Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateBaroness Lawlor
Main Page: Baroness Lawlor (Conservative - Life peer)Department Debates - View all Baroness Lawlor's debates with the Department of Health and Social Care
(1 day, 10 hours ago)
Lords Chamber
Baroness Lawlor (Con)
My Lords, I added my name in support of the amendment from the noble Lord, Lord Evans of Rainow, for in-person assessment by the assisting doctor—the first assessment and the second. As has been said, how on earth can any doctor judge the mind—the physical and mental condition—of the person whom he or she may be ticking off to death without being in the room with them, particularly as this doctor may never have treated them in person?
I know that since Covid there has been an increase in remote consultations, but it is still the case that the average number of in-person consultations that a patient has with a doctor is three a year. In the case of consultation for assisted suicide, that such an appointment with the doctor is in person matters, as other noble Lords have said. We have heard a reference to telemedicine from the noble Lord, Lord Blencathra, but let us look at exactly what the British Columbia study reported of telemedicine: it limits the ability to observe non-verbal cues, subtle signs of distress and general context, and it fails to provide the emotional support, human contact and rapport essential to the therapeutic relationship between both parties in what is a shared decision. The study goes on to say that it provides limited evidence on long-term outcomes, especially with regard to hard data on assessment quality or adverse consequences. It goes on to say that ticking boxes rather than doing an in-person examination risks further streamlining to avoid an impact on scarce medical resources.
We know, for instance, from the Liverpool care pathway figures released in 2012 under the Freedom of Information Act, that two-thirds of the trusts had received incentive payments for meeting targets for using the pathway, amounting to around £12 million—that was in 2012. Telemedicine is also inappropriate for some patients: people with learning difficulties, autism, poor communication or verbal skills or mental health illness.
I conclude by asking whether the noble and learned Lord, the promoter of the Bill, disagrees with Professor Mumtaz Patel, President of the Royal College of Physicians, that face to face assessment really matters? She says:
“Face-to-face assessment is really important and then the wider decision-making has to be done as a team, through shared decision-making and with somebody who knows the patient well. It goes back to the continuity”.
Does the noble and learned Lord acknowledge the evidence of the “off camera” abuse example from the US state of Michigan? The noble Baroness, Lady Coffey, mentioned the difficulty of detecting abuse online at the very outset of the debate. In Michigan, a prosecutor noticed a domestic abuse victim being coerced off camera during a Zoom hearing. I hope the noble and learned Lord can reply to some of those points.
My Lords, I wonder whether the House will listen to the point made by the noble Baroness, Lady Gerada, which is that she is probably the only person in the House—and certainly the only person who has spoken this morning—who has had practical experience of assessing people. She spoke very well about the issues which have been raised this morning in relation to the Covid epidemic, saying that, “There was not a clinical or ethical necessity to see people face to face to make proper judgments”. I really want the House to accept that someone with that practical experience should be listened to.
I will make one other short point, which is that I am again surprised, frankly, by the number of people who have spoken this morning who, without, as it were, even mentioning the question of the circumstances of those who are terminally ill and are asking for assistance, talk so much about administrative procedures, the way in which a network might be formed, or the way in which technology could be used. Frankly, I would like to hear a little more from everybody who contributes about the circumstances and problems of those who are actually seeking assisted dying and who may well be those who, frankly, for one reason or another—because they are physically in a way that they cannot do it, or they are perhaps geographically remote or have other circumstances which prevent them being able to access a face-to-face agreement or a face-to-face assessment—none the less very much want an assisted death for their terminal illness. Their concerns should be the ones we primarily consider.
My Lords, there are just a few remarks I would like to make. We live in an age where it is hard to get a human to interact with any more. We lift the phone and speak to a voice that says that if you want one thing, press 1, and if you want something else, press 2. I fear that this is what we are heading for: if you want death, just press a button.
I have no doubt that if this legislation is passed as it is, in the near future we will be heading towards AI assessment procedures. My concern is not where we start in this process, but where it leads to and where it ends.
I am informed that, in the Netherlands, it has been proposed to use AI to kill patients in cases where doctors are unwilling to participate. Indeed, it is suggested that AI could be less prone to human error. Surely, in crucial assessments and decision-making processes for a person seeking assisted suicide, AI could not identify subtle coercion and assess nuanced capacity, bearing in mind the irreversible nature of the outcome. There are concerns about the risk of coercion or encouragement by AI. It should be noted that, with the newly developed AI functions and chatbots, there are already cases globally of individuals being coerced into all sorts of different behaviours, practices and decision-making.
Clause 5 allows doctors to direct the person
“to where they can obtain information and have the preliminary discussion”.
That source of information could be AI or a chatbot. Is there anything in the Bill that will prevent this?
AI undermines accountability. If the technology fails, who bears responsibility? Traditionally in the health service, the doctor bears responsibility. If AI is used, who bears responsibility?
Baroness Lawlor (Con)
My Lords, to add to what has been said, AI is based on large language models, which involve big datasets. I ask your Lordships to consider whether such large datasets, based on assessing a snippet of data to assist diagnosis, are a good way of assessing individual patients. They were not designed to assess individual patients. Every doctor will tell you that each individual case is different, and that diagnosis can vary. I am very grateful to the noble Lord, Lord Stevens, for sharing the results of the 98,000 cases that were assessed for accuracy. Therefore, I am not sure that it is a suitable tool to assess and diagnose individual cases.
My Lords, I approach this amendment in a largely exploratory spirit, because it raises an interesting and increasingly relevant question about the role artificial intelligence might play in the operation of legislation of this kind.
Much of what the Bill requires involves assessments of different natures. We have discussed a number of these at length in Committee, such as questions of capacity and voluntariness, and the presence or absence of coercion. These are judgments that are normally understood as being made by human decision-makers, who draw on their professional experience and have a direct interaction with the individual concerned. At the same time, this is 2026, and we are all aware that artificial intelligence is becoming more prevalent across the Civil Service and even in government departments. Sometimes, in relation to the latter, I am reminded of the Imelda Marcos line, “Better nouveau riche than no riche at all”—and perhaps better artificial intelligence than no intelligence at all. But the concern is that the use of AI is often incremental and not the result of a conscious policy decision or choice. In response to my noble friend, I am not aware of an entire judgment put together by artificial intelligence, but I am aware that sometimes, judgments have been found to dip into artificial intelligence to assist.
My Lords, I will speak to Amendment 75, which I have added my name to. It addresses probably the most decisive yet hardest to confirm clinical issue, and is central to the Bill.
Prognosis is not determined by diagnosis alone. Throughout my career as a doctor, I have seen many patients whose disease sounded on paper as though death was imminent, yet their course was significantly altered by evidence-based treatment and high-quality palliative care. In evidence to the Select Committee, the Royal College of General Practitioners stated:
“It is possible to give reasonably accurate prognoses of death within minutes, hours or a few days. When this stretches to months then the scope for error can extend into years”.
I agree with my noble friend that a 50% likelihood of a six-month prognosis is not reasonable.
Amendment 75 would ensure that, when we speak of an expected prognosis of six months, we do so in the context of treatment offered to them, in line with national NICE guidelines and tied to clinical reality. Without this safeguard, there is a risk that people who choose to participate in assisted suicide could start the process even where treatment is delayed, unavailable or not even offered, and where symptoms or fear of the future are instead driving a perception of hopelessness.
A three-month prognosis, as proposed in Amendment 444A, from my noble friend Lady Finlay, would be much more accurate, as there is an evidence-based assessment tool available through the continuing healthcare fast-track process. Noble Lords may be unaware that fast-track funding is available for those who have a rapidly deteriorating condition where they are approaching the terminal stage and the end of their life. This funding is used to provide much-needed nursing care, hospice involvement and support for families, and can be put in place usually within 48 hours.
NHS guidance notes that the fast-track funding tool is used when urgent care is required at the end of life. The most robust data currently available comes from a 2023 observational study published in the British Medical Journal Open Quality. It examined 439 patients referred for NHS continuing healthcare fast-track funding. The median survival for patients whose fast-track funding was approved was only 18 days, and a minority of patients were still alive at 90 days after referral, showing a much more accurate prognosis. The short survival time found in the study suggests that many referrals occur very late, sometimes limiting the ability to arrange preferred care settings. I think ignorance within primary care of this funding pathway and its usefulness in supporting people to stay at home during their last days and weeks contributes to its low take-up, and perhaps the rather unnecessarily large number of people who spend their last days in hospital.
Approval for fast-track funding helps clinicians by grounding prognosis—an already incredibly difficult task to predict—in nationally agreed standards rather than variable local practice. There must be absolute clarity that no one becomes eligible for assisted suicide because the system has failed them, especially regarding geographical variability in treatment options or lack of awareness of these treatment options.
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.
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.