, that there's people who are in long term care, and there are those who are in high tech nursing homes, and they are being rather elided here.
People will become institutionalised. People may be suffering from long term cognitive problems in relation to being in in long term care homes. The question that is raised, should there be additional steps taken beyond those provided in the bill to check that such people, in particularly long term care homes, have got capacity? The current arrangements require that the coordinating doctor is satisfied after discussion with the patient and anybody else. They've got capacity. Similarly, in relation to the independent doctor, then the panel have got to be satisfied.
And then the coordinating doctor has got to make a second declaration which satisfies, has got to witness the second declaration of the patient. And the coordinating doctor can only witness that second declaration if he or she is satisfied that, among other things, the patient has capacity. And then fifthly, the doctor providing the assistance as also got to be satisfied that the patient has capacity. So the question that is posed is, despite the fact that there are these five separate occasions on which a doctor or a panel have to be satisfied of capacity, should one.
In addition, for somebody in a long term care home make additional provision for separate assessments? Or should one have a higher evidential standard, the particular problems that have been identified in the course of this debate is, first, that people may be suffering from some form of dementia or vascular problem, that this may not be immediately apparent, and it may not be apparent, one assumes, because they may be alone in the care home. I understand that and sympathise with it, but I'm not sure that that necessarily would either justify or provide greater protection if one went beyond the five existing assessments that have been suggested, and the one knows and Baroness Smith of Newnham rather powerful speech illustrated, this one's living with elderly parents at home, they frequently get to a position where and actually from from.
I think everybody must have had this experience. One's elderly parents often are quite good at disguising a decline, and if one is trying to check whether they've got capacity, I suspect that the five occasions that I'm referring to will be a lot more effective than what one can do with one one's oneself, with one's parents. The other issue, which was, and I see the Baroness Smith of Newnham looking sceptical, and the moment I said it, I was thinking, well, may or may not be right.
I think it would depend. Probably so. I think her scepticism was, if I may say so, justified. And then the other, the other issue was the, the fluctuating capacity, the Baroness Fox example of her mother, who was who was near to death and, and and not understanding anything, and then in a very short period thereafter was completely on top of it and denied that she'd ever been depressed and always felt that she had good spirits, having a system that involves five separate assessments, I think provides adequate protection.
And I thought very carefully about this, but I do think to insist on yet more tests for people in care is is not either required or appropriate separately from those issues, the noble Lord Lord Carlile raised the question of what is going to be the effect of, for example, Christian based care homes and there legitimate entitlement under clause 31 to withdraw. May I deal with that when we get to clause 31 rather than now, because there are a series of
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amendments that deal with that. This is the second Friday we've
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This is the second Friday we've had where the target has been ten groups and amendments, and we've groups and amendments, and we've come well below half on both of those. It is inconceivable that if we go on scrutinising this bill in we go on scrutinising this bill in the way that we've been doing, it's never going to reach the statute book. So is it not time that the book. So is it not time that the noble Lords and Leonard Lord really considered what he can salvage from this bill, where there's agreement on both sides of the House, so at least something will get through, which improves the lot for people in this country.
This.
The first is that there be a higher evidential standard, which is Baroness Eaton amendment advanced by the Baroness O'Loan. And the second is that there be a series of additional tests that should be raised. I think everybody in the chamber is agreed that care homes vary across the country. There are those of the highest possible standards, and there are those which don't quite have the same high standards. It's also the case that a lot one should not confuse and Baroness Watkins made this point very forcefully and effectively, that there's people who are in long term care, and there are those who are in high tech nursing homes, and they are being rather elided here.
People will become institutionalised. People may be suffering from long term cognitive problems in relation to being in in long term care homes. The question that is raised, should there be additional steps taken beyond those provided in the bill to check that such people, in particularly long term care homes, have got capacity? The current arrangements require that the coordinating doctor is satisfied after discussion with the patient and anybody else. They've got capacity. Similarly, in relation to the independent doctor, then the panel have got to be satisfied.
And then the coordinating doctor has got to make a second declaration which satisfies, has got to witness the second declaration of the patient. And the coordinating doctor can only witness that second declaration if he or she is satisfied that, among other things, the patient has capacity. And then fifthly, the doctor providing the assistance as also got to be satisfied that the patient has capacity. So the question that is posed is, despite the fact that there are these five separate occasions on which a doctor or a panel have to be satisfied of capacity, should one.
In addition, for somebody in a long term care home make additional provision for separate assessments? Or should one have a higher evidential standard, the particular problems that have been identified in the course of this debate is, first, that people may be suffering from some form of dementia or vascular problem, that this may not be immediately apparent, and it may not be apparent, one assumes, because they may be alone in the care home. I understand that and sympathise with it, but I'm not sure that that necessarily would either justify or provide greater protection if one went beyond the five existing assessments that have been suggested, and the one knows and Baroness Smith of Newnham rather powerful speech illustrated, this one's living with elderly parents at home, they frequently get to a position where and actually from from.
I think everybody must have had this experience. One's elderly parents often are quite good at disguising a decline, and if one is trying to check whether they've got capacity, I suspect that the five occasions that I'm referring to will be a lot more effective than what one can do with one one's oneself, with one's parents. The other issue, which was, and I see the Baroness Smith of Newnham looking sceptical, and the moment I said it, I was thinking, well, may or may not be right.
I think it would depend. Probably so. I think her scepticism was, if I may say so, justified. And then the other, the other issue was the, the fluctuating capacity, the Baroness Fox example of her mother, who was who was near to death and, and and not understanding anything, and then in a very short period thereafter was completely on top of it and denied that she'd ever been depressed and always felt that she had good spirits, having a system that involves five separate assessments, I think provides adequate protection.
And I thought very carefully about this, but I do think to insist on yet more tests for people in care is is not either required or appropriate separately from those issues, the noble Lord Lord Carlile raised the question of what is going to be the effect of, for example, Christian based care homes and there legitimate entitlement under clause 31 to withdraw. May I deal with that when we get to clause 31 rather than now, because there are a series of
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amendments that deal with that. This is the second Friday we've
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This is the second Friday we've had where the target has been ten groups and amendments, and we've groups and amendments, and we've come well below half on both of those. It is inconceivable that if we go on scrutinising this bill in we go on scrutinising this bill in the way that we've been doing, it's never going to reach the statute book. So is it not time that the book. So is it not time that the noble Lords and Leonard Lord really considered what he can salvage from this bill, where there's agreement on both sides of the House, so at least something will get through, which improves the lot for people in this country.
This.
17:34
Lord Blencathra (Conservative)
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Lord Blencathra (Conservative)
Once again, has been a good >> Once again, has been a good little debate. And and with more noble Lord participating than I expected, could I say the whole house admires the noble Lady Baroness 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. And you know, my Lords, when we were in the House of Commons, we could never tell these personal stories about disabilities because we'd be regarded as showing a weakness and therefore not suitable to fight for our constituents.
But the wonderful thing about this debate over the last few weeks is that noble Lords from all sides have been able to relate stories about their own ability, their own disabilities, their own afflictions, their own illnesses, and those of their their close relatives. And that has added a tremendous amount of wisdom and compassion to our debate. Now I must say to the noble Lady, my, my amendment does not throw anyone out. It does not excuse anyone from getting treatment. We just want extra care for it.
As my noble friend Lord Deben said, and the noble Lord noble and learned Lord Lord Carlile there's good care homes, there's bad care homes, and there's the downright ugly care homes. And we must and our amendments are designed to deal with those which are not quite up to scratch. The noble Lady Baroness O'Loan made the point that dementia sufferers are even more vulnerable, and our amendments between Baroness Nye, noble Lady, Baroness Eaton, Baroness Lawlor and myself 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. Now I must come now to the point. The important point made by the noble and learned Lord Carlile and backed up by my noble friend Lord Deben. And it's about the. My Lords, I am a member of the Council of Europe. I am elected to a specialist committee on on observing elections and former Soviet Union countries. I was on the committee which elected judges, and I'm pleased to say we elected.
And and I was one of those who voted for superb English QC, who was just retiring this year to be a judge. And I'm also a substitute on election committee. I have no I totally support the ECHR when I am critical of are some of the judgements we've had in the United Kingdom from some of our immigration judges, who I don't think I've probably read the ECHR, so I'm not. I have no problems with it. I'm totally in support of it. And the principle, I'm just worried about some of the judgements.
Now, the other point that noble and learned Lord made, and he ended with this responsibility for this must not rest with care homes alone. And I agree entirely. The noble Lady Baroness Finlay made the point that some care home staff are very worried about operating this. And of course the note. Sorry, the noble and learned Lord Carlile made the point about mission care and Christians and homes feeling they could not work it either. My noble friend Baroness Lloyd Laura made the simple point.
She said a higher bar is necessary for care homes and the noble Lady Baroness Smith of Newnham, whom we also grateful for revealing the story of her father and she stressed the vagaries of cognitive decline very, very differently depending on the medication one is on. And I have experience of that. The lady Baroness Fox of Buckley said she doesn't want to talk about some of the horror stories in in care homes, and none of us want to do that. Although every Mother Month we read about some of the appalling treatment that happens, particularly to those suffering from severe dementia.
But she said there is a social care home crisis and that is right. And you know, she was spot on about the food ticking the box very briefly. I must tell the house a few years ago I was in Saint Thomas's early on in this when I had a relapse, and there was an old boy in a bed in the corner, aged 82, and that was that time when we would tick the box for what we wanted next day. And the members recall that the government appointed Mr.
Lloyd Grossman to review menus in NHS hospitals, and he did review them. He just wrote them in fancy language. So the choice for one morning was ground beef, suffused with basil and scented and scented with with with a. Carrot juice or something with chopped potatoes. This old boy hadn't a clue what it meant. I managed to get to him and say it's mince and tatties, and he was able to do it. He all he would ask for. The nurse said, oh, you don't want anything, Mr.
Smith? He just said porridge. Porridge? Oh, we can't give you porridge. There's all the choice of Mosley's. So my Lords, I won't belabour the point any further. But the same thing can happen in care homes as the noble Lady, Fox said. So she asked conclusion. How can how can one decide capacity between a patient who's on a good day and a patient who's on a bad day? And we would we and people in care homes need extra special measures to determine capacity.
My noble friend, Lord Lord Wolfson of Tredegar made an excellent point about care homes. There's good ones and bad ones. And again, he's asked the government to spell out what would be the consequences of my noble friend's amendment and my amendment, and what do the government think about it. And finally, coming to the sorry, I must say to the noble Lady, the Minister, I do I'm tempted to put down an amendment to the animal welfare bill to protect this poor rabbit, which has pulled out of the government's hat on every single one, that all our amendments are contrary to the.
And finally on the noble Lord, Lord Faulkner, I do say that our amendments may not be perfect, but I do think that the the consensus from all noble Lords who have spoken apart from the noble Lady Baroness Hayter, was that something more needs to be done for care homes. A little bit of extra protection is necessary. And if I could say to the noble and learned Lord, when we're dealing with 18, 21 and 25 year olds, he said, we need to think about possibly a bit of extra protection for them.
And he was right. I look forward to seeing his amendment on report, but the same goes here. We need a little bit more extra protection for people in care homes for the various reasons advanced by noble Lords. But having said that, I look forward to seeing those amendments at report. If not, we shall table some ourselves. And in the meantime, I beg leave to
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withdraw my amendment. Yeah. Lordships pleasure that this amendment be withdrawn. Amendment by leave withdrawn. Amendment 110 be Baroness Lawlor not moved. be Baroness Lawlor not moved. Amendment 111 not moved. Not. Amendment 111 not moved. Not. Amendment 112 not moved. Amendment 113 not moved. Amendment 114. Baroness not moved. Amendment 114A Baroness Keeley not moved. Amendment 115 Baroness Finlay not moved. Amendment 116 Lord Carlile not moved for now. Amendment 117 Baroness Hollins not moved.
The question is that clause three be agreed to. As many as that opinion will say. Content the contrary not contents. The contents have it. Amendment 118 Baroness Grey-Thompson not moved. Amendment 118A and 118B Lord Farmer not moved. Amendment 119 Baroness Grey-Thompson not moved. Amendment 119A Baroness Berridge not moved. Amendment 120 Lord Carlile of Berriew not moved. Amendment 120A Baroness Coffey not moved. And then in clause four, amendment 121 Lord in clause four, amendment 121 Lord
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Frost not moved. Not moved. My Lords, I beg to move that the house be now resumed.
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house be now resumed. Besides, on that question, can I just put two points on the record? The first thing we're finishing up The first thing we're finishing up slightly early, but just to make the point that some of us would have been perfectly happy to have been perfectly happy to continue until 6:00 to make some more progress. So this is the the government's decision. I do government's decision. I do understand, though, that we did have a bit of confusion at the beginning of the day on the adjourned group, so could I just flag to to the whip, perhaps for the government Chief whip to consider whether it would be possible? The first question is when we do have adjourned group and we have a list, perhaps the list can be published in some way so that there's clarity before we start proceedings about who was and wasn't here at the beginning of the group.
And that would avoid the problem that we had this morning. The other issue, though, which would have been an issue if we'd started the group today because of the lateness of the hour and the necessity of a significant number of members to leave early to get travel arrangements to in order to be able to get home. If we'd started the group, then a significant number of people who may well have wished to contribute to it would not have been able to contribute, even if we'd adjourned and then continued it next week.
And given that the government chief whip said that it was OK for members to leave early because of those travel situations, can the government chief Whip give some thought to whether, if we start a group in order to make progress and then we adjourn, if there are members that have had to leave for reasons of necessity of travel, whether they would still be permitted to participate in the group. When we resumed on the following occasion, I recognise that the variation to procedure, but it's about trying to work with the unusual circumstances we faced to make sure people can both participate, but we can also make the best use of the time and indeed comply with the House's ruling that we make more time available to make progress on the bills.
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Good point. Very good. I will refer the noble Lords comments to the usual channels.
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comments to the usual channels. Question is that House be resumed, as many of that opinion will say? Content the contrary not
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contents. The contents have it. Lord Jones.
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Lord Jones. My Lords, I beg to move that the House do now adjourn.
But the wonderful thing about this debate over the last few weeks is that noble Lords from all sides have been able to relate stories about their own ability, their own disabilities, their own afflictions, their own illnesses, and those of their their close relatives. And that has added a tremendous amount of wisdom and compassion to our debate. Now I must say to the noble Lady, my, my amendment does not throw anyone out. It does not excuse anyone from getting treatment. We just want extra care for it.
As my noble friend Lord Deben said, and the noble Lord noble and learned Lord Lord Carlile there's good care homes, there's bad care homes, and there's the downright ugly care homes. And we must and our amendments are designed to deal with those which are not quite up to scratch. The noble Lady Baroness O'Loan made the point that dementia sufferers are even more vulnerable, and our amendments between Baroness Nye, noble Lady, Baroness Eaton, Baroness Lawlor and myself 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. Now I must come now to the point. The important point made by the noble and learned Lord Carlile and backed up by my noble friend Lord Deben. And it's about the. My Lords, I am a member of the Council of Europe. I am elected to a specialist committee on on observing elections and former Soviet Union countries. I was on the committee which elected judges, and I'm pleased to say we elected.
And and I was one of those who voted for superb English QC, who was just retiring this year to be a judge. And I'm also a substitute on election committee. I have no I totally support the ECHR when I am critical of are some of the judgements we've had in the United Kingdom from some of our immigration judges, who I don't think I've probably read the ECHR, so I'm not. I have no problems with it. I'm totally in support of it. And the principle, I'm just worried about some of the judgements.
Now, the other point that noble and learned Lord made, and he ended with this responsibility for this must not rest with care homes alone. And I agree entirely. The noble Lady Baroness Finlay made the point that some care home staff are very worried about operating this. And of course the note. Sorry, the noble and learned Lord Carlile made the point about mission care and Christians and homes feeling they could not work it either. My noble friend Baroness Lloyd Laura made the simple point.
She said a higher bar is necessary for care homes and the noble Lady Baroness Smith of Newnham, whom we also grateful for revealing the story of her father and she stressed the vagaries of cognitive decline very, very differently depending on the medication one is on. And I have experience of that. The lady Baroness Fox of Buckley said she doesn't want to talk about some of the horror stories in in care homes, and none of us want to do that. Although every Mother Month we read about some of the appalling treatment that happens, particularly to those suffering from severe dementia.
But she said there is a social care home crisis and that is right. And you know, she was spot on about the food ticking the box very briefly. I must tell the house a few years ago I was in Saint Thomas's early on in this when I had a relapse, and there was an old boy in a bed in the corner, aged 82, and that was that time when we would tick the box for what we wanted next day. And the members recall that the government appointed Mr.
Lloyd Grossman to review menus in NHS hospitals, and he did review them. He just wrote them in fancy language. So the choice for one morning was ground beef, suffused with basil and scented and scented with with with a. Carrot juice or something with chopped potatoes. This old boy hadn't a clue what it meant. I managed to get to him and say it's mince and tatties, and he was able to do it. He all he would ask for. The nurse said, oh, you don't want anything, Mr.
Smith? He just said porridge. Porridge? Oh, we can't give you porridge. There's all the choice of Mosley's. So my Lords, I won't belabour the point any further. But the same thing can happen in care homes as the noble Lady, Fox said. So she asked conclusion. How can how can one decide capacity between a patient who's on a good day and a patient who's on a bad day? And we would we and people in care homes need extra special measures to determine capacity.
My noble friend, Lord Lord Wolfson of Tredegar made an excellent point about care homes. There's good ones and bad ones. And again, he's asked the government to spell out what would be the consequences of my noble friend's amendment and my amendment, and what do the government think about it. And finally, coming to the sorry, I must say to the noble Lady, the Minister, I do I'm tempted to put down an amendment to the animal welfare bill to protect this poor rabbit, which has pulled out of the government's hat on every single one, that all our amendments are contrary to the.
And finally on the noble Lord, Lord Faulkner, I do say that our amendments may not be perfect, but I do think that the the consensus from all noble Lords who have spoken apart from the noble Lady Baroness Hayter, was that something more needs to be done for care homes. A little bit of extra protection is necessary. And if I could say to the noble and learned Lord, when we're dealing with 18, 21 and 25 year olds, he said, we need to think about possibly a bit of extra protection for them.
And he was right. I look forward to seeing his amendment on report, but the same goes here. We need a little bit more extra protection for people in care homes for the various reasons advanced by noble Lords. But having said that, I look forward to seeing those amendments at report. If not, we shall table some ourselves. And in the meantime, I beg leave to
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withdraw my amendment. Yeah. Lordships pleasure that this amendment be withdrawn. Amendment by leave withdrawn. Amendment 110 be Baroness Lawlor not moved. be Baroness Lawlor not moved. Amendment 111 not moved. Not. Amendment 111 not moved. Not. Amendment 112 not moved. Amendment 113 not moved. Amendment 114. Baroness not moved. Amendment 114A Baroness Keeley not moved. Amendment 115 Baroness Finlay not moved. Amendment 116 Lord Carlile not moved for now. Amendment 117 Baroness Hollins not moved.
The question is that clause three be agreed to. As many as that opinion will say. Content the contrary not contents. The contents have it. Amendment 118 Baroness Grey-Thompson not moved. Amendment 118A and 118B Lord Farmer not moved. Amendment 119 Baroness Grey-Thompson not moved. Amendment 119A Baroness Berridge not moved. Amendment 120 Lord Carlile of Berriew not moved. Amendment 120A Baroness Coffey not moved. And then in clause four, amendment 121 Lord in clause four, amendment 121 Lord
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Frost not moved. Not moved. My Lords, I beg to move that the house be now resumed.
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house be now resumed. Besides, on that question, can I just put two points on the record? The first thing we're finishing up The first thing we're finishing up slightly early, but just to make the point that some of us would have been perfectly happy to have been perfectly happy to continue until 6:00 to make some more progress. So this is the the government's decision. I do government's decision. I do understand, though, that we did have a bit of confusion at the beginning of the day on the adjourned group, so could I just flag to to the whip, perhaps for the government Chief whip to consider whether it would be possible? The first question is when we do have adjourned group and we have a list, perhaps the list can be published in some way so that there's clarity before we start proceedings about who was and wasn't here at the beginning of the group.
And that would avoid the problem that we had this morning. The other issue, though, which would have been an issue if we'd started the group today because of the lateness of the hour and the necessity of a significant number of members to leave early to get travel arrangements to in order to be able to get home. If we'd started the group, then a significant number of people who may well have wished to contribute to it would not have been able to contribute, even if we'd adjourned and then continued it next week.
And given that the government chief whip said that it was OK for members to leave early because of those travel situations, can the government chief Whip give some thought to whether, if we start a group in order to make progress and then we adjourn, if there are members that have had to leave for reasons of necessity of travel, whether they would still be permitted to participate in the group. When we resumed on the following occasion, I recognise that the variation to procedure, but it's about trying to work with the unusual circumstances we faced to make sure people can both participate, but we can also make the best use of the time and indeed comply with the House's ruling that we make more time available to make progress on the bills.
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Good point. Very good. I will refer the noble Lords comments to the usual channels.
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comments to the usual channels. Question is that House be resumed, as many of that opinion will say? Content the contrary not
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contents. The contents have it. Lord Jones.
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Lord Jones. My Lords, I beg to move that the House do now adjourn.