Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Grey-Thompson
Main Page: Baroness Grey-Thompson (Crossbench - Life peer)Department Debates - View all Baroness Grey-Thompson's debates with the Department of Health and Social Care
(1 day, 13 hours ago)
Lords ChamberMy Lords, I am in favour of the amendments from my noble friend Lady Coffey. This has been a fascinating debate about the issues that we have with the devolution settlements across our United Kingdom. It is not only about the issues across the English-Welsh border, which have been so ably demonstrated and described by my noble friend Lord Harper, who has experience in this matter from the other place, but we have other strange dynamics going on in this country on the English border over into Scotland, where things are very different. There are other differences between England and Northern Ireland. We are not proposing to usurp the settlement with Scotland or to usurp the settlement with Northern Ireland.
I am quite interested to hear, at the appropriate time, whether the noble and learned Lord, Lord Falconer, will declare whether he is no longer quite so keen on the old devolution settlements that I can but assume he was part of during the Government that he served in, in that it is not quite as convenient now in this Bill to do the things required by those devolution settlements.
I was interested to hear the comments from the noble Lord, Lord Weir, because the Northern Ireland arrangement has a further dynamic, between Northern Ireland and the Republic of Ireland, where there is, again, a swapping over and a commonality of health provision, and it is quite commonplace that people come and go.
The matter of abortion was also raised. That has had a different dynamic across our United Kingdom over many years. My voting record in the House of Commons will show that I took no part in the rather heated debate on abortion that happened some years ago. I abstained because I appreciated that the devolution settlement was a matter for the Northern Ireland Assembly to come to its own conclusions on.
We have to ask ourselves what this Bill is. Is it a criminal justice Bill? We have 42 Henry VIII powers, exercisable by Ministers, so the Bill before us is not actually the Bill that will affect people’s lives; that will be written later because this Bill has so many of those Henry VIII powers in it. Many of those powers, as I described at Second Reading, should not really be there. We should not be having Henry VIII powers to create criminal matters under statutory instruments and delegated legislation; that is just not the way we do things.
So is this a criminal justice Bill? I do not think it is, because it has now morphed very much into a health Bill. It seeks to amend the NHS Act. I think it is the intent of many of the Bill’s supporters that it is the NHS that does these things: advise, provide the medical staff and do the deed. I do not know which chemical might be used. It may be barbiturates in England; it might be heaven knows what in Scotland. These are serious matters.
Is this a medical Bill? I believe that it is. Because it has morphed increasingly into a medical Bill, whether or not we agree with the devolution settlements, we have to respect them. As my noble friend Lord Harper highlighted very clearly, this is the danger of a Private Member’s Bill that is so interwoven with and entrenched in the complications of a devolution settlement. Whether you are for or against this Bill, or whatever, these are complex matters. These are matters of a different potential life or death, depending on which border you are close to in this United Kingdom. This is a matter of health in Wales.
Looking back to Covid, I know that it is a period we all rather like to forget, unpleasant as it was. At that time, I and my noble friend Lord Harper—I am sorry to keep mentioning him—were somewhat active in the space. Do noble Lords remember? These were matters of life and death; I mean, Covid was deemed to be. I was not quite so keen on the measures and voted against them all, but they were deemed to be measures of life and death; that is why they were so draconian.
I remember very clearly that I came up with what I called the Wilkinson conundrum. It is not a good conundrum now, because Wilkinson has subsequently gone into liquidation, but I made the point that because Wilkinson sold everything—fresh fruit and vegetables, tins of beans, and pots and pans—it was allowed to open. The lunacy was that the independent trader next door who sold only pots and pans was not allowed to open. We did that for whatever reason—it was deemed to be a matter of life and death—but Wales did something entirely different. In Wales, Wilkinson had to hide the pots and pans; one could buy beans and everything else, but a cover had to be put over the pots and pans. In matters of life and death, we allowed Wales to have its way.
This is most seriously a matter of life and death. We have a devolution settlement, and it has to be respected.
My Lords, I declare my interests in this debate: I chair Sport Wales, which is an arm’s-length body of the Welsh Government; I am the president of the LGA; and I am a director of Living and Dying Well. I also spoke recently at a fundraiser event for a hospice in Wales.
A fundamental part of why we are here is to debate legislation, including looking at how this Bill might impact various parts of the UK—most specifically, England and Wales. I am concerned that we could end up with vastly different systems in England and Wales. Generally, there is a lack of understanding on devolution. In sport, I seem to spend quite a lot of time in meetings asking, “What about devolution?”, and we have to be careful about what we do in Westminster and what should be a matter for Wales when the health service is devolved.
I am very interested in that, because the response that I have had from the Minister is that nobody should be working on this beyond the Bill team, so nobody should be working on implementation. What the noble Baroness says is very interesting.
I thank the noble Baroness. At the Lady Mayor’s parade, a member of the public introduced himself and told me that this is what he was doing. We agreed to disagree on the outcome of the Bill. Slightly patronisingly, he followed this up by saying how wonderful he thought I was and to keep going.
I did not mean to make a point that was amusing to the Chamber, as this is far from amusing, but these are the details that we need to understand. Is there far more going on behind the scenes? Is the presumption that very few amendments will be accepted, as happened in another place, or are the supporters of this Bill really open to making it better? I have tabled the second-highest number of amendments; my competitive edge fails in this example, as my noble friend Lady Finlay is about 30 amendments ahead of me. My amendments are to improve the Bill. Many are slight drafting changes, changes of words, which are to improve this Bill. That is our role. That is what we must remember. We have to improve this Bill. We have to make it workable.
Coming back to the point of this grouping, we have to make it work for England and Wales and we have to remember, as people who work in Westminster, that we have a responsibility to the people of Wales and should not step into areas that are not for us to step into.
My Lords, this is the first debate in Committee on this important Bill so I hope that the Committee will allow me to take a minute or two to set out the approach of the Official Opposition. As my noble friend Lord Kamall and I said at Second Reading, the Official Opposition have no collective view on this Bill. Although each Member of the Opposition Front Bench will have their own view on the Bill, we will support noble Lords across the House in their scrutiny of the Bill. We will also table a small number of additional amendments where we feel that parts of the Bill need probing further. We will not seek to delay the passage of the Bill, nor will we seek to hold up progress in Committee. Instead, we will seriously engage in detailed scrutiny of the Bill so that we can collectively deliver the best possible piece of legislation.
In that regard, I respectfully pay tribute to the noble and learned Lord, Lord Falconer of Thoroton, for demonstrating his openness to improving the Bill already by tabling amendments that we hope to get to today and which reflect concerns that have been raised by noble Lords. I speak for all my colleagues on the Opposition Front Bench when I say that I look forward to working with him to ensure that we send a better Bill back to the other place.
The amendments in this group relate to the territorial extent of the Bill. My noble friend Lady Coffey is seeking to remove references to Wales in the Bill so that it would apply only to England. While I am not entirely persuaded that making this an England-only Bill is necessary per se, these amendments raise important questions about devolution. The core question for the noble and learned Lord, Lord Falconer of Thoroton, is why the Bill does not apply to the whole of the United Kingdom on the one hand or only to England on the other.
At the heart of this is, as the noble and learned Lord, Lord Thomas of Cwmgiedd, said—although various Acts of Parliament may put us to sleep, a speech by the noble and learned Lord never does; I was listening very carefully—that these amendments speak to the devolution settlement that we work with and the inconsistencies and confusions of that settlement. The noble and learned Lord used the word “complexity”. It is extremely complex. In this area, we have the problem that criminal law is not devolved to Wales whereas health is devolved. To pick up the point made by the noble and learned Lord, with which I respectfully agree, declaring the appropriate interest, Wales should not be regarded as inferior to Scotland. That is a point of general application.
The Scottish Parliament, as noble Lords know, is currently considering its own legislation on this topic. I hope that noble Lords have picked up that the Scottish Bill is significantly different in key ways—most markedly in the definition of terminal illness. In Scotland, it lacks the “six months to live” test which, whatever view we take, is at the heart of the Bill before us. The definition of terminal illness in the Scottish Bill is:
“For the purposes of this Act, a person is terminally ill if they have an advanced and progressive disease, illness or condition from which they are unable to recover and that can reasonably be expected to cause their premature death”.
I am not quite sure about “premature” in that context in all cases, but that is what the text says.
Leaving aside the point that those resident in one part of the United Kingdom will therefore have different rights to assistance under the law from those in another region of the United Kingdom should both Bills pass, I see the point that my noble friend Lady Coffey is making. If the people of Scotland may choose whether to have a law for terminally ill adults who wish to end their lives, why—I ask rhetorically, so to speak, looking forward to the response of the noble and learned Lord, Lord Falconer—should people in Wales not have the same choice? This is the key question that the noble and learned Lord has been presented with by this group of amendments.
I will certainly look into the matter that the noble Baroness raised and would be pleased to write to her. However, the first point I wanted to make here was about engagement with the Welsh Government. Of course, Ministers themselves have not met with the Welsh Government in relation to this Bill, as again would be expected, as it is not a government Bill. I know that the sponsors have met with the Welsh Government to discuss the policy intent and to negotiate which clauses require a legislative consent Motion.
The sponsors are also leading engagement with Scotland and Northern Ireland while—on the point made earlier by the noble Lord, Lord Harper, and others—UK government officials are providing technical support to support the sponsor and are engaging with Welsh government officials to discuss technical matters in relation to clauses that require a legislative consent Motion or those to which Wales has requested that further changes are made. Officials have regular meetings; they can be as frequent as weekly, as was the case at some points over the last few months.
The noble Baroness mentioned that the role of Ministers is to ensure that the Bill is legally robust, effective and workable, but surely safety has to play some part in that as well.
I am sure it would be expected that safety is absolutely paramount. The point I am making—and I look forward to hearing from my noble and learned friend—is that our position in government here is not to deal with matters of policy. As I have said, we are restricted to areas to which any Government would be restricted.
We will absolutely work with the Welsh Government, NHS England and the NHS in Wales to understand the impact of any changes to the law and the provision of healthcare services in Wales, during the coming stages of the Bill.
My Lords, I want to add a correction for the noble Lord, Lord Winston. The Royal College of Psychiatrists voted on the principle and it was a 50:50 split. The issue of this Bill is different. The college has taken the view, after a great deal of consultation, that it does not support the Bill.
My Lords, may I clarify that? I have just checked the information. My noble friend is correct in what she says, in that the support was 50:50, but the majority of respondents—64%—opposed expanding eligibility and 65% of them were not confident that consent could act as an adequate safeguard against unfree choices, such as those resulting from coercion or psychopathology.
My Lords, it is clear, I think, that we all want the same thing here. Whatever one’s feelings about it generally, if this Bill is passed, we want to make sure that the person is in the right position—I do not use either “capability” or “ability”—to make a decision on whether to take part in assisted dying.
We all want the same thing, so what we have to decide is whether we believe that the existing framework, the Mental Capacity Act, can work here. I have heard a body of evidence that says it can. I respect in particular the evidence from Sir Chris Whitty, who, as Chief Medical Officer, is probably our highest adviser in the land in the medical space. He believes that it can do it. I also respect the opinions of the psychiatrists who have written in and said that, in their professional opinion, they are able to use the Mental Capacity Act to assess whether a person is in the right position to take part in assisted dying. So, as the noble Baroness, Lady Andrews, and others have made out, we have a body of evidence and 20 years of experience showing that the Mental Capacity Act can work and is already acting in very similar situations.
One can argue whether these two things are exactly the same, but they are pretty similar: both involve life-and-death situations, such as “do not resuscitate” orders, people deciding not to eat or drink any more, and people with motor neurone disease asking to come off ventilators. These are all very similar situations that, today, are decided under the Mental Capacity Act. So we have a system that is being used and which our best adviser says works, and we are setting an unknown definition against that. If we set about asking, “What do we mean by ‘ability’?”, we would probably all come up with very different answers. This would be untried and tested; it may take years, if not decades, to find something, against something that exists today. It would be very confusing: when do you use the Mental Capacity Act and when do you use this new definition?
Again, we all want the same thing: for the person to be in the right position. Our highest expert in the land says that the Mental Capacity Act can do it, and a number of psychiatrists are also saying that they can make the assessment under it. To my mind, that is what we should be considering.
Lord Goodman of Wycombe (Con)
My Lords, in debating ability and capacity, I will speak briefly as a member not only of the Delegated Powers Committee that considered the Bill but of the Select Committee that also did so. Noble Lords have heard differing views from members of the Select Committee about the various goings on that took place there, but I am sure we can all agree that we heard some very fine evidence.
All I wish to do in intervening here is to quote what Professor Alex Ruck Keene, whom my noble friend Lady Berridge referred to earlier, said about capacity and the role of psychiatrists, as it is extremely relevant to the debate on this clause. He said:
“The point I am trying to make is that, if you simply say, ‘Apply the MCA. Apply the principle of the presumption of capacity. Support the person to have capacity to decide their own life’, I anticipate, if you asked very many psychiatrists, they would go, ‘How am I supposed to think about that?’ That is for a very specific reason. For psychiatrists, most of the time, their job is to secure life. Their job is suicide prevention”.
He concluded:
“We need to know—and one of my real concerns is—how this Bill sits in the wider landscape of the law. I need to be able to tell, because I am going to be one of the people writing the books here and giving the training. I need to be able to say, with absolute crystal clarity, to a psychiatrist, ‘This is the point where you are not in the suicide prevention zone, and if you do not do all steps necessary to try to secure this person’s life, you could be prosecuted or you could be charged in various different ways or be civilly liable’. I need to be able to say, with crystal clarity, ‘You’re no longer in that zone; you’re now in the zone of the Terminally Ill Adults (End of Life) Bill’”.
I quote the professor simply to draw to the Committee’s attention once again the complexity of the issues before us. Although “ability” may be flawed and legally powerless, as the noble Lord, Lord Pannick, suggested, “capacity” is deeply problematic in the context of the Bill.
My Lords, there is probably one thing we can all agree on today: everyone’s frustration with the process of evidence giving. I was hugely frustrated when the committee in another place was looking for evidence but deaf and disabled people’s organisations were not able to give evidence, despite making up 25% of the population.
I hope that I speak on behalf of the whole House when I say how sad it is that my noble friend Lady Campbell of Surbiton is not able to be in her place. She has experience in politics and in the House of Lords of extensively debating capacity, on what became the Domestic Abuse Act and in previous debates on assisted dying. I would urge anyone who has time to look at her contributions on capacity.
My noble friend is an individual who, I am afraid to say, in her 66 years, has been deemed terminal more times, probably, than most of us in the Chamber combined. She has had her capacity challenged probably an equal number of times. I remember a few years ago, when I had not long been in your Lordships’ House, when my noble friend was in hospital and several of us had phone calls to say that we needed to get to the hospital right away because they were challenging her capacity. Her husband was told that she was not able to make decisions on her care because she was delusional. Why was she delusional? Because she had told the doctors that she was a Member of the House of Lords. The response was, “She can’t be in the House of Lords—she’s disabled”. I cannot remember whether her husband got away with taking her pass in; there was talk about having to take her seal in to prove that she was in the House of Lords. But this highlights some of the issues with mental capacity assessment.
I have had personal experience of it. When my father was ill and the doctors found out I had lasting power of attorney, I was taken to one side to argue that he should have a different set of treatment. He had the capacity and ability to decide what he wanted. In this case, he had to have his leg amputated, and he was told that, as a wheelchair user, he would have no quality of life—they said that to me. If there was one thing I could do for my father, I could get him a wheelchair.
More recently, I have had an experience with my husband. At the end of 2020, he had a blood clot on the brain stem—he had a stroke, and he was blue-lighted to hospital. It was a dreadful experience. My daughter was in her first year at university and had to be called home. We did not think he was going to make it, and we were not allowed into the hospital. I was frequently told by the medics that he had no capacity to make a decision on his treatment. My husband said, “Look at the notes”; I said, “Look at the notes”. What they were arguing over in terms of his capacity was his ability to walk. Looking at the notes was really important, because his lack of ability to walk was nothing to do with the fact that he had a stroke; it was due to the fact that he had had a spinal cord injury in 1984 when he crashed his pedal bike into the back of a double-decker bus.
I understand what the Chamber is saying. I have personal experience where I think the Mental Capacity Act has been used in the wrong way. We have to find a way of making it work so we are able to take care of capacity. Like others, I am not entirely sure that “ability” is the right word. I understand what I mean by “ability”; I have amendments later on around the ability to understand decisions. I have one on British Sign Language because of the case of a deaf man who was told by a nurse who could only fingerspell that he had HIV when he did not—he thought for two days that he had HIV—and I have another amendment around people with learning disabilities. So maybe “ability” is not the right word.
My noble friend Lord Pannick talks about legal definitions, and I also have a number of very minor amendments which look at a better legal definition of disabled people. Perhaps we can take this away, work on it and do something. As the noble and learned Baroness, Lady Scotland, said, we have to make it work. We have to look at the Mental Capacity Act through the prism of the Bill, not in terms of what it was designed to do.
The importance of the amendment in the name of the noble Baroness, Lady Finlay of Llandaff, is that, as has already been well described, there are genuine concerns about the appropriateness of the Mental Capacity Act 2005 as it stands. I think also that there has been more interest at this point because, so far, it has not been deemed to be in scope to put an amendment down to amend the Mental Capacity Act 2005—although I noticed that my noble friend Lord Goodman managed to get something in, so I congratulate him on that. That is why it is taking more time to consider aspects of this. I hear a noise—I thought it might have been someone shouting “Order!”, but perhaps it was excitement elsewhere.
I am just conscious that it is without doubt that, in the consideration in the Commons, Professor Sir Chris Whitty—who used to be one of my Permanent Secretaries when I was at the Department of Health and Social Care—suggested that the Mental Capacity Act had a higher test for basically a life or death decision, and then of course changed that evidence. However, I accept that he said, in evidence given orally to the Select Committee in this House, that having something that people are used to using is important. So one of the things that we need to judge is recognising the role of the Royal College of Psychiatrists—admittedly, it is not the Chief Medical Officer—and take its words seriously.
I was somewhat shocked by the words of the noble Baroness, Lady Murphy. I do not know if she ever used the Mental Capacity Act in her time as a professional. I know she is experienced in this in terms of psychiatry, but I was pretty horrified by the words she just used in this Chamber about the witness.