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Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Royall of Blaisdon
Main Page: Baroness Royall of Blaisdon (Labour - Life peer)Department Debates - View all Baroness Royall of Blaisdon's debates with the Department of Health and Social Care
(6 months, 2 weeks ago)
Lords Chamber
Baroness Royall of Blaisdon (Lab)
My Lords, I support the Bill. I'm grateful to Kim Leadbeater for her work, and to advocates such as my courageous friend Esther Rantzen. I am also grateful to my noble friend Lady Berger for showing us a way forward, in terms of a committee, and for setting out a clear timetable.
While I warmly welcome the compassionate and moderate tone of last week’s debate, from which we learned a lot, like my noble friend Lady Thornton, I was dismayed at the conflation made by some of suicide and assisted dying. This is not just about careless language; it is actively damaging to people who are already suffering. Let us be clear: people who choose assisted dying are not suicidal. They are dying and they want to regain some choice, control and dignity where it has otherwise been stripped away. We should hear the views of terminally ill people, some of whom had a letter published in the Independent this week:
“We are not suicidal – we want to live, and to make the most of the time we have left with the people we love. But we are dying and we have no choice or ability to change that … We are not seeking to make a choice between living and dying but between two kinds of death … To equate choice and control over the timing and manner of inevitable and imminent death with suicide is deeply insensitive to those of us facing this position”.
Australia’s leading suicide prevention organisations have warned that confusing these terms can delay access to suicide prevention services for people in distress, and complicate or delay care for people with terminal illness who are seeking an additional choice at the end of life. When in 2021 I asked the Government to provide data on the number of people who take their own life every year, I did so because this debate needs to be guided by evidence and the lived experience of dying people and their families. The best available evidence estimates that around 300 terminally ill people end their own life at home every year in England. These deaths are recorded as suicides, but it is clear from talking to and listening to bereaved family members that these are not people who wish to end their own life but people who are taking drastic and often violent steps to control an inevitable and imminent death.
There is absolutely no evidence that assisted dying undermines or runs counter to effective suicide prevention strategies, nor is there evidence to suggest that legalised assisted dying leads to a shift in attitudes towards suicide. Figures from Victoria in Australia show a slight decrease in suicide rates since it introduced assisted dying.
In 2021, at Second Reading of the Assisted Dying Bill of the noble Baroness, Lady Meacher, I said:
“The current blanket ban on assisted dying does not eradicate demand for choice at the end of life; it simply forces people to take matters into their own hands in loneliness and in fear”.—[Official Report, 22/10/21; col. 495.]
Those words remain true today. We continue to hear of dying people taking their own life and we continue to hear about the devastating impact this has on their families. It is time to change the law.
I am a humanist. I respect those who believe in the sanctity of life and I subscribe to many of their values, but this Bill will not compel anyone to act against their conscience. It provides agency and choice for people who are near death, with the ability to decide how they spend their final days—whether they have faith or no faith. I am confident that the scrutiny of the Bill will be as robust in your Lordships’ House as it was in the Commons. We will do our work with compassion and diligence, improving the Bill, including by making anorexia outwith the Bill. But we must always be mindful of our duty to respect the primacy of the Commons.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Royall of Blaisdon
Main Page: Baroness Royall of Blaisdon (Labour - Life peer)Department Debates - View all Baroness Royall of Blaisdon's debates with the Department of Health and Social Care
(4 months, 1 week ago)
Lords ChamberIt will depend on the circumstances. If, for example, the doctor had a very severe doubt about whether somebody was being coerced, I would expect them to ask very many questions about their domestic circumstances. Suppose, however, it was somebody who was clearly not, on the face of it, at the slightest risk of coercion—a person of 60 in the full flush of his or her pomp, as it were—and who had said, right from the outset, “I can’t bear the thought of this illness”, and the idea that this person has been coerced is not really plausible, then I would expect the doctor to be asking different questions from the sorts of questions that they would be asking if the circumstances of somebody’s home life were completely different. It would obviously depend on what you knew as the doctor, or had found out as the panel, about the circumstances of the individual.
Baroness Royall of Blaisdon (Lab)
I apologise for interrupting my noble and learned friend, but I just point out that the BMA itself is very clear that the doctors should be able to make their own judgment in all these cases.
As I understand it, Amendment 222, in the name of the noble Baroness, Lady Hollins, would establish a specialist service to provide psychological assessment and support and then bereavement support for those seeking an assisted death. My noble friend Lady Merron has indicated the difficulties in relation to that. On the question of a psychological assessment, the position is that some work has been done abroad in relation to this. California introduced, in addition to what was required by the law in a particular part of California, a psychiatric assessment for everyone who wanted an assisted death but concluded that that was not necessary because the numbers of psychiatric assessments were producing nothing. It was only where special requirements were required that suggested it was a good thing. So I respect the suggestion but I do not think it is necessary.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Royall of Blaisdon
Main Page: Baroness Royall of Blaisdon (Labour - Life peer)Department Debates - View all Baroness Royall of Blaisdon's debates with the Department of Health and Social Care
(3 months, 3 weeks ago)
Lords ChamberMy Lords, I have put my name to Amendment 16. I also support Amendments 16A, 114 and 114A because the very general definition in Clause 1 of a terminally ill adult who has the capacity to take their own life does not contain any consideration of those who have been deprived of their liberty under Section 4 of the Mental Capacity Act. It is an unfortunate reality that many of those detained in hospitals or care homes are detained because they lack the capacity to make a decision about their own care or treatment. As the noble Baroness, Lady Finlay, said, in such circumstances it is surely axiomatic that there should be careful consideration of cases involving individuals subject to a DoLS.
As the noble and learned Lord, Lord Falconer, said, even assessing the capacity of someone with dementia or another neurological condition, for example, can be profoundly difficult. This is not just because of the frequent fluctuation of both capacity and the extent to which any identified capacity enables the making of a particular decision; a medical practitioner or social worker who meets a person for the first time may be misled as to the capacity they actually have. As the Royal College of Psychiatrists noted in its written evidence,
“an assessment of a person’s mental capacity to decide to end their own life is an entirely different and more complex determination requiring a higher level of understanding”
than in other assessments of capacity.
In the 1997 case of Re MB, the noble and learned Baroness, Lady Butler-Sloss, said:
“The graver the consequences of the decision, the commensurately greater the level of competence required to take the decision”.
Capacity assessment is not a precise science. The unique context of this Bill makes taking a cautious approach appropriate. It is common sense that there is a likely correlation between incapacity in one area, so extreme that the state must deprive the person of their liberty, and incapacity to decide whether to end one’s own life. People whose incapacity for basic decisions is so severe that they are deprived of their liberty are the most vulnerable members of society.
I want to give your Lordships a brief example. I was aware of a woman in her late 80s who had been assessed and was subject to a DoLS. She objected to it and appealed against it. Intellectually, she was enormously able, possessed of considerable social skills despite her dementia. She was able to persuade those dealing with her appeal that she had capacity despite the very real concerns of her family, who knew the extent of her incapacity. The DoLS was lifted and she went back to her own home. Shortly afterwards, she was found playing golf in the road in her pyjamas at two o’clock in the morning. She was going to the supermarket at 4 am. She was leaving the door unlocked all night for her husband and cooking his dinner every night; he had died some 20 years previously.
That lady was my mother. She certainly would not have understood a suggestion that she should opt for an assisted death. The DoLS was subsequently reinstated. This is not an unusual situation. If the noble and learned Lord, Lord Falconer, rejects these amendments, how does he consider that such vulnerable individuals can be protected from making this final decision, although they may not understand exactly what they are doing?
Baroness Royall of Blaisdon (Lab)
My Lords, forgive me. What the noble Baroness is saying is extremely interesting, but the noble and learned Lord, Lord Falconer, has already said that he will seek a meeting with the noble Baroness, Lady Finlay, and all other noble Lords who are interested in this. He is not rejecting the amendments; he is willing to enter into a discussion.
I thank the noble Baroness for that helpful intervention, but we do not know what the outcome of that meeting will be. I think I have the right to make my remarks.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Royall of Blaisdon
Main Page: Baroness Royall of Blaisdon (Labour - Life peer)Department Debates - View all Baroness Royall of Blaisdon's debates with the Department of Health and Social Care
(2 months, 2 weeks ago)
Lords ChamberMy Lords, I hope the noble and learned Lord, Lord Falconer, will forgive me for intervening at this stage. I know we are all in a hurry, and I have not got my name on any of the amendments—yet. Noble Lords will know that I have been away for over six months because of an accident on the high seas, when I found myself hurled across the room by a wave. I broke my leg, I dislocated my shoulder, and I had all sorts of internal injuries. I spent the next six weeks in St Thomas’ Hospital, instead of here talking about the Bill. I do not know quite where I would have rather been, but I am here now. I hope noble Lords will forgive my late interventions having not been at Second Reading, but I am jolly pleased to be back, and thank noble Lords for their welcome, which has been very nice.
I want to say something very briefly about burden and motivation. We all know that burden is one of the primary reasons for people to seek an assisted death. That is not only in the conversations I have had here, but we know it is the primary reason throughout the world. Burden is real. It is why, in another life, I set up the organisation the National Centre for Independent Living, because I realised there were hundreds of disabled people living in institutions or in their mum and dad’s back room, basically just surviving, not living.
I also campaigned for a law called the direct payments Act, with which the noble Lord, Lord Harper, will be very familiar. That allowed severely disabled people to employ their own personal assistants, so that they would no longer be a burden on their families. No one wants to rely on their families or their spouses. I certainly do not want to have to rely on my husband to get me up in the morning or to put me to bed at night. I am his wife: he is not my carer; he is my husband. And that is a good relationship.
There is an answer to burden, and it is good social care support. Good infrastructure or technology allows you to be independent and not to be a burden on others, but to begin to plot your life as you want it to be. I know this because I have helped hundreds of disabled people to do it. Some of them had progressive conditions and would not live for long, but the lives they had for those years were good lives—good months and good weeks.
I am not saying that it is always the answer, but we surely must find out from anybody who is asking for their life to be ended, “What are your reasons? Is it because you do not have adequate social care? Is it because you cannot get out of your house, because nobody from the local authority has come to build you a ramp?” For disabled people, people with terminal illnesses and people with progressive conditions, these small things can make the difference between them wanting to die and them not wanting to die.
I know this, because they have told me. Many disabled people come up to me and say, “Jane, you know, I love my independent living and I love my direct payments. If that was taken away and I was forced to go into an institution against my will, I do not know what I would do. I would probably ask for an assisted death”. They were not joking. It is the truth. We should all think about motivation and that is why I support this suite of amendments. We have not really grasped that nettle.
Baroness Royall of Blaisdon (Lab)
My Lords, I too warmly welcome the return of my noble friend Lady Campbell—the most extraordinary person and advocate for disabled people and so many more in our societies. I just remind the Committee that, in all these discussions about burdens and people who have had a stroke— I am terribly sorry that the husband of the noble Baroness, Lady Grey-Thompson, had a stroke—we are talking about six months for somebody who has been diagnosed with a terminal illness. We should reflect on and remember that in all our deliberations on the Bill.
I may just build on that, because the noble Baroness is quite right that it is six months. This is absolutely about choice, and behind that choice is the person’s motivation. Of course pain is a very valid reason, but it is not the only reason as, again, research has shown. For lots of people it is about the loss of dignity. For others, it is about the loss of control of bodily functions or about losing autonomy. It is about being less able to engage in enjoyable activities.
Yes, sometimes it is about feeling a burden, inadequate pain controls or financial concerns as well, but that shows that it is a complex area. On average, people gave three or four different reasons or motivations. It is not for us to assess what a valid or invalid motivation is. We should be considering whether there is any coercion in those decisions but, beyond that, it is absolutely about choice. Recognising choice is about people having their own motivations behind this. It is not for us to decide whether they are valid or not.
Baroness Lawlor (Con)
My Lords, I have added my name to these amendments from the noble Lord, Lord Frost. I agree with what has been said. I agree with the need to avoid euphemism. The noble Lord, Lord Frost, raised the point, and the noble Baroness, Lady Fox of Buckley, came back to it, that some will object to the phrase “commit suicide”, but I will make a stronger case on that point.
With regard to many cases of suicide, these reservations would be justified. “Commit” implies clear intention by the person concerned to take his own or her own life, but, as we have heard throughout this debate on the Bill so far, suicide can be the result not so much of firm, clear intent, but of the perpetrator sliding inexorably into hopelessness about the circumstances of their life or being confronted by a lack of help. If the inability to cope with such misfortune leads to depression and then suicide, I agree that it is misleading to talk of committing suicide, but the cases envisioned in this Bill are quite different. As the Bill makes clear, the person must have a clear, settled and informed wish to commit suicide. Here, then, “commit suicide” is indeed the appropriate phrase.
Moreover, the phrasing in the Bill, in terms of assistance to end one’s own life, carries, as has been said, a risk of confusion between what the Bill proposes—the deliberate action to bring life to an end—and the normal practice of doctors, as the noble Baroness, Lady Finlay, mentioned earlier, which is to ease suffering and sometimes to use palliative measures that might, although this is not their aim, shorten life. The advocates of the Bill have often spoken in a way that blurs this distinction. It is important that the phrasing of the Bill guards against such confusion.
Baroness Royall of Blaisdon (Lab)
My Lords, I recognise that the noble Baroness, Lady Fox, will have heard this before, as will have many others, but the fact of the matter is that the Bill talks about assisted dying. “Dying” tells you what it is all about, so I do not think that we need to have the word “suicide”. I say this because I have spoken with the families and loved ones of people who wish to have an assisted death; those who wished that their loved ones had had an assisted death, because they could see the suffering endured by the person who died and the people who were caring for them; and those who are left behind. I have had many conversations and those people all feel strongly that those who want to have an assisted death are not committing suicide; they want to regain some control and want to live for the last few months of their life with some comfort. Just because they ask for an assisted death does not mean that they are actually going to fulfil that, but it gives them and their families comfort. So, please, can we not talk about suicide? We are talking about dying and that is absolutely fine. I do not wish for the people who are already suffering or the people who are caring for them to have more distress in their lives.
My Lords, I find it strange that the noble Baroness, Lady Royall, should be making the argument that the word “dying” tells us all that we need to know. If that were so, we would not need the Bill. The Bill is about a very specific thing, which is choosing to end your own life and getting help with it. The importance of clarity and frankness in language in the making of law is very great. It must be distinguished from perfectly legitimate what I shall call political language.
Take, for example, the right to life, which is one side of the argument in another matter, and the right to choice. Those are both perfectly good phrases about the subject of abortion, but they were not suitable phrases for law. When you talk about law, the word that should be used is “abortion”. That is what is actually happening. I am not saying that there is any dishonesty here, but it is inappropriate for the making of law.
I strongly support what the noble Lord, Lord Frost, said about possible ambiguities and misunderstandings. I give an example, which is nothing whatever to do with assisted dying, but it just illustrates the point. As we ran up to the 1983 general election, Labour had a policy of unilateral disarmament. The Tories were against unilateral nuclear disarmament and attacked it. Somebody wrote a letter to the Daily Telegraph saying, “I do not think people know what the word ‘unilateral’ means, and if you call it ‘one-sided disarmament’, people will understand what this is about”. The Tories seized that, suddenly changed all their propaganda to talk about one-sided disarmament and the polls shifted very dramatically against one-sided disarmament. The importance of normal English is very significant. Again and again, we can see public confusion, which must be avoided, about what is actually proposed in the Bill.
Finally, there is a contradiction in the arguments made by supporters of the Bill—I think that the noble Baroness, Lady Royall, was in this situation. Since the greatest thing that is being argued for by supporters of the Bill is autonomy, it is important to have a word or phrase that embodies that autonomy and shows who is making this decision and whose agency it is. The phrase “committing suicide” exactly establishes the agency and exactly shows the autonomy. It is contradictory to advocate for autonomy and then to take refuge in euphemism.
Baroness Royall of Blaisdon
Main Page: Baroness Royall of Blaisdon (Labour - Life peer)(2 months, 1 week ago)
Lords ChamberMy Lords, the noble Lord, Lord Stevens, who speaks from great experience and professional knowledge, made a very clear case about how the assisted dying navigator is quite outside the normal purposes of the National Health Service. I guess it could be described, in effect, as a form of advocacy. In the ancient world, the dead were carried across the River Styx by Charon. It seems that role would be performed by the navigator, because where is he navigating you to? It is to the River Styx; he is not trying to navigate you to anywhere else.
If that is included in the National Health Service, it would create a quite different purpose from the normal purposes, as the noble Lord, Lord Stevens, described. I wonder, therefore, whether we should consider whether this actually amounts to the National Health Service trying to persuade people to accept assisted dying. If it does, and if you think of the vulnerability of the individual cases that so often will occur, could it be argued that it might become an institutionalised form of coercion?
Baroness Royall of Blaisdon (Lab)
My Lords, I merely point out that this is not a choice between investing in palliative care or changing the law so that we have an assisted dying service. We need to do both. I am mindful of the point made by the noble Lord, Lord Stevens, about the lack of response from the Department of Health and Social Care. It would be very good if some others of us could press for that, because it would be interesting to know how, when and how much the Government are going to invest in palliative care. Whatever we believe about assisted dying, we all fundamentally believe that palliative care needs more investment and should not be a postcode lottery.
My Lords, I was not intending to stand up today, so I apologise, but this group has not gone at all how I thought it would.
When I looked at Amendment 771 and the proposed assisted dying help service, I was confused. I had thought that navigators might take a similar role to that of independent advocates. We have a group about the importance of independent advocacy, which I am a huge supporter of, and about advising people on other care, health or treatments. That is coming up in 19 groups’ time. But it seems that Amendment 771 is illustrating the flaws of the entire Bill, whether that is geographical provision, training and qualifications, the right of practitioners to withdraw and the need to support vulnerable people.
We have also had a debate today about the funding of the proposed assisted dying help service. We have another group—group 30, which I hope we get to—on the provision of an assisted dying service by groups other than the NHS. I suggest that noble Lords opposite take the suggestion of the noble Baroness, Lady Royall, to press the Government to provide clarity, before we get to that group, on the funding of an assisted dying service and—following the point from the noble Baroness, Lady Finlay—the future funding and support for hospice care.
I have an amendment in that 30th group, which I tabled because I think that the proposers of this Bill have missed a bit of a trick. If you want to set up an assisted dying service, you should do so in parity with the current arrangements for the hospice service. If we understand what the funding for the hospice service will be, we can have our debate in group 30 on alternative provisions.
Baroness Royall of Blaisdon (Lab)
I mentioned the future of palliative care. I did not mention the costs of an assisted dying service, which I am very willing to ask for as well, but at that stage I was focusing on palliative care.
I thank the noble Baroness for her intervention. I think both would help us, because there is confusion about the future of support for palliative care, and confusion as to whether the funding of an assisted dying service will take away from other services within the current NHS provision.
Finally, I just want to say that it is very different from the Scottish Bill, which very specifically does say that it will be within the NHS.
I am grateful to the promoter of the Bill for that, but that is a broad defence of the legislation as written and it takes us to the critical question for the Minister, which relates both to resource and timing.
The Government have committed additional money for palliative care, for hospices, which is welcome: £100 million for adult care in hospices; £80 million for children’s care in hospices. But those who lead the hospice service say that this additional money has already been swallowed up in additional costs. It does not augment palliative care. Yet, money is inevitably going to be diverted, if we pass the amendment of the noble Lord, Lord Pannick, and set this service up, as the promoter of the Bill acknowledges. Yet, as the noble Lord, Lord Stevens, has pointed out, we have not had from the Government any adequate response on what additional resource might be devoted to palliative care, despite the fact that we had a national report into end-of-life care, produced by Marie Curie Cancer Care and others, more than 15 months ago. There has been no adequate response to that report. As the former Prime Minister, Gordon Brown, has said, it is unconscionable that we should pass the Bill until we have had that response from the Government. It would be illuminating to know what the Government’s plans are on resources, not just if the amendment is passed but for care overall.
There is another responsibility on the Front Bench as well. Is it the case that, in the particular framing of the Bill we have in front of us, a future Government or Administration could create the service that the noble Lord, Lord Birt, wants by the simple assertion of a statutory instrument, 90 minutes’ debate, no proper vote and then, suddenly, the creation of exactly what the noble Lord, Lord Birt, wants with his assisted dying help service? It will not be good enough for Ministers once again to talk about studied neutrality and to canter through the speech that may have been written for them by diligent public servants in their own department. We need to know: if the Bill is passed, could it be the case that the service that the noble Lord, Lord Birt, wants could be created by statutory instrument without appropriate scrutiny? Because if the Bill does mean that, then what we know is that we are creating a Bill with holes, opportunities, lacunae, slippery slopes, whatever language you may wish to use—a Bill which is, in itself, unsafe.
Baroness Royall of Blaisdon (Lab)
My Lords, I am not a Whip, but I have been here all morning and I think that many of the issues have been debated at length. The questions asked by the noble Lord, Lord Gove, are very pertinent, but I suggest that it would be good to hear from the Front Benches at this stage.
My Lords, I listened carefully to what the noble Baroness, Lady Royall, said, but I believe it is important that Members who feel they have a contribution to make are able to make that contribution without being cut short.
Baroness Royall of Blaisdon (Lab)
Forgive me. I did not realise that there were other people who wished to speak. There was a pause.
I thank the noble Baroness for that.
This has been a telling debate thus far, because we are told that some of the points are based on opinion polls. We are not an elected Chamber and therefore we do not have to be swayed by how we are to get elected next time. Therefore, it is so important that we do not make laws on opinion polls. In fact, we have to debate the issues carefully—and trust that we are therefore making mature decisions—and seek to get the Bill right, because the issue that we are debating concerns life and death.
I have found something somewhat surprising whenever the cost has been talked about. Many people are rightly demanding an answer concerning the cost. The noble Lord, Lord Markham, mentioned it a number of times. I was in this House when he was a Minister, but he is not now answering for the Government; I believe it is important that the answer comes from the Government Minister, who should give us the up-to-date cost. For any of these issues, costs do not minimise over the years. In fact, they increase—we will find at the end of the day that the costs will escalate. We heard in the debate yesterday that the cost of the Chagos Islands will be £3.4 billion, yet it was suggested on the Opposition Benches that it will be £34 billion. I am sure Members realise that there is quite a difference between those two figures—there is a dot between £3.4 billion and £34 billion. Nevertheless, we are talking about massive sums of money. We are also talking about money that could be taken from another part of the health service, which in many parts of the country, and certainly in Northern Ireland, is crying out for money; it needs every pound it can possibly get.
I believe the Bill was defective as it came from the other House, but I also believe that what has been proposed by the noble Lord, Lord Birt, would make the Bill worse. The proposal here undermines choice even more. There is no equity of access under these amendments. What genuine choice is there if you can get an assisted death within 30 days but you have to wait months for the palliative care that you need? Palliative care is not available in many parts of the country; it is certainly not equally available right across the country.
Do the supporters of these amendments accept similar amendments that require palliative care treatment options to be made available and accessible within the same timeframe as this? They might say, “Yes, we would accept that”, but it is not a reality. There is no reality in which you will get palliative care within 30 days, because it is not available in many parts of the United Kingdom. How is it fair that terminally ill people get a personal navigator to support them through the process of getting an assisted death, but they do not get a personal navigator for gaining access to the palliative care they desperately need?
There are issues that need careful reflection. In the light of what the noble Lord, Lord Empey, said, I note the following. In our debates over the past few weeks, the noble and learned Lord, Lord Falconer, has said that he would reflect on some of the issues raised, but up to now I have not heard what that reflection has brought about in changes that need to be made to the Bill. Perhaps it would speed up the debate if we could get some knowledge about the reflections that he has had and some of the changes, in the light of the debates that have already taken place, that he will actually make in order to make the Bill more acceptable to many noble Lords.
The issue that we need to continue to reflect on is the extraordinary speed suggested by the noble Lords, Lord Birt and Lord Pannick. It undermines safeguards. Mandatory timelines force decisions without proper investigation. Panels must decide within two days of referral, even over weekends. I know of no other decisions made in the health service for which you can be promised that. There is also no judicial precedent for such haste, because courts take months for life and death decisions—yet this process is so fast.
Then we come to prognosis inaccuracy, which seems to be ignored. As I said to the noble Lord, Lord Pannick, in a previous debate, I have known people who were given a six-month prognosis but continued to live three years later. Therefore, there is no consideration of prognosis inaccuracy. Rushing assisted death risks premature deaths.
Then we come to mental health risks. Reflection periods would be cut to 24 hours. Experts warn that depression after diagnosis is often temporary and treatable. Why can patients get an assisted death in 30 days but have to wait months for palliative care? Also, the amendments erode protections rooted in law and ethics; suicide prevention remains government policy.
In conclusion, I ask the Minister these questions. How can panels make life and death decisions within 48 hours without sacrificing due process? What safeguards exist against coercion when timelines are compressed, as suggested by the noble Lords in their amendments? How will the National Health Service meet these demands when GPs and social workers are already overstretched? We had and have, in past debates and up to this moment, numerous questions, but, from the noble and learned Lord, Lord Falconer, the Front Bench and the Government, we have very few, if any, real answers that we can hold on to.
My Lords, very briefly, I support these amendments. The process is designed only to kill but, inevitably, as noble Lords have explained, there will be complications. People react differently to different drugs. Only with full information will the patient be able to consent. Without it, that consent cannot exist.
I have questions for the noble and learned Lord, Lord Falconer. Why is the doctor required to discuss the nature of the substance—how it will bring about death, how it will be administered—but not to tell the patient that it may not be successful? Why must the doctor discuss with the person their wishes in the event of complications? Why is there no requirement to explain and discuss the risks of complication? How can a patient give informed consent? If the noble and learned Lord does not intend to accept these amendments, can he tell the House what his intentions are?
Baroness Royall of Blaisdon (Lab)
I refer the noble Baroness and other noble Lords to Clause 12(2)(d) of the Bill, which says that the assessing doctor must
“discuss with the person their wishes in the event of complications arising in connection with the self-administration of an approved substance under section 25”.
My Lords, that is what I just said—why must the doctor discuss with the patient their wishes in the event of complications arising? Why is there no requirement to explain and discuss the risks of complications?
My Lords, in this group of amendments—the two parts of it, if you like—I support the amendment that the noble Baroness, Lady Berger, has brought forward, which sets out that the primary motivation for seeking assisted death is terminal illness. That is important because, otherwise, the terminal illness is simply a trigger.
One reason why I think this is important is something that I am very nervous about. I am not saying, by the way, that this is the motivation of the sponsor of the Bill, but he will be aware that many people think that this Bill is just a first step—there are campaigners outside this House who absolutely think that. One problem with the way that it is drafted at the moment is that, because the terminal illness is simply a trigger, it would be very simple, if this Bill were on the statute book, to simply remove that qualification, so that the rest of the structure and processes in the Bill would then allow anybody for any reason, without having a terminal illness, to seek an assisted suicide. With the amendment that the noble Baroness, Lady Berger, suggests—that the reason why you are seeking an assisted suicide is your terminal illness—then you could not do that. If you were to remove the terminal illness piece, there would be no motivation, so you would have to do a lot more work. Those of us who are nervous about this Bill as a Trojan horse would be more reassured if that motivation were in place.
The second part to this goes to what my noble friend Lord Deben said about what the public think that this is about. If we look at the opinion polling on what the public think should be reasons why someone should be able to seek assisted suicide, the powerful reasons that many members of the public—not all, but significant numbers—support is to relieve suffering and pain. People are broadly compassionate and think that that is a good idea. What they do not support is people being able to seek assistance to kill themselves because they are poor or for other reasons. They think that that is a terrible reason. The amendment from the noble Baroness, Lady Berger, and other amendments in this group would more closely align the way the Bill is structured and what it would do with what many members of the public think that it should do.
I also support Amendment 320ZA from my noble friend Lord Blencathra, which explicitly says that the purpose of seeking assisted suicide cannot be various societal factors, such as housing or financial circumstances. That is important. The noble and learned Lord, Lord Falconer, and I had an exchange last week where he made it very clear that he thinks that, if those things are the drivers for you wanting to end your life, he is okay with that. I am not, and the polling evidence is that the public are not okay with that either.
Choices should be proper choices. My noble friend Lord Deben set out very well the sort of society that I think people want to see. If people want to end their life because of something not to do with their terminal illness or their pain or their suffering—because they do not have enough money or they have poor housing, or they have other things that they are not happy about—then those things are remediable. They may be expensive, but they are fixable and we can do something about them. I want to live in a society where we do something about them and we make people’s lives better—even if it is only for the last few months of their life, that is still worth doing.
My noble friend Lord Deben is right. He is not saying that the sponsor or those who support this Bill are thinking like this, but he is absolutely right that people make decisions all the time based on weighing up financial consequences. Noble Lords have talked about NICE today. When it assesses approving drugs, NICE looks at quality adjusted life years against the price of the drugs to the health service. It literally weighs up how much valuable quality life you are buying versus how much money we are spending. My worry is that, if you do not exclude people wishing to end their lives for these other reasons, we will get ourselves in a terrible place where we are not prepared to spend the money on improving people’s lives but rushing them towards ending their life in a way that is not necessary.
That is a big choice for Parliament to make and there are different views. The noble and learned Lord, Lord Falconer, set out his view last week. I have set out mine and my noble friend Lord Deben has set out his—we are in agreement. That is a decision for the House. I hope that noble Lords will support the amendment tabled by my noble friend Lord Blencathra and make the decision that you can only seek assisted suicide if it is because of your terminal illness, not because of your other circumstances. I think that that is the right sort of society we would be creating. The package of amendments in this group would improve the Bill. They would also reassure many people who are concerned about the Bill to not be concerned about it, which would be helpful for everybody. I commend them to noble Lords.
Baroness Royall of Blaisdon (Lab)
My Lords, I completely agree with the noble Lord, Lord Deben, on the society that we are seeking to have. We agree on so many things. We are on different Benches, but we agree on many things. However, the pre-eminent reason for this Bill is a terminal illness for six months. I understand what the noble Lord opposite is saying—that one cannot be sure—but we are talking about six months. As other noble Lords have said, one might aspire to have access to the drugs so that one could take one’s life if one had a terminal illness and it was thought that it was going to last for six months, but it does not mean to say that people are going to use them. It is important to remember that all the time. Six months and a terminal illness is the important thing to keep in the forefront of our minds at all times.
My Lords, the noble Baroness has prompted me to return to the point made by my noble friend Lady Cass, because the chance of being right about six months has been estimated at around 48%. It is just plucked out of the air. It depends on the individual, how their body responds to whatever disease it is and lots of other factors. I was concerned when the noble Lord, Lord Markham, said that these are people who want to live. They should be having access to specialist palliative care to maintain their quality of life as high as possible, yet we have huge gaps in this country.
Terminally Ill Adults (End of Life) Bill Debate
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(1 month, 4 weeks ago)
Lords ChamberI just want to clarify that many of these organisations—including five royal colleges, the British Association of Social Workers and all the organisations for and on behalf of disabled people—are neutral on the principle of assisted death, but no external organisation will attest to the safety of the legislation we are discussing today and on previous days. I think that should be of concern to us all.
Baroness Royall of Blaisdon (Lab)
My Lords, many points have been made around the Chamber about disability. The most recent large survey, carried out by Opinium in February 2024 of nearly 11,000 respondents in the UK, showed that 75% of the general population were supportive of the Bill and 14% opposed it. Of those who had a disability, 78% were supportive and 14% were opposed. It is very important to put those figures on the record.
My Lords, Amendments 88 and 89 are in my name. I tabled them based on my experience in my former career as an athlete, where I knew a significant number of men and women who had varying degrees of eating disorder. I probably had disorderly eating behaviour rather than a diagnosed eating disorder. I very carefully managed and adjusted my eating to try to achieve my goals.
As an athlete, you have a number of measurements. You have your skinfolds measured several times a year; the amount of fat you have in your body is measured. Keeping your funding going is dependent on having low results, as well as on your performance measures. I competed in a sport where power to weight was really important. My race weight, as an adult female, was 45 kilograms—about the same weight as an 11 year-old girl. I had to keep to that weight because I had a very expensive chair built around it.
In the process of training, I vomited regularly. I cannot remember a dentist who has not asked me, very directly and with no particular care around me, “Are you bulimic?”, because my teeth show signs of bulimia. If I was, I do not think that would have been the way to address it. I have had a very close friend who became very ill with anorexia. You are in this impossible situation of trying to help, support and guide them through. It is a terrible thing for people to go through.
That is why I find it slightly extraordinary that we are still having to deal with these questions today in the Chamber, because the danger of this Bill to people with eating disorders was first raised on 30 October 2024. Eighteen experts, including leaders of the Royal College of Psychiatrists’ eating disorders faculty, signed a letter to the BMJ saying that the Bill
“fails the public safety test”.
Since then, the issue has been pointed out in oral evidence to the Public Bill Committee by Chelsea Roff, it was discussed in Committee in the other place, the Bill has been amended with support from the Commons sponsor on Report and the issue was raised by a coalition of eating disorder charities in two open letters and by the Complex Life and Death Decisions group at King’s College London. However, I think it still has not been resolved—as the noble and learned Lord, Lord Falconer, presumably agrees, because he has tabled an amendment in this group to fix the issues.
Last week, we discussed in-person assessments and several noble Lords noted that the honourable Member for Spen Valley, Ms Leadbeater, had identified Zoom consultations as a potential problem and said she was considering an amendment, but the issue had never been resolved. Something analogous has happened with eating disorders. Everyone knows that there is a problem, but nobody has found a way of fixing it. This is significant, first, because it shows why this whole process is taking longer than it might have needed to, and, secondly, because it is unclear how the sponsor wants us to interpret Amendment 87.
Terminally Ill Adults (End of Life) Bill Debate
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(1 month, 1 week ago)
Lords ChamberMy Lords, to some extent this group of amendments goes to the core of a lot of the potential downsides of this Bill because, whether we like it or not, it is going to be a source of coercion.
If we go back a few weeks to the issue that was drawn to our attention by the noble Lord, Lord Stevens, concerning the role and the purpose of the National Health Service, clearly, that would need to be changed because we are talking here about a mechanism for ending life rather than a service that does its best to preserve life. To anybody who has had to spend a lot of time around hospitals—be it as a consumer of, or a relative of a consumer of, NHS services; or if you have had any role in government, even at regional level, dealing with health services—it is inconceivable that looking at the balance sheet is not going to be an issue for a clinician and a trust. That is the nature of the beast if you are the finance director of a trust and it is over budget, as they nearly all are. In Canada, we see that some people are boasting about the money they have saved by providing assisted deaths. I do not believe for one moment that that factor can be airbrushed out of this equation as far as this legislation is concerned. While I do not necessarily accept or agree with every amendment in this group, it draws our attention to the principles at stake.
It is in those circumstances that we have got into the habit in this debate of euphemisms. We call one thing by a certain name, but we know it actually means something else. In that regard, I draw the attention of the Committee to a debate on assisted dying that took place during the last iteration of this Bill, proposed by Lady Meacher, on 22 October 2021. This is the point I want to try to get across. Incidentally, that Bill had 13 clauses and 10 pages, compared to the 59 clauses and 51 pages we are looking at today. After Lady Meacher proposed her Bill at Second Reading, the noble Lord, Lord Winston, who I think is not in his place, spoke. He said that the Bill should refer to “euthanasia” rather than “assisted dying” as the Bill’s title did not represent what was intended. He went on to provide the Greek definition of what the word “euthanasia” means.
These amendments go to the core of a couple of issues. The first is the rationale behind the National Health Service in the first place, and how it would be changed and turned if it is carrying out a service which is anything but—
Baroness Royall of Blaisdon (Lab)
My Lords, the point that the noble Lord is making is very interesting, but he may have heard my noble friend Lord Winston say previously in the debate on the current Bill that he has changed his mind. He may well have changed his mind about the words that we use in relation to assisted dying.
I accept that that may well be the case. I am simply referring to what was in Hansard in 2021. The noble Lord may have changed his mind, as we all do over our lifetime, and rightly so—if you have a completely solid view of everything throughout your life, it is not a good thing. I am not in any sense trying to demean his position in any way; he is a very highly respected member of your Lordships’ House. My point is that his reference to the euphemism is still valid in my view.
Coming to the nuts and bolts of how things would work in practice, at Second Reading of this Bill, and indeed in previous iterations in which I have had any role, I drew attention to one of the key issues: changing the nature of the service that we are funding. If we decide as a Parliament to make assisted dying, or whatever phrase one wishes to use, a legal activity, that does not necessarily mean that the National Health Service has to pay for it. Can you imagine the finance committee of a trust discussing its budget and getting into an argument? The sums may be modest, but to even put something such as that in this context, when we are talking about life and death, is fundamentally flawed, morally and in every other way. The noble and learned Lord needs to reflect on some of these matters.
My Lords, as a clinician for 50 years in the NHS, I find the noble Lord’s suggestions quite offensive. We have been asked to be kind today and I would ask him to be a little kinder to NHS clinicians in their decisions to try to help people at the end of life.
I just point out to the noble Lord, Lord Harper, that when you are talking about a fully funded palliative care service you are talking about millions and millions, and what has to be allocated. It is exceedingly difficult for the NHS to come to that decision, particularly in light of the fact that insufficient clinicians have been trained in that area, as I am sure the noble Baroness, Lady Finlay, will agree. Certainly, for the assisted dying service we are talking a few thousand—not anything like the sums of money that a palliative care service costs. Let us be realistic about what we are asking for.
Baroness Royall of Blaisdon (Lab)
I shall briefly intervene. I am sure that my noble and learned friend will answer this later, but I want to put on record that nobody who is a supporter of this Bill—an amended Bill, as it goes forward—would ever put costs as the major reason for supporting it. I just want to put that firmly on the record.
Could I come back on that? I never said that it was a major reason: I just said that it was a consideration that had to be made. Budgets are very strapped in the NHS at the moment and, if it can ensure that people who are blocking beds vote for assisted dying, that will save the hospital money. That is just a fact of life.
Terminally Ill Adults (End of Life) Bill Debate
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(2 weeks ago)
Lords Chamber
Baroness Smith of Llanfaes (PC)
My Lords, I shall speak to my Amendments 844, 903 and 905 in this group, but I first turn the Committee’s attention to the LCM debate, as the noble Baroness, Lady Coffey, just did, that took place in the Senedd on 24 February. At the beginning of the debate, Jeremy Miles, the Cabinet Secretary for Health and Social Care, set out to the Senedd:
“I … wish to be clear about what may happen if the Senedd were to withhold consent today. The sponsors of the Bill have confirmed that, in those circumstances, they would seek to remove clause 42 from the Bill. That would mean the law in England and Wales would change to permit assisted dying, but there would be no powers in the Bill for Welsh Ministers to implement assisted dying services in Wales or to oversee or regulate such services”.
That clarification is important for the Committee. Throughout the debate, many MSs stated dissatisfaction with how the Senedd was being treated. I apologise, but I will quote several MSs today because I think it is important that they are heard here. One said:
“We are being asked to vote in the dark”,
and another
“we’re … being asked to sign a blank cheque”.
Another said
“we are … legislating with a blindfold over our eyes … This is no way to treat a Parliament. This is no way to treat a nation”.
The Senedd was put in an impossible situation by this Parliament. A vote against this LCM would result in assisted dying services being available only privately, and a vote in favour at least retains some power for the Senedd to shape such services through the NHS in Wales. That was what the vote was about specifically. I thought this was concisely put—
Baroness Royall of Blaisdon (Lab)
The reason that the Senedd was voting in the dark was that this Bill had not reached its conclusion in the House of Lords. If it had done so, the Senedd would have been legislating in the daylight.
Baroness Smith of Llanfaes (PC)
I thank the noble Baroness for her intervention. However, that is not the case in terms of the practical reason why the Senedd Members raised those points; it is also in relation to the fact that they passed an amendment to this LCM, which I was lately going to touch on, which states that the Senedd “regrets” that this Parliament has not properly considered the
“constitutional implications of this Bill for Wales”.
It is important to note that, yes, they passed the LCM, but they amended it with a point about this Parliament not having done its duty and gone through the implications for Wales in detail. A lot of those in Wales who support the Bill just do not feel that they have had an opportunity to shape this Bill. I thank the noble Baroness for her intervention, and I hope that that clarifies my point a little further.
The point was concisely put by Adam Price during that debate:
“Supporters of assisted dying do not argue for access determined by wealth. Opponents do not argue for a system outside NHS governance in a matter as grave as this … No country’s Parliament should have to stand aside while another decides the terms on which its own citizens live and die”.
He went on to say that he sincerely hoped that the vote was the last time that the Senedd—and other devolved Parliaments—was put in that situation.
The Senedd passed the LCM with an amendment stating, as I just mentioned, that the Senedd:
“Regrets the lack of thorough consideration of the constitutional implications of this Bill for Wales during the legislative process”.
As I just said, the passing of that amendment also showcases that we have failed in our own duty here in relation to those implications.
Amendments 903 and 905 in my name aim to restore an amendment that was agreed in Committee in the other place. The amendment was later taken out on Report without resolving the purpose behind it having been put forward and agreed in Committee. Simply, my amendments would give the Senedd a vote on the final Bill passed here before regulations could be created by Welsh Ministers for the delivery of an assisted dying service in Wales. The reason for this amendment is simple: as I highlighted at Second Reading, although the criminal law is a reserved matter, the legality of assisted dying in this case, and the delivery of such a service, is a devolved matter. Not allowing the Senedd to have a vote nor the opportunity to fully scrutinise and amend this Bill infringes on devolution and disrespects the roles and duties of Members of the Senedd.
Health and social care makes up over half of all spending from the Welsh Government’s budget. Do noble Lords not agree that it is therefore essential that Members of the Senedd are able to scrutinise all health spending? Not allowing Members of the Senedd to shape this Bill limits their ability to do that. The Covid pandemic is the most recent prominent example of how Wales does things differently when it comes to health. This Parliament needs to wake up to this reality and let devolved Parliaments do their job. This matter is an anomaly from a devolution perspective. As in Scotland, this is a fully devolved area. The Scottish Parliament recently had the opportunity to debate and shape its own Bill that could be suitable for Scotland. If the Scottish Parliament has the right, why can this not be the case for Wales?
I turn to Amendment 844, which would create a new clause to address this exact issue. The amendment would deliver parity between Scotland and Wales on this matter by amending the Government of Wales Act to remove offences related to suicide from reserved matters. This would allow the Senedd, if it chose to do so, to introduce its own Bill on assisted dying. It would allow the Senedd’s health committee to take its own evidence, including from NHS Wales and the Welsh Government’s Health Secretary. Your Lordships will be aware of the list of witnesses who were called to recent Select Committees ahead of this Bill. The chief executive of NHS England was called to give evidence, but there were no representations from Wales. I respect the work that members on that committee carried out; however, would they agree that the Senedd should also be able to take evidence from within Wales and be able to make decisions on the establishment of a new service in Wales for the people of Wales, based on Wales-specific information? Amendment 844 would be the best course of action in order to recognise that this Bill has not been designed with Wales or for Wales and to align Wales with Scotland in making a decision on this matter.
I turn finally to the amendments in this group from the noble Baroness, Lady Coffey. In the hypothetical scenario that we passed her amendments alone, we would be leaving Wales in a grey area. Wales would be taken out of this Bill, but with no way for the Senedd to legislate on this matter. In this Committee, we must consider the full consequences and where those decisions will then lie. My Amendment 844 would avoid that scenario and ensure that the Senedd had a way of legislating on this matter if it chose to do so.
To conclude, and as I already highlighted at Second Reading, I support people’s right to choose how they die. However, in the case of services being made available in Wales, they must be shaped and designed by the people of Wales. That must be an ability for the Senedd and not for us here in Westminster.
What I am saying is very simple: the proposers of this Bill have not properly taken into account the particularities that the Welsh have put forward so nobly and well by the noble Baroness, Lady Smith. I never hear from the proposers of this Bill any comprehension or understanding that some other people might have contributions to make. That is why we have had no meaningful changes to this Bill. It is a Bill which is opposed either in principle or in practice by everybody who is supposed to carry it through, and it has now caused real trouble in Wales. I am merely asking the proposers of the Bill to give this House some belief that they really are listening and are not treating our conversations as nitpicking.
Baroness Royall of Blaisdon (Lab)
My Lords, I would like to point out that my noble and learned friend Lord Falconer has in fact tabled amendments and they have not yet been debated because we have not reached them in the Marshalled List. With regard to the very interesting and important discussion about Wales, many of the facts which were quite properly given by the noble Baroness, Lady Smith, are related to the devolution settlement itself. That is, quite frankly, a much wider issue than that which we are debating today.
My Lords, as a former member of another place who represented 2,900 square miles of Wales, I have the feeling that we are getting into a horrible conceptual muddle in this debate. I feel the phrase “horses and carts” applies to several sentences around what is being debated here. I was one of the advocates of devolution when I was a Welsh Member of the other place and supported it very strongly when it came about, and I absolutely recognise the points that have been made so ably by the noble Baroness, Lady Smith. However, after hearing earlier parts of this debate, what I am hearing is that actually the money side of this is not the horse; it is part of the cart.
We have heard Ministers, including my noble kinswoman by the way, repeatedly saying in response to amendments in this debate that this House and this Parliament decide whether we pass this Bill. If the Bill is passed, the Government will have to provide the resources to enable it to work. I apprehend that, if this Bill is passed, if it is given enough time to reach the end of its parliamentary stages, which I think it should be allowed—though I do not support the Bill in principle, by the way—then the money would have to come from somewhere and the adjustment would be made to enable Wales to provide the services required.
We are not going to change the devolution settlement in this Bill—of course we are not. That is not the issue and that is not what is before us. Instead, this comes back to the Government. I entirely agree with the speech from the noble Lord, Lord Carlile, but we are supposed to rely on the Government saying that, after we pass this, they will deal with the money. That is the problem. I do not believe them. They have to tell us what the money will be and where it will come from. They have to tell the Welsh that the money going to Wales will be increased proportionately so that Wales can deal with it. Until they do that, we cannot make proper decisions. I totally agree otherwise with what the noble Lord, Lord Carlile, said.
My Lords, I will speak to Amendments 175 and 384, in my name, and I am grateful to the noble Baroness, Lady Fox of Buckley, for her support.
These amendments concern prognosis. We have discussed prognosis briefly in previous debates, but I wanted to raise this in the context of my own experience of cancer and to bring some sort of mathematical thinking to bear on the question. In August 2023, I was diagnosed with stage 4 oesophageal cancer. It was a fatal diagnosis and I was told that I had 12 months to live—18 months, if the character of my tumour qualified for immunotherapy, which it did. I do not need to be congratulated on being particularly brave for sharing this story, since noble Lords will hear, if they stick around, that the story has a happy ending.
Within a week or so of that diagnosis, a friend of mine sent me an article which had been written in 1991 by Professor Stephen Jay Gould of Harvard University. Professor Gould was an evolutionary biologist, and he was quite well known because he wrote a number of popularising science books—the sort of thing that sixth-formers and undergraduates would have read widely. He was a well-known and liked figure. The article was about his story. In 1982, he had been diagnosed with abdominal mesothelioma, a fatal condition, and the hospital would not give him a prognosis. When he got back to Harvard, he went straight to the medical library, and he found on reviewing the literature that he had eight months to live.
After about 15 minutes of shock, he began to think about what that meant, and he realised that the prognosis was in fact, arithmetically speaking, a median. All that it actually meant was that half the people in his condition would be dead by eight months and the other half would live longer than eight months. In fact, this median told him nothing about himself; it was an abstraction. To understand his own prospects, he had to look at the underlying data. When he looked at it, he found that quite a lot of people lived quite a long time beyond eight months in his condition. He said that
“all evolutionary biologists know that variation itself … is the hard reality … Means and medians are the abstractions”.
He asked himself, “What do I have to do to be one of those people who live a long time?” Speaking to oncologists, he learned that the universal response from all of them was that the key to survival in cancer was a positive attitude. To quote again briefly from the article,
“those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, and with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say tend to live longer”.
That is how he approached it, and I think we can learn a few lessons from this. I would like to run through what I think they are.
Baroness Royall of Blaisdon (Lab)
My Lords, what the noble Lord says and the article that he cites are very interesting. I am jolly glad that, for some people who have positive attitudes, they live a long time with their cancer. I know from personal circumstances, as do many other people around this Chamber, that we have had loved ones who have had very positive attitudes towards their cancer and they have died.
My Lords, I am not saying—nor was anybody—that a positive attitude on its own is going to save somebody from cancer. Professor Gould also benefited from the fact that he had the best medical treatment, and he went on various experimental courses. That was not my point at all. But people with a positive attitude, as I quoted, tend to live longer. I think that is scientifically demonstrable. I am surprised at the noble Baroness’s intervention.
I think we can learn some lessons from this. First, prognoses are not generally individuated. They are medians drawn from large data sets based on clinical trials. As Professor Gould said, if you get a prognosis of six months, the average person will think that means that they are going to be dead in six months, which, from a scientific point of view, is precisely the wrong conclusion.
Secondly, even when a prognosis is not based on a median but is an attempt by a doctor to give an individual assessment, it is very likely to be wrong. There are well-established studies on this. I will cite just one, which is Orlovic et al in 2023. It shows that, beyond 14 days, a clinician’s prognosis is almost always wrong. It is extremely unreliable. Within that shorter period of a week or two, a doctor and indeed an experienced nurse can very often say, with great reliability, that somebody is not going to last very much longer. But beyond that, an individual prognosis is of very little value indeed.
I think we all accept that for anyone who gets a prognosis, there is a degree of unreliability about it. Nobody believes that a six-month prognosis means exactly six months, or that eight months means exactly eight months, but we have a tendency to think that it is because we do not have enough knowledge—that with a bit more science and research, we could refine that prognosis so that it was more accurate. But as Professor Gould pointed out, the prognosis is merely an abstraction arising from the variability in the data. It is not that we cannot make the prognosis more accurate; it is that—
Baroness Royall of Blaisdon
Main Page: Baroness Royall of Blaisdon (Labour - Life peer)(1 week ago)
Lords ChamberMy Lords, I will speak to the main theme of this group, but particularly to Amendment 679 in the name of the noble Baroness, Lady Grey-Thompson, which I believe is essential if we are to safeguard the valuable work of faith-based hospices and care homes, along with other institutions, that have a conscientious objection to assisted suicide. I speak as a member of a family in which loved ones—more than one—have committed suicide, and I know the pain of what that word entails and means.
I note this particular part of Amendment 679:
“No company, charity, or other organisation shall be required, as a condition of receiving funding or any other benefit from any public body, to participate in, facilitate, or permit on its premises the provision of assistance in accordance with this Act”.
I am seriously concerned that, even after 13 days of consideration in this place, we have still not truly appreciated the scale of the crisis facing the care sector should this Bill fail to provide sufficient protection for conscientious objection. The noble and learned Lord indicated in January that he had discussions with Hospice UK on this matter, but this only scratches the surface of the consultation that ought to take place. A Care England survey in autumn last year found that 84% of care providers have not been consulted on the Bill or its implications. This has caused particular concern within the care sector.
Returning to my point, in lieu of clear protections it is clear that the sector stands on the brink. We cannot ignore the fact that, for many hospices and care homes, provision of assisted suicide on their premises is a red line that they will not cross. Mission Care is a Christian charity providing nursing and residential care in five homes across London and south-east England. Aidan O’Neill KC recently warned on its behalf that should such charities be
“required as a matter of law to allow for the provision of euthanasia or assisted suicide for residents”
within their care, they would
“no longer be able to operate in this sector”.
Mr O’Neill warns that this could
“precipitate a crisis in terms of local authority provision for care homes”.
A report from the Commons Public Accounts Committee just a couple of weeks ago found:
“The NHS is at risk of losing the huge value it gains from independent hospices beyond the provision of statutory palliative and end-of-life care”.
Given that, it is quite shocking that we are risking active withdrawal from the sector. On adult social care services, it has been estimated that faith-based organisations account for 10% to 15% of provision in the United Kingdom. This accounts for around 192,000 people. Should such organisations feel the need to withdraw, it has been estimated that it could cost £8.4 billion annually for the state to fully absorb that cost.
But it is not simply the money; it is also the special approach to care that will be lost. I will focus on Christian care homes, not because I believe they are the only group that recognises the inherent dignity of human life and they are at risk under the Bill— I believe that, deep down, we all in our conscience recognise that being is more important than having—but because, as a Christian minister for over 50 years, I have seen at first hand the distinctive benefits of what these Christian care homes can offer, and what I therefore believe is under threat from the Bill.
To take just one example of a special approach, in addition to the skills of medics and nurses, Christian care homes and hospices often provide the support of on-site chaplains and carers to treat the whole person in response to the total pain of dying. They can also offer a community that, contrary to our modern tendency to pretend that death does not exist, recognises that it does, as a part of the human condition—for we all must needs die, and it is appointed unto men once to die. Of course, that verse continues: “after this the judgment”.
In my time as a minister, it has struck me in visiting such care homes that, for many, they are much more than just the person’s own home. It is not simply a room within a facility; it is a family in which, in embracing the ethos set by the home, people can support one another in prayer, worship and investing in one another’s lives. Openness in conversation about death can be just one part of that, meaning that it is not an issue left exclusively to the person’s individual room.
That is why I struggle with the Government’s argument against care home opt-outs. The argument runs that institutional opt-outs can infringe Article 8 rights of the individual to choose to die in their home. It has been said that it would lead to stress and distress for terminally ill patients if they were forced to move. But this fundamentally fails to recognise the community aspect of life within many care homes, which is predicated on the protection of the ethos. In other words, we also must ask about the stress and distress that could be caused to other residents within the care home should things happen that fail to align with the values they have signed up for. After all, in a way it is their home too. To put it bluntly, many residents would feel a violation of the place they have chosen to be in if an assisted suicide were to take place. Many may have exercised their right under the Health and Social Care Act 2012 and the NHS constitution to actively choose a faith-based place of care because it aligns with their values, and they may not wish to be in an environment where assisted suicide is practised.
What about the impact on care staff? It is vital that we appreciate that for many of the staff working in the care sector, it is not just a job—it is a vocation. It is their life’s calling. Many offer their services free of charge. We should not just suppose that it is as simple as walking away and getting another job. I speak from the perspective of many Christian carers, not because the same depth of feeling is not true of others but because, as my community is a Christian community, I can relate to the depths of feeling. For many Christian carers, this is not a peripheral issue to their faith. Their desire to care and bestow dignity through understanding, support and relationship is driven by their belief that God is inviting man into a special relationship with Him through the giving of His Son, and has bestowed the ultimate meaning and dignity on life, which they must model in their respect, care and giving of themselves for others. In other words, it is rooted in the very heart of the Christian faith. I labour this point—recognising that this is not a perspective that many noble Lords may share—because it is vital that, in discussing conscience protection, we realise just how closely this issue draws to many people’s central identity and their expression of it.
In closing, I appreciate that the noble and learned Lord, Lord Falconer, who is responsible for this Bill, may say that he very much respects those convictions and that that is precisely why he has put protections in the Bill—so they can opt out of the most direct aspects of it. However, I question whether the current provisions are anywhere near sufficient. I do not believe that they are. Does the noble and learned Lord accept that it will be very difficult to extricate care home staff from involvement in assisted suicide were it to take place on their premises? For example, there will be organising appointments connected to the provision of assisted dying, assisting in the organisation and sending documentation connected with the provision of assisted dying, or accommodating the doctor who must remain with, although not necessarily in the same room as, the resident until they die. For many, given the centrality of this issue to their identity, these too are tasks that they may feel unable to perform. Without an explicit provision giving care homes, especially Christian or faith care homes, the option to not allow assisted suicide on their premises, I fear that we will see an exodus from that sector.
Baroness Royall of Blaisdon (Lab)
If my noble and learned friend were to introduce into the Bill the provisions that the noble Lord wishes, would he then be in favour of such a Bill?
I think that the noble Baroness will be under no illusion: I am personally against the Bill, because I do not believe in it. But if there is a Bill, we have to have any protection in it—that is completely different. Therefore, in the context of the suggestion that, because I am personally opposed to it, there should be no protections, I believe that, if the Bill were to pass, we should have the proper protections for people who have faith.