Terminally Ill Adults (End of Life) Bill
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Earl Howe (Con)
My Lords, in the interests of time I do not propose to summarise the many points and questions that have been raised in this debate. However, I wish to speak briefly to Amendment 320A in the name of my noble friend Lord Wolfson. The amendment seeks to set the presumption that the first assessment by the co-ordinating doctor
“must be undertaken in person, except in circumstances where this is not reasonably practicable”.
It is plain from everything that we have heard in the debate that the first assessment is a pivotal moment in the process set out in the Bill. It is the point at which a co-ordinating doctor must satisfy themselves not only of the diagnosis and prognosis but of the patient’s capacity and will and, crucially, the absence of coercion or pressure, as set out in Clause 10. These are human judgments that depend not simply on what a patient says but on the way that they say it, on physical cues and on the broader context in which the conversation takes place.
I listened carefully to the noble Baroness, Lady Finlay, in particular, as I did to other noble Lords, and an in-person assessment undoubtedly allows a clinician to observe matters that may not be apparent on a screen—for example, who else is present in the room, whether the individual appears comfortable speaking freely or whether there are signs, however subtle, of hesitation or external influence. At the same time, I suggest that we need to be patient-focused as well as doctor-focused, which is why my noble friend’s amendment seeks to recognise practical realities. There will surely, from time to time, be circumstances, perhaps in late-stage illness when a person may be in acute distress, where an in-person assessment is genuinely not possible. The reasons for that could be several, but in those cases we need to ask ourselves whether a live video and audio link would be preferable to a delay, or even a complete exclusion from the process.
I emphasise that the amendment is a probing one. If we decide that provision should be made for certain cases then that would surely be a classic area for guidance or codes of practice, but the key test in every instance would be what is reasonable in the circumstances. My noble friend wants to be clear that this amendment is about setting the right default for arguably the most consequential clinical judgment in the entire scheme of the Bill, while preserving professional discretion in response to the needs of the patient where circumstances require flexibility.
I have deliberately spoken in general terms when talking about what might not be reasonably practicable. The question is really the one posed by the noble Baroness, Lady Hayman: how rigid do we wish the Bill to be in prescribing how the system should work? I hope the noble and learned Lord, Lord Falconer, could set out his vision of how this mechanism will work in practice and how he will ensure that the safeguards that we all want to see can still be maintained if an in-person assessment is not possible.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am grateful to all noble Lords for their contributions to this debate. As ever, I will limit my comments to amendments on which the Government have major legal, technical or operational workability concerns.
First, I draw the attention of the Committee to operational workability concerns about Amendments 60 and 65. Under Amendment 60, professionals delivering the service would be responsible for checking whether the person was in England or Wales on multiple occasions before carrying out their duties, even if it had been confirmed that the person was ordinarily resident in England or Wales. That would place a significant burden on professionals delivering an assisted dying service.
Baroness Merron (Lab)
I understand the point, but it is about verifying that.
Lord Falconer of Thoroton (Lab)
My Lords, I express my gratitude to everyone who has taken part in the debate. I make special mention of the noble Baroness, Lady Smith of Newnham, and the noble Lord, Lord Polak, who spoke about the death of their father and mother. Like everyone else, I am grateful for what may have been something that was quite difficult to contribute to the debate. I hope I have not left out anyone else out who has done that.
These amendments fall effectively into two categories. The first is the England and Wales category—what do you have to be in England and Wales to do?—and, secondly, and separately, in what circumstances is a face-to-face meeting between either the patient and the doctors or the patient and the panel required?
I will deal first with the position of England and Wales, raised by Amendment 60, from the noble Baroness, Lady Coffey. Currently, under the provisions of the Bill, the first declaration made by the patient, the second declaration made by the patient, the first assessment of the patient, the second assessment of the patient and assistance being given to the patient all have to take place in England and Wales. There was a range of other things that the noble Baroness wished to take place while the patient was in England and Wales—for example, switching from one doctor to another, which is a process. For my part, I think the Bill has broadly got right when you have to be in England and Wales. Having listened carefully to what the noble Baroness has said, I am not minded to suggest an amendment in relation to that, and I note that it was not picked up as an issue by other people.
The face-to-face issues were much more what the Committee, if I may say so, was interested in through the course of this debate. The effect of the debate has been, in effect, to identify four possibilities. First, Amendment 65 wants each of the occasions, namely the two doctors and the panel, to always involve a face-to-face meeting. Secondly, there should be a face-to-face meeting unless there are—I use this phrase without intending to pick up all the amendments—exceptional circumstances or practicability issues. Thirdly, the third amendment from the noble Lord, Lord Blencathra, which he referred to, is that there should be, to use his language, a “statutory protocol” defining where there can be remote meetings, accepting that the norm is face to face. Fourthly, we could simply rely on the existing provisions of the Bill, which is that codes of practice can be issued by the Minister under the various provisions of the Bill saying when face to face is appropriate and when it is not.
The testimony—that is what it felt like—given of cases where remote has gone wrong have enormous power and I think we are all aware of circumstances where face to face will lead to much greater and better communication. The other side of the coin, which was referred to by the noble Baronesses, Lady Pidgeon and Lady Hayman, my noble friends Lady Jay and Lady Blackstone and the noble Earl, Lord Howe, is that there will be circumstances where, if you insist on face to face, you are, in effect, excluding some people from this right when they should have it. There are arguments on both sides.
I come away with the strongest possible feeling that the Committee thinks that face to face where possible is best but that there will be circumstances where it is not appropriate. That brings me to my third and fourth possibilities. It is wrong and dangerous to try to use a phrase such as “reasonably practicable” or “exceptional”; more is required and guidance should be given. This is not a criticism—it is a congratulation—but I do not think the words “statutory protocol” are right, but I get from what the noble Lord, Lord Blencathra, is saying that he wants something that has the force of regulations or something similar that says, “This is what we have in mind”. Whether that is a code of practice or a statutory protocol, I am not sure. I am sure it is not what is called a protocol, but it might be something quite like that. I think the right course for me is to go away and bring back something that satisfies the Committee that there will be something—a statutory protocol or a code of guidance—that indicates when face to face is appropriate or should be the norm, but gives the circumstances where it would not be, because I get the sense of anxiety about that. I hope, in the light of that approach, noble Lords will feel able to withdraw or not to press their amendments.
Baroness Merron (Lab)
My Lords, I thank noble Lords for their contributions on this debate on artificial intelligence. It follows the debate yesterday, as referred to by the noble Lord, Lord Deben. The purpose of Amendment 66, tabled by the noble Baroness, Lady Coffey, is to prohibit artificial intelligence from being used to carry out functions under any section of or schedule to the Bill. This amendment is likely to have major workability impacts that could render the Bill unworkable and/or undeliverable.
While this is a policy matter, I will pick up points and considerations that have been made on the use of AI in practice. Broadly, artificial intelligence is absolutely in use in a number of pathways. It was indeed referred to in the 10-year health plan, and the ways it is being used include imaging and diagnosis. As this amendment stands, it would preclude an improvement in speed and in quality of care for patients.
Following my comments on workability, the amendment would incur an administrative burden that is likely to increase over time. AI is increasingly used across the economy and public services, including in the NHS, as set out in the 10-year health plan. The effect of the amendment as drafted is very broad in prohibiting this use of AI from carrying out any functions under the Bill. In the future, when AI is integrated into NHS systems across the board, it may well be difficult or even impossible to quarantine systems that are used for functions under the Bill. Additionally, this may risk creating a parallel system where voluntary assisted dying services are left behind and are potentially less safe for patients.
Lord Falconer of Thoroton (Lab)
I am grateful to the noble Baroness, Lady Coffey, for raising artificial intelligence. There was, broadly, a consensus around the Committee, which the noble Baroness supported, that the amendment is much too blunt, but as she said, fairly, it gives us an opportunity to talk about AI. I will also pick up the right reverend Prelate the Bishop of Hereford’s contribution; he rightly said, as has been echoed around the Committee, that there have been huge benefits for patients from AI.
I think four concerns were raised during the debate. The first was: will AI affect decision-making? I think the underlying point there is that we do not want machines to make the decisions that are referred to in the Bill; we want human beings to make them. In particular, the decisions I have in mind are the decision of the first doctor, the decision of the second doctor, the decision of the panel, and the decision of the doctor, at the point that the assistance is being given, that the conditions are still satisfied. Everybody around the Chamber wants that to be decided by a doctor or a panel, depending on which it is, and I completely and unreservedly endorse and accept that.
Does that need to be made even clearer in the Bill? I will consider it, but I do not think that it does. The acid test for me is that if you fail to comply with your obligations as a doctor or as a panel, you can go to prison for up to five years. It is very difficult to imagine how you could put a machine in prison, so it is pretty clear that these decisions must be made by a human being. For my part and for everybody who supports the Bill, that must remain the position.
The second concern is advertising, which the noble Baroness, Lady Berridge, referred to. She is absolutely right. I have made it clear that I will bring forward amendments. Those amendments, which are almost finally drafted, make provision specifically in relation to digital advertising—they do not specifically refer to AI, but we need to address that in the advertising provision. I will lay those amendments so that the House can consider them.
The third concern is slightly generalised, which is that AI is very persuasive, particularly in persuading people to do things that they do not necessarily want to do. The first thing on that is that there is a wider societal requirement to address the pervasive impacts of AI in a whole range of things. We should all try to contribute to that. More focused on this is the question of the safeguards in the Bill, because they then become incredibly important. In particular, the safeguards require that there is doctor-to-patient discussion in relation to the decision for that patient, and they are specifically required in the preliminary conversation, the first conversation and the second conversation. It is those safeguards that one must see as the antidote to the persuasive aspect of AI, but I completely accept what people said on that.
The fourth issue, which was touched on very briefly, was the operation of devices. That, I think, referred to the fact that quite a number of medical devices can be operated by, for example, the blink of an eye or something quite minor. Again, that needs to be properly safeguarded. Those may not necessarily be AI problems but problems with other sorts of developments in technology.
I thank the noble Baroness, Lady Coffey, for raising this. We need to consider all the points she made. At the moment, apart from the advertising amendment, which I will bring forward, I am not sure that it requires amendment to the Bill.
Baroness Merron (Lab)
My Lords, I will be very brief. The Government do not have any major technical or operational workability concerns on the amendments tabled by the noble Lord, Lord Sandhurst, and the noble Lord, Lord Harper, which were originally tabled, as we heard, by my noble friend Lord Hendy. To make the usual point, as noble Lords will be aware, these amendments have not had technical drafting support from officials, so further revision and corresponding amendments would be needed to provide consistent and coherent terminology throughout the Bill.
Lord Empey (UUP)
My Lords, I raised the point that the state could be liable in cases where the companies people worked for were nationalised or owned by the state. It seems not unreasonable that in due course the Minister could express a view on behalf of the Government, because the Government could be directly—and financially—affected by the consequences of the Bill.
Baroness Merron (Lab)
I appreciate the point the noble Lord is making—and indeed the points that the noble Earl, Lord Howe, made. However, as your Lordships’ House knows, I correctly restrict myself to commentary on what is before us. Should the Bill include this amendment, we will then respond at the appropriate time.
Lord Falconer of Thoroton (Lab)
My Lords, there are effectively two entirely separate issues raised by this group of amendments. The first is whether we should extend the current eligibility to people who have an inevitably progressive illness or disease to somebody who is terminally ill because they have injuries—for example, from a car accident—that might make them die within a specified period.
I was not sure whether the noble Lord, Lord Harper, was pressing that as an amendment, because the thrust of his remarks was much more focused on the effect on the Fatal Accidents Act. Whatever his position, I am afraid that I am not in favour of that amendment because the whole Bill has been put together and the argument for it has been based on people who are terminally ill. That is very different, for a whole variety of reasons mentioned by people, from somebody who is the victim of an injury.
I can see that people might say there was considerable moral equivalence, and the noble Lord, Lord Hendy, was right to say how persuasive he was when I spoke to him in relation to it. However, my clear view is that we should not extend the Bill beyond its current eligibility. I should also make absolutely clear that the wording of the Bill is clear; there is no prospect whatever that a court could construe the words “illness” or “disease” as meaning “injury”. What we send from Parliament will be the way it is read.
Baroness Lawlor (Con)
My Lords, I will speak to Amendments 72 and 80 in my name. I will not say anything about autonomy other than to mention to the noble Lord, Lord Pannick, that although it is a philosophical concept which was drafted in recent centuries, academic philosophy is very divided on how worthwhile it is as a concept.
I begin with my Amendment 80, which would substitute some detail for the very vague requirement that death within six months can reasonably be expected. We have already heard in the Committee, from everybody—not only today but on other days—that certain diagnosis is a very inexact science, and that diagnosing someone as having six months is very inexact.
We have heard from the noble Baroness, Lady Finlay, in opening, that conditions can differ, patterns can differ and patients can differ—we also heard that from the noble Baroness, Lady Hollins. Therefore, each patient must be assessed on an individual basis.
Against that, my Amendment 80 proposes that the difficult job of assessment is done by two consultants specialising in the relevant area, and it pins down that the expectation should instead be an 80% probability. If the sponsors are in earnest that those eligible really should be those who are within six months of death, they should be pleased to accept an amendment that tries to overcome the inexactness of such judgments by requiring confirmation by two of the most qualified experts in the area, and they should accept that an 80% likelihood is what, in this context, can reasonably be expected.
I move on briefly to Amendment 72. The Bill already refuses eligibility for assisted suicide when a condition that in itself is diagnosed to lead to death within six months can be reversed. My amendment takes the next logical step by limiting eligibility to cases where the condition not only cannot be reversed but cannot be relieved, controlled or ameliorated; I am adding to what has already been proposed in that group. The amendment aims to substitute a constructive, optimistic approach to treating illness, rather than one that writes off the patient and points them on the path to suicide.
That requirement—that, when steps can be taken to relieve, control or ameliorate a disease, the patient can no longer be considered for assisted suicide—will remove many otherwise difficult cases from this murky area and allow the mechanisms to operate as best they can for those for whom the Bill, on its face, intends them: people whose deterioration is inevitable.
There is an even more pressing reason than those two to accept this amendment: unless we positively exclude from eligibility patients whose condition could be relieved, controlled or ameliorated, we set up the conditions in which the relief, control and amelioration of terminal illnesses will become increasingly rare. We have heard of some remarkable instances today, not least from the noble Baroness, Lady Campbell of Surbiton—whom I am delighted to see back. Why would an overburdened health service try to give some extra months of life, give a higher degree of relief of pain, or ameliorate or arrest the progression of the disease, when it is so much easier to direct the patient, either implicitly or by expectation, towards assisted suicide?
What about relatives—even no more than ordinarily unscrupulous or greedy ones, or merely selfish ones—for whom the speedy death of their loved one is likely to seem desirable? We may also reasonably fear an overzealous state service committed to the task of accelerating the pathways of such unfortunate cases to their ends. My amendment guards against those consequences—some of the worst of a Bill so rich and varied in its capacity for harm.
Lord Frost (Non-Afl)
My Lords, I rise to introduce Amendment 84, which has already been touched on by the noble Lord, Lord Farmer. I am grateful to, and thank, the noble Lord, Lord Carter of Haslemere, for his support.
This group, as we have heard, is primarily about the definition of terminal illness. My amendment in this group touches on a somewhat different but related and important point, which is whether the terminal illness criterion—the existence of terminal illness—is in itself sufficient as a criterion. I am doubtful that it is, and that is why I have proposed this amendment.
As your Lordships know, there are two different models around the world for the kind of law that we are considering. Both include a terminal illness criterion. One type also has a suffering criterion, and that is the model used, as has been said, in Australia, New Zealand and elsewhere. The second type does not; it rests entirely on the concept of autonomy—the belief that if you know or have been told that you are going to die soon, you have the right to ask the state to allow you access to assisted suicide. I will say more about this autonomy point in a moment.
To state the obvious, the Bill is based on the second of those two models, but one of the problems is that much of the campaign for it is based on the first model—the assumption of a suffering criterion. Hence my amendment would introduce the concept of unbearable suffering that could not be relieved by treatment. It is probing; it aims to test the reasoning behind the preference of the Bill’s supporters for that type of model.
My amendment would do four things, and some of what I am about to say has already been touched on, so I will be brief. First, it would align the legal test in the Bill with the public justification for the Bill. It is clear that the campaign around the Bill bases much of its work on the need to deal with suffering and, if suffering is the moral foundation offered to the public, it should be in any eventual statute. It is clear from all the discussion around the Bill that many voters believe it already is in the Bill, and it should be.
Secondly, it would stop drift and the slippery slope. The problem here is that, if the real justification for access to assisted suicide is autonomy, what is the justification for the robustness of the six-month limit? We have heard that provisions in the Bill are vulnerable to court rulings, judicial review and the existence of the ECHR—although there is, of course, a way of resolving that particular problem—other broader principles and specific legislation such as the Equality Act. A suffering-led criterion would help Parliament to draw and defend a clear and principled line.
Thirdly, it is relatively—not totally, but relatively—easy to identify unbearable suffering. As has been noted, it is usually obvious from demeanour and body language when there is frequent and unbearable pain. This helps distinguish between qualifying and non-qualifying reasons for access to assisted dying, such as social pressures. This is vital given that we have already heard from the sponsor how widely drawn some of those criteria might ultimately be.
Fourthly, it has to be noted that, with a small number of exceptions, most other jurisdictions that use these laws have a suffering criterion: Australia, the proposed legislation in France, now happily stalled for the time being, the Netherlands, Belgium, Luxembourg, Spain, Portugal, the rejected legislation in Slovenia, New Zealand, Colombia and so on all have a suffering criterion, and for a good reason.
He has touched on it before, but when the noble and learned Lord, Lord Falconer, responds to the debate on this group, perhaps he could explain in greater depth why he is so insistent on an autonomy-only Bill, whether he recognises any limits on autonomy, and whether and why he is content to rest on autonomy as a justification while allowing campaigners to make a case based on suffering.
I want to say a few words on the justification of autonomy because it is so crucial and the Bill’s sponsors have been clear on the importance they attach to it. The noble and learned Lord, Lord Falconer, has been quoted before but it needs repeating:
“the essence of the Bill is autonomy. You have a choice … Once you satisfy that requirement—obviously, the safeguards have to be complied with—that is the essence of the Bill. It is autonomy”.
We heard from the noble Lord, Lord Pannick, who is not in his place, about the importance of choice in this area. That is really another way of expressing the same issue.
Proponents of the Bill have, at times, been perhaps a little dismissive of those of us who have religious convictions and suggest that we should not bring them to this debate. But I suggest that the belief in autonomy is also an a priori conviction with no more or no less right be heard unchallenged. It is surprising perhaps to find Ayn Rand-like views of the importance of individual autonomy emanating from the Labour Benches. It is a view that one can have, but I suggest that very few people do in fact have such views in practice.
Captain of the King’s Bodyguard of the Yeomen of the Guard and Deputy Chief Whip (Baroness Wheeler) (Lab)
The noble Lord is over the 10-minute limit. Could he please wind up?
Lord Frost (Non-Afl)
I am coming to my conclusion. It is somewhat safer with the two criteria of autonomy plus life expectancy and of unbearable and irremediable suffering. It limits the scope of the moral and legal change, or regression as I would see it, that we are undertaking here. That is why I have tabled Amendment 84 and why I think it is so essential.
Lord Carter of Haslemere (CB)
My Lords, I added my name to Amendment 84 since I think the noble Lord, Lord Frost, has struck gold with this amendment. Requiring
“unbearable suffering … which cannot be relieved by treatment”,
raises four critical issues at the epicentre of the Bill. First, his amendment exposes the total unreliability of a six-month prognosis of a terminal illness, as we have heard from numerous noble Lords. Trying to predict life expectancy is a hopeless exercise, especially when medical advances are improving at such a phenomenal rate. As the noble and learned Lord, the sponsor, said in relation to a prediction of six months to live, we are not dealing with certainty. I am with him on that.
Let me give the Committee an illustration from a real case. I know of somebody who was given a 5% chance of living for 10 years because he was suffering from an advanced aggressive cancer. It is not exact, but a 5% chance of living for 10 years approximates broadly to a reasonable expectation of dying within six months. That was 21 years ago and, as far as I know, I am still here—noble Lords will correct me if I have got that wrong. It does sometimes feel slightly otherworldly, listening to these debates.
Secondly, the requirement in Amendment 84 for unbearable suffering that cannot be relieved by treatment would have the obvious merit of bringing the effectiveness of palliative care into play, which is not currently the case as the Bill stands. As we know, the experts say that palliative care relieves pain in most cases and can help people who want to die to want to live. That is why a full assessment by a palliative care specialist is so important, as earlier amendments sensibly proposed. But the noble and learned Lord has said he is
“incredibly opposed to unbearable suffering as the root”
of this Bill. His view is unsurprising since the effectiveness of palliative care would significantly reduce the Bill’s impact.
So the noble and learned Lord falls back on the personal autonomy argument, telling the Select Committee that the essence of the Bill is autonomy—you have a choice, it is autonomy—and it would give people the option of an assisted death if they have simply had enough of life. This is the third issue that would be resolved by Amendment 84. Should the National Health—health—Service really be assisting a person to kill themselves if they have simply had enough of life, whether or not they are in pain and whether or not their feelings relate to their terminal illness? Is that what a health service should be doing? That starts to look very much like assisted suicide.
Fourthly, I respectfully suggest that the noble and learned Lord gets on the Clapham omnibus and asks anyone who supports assisted dying the reasons why they do so. Overwhelmingly, they will say that people should not have to suffer unbearable suffering. Yet, astonishingly, you will not find the words “pain” or “suffering” anywhere in the Bill. I read it word for word last night at great length to check that point. I could not find those words. Without any reference to unbearable suffering, there will be a massive disconnect between the public’s expectation and the Bill’s contents.
Let us be clear: the vast majority of the public are not on the edge of their seats watching our deliberations. Very few indeed will have read the Bill. They will therefore have a view of the Bill based on the common-sense assumption that people seeking an assisted death will be suffering unbearable pain. The compelling amendment from the noble Lord, Lord Frost, injects that common sense into the Bill by providing for that, and I heartily support him and Amendment 84.