Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Butler-Sloss
Main Page: Baroness Butler-Sloss (Crossbench - Life peer)Department Debates - View all Baroness Butler-Sloss's debates with the Department of Health and Social Care
(2 months, 3 weeks ago)
Lords ChamberMy Lords, while I oppose the Bill, I recognise we have heard arguments that people support it, so I am particularly relieved at the Motion of the noble Baroness, Lady Berger, to get some proper scrutiny of the Bill.
My main concern is that it is a badly flawed Bill, it needs radical improvement and, as many have already said, it is probably one of the most important Bills that this House will ever have to consider. However, this Bill is not the right way to go into law.
We start with 42 delegated powers, which will be dealt with by the Secretary of State, but more likely by the civil servants in the Department of Health. We are not asked to consider nearly all the crucial details of this enormously important Bill. We have already heard of the very real concerns of the Delegated Powers and Regulatory Reform Select Committee and the Constitution Committee. I do not remember ever before reading in such a report words like
“the power… is inappropriate and should be removed”,
and, among others,
“the highly inappropriate nature of Clause 37(7)”.
Is the panel intended to meet in public and hear evidence? Will it meet at all, or will it be a tick-box ceremony? Why is there no coroner check? Surely that is an obvious safeguard.
Assisted dying will be paid for by the NHS but, as so many have pointed out already, only 30% of palliative care is paid for, so this is an obvious inequality. I declare an interest as a former vice-president of the Exeter and Devon Hospiscare—a wonderful institution that helped a dying friend of mine to stay at home.
The process will require the preliminary assessment of the co-ordinating doctor, the independent doctor, the panel psychiatrist and the doctor at the death. Is the NHS ready to cope with this?
We should not ignore the very real concerns of several medical colleges, including the psychiatrists, who are very concerned about the flaws in the Bill. They are, of course, expected to provide panel members. I declare an interest as an honorary fellow of the Royal College of Psychiatrists.
It is not easy to assess when a patient will die within six months. The Lockerbie bomber lived for three years, as has already been said. Six months may also be very unfair to those with motor neurone disease or other similar diseases, who may not have the physical ability to take the final step they need to take.
Is this Bill intended to be the start? Is it to be amended shortly to increase the ability to help assisted dying to one year, two years or three years? Clearly, as others have said, this is a slippery slope. The possibility of coercion, or even more likely, the feeling of being a burden on others—especially a financial burden—is obvious.
As I have already said, this is a seriously flawed Bill. It is a Private Member’s Bill, and it is time the Government took it over and put it properly into order.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Butler-Sloss
Main Page: Baroness Butler-Sloss (Crossbench - Life peer)Department Debates - View all Baroness Butler-Sloss's debates with the Department of Health and Social Care
(3 weeks, 5 days ago)
Lords ChamberMy Lords, I shall be brief. I oppose the amendment. As the noble Lord, Lord Markham, said, this is a decision for the people of Wales to make—not for the people of England, who dominate this Parliament, both in the other place and here.
The problem arises because of the complexity of the devolution arrangements for Wales, and we could spend quite a lot of time—which I am sure no one wants to spend—going through it to try to understand why it has happened. In essence, it has arisen because the enabling of the Senedd to do anything is determined by criminal law; that is how the legislation has been drafted. That is not the case in Scotland: they have the freedom. That is denied to Wales because of the way that the devolution arrangements work. It cannot be right and fair for this position to remain. The noble Lord, Lord Markham, put his finger on what the solution ought to be.
We cannot adopt what has been suggested by the noble Baroness, Lady Coffey. If we did so, the Senedd would have no power to do anything because of those constitutional arrangements. Therefore, the solution that has been put forward, to delete Wales from the Bill, is a non-starter; we have to do something.
This is particularly important because, as has been said, although this is partly a great moral issue and partly an issue about the NHS, it is only in incidental effects a criminal law issue. The settlement makes it a criminal law issue, but we ought to allow the moral issue and the issue in relation to the NHS to be determined in Wales. If the Bill were to be passed in its current form, and then the Welsh Government decided that they did not want to implement it, the only people who would be able to obtain assisted dying in Wales would be those who were prepared to pay for it. That cannot conceivably be right.
The noble Baroness, Lady Smith of Llanfaes, and I have put down an amendment to try and resolve this. We have had it degrouped. I do not think any noble Lords have had much experience of reading the Government of Wales Act. The only experience noble Lords ought to have of doing that is if one suffers from insomnia.
In the coming period, we ought to settle down with the sponsors of the Bill and with the Government to try and work out a just solution to this problem; otherwise, I regret to say, the debate on the Floor of the House on the way in which we solve these problems will be time-consuming. It is not really the best way of dealing with such an important issue, which can be solved technically. I am sure everyone would agree with the noble Lord, Lord Markham, that it is a decision for the people of Wales and not for the people of England, who dominate this legislature. Wales should not be regarded as inferior to Scotland.
My Lords, bearing in mind that this is a Private Member’s Bill, it seems to me, as an Englishwoman, that whatever efforts are required, we should be, at the end of the day, removing Wales from it.
My Lords, in my modest experience of six departments in both Houses of Parliament, I have always come to the conclusion and repeated that Whitehall does not do devolution. By the way, I declare an interest: I live in England but within 10 miles of the border of Wales. Therefore, I commend the noble Lord, Lord Harper, on raising this in a practical fashion that probably nobody else in the House is able to do. I doubt that Members of Parliament in the other place had the opportunity to raise it in detail, because there will be MPs running on both sides of the border. I commend him on raising it, and I resent the fact that he was interrupted at the end.
My Lords, many years ago, in another place, I served on the pre-legislative scrutiny committee and was present taking what became the Mental Capacity Act through the House of Commons. When I came to your Lordships’ House in 2010, I was fortunate enough to secure a House of Lords inquiry to look post-legislatively at how the Mental Capacity Act was working. From the evidence we took at the time, we found that the ability of the medical profession—by which I mean not just doctors but all those across the piece, including social care workers—was not as ideal as it perhaps sounds in today’s Committee. Whatever is built into the Bill to assess either capacity or ability, there will need to be a heck of a lot of training for us all to feel comfortable that the professionals involved know how to go about their task.
I draw the Committee’s attention to the report last month of the National Audit Office, whose press release stated:
“The Department for Health and Social Care (DHSC) and NHS England (NHSE) do not clearly understand what proportion of palliative and end-of-life care is delivered by independent adult hospices, and therefore, how much they are reliant on the sector, or what the real impact of government funding is”.
We have heard that palliative care is patchy. I know from my own recent experience with a close relative that, had I not been somebody capable of organising it myself, it would not have taken place. We are not dealing with finite disciplines in the debate on this group, and I caution the Committee that it is not as perfect out there as it sounds today.
My Lords, I declare that I was a vice-president of Hospiscare in Exeter. I am probably the only person in this Committee who has tried cases of capacity, again and again, both as a High Court judge and in the Court of Appeal. One case was so difficult that the Court of Appeal, where I was presiding, sat until 1 am. Noble Lords may not have thought that the Court of Appeal did that very often. It is important for your Lordships to realise that some cases that I tried were extremely easy to try—one in particular involved a Miss B, who was obviously competent—but other cases were extraordinarily difficult. One case—the one that we did until 1 am—concerned somebody with a needle phobia who was expected to need a caesarean, and she objected because she could not bear the idea of a needle. At one in the morning, we took the view that she did not have the mental capacity to decide on her caesarean. She was hugely relieved and had the operation without any trouble. But that was not a unique case—the time was, but not the problem.
My Lords, I of course enormously respect the experience of the noble and learned Baroness and her ability to make these judgments. I am sorry that she had to sit until 1 am. But does she feel that those decisions would have been more or less complex and difficult if she had been judging them on the basis of ability?
I have not the remotest idea. It is such an important point that I would have to go away and reflect. I am not commenting on ability or capacity; the point I am making to the Committee is about the difficulty of this for a doctor, or several doctors—probably GPs. The Royal College of Psychiatrists, of which I am an honorary fellow, has said firmly that it wants nothing whatever to do with the panel or with this, so doctors who are not psychiatrists will decide, with other people, whether somebody has or does not have capacity. That is what is currently in the Bill.
I warn your Lordships that this can be difficult, particularly when it involves depression. I had a friend, a solicitor, who suffered from depression. She said that she used to fall into a black pit and try to crawl up the sides, which were slippery. It was clear to me that, when she was in that depression, she certainly did not have the ability to make serious decisions. So I warn your Lordships about the potential problems of assessing capacity.
Baroness Lawlor (Con)
My Lords, I support the amendment in the name of the noble Baroness, Lady Finlay, to substitute “ability” for “capacity” in Clause 1(1)(a). As Clause 3 explains—we have already spoken about this at length—capacity is to be understood as defined in the Mental Capacity Act 2005. But, in my view, capacity so defined is the wrong measure to use to discern whether someone is in a position to make a proper judgment about ending their own life.
The Mental Capacity Act sets a very low threshold for having mental capacity. The Act requires—it could hardly do otherwise—that the person concerned must be able to understand the information relevant to a decision, but it dictates that this requirement should be understood in the laxest way, because Section 3(2) states:
“A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means)”.
We have heard from the noble Baroness, Lady Finlay, about the problems of information, facts, evidence and understanding that she has encountered in her very distinguished specialism. In effect, then, someone who can grasp only a diluted, simplified version of the information needed for a decision is still thought to have capacity to take it.
In Section 3(3) the Act adds that, although the person concerned may be able to retain the information, as per Section 3(1)(b):
“The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision”.
The Act therefore allows that someone who cannot retain information in the normal sense of the word “retain”, which means that something is kept, in this case in the memory, none the less has capacity.
Although the Act makes the threshold for mental capacity as low as it can, arguably that is good for the purpose of the Act, because very strong reasons are required before we take an individual’s power of agency over important decisions about the conduct of their life, which is the result of declaring that they lack capacity. If there are any grounds, however slight, we should accept that they have capacity.
But, in the case of the Bill, this position is reversed. We are dealing here with a decision that, in its gravity and irrevocable nature, is completely unlike most—or all—of those important decisions that the Mental Capacity Act was designed to regulate. Where the decision is to end one’s own life, what matters above all is that the agent is able to understand its meaning and consequences. It is not enough in this case that the information relevant to the decision is grasped in a simplified or pre-conceptual form, as the Mental Capacity Act definition would allow, nor that the information is retained only for a moment, then to be forgotten, as again is allowed by the Mental Capacity Act definition. The threshold for being allowed to take the decision must be much higher. Even though making it higher would take away the power of agency from more people than a lower threshold would, it is wholly justified when, as here, it concerns a decision that, if made, will entirely and irrevocably remove an individual’s power of agency.
I agree that “ability” lacks the precise legal definition— I am very grateful to the noble and learned Baroness, who was very candid about what that could mean—that “capacity” has. It is better to have an imprecise phrasing that points in the right direction than one that points the wrong way. Moreover, the phrasing of the amended clause indicates how we should understand ability. It is an ability to make the brave and difficult decision to end one’s own life. Clearly, an ability commensurate with the gravity of that difficult and brave decision is an appropriate way. I support the aim, and, indeed, the wording, of the noble Baroness’s amendment, because of the gravity of the decision that is being taken.
It is very important that we understand where these reports come from. This one is issued by the Royal College of Psychiatrists, but it has not been subjected to scrutiny by the members. Although they have many good points, and we can look carefully at their recommendations and assess them properly, we need to make a decision ourselves.
I am very grateful to the noble Baroness for giving way. I have a practical question to ask. Do other doctors get training on what is meant by “capacity”?
I do not think I can add much more to what I have already said. We are debating the Bill. The House will adjourn fairly shortly, and I will have a discussion in the usual channels. There is no government time that can be made available for the Bill.
Is it not time that the Government look to give some government time to the Bill? As has already been said, this is one of the most important Bills ever to come before this House. For the Government not to give us government time, as the noble Baroness, Lady O’Loan, has just said, is unfair to the Bill.
All I can do is repeat myself: this is a Private Member’s Bill, and the Government do not have any government time to give it at the moment.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Butler-Sloss
Main Page: Baroness Butler-Sloss (Crossbench - Life peer)Department Debates - View all Baroness Butler-Sloss's debates with the Department of Health and Social Care
(2 weeks, 5 days ago)
Lords ChamberMy Lords, I support the amendments to Clause 1 in this group. I speak in particular to Amendment 48 in my name. This seeks to strengthen the safeguards against someone being coerced into an assisted death by removing the words “by any other person” from Clause 1(2)(b). This would extend the notion of coercion by recognising that coercion or pressure can come from a multitude of places—an institution, a circumstance or another individual. I am sure there is agreement across your Lordships’ Committee that nobody should feel obliged to opt for an assisted death. This amendment aims to strengthen and clarify the eligibility criteria in the Bill in recognition that they are perhaps its most important safeguard.
I have deep concerns, as many of us do, about how we protect vulnerable people from unnecessary, unwanted death. I am especially anxious that we should be aware of the risk of coercion in all its forms, which is an issue that I raised during Second Reading. This includes somebody who feels coerced through a lack of real choice.
The National Audit Office’s recent report into the state of the palliative and end-of-life care sector is stark. As we know, funding is stretched and provision is disparate. As things stand, there is a lack of real choice for many people about the end of life. The knowledge of this could easily be internalised by people, leaving terminally ill patients in certain regions or who are part of particularly vulnerable marginalised populations feeling that they have no choice but assisted dying, whether or not another person is explicitly pushing this.
Therefore, my Amendment 48 seeks to ensure that such cases are not left out of the Bill’s definition of coercion. I ask my noble and learned friend Lord Falconer, in his summing up, to give consideration to this, so that it remains possible to detect and prevent any death that the person has not freely chosen.
My Lords, I do not like this Bill, but I am here, like many other Members of this House, to agree on amendments that will make this a better Bill, and I hope it will be effective.
When my father died, the family nanny, who had also been his housekeeper, needed somewhere to live, and my brothers and I paid for her to live in a very nice care home, where she was entirely happy, until I went to see her. On each occasion, she said to me, “I shouldn’t be alive. I ought to die. It is not right that you and your brothers are having to pay for me”. I have this direct knowledge. She was perfectly happy when I was not there and, of course, we continued to look after her until she died.
But the Bill, once it is passed, is absolutely certain to be enlarged in all sorts of ways, as happened with other Bills in other countries once they became law. There are various reasons why it would be a good thing to enlarge it. For example, it seems to me bitterly unfair that those with locked-in syndromes such as motor neurone disease would be extremely unlikely to benefit from the Bill in the last six months, because many—those I have known—have been unable to do anything themselves in the last six months. The word “encouragement” is absolutely crucial. It does not have to be coercion. It does not have to be abuse. It could be nice people listening to a loved one and realising that they are saying, “I ought to die”, and consequently saying, “Yes, why not?” That would be extremely unjust.
Lord Pannick (CB)
My Lords, there is a profound irony in this group of amendments, because the Bill introduces far greater protection for vulnerable patients than exists under current law. Terminally ill people are currently vulnerable to all sorts of pressures from family members and others who may have their own agendas in seeking to persuade the patient not to continue with their treatment, to die or just to give up on life. The Bill introduces in statutory form a whole range of new statutory protections that simply do not exist in the standard cases of vulnerable people being encouraged not to continue with their treatment.
We see that in Clause 1(2), which summarises what the Act provides in some detail. Steps are to be taken, and they are taken under the Bill, to establish that the person concerned
“has a clear, settled and informed wish to end their own life, and … has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person into making it”.
Those seem to me to be very strong and very appropriate protections. The idea that we should proscribe encouragement will inevitably lead to the family members and friends of the person concerned, the person in the terminally ill condition, being worried that, if they discuss this difficult, important subject with their loved one or friend, they will be vulnerable to all sorts of sanctions under the law. That, I would have thought, is the last thing that we want. The application of these principles—and they are the right principles in Clauses 1 and 2—will inevitably depend on the facts and the circumstances of the individual case, so I, for my part, do not see the need for any of these amendments.
I was talking to the debate on coercion, because there is no check on it for the existing way of ending one’s life early, which is to go to Dignitas. I was asking whether, if the Bill is changed in the way that, for example, the noble Lady, Lady Hollins, would like, she would then support it.
My Lords, before the noble Baroness sits down, there are two separate situations here, and I wonder whether she agrees. One is that there are many of us who do not like the Bill, but there is a real probability that the Bill will pass, and if it passes, we want it better than it is at the moment. Consequently, we are not wasting time.
I was not suggesting wasting time. I was asking whether, if these changes were agreed, people would then allow the Bill to proceed.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Butler-Sloss
Main Page: Baroness Butler-Sloss (Crossbench - Life peer)Department Debates - View all Baroness Butler-Sloss's debates with the Department of Health and Social Care
(5 days, 18 hours ago)
Lords ChamberMy Lords, I understand very much the points made by the noble Lord, Lord Winston, and the noble Baroness, Lady Fox. I come to this issue from a rather different position. I used to try a lot of cases, some of terminally ill young people, generally from the ages of 15 up to 25 or more. There were a number of cases of those with terminal illness, undoubtedly with capacity, who were also suffering from depression, not very surprisingly, or were confused as to what they really wanted. They came before me for all sorts of reasons unconnected with whether they should live or die from their perspective. What I was looking at was the medical evidence as to the sort of support that they ought to have.
Despite the neuroscience issue, which is important, and despite 18—or down to 16 under the present Government—being the age at which you are able to vote, I just raise whether you are looking at how much you care about the future of this country and what you care about for yourself. Do you want to die because you are going to die in the next few months? The doctors may be right or wrong about six months; we know that many diagnoses are inaccurate. This may be the most important decision of all to make: life or death? Consequently, I am concerned about the age of 18 from my own experience. Whether it should be 21 or 25 is arguable, but I am worried if it sticks at 18.
My Lords, I support the amendment from the noble Baroness, Lady Berger. It is reasonable to have these considerations about the different ways people think and feel at different times in their life. One of the big discussions we have more broadly about the Bill is about the cognitive capacities of old people, which are very important in their freedom of decision.
In a similar way, it is reasonable to talk about the cognitive capacities of very young people. In particular, one of the things that makes very young people different from older people is that they naturally have very little encounter with death; they are much less likely to have come across situations in which people die and people they know have died. They simply do not know what it involves. If it were banned throughout the world that anybody under the age of 25 would fight in a war, we would hardly have any wars. One reason why soldiers are prepared to fight in wars is that they do not understand death when they are very young. They are ready for anything.
There is often a very strong culture of suicide in young people, because it is a romantic idea. The poet Keats expressed it absolutely beautifully in his “Ode to a Nightingale” when he speaks about being
“half in love with easeful Death”,
and the joy of ceasing on the midnight with no pain. He knew of what he spoke, in a sense, because he was suffering from a terminal illness, and he died before he was 25.
As the noble Baroness, Lady Berger, and others have brought out, we need to think about the influences on young people who may go in that direction. If they suffer from a terminal illness, that becomes even more acute. Because of their lack of experience in these matters, they will be under greater pressure, quite possibly, to feel that suicide is the way out and is somehow a noble thing to do.
I remember, at school, there was a very brilliant boy who was 18 and wrote a very short poem that just said, “If I should die, think only this of me: ennui”. It was a very clever thing to write, and he subsequently committed suicide aged 19. I ask noble Lords to think about what it might be like in such a situation at such an age.
Baroness Lawlor (Con)
My Lords, I thank the noble and learned Lord for his intervention, for which I am very grateful. I point out first that I think that many noble Lords feel there is a very great difference between a decision to refuse treatment or withdraw treatment, which may or may not end one’s life, and to ask for something which will definitely end one’s life. That point is brought up by supporters of the Bill.
I will speak to my Amendment 5 and to the related Amendments 250, 258, 305 and 338.
I wonder whether the noble Baroness might think it wise for us all to find out, after the discussions with the noble Baronesses, Lady Cass and Lady Finlay, what the noble and learned Lord, Lord Falconer, is proposing to do before we discuss this any further.
Baroness Lawlor (Con)
I thank the noble and learned Baroness, but I have a few points to add to the discussion.
I am grateful for that clarification and we will come back to the noble and learned Lord’s comments on these issues afterwards.
If one reads Clause 1(1)(c), it not only says that the person has to be ordinarily resident but that they have to have been
“so resident for at least 12 months”.
Consequently, unless being in an embassy is still seen as being resident for the previous 12 months, the point that the noble Baroness made is entirely right.
I am most grateful for that intervention, because many people who work in the embassies abroad do not live in the embassy; they live in apartments, houses or whatever in its vicinity.
The wording of the Bill prompted my probing amendment, so I ask the noble and learned Lord, in the light of this, whether he is comfortable with the vagueness of the term “ordinarily” or whether he sees merit in reconsidering this wording carefully to clarify the residency requirement to avoid death tourism and ensure that others are not discriminated against. I beg to move.
My Lords, I agree with my noble friend Lord Pannick. The concept of residence is clearly understood. I recommend to the noble Lord, Lord Moylan, that he might need a criminal lawyer just in case he was prosecuted for doing something wrong. I would be very happy to act for him, of course.
I recommend that all of us who are considering this matter should have a good look, as I have, at the National Health Service ordinary residence tool, which was revised in March this year. It gives a very clear outline of all the possibilities and where they fall in the ordinary residence judgment. What concerns me about the example that the noble Lord, Lord Moylan, gave, which we will come to on another group, possibly even today, is that if somebody has been living in Spain and wants to come back to their former country of ordinary residence for an assisted dying, if this Bill becomes law, it will prove extremely difficult to detect where there has been undue influence, particularly within a family. It would be extraordinarily difficult to investigate that evidence, whether it was done by a court or by a panel. I would be opposed to it on those grounds.
I also entirely support, including the word “disastrous”, the points that the noble Lord, Lord Pannick, made. As he said, domicile is complex. You would end up in court dealing with the issue of domicile. It really is not a good idea.
Under Clause 1(1)(c), there are two requirements. One is “ordinarily resident”. I say to the noble Lord, Lord Moylan, that if I was trying the case I would have no problem at all. If it says “ordinarily resident”, that is what I would accept, so long as there was the evidence to support it. I do not think we need to be caught up in the Human Rights Act in dealing with such an issue. What worry me are the two requirements,
“ordinarily resident … and has been so resident for at least 12 months ending with the date of the first declaration”.
That seems to be a complete bar for someone who is in an embassy. It is very difficult if they are not ordinarily resident. It looks as though the noble Lord, Lord Carlile, does not agree.
I hesitate to interrupt my noble and learned friend, whom I regard as being of almost biblical correctness in almost everything. If she were to take a look at the NHS tool that I referred to, which sets out all the requirements to prove ordinary residence, she would find that people who work in embassies, for example, are excluded because they are given fixed-term contracts for a certain time, even though that contract may be extended at some time. It also specifically refers to people who work for charities and who go to work abroad for a temporary period fixed by a contract. I do not think the issue that she has raised is very worrying.
I am delighted to hear it in relation to embassies and charities, but the other example given was the person living in Spain who wants to come back to die here. It seems to me that needing to be resident in this country for the last 12 months would not allow that person to do so. The noble and learned Lord might just look again at that particular element of residence.
My Lords, I hesitate to interrupt this fascinating debate between our lawyers. I have no legal experience, but I have investigated the notion of domiciliary status at some length for different reasons. I absolutely agree with anyone who has tried to work their way through the 93 pages of conditionalities and various different criteria.
I come back to the central point in the excellent contribution by the noble Lord, Lord Lansley, about the need for consistency with the NHS and the implications of not being consistent. The terminology is not just about domiciliary status. What is the notion of permanence? We could have an equally long and problematic debate over that other element of the terminology. I completely respect that this is a probing amendment, but just as we had the beginnings of a debate on mental capacity and the necessity for consistency and trusting that what we already know works, because we see it every day in practice, so the notion of ordinary residence should simply, as far as I am concerned, end the conversation. I think there is a welcome consensus around the Committee that this is the only definition that is going to be practicable, workable, known and acceptable. I hope we can move on with the debate in that context.