Baroness Berger
Main Page: Baroness Berger (Labour - Life peer)
Lord Harper (Con)
My Lords, I thought we were taking the remote contributors first. If we are not, since there are amendments from my noble friend Lord Mackinlay of Richborough to which I have attached my name—he is unable to be here today; he sends his apologies and has asked me to speak to his amendments—I will speak to Amendments 223A, 223B, 223C, 495A, 771ZZA and 771ZA. For the avoidance of doubt, I am perfectly happy to take any interventions, if anybody wants to ask me any questions, if anything I am saying is not clear or if anyone wants to challenge my arguments.
The primary reason for these amendments, as was ably explained by the noble Lord, Lord Birt, is that the Bill does not really give the patient choice. It is designed to preference one option—that of seeking assisted suicide—rather than to help the patient navigate all the options that may be available to them.
There were limits on the way my noble friend could table his amendments. The advice that we received was that any amendments requiring a personal navigator to help secure or facilitate access to palliative, hospice or other end-of-life care, as an end in itself, were out of scope because the Bill’s collective purpose is provision for assisted suicide, not the wider delivery or co-ordination of end-of-life care. So amendments were admissible only where consideration of alternatives were explicitly tied to eligibility for or progression within the assisted suicide process. If anyone has any criticisms at this stage of the way that my noble friend’s amendments are drafted, I say that they are drafted in such a way as to fit with the advice that we received, so I will be perfectly happy to take criticisms of the drafting on the chin.
I start with a point that the noble Lord, Lord Birt, acknowledged in his opening remarks. He said that it was of great importance that there is universally available palliative care. He went on to say that, in his experience of talking to people, even where that palliative care was available, it did not always do the job that the person required it to. However, he skated over the fact that high-quality palliative care is not universally available. In the debates that we have had so far, to which the noble Lord, Lord Birt, referred, many of us have thought that, if high-quality palliative care is not available as part of the choice that you face, seeking assisted suicide is not the result of a proper, freely reached choice, because you do not have all the range of things in front of you. I think I am right in saying that, when the noble and learned Lord, Lord Falconer, was tested on that, he accepted that you have to make your decision based on the choices that are actually available to you. Many of us think we should actually be trying to make sure that everyone has access to that high-quality palliative care and understanding that should be part of this process.
The point of the amendments that we have tabled is to try to ensure that this navigator does not just have a conversation at the beginning; if you seek palliative care and it is not available to you in the normal course of events, this person could help you seek that, rather than being able only to help you seek assisted suicide. They can help you get the full range of choices that you might wish were available to you because, if they were, you might make a different choice. So that is the purpose of the amendments.
Baroness Berger (Lab)
This is a point of clarification about access to high-quality palliative care. It should also be about timely access, because we know that, even in the parts of the country where high-quality palliative care exists, around 100,000 people do not get it at a time that would amplify it and ensure that they get the maximum benefits.
Lord Harper (Con)
I am grateful for that intervention; it is a very good point. The importance of it is emphasised by one of the points that the noble Lord, Lord Birt, made in his opening remarks: that many people do not seek to make decisions on these matters until quite late in the process. If you were facing considerable pain as a result of your medical situation, not only might you not think about assisted suicide early on but, if it not available in your area, you may not have sought high-quality palliative care early enough. Again, that needs to be available at pace, as well as the choice of assisted suicide.
The second reason why I think these amendments are important is this. I do not know whether I am the only noble Lord to have thought this, but it does seem odd that what we are, or the noble Lord is, proposing here is a personalised service, I presume funded by the taxpayer—the noble Lord nods his assent—which would support somebody in a very personal, individual way to seek one particular outcome. But as far as I am aware, unless something happens in the National Health Service that I am not aware of, we do not offer a personal navigator to help somebody with their journey through seeking medical treatment that will actually help them live and live well, and it just seems to me a slightly odd sense of priorities that we are proposing to put in place a service that is only available to help somebody die.
Lord Goodman of Wycombe (Con)
My Lords, there is an unreality about this debate that gives rise to a question for the sponsor of the Bill and the Minister. The unreality is this: the noble Lord, Lord Birt, has made the case for his amendments, and my noble friend Lord Harper and others have made the case against them, but there is hung on this whole debate an assumption that the NHS will deliver assisted dying. I remind the Committee that there is no guarantee of that in the Bill.
If noble Lords would kindly turn to Clause 41(4), they will see that the only reference to the National Health Service is:
“Regulations under this section may for example provide that specified references in the National Health Service Act 2006 to the health service continued”,
et cetera. That is the only reference to the NHS in the Bill. We do not know whether the NHS will or will not deliver assisted dying services. It is an extraordinary weakness in the Bill.
Baroness Berger (Lab)
The noble Lord and I sat on the Select Committee on the Bill. He may recall that I pressed the Minister specifically on this point: to clarify who would be delivering an assisted dying service in this country should the Bill be accepted. Only after a number of questions did the Minister acknowledge that it was the Government’s intention that the NHS would commission an assisted dying service. He could not clarify or confirm whether it would be delivered by the NHS, the private sector, the voluntary sector or charitable organisations and, if it was the private sector, whether it would be allowed to generate any profit. We are still unclear. It is very challenging to us, and I hope the Minister in her response might be able to give us further clarity on that important point.
Lord Goodman of Wycombe (Con)
The noble Baroness, Lady Berger, is quite correct. That is exactly what happened in the Select Committee. For my sins, I sit on a surfeit of committees, including the Delegated Powers Committee, which drew attention to this very deficit in the Bill. So the question for the noble and learned Lord, Lord Falconer, is: since the Minister was questioned in the Select Committee by the noble Baroness, Lady Berger, in the weeks that have followed, has he had any guarantee from the Government that they will ensure that the Secretary of State by regulation ensures that the NHS delivers voluntary assisted dying services? When the Minister replies to the debate, can she cast some light on this matter so that we know whether or not the proposal that the noble Lord, Lord Birt, has put forward and my noble friend has opposed really has any basis in reality?
Baroness Fraser of Craigmaddie (Con)
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.
Baroness Berger (Lab)
It may aid the Committee to know that, before Christmas, the Minister in the other place indicated via a Statement that the Government were currently developing a palliative and end-of-life care modern service framework for England, and that it is planned publication date was the spring of this year. In that context, I hope that the Government and the Minister here will hear the calls from people—both those who support the Bill and those who do not—that it would be very helpful to us all in the deliberations on this Bill if the framework, its details and funding were provided to this House as soon as possible.
Baroness Coffey (Con)
On the point the noble Baroness made about funding, unfortunately the Minister has now communicated that it will not happen until autumn 2026, which any former Minister knows means 24 December.
Baroness Berger
Member’s explanatory statement
This amendment and others in the name of Baroness Berger would mean that someone is only eligible for assistance in ending their own life under this Act if their clear, settled and informed wish to end their life is because of their terminal illness and not for any other reason.
Baroness Berger (Lab)
My Lords, I shall speak in support of Amendments 44, 313, 341, 452, 511 and 580 in my name, which are distinct from the group that we have just addressed in a very quick fashion but are a variation on the same discussion. My amendments seek to make a simple but substantive clarification to the Bill, which is that assistance in ending life should be available only where a person’s clear, settled and informed wish to die arises because of their terminal illness, not for any other reason.
As drafted, not only does the Bill not require a causal link between a person’s terminal illness and their request for an assisted death, but it does not actually specify any reason at all. That is a significant difference from assisted dying laws in many other jurisdictions, and that includes some of the countries whose laws have been presented to us as comparable to the Bill and as proof that we can have confidence in it.
Under New Zealand’s End of Life Choice Act 2019, not only must a person have a terminal illness likely to end their life within six months but they must be in an advanced state of irreversible decline and capability and be experiencing unbearable suffering that cannot be relieved in a manner that the person considers tolerable. In Spain, which we are told is a model for the new voluntary assisted dying panels, the requirement for an assisted death in Spanish law is intolerable suffering.
By contrast, our panel will not have to investigate or even ask why the person has chosen this route, as long as they appear to mean it. As long as the person fulfils the other requirements, medical professionals and the panel will not be expected to ask whether the person may be motivated not by the disease itself but by, for example, the shock and despair that follows a terminal diagnosis, the stress and anxiety that come with the cost of care, the sense of guilt of being a burden on family and partners, or the family breakdown that sadly can often happen next. Perhaps the person has previously struggled with suicidal ideation even before they were diagnosed with a terminal illness. None of these examples would rule the person out of eligibility under the Bill.
That is a profoundly concerning weakness in the Bill’s construction, and one that fundamentally undermines the claim that it has “the world’s strongest safeguards”. It does not have one of the most common and obvious safeguards there is, which rightly exists in other countries. Indeed, the 2012 Commission on Assisted Dying, chaired by my noble and learned friend Lord Falconer, came to the conclusion that
“it is essential that any future system should contain safeguards designed to ensure, as much as possible, that any decision to seek an assisted suicide is a genuinely voluntary and autonomous choice, not influenced by another person’s wishes, or by constrained social circumstances, such as lack of access to adequate end of life care and support”.
My amendments go to the heart of the balance that the Bill is trying to strike and which many of us fear may not be possible: that is, to allow dying people to decide when to end their lives but without taking any steps towards the encouragement or normalisation of suicide. This is not a theoretical concern. Make no mistake, the demand for assisted dying for other reasons does exist, and will be seen all too clearly if the Bill passes as drafted. In jurisdictions that have introduced assisted dying without a requirement for a terminal illness at all, or which have afterwards expanded beyond it, there are documented cases of people seeking to end their lives not because they were dying but because they could not access the care, housing or social support they needed to live well. That cannot be the path that we take here.
We must ensure that our law is rooted in compassion, yes, but also in moral clarity about the need to prevent suicide. Great strides have been made in doing that in recent years, both within the medical profession and in other public services. In the Select Committee on the Bill, we heard about the importance of this from witnesses, including the chief executive of the mental health charity Mind, and the Royal College of Psychiatrists. We must have confidence that, if the Bill passes, it will not be at the cost of that vital progress.
Baroness Berger (Lab)
I thank the noble Lord for giving way. It might be helpful, in the context of this conversation, for noble Lords to be aware that the data that the Department for Work and Pensions has on people who are in receipt of a benefit that comes during the six months towards the end of life shows that 23% of people who were given a six-month prognosis are still alive three years later.
Lord Hamilton of Epsom (Con)
If I understand the noble Baroness correctly, that is 23% of people who die well beyond the six-month sentence they have been given. That is an extraordinarily large figure, and I am grateful to her for it. I think that makes us question the whole basis of this Bill which is talking about medical diagnosis that gives people a limited life but turns out to be wrong. This could be very disturbing, if we are going to go ahead on the basis of information that could be wrong in quite as many cases as that.
Lord Falconer of Thoroton (Lab)
I do not want to commit myself to where it will be. It will come somewhere, but I assume the best place for it, subject to advice, would be either with the co-ordinating doctor or the independent doctor, or the panel or all three, having to ask why.
Baroness Berger (Lab)
My Lords, I also extend my thanks to the staff of the House for all their diligence in looking after us, particularly at this late hour. I thank all those who have participated in this important debate which, as I said at the start, goes to the heart of what this Bill sets out to do. While I am mindful of the time, I want to acknowledge the fact that there are a number of colleagues who wanted to participate in this debate but were prevented from doing so because of where they live across the UK. I myself would not be here right now if it was not for the fact that I am leading on this group of amendments. I would be with my family, acknowledging the Jewish Sabbath, as I do on a customary basis every single week.
I think it is worth rapidly reflecting on the contributions which build the case for these amendments. We heard from the noble Lord, Lord Shinkwin, about his lived experience of being told that he was going to die, and he is obviously still with us—we are delighted he is still with us—decades later. The noble Lord, Lord Hamilton of Epsom, talked about the challenges of a six-month terminal prognosis and errors in diagnosis. That point was echoed by others during our debate. The noble Lord, Lord Blencathra, talked about the challenges of non-medical motivations dominating the reasons for choosing an assisted death in some other jurisdictions, which really is the prompt for the amendments that we have discussed this afternoon. The noble Lord, Lord Carlile, said that the capability to have an assisted death alone should be due to the terminal illness itself. It was illuminating to hear from the noble Lord, Lord Deben, about his socialist ideals. However, the context in which we consider this Bill is that we are not just individuals; we exist within a society.
I am very grateful to the noble Baroness, Lady Cass, who corroborated how these amendments in a medical context ensure that the motivations for an assisted death are concrete, clear and defensible. I listened closely to the challenge from the noble Lord, Lord Moore of Etchingham—I do not think he is in his place. He asked how these amendments will make a difference, and this was a point echoed by my noble and learned friend. These amendments cement the principle of this Bill. It makes very clear to the public that it is your terminal illness that has to be the reason why you are pursuing an assisted death. Currently, the requirement is that doctors have to assess the patient and, instead of just establishing a clear, settled and informed wish to die, they must, via these amendments, establish that the terminal illness is the reason. That is not to say that there is no risk of someone being misled—that is the inherent risk to this entire Bill, in particular because of the lack of training that will be available to doctors as set out currently in the impact assessment.
The points made by the noble Lord, Lord Harper, showed us how these amendments connect to meeting the public’s expectations of this Bill. The noble Baroness, Lady Finlay, made it clear that the motivation to have an assisted death should be because of terminal illness and we should set that out in the Bill. This is yet another issue that is not clear and we need those clear boundaries. I am grateful to the noble Baroness, Lady Grey-Thompson, for setting out some real-life case studies and examples of why these amendments matter.
I believe that this debate, and, indeed, how my noble and learned friend set out his conclusion just now, has confirmed that there is a real difference at play in how we understand what the Bill sets out to do. For some—I hope I am not mischaracterising, but this was certainly in the contributions of the noble Baroness, Lady Blackstone, and alluded to by the noble Lord, Lord Markham, and my noble friend Lady Royall—it is about autonomy: allowing those who are already dying to exercise choice over the timing and manner of that death. For others, like me, it is primarily about compassion in seeking to prevent or minimise the suffering associated with their illness. These are related positions but they are distinct. My amendments have sought to establish which is the position of the Committee.
For myself and, in particular, those with a strong interest in mental health and suicide prevention, it is the latter that offers the stronger consideration for introducing a system that I am concerned is fraught with obvious risk to the vulnerable and those at risk of pressure. That means that we must do more than simply establish that a person is terminally ill and that they genuinely wish to end their lives; we must have a means of establishing the link between those two questions so that we do not open the door to having the state, which should protect vulnerable people, instead becoming complicit in their premature deaths.
None of these amendments, I believe, prevents there being additional motivations for seeking an assisted death. I intend to revisit this fundamental issue at the next stage and, indeed, through my engagement with this enormously consequential legislation. I will certainly consider the Government’s assessment of the wording as set out by the Minister, and I hope that the sponsor will also consider the profound concerns that have been raised during the course of the debate when we return on Report. For now, I beg leave to withdraw my amendment.