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Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Andrews
Main Page: Baroness Andrews (Labour - Life peer)Department Debates - View all Baroness Andrews's debates with the Department of Health and Social Care
(5 months, 2 weeks ago)
Lords ChamberMy Lords, I am glad to be able to follow the noble Baroness, Lady Monckton. I declare my interests as a past president of the Royal College of Psychiatrists, and I have a parliamentary scholar, a psychiatry trainee who is appointed by the Royal College of Psychiatrists to work one day a week with me. I was a member of the post-legislative scrutiny committee on the Mental Capacity Act. I also founded and chair a visual literacy charity called Books Beyond Words, which is relevant in a way.
I was listening to the noble Baroness, Lady Lawlor, speak about communication. It reminded me that 18% of the adult population in this country are functionally illiterate. This is really important when we think about making decisions of such importance. I have an amendment later proposing a different framework for assessing capacity, and I will obviously talk about that then, but I want to reflect on how the charity Beyond Words creates really difficult stories in pictures, without any words, to try to help people who struggle with words to understand and make decisions about such things as the care and the treatment that they might require. We currently have about 80 stories, all about the whole story that people can discuss with their peers, their healthcare professionals and their families, to help them to understand an issue, so that they will not be left out but will truly understand. It is very easy to think that somebody understands when you have explained something in words, in simple words, and that the person is compliant with it, but when you explain in pictures and enable the person to say what they have read in their own words, then you get an idea of whether they have understood.
I have been trying to think about how I would be able to create a story in pictures to explain this Bill. It would be several stories. It would take an awfully long time and an awful lot of work to be able to do it. I just wanted to respond to what the noble Baroness, Lady Lawlor, said; I thought it was very important.
My Lords, at the heart of this debate is the question of safety. It is very impressive to hear all the experience around the House and I know that people shared my experience when we took the Mental Capacity Act through the House in 2005. That Act had been years in the making. It had most profound and serious consideration in this House and, most unusually, it then had post-legislative scrutiny, where we went into every aspect of the Act. The noble Baroness, Lady Browning, is quite right; there were many concerns raised about the practice and the absence of proper training, but no one, to my knowledge, challenged the definition of “mental capacity”, recognising the huge complexity of the term, the different circumstances in which it is implemented and people’s responses to it.
The noble Lord, Lord Pannick, said that we have a framework. Safety, I think, relies on and is expressed in the 20 years of practice in the way the Mental Capacity Act has been implemented and has benefitted so many. The assumption that there is mental capacity was in itself a huge and very important statement of a positive right in the law. The Bill before us is another statement of a positive right in the law, where there has not been one, and where so many people are desperate for us to find a route through this urgently.
We have the experience of that Act, the experience and expertise that this House put into reviewing that Act and confirming it with the recommended improvements, and the way the Act is understood—as my noble friend has said, not least by Chris Whitty—as well as its unknown interpretations. We have just heard about the complexity of defining “ability”. We already know of the huge, unframed and unknown complexity of creating another concept in law in the context of a Bill which, itself, has to be so carefully understood, implemented and communicated. We have to stick to what we know, even though it is still a work in progress, because it can still be improved. I hope it will be improved, in the course of this Bill. But it will be immensely dangerous, unless I hear a completely conclusive explanation as to why “ability” is better, if we were to depart from “capacity”.
My Lords, under the Mental Capacity Act, the decision is not made by one individual; the Mental Capacity Act provides for decision-making, which includes the experiences of families et cetera. It is a profound process. This is not a profound process; it provides for a doctor to make a decision about whether a person has capacity and a second doctor to sign it off. It is not the same thing at all.
I attended a meeting, as did the noble and learned Lord, Lord Falconer, during which a doctor told a story about a patient who had signed up for assisted suicide. When the time came, he took a sip of the medicine and said, “I’m not drinking this”—upon which his family told him, “You decided you would die this day; you must do it”. He would not drink it. It took him seven days to die.
The noble Baroness is quite right, and it is a very important part of mental capacity decisions that the families are involved, supportive and completely understand the implications of what it means to have either incomplete capacity or capacity that varies from time to time. There is no reason— I will leave my noble and learned friend Lord Falconer to answer this point—why this should not be a better Bill, and maybe it can be better if we address these particular questions.
Lord Shinkwin (Con)
My Lords, I thank the noble Baroness, Lady Finlay of Llandaff, for her amazing dedication to her patients. That is beyond question. I hope we are united as a House in paying due respect to that fact and also to the fact that her professional experience is a tremendous asset to this House.
The noble Baroness, Lady Finlay, spoke of her professional experience, and I will speak very briefly of my lived experience on the other side of the table—or the bedside—as a patient. She mentioned Dame Cicely Saunders and the reference to total pain. I simply say that I have been there. My disability has taken me there far more times than I would like to remember. It is awful. The bottom falls out of your world, and your capacity to think clearly, rationally and normally evaporates. So I simply say that it is crucial that patients have the ability to choose: the choice between assisted death and specialist palliative care—a choice that they do not currently have.
I simply finish on this point. Other noble Lords have mentioned the Royal College of Psychiatrists. I ask the Committee to take note of the fact that the Royal College of Psychiatrists states that applying the Mental Capacity Act to the decision to end one’s life is an entirely novel test—in “uncharted territory”, with “no experience or precedent”.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Andrews
Main Page: Baroness Andrews (Labour - Life peer)Department Debates - View all Baroness Andrews's debates with the Department of Health and Social Care
(4 months, 3 weeks ago)
Lords ChamberI 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.
Does the noble Baroness accept that ordinary residence does not end the debate because the Bill goes on to impose an additional qualification about having lived in this country for 12 months prior to the date of signing the first declaration? If it were just ordinary residence, legally no issues would arise—there might be other issues—but we also have a 12-month requirement, which appears to me to be arbitrary and risky.
The noble Lord is right, and there are specific instances. The noble Baroness raised one in relation to the Crown dependencies, where these definitions will have to be tested in some way. But the purpose of the Bill is to ensure that people living in this country have a right to the security that they will be treated within the NHS and that the normal rules and behaviours of the NHS will apply to the conduct of this Bill as they do to everything.
My Lords, my amendments would remove the 12 months, because that would enable greater alignment with practice in the NHS. I make a plea to noble Lords that we might hear from those who have tabled amendments so that we complete the group more quickly. I think it is a discourtesy to those who have tabled amendments not to hear their explanation for them.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Andrews
Main Page: Baroness Andrews (Labour - Life peer)Department Debates - View all Baroness Andrews's debates with the Department of Health and Social Care
(3 months ago)
Lords ChamberI have two points to make on that intervention from the noble Baroness. First, on several occasions the noble and learned Lord has made reference to quite a significant number of officials that he has had working with him, helping him draft clauses and so forth. If the argument is that that is still not enough resource, that rather supports my contention—which I have made from the beginning—that the extent and nature of this legislation makes it absolutely not suitable for a Private Member’s Bill, and it should have been a government Bill. As I said, the noble and learned Lord has had extensive support from not just one but a number of government departments in helping him draft it.
My second and final point is on the issues that have arisen so far in Committee, particularly the issues that have arisen on Clause 1, which I think is why it is relevant to bring it up on the Clause 1 stand part debate. The noble and learned Lord referenced them in his letter, but he has not yet been in a position to set out what his amendments are going to be. He said that he will make them available as soon as he possibly can. That is good, and I welcome that, but, until we see them, we are not in a position to know whether further amendments need to be tabled for later in Committee or on Report. I finish by saying that I agree with the noble Lord, Lord Rooker. The extent to which we can now make progress is going to be largely governed by the extent to which the noble and learned Lord the sponsor of the Bill engages with the very fair criticisms that have been made across the Committee. We will listen carefully to what he says in response to this debate and in subsequent groups.
My Lords, I think it is right, as my noble friend Lord Rooker said, that this clause stand part debate is an opportunity for a reset and a rethink about how we are approaching the Bill and the way we are prioritising the arguments. Where I slightly take issue with my noble friend is that I do not think it is helpful to apportion blame. We are where we are with this Bill now, and we are all under the clear impression and instruction that, if the Committee wants to change the Bill, whether those who oppose it or those who support it, we have to get it to Report so that we can do that and then send it back to the Commons improved and amended.
On the question of delegation, I worked with my noble friend Lord Blencathra—I will call him that—on the reports on delegated legislation, and they were extremely important. What we have discovered in this Bill, as the amendments have been put forward, is that there is a difficult balance to be achieved between what goes into the Bill on the principle and the design—our task in this House is to make every Bill workable—and what has been left to delegation. As a result of the nature of the Bill, the behavioural issues that are raised by it, and the extraordinary personal and exceptional circumstances when we are dealing with people in the last months of their life—which we should never lose sight of, no matter what we are debating and how technical and process-driven it is—we have to think about the balance between what is workable because it is in the Bill and will stand in law and what has to be left to delegation going forward and therefore can be amended as circumstances change. That is the situation the Australians find themselves in. We have a lot to learn, as we have already learned, from Australian medics who have told us how they are managing the Bill and what an extraordinary benefit it has been. That is on the public record.
All I would say, before my noble friend Lord Blencathra possibly opposes me, although I hope not, is that this is an opportunity to look at the amendments that are coming forward and the priorities we are attaching to them and whether we can triage them in some way. My noble friend Lord Rooker is right that a lot of these early amendments can fall away, because we have addressed the principle. Can we focus on what it will now take to agree to improve the Bill, so that we can have shared trust across the Committee that this is about improving the Bill and not delaying it to the point that it will never become law?
My Lords, I have a point related to the point made by the noble Lord, Lord Harper, about impact assessments. Noble Lords will be aware that I am a former chair of the Equality and Human Rights Commission. I gave evidence on this Bill when it was being examined in the other place. Once it was introduced in your Lordships’ House, I recused myself from the EHRC’s involvement on the Bill, as I anticipated participating on the basis of being a Member of this House. That is the background, should anyone detect any conflict of interest on my part. A senior EHRC commissioner, Alasdair Henderson, who is a barrister, has since represented the EHRC on this Bill.
On 22 January, nearly 60 Members, including me, wrote to the Minister calling on the Government to update their equality impact assessment. This was to pick up the argument from the EHRC—which was put nearly three months ago, so the Government have had a substantial amount of time to think about it—that the current EIA contains several gaps and focuses primarily on access to an assisted death rather than on safeguarding risks and the potential for coercion. That letter has been circulated to the whole House. Yesterday, I received a reply from the Minister declining the request. Parliament will receive an updated impact assessment and equality impact assessment only
“should the Bill receive Royal Assent”,
and
“once detailed implementation work has been completed”.
In other words, the Committee is being told that it must legislate blind.
Baroness Andrews
Main Page: Baroness Andrews (Labour - Life peer)(1 month ago)
Lords ChamberNoble Lords are repeatedly intervening on the different points.
As for the numbers, the estimates, based on the evidence from other countries, suggest that the estimates in the impact assessment are very low, and that the demand for assisted suicide would be much higher, so it would come into the purview of a large number of clinicians; hence the need for specialisation.
My Lords, with some diffidence, I first put on the record that the Bill is abundantly clear that it is an opt-in system. Clause 31, “No obligation to provide assistance etc”, says:
“No person is under any duty to participate in the provision of assistance in accordance with this Act … No registered medical practitioner is under any duty to become … the coordinating doctor … or … the independent doctor”—
I will not read out the whole clause. I do not understand why it has been described by noble Lords in the way that the noble Baroness described, about not being able to opt out.
On the point of the register, we have heard over 13 days how important it is to listen to and consult medical practitioners at every stage of the Bill. The proposition in Amendment 189 is that the register should be put in the Bill. It is a privilege to listen to the expertise of our noble friend—as I call her—the noble Baroness, Lady Gerada, who has expressed some very profound and intimate reservations. But surely there will be provision in due course for the discussion of how to register people who are willing to opt in, and to do that with a full consultation of all the medical professions so that the concerns of the noble Lord, Lord Carlile, can be addressed. Surely, as with so much of the debate we are having, this is a matter of implementation. Let us get to the point where we can make a decision in principle, but let us make sure that in implementing it we have it right. That must be done, I think, with the full consultation of all the medical professionals.
Baroness Cass (CB)
My Lords, I will speak to my Amendment 383. I have so far limited my speeches on the Bill to a maximum of two to three minutes but on this one occasion I would like to take more time, because this may be the only opportunity I have to discuss how we can integrate some of the approaches that have been put forward; I refer to my noble friend Lady Hollins’s amendments on multiprofessional assessment up front and her Clause 5 stand part notice, and the amendments in the name of the noble Baroness, Lady Finlay, on parallel care between assisted dying and the continuing care process. I believe that what I have to say would vastly simplify things.
My amendment focuses on what professionals who are opted in to work in an assisted dying service would be expected to do, and how it differs from what is expected of those who are not opted in. Specifically, I will talk about two individuals with completely different roles: a professional who is part of the treating team and so is not opted in, and a professional who is opted in as part of the assisted dying service. I ask your Lordships just to suspend belief and bear with me while I explain.
I believe we are all agreed on a couple of points: first, that palliative care provision is inadequate; and, secondly, that services are often fragmented, with no one professional supporting someone at end of life and helping them access all the help that they need.
Let us walk through the patient journey, which I do not believe we have done in this House so far, and start with the person who has just been given—rightly or wrongly—a six-month prognosis. There are many things they may wish to discuss and seek help with: nursing care, access to financial support, pain management or just someone to explain again what the consultant said about their terminal illness. If they are lucky, they will have an excellent general practice team which can help with all these things. But, sadly, despite the wonderful primary care described by my noble friend Lady Gerada, many do not have such a practice. A friend’s husband died recently without being able to secure a single visit from anyone in his GP practice in the last nine months of his life.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Andrews
Main Page: Baroness Andrews (Labour - Life peer)Department Debates - View all Baroness Andrews's debates with the Department of Health and Social Care
(1 week, 1 day ago)
Lords ChamberI accept that that is the argument made by the noble and learned Lord. However, the argument I am trying to make here in a limited time is about public opinion and its effect and how we should regard it. When the noble Lord, Lord Barber, said that we have a privilege here, he was right, but I think that he was criticising the privilege in the wrong way. We must exercise that privilege because, unlike most people in this country, we have been able to consider the Bill at great length. We owe it to those people to consider it seriously and to consider all its elements and effects.
I can just testify for myself—because I am not an expert on the subject—but I have learned a tremendous amount in these discussions. I understood the broad arguments of principle before these discussions, but I have just re-read the Explanatory Notes that the noble and learned Lord and others issued about the Bill when it began. The three words “National Health Service” hardly appear in them. This was the big revelation to me and, I think, to many people. It is a matter not just of what you deeply believe about this very important issue—choice versus wider sanctity of life and so on—but of what will happen to the most important public service in this country and all the ramifications of that.
It is quite wrong to speak of a small minority of people who have been constantly agitating within the House. I do not know who those people are, but I know that many noble Lords on both sides, certainly on the side that is critical of the Bill, are very learned people on the subject of the effects on the National Health Service—for example, the noble Lord, Lord Stevens, and the noble Baronesses, Lady Cass and Lady Hollins. It is very important that they be heard and understood.
I sometimes think the Bill would be clearer if it were entitled the Terminally Ill Adults National Health Service (Assisted Suicide) Bill, because it is not just about assisted suicide. It is about how it would be carried out. It would be carried out by the National Health Service in almost all cases, so we need to debate its costs, its professional conflicts and all the difficult questions that arise. We have been doing that.
I come back, therefore, in justification of what we have all, on both sides, been trying to do. This is described accurately as a conscience Bill. If you have a conscience about something, you must be confident that the result will be safe. If it is not, how could you possibly not object to it? How could you just say, “Oh, well, there we are”? I do not think you can. In his opening remarks, the noble and learned Lord, Lord Falconer, said that the Bill has not failed on its merits, and I agree with him. It has failed on its demerits, and it is those that many of us cannot in conscience support.
My Lords, this is a very difficult day for this House. It is a profound day, and that has been reflected in extraordinary speeches, but it is a devastating day for people who invested hope that this House would follow the democratic lead of the other place and improve and vote for this Bill.
I am grateful to follow the noble Lord, Lord Moore of Etchingham, because there is one thing on which I want to take issue with him. On 27 March, he said there was “a big moral gulf” in this House between the two sides. I could not disagree more. We disagree on many aspects of the Bill—for example, I disagree with my dear friend, the noble Lord, Lord Deben, that it should have been a government Bill; I think there would have been an outcry if it had been a government Bill—but we are not divided on morality. We find different ways to approach grace. I am particularly glad that we have the most reverend Primate with us today and have listened to her words of reconciliation, because that is what this House has always been about.
Noble Lords will forgive me for a bit of history, but I was the responding Minister on the first Bill on assisted dying in this House in 2005. I remember very well what the noble Lord, Lord Baker, said—several people who are still in this House were there. It was the first time we had ever debated it. What marked that debate in 2005 was a generosity of spirit and a gentleness of approach that took every single view of this House into respectful consideration. That was true of the two other Bills we had in 2014 and 2016. We have never had a debate in this House that has been contested, where views have been challenged for the reasons that they have been held. This Bill has been different in so many ways. The tone of our debate has been pretty awful at times. We have not paid the respect we should have paid to what we have heard—and we have all learned a lot.
I also disagree with the noble Lord, Lord Deben, because I think this Bill is the best Bill we have ever had, not least because it has embedded legislation that has become tried and tested over the years—the Mental Capacity Act, for example. We have listened to the patient voice. We know more about patient safety than we did 20 years ago. We have the experience of many other countries.
When I stood at that Dispatch Box, hardly any of the medical colleges supported that Bill. They were sceptical and some were hostile. Public opinion was very ambivalent; it has moved. Medical opinion has moved to a position of more neutrality.
I would prefer not to give way. I have hardly spoken in this debate and I would like to make a coherent case.
Public opinion has moved, medical opinion has moved, and I think the House has moved. Many countries have taken the decision, and millions of people now have the right to choose to die without fear and pain. That of course includes people near to home in Jersey and the Isle of Man. The major critical difference is that this House has listened to the other place make up its own mind—but we have come to the decision that we must not do that.
It is not a bad Bill. It was in the process of improvement. One of the first things that the noble and learned Lord, Lord Falconer, said was that he would have accepted many of the amendments that came out of the Delegated Powers Committee report, and it is hardly surprising that that committee found the emphasis on delegation something to comment on. Private Members’ legislation sometimes does not have government rigour, so there is always a sense that you have to put things into implementation. Let us have that debate. We have not had that debate and the House has not been able to vote on it.
I have not had the experience that others across the House have had, which we have heard in extraordinarily personal and powerful statements, not least this morning from the noble Lord, Lord Markham, which was so moving. But in the past few weeks, I have heard the testimonies of people who are living with the reality of what it means to know that they are dying. One of the things they have found so difficult, as has been so well said by many people this afternoon, is the disconnect with reality that they have heard as we have wrestled with arcane elements and bureaucratic and technocratic issues that they do not recognise in their experience of dealing with, say, a multiple team of medics rather than a single practitioner, or with residence qualifications. I will not rehearse any of those arguments.
We would have done better to listen more rather than, in some instances, pontificate. We should have listened to Chris Whitty, who said: do not overengineer a process that is already extremely complicated. I really wish more noble Lords had taken advantage of listening to the Australian practitioners who told us how they manage in the most humane and effective ways to implement the Act in Australia.
I am sorry that the noble Lord, Lord Moore, is not in his place. I want the House to listen for a moment to the words of a real expert, a terminally ill lady in a wheelchair who we heard on Wednesday:
“I am a lay preacher in the Church of England. I am deeply grateful for the excellent care and treatment I receive … I do not want to die. Not now. I want to live. But alongside that desire to live I carry something else, fear, a deep, persistent fear and how my life may end. And while palliative care is often excellent it is not all powerful. It has limits … I am not alone … too many terminally ill people are living not only with pain but with fear; fear of losing control … Fear of being forced to continue when all sense of dignity and meaning has gone. That fear shapes our days. For some that fear leads to impossible choices”.
She said that she may die
“sooner than I would choose … And yet instead of confronting reality we have seen repeated delay in the House of Lords … Delay is not neutral. It is a choice. A choice that risks overriding the will of the Commons and the wishes of the majority of the public”.