Terminally Ill Adults (End of Life) Bill (Fifth sitting)

Kim Leadbeater Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Lewis Atkinson]

Yes, I am asking whether that is the case.

Professor House: I think the problem with this Bill is what assessment it expects to be made that does not cover the ground that I have been talking about. It just asks, “Is this person able to make decisions?” Essentially, that is what the assessment boils down to, and it does not cover the psychological and social assessment. What I am suggesting is not a terribly radical thing—it is in the guidelines from the National Institute for Health and Care Excellence, in other clinical circumstances where we come across people who say they want to end their life. NICE guidelines say that we should undertake a psychological social assessment.

Richard Robinson: We as an organisation are calling for the need, in a safer ageing society, to foster an environment where the safety and dignity of ageing individuals is guaranteed. We have seen some horrific examples, such as in covid with DNRs, and I think there are some parallels to be drawn there. We want to see as much robust safeguarding and checking in place as possible to ensure that that kind of issue does not come to the fore.

[Kim Leadbeater (Spen Valley) (Lab)]

Q If I may, I have a question for Professor Esmail, but I will make an observation—I think I have a duty to do this, and to be the voice of some of the people we are talking about this afternoon: the terminally ill people who are dying. We talked a little bit about suicide earlier, but it is clear to me that the terminally ill people I have met would not describe themselves as suicidal at all. They want to live, but the fact is, they are dying—that is a very important distinction to make.

Also, Richard, I would love to know your thoughts. I hear what you are saying about protections for older people, but as you rightly said, it is fair to say that not all older people are vulnerable, and that a lot of older people support a change in the law. Also, not all older people are terminally ill—I think about my grandad, who asked me to take him to Switzerland. I have thought about him a lot in recent months, but he would not have been covered by the Bill because he was not terminally ill; he was just old. Those are just a couple of observations, which you can come back on if you wish.

Professor Esmail, you acknowledged that during your time as a GP, you went on your own journey on assisted dying. I think you described yourself as being implacably opposed, but you also stated that the law at the moment is a mess and does not protect anyone. Can you tell us a little about that journey and how you came to that conclusion?

Professor Esmail: With the Shipman inquiry, I realised that there were real gaps in the process. Dame Janet Smith put in many safeguards about end-of-life care. But it became apparent to me that in terms of choice, we did not have any safeguards.

My own experience was of looking after someone who had a terrible cancer of the mouth and had pleaded with me before. He declined surgery; he said that he knew what he was going to do, that he would say his goodbyes and everything else, and that at some point he wanted to end his own life. He asked if I could help him to do that. Of course I could not, and explained why. I promised him that I would do as much as I could to alleviate his suffering. It is very graphic—it is awful. You basically choke; you cannot swallow; this thing just grows into your mouth and so on. I asked myself, “What am I achieving?” He was going to die—he knew that he was going to die. I asked myself, “Am I achieving anything by just saying, ‘No, you’ve just got to go through this process, because there is something about suffering that everyone has to go through, and it is part of life’?” I just said to myself, “This is wrong.”

When I investigated it more, I realised that you see this: people make the choice about going to Dignitas. As a doctor, they would come to me sometimes and say, “Can you fill in my medical form?” That put me in a very difficult position. Actually, it is against the law to do that because I am assisting someone. The Director of Public Prosecutions has said that they will not always prosecute people, but nothing is clear about this. We know from surveys that Dignity in Dying has done that something like 600 people take their own lives because they don’t want to go through the suffering. But it is all behind closed doors, in sometimes very violent ways. When you look at things like that, you say, “How is the law protecting anyone at the moment?” I have come to the conclusion that we don’t have a legal framework, and because of my research on patients I would say that it is actually very unsafe. So, paradoxically, a law that talks about these things, which produces safeguards, is a huge improvement on where we are at the moment. That is the first point.

The second point I would make is that, as the Committee has talked about, there are already complex decisions. We make them all the time. We assess capacity. If someone comes to us and says, “I want to do a lasting power of attorney,” you need to assess capacity. When a relative says to you, “I have lasting power of attorney; I can speak on behalf of my mother”—or whatever else—you say, “No—I still want to speak to your mother.” There are many areas where the law is quite well defined in that respect. So, we are already doing that.

There are very grey areas where people take the decision to refuse treatment. I think it is very difficult. We seem to be happy to be saying, “All right, we will support you, but you agree not to take any food and water and you will dehydrate to death,” or if someone has end-stage motor neurone disease and says, “I want you to pull my tube out,” to say, “We will sedate you while we do that.” So, these things happen already. And from my understanding, the law will bring a clear legal framework for doing that. And actually, I think it will protect doctors and patients in the decisions they make. That is why I think we have to move now.

We have put in some safeguards. Many doctors are very good at assessing this—in terms of mental capacity, for example. We are doing it all the time. It is an integral part of our training. I am not saying it is perfect. I take the points about coercion, and it is difficult. But again, we are becoming more aware of this as a society. Typically, as GPs, we are given training about trying to identify domestic abuse, how to deal with that and so on. I think things are improving. I am not saying that there is no coercion; we don’t know. The point is that at the moment, we have no monitoring. If we have a legal framework, we will know how many people have chosen assisted death; we will know that they have gone through a process—we will know all these things. It just makes it much more clear and open for everyone. I think it will make the quality of the conversations we have with dying people even better as well. There are many, many reasons why I came to that conclusion when I thought about it.

[Kim Leadbeater]

That is really helpful. Dr Mullock, do you want to add anything?

Dr Mullock: I agree with most of the things that I am aware of that Professor Esmail just talked about. I would add that at the moment, people go sooner than they would wish to die because they have to go to Switzerland while they are still well enough to travel. They also have this terrible fear that their loved ones will be prosecuted by the police, which creates huge amounts of stress and is really unpleasant. I agree that having a system of prospective assessment of the person, rather than retrospective—when it is too late after they have died—will absolutely be a better and more compassionate approach, and provide better safeguards than we have at the moment.

[Jake Richards (Rother Valley) (Lab)]

Q If I may, I will push Professor House on the evidence he was giving to Mr Atkinson’s questions, so that I understand the necessity for psychiatric assessment under the current legal framework. Clearly there are degrees here. If a patient who has diabetes refuses to take insulin but would otherwise be able to manage their disease, then they would be referred to you, but is it your experience that if a patient rejected a round of chemotherapy, they would usually be subject to a psychiatric assessment?

Professor House: No, these things depend on the circumstances. If somebody says, “I’ve had enough of this. I’ve had chemotherapy and I don’t want any more,” they would not be subject to that, unless it was such a sudden change in the context of other changes in the person that the oncologist treating them thought something needed further explanation; it would not be terribly common, no.

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[Lewis Atkinson]

Q I have a question for Baroness Falkner. I want particularly to probe the socioeconomic duty. What is your assessment of that as it relates to agency and control at the end of life? My constituents in Sunderland, unfortunately, are on average notably less well off than the rest of the UK. Is it not the case that at the moment there is choice at the end of life for people who are well off and able to travel to Switzerland, but poorer people do not have that choice? What is the EHRC’s view from a socioeconomic point of view?

Baroness Falkner: For clarity, a socioeconomic duty has not been incorporated. It is the current Government’s intention to incorporate that part of the Equality Act, but it has not been incorporated so we are not looking at it through that specific prism. But you make a very valid point because inequalities in healthcare, housing and all the associated factors that play into good health and wellbeing are there, and they exist palpably—even across geographical parts, from one bit of an area to another. They play actively into it.

Ms Hadi will be able to give better testimony than I could on this but, from what one understands, GP provision and general access to healthcare are poorer where demographics are poorer than it is in the better performing parts of the country. One other factor to consider in terms of a postcode lottery is that people in wealthier parts of the country tend to be more highly represented in private healthcare than in public healthcare and use of the NHS. That also impacts their choices and the care they get.

Fazilet Hadi: On health inequality, I take your point about how some of us can afford to fly off to Switzerland and some cannot, but some of us live in boroughs where we will die 10 years earlier and some of us have learning disabilities and might die 27 years earlier. I know you are looking at clauses, but this Bill will go into the real world, and that is what is happening in the real world—people are not getting social care and not getting palliative care. They are dying earlier. More poor people will die earlier and more poor people will have fewer options, fewer choices, less nice homes and fewer facilities to support them. As Baroness Falkner said earlier, they will unfortunately have insufficient social care and palliative care. When we are looking at inequalities, we need to note that this Bill is going to be plunged into a society that has deep, entrenched health inequalities that do not play out well for people who are poorer.

[Kim Leadbeater]

Q Thank you so much for giving evidence this afternoon. Perhaps I can provide a bit of reassurance, Baroness Falkner, on a couple of issues. The first thing I would say in terms of the Bill—

[The Chair]

Order. I think it is best if we ask questions of the witnesses. As I said, the Committee—you, not me—has allocated an hour to this, and I want to make sure every Member gets an opportunity to speak. We only have 20 minutes left, with five or six people to go.

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[Kim Leadbeater]

It will be a question. The Bill is very clear, in clause 2(3), that disabled people are not within its scope, but I would be really interested to know if there is anything you think we could add to make that clearer—I put that to Fazilet, too—because I want to be really clear about that, and I want to provide any reassurance that I can.

My main question is to Lord Sumption. You acknowledge the importance of autonomy and dignity at the end of life, and indeed article 8 of the European convention on human rights talks about bodily autonomy and self-determination. I would be interested to know how you came to that conclusion on the issue of assisted dying. You also described the Bill as over-engineered, bureaucratic and impersonal—thank you for that. Would you agree with the chief medical officer, then, that we should avoid making the choice of assisted dying a “bureaucratic thicket” and keep the safeguards robust but simple? If so, what do you think that could look like?

Lord Sumption: I do agree with that. The chief medical officer, at least in the extract from his evidence that I saw, was not very specific about how the thicket could be loosened a bit. I have made one suggestion that I think would make a significant difference, which is the removal of the clause 12 stage. That is the principal point. The medical input from the two referee doctors is an important but private and informal process, whereas the proceedings of a court are extremely public and formal, and also productive of a very considerable delay. That would make a considerable difference in the direction that you have been talking about.

[Kim Leadbeater]

Q Baroness Falkner, do you want to come in on the point about how we could make the Bill more robust in terms of those protections?

Baroness Falkner: Can I just pick up the point about section 6 of the Equality Act 2010? That is clear, but it was not written with the intention of applying in these circumstances; it is a very narrow definition of disability. Excluding disabled people in that sense is a good thing and we support that, but it does not go far enough in our view.

Fazilet Hadi: I do not know how you can exclude disabled people, because there is a huge overlap between disabled people and people who will at some point become terminally ill. I find that challenging. I do not think that separation can happen in the letter of the Bill. There will be disabled people who are also terminally ill people.

On the wider point about what that will mean for other disabled people, who this Bill does not cover at all, I agree that the Bill is trying to circumscribe what it covers, but in the real world is it very likely that it will not have implications for the way people, doctors and health authorities think about disabled lives? I understand that the Bill’s drafters do not have that intention, but again, in the real world, where disabled people already face challenges in their lives being valued, we will come across that shift in culture more widely than this Bill wants to happen.

[Kim Leadbeater]

Q You raise a really important point. There is a range of different views within the disabled community, and we heard some of them this morning. A professor of disability rights made the point that disabled people also do not want to be excluded from the Bill, because if you have a terminal illness and you are disabled, you should have the same rights as everyone else. I do not know what your thoughts are on that.

Fazilet Hadi: I think when it comes down to individuals, as I say, you are not going to be able to work out whether someone is disabled, terminally ill, black—people have so many identities. The issue for us, and the reason we are opposed to it, is not that we do not think that what is happening to people at the end of their lives is difficult—of course it is. But we took the view that we are trying to create a society where disabled people are equal and valued, and in that sense the Bill actually makes it harder for us to reach a disability-inclusive society. We come at it from that view. As parliamentarians, I know you want to look at the problems of individuals, but you also have a responsibility to think about the society we want to create. I and other disabled people feel that we already have an uphill struggle convincing people that our lives are of equal value, and this Bill hinders us in that aspiration and ambition, rather than helping us.

[Kim Leadbeater]

Thank you.

[Jake Richards]

Q Dr Graham, in paragraph 21 of your very helpful written evidence, you say that the judicial involvement in the process strengthens the Bill, in terms of convention compatibility. Do you agree with Lord Sumption about the effect on convention compatibility if that stage were not present, and do you have any comments on the suitability of a judicial function, and whether there is any alternative?

Dr Graham: I am afraid my answer will be quite short.

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[Kim Leadbeater]

On a point of order, Mr Dowd. I am slightly concerned that we are having a conversation about the process, rather than about the actual Bill. I am not sure whether that is in scope of the work of the Committee.

[The Chair]

I am allowing latitude to tease the matters out, but I am sure that the witnesses have heard what you have to say.

Baroness Falkner: I will briefly conclude. Any bit of additional analysis is welcome, but quite a lot of additional analysis needs to be done, and we would welcome that.

Fazilet Hadi: Disabled people are not a homogenous group. Just like the general population, disabled people will have all sorts of views. Probably some will be very informed about this debate, and others will not be. Our position as Disability Rights UK and the disabled people’s movement is not about counting how many people are supportive or not supportive; it is much more about the knowledge and evidence that we have about how society works, how discrimination works, how equality works, and the barriers that we face.

I take the point that you are looking at the clauses of the Bill, but you were testing the real-world implementation and implications of the Bill when I was listening to the earlier session. I will just say some of the things that are in the real world at the moment, and these have been mentioned: insufficient social care and healthcare; insufficient palliative care; rampant and worsening health inequalities; disability discrimination, and the devaluing of disabled lives. We only have to go back five years, to the covid pandemic, to see how disabled lives were devalued. We all know about the “Do not attempt resuscitation” notices. We all know that disabled people sometimes did not receive access to critical care. We all know that young people with learning disabilities were disproportionately dying. I really think the real-world implications always have to be tested. This Bill is not an abstract exercise; it will land in a society that is rife with inequality.

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[Jack Abbott]

Q I have a short final question. Is Marie Curie’s position basically that if palliative care does not improve, assisted dying should not be introduced in this country?

Sam Royston: We are neutral on the question of whether assisted dying should be introduced. We are not neutral on the question of whether palliative care should be improved.

[Kim Leadbeater]

Q Thank you, witnesses, for joining us this afternoon. The good news for us all, on the palliative care conversation, is that we have in the room the Minister responsible for palliative care, who has heard those arguments loud and clear. Indeed, Second Reading showed that there is a huge amount of good will in the House for improvements in palliative care. I agree with you, Mr Royston, that it is not an either/or. We have to do both, and I think this House is very keen and prepared to do both. Hopefully, the implementation period will provide some reassurance, because this will not happen for a number of years. We have got time to make those improvements alongside each other while still giving terminally ill people the choice that I firmly believe they deserve.

Dr Neerkin, on that point, yesterday we heard a range of views from palliative care professionals, and there are a range of views within the sector around assisted dying. Could you tell us a bit about your views as a result of your more than 25 years of experience as a consultant physician in palliative medicine?

Dr Neerkin: First of all, death and dying is not owned by palliative care. We are hearing a lot about palliative care, but we have also heard from GPs that they deal with a lot of death and dying, as does every other speciality. So first of all, we do not own death and dying. I think a lot is being put on palliative care, and palliative care is not a panacea for everything at the end of life. This is multifactorial; it is about good medical care, good social care, good care in the community and everything that can be provided for people of all backgrounds and all abilities and disabilities. I think that is really important to begin with.

I am very lucky to work in a trust that has a huge amount of backup for palliative care, interventional pain control and psychology. We have great backup to provide great end of life care, which is not available all across the country. Despite that, there is still a need for assisted dying, because that does not answer every single question. What I have seen over the years is that people want some control when they lose all other control and they do not feel dignified. It is not just about being a burden; they do not want their loved ones to see them suffering and to lose all dignity in front of their loved ones, as they are doing. As we see in other countries, people want to have that choice. It does not necessarily mean they will take it up in the end, but to know that they can choose assisted dying is incredibly important to them, and it gives them advocacy and a bit of autonomy and control where they lose control.

Those are the questions that are brought to me when people say, “Can you not just hasten this death?” People just want to have the conversation around it. Even if I were to say to them, “If I had a tablet here and now that I could give you, would you take it?” probably eight out of 10 times people would say no, because inherently people have a will to live. We are talking very much about dying and people wanting to die, but most people I treat and most families really want their loved one to live. It is just about being able to have the choice and feeling that, if things become unbearable for them, or they feel they have lost all dignity and all control in a situation, they have got a bit of control left.

[Kim Leadbeater]

Q Dr Hussain, I hear your concerns about the broader impact on society, and certainly in terms of ethnic minorities. Have you seen any evidence that that is an issue in other jurisdictions? The evidence we have heard is that people from ethnic minorities are underrepresented in assisted dying statistics, meaning that potentially there is discrimination the other way, in that they are not accessing it in the way that perhaps people from better-off backgrounds are.

Dr Hussain: That is a really important point. Over-whelmingly, going into the communities I have worked with for a long time in Bradford, I have found that the big impact post covid is this big fear—fear that this will impact them, and fear that it will result in them not only not accessing our services and therefore having poorer deaths, but also not accessing other healthcare intervention. As I said, the people I spoke to identified a small number of people who would want it, but they were structurally disadvantaged. Again, we need that clarity. If people are structurally disadvantaged, and they are doing this because they cannot get culturally competent and trauma-informed mental health support and social support, do I offer them assisted dying or not? That is a really important issue. In terms of them having inequitable access, I am not actually against it, but the biggest impact I see in a UK context post covid is this massive fear that they have, and I am really worried about that. I want to offer better support to structurally disadvantaged people who want this.

Issues were also identified about the prognosis of people who want to go down this route. They are more likely to die of conditions that are harder to prognosticate, such as cardiac disease, which has a fluctuating trajectory. There were concerns about how families will be involved. Families are really important for decision making, and our research shows that they are the safeguard against discrimination, so we need to find a way for them to be involved. There were also worries about coercion and mental health. People brought that up to me spontaneously, saying that it was often missed in their communities or misunderstood by health and social care services.

[Kim Leadbeater]

Q On that point, do you think there could be better training around coercion?

[The Chair]

Order. If people want to intervene, can they please do so through the Chair? Otherwise, we will get into chaos. Could you please finish answering the question?

[Kim Leadbeater]

Sorry.

Dr Hussain: I really liked what you said yesterday; we need gold standard training. The thought yesterday about what happens with capacity made me think straight away about cases in the last few months where we, as a palliative care team, thought that someone had capacity, and the other team did not. That happens all the time in palliative care; it is a really frail population, and it is really complex. The safeguards for assisted dying must be higher, so I like the idea of gold standard training and, crucially, gold standard implementation and evaluation.

I looked yesterday to see what the evidence is that capacity assessments are great and fine, and there was none. I tried to look at whether there are differences for different communities, but we have not even looked at that. However, we do know that people who are racialised as black are 3.5 times more likely to be detained under the Mental Health Act 1983, so the chances are that there are discrepancies there.

Similarly, with coercion, do we know if safeguarding training is absolutely fit for purpose? We all see stories in the newspapers every year in which people who have come in contact with healthcare professionals who have had this safeguarding training end up dying. It is not fit for purpose, and we need to have a gold standard.

Perhaps that will filter out and bring everyone else up, but, with my academic hat on, I would say that the implementation gap is the biggest thing. In palliative care, we have been trying for a long time to train up people who are not palliative care specialists. We need to be thinking about the implementation of that in a system under pressure. We also need to think not only about what the training is, but about how we implement it and, crucially, evaluate it, so that we can be confident that it is safe.

[The Chair]

I remind Members that we are now halfway through and we have seven Members to go. We have already had six questions, and we have seven to go in the next half hour. I repeat that I do not want to interrupt our witnesses at the very end to stop the panel.

Terminally Ill Adults (End of Life) Bill (Third sitting)

Kim Leadbeater Excerpts

Tuesday 28th January 2025 Public Bill Committees

[Tom Gordon]

Q Since the assisted dying Bill had its Second Reading, we have seen announcements from the Government about investment into palliative care. Obviously that is mostly capital and we need to see more long-term funding. Do you feel we are already seeing increases as a result of this conversation? Is there any reason why that should not continue?

Dr Cox: I would love to see it continue. I am part of the commission on palliative and end of life care. There is no guarantee that the recommendations of that commission will be funded, and that is what concerns me. I would love to see that happen. Would it not be great if the two could happen simultaneously? But there is no guarantee that that will happen.

James Sanderson: I want to come in on your point and agree with Sarah’s points. Obviously, we welcomed the Government’s announcement of the additional funding for the hospice sector, but the Committee will be aware that the hospice sector currently receives only about 30% of its funding from statutory sources. We are therefore reliant on the good will of the population to raise money and support us in various ways, and through retail and other ventures that we have.

On the point about universality of service, we have in the Health and Care Act 2022 a requirement for integrated care boards to commission palliative care services that meet the needs of their population, but although there is guidance as to what that should look like, there is not universal take-up of that guidance and delivery of all of the stated services. Although that is outside the scope of this Bill, it comes back to the context of how much the overall position can be strengthened across the country. The context for anybody looking to make a decision is within the same space. As Dr Clarke said in respect of informed choice, if the context is the same for everybody, we can have more confidence that that informed choice is made at the right level.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Goodness me, there is a lot to cover.

To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses.

Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions.

I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that.

Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that.

Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level.

The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way.

What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that.

The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity.

Dr Clarke: Regarding training and how much it is required, I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.

What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not.

The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it.

This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.

[Kim Leadbeater]

Can I ask a quick follow-up, Chair?

[The Chair]

We will come back to that once I get other Members in.

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[The Chair]

One last question, very quickly.

[Kim Leadbeater]

Q I have a very quick one. You talked about inequality in healthcare and in systems. What I would like to come back to is the status quo. What are your comments on the inequality that exists currently, where assisted dying is available to people who have got the money to go to Switzerland, or another jurisdiction, and have an assisted death? I ask Dr Ahmedzai, first of all.

Dr Ahmedzai: Clearly, British people have had that option for many years, since Switzerland first offered that. It is clear that two things happen. One is that it selects people who are better off and more functionally capable—they can do it—so it discriminates against disabled people. Also, people tend to do it long before they need to, when they are still fit. That is because mostly, they want to go on their own, without dragging relatives along. It is doubly damaging to families who are going through an illness with somebody who is dying. They have to say goodbye to them long before they need to. However, that is because we do not offer that option here.

[Kim Leadbeater]

Does anybody else want to comment? Dr Cox?

Dr Cox: I am happy to. Of course we do not want people to have to make that choice. I will refer to everything I have said before: are they are making a real choice, and have they had access to really excellent palliative care?

I also make a brief point about the impact of the discussion around what dying looks like that the Bill has raised, and the fact that the stories that have been told have suggested to many members of the public that death is inevitably ugly, horrific and dramatic. Actually, that has made many people fearful, and they have been emailing me and saying, “I am now afraid of dying, and I wasn’t before.” They may then choose assisted dying before they need to because they have had a fear instilled in them that death is inevitably horrible and dramatic.

[Kim Leadbeater]

But those deaths do exist.

[The Chair]

Order. That brings us to the end of the time allotted to the Committee to ask questions. I thank our witnesses on behalf of the Committee for their evidence.

Examination of Witnesses

Sir Max Hill KC, Alex Ruck Keene KC and Sir Nicholas Mostyn gave evidence.

--- Later in debate ---

[The Chair]

We will now hear oral evidence from Dr Ryan Spielvogel, who is senior medical director for aid in dying services at Sutter Health, California, and Dr Jessica Kaan, who is medical director for End of Life Washington. Both witnesses will appear via Zoom. I call on Members to ask questions, but in view of the last point of order, I must be absolutely clear that I will interrupt if questions to the witnesses are too long. We do not have much time and people want to get their questions in—there has to be an element of self-discipline in that regard.

[Kim Leadbeater]

Q I will try to be brief. I thank the witnesses for joining us from wherever they are in the world—it is great to have you with us today. I will get straight to the point. There is understandably a significant amount of nervousness about the potential change that the Bill would create within England and Wales. Could you talk to us a little bit about what the process has been like in your jurisdictions and what it looks like now? What are your experiences, particularly focusing on questions around mental capacity and coercion? Dr Spielvogel can go first.

Dr Spielvogel: Thank you all for having me today. I am Ryan Spielvogel and I am senior medical director for assisted dying services for Sutter Health in California. I have been an assisted dying physician for the past eight and a half years, since the law went into effect here, so I have seen many terminally ill people going through the process.

You asked specifically about coercion and capacity. Determining mental capacity is something that we use physicians to do every day. There are codified steps and processes for us to be able to assess a person’s capacity. Capacity for anything, for any procedure or medical intervention, is presumed—that the patient has capacity—until they are deemed to not have capacity. We do that through asking questions, determining their understanding of their disease process, asking them to repeat what their understanding of their options is, and making a decision and then telling us their judgment as to why they came to that decision.

That is something that we do every day. It is oftentimes informal. For instance, if I am prescribing someone blood pressure medication, I might not go through the entire process of assessing capacity, but in longer or higher-stakes conversations like end-of-life discussions, I usually do ask somebody to repeat back to me what they understand of their disease process, their options, what their decisions are and why they are making those decisions. That is basically exactly what I do in these conversations.

In terms of coercion, I understand the concern. It is a very valid concern that people have. I have seen this in many jurisdictions in the US, where different states are considering legalising assisted dying, but I will tell you that in practice it just does not happen. I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion. People are just not that good as actors.

So we get the family out of the room. We dig deep into their concerns, their justifications and the reasoning behind their choices. It is often crystal clear, when you are speaking to someone who is suffering from a terminal illness. They are very focused on their symptoms, very focused on their quality of life, very focused on their suffering. I do not ever get the sense from them that their family, their doctors or anybody is coercing them into the decision. In fact, if anything, I have seen it many times the other way around. I tend to see it where the patient is really ready to let go, but the family is really not ready to let go, and the family puts up varying degrees of roadblock to the patient accessing assisted dying. I have seen many cases of people being coerced out of it; I have never seen someone being coerced into it.

[Kim Leadbeater]

Q That is incredibly helpful—thank you. Dr Kaan, do you want to add anything to that, and maybe touch on the training that takes place around identifying these things and the conversations that take place?

Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion.

We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones.

In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q My question is about how the legislation is going and how you have implemented it. What changes have you made since it began? What teething problems did you find as you were going along? What adjustments have you made to your process?

Dr Spielvogel: The original version was called the End of Life Option Act. It legalised assisted dying in California when it went into effect in 2016. It was then amended in 2021, I believe; the effect of the main amendment was to shorten the waiting period. There was a 14-day mandatory waiting period between two verbal requests that a patient would give directly to their physician. What we found when we were studying it was that approximately 30% of people died during the waiting period.

There were many conversations with patients. The thought process behind the waiting period is that somebody is making a persistent, well-thought-out and non-capricious decision when they are asking for this, but there is a false premise there—[Interruption.]

--- Later in debate ---

[The Chair]

Let us be clear. Witnesses can submit written evidence until the Committee reports to the House. It is open to Members to individually write to witnesses and invite them to give written evidence, if they so wish. My advice to the hon. Member is that if he wishes to look at this in a more formal way or through a more formal mechanism, he is to speak to the Committee Clerks, because it is beyond my remit.

We now come to motions (a) to (d) amending the sittings motion tabled by the Member in charge. I have selected the amendment tabled to motion (a) and will group all four motions and the amendment for debate. I will first call Kim Leadbeater to move motion (a), then Naz Shah to move the amendment. The scope of the debate is all four motions and the amendment.

[Kim Leadbeater]

I beg to move amendment (a), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after Mencap (Thursday 30 January, until no later than 5.00 pm), leave out “Representative of Senedd Cymru” and insert—

“Professor Emyr Lewis (Emeritus Professor, Department of Law and Criminology, University of Aberystwyth), Royal College of General Practitioners, Royal College of Psychiatrists.”

These amendments allow additional witnesses to be called to give oral evidence, including representatives from Disability Rights UK, the Royal College of General Practitioners, the Royal College of Psychiatrists, and an expert in Welsh devolution and constitutional matters.

As the sessions today have shown, hearing from expert witnesses is an extremely important part of this process, so I hope I have the support of the Committee in making these additions. On the motion to call additional witnesses tabled by my hon. Friend the Member for Bradford West, I respect the suggestion but I am confident that we have an eminently qualified witness to cover issues of coercion and domestic abuse in Professor Jane Monckton-Smith, who was suggested by my hon. Friend.

We have also heard today—and will hear from many witnesses over the next few days—from medical doctors, social workers, nurses, palliative care experts and geriatricians. That is around 50 witnesses in total. While I fully appreciate that a wide range of additional charities and organisations has valuable contributions to make, I would encourage them to submit written evidence so that the Committee has the benefit of their thoughts.

Regarding the start of the line-by-line scrutiny of the Bill, given the huge volume of evidence—both oral and written—that we have received and are still receiving, I have consulted with colleagues across the Committee and there is a consensus that having next week to absorb and evaluate the evidence, and to prepare any amendments in light of it, is extremely important. Consequently, we would begin line-by-line scrutiny on Tuesday 11 February, as per the amendment.

I hope that these amendments demonstrate the robust approach that the Committee and I are taking to our work, and I encourage colleagues to support them.

[Naz Shah]

I beg to move an amendment to amendment (a), at end insert—

“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.

I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.

This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.

The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.

Standing Together Against Domestic Abuse has said that

“We must echo concerns raised by the VAWG sector”—

the violence against women and girls sector—

“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.

Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.

We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.

We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”

All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.

In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.

Terminally Ill Adults (End of Life) Bill (Third sitting)

Kim Leadbeater Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Tom Gordon]

Q Since the assisted dying Bill had its Second Reading, we have seen announcements from the Government about investment into palliative care. Obviously that is mostly capital and we need to see more long-term funding. Do you feel we are already seeing increases as a result of this conversation? Is there any reason why that should not continue?

Dr Cox: I would love to see it continue. I am part of the commission on palliative and end of life care. There is no guarantee that the recommendations of that commission will be funded, and that is what concerns me. I would love to see that happen. Would it not be great if the two could happen simultaneously? But there is no guarantee that that will happen.

James Sanderson: I want to come in on your point and agree with Sarah’s points. Obviously, we welcomed the Government’s announcement of the additional funding for the hospice sector, but the Committee will be aware that the hospice sector currently receives only about 30% of its funding from statutory sources. We are therefore reliant on the good will of the population to raise money and support us in various ways, and through retail and other ventures that we have.

On the point about universality of service, we have in the Health and Care Act 2022 a requirement for integrated care boards to commission palliative care services that meet the needs of their population, but although there is guidance as to what that should look like, there is not universal take-up of that guidance and delivery of all of the stated services. Although that is outside the scope of this Bill, it comes back to the context of how much the overall position can be strengthened across the country. The context for anybody looking to make a decision is within the same space. As Dr Clarke said in respect of informed choice, if the context is the same for everybody, we can have more confidence that that informed choice is made at the right level.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Goodness me, there is a lot to cover.

To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses.

Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions.

I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that.

Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that.

Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level.

The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way.

What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that.

The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity.

Dr Clarke: Regarding training and how much it is required, I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.

What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not.

The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it.

This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.

[Kim Leadbeater]

Can I ask a quick follow-up, Chair?

[The Chair]

We will come back to that once I get other Members in.

--- Later in debate ---

[The Chair]

One last question, very quickly.

[Kim Leadbeater]

Q I have a very quick one. You talked about inequality in healthcare and in systems. What I would like to come back to is the status quo. What are your comments on the inequality that exists currently, where assisted dying is available to people who have got the money to go to Switzerland, or another jurisdiction, and have an assisted death? I ask Dr Ahmedzai, first of all.

Dr Ahmedzai: Clearly, British people have had that option for many years, since Switzerland first offered that. It is clear that two things happen. One is that it selects people who are better off and more functionally capable—they can do it—so it discriminates against disabled people. Also, people tend to do it long before they need to, when they are still fit. That is because mostly, they want to go on their own, without dragging relatives along. It is doubly damaging to families who are going through an illness with somebody who is dying. They have to say goodbye to them long before they need to. However, that is because we do not offer that option here.

[Kim Leadbeater]

Does anybody else want to comment? Dr Cox?

Dr Cox: I am happy to. Of course we do not want people to have to make that choice. I will refer to everything I have said before: are they are making a real choice, and have they had access to really excellent palliative care?

I also make a brief point about the impact of the discussion around what dying looks like that the Bill has raised, and the fact that the stories that have been told have suggested to many members of the public that death is inevitably ugly, horrific and dramatic. Actually, that has made many people fearful, and they have been emailing me and saying, “I am now afraid of dying, and I wasn’t before.” They may then choose assisted dying before they need to because they have had a fear instilled in them that death is inevitably horrible and dramatic.

[Kim Leadbeater]

But those deaths do exist.

[The Chair]

Order. That brings us to the end of the time allotted to the Committee to ask questions. I thank our witnesses on behalf of the Committee for their evidence.

Examination of Witnesses

Sir Max Hill KC, Alex Ruck Keene KC and Sir Nicholas Mostyn gave evidence.

--- Later in debate ---

[The Chair]

We will now hear oral evidence from Dr Ryan Spielvogel, who is senior medical director for aid in dying services at Sutter Health, California, and Dr Jessica Kaan, who is medical director for End of Life Washington. Both witnesses will appear via Zoom. I call on Members to ask questions, but in view of the last point of order, I must be absolutely clear that I will interrupt if questions to the witnesses are too long. We do not have much time and people want to get their questions in—there has to be an element of self-discipline in that regard.

[Kim Leadbeater]

Q I will try to be brief. I thank the witnesses for joining us from wherever they are in the world—it is great to have you with us today. I will get straight to the point. There is understandably a significant amount of nervousness about the potential change that the Bill would create within England and Wales. Could you talk to us a little bit about what the process has been like in your jurisdictions and what it looks like now? What are your experiences, particularly focusing on questions around mental capacity and coercion? Dr Spielvogel can go first.

Dr Spielvogel: Thank you all for having me today. I am Ryan Spielvogel and I am senior medical director for assisted dying services for Sutter Health in California. I have been an assisted dying physician for the past eight and a half years, since the law went into effect here, so I have seen many terminally ill people going through the process.

You asked specifically about coercion and capacity. Determining mental capacity is something that we use physicians to do every day. There are codified steps and processes for us to be able to assess a person’s capacity. Capacity for anything, for any procedure or medical intervention, is presumed—that the patient has capacity—until they are deemed to not have capacity. We do that through asking questions, determining their understanding of their disease process, asking them to repeat what their understanding of their options is, and making a decision and then telling us their judgment as to why they came to that decision.

That is something that we do every day. It is oftentimes informal. For instance, if I am prescribing someone blood pressure medication, I might not go through the entire process of assessing capacity, but in longer or higher-stakes conversations like end-of-life discussions, I usually do ask somebody to repeat back to me what they understand of their disease process, their options, what their decisions are and why they are making those decisions. That is basically exactly what I do in these conversations.

In terms of coercion, I understand the concern. It is a very valid concern that people have. I have seen this in many jurisdictions in the US, where different states are considering legalising assisted dying, but I will tell you that in practice it just does not happen. I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion. People are just not that good as actors.

So we get the family out of the room. We dig deep into their concerns, their justifications and the reasoning behind their choices. It is often crystal clear, when you are speaking to someone who is suffering from a terminal illness. They are very focused on their symptoms, very focused on their quality of life, very focused on their suffering. I do not ever get the sense from them that their family, their doctors or anybody is coercing them into the decision. In fact, if anything, I have seen it many times the other way around. I tend to see it where the patient is really ready to let go, but the family is really not ready to let go, and the family puts up varying degrees of roadblock to the patient accessing assisted dying. I have seen many cases of people being coerced out of it; I have never seen someone being coerced into it.

[Kim Leadbeater]

Q That is incredibly helpful—thank you. Dr Kaan, do you want to add anything to that, and maybe touch on the training that takes place around identifying these things and the conversations that take place?

Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion.

We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones.

In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q My question is about how the legislation is going and how you have implemented it. What changes have you made since it began? What teething problems did you find as you were going along? What adjustments have you made to your process?

Dr Spielvogel: The original version was called the End of Life Option Act. It legalised assisted dying in California when it went into effect in 2016. It was then amended in 2021, I believe; the effect of the main amendment was to shorten the waiting period. There was a 14-day mandatory waiting period between two verbal requests that a patient would give directly to their physician. What we found when we were studying it was that approximately 30% of people died during the waiting period.

There were many conversations with patients. The thought process behind the waiting period is that somebody is making a persistent, well-thought-out and non-capricious decision when they are asking for this, but there is a false premise there—[Interruption.]

--- Later in debate ---

[The Chair]

Let us be clear. Witnesses can submit written evidence until the Committee reports to the House. It is open to Members to individually write to witnesses and invite them to give written evidence, if they so wish. My advice to the hon. Member is that if he wishes to look at this in a more formal way or through a more formal mechanism, he is to speak to the Committee Clerks, because it is beyond my remit.

We now come to motions (a) to (d) amending the sittings resolution tabled by the Member in charge. I have selected the amendment tabled to motion (a) and will group all four motions and the amendment for debate. I will first call Kim Leadbeater to move motion (a), then Naz Shah to move the amendment. The scope of the debate is all four motions and the amendment.

[Kim Leadbeater]

I beg to move amendment (a), in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025, after Mencap (Thursday 30 January, until no later than 5.00 pm), leave out “Representative of Senedd Cymru” and insert—

“Professor Emyr Lewis (Emeritus Professor, Department of Law and Criminology, University of Aberystwyth), Royal College of General Practitioners, Royal College of Psychiatrists.”

[The Chair]

With this it will be convenient to discuss motions (b) to (d).

[Kim Leadbeater]

These amendments allow additional witnesses to be called to give oral evidence, including representatives from Disability Rights UK, the Royal College of General Practitioners, the Royal College of Psychiatrists, and an expert in Welsh devolution and constitutional matters.

As the sessions today have shown, hearing from expert witnesses is an extremely important part of this process, so I hope I have the support of the Committee in making these additions. On the motion to call additional witnesses tabled by my hon. Friend the Member for Bradford West, I respect the suggestion but I am confident that we have an eminently qualified witness to cover issues of coercion and domestic abuse in Professor Jane Monckton-Smith, who was suggested by my hon. Friend.

We have also heard today—and will hear from many witnesses over the next few days—from medical doctors, social workers, nurses, palliative care experts and geriatricians. That is around 50 witnesses in total. While I fully appreciate that a wide range of additional charities and organisations has valuable contributions to make, I would encourage them to submit written evidence so that the Committee has the benefit of their thoughts.

Regarding the start of the line-by-line scrutiny of the Bill, given the huge volume of evidence—both oral and written—that we have received and are still receiving, I have consulted with colleagues across the Committee and there is a consensus that having next week to absorb and evaluate the evidence, and to prepare any amendments in light of it, is extremely important. Consequently, we would begin line-by-line scrutiny on Tuesday 11 February, as per the amendment.

I hope that these amendments demonstrate the robust approach that the Committee and I are taking to our work, and I encourage colleagues to support them.

[Naz Shah]

I beg to move an amendment to motion (a), at end insert—

“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.

I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.

This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.

The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.

Standing Together Against Domestic Abuse has said that

“We must echo concerns raised by the VAWG sector”—

the violence against women and girls sector—

“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.

Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.

We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.

We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”

All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.

In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.

Terminally Ill Adults (End of Life) Bill (Second sitting)

Kim Leadbeater Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sarah Olney]

Q Can you talk a little bit more about whether you perceive any difficulties in having a definition of terminal illness in the Act? How do you think the medical profession will interpret that?

Professor Whitty: At the extremes —most people are at the extremes—it is very clear what is going to happen. For most people, you can say with confidence, barring some extraordinary accident like being hit by a car on the way out, “You’ll be fine in a year, even though you have heart disease, cancer or whatever.” At the other extreme, there are people who are clearly dying and will die in the next two or three days, and virtually nothing will change that reality.

What we are talking about in the Bill, of course, is a point between those stages, but people will definitely reach a point where there will be an inexorable and, importantly for the Bill, unreversible slide towards a point of death. People can make a reasonable central view, if they are experienced in a particular disease, about when the death is likely to happen, accepting that there is a spread around that. I am sure that the general public and Members of Parliament fully accept that this is not a precise science. This is a central view, and there is a big academic literature around this. Some people will die significantly earlier than they are predicted to; a small number will die very significantly later; and some people will certainly die a bit later or to some degree later. The central view is usually reasonably accurate—that someone is now on a pathway from which there is not going to be a return.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for coming to give evidence this morning, gentlemen. I would like to pick up on coercion and capacity, because they are two really important points in the Bill. I would like to know a little more about the work that doctors and nurses do to check for coercion and assess capacity when patients are making really important decisions and choices at the end of life, but maybe in other contexts as well. The Bill refers to the Mental Capacity Act. That Act is a big piece of legislation, but I am conscious that there is only a short reference to it in the Bill. Is there anything we could add to the Bill that would improve the robustness of the reference to mental capacity? What does it look like now, and is there anything we could add?

Professor Whitty: Duncan, why don’t you take the first bit and I will take the second?

Duncan Burton: In terms of looking for signs of coercion, all of our nursing and clinical staff have safeguarding training, which already looks at things like whether people are under financial coercion or other forms of abuse. That training is already in place and it is extensive across the NHS and social care. If the Bill is passed, we will need to look at how we strengthen that training in relation to spotting the potential signs of coercion in this space as well. Given that that mechanism is already in place, I think that would be an extension, so it is important that we factor that in. I am also mindful, given the scale of colleagues we have working across health and care, that the time between the Bill being passed and its implementation is sufficient that we enable everybody to receive that additional training, if it is required.

Professor Whitty: In terms of strengthening the Bill, as a practitioner, I was relieved that the decision was for the Bill—if it stays this way—to stick with the Mental Capacity Act, and that was for two reasons. First, that Act is used up and down the country by doctors and nurses every day; they know it and they understand it. Although, as you say, it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, “Does this person have capacity?”, in almost all cases you will get six or seven identical answers, because people are used to using it.

It additionally has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation. Within the legislation, it is very important that there are some situations where you will need to call for additional assistance. For example, if someone has a co-existing mental health condition, you will probably want to ask a psychiatrist additionally whether that condition is interfering with the decision taken to the point that someone loses capacity for this very important decision. The level of capacity has to be reasonably high.

My own view is that starting this way is the sensible thing to do. That does not mean there could not be arguments for some additional points, but I cannot immediately—again, as a jobbing doctor—see ones where I think, “This is going to make a big difference.” The fact is that this is founded on a very established bit of well-used and well-recognised legislation.

[Kim Leadbeater]

Q To that point, in those conversations where patients are making very serious decisions, it is not uncommon that you would seek additional advice from other professions, such as a psychiatrist or possibly a social worker and other professionals, if you felt there was a need to do so.

Professor Whitty: The further you go up in the seriousness of the decision, the more you would do that. For example, if you were setting a finger that had been broken, you are not going to wait until a psychiatrist has said that you can do that. Within reason, provided that someone gives consent, you will do that. You will be much more cautious about moving forward with things like open heart surgery or deprivation of liberty if you think there is uncertainty. It should be clear. For the majority of people, it is very clear they have capacity or very clear they do not. There is a relatively small—but important—number in the middle where that is less clear and where additional views are relevant, particularly where there is a question of co-existing mental health issues. The fact of the mental health condition does not in itself mean that someone does not have capacity, but what has to be taken into account is, “Do they have the capacity for this decision at this point in time?” That is how the Mental Capacity Act works.

[Rebecca Paul (Reigate) (Con)]

Q The Bill sets out that it should be brought into force within two years. If the intention is to provide assisted dying through the NHS, can the NHS be ready in time to deliver the service equitably and safely? What needs to be deprioritised in order for it do to so?

Professor Whitty: As we have seen in covid, the NHS, like any service, can swing very fast if there is a need for speed. In this case, I think most people in society would say that the key thing is to get this right. Personally, I would rather it was not running against a timeline. You would not want it to drag on forever, because then you have uncertainty for everybody, but I think Duncan and I would both say that two years seems a reasonable starting point. With some things, it might take longer than that to work out how we are going to provide this in the most safe and equitable way—for example, in dealing with minority and other groups. We need to get all that right and, at least at first pass, get it as close to good as we possibly can.

Equally, we may find when we first start using the legislation that there are some things that we had not considered at the beginning, and therefore we need to go back and improve on them because we just had not thought about them in the first way through the gates; that is why I hope that some of the more operational issues are done through secondary legislation and regulation. Inevitably, that is true for many bits of legislation, but it is particularly important here.

I go back to my very first comment: the central person here is an average citizen in their last six months of life. What we do not want is a system very difficult for them to navigate so that they spend their entire last six months of life—if the Bill is passed and they choose to take account of it; they are going to be a minority—stuck in a bureaucratic thicket. We need to keep this simple. My view is that the best safeguards are simple safeguards. Overcomplicating usually makes the safeguard less certain.

--- Later in debate ---

[Sarah Olney]

Q Leading on from Dr Opher’s question about the “must refer” clause, you and Professor Whitty both stress the importance of the relationship between the doctor and the patient, yet there may be doctors who feel very strongly against mentioning assisted dying. Given the existence of clause 4(5) and the “must refer”, do you think there is a danger that there might be doctors who would be reluctant to provide a prognosis of six months or less if they thought that that would make the patient eligible for assisted dying, and that simply was not something they could support?

Dr Green: That is why it is important that doctors should be able to opt out at any stage of this. There are doctors who would find it difficult to do that, and it is important that their position is respected.

[Kim Leadbeater]

Q On the point about referral, what happens in the case of abortion? That is one of the closest parallels we can get. If we have a doctor who is not comfortable having that conversation, presumably they cannot just leave that person with nowhere to go.

Dr Green: What would happen is that the doctor would provide the patient—through their receptionist, through leaflets or through a telephone number—with somewhere they could get the information. You cannot just abandon a patient. They have to be sure that the patient has the ability to do what the patient wants to do.

[Kim Leadbeater]

Q Exactly, so although the terminology of “refer” might not be quite right, are we saying that we have got to provide that patient with a course of action?

Dr Green: Yes. It is the “referral” word that is problematic for us.

[Kim Leadbeater]

Q That is very helpful. Let me turn to when the GMC guidance on arrangements about assistance to die is raised with practitioners. Part of the guidance is that practitioners have to

“respect competent patients’ right to make decisions about their care, including their right to refuse treatment, even if this will lead to their death”.

I am interested in how that fits in with those very difficult conversations. When a patient executes that right to refuse treatment, are those cases logged? Are they monitored or reported on?

Mark Swindells: There was an important piece of case law—I think in the 1990s—that clarified that a patient refusing treatment and subsequently dying is not an act of suicide. You are right that our guidance talks about the importance of a doctor explaining to the patient about the likely course of action in terms of the option for no treatment. Again, that is intertwined with the Mental Capacity Act 2005, and puts a lot of autonomy in the space of the patient, along with the consent case law that we covered before.

On the previous point about referrals, our guidance is similar to what Dr Green was saying: in the case of conscientious objection—for example, on abortion—the important point is that, from the patient perspective, they are not left with nowhere to go. If that assists, that may be a principle that helps and reads across.

[Kim Leadbeater]

Q On the point about reporting, where patients take that right to refuse treatment, capacity must be assessed at that point if a patient has said, “Look, I don’t want any more treatment.” That is quite an important point to assess capacity. Are those cases logged and recorded?

Mark Swindells: Yes. It would be important for the patient’s records to cover the points of consent and that the doctor has recorded that they have interacted with the patient that way. I do not believe it is centrally held or collated in any sense like that, but I may be wrong.

[Jake Richards]

Q Dr Green, on subsections (4) and (5) of clause 4 and the information services, as opposed to the referral to a practitioner, I think your point has some weight. In terms of the rest of clause 4 as drafted, it has an opt-in, it gives wide discretion to practitioners and there is no obligation to raise it, so from my understanding of your written evidence, it ticks all the boxes. Is that fair?

Dr Green: Yes, with the exception of the referral.

--- Later in debate ---

[Jack Abbott]

Q My question, which relates to some of the points made earlier, is for Glyn Berry. Your organisation has recommended a new role: the approved palliative care professional. To go into the detail a bit more, you make a number of recommendations on what that role would include, such as ensuring that the person has the mental capacity to make the decision. First, are you therefore saying that this new role should sit alongside the two-doctor process, which has already been outlined in terms of final decision making? If the approved palliative care professional felt, for example, that this person did not have mental capacity, should they be able to, as it were, stop the process?

Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.

Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.

In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.

Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.

It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.

One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.

[Kim Leadbeater]

Q Thank you for coming and giving evidence today, and for meeting with me recently. You both represent organisations that have neutral positions on assisted dying. I am really interested in this multidisciplinary approach that you are talking about, and I think it is a really valuable conversation, so thank you for raising those points.

I want to ask a bit more about what this end-of-life conversation looks like in your experience, because you are absolutely right; of all the people who are spending time with patients in their last few months of life, it is often nurses and palliative care social workers. You have a really important role to play.

I am also interested in what this would look like in reality. There has been talk of a kind of separation of palliative care and assisted dying, but, actually, I think we should be looking to embrace a holistic approach to end-of-life conversations and end-of-life care, which is what has happened in other jurisdictions. You might have a patient who has signed up for assisted dying but never does it because they have good palliative care and they work with their palliative care experts and specialists. Therefore, I think it is important that we do not try to separate these things.

I would like your views on that, but I think that one of the strengths is that having these conversations about death, about dying and about end of life is a really positive thing. Your members have an important role to play in that, so could you talk a little bit about the holistic approach that your members take?

Professor Ranger: You are right regarding the conversations and the care around dying. Having those conversations with people around pain management and symptom management is particularly the role of palliative care nurses. With assisted dying, I think the conversation is sometimes slightly different. It is talking more as a nurse in some ways, because the primary reason that assisted dying is often a discussion is a lack of autonomy, not pain. Therefore, the conversation generally tends to go in a slightly different way.

Symptom control, and being scared of pain, is understandable, and we absolutely have the ability to get that right for people, but when it comes to seeking assisted dying, the primary reason is usually autonomy, rather than pain and fear of dying. Therefore, in a practical way, I think an experienced nurse or doctor will start to gauge the difference in those conversations, because they are different. I think it is about being really clear around those conversations and really listening to what people have to say, and then having a way to be able to ensure that what an individual wants is something that you have got, and that you listen to.

I absolutely agree with Glyn about safeguards and all the things that we absolutely need to make sure are there, but the whole point of assisted dying is not to be paternalistic, but to respect autonomy. Whatever safeguards we put in with that, we have to be really careful not to ignore that right of autonomy, which is primarily what this Bill is trying to preserve.

I think it is about being really vigilant and listening. A primary role of a nurse is not to advocate their personal view, but to really listen to somebody else and to ensure that what they want is pursued. In all that discussion, it is really important that that does not get lost.

[Kim Leadbeater]

Q That is incredibly helpful, thank you. You are absolutely right to bring it back to patient autonomy—patient choice—so that, while putting all the safeguards in place, we are very clear that it is their genuine choice based on what they really want to do. It sounds as though you are saying—

[The Chair]

Order. Is there a question there?

[Kim Leadbeater]

Yes. It sounds as though you are saying that your professionals are trained to have those conversations, which is very reassuring. Glyn, do you want to add anything?

Glyn Berry: Just to say that I absolutely agree with Professor Ranger. My experience of working with palliative nurses, and nurses in general, is long, and I have historically had exceptionally positive experiences and continue to do so. I think that we learn from each other, and it is really important that we can have those conversations with the person and ask questions that they might never have been asked before, such as, “What is it that you want?”

Professor Ranger is absolutely right in terms of autonomy and the person having control, because once that diagnosis is given, it can be a downward spiral for a person and they feel that they lose control. Patients and families talk about that—about having no control over what is happening. In effect, that is true in terms of what is happening in the disease or illness trajectory, but it is so important to remind a person that they are still the person that they were before that diagnosis, that they will continue to be that person, and that they still have a voice. In both our roles professionally, and alongside other clinicians, that is what we seek to do all the time. That is why a multidisciplinary team approach is so important.

Ultimately, we could find that, once you have asked all the appropriate questions and you have put potential safeguards in place following conversations, a person may not choose that particular point to end their life—as you mentioned, Kim—and may continue to live to the end of their natural life.

[Sojan Joseph]

Q When the RCN Scotland director gave evidence to the Scottish Parliament during the discussion of the Assisted Dying for Terminally Ill Adults (Scotland) Bill, he expressed the RCN’s concern that there were not sufficient safeguards in place to protect nurses and nursing practice around assisted dying in Scotland. Are you satisfied that the Bill we have before us in England and Wales addresses those concerns, or would you like to see amendments to ensure that the mental health and wellbeing of nurses involved in the process are protected, should the Bill become law?

Professor Ranger: Yes, we would want to see more support and protection for nurses. Of course, in the exploring of assisted dying legislation in Scotland, the second clinical decision maker is a nurse—so it a doctor and a nurse, whereas in England and Wales we are looking at two medically qualified practitioners. We absolutely want to make sure that the skills and support is there for nursing staff, and the ability—as I heard our medical colleagues saying—to not be involved in assisted dying absolutely has to be supported. It cannot be an expectation of the role; it has to be something you choose to proactively take part in as a conscious decision. It cannot ever be just an expectation of a nurse. We are absolutely adamant about that. The Bill cannot just support the needs of medical staff—nursing absolutely has to be included within that, both in skills and support.

Terminally Ill Adults (End of Life) Bill (First sitting)

Kim Leadbeater Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[The Chair]

Good afternoon. In the Committee that I was in this morning, someone asked if they could remove their jacket, which seemed unbelievably spartan, but if any Member wishes to do so, they may. We are now sitting in public, so the proceedings at the present are being broadcast. Before we start, I have a couple of preliminary remarks. Please will you all turn off your mobile phones and other noisy electronic devices. I am also asked to remind you that tea and coffee are not allowed during sittings; if you want them, you will have to go outside.

We shall first consider the motion on the amendment paper tabled by the Member in charge of the Bill, Kim Leadbeater, which is to sit in private to consider matters relating to the sittings motion.

[Kim Leadbeater (Spen Valley) (Lab)]

I beg to move,

That the Committee do sit in private to consider matters relating to the sittings motion.

It is a pleasure to serve under your chairmanship, Sir Roger, and to be here for the first formal meeting of the Terminally Ill Adults (End of Life) Bill Committee. Ahead of the oral evidence sessions next week and the line-by-line scrutiny thereafter, we have two jobs to do this afternoon. One is to confirm the sitting times for the Committee and the other is to confirm the witnesses for oral evidence. Following discussions, I have taken the decision to have some of our sitting today in private. That is normal procedure for discussing witnesses and I think it is the right way to proceed, given that some of those discussions will probably involve conversations about the suitability of witnesses who are not here to speak for themselves. It would be inappropriate to discuss named individuals in such a way. Transparency is of course very important, but so is respecting individuals’ privacy. I hope that is clear to colleagues and to others.

I appreciate that members of the Committee and those viewing our proceedings may wish to know about the purpose and effect of this motion. Most Public Bill Committees are subject to programming, and the Programming Sub-Committee would discuss in private which witnesses to hear from. Similarly, Select Committees discuss in private which witnesses they will hear evidence from. Out of respect for the named individuals that we may call to hear evidence from, I propose that we discuss them informally in private. Once that informal discussion has concluded, the Committee will move back into a public session to formally consider the sittings motion. Any Member who wished to speak about the motion publicly or move an amendment would then be able to do so.

[Danny Kruger (East Wiltshire) (Con)]

It is a pleasure to serve under your chairmanship, Sir Roger. I look forward very much to the process of this Committee and to working with hon. Members to do what we can to ensure that a good Bill is presented back to the House.

I very much respect the points made by the hon. Member for Spen Valley. Nevertheless, I do have some real objections to the motion, which I encourage Members to oppose. The fact is that this debate was due to be held in public—in fact, people have travelled here in the expectation that they would be able to attend and observe our debate on the sittings motion—but last night, for reasons we do not fully understand, a decision was clearly made to table a motion that we sit in private. I would be grateful to understand why that decision was made so late.

My general point is that there is a clear public interest case. The public should understand why witnesses have been chosen and why other people have not, and if there are concerns about the witnesses, they should be aired publicly. This is the only time that the public are being consulted—that experts from outside Parliament have a chance to contribute to our deliberations. I fail to understand why those discussions cannot be held in public. The only argument that I can imagine—and the hon. Member for Spen Valley made it—is that Members might for some reason be uncivil or speak disrespectfully about potential witnesses, which I do not for a moment believe. I am sure that you, Sir Roger, or the other Chairs will keep us in order throughout our proceedings.

We are here to talk about the overall balance and particular qualifications of the witness list. Looking at the witness list that was presented this morning by the hon. Lady, I have very serious concerns, which should be aired publicly, about the list. It includes eight witnesses from foreign jurisdictions, who are being called to give evidence from abroad; all are supporters of assisted dying in their jurisdictions. There are no people speaking against the operations of assisted dying laws internationally. There are nine lawyers on the list—all of them, with the exception of three who appear to be neutral, in favour of a change in the law. There is not a single lawyer against this Bill. Sir James Munby was suggested, but I understand he has been removed. There might be a perfectly good reason for that, but he has spoken against the Bill.

There is nobody on the list from deaf or disabled people’s organisations, but the UN convention on the rights of persons with disabilities recognises the importance of engaging with such organisations in laws of this nature. With the exception of Dr Jamilla Hussain, there is no one on the witness list who can speak to the equality impacts of assisted dying.

--- Later in debate ---

[Danny Kruger]

I look forward to the opportunity to discuss the sittings motion, which I hope we can do publicly. On a general point about process, the Bill was written by a campaign group.

[Kim Leadbeater]

That is not true.

[Danny Kruger]

Well, it had a significant input.

[Kim Leadbeater]

On a point of order, Sir Roger. That is categorically not true. The Bill was written with senior legislative expertise, along with myself as a sitting Member of Parliament and with esteemed colleagues. I take that point of offence quite personally.

[Danny Kruger]

Well, I hope that the hon. Member—

[Danny Kruger]

I apologise, Sir Roger, and I apologise to the hon. Lady for causing offence. I hope she will not be offended when points are made that she disagrees with.

[Kim Leadbeater]

It is a matter of fact.

[Danny Kruger]

I am happy to withdraw the suggestion that the Bill was written by a campaign group, on the basis of the hon. Lady’s assurance that it was written by herself. I hope it is not the case that there was significant input from campaigners. I do not see why there should not have been; I just mention it because the Bill came to us with no formal consultation. There was no impact assessment—

[Kim Leadbeater]

On a point of order, Sir Roger. Surely we are having a conversation about whether we sit in private or not. Can we keep to that matter?

[The Chair]

Forgive me: I am in the Chair and I will decide—but the hon. Lady is absolutely correct. Once again, I am afraid that the hon. Member for East Wiltshire is straying very wide of the motion on the amendment paper. I would be grateful if he would now come to his conclusion so we can start to move forward.

[Danny Kruger]

I absolutely will. In fact, I will finish there. The points I have been trying to make are simply in the light of the fact that if the hon. Lady’s motion is accepted, the public will no longer have the opportunity to hear any of our points on the sittings motion—on the process that we will be decide on.

[Kim Leadbeater]

On a point of order, Sir Roger. That, again, is factually incorrect. We have already said that there will be a private sitting for conversations about individual witnesses, including some that the hon. Gentleman has already started talking about, and then we will open again to the public so that everybody can hear the Committee’s conversations.

--- Later in debate ---

[Kim Leadbeater]

I beg to move,

That—

(1) the Committee shall (in addition to its first meeting at 2.00 pm on Tuesday 21 January) meet—

(a) at 9.25 am and 2.00 pm on Tuesday 28 January;

(b) at 9.25 am and 2.00 pm on Wednesday 29 January;

(c) at 11.30 am and 1.00 pm on Thursday 30 January.

(2) during further proceedings on the Terminally Ill Adults (End of Life) Bill, the Committee do meet on Tuesdays and Wednesdays while the House is sitting at 9.25 am and 2.00 pm.

(3) the Committee shall hear oral evidence in accordance with the following Table:

[Naz Shah]

I beg to move manuscript amendment (b), after “General Medical Council”, insert “, Royal College of Psychiatrists”.

--- Later in debate ---

[Naz Shah]

Thank you, Sir Roger.

By adding Karon Monaghan KC, an eminent equality and human rights law barrister, amendment (e) would add balance among the lawyers in the Committee. I would also like to add James Munby, or someone from His Majesty’s Courts and Tribunals Service, because we need someone who can speak to court capacity issues in relation to the Bill. Professor Katherine Sleeman is a great expert on all these matters.

I am going through the list, and I am unclear what the Australian MP would add. If we remove the other two, there are other pro-AD Australian experts who will speak instead. If we replace those three, who are experts from—

[Kim Leadbeater]

On a point of order, Sir Roger. My hon. Friend has just mentioned two names that are not in her amendment, and I find that slightly confusing.

[Naz Shah]

These are replacements of the words in your paper.

--- Later in debate ---

[Danny Kruger]

All the names that the hon. Member for Bradford West has suggested were indeed submitted, I believe, to the hon. Member for Spen Valley ahead of the deadline that she put to us at the end of last month.

[Kim Leadbeater]

On a point of order, Sir Roger. All those names were not submitted.

[Danny Kruger]

The hon. Lady can feel free to intervene on me without troubling the Chair. I stand corrected if that is the case. We only received the final list this morning. It was necessary to make alternative suggestions ahead of that, which was done. I am now supporting the hon. Member for Bradford West in making suggestions for slight adjustments, as she suggests is all that is appropriate at this point. The list is unbalanced. I had to do a very quick analysis, and of the almost 60 names that have been put to us, 38 of them are in favour of the Bill and the principle of assisted dying, whereas there are only 20 who are opposed. There is an inherent imbalance there. It is only a quick analysis that has been done, and we will be able to do more of that subsequent to this sitting, but that is my impression.

--- Later in debate ---

[The Chair]

I now call the promoter of the Bill. I will then call the mover of the amendment.

[Kim Leadbeater]

I thank colleagues for their time this afternoon. It has been an extremely productive session. I am very proud of the tone of the debate: I think we have done a very good job, as we did on Second Reading, of showing this place in a good light.

I reiterate that there are a range of views in this Bill Committee, in the same way that there are a range of views across the House on this significant and deeply emotive issue. There are a range of views among the witnesses we will hear from, and I spent a huge amount of time ensuring that. Colleagues have given me more than 100 names of people they might like to hear from. I had my own list of people I would like to hear from, and many of them are not on the list of those who will give oral evidence.

I have tried to be extremely balanced, so we will hear from people with a range of views and opinions, but most importantly we will hear from people with expertise. That is the purpose of the Committee: to hear from people who can advise us on the detail of the Bill. We will go through this Bill line by line, and we need to hear from people who can help us to do that. We have some fantastic expertise on the Committee, but for many of us there are areas that we need to learn more about. It is important that the witnesses give us the information to enable us to do that, rather than—as numerous colleagues have said—once again going over the fundamental principles around assisted dying, because we did an excellent job of that on Second Reading.

At the end of our endeavours, we will produce a piece of legislation that will be re-presented to the House, and colleagues will again have the opportunity to vote on it however they see fit. There may be people in this room who vote differently from how they voted on Second Reading; there may be colleagues out there who do likewise, one way or the other.

I am very clear about this Committee’s role, which is to work on the Bill together, collegiately and collaboratively, irrespective of our different views, and re-present it to the House so that the House can continue to do its job. It is not just the Commons; the Lords will also have the opportunity to scrutinise the Bill and table amendments. I have always been open about the fact that this is about us working together. Where the Bill needs to be amended to make it more robust and alleviate people’s concerns, whether that is around coercion or capacity, that is now the Committee’s job. I stand ready to serve and to do that.

We have spent a lot of time this afternoon on this, and quite rightly so. As far as I am concerned, we are now in a position to move forward. I am very happy that we will hear from so many witnesses over several days, and I am happy that I have added more time to that so that we can hear from more witnesses, which I think is important. As colleagues have said, our job now is to get on with this really important piece of work.

[Naz Shah]

I thank my hon. Friend the Member for Spen Valley, the promoter of this Bill, because she has been very helpful. She has certainly added one of my key witnesses to her list, and I am grateful for that.

I want to respond to some of the points that have been made. One of the biggest issues for me is amendment (b), which would insert “Royal College of Psychiatrists”. My hon. Friend the Member for Ashford made the point that all psychiatrists come under the GMC, but not every member of the GMC is a psychiatrist. That speaks to the issue of coercion, mental health and capacity. That is the expertise that I am looking for in the line-by-line scrutiny of the Bill, and I would really like to hear from the Royal College of Psychiatrists.

I am happy to be guided by you, Sir Roger, because I am new to this process and I have not done a Bill of this nature before, but my only worry with the outside evidence and briefings is that they will not be on the record when we are looking at Hansard and seeing whether they have been taken into account. I would be happy to receive some assurance about that. Yes, we can organise lots of briefings and lots of experts, but does that not defeat the object of having this debate so robustly in the first instance?

The hon. Member for Harrogate and Knaresborough raised the issue of language, and the point about added value. I think that language is correct, because I do want to add value to this debate. I want value added, because it is important for my constituents that when I vote on the Bill on Report, I do so knowing that I have listened to all sides of the debate.

My hon. Friend the Member for Stroud asked whether this is a for-and-against argument. In particular, he said that we do not need to hear from those who are opposed, because we want to strengthen the Bill so that it can go through the House. Although I appreciate the sentiment, I put it to everyone that it is not about getting the Bill through; it is about getting the right information so we can scrutinise whether it is fit to go through the House. For that reason, it is important to hear from those who are opposed. It is naive to think that we only need to hear from people who are in support.

Terminally Ill Adults (End of Life) Bill

Kim Leadbeater Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

[Kim Leadbeater (Spen Valley) (Lab)]

I beg to move, that the Bill be now read a Second time.

Thank you, Mr Speaker, and thank you to everyone who is attending this hugely significant debate. It is a privilege to open the debate on the Terminally Ill Adults (End of Life) Bill, a piece of legislation that would give dying people, under stringent criteria, choice, autonomy and dignity at the end of their lives. I welcome the debate on this hugely important issue.

Let me say to colleagues across the House, particularly new colleagues, that I know this is not easy—it certainly has not been easy for me—but if any of us wanted an easy life, I am afraid we are in the wrong place. It is our job to address complex issues and make difficult decisions. I know that for many people this is a very difficult decision, but our job is also to address the issues that matter to people. After nearly a decade since the subject was debated on the Floor of the House, many would say that the debate is long overdue.

For my part, I have tried incredibly hard to ensure that the tone of the debate has been—and continues to be—robust, of course, but most importantly respectful and compassionate. I am pleased that, for the most part, that has been the case. I can be confident that that same tone of respect and compassion will be adopted by colleagues today, whatever views they hold. That is particularly important as we have people in the Public Gallery who have a strong personal interest in this issue. They hold a range of views. Some of them have lost loved ones in difficult and traumatic circumstances, and others are themselves terminally ill.

I want to pay a huge and heartfelt tribute to those families and to every single person who has contacted me about this issue, and in many cases shared their own very personal stories of loss and death. I know from my own personal experience of grief that telling your story over and over again takes energy, courage and strength. I am incredibly grateful to them all. It is their voices and their stories that have inspired me.

Such stories are difficult to hear, but it is vital that they are heard as they are at the heart of the debate. They show that the law is failing people. Where that is the case, we have a duty to do what is right to fix it. Those here today or watching at home are dealing with the real consequences of the failings of the current system. I will start by recounting just a few of their stories.

Warwick was married to his wife Ann for nearly 40 years. She had terminal peritoneal cancer, which meant that she could not breathe properly. She spent four days gasping and choking, remaining awake throughout despite being given the maximum dose of sedatives. She eventually died of suffocation. She had begged Warwick to end her life, but as he stood over her with a pillow he could not do what she asked as he did not want that to be her final memory of him. Ann had excellent palliative care, but it simply could not ease her suffering.

Tim fell in love at first sight when he met his wife Louise—he proposed after just three days. But Louise got cancer, twice, and at the end, the morphine simply could not control her pain. In desperation, she managed to smash a small glass bottle and tried to take her own life, not realising that her toddler daughter had got into bed with her. Tim found her. He says,

“You get to a point where you stop praying for a miracle and start praying for mercy.”

Former police officer James waved is mum off as she embarked on her final trip, to Dignitas. She had terminal vasculitis. James desperately wanted to accompany his mum and hold her hand during her final moments, but he knew, because of his job as a police officer, that it was just not possible. Indeed, she insisted that he must not go with her, so she went alone—no one to hold her hand, and no proper goodbye or funeral. Those are just a few examples of the heartbreaking reality and human suffering that far too many people experience as a result of the status quo. the public know this.

I have always been keen to ensure that my politics stays rooted in the world beyond Westminster. It is clear that public opinion is very much in favour of a change in the law. Polling shows consistently that around 75% of people would like to see the legalisation of assisted dying for terminally ill, mentally competent adults. These findings are significant, but it may not be that surprising that most people believe, as I do, that we should all have the right to make the choices and decisions we want about our own bodies. Let us be clear: we are not talking about a choice between life or death; we are talking about giving dying people a choice of how to die.

Let us examine what that choice currently looks like. I do not have a legal background but I have always been driven by a strong sense of injustice. If I see a problem, I will do everything I can to try to solve it. Indeed, in this job, we all do that every week and every day, whether here in Parliament or in our constituencies. When four former directors of public prosecutions, including the Prime Minister, two former presidents of the Supreme Court and many lawyers all agree that the law needs to change, surely we have a duty to do something about it.

Intentionally helping another person to end their life is currently illegal under the Suicide Act 1961, and carries a maximum prison sentence of 14 years. This includes family and friends helping someone who is terminally ill to die, both in the UK and overseas. Existing guidance does not stop people from being investigated by the police, adding fear, guilt and further trauma to grieving families. The law is not clear, and it does not protect individuals, families or medical professionals. That drives people to very desperate measures.

What about coercion? Senior King’s Counsel have said:

“There is currently no established system for identifying abuse or coercion in advance of a person’s death or for helping vulnerable people to make end of life decisions.”

[Kevin McKenna (Sittingbourne and Sheppey) (Lab)]

I have been a nurse for more than a quarter of a century, and in that time I have worked mostly in intensive care as a specialist. I have worked with compassionate and skilled, well-trained clinicians who have been taught to spot coercion—it is fundamental to our practice. Does my hon. Friend agree that it is wrong to suggest that clinicians cannot spot coercion in these cases?

[Kim Leadbeater]

My hon. Friend makes a very important point. I thank him for it, and for his years of service as a nurse. I have spoken to many medical professionals about this issue, and they say that this is part of their job. They are very skilled and they work closely with patients, particularly dying patients, to assess their needs and to have those difficult and delicate conversations. As the KCs said, at the moment we check for coercion in cases where people have taken their own lives—when someone is dead. The Bill would make coercion a criminal offence with a sentence of up to 14 years.

Surely, by putting a legal framework around this difficult situation, we will provide an extra level of safeguarding. One psychotherapist, who is terminally ill herself, said to me recently that coercion happens when things are hidden away. The Bill would bring things out into the open. Surely, that must be safer for everyone. Let us look at what the absence of a robust legal framework looks like.

[Simon Hoare (North Dorset) (Con)]

I thank the hon. Lady for giving the House the time to debate the Bill this morning. She references coercion, and I understand her point about the two medics, but medics will not be able to see or hear everything at all times. People will not be put beyond challenge, because subsequent to the death, if a relative claims coercion of another relative, investigation will remain. I am entirely unclear how, without peradventure, two clinicians can claim that there had been no coercion at any point.

[Kim Leadbeater]

The hon. Gentleman has made the point for me: within a robust system, we will check for coercion, but we do not have any of that now. At the moment, the person will be definitely be dead. We have to look at the status quo. Putting in layers of safeguarding and checking for coercion must be better than the system that we have now.

[Alicia Kearns (Rutland and Stamford) (Con)]

Colleagues are right to raise questions around coercion. I hosted a phone-in on LBC where people rang in and said, “I feel like I have to end my life because I recognise how difficult it is for my family to see me suffering.” The limit in the Bill, however, is that someone must have only six months to live according to two doctors and a judge, which I genuinely believe massively reduces the risk of coercion. Are we really saying that people are so desperate to bump off their families that if they were told that they had six months to live, they would escalate the process and do it sooner?

[Kim Leadbeater]

The hon. Lady makes an excellent point—she is absolutely right. The very strict criteria in the Bill add extra layers of safeguarding, which, again, we just do not have at the moment.

[Richard Burgon (Leeds East) (Ind)]

I have the deepest respect for my hon. Friend, but one thing that concerns me is societal or systemic coercion. At the moment, elderly people in our society pay thousands of pounds a month to be in a care home. What reassurances can my hon. Friend give that an elderly person in a care home who has been given six months to live would not think to themselves, “I’m a burden. I have been given six months to live. If I end my life now, I can save my family between £25,000 and £55,000”? That really concerns me.

[Kim Leadbeater]

As I have said, at the moment, we have no idea whether that person would take action because we are not having those conversations. By getting two medical professionals and a High Court judge involved, we would be putting this out in the open. Evidence from other jurisdictions shows clearly that coercion tends to happen the other way; what tends to happen is that families try to prevent the person from making the choice of an assisted death.

[Several hon. Members rose—]

[Kim Leadbeater]

I will take one more intervention.

[Wera Hobhouse (Bath) (LD)]

Is it not the case that the conversations that patients will have with doctors will bring out whether they have been coerced or are suffering intolerably? The criteria are about suffering, not whether somebody worries that they are a burden.

[Kim Leadbeater]

I agree absolutely. Those conversations, which are not taking place at the moment, are very important. I will make some progress.

There has rightly been a lot of discussion about palliative care in recent weeks, and I am convinced that a significant amount of that discussion would not have taken place without the introduction of the Bill. It is a long overdue conversation, and I am very pleased to see it happening.

I have met with the Association for Palliative Medicine, Hospice UK, Sue Ryder and Marie Curie, and last week I was delighted to attend the inaugural meeting of the all-party parliamentary group for hospices. I also attended the fantastic Kirkwood hospice, which serves my constituency of Spen Valley. I pay tribute to the dedicated staff and volunteers across the country in the palliative care sector, who do some of the most vital work in society. We must do more to support them, and I look forward to working with the Government and colleagues across the House in that important endeavour. That is why I have included in the Bill a requirement for the Secretary of State to report to the House on the availability, quality and distribution of palliative care.

Of course, assisted dying is not a substitute for palliative care—it is not an either/or. We have some of the best palliative care in the world in this country, and, when it can meet the needs of terminally ill people, it is second to none. However, when it cannot, surely the choice of an assisted death should be one component of a holistic approach to end of life care.

The comprehensive report by the Health and Social Care Committee, published earlier this year, found no indications of palliative care deteriorating in quality or provision in places where assisted dying had been introduced.

[Jim Shannon (Strangford) (DUP)]

Ever mindful of what the hon. Lady has said about the criteria, I remind her that Belgium started off with a simple project like the one she refers to but it deteriorated and expanded to include sufferers of dementia and under-18s—children. What guarantees do we have that this legislation will not end up with a situation like that in Belgium, in which case anything goes? Is that what the hon. Lady wants? I do not want that. Does she?

[Kim Leadbeater]

I thank the hon. Member for his intervention, but let us be very, very clear. Huge amounts of research has been done by the Health and Social Care Committee, and indeed by myself and others. The model being proposed here is nothing like what happens in Belgium. It is nothing like what happens in Canada. There are strict, stringent criteria, and if the House chooses to pass the Bill, those criteria cannot be changed.

[Mark Pritchard (The Wrekin) (Con)]

I am grateful to the hon. Lady for giving way and congratulate her on the measured way in which she has conducted this debate over the last few weeks. Whatever side of the House and whatever side of the debate, I would like to recognise that—it is not always the case. But is it not the case that the Bill crosses a new and irreversible medical red line for doctors and nurses? Is it not the case that in other Bills we have seen in this House over the years, the safeguards invariably become obsolete over time, and so the safeguards in this Bill, however well meant, should be seen as temporary safeguards and not immutable safeguards?

--- Later in debate ---

[Kim Leadbeater]

Absolutely not. I respectfully disagree with the right hon. Gentleman. In countries where a Bill of this nature has been implemented, the safeguards have been in place and the boundaries have never changed. I will come on to talk about that.

[Sir Oliver Dowden (Hertsmere) (Con)]

rose—

[Kim Leadbeater]

I will take one more intervention and then I must make some progress.

[Sir Oliver Dowden]

I thank the hon. Lady for giving way. I have a great deal of sympathy for the arguments she is making. However, we have seen, time and again, excessive judicial activism taking the words in this House and expanding their meaning into places we had not foreseen. What reassurances can she give that the words in her Bill will be respected by the judiciary and that we will not find ourselves in a decade’s time in a totally different place that this House did not intend?

[Kim Leadbeater]

I thank the right hon. Gentleman for his intervention. The courts have repeatedly put this issue back to Parliament. This is not their domain. This is the legislation. There are strict criteria.

Coming back to palliative care, in situations where pain simply cannot be managed, the result is deaths that are so horrific that the person themselves can spend hours, and in some cases days, in unimaginable pain as they die. I want to bring the debate back to the issue that we are trying to solve. For their loved ones, no matter how many joyful and happy memories they have, they also have the trauma that comes from watching someone you love die in unbearable agony and fear. That memory stays with them forever.

Rebecca’s mum Fiona developed metastatic brain cancer at the age of 69. She had very good palliative care, but her pain could not be managed, and she died begging and screaming for assistance to end her suffering. Her family and the medical team treating her cried beside her bedside as it took her 10 days to die.

Lucy’s husband Tom was 47, a music teacher with a young son. He had bile duct cancer which obstructed his bowel, resulting in an agonising death. Tom vomited faecal matter for five hours before he ultimately inhaled the faeces and died. He was vomiting so violently that he could not be sedated and was conscious throughout. Lucy pleaded with the doctors to help. The doctor treating him said there was nothing he could do. His family say that the look of horror on his face as he died will never leave them. Lucy now has post-traumatic stress disorder, which is quite common for families who lose loved ones in such harrowing circumstances.

[Rachel Taylor (North Warwickshire and Bedworth) (Lab)]

I thank my hon. Friend for the powerful and moving stories she is telling. A constituent of mine watched her mum suffer from pancreatic cancer. Unable to keep any food down, she basically starved to death. Does my hon. Friend agree that that is no way to see a loved one die? Does she also agree that we did not come into this place to shy away from difficult choices, but to listen to our constituents and make better laws for everyone?

[Kim Leadbeater]

I thank my hon. Friend for her intervention, and I am so sorry to hear that story from her constituency. We all have stories from all our constituencies, and she is absolutely right that we are here to make difficult decisions. On her example there, I have been astonished by the number of people who have been in touch with me to tell me about the terminally ill loved ones who have starved themselves to death out of desperation—something that takes far longer than we may imagine and is just horrific for everyone involved. That is currently legal, and doctors are required to assist the patient through this agonising process. How can we allow that, but not a compassionate and humane assisted death?

[Blair McDougall (East Renfrewshire) (Lab)]

I join the right hon. Member for The Wrekin (Mark Pritchard) in commending my hon. Friend for the way she has made sure that this binary debate has not been a polarising one. I started the debate where she is now, but I have moved to opposing the Bill by the stories I have heard of disabled people who have had “do not resuscitate” put on their medical records without their permission, or who have been stopped by strangers in the street and been told, “You would be better off dead.” I know she will say that we are voting on the specifics of her Bill, but we are also voting on a principle. Does she agree that there should be a precautionary approach, and does she honestly believe the legislative process gives us the time to be sure that we are making the right decision?

[Kim Leadbeater]

I thank my hon. Friend for his intervention and I will come on to some of those points later in my speech. Let us be very clear: the title of the Bill refers to terminally ill adults, not disabled people or elderly people, as another hon. Member referred to. The criteria are very clear.

I come back to the status quo, which is the problem we are trying to address. If people want to avoid the trauma of some of the harrowing circumstances I have described, they can have an assisted death—just not in this country. If they have £10,000 or £15,000, they can make the trip to Switzerland or elsewhere but, because of the current legal position, it is often a deeply distressing and very lonely experience, shrouded in secrecy, with people feeling like criminals as the fear of prosecution hangs over them.

Ilana’s husband Crispin had late-stage motor neurone disease. He was paralysed, and Ilana is a wheelchair user, but at his request she took him on a traumatic and difficult journey to Switzerland. She describes the intense stress and anxiety she felt due to the total secrecy of their plan—and we can only imagine what the journey home was like, on her own, with an empty seat beside her.

There are also those terminally ill people who take matters into their own hands. Gareth’s father Norman served in the Welsh Guards. He was a strong man, but his final five years were full of pain and discomfort. He had prostate cancer, which he lived with for 15 years. He was given good initial hormone therapy and chemo, but the cancer spread everywhere and the pain could not be eased. One day, when it all became too much, he went into his garden with the gun he owned and shot himself. Gareth’s sister rushed to his house and found him. Gareth said his father just wanted the pain to stop.

Then there is Peter, from Mirfield in my own constituency, who stopped me in a car park a couple of weeks ago to tell me the harrowing story of his beloved wife, who was diagnosed with metastatic cancer aged 52. The treatment was ineffective and her symptoms were unbearable. She took an overdose of her medication, and Peter found her and took her to hospital. She recovered and he brought her home, but the following day she made another attempt to take her own life, in a way that is too awful to describe. Peter found her dead, and he spent the next eight hours being questioned by the police.

It is estimated that more than 600 terminally ill people take their own lives every year. Often patients will store up medication. Josh, a 33-year-old from Huddersfield went to coach his local kids’ rugby team one Saturday and came back to tell his mum all about it. He found her dead. Lisa, who was terminally ill, had stored up her medication and taken her own life.

Our former colleague Paul Blomfield, the previous MP for Sheffield Central, has campaigned tirelessly on this issue since his dad Harry took his own life in 2014, alone in his garage, after being diagnosed with inoperable lung cancer. Language matters: Harry was not suicidal; he loved life, but he had watched too many of his friends have lingering, degrading deaths and he did not want that for himself. But, like the others, he could not tell Paul and his family of his plan, as they would have been complicit and could have faced prosecution. How many precious days and weeks did Harry miss out on as a result of having to take action while he was still physically able to do so? Hearing these stories is not easy, but it is important.

[Lloyd Hatton (South Dorset) (Lab)]

What I have been struck by in recent weeks as I have listened to Members from across the House is the clear agreement that the current situation is neither sustainable nor dignified. Almost everyone in this House agrees that the status quo is unacceptable in terms of dignity, palliative care and end of life. Given that, does my hon. Friend agree that today’s debate is about how we depart from the unacceptable situation that we currently face? Is today’s vote not the first stage of an important discussion about we improve the end of life for hundreds and hundreds of people across this country?

[Kim Leadbeater]

I wholeheartedly agree. I am setting out what we are dealing with now. This cannot be right, and surely we have a duty to do something about it.

[Wendy Morton (Aldridge-Brownhills) (Con)]

Will the hon. Lady give way?

[Kim Leadbeater]

I am going to make some progress, if that is okay.

Some of the most important voices in this debate are, of course, those of people currently living with a terminal illness. Having a terminal diagnosis is perhaps one of those situations where it is very hard, if not impossible, to know how we would feel. I have met many terminally ill people over recent weeks and every one of them is in my thoughts today.

Sophie, who is here today, was diagnosed with stage 4 secondary breast cancer, which has spread to her lungs, liver and pelvis. She is allergic to opioids, so she knows that her pain is very unlikely to be able to be managed. She has a 17-year-old daughter. All she asks is to have the choice to say goodbye to her daughter at a time of her choosing, in circumstances that she can have some control over, and for her daughter to be able to remember her as the vibrant, positive woman she is.

Nathaniel, who also joins us today, has stage 4 incurable bowel cancer, which is now in his liver and brain. Like many of us, Nat says that he does not know whether he would choose an assisted death or not, but he simply cannot understand why anyone would want to deny him the choice. He says:

“I wish to live as fully as I can and for as long as possible. But when the time comes”,

Nat also wants

“the right to die with dignity and compassion”.

Another very emotional lady came up to me at a recent interfaith event. She and her husband thanked me for putting the Bill forward. She said, “Kim, I am a proud Christian and I am guided by my faith. But I also have terminal cancer and I want the right to choose a compassionate death.”

There has been much discussion about the views of people who hold religious beliefs. I fully respect those beliefs and do not intend to say much more about this, other than that I know there are a range of views within faith communities. Indeed, some of the most powerful conversations that I have had have been with people of faith, including in my own constituency. People of different religions have said that although they would not choose an assisted death for themselves or their family, who are they to stop someone else who may want to make that choice?

[Barry Gardiner (Brent West) (Lab)]

Will my hon. Friend give way?

[Kim Leadbeater]

I will make some progress, if I may. I hope that I have set out the problem that clearly exists. Now allow me to set out how the Bill can address that problem and, most importantly, do so safely and effectively.

If the Bill were to become law, it would contain the most robust and strongest set of safeguards and protections in the world. Very strict eligibility criteria and multiple layers of checks and safeguards are embedded in the Bill, none of which, as we have seen, exist at the moment. I made a conscious decision to name it the Terminally Ill Adults (End of Life) Bill, rather than anything else. That title can never be changed and ensures that only adults who were dying would ever come within its scope. As such, the Bill is not about people choosing between life and death; it is about giving dying people with six months or less to live autonomy about how they die and the choice to shorten their deaths.

The Bill does not apply to people with mental health conditions. It does not apply to the elderly. It does not apply to people with chronic health conditions, and it does not apply to disabled people, unless, of course, they have a terminal illness, in which case they would and should be entitled to the same rights as anyone else.

[Daisy Cooper (St Albans) (LD)]

One group of people who are not often talked about are the learning disabled. Clause 9(3)(b) says that if an assessing doctor has any doubt as to the capacity of the person, they may refer them for a further psychiatric assessment. If the Bill is voted through today, will the hon. Member engage in a debate about whether that language should be strengthened from “may” to “must” and whether the training and experience required of the assessor should be strengthened as well?

[Kim Leadbeater]

The hon. Lady makes an excellent point and highlights a community who we must consider in light of the Bill. I would absolutely be open to that conversation in Committee; it is a very valid point.

There are different views within the disabled community. As Professor of Disability Research, Sir Tom Shakespeare says that it is unacceptable that people with disabilities continue to face social stigma and inequalities, but that it would be a mistake to conclude that we should oppose legalising assisted dying for terminally ill people until those wider problems are fixed. He says that it is paternalistic and wrong to imply that inequalities will be resolved by reducing choices, and that a clear, transparent legal framework for end-of-life choice is better for everyone. He is right. There is, of course, still work to do in the fight for equality for people with disabilities, but once again it is not an either/or. I will campaign alongside many others in this place for those rights, but I will also campaign for the rights of terminally ill people, because their rights are as important as anybody else’s rights.

[Barry Gardiner]

I have huge respect for the hon. Lady for the way that she has conducted this debate over the last few weeks. My concern is that she has focused today on the individual and the individual choice, but we are here to legislate for society as a whole. In legislating, what we are saying if we pass the Bill is that it is okay to take that choice—[Interruption]—and there will be some people who have six months of their life to go who will then feel, “Ought I to do this? Is this something that I now should do?” That brings into play a whole set of considerations—“Is it better for my family? Is it financially better for my family?”—in ways that, at the moment, are out of scope. Rather than simply focusing on the individual suffering, which we all recognise is acute, we must broaden the debate to the impact that the legislation will have on society as a whole.

[Kim Leadbeater]

I thank my hon. Friend for his intervention. I suggest that the Bill will give society a much better approach towards end of life. We are already hearing conversations about dying and death which I do not think we have heard enough in this country. We have to take a holistic view. Indeed, that is what happens in other countries and other jurisdictions. Having those deep and meaningful conversations about death and dying is really important. My hon. Friend’s comments bring me on nicely to the protections and safeguards in the Bill.

[Mr Toby Perkins (Chesterfield) (Lab)]

A decade ago, I voted against a similar Bill, because I felt that perhaps it was not perfect and there were more things that I needed to know. My hon. Friend is right that we have not talked about death for the 10 years since or considered any legislation. The truth is that if we vote against her Bill today, it will be the end of the conversation once again for another decade.

--- Later in debate ---

[Kim Leadbeater]

My hon. Friend is absolutely right. How many people will go through the situations I have described if it is another 10 years before we address this matter?

[Several hon. Members rose—]

[Kim Leadbeater]

I am not going to take any more interventions, I am afraid, because I am conscious that lots of hon. Members want to speak; I know Mr Speaker is conscious of that as well.

Under the Bill, any terminally ill person who wants to be considered for an assisted death would have to undertake a thorough and robust process involving two doctors and a High Court judge. No other jurisdiction in the world has those layers of safeguarding. The person requesting assistance must have mental capacity and a settled wish at every stage. That means they must repeatedly demonstrate that they understand the information relevant to their decision, the ability to retain that information, and to use or weigh that information as part of the process of making the decision. We know that capacity can fluctuate which is why it is assessed at every step of the process.

[Melanie Ward (Cowdenbeath and Kirkcaldy) (Lab)]

On that point, will my hon. Friend give way?

[Kim Leadbeater]

I am sorry but I am not going to take any interventions, as I need to make progress.

The court must speak to one of the doctors and can hear from anybody else they deem necessary. If there is any evidence of coercion, the court will not approve the request, and if evidence emerges subsequently, the court order could be revoked. It is also important to note that the person can change their mind at any time, with periods of reflection built in. Having consulted at the highest levels in the judiciary and the medical profession, I know that they can and will fulfil those safeguarding responsibilities and that they have the expertise to do so.

Let us be clear: as my hon. Friend the Member for Sittingbourne and Sheppey (Kevin McKenna) said earlier, this is not brand new territory for doctors. Doctors, working in partnership with other clinicians, are already required to manage complexity in end-of-life decision making. I followed the request of the British Medical Association that doctors should be under no obligation whatsoever to participate, but if they do participate, they will receive appropriate training and support. Doctors should be able to use their professional judgment when and if a conversation takes place, taking their cue from the patient, as they do for many other issues. I welcome that patient-centred approach. Many doctors feel the change in the law would safeguard clinicians and patients by making everything explicit.

When it comes to the detail of what assisted dying would look like, we have the benefit of drawing on the experience of 31 jurisdictions around the world. I could talk extensively about the international experience of assisted dying. The Health and Social Care Committee report did a brilliant job of that, and this Bill has looked at best practice as well as models which I and many others would not be comfortable with our having here in England and Wales.

Reflecting on their experience, clinicians in Australia say:

“through deep and meaningful conversations between doctors, patients and their loved ones we can dispel fear, reduce suffering, bring death and dying out of the shadows, and so allow patients and their families a better quality of life and quality of death”.

As one Australian Member of Parliament said:

“We have brought ‘behind-closed-doors’ practices into the open and given dying people meaningful, transparent choices. Crucially none of the fears that were put forward as reasons not to change the law have been realised. The status quo was broken and assisted dying works.”

Evidence from around the world shows that the option of having an assisted death actually lifts the fear that terminally ill people have, and that many never actually use it but are able to make the best of the time they have left due to the comfort and reassurance that it provides.

People talk about a slippery slope, but the Health and Social Care Committee found that not one jurisdiction that has passed laws on the basis of terminal illness has expanded its scope. [Interruption.] That is absolutely true. As the courts here and in Europe have repeatedly made clear, Parliament is sovereign. This Bill could not be made any broader through any judicial process.

Speaking of process, with reference to the Bill, having listened to what I know are genuine concerns of Members about ensuring that we get this legislation right, I commit to the House that if the Bill passes Second Reading today, which I sincerely hope it does, I am minded to move a motion that gives the Bill Committee the power to take oral and written evidence in order to ensure that a thorough approach continues to be taken. That is not normal procedure for a private Member’s Bill, but I think that that is the right thing to do. I also reassure colleagues that the Bill Committee will meet over a number of weeks, meaning that there is ample time for full consideration of the details of the Bill, including amendments. The Committee will be representative of the views and make-up of the House. Let me be clear: that will mean there will be representatives of different parties with a range of views on the Committee.

As the Leader of the House said at the Dispatch Box just yesterday, and has said several times, the Government will, of course, work with me to ensure that the Bill is workable and operable. That will quite rightly take time, and I have included in the Bill a commencement period of up to two years—this is not going to happen overnight. That timeframe can be explored in Committee, as it is more important to get this right than to do it quickly.

In conclusion, for the reasons I have set out, I am very clear that the law needs to change to give terminally ill people choice at the end of life and to protect their loved ones from fear of prosecution. There will be some of us here today who are lucky enough not to have personal experience of this issue, but sadly we know that any one of us could end up in this heartbreaking situation. We are all living longer, which is brilliant, and I have campaigned inside and outside Parliament for a greater focus on prevention and early intervention of illness and disease to keep us fit and healthy for as long as possible, but any one of us or our loved ones could be unfortunate or unlucky enough to receive a terminal diagnosis. I struggle to see how it is fair or just to deny anyone the autonomy, dignity and personal choice of taking control of their final weeks. And the right to choose does not take away the right not to choose. Giving the choice of an assisted death to those who want it would of course not stop anyone who is terminally ill from choosing not to make that choice.

Whatever happens today, I am incredibly proud of the work that my fantastic team and the many campaigners have done on this hugely significant, emotional and sensitive subject. We need to be clear: a vote to take this Bill forward today is not a vote to implement the law tomorrow. It is a vote to continue the debate. It is a vote to subject the Bill to line-by-line scrutiny in Committee, on Report and on Third Reading. Then, of course, the Bill will go to the Lords for what I have no doubt will be further robust debate and scrutiny. This will be a thorough process, focused on one of the most significant issues of our time—an issue that people across the country clearly want us to address, none more so than the many families who are facing the brutal and cruel reality of the status quo. Today is the beginning, not the end, of that process, but the debate can continue only if colleagues join me in the Aye lobby today. I wholeheartedly encourage them to do so, and I commend the Bill to the House.

--- Later in debate ---

[Several hon. Members rose—]

[Kim Leadbeater]

On a point of order, Mr Speaker. I seek your guidance on correcting the record. I said in my speech that I have consulted with the highest levels of the judiciary and the medical profession. I have received correspondence from the Judicial Office and wish to clarify my earlier comments. Although I have spoken to lawyers and judges, I should not have implied that the serving judiciary have in some way indicated their agreement with the Bill; they have not. The serving judiciary have been very clear that they have made no public comments about the Bill one way or the other. I apologise if I implied anything to the contrary.

[Mr Speaker]

I thank the hon. Lady for correcting the record.

Victims and Prisoners Bill

Kim Leadbeater Excerpts

2nd reading
Monday 15th May 2023 Commons Chamber

[Kim Leadbeater (Batley and Spen) (Lab)]

I am pleased that we are finally debating the long-awaited victims Bill today. Since I was elected almost two years ago, the victims Bill has been just one of a very long list of so-called Government priorities that have been delayed and delayed. That delay has meant thousands of victims will not have received the support or exercised the rights they should have been able to. As we have heard from across the House, the Government have come forward with a Bill that is only half-baked. What has taken them so long to produce such a flimsy Bill that will not, in its current form, deliver its stated aims?

First, why have the Government not included victims of one of the most damaging and victim-centred issues faced by so many people every day: antisocial behaviour? In Batley and Spen we have seen, as is the case in many other communities across the country, huge spikes in antisocial behaviour in recent years. Whether it is inconsiderate or dangerous parking, modified motorbikes screeching through neighbourhoods at all hours, abuse directed at bus drivers and shopkeepers, setting off fireworks or fires, the vandalising of community facilities or fly-tipping, all of which the Government somehow treat as low-level nuisances, these are the things that are blighting our communities and terrifying residents. They are increasingly unaddressed and out of control, with little or no support for those affected.

In the current Bill, victims of those behaviours are not recognised. They are not given the same rights as other victims and they will continue not to be taken seriously in the criminal justice system. Without treating antisocial behaviour with the seriousness it needs, our communities, including Batley and Spen, will continue to see the increase in lawlessness that is damaging our towns, villages and neighbourhoods. We cannot underestimate the impact of this so-called low-level activity. It damages property and terrifies people, and it means that residents feel afraid to walk their streets alone. They are certainly not seeing any justice that reassures them their neighbourhood is safe and, as my constituents tell me, there is nothing low level about that. I therefore strongly urge the Government to reconsider their approach to antisocial behaviour in the Bill, and recognise the damage it does to people and communities across the country.

Secondly, as has been discussed, the Bill does not have the teeth to deliver meaningful change. As the Justice Committee set out in its report, simply stating the victims code in legislation will not by itself ensure that victims receive the justice they deserve. Where are the measures to ensure that victims are aware of their rights? Who is checking that police forces and the CPS are carefully going through the victims code with victims to ensure they take up all the measures available to them? And, most importantly, where is the resourcing to give police forces the staff and time they will require to afford each case the attention it deserves?

I am very fortunate to have a strong working relationship with West Yorkshire police, and in particular the Batley and Spen neighbourhood policing team. Of the cases we discuss, the major barrier to ensuring that victims are supported, involved in the process and able to see justice being delivered is not legislation, but police time and resources. And let us remember that the new police officers that the Government like to boast about barely replace the police officers we have lost over the last 13 years. So until we properly resource our police forces, this legislation will be unable to function in the way the Government hope it will.

Finally, I would like to discuss victims of domestic abuse and rape. Victims of these crimes are perhaps the most let down by the criminal justice system. Less than 1% of reported rapes lead to a conviction. That is a horrifying statistic that should alarm us all. Colleagues will have seen the open letter sent to the Justice Secretary by the charity Rape Crisis and Charlie Webster, who, along with her friend Katie, was a teenage victim of sexual abuse over many years. Katie, as has been referred to already, tragically went on to take her own life. On the radio today, Charlie spoke about the disconnect between victims, the justice system and the Government. Jayne Butler, the CEO of Rape Crisis, said:

“I want to see a Victims Bill that gives victims and survivors what Katie and Charlie never had. If the government truly wishes to make a difference with this bill, it must provide the funding needed to support it.”

The demand for the services of Rape Crisis has gone up by 38% in the last year. Without the resourcing and wider reform of the criminal justice system, the Bill will prove meaningless. Without providing any new funding for victim support services, the Bill will fail to deliver meaningful change for survivors of domestic abuse, as the charity Refuge has stated. Independent domestic violence advisers and independent sexual violence advisers are fantastic, but I share the concerns of others on the importance of solidifying those positions and ensuring consistency of provision across the country.

Furthermore, I agree that it is horrifying that a victim’s counselling notes can be accessed to form part of a defence if a case of rape does go to trial. That should not be acceptable in any circumstances. It undermines the aims of the Bill to protect victims and it may well lead to a decrease in the reporting of cases of rape, which is already shockingly low. I will therefore be supporting amendments in Committee to address that and to provide victims with the protections they need in the criminal justice system.

In conclusion, I am pleased that we finally have before us a framework that can be built on to ensure that victims receive the rights and protections they deserve. However, in its current state the Bill is too flimsy, excludes too many victims and fails to address the underlying issue in our criminal justice system: the underfunding and under-resourcing of our police forces and courts system. I therefore urge Members to back our amendments in Committee to strengthen the Bill, which has the potential to deliver the long-overdue, meaningful change that victims of crime deserve.