Terminally Ill Adults (End of Life) Bill Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill

Baroness Gerada Excerpts
Lord Rook Portrait Lord Rook (Lab)
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I absolutely agree with that. The reason why the doctor is able to do that is because he gives consistency and continuity of care. He does not see patients on one occasion on one big issue, but is able to travel with them in a longitudinal relationship, and that gives him the ability to make those decisions.

Baroness Gerada Portrait Baroness Gerada (CB)
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As a GP, I understand the sentiment behind this amendment and the power of continuity; in fact, it was what my maiden speech was about yesterday. But modern general practice works in multidisciplinary teams. We have nurse prescribers, pharmacists and physician associates. We also work with other team members, especially with those at the end of their life, such as palliative care teams and oncology teams. While I understand the need to have a GP involved, I think it is rather reductive. We deliver continuity in today’s world through our medical record, which is a complete record of the individual from cradle to grave. I would say it is with the primary healthcare team that the individual has a relationship rather than with an individual.

On a point of clarification, the average patient over the age of 75 consults their GP team—the primary healthcare team—around 10 times per year, so I do not recognise the figure that most elderly people at the end of their life have no access to the GP. We reach out to our elderly patients and we try to deliver the best possible care we can to them, especially when they are approaching the end of their life.

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Lord Deben Portrait Lord Deben (Con)
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I agree with that, but the point of the amendment from the noble Lord, Lord Rook, is to tie together a period of someone being in the National Health Service. I agreed with the comments made by the lawyers about “normally resident”, rather than other words. The noble and learned Lord who introduced the Bill might consider that this amendment will give some confidence to those who had a concern because it means that “normally resident” has been underlined by the fact that someone has in fact been in a general practice of the National Health Service. I cannot see that it does any harm, given that there is a year in any case. It underlines what the noble Lord reminded us of: the idea that this should be a part of the normal way in which people are dealt with.

I do not like the Bill very much, but it is our job to make it work. To do that, it is more valuable to fix it within the National Health Service as we have it, rather than trying to invent a service that we might well like to have—and I am old enough to remember when we did have it. Let us not pretend, when things are not as they ought to be.

Baroness Gerada Portrait Baroness Gerada (CB)
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My Lords, if a patient is at the end of their life in any practice in the NHS, that patient will be discussed at a multidisciplinary team meeting. The patient will be put on an end-of-life pathway and will have a named clinician within the practice to do their care. This would include assisted dying. There is absolutely no way that a patient, unless in an extraordinary situation—and I take the point about Wales, which has a desperate problem with GPs—would not be cared for in that way. That is how our contract is; that is how we want to care for our patients. We would code it on the notes so that every single person consulting with that patient would know that this patient was an assisted dying choice, and they would get the care that I have just described.

With respect to the arbitrary 12 months or 24 months, many patients choose to move at the end of their life. They choose to move to the place where their loved ones are. Many choose to do something such as go abroad to the countries that they may have come from and come back right towards the end of their life. To put in an arbitrary barrier of 12 or 24 months is not putting the patient first; it is putting an arbitrary time limit first.

Baroness Falkner of Margravine Portrait Baroness Falkner of Margravine (CB)
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My Lords, I wonder whether the Minister in winding up could advise us what the Companion says about Peers making speeches on the same amendment over several points of the passage of that amendment.

It is a pleasure to follow the noble Lord, Lord Deben, speaking to the amendment from the noble Lord, Lord Rook. There is a lacuna in Clause 1(1)(d), which, by requiring registration with a GP, does not cover the practical point of what happens to people who have lost contact with their GP. They may have lost contact for no other reason than being so ill, perhaps with cancer as that is the main illness that people who might be seeking assisted dying have, that they have been taken into private care—those who are lucky enough.

An increasing proportion of the population of the United Kingdom now uses private care, not least because employers provide it as part of a package. So, coming to continuity of care, if we must have the light-touch amendment of the noble Lord, Lord Rook, in the Bill, to clarify and strengthen Clause 1(1)(d), I will share with the Committee very briefly a practical experience of what it means to have advanced cancer and the interaction with the GP. My GP practice, having failed to diagnose me over six months, as I mentioned in my Second Reading speech, slipped away the moment I engaged with private care, although every single consultation with a private practitioner is sent to the GP. Nevertheless, between 30 August 2024, when I was first diagnosed, and late this September, I had no contact whatever with my GP practice. I was finally invited to come in and was told I had fallen between the cracks—it must have been a pretty large crack to have lasted 14 months.

I noticed in the equality impact assessment that 66% of the people who sought assisted dying in the two jurisdictions quoted were people who had cancer. My question to the noble and learned Lord when he winds up on this debate is therefore, what consideration has been given, in having Clause 1(1)(d) in the Bill, as to the relationship of the private oncologist who is treating that patient with the local GP, given that terminally ill people in significant enough numbers that we need to be conscious about them in the Bill may well have been—shall I say—passed on from the GP?

As a final point, once I had the diagnosis, I had the experience of requesting treatment at my local—within a walkable distance—leading cancer teaching hospital in the United Kingdom. When I rang about that after the diagnosis, I was told by my GP, “They won’t take you, because now you’ve gone private”. I leave that for noble Lords to reflect on.

Terminally Ill Adults (End of Life) Bill Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill

Baroness Gerada Excerpts
Baroness Gerada Portrait Baroness Gerada (CB)
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My Lords, I assure the noble Baroness, Lady Coffey, that this issue will never be a routine tick-box exercise. Being in Tenerife rather than Torbay is the choice of the patient. If they want to spend that time there before they return to the UK and die, it is not our choice. Videos allow patients and their families to be together for those assessments. There is no ethical or clinical reason why an assisted dying request, or aspects of care included in the clauses laid out, must be face to face. What matters is capacity, choice and informed consent, not physical proximity.

During Covid, I assessed thousands of patients’ capacity, consent and safeguarding issues remotely, with no evidence of increased coercion or harm. Patients can already refuse life-sustaining treatments such as renal dialysis, have feeding withdrawn or make advanced decisions to remove treatment without face-to-face legal requirements. Face-to-face assessment requirements, as laid out in these amendments, are a policy choice, not a clinical or ethical necessity. What protects patients is careful assessment, independence, documentation and review, not the distance between two chairs.

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Lord Markham Portrait Lord Markham (Con)
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To follow on from that, as my noble friend said right at the beginning, the amendment was put down in such a blunt fashion absolutely to stimulate this sort of debate. What has been really useful in this debate is finding that there is a broad degree of consensus that AI can be valuable as an input to decision-making, but it should not be used as the output: as the final decision-maker. As mentioned, AI can detect the progression of cancers and can probably do better prognosis or improve, especially over the time that we are looking at here, so that you can get better assessments of how long someone is likely to live.

On the AI in the chat box, there are very many instances where it could be very useful in terms of detecting coercion if it is talking to someone over quite a long period of time. Therefore, in all of this we see that, with inputs to the decision-making process, AI has a valuable part to play, but I think we would also absolutely agree that the final decision-maker in terms of an output clearly has to be a human; obviously they will be armed with the inputs from AI, but the human will make the final decision. I think that is what the Bill does, if I am correct, in that it is very clear that the decision-makers, the panels, the doctors and everything are those people, but at the same time—although I guess the Bill is silent on this—obviously it enables AI as an input.

I hope this debate is useful in that it shows a degree of consensus and that in this instance we probably have the right balance, but, again, I would be interested to hear from the Bill sponsor in his response whether that is the case.

Baroness Gerada Portrait Baroness Gerada (CB)
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My Lords, under this amendment as it stands, we would have patients who could not have computerised records, because we have AI sitting behind every computer. The AI starts at the beginning. It starts with our telephone system, so, in fact, the patient would not even be able to use the telephone to access us; they or a relative would have to come in. They certainly would not be allowed to have computerised records, because of the digital and AI systems that we have in order to pick out diseases and to make sure that we are safely practising.

They also would not be able to have electronic prescribing, in many ways, because the pharmacy end too uses AI to make sure that patients are not being overmedicated and for drug interactions, et cetera, and, if they are using a computer system, AI is also used to digitally scribe consultations. So I understand the essence of this amendment, which I think, as many have said, is to not allow AI to decision-make somebody at the end of their life, but, as it stands, I have to warn noble Lords that it is unworkable in clinical practice.

Baroness Berridge Portrait Baroness Berridge (Con)
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My Lords, I am grateful to my noble friend for laying such a broad amendment, and obviously I agree with much of what the right reverend Prelate said. It is interesting that this is coming straight after the debate on face-to-face conversations. We are all used to ticking the “I am not a robot” box, but AI now has the ability to create persons, and it is often very difficult if you are not face to face to judge whether the person on screen is actually a person. I cannot believe we have got there quite so quickly.

However, it is also important to consider about public confidence and understanding at the moment. This is, as we keep saying, such an important life-or-death decision. There is a lack of understanding and people are potentially worried about these implications, often with regard to employment but also other purposes. For instance, as I was preparing this, it made me reflect, as the noble Baroness, Lady Gerada, said, on how your GP uses AI. When Patchs told me recently that the NHS guidance was that I should not take an over-the-counter drug for more than two weeks, I queried it.

However, only yesterday, I thought: was that answer actually from my GP or was it from an AI tool sitting behind the system? We really need to be careful with the level of public understanding and awareness of its use. This use of AI is also one step on and connected to Clause 42, which relates to advertising. I am grateful that the noble and learned Lord is going to bring forward some amendments on that clause. I hope that the connection with AI, as well as the Online Safety Act 2023, have been considered. If I have understood the noble and learned Lord correctly, I am disappointed that we have had no assurance that those amendments will be with us by the end of Committee, when the noble and learned Lord gave evidence on 22 October last year and accepted that there was additional work to be done on Clause 42.

I said at Second Reading that the Bill is currently drafted for an analogue age. I am not wanting to take us back to some kind of quill and no-use-of-AI situation. Obviously, as other noble Lords have said, the Bill do not deal with the pressure or coercion not being from a human being. It also does not consider that coercion can now be more hidden with the use of AI. The Bill does not deal with people being able to learn to answer certain tools by watching YouTube. Therefore, we could be in a situation where someone who would not qualify if there was a face-to-face non-AI system could learn those answers and qualify.

There are also good studies to say that its use in GP practices has had some inaccuracies. In many circumstances, there is a lack of transparency and accountability in tracing where the decision has come from. We do not even understand the algorithms that are sending us advertisements for different shops, let alone how they could be connected to a decision such as this.

Finally, my biggest concern is that there will be a limited number of practitioners who will want to participate in this process. That has been accepted on numerous occasions in your Lordships House. I will quote from a public letter written on 12 June last year. All of Plymouth’s senior palliative medicine doctors were signatories to a letter warning us of the risks of the Bill and saying that the

“changes would significantly worsen the delivery of our current health services in Plymouth through the complexity of the conversations required when patients ask us about the option of assistance to die”.

That is relevant for two reasons. First, if we have a shortage of practitioners in parts of the country, such as the south-west if those doctors’ opposition to the Bill translates into not being involved, there may therefore be an increased temptation to resort to more use of AI. I hope that the noble and learned Lord or the Minister can help on this point.

Many of these systems—I am speaking as a layperson here—rely on data groups and information within the system: the learning is created from that. If you have a very small pool of practitioners and some form of AI being used, does that not affect the creation of the AI tool itself? I hope that I have explained that correctly. With such a small group doing it, will that not affect the technology itself?

Terminally Ill Adults (End of Life) Bill Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill

Baroness Gerada Excerpts
Experts and charities say that the Bill does not contain any provision to prevent individuals with eating disorders being classified as terminally ill. They support the amendments to make the Bill safer, all of which were rejected in Committee in the other place. I ask that noble Lords think carefully about the amendments before the House and support Amendments 89, 91, 92, 101 and 103.
Baroness Gerada Portrait Baroness Gerada (CB)
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My Lords, I am completely in favour of Amendment 87. I have permission to use the name of my patient, Melanie Spooner, who died from anorexia nervosa—she died from taking her own life. The end point of anorexia nervosa is often that the patient wants to die. As such, it is a terrible mental illness, and I think that not conflating and excluding this group is absolutely the right way forward.

One other issue has been bothering me ever since I have been coming to these Fridays: it is the conflation of the words assisted suicide with assisted death. For a decade now, I have been looking after those bereaved following the death by suicide of their loved ones, and I have about 100 people whom I care for. Suicide is often a violent act; it is often an act done alone and it is often done to punish people—I am terribly sorry if anyone here knows people who have killed themselves. It is a very prolonged bereavement, and a very complicated grief that affects up to 60 to 70 people in its wake.

Assisted death, as we have heard from the group that came from Australia, can sometimes be filled with hope and sometimes with joy, with family around for those last moments. It affects both groups: those whom I look after, who have been bereaved following suicide, and the relatives of those who have taken voluntary assisted death. It is such a small thing, but it really grates, and it is one of the most inappropriate and irresponsible ways of conflating the language.

Baroness O'Loan Portrait Baroness O'Loan (CB)
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Before the noble Baroness sits down, can I ask her whether she is aware that recent research has shown that 42% of people think that assisted death is actually the provision of palliative care, and that it is actually quite important to distinguish between the two?

Baroness Gerada Portrait Baroness Gerada (CB)
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I was not aware of that research. The evidence shows, and we heard it from the Australian group, that where voluntary assisted death is in place, the provision of palliative care is improved. In Australia, a great deal more resource was put in to providing palliative care. My point, however, is: please can we no longer conflate the language of assisted suicide with that of voluntary assisted death.

Lord Moore of Etchingham Portrait Lord Moore of Etchingham (Non-Afl)
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My Lords, I of course agree with the noble Baroness, Lady Gerada, that there are many different motives for killing yourself, but we are talking about making a law here. It is very important that the natural and ordinary meaning of words is established and preserved. Suicide means killing yourself, and what is proposed in the Bill is killing yourself with assistance. It is very important to keep explaining that to people, because otherwise they will be permanently misled about what is actually happening.

Terminally Ill Adults (End of Life) Bill Debate

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Baroness Gerada

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Terminally Ill Adults (End of Life) Bill

Baroness Gerada Excerpts
Lord Carlile of Berriew Portrait Lord Carlile of Berriew (CB)
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My answer to that is that they jolly well should be. I do not see at all that that is a point against the argument I am making. I would say exactly what I am saying in relation to any specialism. It is a very simple point: do I want someone knowledgeable to explain what palliative care is, or is not, available to me, or do I want it explained by a generalist, who may be extremely good, such as the noble Baroness, Lady Gerada, or rather less good? I used to be a lay member of the General Medical Council, and I have disciplined very large numbers of doctors as a result of that experience. Having this specialist care is an absolutely essential requirement of what we are discussing.

Baroness Gerada Portrait Baroness Gerada (CB)
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My Lords, I thank the noble Lord for his “any old” comment; I am “any old” general practitioner. I will pick up a few issues. One is around the register being made publicly available. I absolutely would not want my name on a publicly available register as somebody providing the services of assisted dying—not because I would be ashamed but because of the hate mail that I would get and the distress that I would already have. That does not mean that I am against some form of register. Of course there can be a register, just as there is for doctors who do Section 12 approvals under the Mental Health Act, and for doctors who do all sorts of things, but to have a publicly available register goes one step too far.

The second issue is that we are—I am—already getting confused about the opt-in/opt-out; we saw that earlier. If this becomes law, all doctors must be trained in assisted dying, whatever that training involves; the royal colleges will determine that. Just as all doctors are trained in the termination of pregnancy, even though they may not deliver a termination of pregnancy—whether they opt out of delivering any services is up to them—all doctors must be competent in this area. I have been a GP for nearly 40 years and have worked with doctors who do not want to get engaged at all in the delivery or any aspect of the termination of pregnancy. Nevertheless, they are there to counsel their patients and direct them to a doctor who is available and willing.

Lord Harper Portrait Lord Harper (Con)
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The noble Baroness said that she does not want a publicly available register. Does she think that the patients of a general practitioner have the right to know whether that general practitioner is willing to provide assisted suicide services?

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Baroness Gerada Portrait Baroness Gerada (CB)
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I have talked before about using the term “assisted suicide”. If this becomes available, it will be an unusual event: we are not talking about hundreds of patients wanting an assisted death. I suspect that, within each local area, a list will be available, held at the local health authority or wherever, of those doctors who are willing to participate. Noble Lords may have gone to the event at which the Australians said how it is done in their country: it is done by doctors of all professional groups. It is about the competence and capabilities, not the specialties, of those doctors who wish to pursue the training in order to become competent and capable of doing this. This is all feasible. We are not talking about me in my consulting room nipping off at lunchtime and administering assisted death. We are talking about a regulated system that will be properly managed with small numbers. I hope that is an answer.

My final point is about the use of drugs that are there to treat disease. I am sure that, with her expertise in palliative care, the noble Baroness, Lady Finlay, will know that, at the end of life we use drugs, sometimes at extraordinarily high doses, that we know will accelerate death.

Baroness Finlay of Llandaff Portrait Baroness Finlay of Llandaff (CB)
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I intervene on the noble Baroness’s comment about training. Everybody is, indeed, trained in abortion, for example, as they go through medical school, but by the time you are practising clinically and you are on a specialist register, you are no longer keeping up to date with those skills at all, and your revalidation depends on your keeping up to date with those skills, which is the benefit of having a specialist register.

If I might comment on the noble Baroness’s opening remarks about being worried about receiving hate mail, perhaps she might have some sympathy for those of us in palliative medicine who have been receiving a great deal of hate mail because we are known to be specialists in palliative medicine and because we have been flagging up concerns over the Bill. As for the numbers—

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Baroness Fox of Buckley Portrait Baroness Fox of Buckley (Non-Afl)
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My Lords, I thank the noble Baroness, Lady Cass—that was totally compelling. We will all have to read it and reread it, but it gave us a real sense of what it would be like. Sometimes, we are talking in the abstract.

In a more concrete sense, I think of this group of amendments as the workers’ rights group. We must take seriously what is being asked of all the workers involved. If a Bill of this kind were to be passed, all sorts of workers associated with health and social care would be expected to deliver it. What happens if that goes against their conscience? This is why I have added my name to Amendments 268 and 617 in the name of the noble Baroness, Lady Finlay of Llandaff, which seek to make opt-in for doctors explicit in the Bill. It is important to extend any conscience protections to a wider range of workers who might not want to be involved in assisting in the death of others.

I wished to add my name, but there was not room for me, to Amendment 673 in the name of the noble Baroness, Lady Fraser of Craigmaddie. It is very important that all workers be free to refuse to participate without penalty. I have also tabled my own Amendment 657 and thank the noble Baronesses, Lady Smith of Newnham and Lady Eaton, for supporting it. It concerns proposing that the provision of assisting in someone’s death is not regarded as a medical treatment. We have heard excellent explanations of why, existentially, it should not be a medical treatment, and there are a range of ethical reasons for that. However, for the purposes of this group, the amendment is relevant because, if assisted dying is a medical treatment, this could put practical and regulatory pressure on doctors in particular in terms of their duties.

The aim of this group is quite straightforward, particularly in relation to opt-in: to ensure that no medical professional or related staff are forced to participate in assisted dying or undergo training in assisted dying against their will. I know that supporters of the Bill are keen fans of autonomy, so this group of amendments is indispensable. Let us make this an autonomous, positive choice for those workers who are happy to take part in the process. The noble Baroness, Lady Andrews, has reassured us that, under the Bill, there will be no pressure to participate. However, she will know that in many workplaces, unless opt-in is made explicit, workers’ rights are not always given full satisfaction.

However, as it happens, the noble and learned Lord, Lord Falconer, thinks that this opt-in should be in the Bill. He emailed us in January to tell us that, following extensive conversations with the BMA, “I believe that explicitly including the words ‘opt-in’ on the face of the Bill would provide greater reassurance to medical practitioners”. I agree. I was a bit disappointed that those amendments were not tabled more quickly, but they have now emerged. I am glad to see that there is an explicit opt-in provision, but it is too narrow and too exclusive, being confined to a co-ordinating doctor, an independent doctor and so on, as explained so well by the noble Baroness, Lady Finlay. This leaves out significant parts of the wider medical workforce. I am worried that GPs, nurses and other front-line staff could still be mandated to participate in either assistance or training regardless of their conscientious objection.

These concerns are not only about narrowly focusing on opting only for the co-ordinating or independent doctor. We must recognise the dangers of considering opt-in only in relation to medical professionals. Amendment 673, tabled by the noble Baroness, Lady Fraser, is a reminder not to leave out the plethora of staff who might well be asked to play a secondary role in assisted dying, such as those who work in care homes or prisons. What about the member of staff, perhaps a porter, who is asked to escort a patient to a room where an assisted death will take place?

Baroness Gerada Portrait Baroness Gerada (CB)
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For goodness’ sake.

Baroness Fox of Buckley Portrait Baroness Fox of Buckley (Non-Afl)
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“For goodness’ sake”—well, a bit of empathy might be helpful.

Our main focus is understandably on doctors, even nurses, but we must be careful not to assume that those with medical degrees—the professionals—are entitled to a greater respect for their consciences than other relevant workers: like porters.

I have previously spoken about my qualms regarding the care sector being sidelined in discussions about the Bill. Care England has complained that it has been under-consulted, not least on “opt-out, opt-in”. This matters in terms of the unintended consequences of the Bill. In Care England’s survey of its members, 24% of providers said that staffing would be very difficult because of the likelihood of conscientious objection, speculating that if forced to comply, care staff will walk out. Imagine what a tragic unintended consequence that would be. Only 14% reported that staff would willingly participate in the procedure; 34% reported that their staff would not be willing to participate at all. On what constitutes participation, the Royal College of Nursing has reminded us in written evidence to the other place of the need to consider administrative work:

“protection should also extend to indirect involvement, such as administrative tasks or referrals, to ensure all”

professionals

“are supported in line with their personal and professional values”.

I now want to reflect briefly on the issue of training, which is so important in relation to these amendments. Practically everyone involved in providing medical or care services, particularly medical services, has to do mandatory training units. Obviously, they are studying at university, but there is, as we have heard, revalidation, CPD and so on. If a robust opt-in conscience clause does not cover all such training, might those who try to opt out get a career-limiting black mark against their name? Might those forced to do such training fail if they do not endorse assisted dying as a medical treatment of merit or receive professional sanctions if they give the wrong answers? I am looking for a guarantee from the noble and learned Lord that no workers will face legal or professional repercussions, including indirect penalties of discrimination, for declining to participate in either training or the procedure.

On my Amendment 657, despite the insistence when we discussed Wales last week that this is a change in criminal law, not a health Bill, the necessity to amend the constitution of the NHS and the huge changing expectation of medical ethics—

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If this amendment is accepted, doctors will at least be sure that they will not be failing to comply with their duty to raise treatments in discussion with patients and that no liability could arise from their not doing so. I commend these provisions to the House.
Baroness Gerada Portrait Baroness Gerada (CB)
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On a point of clarification, we have heard it said several times that the Royal College of GPs is in favour of a publicly available register. To the best of my knowledge, and having just checked, the Royal College of GPs is not in favour of a publicly available register. It is in favour of opt-in, but not of a publicly available register.

Baroness O'Loan Portrait Baroness O'Loan (CB)
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I said that there should be a publicly available register and that the Royal College of GPs is in favour of an opt-in.

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My final point is about extending this to everyone in the process. There is a lack of clarity about what “provision of assistance” means: whether it is simply the provision of the poisons that are to end life, or every aspect of the process. I do not know who said it, but I was very disappointed when the noble Baroness, Lady Fox, referred to a porter being very uncomfortable and not wanting to participate in the process, and somebody shouted out, “For goodness’ sake!” I thought that was appalling. A porter in the health service has exactly the same right as a doctor to not participate in this process. They should have the same right to object to this as anybody else and to have to opt in to it. Expecting in particular junior members of staff to have to use the employment tribunal system, and to defend themselves if they are put under pressure to participate, is not the right way to deal with it. An explicit opt-in system for every single person in the system is the right way to go. I strongly support the amendment, which makes it clear and puts beyond doubt that this is not a medical treatment, because that then deals with the other duties that may fall on medical professionals in the National Health Service.
Baroness Gerada Portrait Baroness Gerada (CB)
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Can I give a clarification? I have just been in contact with most of the senior officers at the Royal College of General Practitioners. To put it on the record, to the best of my and their knowledge, the RCGP has not called for a register, a public one or otherwise.

Lord Harper Portrait Lord Harper (Con)
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I am grateful to the noble Baroness. I said they were in favour of an opt-in system; I did not say they had called for a register. I want a register and I support the amendments that say we should have one. As the noble Lord, Lord Moore, said, it should be a public register. In essence, if you did not have a public register, as soon as people asked their GPs and other medical professionals for their view, in the modern world that information would become public. It would be much better to have a proper, well-managed system that was published, and then everyone would be clear about where people were on this and could access the relevant medical professionals if they wished to use them.

Terminally Ill Adults (End of Life) Bill Debate

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Terminally Ill Adults (End of Life) Bill

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Baroness Mattinson Portrait Baroness Mattinson (Lab)
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I am speaking very briefly so, if the noble Baroness does not mind, I will continue. Many of those stories have been told very movingly here today.

The point is that 52% of us have cared for or witnessed a family member who was terminally ill and suffering at the end of their life. Unsurprisingly, experience of this rises with age, up to 66% in the 50 to 64 year-old age group, and higher as you get beyond that. Research—for example, England’s first ever citizens’ jury, so more qualitative and deliberative research—tells us that support for law change grows the more that people understand the issue and hear about it.

Meanwhile, the backdrop to this debate is that trust in our democracy has never been lower. Too often, the public do not feel listened to. Confidence in this unelected Chamber is at its lowest ever: a desultory one in five has confidence in the House of Lords to do its job. At the end of last year, YouGov found that just 2% had a lot of confidence in the House of Lords and only 17% had some confidence. Some noble Lords have quoted a poll that suggests that the public would like to see us doing better scrutiny. Yes, in abstract, they absolutely would, but, with reference to this particular Bill, a YouGov poll recently found that 58% disagreed with the way the Lords has dismissed the Bill while only 17% found it acceptable. Again, public opposition rises, as you would expect, with greater experience by age, consistent with the lived experience of the impact and pain of the alternative.

As this debate draws to its close, we should all be aware that the way the Bill has been treated by this Chamber risks having profound implications for the Chamber itself and its reputation, as well as the absolute tragedy of ignoring the passionately held public view for assisted dying.

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Baroness Gerada Portrait Baroness Gerada (CB)
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My Lords, I remind the House that Harold Shipman was a murderer convicted of 15 life sentences plus four years. He did not provide an assisted death. I would like that to be on the record.

I stand here as a general practitioner with over 40 years’ experience and, as I have said many times, as president and chair of the Royal College of GPs. Over the decades, I have had the privilege, though not always an easy one, to care for patients at the end of their lives. For some, I have been present at the moment when life passes to death. It is an extraordinary moment—not, as it is often portrayed, bleak or clinical or purely tragic, but something far different. When death is well supported, when it is anticipated and when it is held by family and those who care, it can be a moment of stillness, connection and a sense of peace that feels unexpectedly profound. It is one of the most powerful experiences I have ever had as a doctor. In those moments, one thing is always clear: the patient is at the centre. Their wishes, relationships and dignity all shape how that final phase of care unfolds when it goes well.

However, that is not the whole truth. I have also cared for many patients whose deaths have not gone well: patients who have refused treatments or have starved themselves rather than endure what lies ahead; patients who, sadly, have ended their own lives, unable to bear the weight of their diagnosis; and patients whose illnesses have taken away from them the ability to make their own decisions, and whose deaths have been placed into the hands of others—families, clinicians and the systems acting in their place.

That brings me to the heart of this debate. The question is simply, though uncomfortably: whose death is it? For decades, medicine has placed patient autonomy at the centre, bounded by capacity, consent, clinical judgment and protection from coercion. We speak of choice, dignity and the individual’s right to determine what happens to their own bodies; we have built systems, laws, safeguards and languages all around that. Yet, at the moment when autonomy might matter most—the manner and timing of one’s own death— it is withdrawn. At that point where a patient is dying, we say, “Not here. Not you”. To my mind, that is not just a tension but an inconsistency that demands reflection, which is what I have been doing over the last few months.

I say with respect that much of what I have heard in this House has strongly focused on risk, even today, but risk is not unfamiliar territory in medicine. It is our daily working environment. We do not eliminate uncertainty; we manage it. We make complex decisions every day about treatment, capacity and withdrawal of care under conditions of imperfect knowledge, guided by safeguards, judgment and professional accountability.

Alongside this focus on risk, there has been a tendency, again as I have heard today, to imagine worst-case scenarios and to construct arguments at their point of failure rather than their point of function— the “what if?”—and to build in increasing complexity to cover every possible scenario that might come up to manage these hypothetical fears. We have even heard today about the 100 languages that are spoken. How do we manage learning disability? How do we manage people who are disabled? We do this every single day, a million times per day.

Even the Chief Medical Officer, Sir Chris Whitty, warned in his oral evidence that we are

“layering layer upon layer of complex bureaucracy on top of one another”,

and, in my mind, expecting the dying patient to jump through endless hoops, be that having to see their GP six times in six months, living at the same address for 12 months or having repeated assessments. We have heard powerful testimonies about relatives who have died. Can you imagine, at the moment of their death, asking them to do repeated serial sevens—that is, counting backwards from 100 in sevens—or to draw a clock face to assess capacity?

Let me take my own profession: general practice. Listening to some of the debates here, one might think that when a patient receives a terminal diagnosis general practice fades away—that we retreat or that care fragments. This is not my experience, nor that of many of my colleagues. When a patient enters their final phase of life, general practice leans in. We intensify care; we place patients on dedicated pathways; we ensure rapid access to benefits; and we maintain continuity with a named clinician, who is more likely than not a GP. We co-ordinate care with community teams, palliative care specialists and families and we ensure that we do our best to provide continuity in and out of hours. We organise ourselves around the patient. We do not move away. Instead, we gather more closely. Are there failures? Yes, of course—no system is without them—but end-of-life clinicians across disciplines try, often beyond expectation, as I have, to keep the patient at the centre and to get it right.