Terminally Ill Adults (End of Life) Bill

Kit Malthouse Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

[Kit Malthouse (North West Hampshire) (Con)]

When I was a child, my parents shielded me from death. Centuries of art, literature and religion taught me that death was something noble or even slightly romantic. When I became an adult, I learnt pretty quickly that that was not the case. For far too many, it is anything but and certainly not noble. The deathbed for far too many is a place of misery, torture and degradation, a reign of blood and vomit and tears. I see no compassion and beauty in that, only profound human suffering. In 10 years of campaigning on this issue, I have spent many, many hours with dying and bereaved people, which has, time and again, reinforced my view.

I am a co-sponsor of the Bill and I am the co-chair of the all-party parliamentary group for choice at the end of life. I could give a speech to promote the Bill, but my hon. Friend—and I do call her a friend—the Member for Spen Valley (Kim Leadbeater) has done that remarkably well. In my speech I want to address some of the common issues that have been raised, and that will no doubt be raised during the debate, with which I struggle.

First, we will no doubt hear an awful lot about the overseas experience. I am married to a Canadian, and I can tell the House that they love their children just as much as we do. The idea that the Canadians, Australians, New Zealanders, Spanish and Austrians care little for their relatives, or indeed for the wider society in which they live, is frankly offensive. We should not pretend that somehow we are special or different. They have thought as profoundly on these issues as we have over the past 10 years. We can learn from them, and design a system for our own sensibilities and culture, as they have done. They all have different laws on abortion, some of which we would not pass in this House, but that does not mean we should not have abortion laws here. We are a 1,000-year-old democracy, and we should be able to design legislation that deals with this issue for ourselves.

The second issue that has been raised with which I have struggled regards the impact on the NHS and on judges. People are already dying; they are already in the national health service and entitled to care. Even if we think there will be an impact, are people seriously telling me that my death, my agony, is too much for the NHS to have time for, or too much hassle? It is even claimed that such matters would overload the judges—that I should drown in my own faecal vomit because it is too much hassle for the judges to deal with. We send things from this House to the NHS and to judges all the time. Is anyone suggesting that we should not create the new offence of spiking, which has come through this week, because judges are overworked? Of course not. They will cope as they have done with all sorts of things that we have sent from this House over the years, and we should not countenance the idea that some logistical problem will get in the way of our giving a good death to our fellow citizens.

I also want to address directly those Members who are considering voting against the Bill, to ensure that they are clear in their minds that a vote against the Bill is not a passive act. There are two states of being on offer today. I have to break some news to Members: whatever happens to the Bill today, people with a terminal illness will still take their lives. If the Bill falls today, we will be consigning those people to taking their lives in brutal, violent ways, as they are at the moment, and will see increasing numbers of our fellow citizens making the trip to Switzerland if they can afford it. We know that between 600 and 700 people a year are killing themselves in violent ways—shooting themselves, throwing themselves in front of trains, taking overdoses in lonely, horrible circumstances. As I said, many are going to Switzerland, but more than that are lying in hospital—I guarantee that there will be somebody over the river in St Thomas’ hospital now who is refusing treatment and starving themselves to death because they cannot face what is in front of them.

[Sam Rushworth (Bishop Auckland) (Lab)]

Does the right hon. Gentleman agree that we had a choice today? We have come here to debate assisted dying, but we could have come here to build cross-party consensus on how finally, once and for all, to fix palliative care in this country. We could have come to look at a funding consensus, as that does need to be cross-party. I agree with his point that voting no is also a choice, but what follows from that should be a cross-party consensus on how we fix palliative care.

[Kit Malthouse]

I agree with the hon. Gentleman, and what a surprise it is that the conversation about palliative care has started. We were not having that conversation before this Bill came forward. The evidence from the Health and Care Committee, published only in February this year, shows that palliative care and assisted dying go hand in hand.

[Mr Perkins]

rose—

[Kit Malthouse]

I will not give way.

Improvements also go hand in hand; medics from across the world told us that the two things are complementary. In Australia I discussed this issue with a palliative care doctor who was against the introduction of assisted dying when they were contemplating it. She now finds it an invaluable tool, and she embraces it as something that her patients want and need. My concern is that if the Bill is turned down, as it was in 2015, the conversation about palliative care will wither, as it has done for the past 10 years.

I want to share a story that has particularly affected me. Mark Crampton was a former police chief inspector who was suffering from chronic obstructive pulmonary disease. His COPD became too much for him, so he informed his family that he was going to take his own life. He took his oxygen tank and mask and late one night went out and sat on a railway embankment. He wanted a death that was instant and quick, and that he could rely on. He waited until 2 in the morning—heartbreakingly, he had worked out when the last train was going, so he would minimise disruption to the public—and then took his life in lonely circumstances in the middle of the night. By not passing the Bill, we would deny to Mark supervision, conversation, access to doctors, periods of reflection, advice. Even if he had been through all that and decided it was still too much, the Bill would give him a much better end than he actually achieved. Members should be clear, as I say, that whatever happens to the Bill, terminal people will still take their lives.

I have to say to the hon. Member for Brent West (Barry Gardiner), who says that hundreds of people dying in agony every year is a price worth paying for the good of society, that I find that an appalling prospect. A society that looks away from these people —like those in the Public Gallery who are living in terrible fear of what will face them, or who have watched their families die in fear—and says that that is okay for the good of the whole is a terrible, terrible prospect. We have a duty to assist them, as other countries around the world have done, and to find a way to make them comfortable in the end.

[Mr James Cleverly (Braintree) (Con)]

Will my right hon. Friend give way?

[Kit Malthouse]

I will not.

Finally, I want to talk briefly about rights. We hear a lot about rights in this debate—quite rightly. We hear about the rights and fears of the disabled community, who are specifically excluded from the Bill; we hear a lot about the rights and fears of the elderly, who are also specifically excluded from the Bill; we are even hearing about the rights of doctors, who are allowed to conscientiously object to participating in this process, if they wish. When are we going to have the conversation about the rights of the dying? Where do we put them in the ranking of rights, as they face their end? When do we grant them the autonomy and choice for which so many of them have campaigned over the years? Surely, as they come towards the end of their life, their rights have to be at the forefront of our mind. The last, best gift we can give them is control over the disease that is destroying them.

If we do not pass the Bill today, we are cornering all those people; we are trapping them, with the law, in their disease, and consigning them to an end of torture and degradation that they do not wish to go through. As I said before, we are a 1,000-year old democracy. It is not beyond us to design legislation that will give those people what they want, while protecting those whom we feel need to be protected. Like my right hon. Friend the Member for Sutton Coldfield (Mr Mitchell), I want this choice for my constituents, but profoundly I want it for myself and for the people in the Public Gallery who have worked so hard over the past decade to get us to change our minds.

I ask Members please to be clear that whatever happens today, terminal people will still take their own lives—all we are deciding today is how.

[Several hon. Members rose—]

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[The Parliamentary Under-Secretary of State for Justice (Alex Davies-Jones)]

This Second Reading debate on the Bill sponsored by my hon. Friend the Member for Spen Valley (Kim Leadbeater) provides the House and the country with an opportunity to discuss this complex and sensitive issue. I make it clear that I stand at the Dispatch Box today not as the MP for Pontypridd representing the views of my constituents, although I thank each and every one of them who took the time to contact me with their considered opinions. I stand here today as the Government Minister responsible for the criminal law on this issue in England and Wales, contained in the Suicide Act 1961.

As the Government remain neutral on this topic of conscience, and out of respect for my ministerial colleagues who are not able to outline their views in today’s debate, I will not be sharing my personal opinions on this matter. I will, however, be taking part in the vote. With all that in mind, I will keep my response brief and not take any interventions. The Government are of the view that any change to the law in this area is an issue of conscience for individual parliamentarians. It is rightly, in our view, a matter for Parliament rather than the Government to decide. Accordingly, the Government Benches will have a free vote should the views of the House be tested today.

If the will of Parliament is that the law in this area should change, the Government will of course respect their duty to the statute book and ensure that any Bill is effective and its provisions can be enforced. I thank my hon. Friend the Member for Spen Valley for bringing this important national conversation to the fore and for conducting her campaign with respect and integrity. I pay tribute to the campaigners on both sides of the debate, including Dame Esther Rantzen, Liz Carr, Nathaniel Dye and Baroness Grey-Thompson. They have all used their voices to advocate for what they believe and have contributed significantly to the important national conversation around death.

Regardless of views, the one thing we have in common is that we will all experience death at some point. Death is a topic that we do not tend to talk about very much, but these discussions have undoubtedly enabled families up and down the country to talk openly about their wishes and how they feel about their own death. That powerful honesty is a tribute to how Members of this House and campaigners have conducted themselves throughout, and I thank them for informing today’s debate.

[Kit Malthouse]

claimed to move the closure (Standing Order No. 36).

Question agreed to.

Question put accordingly, That the Bill be now read a Second time.

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

Kit Malthouse Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Kit Malthouse (North West Hampshire) (Con)]

But we will be coming back to public—

[The Chair]

Order.

--- Later in debate ---

[Kit Malthouse]

I was going to make exactly the same point. I think my hon. Friend the Member for East Wiltshire has fundamentally misunderstood what is happening. He referred to there being a discussion through the usual channels. What the hon. Member for Spen Valley has proposed is that we have that discussion now—she said informally—because we have not had the chance to do so before, and that we then return. Then my hon. Friend is free to say whatever he likes about whatever witnesses and table his own amendments as he wishes. There is no intention to conceal anything. If I might be so bold, I think he has misunderstood the process.

[Naz Shah (Bradford West) (Lab)]

Just following on from the speech of the right hon. Member for North West Hampshire, I would not read the situation as a misunderstanding by the hon. Member for East Wiltshire. I read the motion to sit in private not as an informal discussion, but as a very formal discussion. I am grateful to the lead Member for the Bill, my hon. Friend the Member for Spen Valley, who before this meeting explained to me what has now been explained here—about the issue of people’s availability, privacy and so on. But I do not suspect that we will be going into those details. If people are not available, we do not have to discuss why they are not. We do not have to discuss their personal lives. I am not sure that that is a good enough reason not to have a discussion in public. I trust colleagues across the Committee to be collegiate enough and big enough to refer to witnesses with respect. I think that is a given, considering the way in which we have conducted the Bill so far. I therefore do not support the motion to sit private.

--- Later in debate ---

[The Chair]

The hon. Lady may deal with amendment (i) and with the hon. Gentleman’s proposal. At this stage, let me simply call Kit Malthouse to speak to amendment (b).

[Kit Malthouse]

I rise to speak to amendment (b) and to the other amendments tabled by the hon. Member for Bradford West. As we discussed in private, I am concerned that the promoter of the Bill, the hon. Member for Spen Valley, has been through an extensive period of trying to collate everybody’s recommendations for the Bill and reach a list that is both manageable within the timeframe and a compromise for all of us on what we would like to see.

The odd adjustment here and there is fine, but we ought to bear in mind that in any one session we need to have sufficient time for people to speak. We have to be careful not to double up because we may or may not think that a particular witness might propose a view with which we are sympathetic, when we already have people who are covering the same subject. On amendment (b), for example, all psychiatrists are regulated by the General Medical Council, as I am sure the hon. Member for Bradford West knows, so effectively the royal college is a doubling up of expertise, which is not necessarily in the interests of time. Similarly, in amendment (c), the hon. Lady is proposing a physician from Canada—

[Naz Shah]

rose—

[Kit Malthouse]

I will just finish, if I may. Our Bill is built on a very different legal framework from Canada’s. Drawing legislative parallels between the two seems like a cul-de-sac, not least because, as the hon. Lady will know, the legal framework in Canada is dictated by the charter of rights and freedoms, effectively a constitution, which has been used there to widen the scope of the law. Canada started from a very different place as well, so I am not totally convinced.

What the hon. Member for Spen Valley has tried to do with the list is to find overseas territories that are analogous to our own and have adopted a model similar to ours. We are therefore trying to learn lessons from the process of debate and legislative procedure that they went through—either to learn from them or to learn from their mistakes. For example, knocking out the Member of Parliament from Australia would be a mistake, not least because Australia has been through a number of iterations with its law. Most of Australia has a bar on doctor initiation of the conversation. The medical profession think that that is a big negative in Australia, as I understand it, so I would like to understand why, politically and in legislation, it was felt that that was needed or helpful, and why it was imposed.

On the other amendments, the hon. Member for Bradford West is making a value judgment about comparative expertise between Amanda Ward and whoever she wants to propose instead—Philip Murray. I do not know why she is making that value judgment, but as far as I can see, the names were properly submitted in the process. The hon. Lady obviously had the chance to submit names during the process. For better or worse, as she may see fit, the hon. Member for Spen Valley has come up with a list that is a compromise. That is not to say that the hon. Member for Bradford West cannot arrange briefings with any of these experts outside the formal process, for Members to attend should they so wish, or that she cannot seek advice from them during the process of the Bill.

My primary concern about the amendments is that we are opening up a whole area of debate where we could all have gone with our suggestions. I would rather stick with the list that we have, because I fear that the hon. Member for Bradford West is doubling up and making value judgments about expertise that are not necessarily warranted.

[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.

Terminally Ill Adults (End of Life) Bill (Money)

Kit Malthouse Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Kit Malthouse (North West Hampshire) (Con)]

I rise to support the money resolution, broadly for two reasons. The first is the significant risk to the reputation of the House. One of the greatest criticisms of this place is that we play games and do not take these issues seriously. We all accept that, as my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) said, a money resolution is normally a technicality for private Members’ Bills. If the Bill fell at this moment, we would not only deny debate to those Members who expressed either soft opposition or soft support for it on Second Reading, but strike a hammer blow to millions of people in the United Kingdom who are looking to us for a sense of leadership and clarity on this issue.

I hope that there will not be a Division today, but if there is, I urge Members to vote in favour of the resolution. Those Members thinking of voting against should bear in mind that the message that would go out from this place would be that a matter of life and death—a matter fundamental to many people, and on which there are profound feelings on both sides of the debate, as we have seen—can be dismissed on the basis of a casual, technical vote on a quiet Wednesday afternoon. That would be a bit of a travesty. I hope that Members realise what is reputationally at risk.

Secondly, there is broad misunderstanding of what the Bill is designed to do. The hon. Member for Ribble Valley (Maya Ellis) said, in effect, that the money resolution offers a blank cheque. Well, the rest of the NHS is already a blank cheque. Over the years, things have evolved in such a way that Parliament gives Government Ministers permission, through estimates, to make judgments about how they prioritise spending on the services for which they are responsible; and the Chancellor makes judgments about spending for Departments. If this House starts micromanaging spending—saying what the Government should spend on particular drugs, treatments, crimes or interventions—we will end up in an unholy mess. I have yet to hear anyone in this House object, for example, to the creation of a new criminal offence on the grounds that it would be more costly for the police. I have yet to hear anyone in this House object to the NHS prescribing a new drug because it will be costly for the health service.

We must remember that the people we are talking about—the dying individuals who may want to make this choice at the end of their life—are already receiving treatment in the national health service. They are already reliant on expensive care services, drugs and so on, as well as social support mechanisms that cost the taxpayer. It is, of course, important that we see the overall impact assessment, but we should not pretend that the status quo is cost-free, because it is costly—not only in monetary terms, but in terms of humanity. We should not forget that we are attempting to put a price on quality of life, and on mercy at the end of life. I urge Members to reflect on that and support this motion.

Finally, let me address the misunderstanding by the hon. Member for Strangford (Jim Shannon). There was no attempt yesterday to create any air of secrecy about consideration of the Bill in Committee. There was a brief period in which we had hoped to have an informal discussion about witnesses, before the public sitting resumed, which is normal for Bill Committees in these circumstances. Unfortunately, that has been misconstrued, but I guarantee that the rest of proceedings will be open for the public to view.

--- Later in debate ---

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Thank you, Mr Shannon, for letting me know you would be making a point of order. The Chair is not responsible for the content of Member’s speeches, but I remind the House of the advice in Erskine May on the importance of good temper and moderation in parliamentary language.

[Kit Malthouse]

Further to that point of order, Madam Deputy Speaker. There was no intent in my remarks to undermine the integrity of the hon. Member for Strangford (Jim Shannon). I may have misunderstood his remarks, but he implied that the Committee was adopting some kind of veil of secrecy over our affairs and I was pointing out to him that, in my view, that was a misunderstanding of what we were attempting to do yesterday. I am sorry if the hon. Gentleman was offended, as he knows I hold him in great affection and I had no intention to do so.

[Madam Deputy Speaker]

Thank you, Mr Malthouse. I can see Mr Shannon nodding, so hopefully your apology has been accepted.

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

Kit Malthouse Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sean Woodcock (Banbury) (Lab)]

Q The issue of coercion came up with our previous witnesses, and they were talking about GPs, doctors and nurses being able to spot it because of their level of training, experience and so on. How frequently does coercion, or lesser versions of it, such as familial pressure and societal pressure, come up in the day-to-day life of a medical practitioner? Is it like the asbestos awareness training that I had in a previous job—something I had to have because I might very rarely bump into asbestos—or is it a tick-box exercise?

Dr Green: You are right: all medical staff have safeguarding training, and of course patients make important decisions often with the influence and help of their family members. Usually this influence is helpful, and it almost always comes from a position of love. The point at which such influence becomes coercion is difficult to find out, but my experience is that it is rare. I would recommend that you look at what has happened in other parts of the world that have more experience with this, because they have it as part of their training modules. Certainly, we would expect capacity and coercion training to be part of the specialised training that doctors who opt in would receive. I anticipate that the general safeguarding training should be sufficient for other doctors, who would obviously only be involved at that very early stage.

[Kit Malthouse (North West Hampshire) (Con)]

Q I have been searching for parallels in current practice, and one that seemed close to me was if I wanted to donate an organ—say, a kidney—to a relative. As I understand it, a doctor can raise that possibility, even if I have not thought of it at the front end of that family decision, and coercion and capacity are then assessed later via a trained individual. Do you think it would be possible to translate both of those into this situation?

As I understand it, the General Medical Council already has guidance on dealing with assisted dying if it is raised by a patient, and how doctors should handle that. How easy would it be to translate that guidance—the process struck me as something that does not hinder but also does not enable—into something more informative?

Mark Swindells: It is important to note that our guidance on assisted dying is framed in the current law, so it guides doctors to explain that it is not lawful for them to assist their patient to die. It talks about the importance of explaining other available treatment options, including palliative care; making sure that the patient’s needs are met; and dealing with any other safeguarding matters. Oure guidance does follow the law, so if the law were to change, we would obviously attend to that. It is not framed quite as you are suggesting, so I do not think that would lift and shift into what the guidance would need to be for doctors if this were to pass.

Dr Green: I do not have any experience with what you are describing, but it would certainly make sense to look at best practice in other areas.

[Kit Malthouse]

Q You are clear, though, that doctors should be free to have an open discussion with their patients about the whole variety of possibilities or paths that may be available to them as they face a terminal disease?

Dr Green: As a general principle, I do not believe that unnecessary barriers should be put in the way of communication. This is such an important area for patients that it is vital that they form a good, trusting relationship with their key medical adviser, who would usually be a doctor. I also have to say that at the end of life, we depend a lot on our specialist nurses— Macmillan or Marie Curie nurses—and it might well be that they are the person whom the patient trusts most. Please do not put barriers in the way of understanding.

[Kit Malthouse]

Q In the run-up to Second Reading, we heard from some of the overseas experience that where there was effectively a gag clause on doctors, it was proving to be extremely difficult, and the medical profession felt that that was a big barrier to discharging its duties. Would you recognise that?

Dr Green: Indeed. I believe that in New Zealand—and I think in the state of Victoria, but I would need to check that—there have been official reviews that have identified those concerns, and they are looking to review the legislation.

[Danny Kruger (East Wiltshire) (Con)]

Q It is noteworthy that in Australia and New Zealand, palliative care professionals are very keen on retaining that safeguard, to ensure that it is not suggested to patients that they might have an assisted death unless they have brought it up themselves.

I would like a quick clarification from Dr Green. In terms of the survey, my understanding is that the British Medical Association’s official position is to be neutral. The majority in favour of neutrality—moving away from an opposed position—were junior doctors and those not working with the elderly and the dying, whereas the great majority of doctors who work in palliative care and work with dying people remain firmly opposed to a change in the law. Is that your understanding?

Dr Green: There were some variations between specialities; that is true, but within all specialities, there was a wide variety of opinion. It is that wide variety of opinion that the BMA has based its policy on.

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[The Chair]

As we still have a little time, I will call Kit Malthouse.

[Kit Malthouse]

Q I just want to clarify the referral issue. As I understand it—I may have it wrong—your 2013 guidance on medical practice and personal beliefs says that doctors should refer, in cases such as those of abortion, to a colleague or service provider rather than a general information source.

Mark Swindells: I do not believe that we use the word “refer”, but I will double-check. The word “referral”—this is part of the BMA’s position—has a particular meaning in the world of medicine. We talk about the importance, from a patient perspective, of not being left with nowhere to go, so there is some professional responsibility on the doctor to guide.

[Kit Malthouse]

Q I understand the BMA’s concern, but my concern is about saying, “Here’s a leaflet—you’re on your own,” or “You can get information from this place.” For somebody who is in extremis at that point in their life, that might prove a significant barrier. Would doctors reflect that in their sense of responsibility towards the patient? Should we leave that open rather than having what is currently in the Bill?

Dr Green: We would expect that to be done with sensitivity.

[Kit Malthouse]

Right, so professional judgment again—

[The Chair]

Order. We have come to an end, but you may complete your sentence, Dr Green.

Dr Green: That was my complete sentence.

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[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.

[Kit Malthouse]

Q Professor, I want to test a little further the notion of a separate organisation that you mentioned. I can understand a separate discipline emerging, acquired by training, which is what happens in palliative care at the moment. We heard from previous witnesses that simplicity in safeguards is key, and in particular from the CMO that we have to avoid the last 6 months of someone’s life being a bureaucratic nightmare. At the moment, within palliative care and palliative nursing generally, you are already dealing with patients who are electing to refuse treatment, food and water, or are supporting patients following an advance directive. If you are supporting people in those circumstances as they move towards their death, do you think that it could be absorbed within the current functions, rather than having a separate organisation?

Professor Ranger: It is difficult. If I am honest, we have probably not explored that enough within our thinking as a college. We know what we would not want to see, which is a situation where there is an expectation that it becomes part of a pathway. It has got to be something you actively seek and opt into. I think how that is administered probably requires more thought, if I am honest, but I would not want to see it becoming an expectation of a pathway, because then the pressure on the individual may change. That is something we need to safeguard against.

I am worried that we should not make it so bureaucratic for the individual that it becomes impossible to have their autonomy respected, but how that happens is something that needs further exploration. We would fully support making it as clear and unbureaucratic for the person as humanly possible. But we would not want to see it as a sort of pathway within our current setting, because there could then be a sense that this is something that is externally influenced rather than being something that someone actively seeks for their autonomy.

[Danny Kruger]

Q You have done this very powerful report, the “Last Shift”, and talked about the moral injuries—a very powerful phrase—felt by nurses in the light of shortages in care in the NHS and social care. What should a nurse, or indeed any health professional, do in circumstances where a patient is requesting assisted dying and qualifies for it, when that professional thinks that what they really need is palliative care, but that is not available because of the shortages in the palliative care system?

Professor Ranger: It is difficult, but in my experience there are ways to try and get people palliative care, whether that is, as was said earlier, via other organisations outside the NHS and within hospice care. There are ways through the current routes to get people the care that they need.

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

Kit Malthouse Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Danny Kruger (East Wiltshire) (Con)]

Q I will ask you one quick question, Dr Cox. Dr Clarke said that the capacity assessment was poorly conducted. Do you think that the threshold is appropriate, using the Mental Capacity Act 2005? Assuming that we could conduct these assessments adequately, do you think that the threshold is safe?

Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.

The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.

The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?

In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.

[Kit Malthouse (North West Hampshire) (Con)]

Q I want to pursue that point a little with you, Dr Cox. My understanding is that your profession is already taking these decisions, or supporting patients to take these decisions—for example, the withdrawal of ventilation for an MND patient towards the end, or if I decide to decline treatment or food and water to end my life as quickly as I can. Presumably, you already have guidelines or training about assessing coercion and capacity in those circumstances. I think in some—for example, advance directives—you are legally obliged to comply with a patient’s wishes. Are those guidelines and safeguards broadly translatable across into what, from my point of view, is another choice that a patient may make to end their life?

Dr Cox: There are two differences that I would identify. The examples you give are of somebody who may be naturally dying and is being kept alive, so the difference is that you are withdrawing a treatment; you are not intentionally killing them. This is the first difference with assisted dying.

The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions—they are safer and more robust. Secondly, the moral distress associated with these decisions is much less if you share them. That is also a worry for me—what happens to the moral distress of the co-ordinating doctor and the other assessing doctor? They are carrying a lot of moral distress. My understanding is that a very small percentage of doctors will want to engage with this—maybe 1% or 2% of all doctors will want to be in those assessing positions. They are carrying a lot of that distress because they will be doing a lot of assessing.

[Kit Malthouse]

Q Understood. My other question is for all of you, but particularly Dr Clarke. You have mentioned autonomy a number of times. The Bill is trying to pass autonomy to the individual at a particular moment at the end of their life. It feels to me that the picture painted currently is a largely unregulated one. Dr Clarke, I think you said that there are no regulations or guidelines about what is going on. As my colleague Sarah Green said, there is no monitoring or measuring of what is going on. In general terms, given that patient autonomy is at the centre of this, would you welcome a set of rules that is understandable by patients and doctors, rather than what we have at the moment, which is—casual is not the right word—an ad-hoc negotiation at the time, depending on what the patient wants to do?

Dr Clarke: I think that is not quite right, and certainly not what I intended to convey. There are rules. There are very clear legal and professional rules and guidance and protocols around how to have these conversations. However, in practice, the quality of the conversations is contingent on the confidence, expertise, training and background of the individual clinicians having the conversations. There can be a great deal of inter-doctor variability in how conversations are conducted. In terms of addressing that, I would suggest that in an assisted dying scenario the crucial thing is to make the guidance and training as robust as it possibly can be to reduce the inter-practitioner variability.

[Kit Malthouse]

Q Sorry to interrupt you, but I am conscious of the time. We heard this morning how vital training is; I think that is broadly accepted from a number of voices. I want to question you about the issue of the choice people face. I understand the point you are making about the variable state of palliative care versus the choices people face, but that is quite macro. Day by day, patients are facing a choice about what is ahead of them in the next few months. I would not want to put words in your mouth, but I presume you are not saying that, for the good of the whole, they should go through an awful death that they do not want to go through while we wait for palliative care to catch up.

Dr Clarke: No, of course not.

[The Chair]

Order. We have half an hour left. Nine people have asked questions and there are eight people left who want to. If we want to get through the questions by 3.15 pm, people will have to be self-disciplined when they ask their questions.

To the panel, forgive me, but we need answers in as reasonable a time as possible given the circumstances. Dr Clarke, if you wish to answer the last point, feel free.

Dr Clarke: Of course we want as much autonomy for as many patients as possible. The issue is around safeguards. If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, “Have you thought about assisted dying?”, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, “God, is this doctor telling me that my life is not worth living any more?” Autonomy is much more subtle and complicated than we assume from outside.

--- Later in debate ---

[Dr Tidball]

I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.

I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.

[Kit Malthouse]

I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.

Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.

[Lewis Atkinson]

I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.

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

Kit Malthouse Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q Dr Fellingham, to circle back to the issue of training, could you go into more detail about what the initial training consists of—the nature of it and the number of hours—and how that compares with the refresher training? What is the system for mentorship, supervision, appraisal and continuing professional development requirements?

Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.

To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.

Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.

Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.

We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.

In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.

[Kit Malthouse (North West Hampshire) (Con)]

Q Could you talk us through eligibility with regard to neurodegenerative diseases, and whether you have in place any variations and considerations for things such as Parkinson’s or motor neurone disease? Is the main delivery mechanism for VAD in Australia the mainstream health service, or is it delivered through a separate wing, arm or organisation?

[The Chair]

Who is best qualified to answer, please?

Dr McLaren: Greg, I might dob you in for the neuro-degenerative perspective, if that is all right? I have been involved in several of those cases but, as a medical oncologist, it is a little outside my field.

Dr Mewett: In most Australian states, the law was made so that a patient was eligible if they had a terminal prognosis of six months or less, except in the case of a neurodegenerative disorder—the most archetypal would be motor neurone disease, but there are a number of other neurodegenerative disorders for which prognosis can be made, including Parkinson’s—in which case it was 12 months or less. We have been trying to tease that out as part of our Victorian VAD review board work, and we could not find the logical or consistent reason why there would be two different prognoses for different disorders. We think it was because the advisory to the legislators thought that patients with neurodegenerative disorders might lose capacity to continue with the process earlier.

We and all our learned colleagues know, however, that patients with all sorts of diseases can lose their cognitive abilities during their disease, particularly with cancer and motor neurone disease. We do not see that as logical or reasonable. In fact, as Dr McLaren said, we are considering recommending that prognosis is set at 12 months, which is what Queensland legislated for and practices. A 12-month prognosis is reasonable for a whole range of reasons.

[The Chair]

Thank you very much. I have three questions remaining and five minutes, so we need brevity, please.

[Kit Malthouse]

Sir Roger, can I ask about mainstream delivery?

[The Chair]

I am sorry but we have to move on.

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

Kit Malthouse Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

I remind colleagues to stay within scope of the Bill, please.

[Kit Malthouse (North West Hampshire) (Con)]

Q I want to go back to the issue of gag clause/doctor initiation. Alex, could you quickly talk to us about the thought processes? Can you say why some states introduced it and why you did not? How in legislation have you circumscribed the way doctors should approach this with patients? Perhaps our two medical guests could talk about how, in territories where there is not a gag clause, doctors are obliged not to lean towards a particular recommendation, as they might do with other courses of treatment.

Alex Greenwich: Our experience in New South Wales was based on evidence from doctors and people with the lived experience of a terminal illness. It is an extremely confronting thing to be told that you have a terminal illness, to be told that you have six months to live or to be told, if you have advanced bowel cancer, for example, that your end of life will look like you are going to be choking on your own faeces.

In New South Wales, we decided that it is important that that person, who has been told that they have a terminal illness, is able to have a full conversation with their doctor about all their options—one of those options being that they could have a better death than their illness would otherwise provide them with. We decided that being able to really talk through with your doctor all your options—from access to palliative care, to social supports, to what the process of voluntary assisted dying looks like—was so important. We believe that it is working really well in practice. We would be concerned about gagging those conversations, as that would ensure that a patient is not receiving the full information about their end-of-life choices.

[Kit Malthouse]

Q But how did you approach that in the legislation? Is it silent as to what doctors should do, or does it have a prescription?

Alex Greenwich: Yes. In our legislation we make it clear that the doctor has to make sure that the patient is aware of their palliative care options, and we have referral pathways for psychosocial support as well. All that is prescribed in the legislation. Obviously, in the training for voluntary assisted dying a lot of that stuff is covered. In the legislation, we also define the things we want to have in that training.

[Kit Malthouse]

Doctors?

Professor Blake: In Western Australia, which was the second jurisdiction to introduce voluntary assisted dying—

[The Chair]

Order. I am sorry, Meredith, but we have to move on to the next question.

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

Kit Malthouse Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q Clause 9(3)(b) would permit an assessing clinician to refer to a psychiatrist if they have concerns about the assessment of capacity. Some have suggested that in fact all patients who are seeking a voluntary assisted death should be assessed by a psychiatrist. Professor Owen, in terms of workforce capability and capacity, is it reasonably practicable to have a consultant psychiatrist assessing each and every one of these patients?

Professor Owen: I think the answer to that is “Probably not,” given the current workforce. Another relevant point is that even if you were to insert into the Bill a very clear requirement for a consultant psychiatrist to be involved if there were concerns about mental health, what would happen in practice would be very different. You can see this in Oregon, whose law has a requirement for, essentially, a psychiatric referral in the case of mental health concern. Those referrals basically occur in less than 5% of cases; I think it is similar in California. Even if you put it in law, there is the question whether it will happen in practice. On the data, it does not. I think that that is a relevant consideration.

[Kit Malthouse (North West Hampshire) (Con)]

Q Professor Hoyano, I am interested to explore your views on the third layer. I understand your view about the Court of Protection, but we have heard in previous evidence, not least from eminent members of your profession, that the Spanish model of a panel of experts might be an option worth examining. In those circumstances, what is your view of the investigatory processes, either for that or for the Court of Protection, or the type of evidence that might need to be adduced? What could be specified in the legislation as a requirement on those people involved in the process?

Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.

If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.

The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.

It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.

This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.

There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.

I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.

[Dr Simon Opher (Stroud) (Lab)]

Q My question is directed to Amanda and Laura. There is a lot of natural concern about coercion with the Bill. We recognise that it is a difficult thing to assess. Would either of you change the wording of the Bill to make coercion less likely?

Dr Ward: Which clause are we looking at?

--- Later in debate ---

[Danny Kruger]

Q This is a question for Claire Williams. It was interesting that you said you were not aware of what drugs might be used in assisted dying. We obviously do not yet know what will be proposed here if we pass this law. There are lots of different combinations of drugs used in other jurisdictions, and we do not know much about them. I think that is fair to say.

What we do know is that there is a combination. In two thirds of deaths in Belgium, I think, and in the United States, where I have visited, the first drug that is used is an anaesthetic, and then there is a paralysing agent. A paralytic drug is introduced, which often gives the impression that the patient is having a peaceful death, but we do not actually know what is going on beneath the surface. I am afraid to say that, from studies into people who have been on death row who have been legally executed, there is often evidence of brain trauma. Can you speak to this at all? We know that in a minority of cases real complications occur—it often takes a very long time for the patient to die, and there is vomiting and all sorts of distress. How can we improve what we know about the actual process of dying, and how can we reduce these terrible complications?

Claire Williams: I can only apologise, because I am here to give evidence about a model for collective decision making rather than about my experience with regard to these drugs. As you say, the potential side effects and prolonged deaths are something we will need to consider for these cases. We need to take evidence from other countries that have had this experiences. Apologies, but I cannot comment on this particular aspect.

[Kit Malthouse]

Q My question is to Dr Richards. Obviously health service medics are dealing with end-of-life situations at the moment—they are withdrawing treatment or declining to give treatment if they think it is futile. In those circumstances there are a set of safeguards. How do those safeguards compare with the safeguards in the Bill? From your research, do you think there is any adjustment required to the safeguards we have at the moment?

Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.

[Dr Tidball]

Q My question is to Dr Richards, although if Claire Williams has anything to add, it would be really helpful. We have heard evidence from overseas about the value of doctors being able to have holistic discussions about end-of-life choices under an assisted dying law. What research is there on patient experiences in those jurisdictions, in particular the evidence around quantifying the experience of dignity and respect in end-of-life choice making where assisted dying is available?

Dr Richards: Quantifying dignity or respect—

--- Later in debate ---

[The Chair]

Julie’s Zoom link is still down, so I will start with Kit Malthouse.

[Kit Malthouse]

Q Thanks very much, Mrs Harris, and welcome, everyone. Liz, you and I have met before. I am very conscious that during the last couple of days of evidence, we have heard from all sorts of people but not actually from anybody with a terminal illness or somebody who has been through the experience that you have been through—so, welcome. Over the last two or three days, we have heard quite a lot about the complexity of the issue that we are dealing with, but we also heard right at the start that we have to balance that with simplicity, access and speed. From your experience of the two methods in Australia and Switzerland, do you think that there is something to be learned from those systems about that balance?

Pat Malone: I am not familiar with the situation in Australia. The two suicides in my family were outwith the law, and the third death I was going to talk about was a natural death—we would call it a natural death—so I am sorry but I cannot make a comparison.

Liz Reed: The system in Australia is, as I said, quite similar to what is being proposed here. It felt like throughout that process for my brother, Rob, it was really caring and respectful. He was able to change his mind, which he did, in terms of dates and when it would happen. His views and the views of his family were also taken into account and, through the process, he was treated like a person with autonomy whose choices were being respected.

[The Chair]

Q Thank you. I can see that our third guest, Julie Thienpont, has appeared on screen. Welcome, Julie. Would you like to say a few words before we continue?

Julie Thienpont: I am Julie Thienpont, and my husband and I were living in Spain at the time. My husband was diagnosed with mesothelioma and given three months left to live, so he opted for assisted dying. It was quite a rigorous process in Spain. It only came into law there in 2021, and he was one of the very first people in the south of Spain to take the opportunity of assisted dying.

--- Later in debate ---

[The Chair]

Of course. Please do.

Julie Thienpont: This is hearsay, of course. I live in Guernsey now. It is a small island, so we know a lot of people. A lot of people know each other. I had something published in the Guernsey press fairly recently. A friend of mine had a relative in the local hospice, which is excellent—it is absolutely beautiful and the palliative care and the teams are second to none. However, her relative who was in there saw the newspaper and said, “Oh, my goodness! I wish this Bill would come to pass here. I wish it would have been in time for me.” He said, “I am getting excellent treatment, but I am sitting here waiting to die. My family are coming every day to watch me wait to die.” He lived for five more days and he actually expressed that even though his care was excellent, he really wanted to die sooner on his own terms.

[Kit Malthouse]

Q We have heard a lot in evidence over the last two or three days about how the doctor should approach the initial conversation and whether doctors should be allowed to initiate a conversation about assisted dying. I realise that each of you has experienced this at second hand, but could you talk a bit about how those conversations were handled? Do you have a view about the ability of doctors, if this Bill should pass, to raise assisted dying as an option for people facing this kind of decision? Liz, could you talk about the experience in Australia?

Liz Reed: Rob’s experience was that this law only came in in Queensland in January 2023, post his diagnosis. But it was an issue that had been in the press; he knew it was coming in and from diagnosis he thought it was something he might consider, and so he approached his doctor with that.

In terms of my view on whether doctors should bring this up—we are coming from a position of privilege where we have access to media; he knew this was going on, and I am sure there will be plenty of people who do not know. I do not really know, to be honest, where I sit on that. For our family and for my brother, it was absolutely the right thing to do. I cannot really answer.

Pat Malone: Some regulation and some guidance would not go amiss. My sister had fantastic support from her GP. She did a lot of extra work to meet the requirements of Dignitas, and my brother had exactly the opposite. When he went to his GP, for a long time he was told, “Oh, it’s just indigestion. Try Gaviscon.” Even when he went to his GP, in the light of his understanding of my father’s death, to say, “I think I’ve got pancreatic cancer,” his GP said, “No, it’s not—it’s just indigestion,” and so forth. It would not have mattered; an early diagnosis would have made no difference at all. But the GP was not very helpful and did not want to get involved.

When my brother died, my sister-in-law called the GP and the GP called the police. Before my brother was cold, the investigation started. If there was some way you could say to doctors, “This is what you can do, and this is what you can’t do. If you do not want to get involved, leave it to somebody who does because there are plenty of people who will”, and if that could be quantified somehow by a code of conduct—perhaps among the doctors, rather than in the Bill—that would be very useful.

[Kit Malthouse]

Q Julie, you said that you got to a point where Guy said to you that he had made his mind up. Had he made his mind up after conversations with doctors about what his options were?

Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.

[Kim Leadbeater]

Q I wonder if you have been on your own journeys around your personal views on assisted dying and choice at the end of life. I have spoken to lots and lots of people about this, and anybody who has had experiences similar to yours are very clear that the law needs to change. People who have not been as close to this issue as you have often hold a different view.

Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?

Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.

Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.

I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.

--- Later in debate ---

[Lewis Atkinson]

Q My question is for Dr Price as well, please. We heard in the week from the chief medical officer earlier, who said that he was “relieved” that this Act based capacity on the Mental Capacity Act, noting that it already provides that

“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]

and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?

Dr Price: The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.

I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.

What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.

[Kit Malthouse]

Q I also want to explore this issue of capacity a little further with Dr Price, because I share my colleague’s slight confusion.

You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.

Dr Price: You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are—all of those things.

The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.

[Rachel Hopkins]

Q Dr Mulholland, I want to push a little on where you were saying the royal college sits on the ability of members to say that they would not want to participate in assisted dying, if it came through, and on your written evidence saying that you would like to see a separate body. Given that many GPs are already very much involved in the care of their patients and will often be doing a lot of palliative care themselves, particularly around medications, and given that the Bill is about terminally ill adults with a diagnosis of six months left to live, do you mean that all GPs would stop at that six months and it would go over to an independent body, or are you saying that those GPs who want to continue that care could do so but that those who do not want to be involved in a potential route to assisted dying would step out? I would like a little clarity on that, given the person-centred care that so many GPs do so well.

Dr Mulholland: The shape of the service is not set out in the Bill. We would say that GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. This is an additional thing; this is not part of our core job. We think that a separate service—it may not just be GPs; there may be lots of different practitioners and health professionals involved —would sit better with that. You could then assess the capacity and assess those other parts that are so important and are in the Bill at the later stages.

The GP may have a role, but that would be very much up to the individual GP to decide. It would not be set out that they should be taking part. They would then probably be part of this additional service to which the others who are not taking part could signpost. We just want to make sure that there is that clear space.

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

Kit Malthouse Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[The Chair]

It is important that everybody has got their point on the record, and that they have said and raised their concerns.

[Kit Malthouse (North West Hampshire) (Con)]

Further to those points of order, Ms McVey. First of all, it is worth saying that the amendments tabled by the Bill’s promoter, the hon. Member for Spen Valley, are in response to evidence that has been heard by this Committee—oral and written. Certainly the Bill Committees that I have been on have had repeated information coming in as the Bill has evolved. That is an actual process.

It is worth also pointing out to Members that the Bill Committee is not the end of the process, and written evidence that will arrive throughout will be pertinent on Report, when the whole House will have that information available. Then members of the Committee can lead the debate and reflect on information or written evidence that has emerged even after Committee stage, once the completed Bill from that process is seen. It is perfectly possible for this to evolve as we get to Report and Third Reading in the light of evidence that arrives. That is the normal process through which all legislation goes.

[The Chair]

Thank you. I call Kim Leadbeater.

--- Later in debate ---

[Kit Malthouse]

I have to confess that I am a little confused by the evidence to which my hon. Friend refers. Can he confirm that it is perfectly possible for me to be diagnosed with a terminal disease and make an advance directive, which may apply in three months’ time, that in those circumstances I would decline treatment and would wish to die at that point? The Mental Capacity Act is used to assess me in making that advance directive, having had my terminal diagnosis. If it is good for that decision, I struggle to understand why it would not be good for a similar decision to end my life in similar circumstances.

[Dr Shastri-Hurst]

As always, my right hon. Friend makes a very good point. The Mental Capacity Act allows for advance directives on a whole variety of choices, including withdrawal of treatment, decisions on care or financial elements, and decisions on having treatment as opposed to not having treatment. It creates that ability and it is deemed robust enough for those purposes. It must therefore follow that it is robust enough for the purposes of the Bill.

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

Kit Malthouse Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

My hon. Friend makes the point powerfully. I say to everyone in this Committee—we had this discussion yesterday—that I am not opposed in principle to the concept of assisted dying, but I see my role here as to protect the vulnerable. That is what I am trying to do, and I know everyone here wants to do exactly that. I cannot really see any downside to these amendments. Why would the Committee not want them included, if we want to protect the most vulnerable? Yes, it may put a bit more onus on clinicians, because they would need to look for a lower level of coercion. But that is absolutely right—of course they should have to do that. We are talking about assisted death. It is really important that we have a higher level of consideration.

[Kit Malthouse (North West Hampshire) (Con)]

I understand that much of the difference between us on this may founder on our perception of what is actually happening. She speaks of suicide, and to some of us—certainly to me—suicide is a healthy person taking their life, but what we are talking about is somebody who is seeking to take control of their inevitable death in these circumstances. For me, those two are qualitatively different.

I am concerned about my hon. Friend the Member for Reigate injecting an element of jeopardy into what should ordinarily be normal conversations with one’s family. For example, I could see a point at which, if I were in those circumstances and was thinking about seeking assistance to end my life, I would discuss that with my wife: “Darling, am I doing the right thing? Is it the best thing for the kids? I think I’m going to have a horrible death, and I’m trying to decide.” We heard from families—and have done over the last 10 years—who, very often in anguish support their loved one, even to the extent that they are willing to break the law. As my hon. Friend the Member for Harrogate and Knaresborough said, the line between support and encouragement is quite fine. If somebody were to come forward and say, “Well, I’ve spoken to my family. They all think I am doing the right thing”, could that not be interpreted as encouragement? I am conscious that we should not try to police what should be open and natural discussions between families in a way that injects jeopardy for them and the person to the extent that they might start to modify what they say to the doctor to ensure that they get the outcome they want.

--- Later in debate ---

[Naz Shah]

My hon. Friend makes a valid point. There has already been a test case, and the Court of Appeal has ruled that undue influence is relevant to medical decisions and that doctors must look at it. If that is already a ruling, I struggle to understand the resistance to adding the words “undue influence” to a Bill that, in the promoter’s own words, should be the safest in the world. A judge has already ruled on it. We already know that we are not going to get to a judge. I struggle to understand this.

[Kit Malthouse]

As the Minister pointed out, the concepts that the hon. Lady is trying to embed in the Bill are already covered by what is a settled legal interpretation and a framework that, over the last 10 years, has become used to dealing with those issues. Do not forget that families who are going through such situations will be advised and will examine the legislation quite carefully. I am nervous about injecting yet another level of consideration for them that might mean that conversations are interpreted—by them, but not necessarily in a legal sense—in a way that is not beneficial to the patient.

I understand the group that the hon. Lady is seeking to protect—that is what we are all trying to do. But what about the majority of people in such circumstances, who might say, for example, “Darling, I am thinking about taking an assisted death because of my horrible disease. If you were me, what would you do?” If I then say, “Well, painful though it is for me, I would do exactly the same thing,” how would families interpret that?

I also want to respond to the hon. Member for Bexleyheath and Crayford. He made a strong point, but I am not sure he is exactly right. I think that if at nine months I have a disease that is progressing, and somebody in my family says to me, “When it comes to it, Kit, you have absolutely got to take an assisted death. We really want you to,” and then when I get into the six-month period I do, and I tell the doctor, my interpretation is that would be covered under the Bill.

I think what the Minister was eloquently trying to establish was that we have to be careful about the clarity of the legal language, and not make it embroidered in a way that makes interpretation by laypeople as well as by lawyers more difficult and complicated. I will come on to this in the next grouping, but we must not use language in a way that skews behaviour, or that makes what should be healthy and fulsome discussions within families guarded and nervous.

[Naz Shah]

I have to respectfully disagree with the right hon. Member that this is a settled position. I also challenge, on the record, what the Minister said. I struggle to understand how the Minister and the Government can say that this is a settled position without having gone to consultation on the Bill and without having an impact assessment. That does not satisfy me. My role when I agreed to be on the Committee was to come in to scrutinise and help strengthen the legislation. In doing so, these are the things that I am pointing out, because the safeguards are not strong enough for me.

I come back to the Court of Appeal. This would be a medical intervention, albeit to end somebody’s life. It would be administering a lethal drug to end somebody’s life, and it would be done by medics. Medics are involved in every stage. If there is case law that has already established that doctors have to look at undue influence in medical decisions, then I say to every single person on the Committee: what are we resisting? When the Court of Appeal has already said so, why is the Committee debating keeping this language out because it makes things complicated?

Let us go back to the words of Dr Jamilla Hussain, who gave evidence to the Committee. She is a clinician, and she absolutely accepts that there are some people who would really benefit from this law. As a clinician, she wants to get there. Indeed, I spoke to Professor John Wright, and he said, “Naz, absolutely—this is where we need to be.”

--- Later in debate ---

[Danny Kruger]

It is a pleasure to follow the hon. Lady. May I say how much I agree with what she has been saying and the purpose of her amendments, which I will be supporting if we get the chance, as I will the amendments in the name of my hon. Friend the Member for Reigate?

I do not want to repeat what I said yesterday, but my general point is that we make decisions in a context. We are directly influenced by the people around us. I want to highlight the very powerful phrase that my hon. Friend used. She said that love can shroud decision making, and the influence and pressure that is applied to us can be shrouded in love.

Professor House, who gave evidence to us, talked about the enmeshment of people’s decision making with the influence of their loved ones and people around them. The fact is—hon. Members have made this point—that power dynamics in families are complicated, and where there is an imbalance of power, there is risk. The Bill implicitly acknowledges that through the safeguards that it attempts to create, but I do not think they are strong enough.

I know that my right hon. Friend the Member for North West Hampshire is concerned that strengthening the Bill in this way will create an opposite risk, which is that a family member who was behaving perfectly properly could somehow be dragged into a prosecution, or that the application would be denied on the basis of a reasonable conversation that had taken place between loved ones—“My darling, do you think I should do this?” It is a lovely fictional conversation, a sweet exchange between a loving couple, but saying to somebody that you agree with the decision they have made and that you would support it, or that you are content with it or understand it, is not the same as undue influence—it is not even the same as encouragement. It is similar to the debate we will be having in due course about the role of the doctor making an overt suggestion of an assisted death, rather than consenting to a suggestion that has been made by the patient.

[Kit Malthouse]

My hon. Friend is asserting that those two things are different, but obviously, those assertions would be tested in court. If a person were to appear in front of the co-ordinating doctor and say, “Doctor, I want an assisted death and my husband thinks I should do it,” is that interpreted as encouragement? Is it support? Under the current legal framework, that would be interpretable and inquirable. However, as I said to my hon. Friend, I am not necessarily nervous that families would be dragged into some kind of legal conflict. I am concerned that they would seek to not get there at all, because the insertion of those words would make them so nervous about the conversation that they would become guarded.

We know from other jurisdictions that over time, people will come to understand this process. As I will refer to during our debate on the next grouping, they will also start to understand what they should not say, if we put into the Bill that there are things that will play negatively if they are revealed to the relevant authorities. My concern is that unless we keep the Bill simple and clear, and leave families and medics the space to have free, frank and open conversations that—from the medical point of view—cover the full range of options, we will start to restrict and police the conversation, and therefore make it that much more difficult.

[Danny Kruger]

The risk of gaming—of patients playing the game, and doctors seeking out words to say or not say—is an issue throughout the Bill. That is a general problem with the Bill; thankfully, it is not just a free-for-all. However, in the scenario that my right hon. Friend suggests, that is exactly my concern: if the patient says that their spouse agrees with them or encourages them, that should be a red flag. Under the current Bill, it is not clear that it would be. There is no obligation on the doctor to record that there has been undue influence or to push back, because at the moment, the doctor is looking only for evidence of coercion. As I will come to later, that bar is too low to use, so if the doctor hears those words, I would like him or her to start asking questions, to push back, and to satisfy himself or herself that there has been no overt encouragement or undue influence. That is the point of what we are trying to do.

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

Kit Malthouse Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Kim Leadbeater]

That brings me on very nicely to my next point, so I thank my hon. Friend for his intervention. At the moment, the Bill accommodates a two-year implementation period, which is really important because it will take time to put the procedures in place: it will take time to train people and it will take time to work holistically with the overall healthcare system. It could end up being longer than two years. If that is the case to put all the robust systems in place—to improve things, and to work holistically with palliative care and other aspects of the NHS—then that is the right thing to do, and I would be open-minded to a conversation about that.

To finish, I also note that the General Medical Council’s “Good medical practice” guide, which is the framework of professional standards, already provides that in providing clinical care a doctor

“must refer a patient to another suitably qualified practitioner when this serves their needs”.

This is what doctors do: they refer if they need extra advice; they take a holistic approach.

[Kit Malthouse (North West Hampshire) (Con)]

I just want to quickly point out that we have a check on the conversations that happen in the first stages. In clause 8, which covers the second doctor’s assessment, that second doctor must be satisfied that the individual has a “clear, settled” and, critically, “informed” wish to end their own life. So, there will be a doctor who is verifying that the person is informed properly about their options. My concern about the amendments is that, as the hon. Lady says, we are inserting now a third doctor into a system which, with regard to the panel, will already have three, four or five specialists involved in the assessment of the care.

[Kim Leadbeater]

The right hon. Gentleman is absolutely right. It feeds into comments that have already been made about how difficult we are making the process. I agree that this should be a difficult process—it should be a robust process, with thorough checks, safeguards and balances throughout—but we are in danger of forgetting the dying person at the heart of the process.

--- Later in debate ---

[Danny Kruger]

We are all being very courteous, and it is absolutely right that we should be. I have absolute respect for the good faith of every Member here, but let us not use cotton wool in these debates. I am sorry to say that I do not accept that the Committee has listened—well, it might have listened closely, but it has not accepted a single amendment, including amendment 281, which would have put into law the principle in which the hon. Member for Bradford West believes, which is that palliative care should be an option. Why was that not accepted? The Committee has decided that it will proceed with the Bill as it is.

The fact is that the Bill will give maximum autotomy, within very broad parameters, to patients, many of whom will be very vulnerable. It is an autonomy Bill masquerading as a safeguarding Bill. When we attempt to strengthen the safeguards, they are described as bureaucratic hurdles. If the Bill becomes law, I worry about what will happen to the very limited safeguards that do exist. What we see elsewhere will happen, which is that the safeguards that do exist are treated as bureaucratic hurdles. They are in fact treated, and explicitly described, as we heard from the Australian witnesses, as barriers to a human right. What were safeguards become discrimination. I am afraid that that is the road we are going down.

The point about autonomy is often made. As I say, I think that this Bill actually has autonomy at its heart. The hon. Member for Spen Valley is right to make that point. That is really what is going on here. She wants people to be able to request help to commit suicide—to end their lives. The fact is that for the most vulnerable people, creating this option, especially when we have now switched off the obligation to seek a palliative care pathway and directed people straight down the road towards an assisted death—

[Kit Malthouse]

That is a misrepresentation.

[Danny Kruger]

I am sorry if it offends Members, but the fact is that the Bill in its present form, with the amendments rejected, will place no obligation on doctors to refer people to palliative care or to seek a palliative care consultation. Many will do so, of course—many good doctors will do exactly that—but they will not be obliged to. If we are imagining that every doctor will be as brilliant as the best doctors, I am afraid that I will have to talk about the Liverpool care pathway and the many tragic scandals that we are constantly dealing with. It is simply not the case that the option of a palliative care consultation equates to the absolute expectation that it will happen.

--- Later in debate ---

[Danny Kruger]

I am grateful to the hon. Gentleman. I thought that might be the case too, and I was wondering about that, but I am very concerned about some of the evidence that Professor Whitty gave. I regret that the hon. Member for Spen Valley has removed the role of the chief medical officer from the process that she is designing by introducing the new commissioner, but I will not be sorry to see that particular chief medical officer excluded from the process. He has made significant mistakes; he had to write to the Committee to explain that he had misrepresented the Mental Capacity Act, and, on his evidence, the Committee voted to reject certain amendments.

I am concerned about what Professor Whitty said, but if the reason for including “medical condition” is to reflect the fact that there might be multiple diseases or illnesses that, together, mean that somebody is terminally ill, that is what should be stated in the Bill. It could very well include “a combination of illnesses or diseases that amount to terminal illness”. My concern is about this new concept of a medical condition, which, as I have said, implies something different from a disease or illness.

The Bill would say “the person’s death in consequence of illness or disease”—if we remove “medical condition” —so that would be the qualification or eligibility. If there is a number of illnesses or diseases that amount to a fatal prognosis, that would be captured in the clause, even once we have excluded medical condition, because the singular “illness” or “disease” would, as I understand it from our guidance on statutory interpretation, include the plural. If it is about there being a number of illnesses or diseases that add up to a fatality, the Bill as I propose to amend it would be adequate to the scenario that the hon. Member for Sunderland Central described and that Professor Whitty accounted for. The question is, what is additional illness or disease, or illnesses or diseases, that are captured by the term “medical condition”?

[Kit Malthouse]

Let me give a quick example. Amyotrophic lateral sclerosis is described as a condition rather than a disease or an illness. ALS is not dissimilar to motor neurone disease, but nevertheless people regard themselves as having a condition rather than a disease.

[Danny Kruger]

Again, I am interested in that, because I would be surprised if that condition were not adequately captured by the term “illness” or “disease”. If not, we should seek further clarification, because we need to be very specific. Illness or disease has been adequate; it is adequate in the current law on terminal illness for eligibility for benefits and pensions. I await clarification on what is added by the term “medical condition”, because my concern is that it opens the door to frailty. Going back to Chris Whitty’s evidence, I am concerned at his suggestion that frailty should be an eligible condition for an assisted death.

I will wrap up shortly so that hon. Members have time to speak to other amendments, but I will quickly refer to amendment 181 tabled by the hon. Member for Spen Valley and amendment 11 tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool), which attempt to do the same thing as my amendments. They seek to protect disabled or mentally ill people, but they do so explicitly by disapplying the provisions of the Bill for those groups, or they attempt to do so. Only amendment 11 actually does, while amendment 181 fails to do so, in my view.

Let us look at subsection (3), which attempts to protect disabled people and those with mental disorders, but which, on closer inspection, is ineffective or even meaningless. In statutory interpretation, the first phrase,

“For the avoidance of doubt.”

indicates that the subsection does not add anything to the Bill except clarity. It is intended not to change the law that is being enacted by the Bill, but to clarify the meaning of the Bill. My point is that it does not add anything—in fact, it signals that the clause can be disregarded. It is like an explanatory note and not actually relevant to the Bill. Its effect therefore negates the point that it tries to make. In including it, the hon. Lady protests too much and exposes the weakness that the clause fails to overcome. It invites a court to disregard the protection it pretends to offer by stating that that protection has no force except what is elsewhere in the Bill.

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

Kit Malthouse Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Stephen Kinnock]

My understanding is that amendment 181 is clear that the qualification for accessing assisted dying has to be based on the definitions in the main body of the Bill. If passed by the Committee, the amendment will make it clear that an eating disorder does not qualify for access to that service. There has to be another, clear definition that does qualify under the terms set out in the main body of the Bill.

[Kit Malthouse (North West Hampshire) (Con)]

I just want to illustrate to the Committee that people with eating disorders, certainly as they come towards the end of their life, are already subject to quite assertive action by the state. For example, over the past few years, generally, where hospitals have detected that an individual is effectively trying to starve themselves to death, they have applied to the Court of Protection and got orders for forcible treatment. In that application, it is determined that that person does not have the mental capacity to make decisions about their own medical care.

I do not want the Committee to labour under the illusion that people with anorexia or other eating disorders are going to wander up and suddenly ask for an assisted death. If there has been a detection that they are trying to get themselves eligible by effectively causing organ failure by starvation, the system would have intervened well before then, effectively to force them to be treated.

--- Later in debate ---

[Naz Shah]

First, this is not an issue for a tribunal, where it would be on the balance of probabilities; it is not an issue for a court of law or a criminal court, where we would be using proof beyond reasonable doubt. What I am trying to demonstrate is that doctors, in those diagnoses where they do get it right, have much more certainty. It might be that people have six months to live because they have different types of cancer. I am certainly not a clinician or an oncologist, but I know from the evidence we have had and from speaking to people that some people’s diseases—the specialists know better—have a trajectory of plateauing out and then dropping right at the end and some have a jagged kind of decline. Some of those diseases can be predicted with much more clarity than others. On the surface of it, in September, it might be the case for somebody that that is within the time—as for one lady who was told that she would not have more than six months to live. She is the founder of the Music of Black Origin awards and I was with her last week. She was absolutely fighting; she was not supposed to make it to that day. It is for the medics to decide—it is not for me to decide—but I would like medics to have much more certainty than they currently do, so that we would not have 47% of cases being misdiagnosed. That is what I am trying to get to, but I thank my hon. Friend for his intervention.

I argue that there is still a danger of using the standard prognosis that is currently in the Bill. The current research into doctors’ prognoses indicates that about half of their estimates are incorrect. My amendment would hold doctors to a higher standard of certainty. Under the measure, they would be explicitly held to a prognosis that death would occur with reasonable certainty within six months, and that that would have to be true even if the patient underwent all recommended treatment.

To go back to my hon. Friend’s intervention, this amendment is about raising the bar for how our medics make decisions. I submit that it would be a stronger test than the one currently included in the Bill. My hon. Friend the Member for Spen Valley has frequently stated that she wishes to create a Bill with the toughest safeguards in the world. I keep coming back to that, because the whole purpose of speaking to all these amendments is to put in opportunities to try to strengthen the Bill. By their nature, all these amendments reflect hon. Members’ concerns. This amendment would tighten the prognostic standard required of doctors and would therefore contribute towards tightening the Bill’s safeguards. I hope that hon. Members support it.

Finally, I turn to amendment 402. I will repeat a lot about anorexia, but it is an important amendment. I have tabled it for a simple but extremely important purpose: to prevent people from qualifying for assisted dying by stopping eating and drinking to the degree that they develop severe malnutrition, such that a doctor would give them a prognosis of six months to live. It specifically aims to protect people with severe eating disorders, including anorexia nervosa, and would also protect people with a severe wish, as one of the psychiatrists who testified before the Committee put it, to “hasten death”. I hope that my hon. Friend the Member for Spen Valley, and all other Committee members, will support this amendment.

Let us make no mistake: the Bill, as currently drafted, has a horrible loophole that all of us should seek to close. We know that anorexia sufferers and other people with eating disorders can and do stop eating to the point where they are dying of malnutrition. We should not allow such people to qualify for assisted death. Unfortunately, that is not a hypothetical danger; it is happening.

We know from the evidence that the Committee has received that that has happened in other countries. A group of eight experts on eating disorders submitted written evidence TIAB54 to the Committee some weeks ago. The experts included Chelsea Roff, who has been referred to many times in this Committee, and who gave clear testimony before the Committee, as well as seven medical doctors from hospitals in the UK, the US and Canada.

I hope that all Committee members have read the evidence, but I would understand if they had not, because we have had nearly 400 pieces of evidence to go through and very little time to read it. It seems to me, however, that if we are trying to write the best possible Bill, with the strongest possible safeguards, we have to pay the written evidence of experts the attention that it deserves. In their written evidence, that group of experts said:

“Patients with severe eating disorders frequently experience profound psychological distress and may express a desire to die. While this may appear to reflect a clear and informed wish, it is often a symptom of their psychiatric condition, which is remediable with appropriate treatment.”

The experts found that at least 60 patients with eating disorders received assisted death in several jurisdictions worldwide, including the US, Canada, the Netherlands and Belgium. I stress the phrase “at least 60” because we cannot be entirely sure that that is the full total. It is sadly the case that some jurisdictions are much more painstaking and transparent in the data they publish on assisted death than others.

In itself, it is tragic that people died in that way, but two things surely make the fact even worse. There are certainly men with eating disorders, but this is a problem that disproportionately affects women and girls. We know that the incidence of anorexia nervosa is much higher among women than among men in every age group. That is tragic. In every case we know of where a person with an eating disorder received an assisted death, that person has been a woman. I say it again: we cannot allow the Bill, as currently written, to stand. The Labour Government was elected with a mandate to reduce violence against women and girls. We surely cannot pursue that goal while at the same time increasing the vulnerability of women and girls who have eating disorders. There is nothing in the Bill as it currently stands that would stop doctors signing off on assisted death for someone who had starved themselves into malnutrition.

The courts in England and Wales have already begun accepting that some people with anorexia have reached a terminal stage. In the Court of Protection case, The NHS Trust v. L & Others, which took place in 2012, a 29-year-old with severe anorexia was described in the ruling as follows:

“The prospects of her recovery overall approach zero…given that it is extremely unlikely that Ms L will recover from her anorexia…in best interests to move to palliative care if L…in terminal stage of her illness.”

The right hon. Member for North West Hampshire raised the Court of Protection. There are 10 cases where the Court of Protection has made rulings. Of them, only one case, in 2012, ruled that the young lady could be force-fed.

[Kit Malthouse]

It is the other way around.

[The Chair]

Order.

[Naz Shah]

Thank you, Mr Dowd. I have it in evidence and I am happy to provide the reference.

[Kit Malthouse]

My understanding is that it is the other way around. In all but one case, force-feeding was decided by the courts. In the case the hon. Lady is referring to, L, the court did wrestle over that particular issue and realised that, such was the advanced stage of the patient’s condition and the complexities of force-feeding, it could not quite bring itself to authorise it. My understanding is that in all bar one case force-feeding has been authorised.

[Naz Shah]

Actually, it was the other way around and I am happy to provide a reference to the right hon. Gentleman. Nine cases found lack of capacity, but still not in the best interest. One of the girls was 19 years old. The judge found that they lacked capacity to make decisions about their treatment. The question of whether they had the capacity to decide to end their life is completely different and not something we have asked judges to rule on before. The judge’s ruling clearly implied the capacity to refuse force-feeding even if it resulted in their death. I am happy to provide the references for that. It was against their best interest to force-feed them. Tragically, in nine of the 10 cases the judges accepted that that would inevitably lead to the deaths of those young girls.

My hon. Friend the Member for Spen Valley has repeatedly stressed that her Bill is modelled on the Death with Dignity law in Oregon.

--- Later in debate ---

[Naz Shah]

I thank my hon. Friend for his intervention, but the truth of the matter is we have 10 cases that have gone to the Court of Protection. In nine of those 10 cases, judges ruled that the young people—women and girls, one was only 19—did have the capacity not to take treatment.

[Kit Malthouse]

Just to clarify, what I said earlier was slightly incorrect—I misread my briefing. While the hon. Lady may be right that the court decided not to proceed with force-feeding, a number of those applications were by the individual to stop the force-feeding. While the court decided that, on balance, that was the right thing to do, in all those cases since 2012 the individual was not found to have capacity to make decisions about their own condition; the decision was made by the court for them. That means that, under the terms of the Bill, they would not qualify. Some of those cases were quite complicated. A number of them, as I read it—

[The Chair]

Order.

[Kit Malthouse]

Forgive me, Mr Dowd—I was trying to be pithy.

[The Chair]

To some extent, there is an issue here of repetition. Standing Order No. 42 gives me the power to stop potential repetition. I do not want to use it—I do not want to interfere with the debate—but I am afraid we are getting to the point of repetition. If I need to invoke Standing Order No. 42, I will.

[Naz Shah]

I thank the right hon. Member for his intervention, but my understanding is that the judge found that those individuals lacked capacity to make decisions about their treatment; whether they had the capacity to decide to end their life is a completely different test. I apologise in advance for repeating this, but it is not something that we have tested. They had the capacity to refuse. The judge ruled that they could not be force-fed. Tragically, in nine cases, while not force-feeding those young women would lead to their death, the judge insisted that force-feeding would not be in their best interests. That is what happened in those cases.

[Kit Malthouse]

I stand to be corrected, but my understanding is that in the seminal case that the hon. Lady is talking about, the case of The NHS Trust vs. L, the court decided not to force-feed L because the prognosis was that force-feeding would precipitate her death.

[Naz Shah]

I thank the right hon. Member for his intervention. I have talked about that case, and the court concluded:

“The prospects of her recovery overall approach zero… Given that it is extremely unlikely that Ms L will recover from her anorexia it is…in her best interests to”

move to palliative care, as it was considered a terminal illness. In some ways, that makes my point for me: she was diagnosed as terminally ill. The purpose of the amendment is to close that loophole. The majority of these cases are young girls and young women. I do not want them to get to a stage where they qualify under the Bill because they have a terminal illness due to refusing food, because that can be treated. That is the point that I am trying to make.

Let us say that only one or two people with anorexia have an assisted death if the Bill becomes law without my amendment. I hope that every member of the Committee would agree that even one such death would be unacceptable. Some might say, “Oh, but we must not make the perfect the enemy of the good.” That has been said in the debate, or sentiments have been expressed that reflect that sentence.

That is a good argument to make when we are trying to persuade our teenagers to finish their homework for school and so on. It does not wash for me when we are trying to create a Bill with the strongest possible safeguards for vulnerable adults, and it is too close to the arguments made in favour of brutal actions across the globe. We say things like, “To make an omelette, you’ve got to crack a few eggs.” If we want to make the Bill the best it can be, we cannot use such arguments. Perfection is not the enemy of the good—perfection is absolutely what we should be pursuing in this Committee.

Reference was made to one of the witnesses who gave oral evidence. I remember being aghast at the idea that these two people who died in Oregon were somehow a red herring and that there had been only two. It was really disappointing, and I was extremely angry at that comment. That is not something we should be doing or the standard we should be setting. We cannot be saying that.

There is nothing good about letting people who have sadly reached an advanced state of malnutrition be given assisted dying. Surely we can agree on that. If this Bill does not include my safeguard, it will do two things. First, it will increase the dangers of anorexia. People already develop anorexia to such a degree that they perish of malnutrition. Allowing such people to apply for assisted dying will mean that more severe anorexics die. If we do not adopt my safeguard, we run the further risk that those who are not anorexic, but wish to hasten death, stop eating in order to qualify for an assisted death. Both of those would be truly malign. I would hope all Members of the Committee will accept my amendment to protect those who would otherwise be at risk of starving themselves to an assisted death.

I also want to bring to the Committee’s attention a public letter that has been released this afternoon by nearly 40 individuals who work in the field of eating disorders. They have said, on the amendment to which I am speaking:

“This amendment states that mental illness alone does not qualify as a terminal illness, but as the legal text (“Nothing in this subsection…”) makes clear it has no effect beyond restating that the condition must meet the requirements of clause 2(1). If a doctor holds that a mental illness meets the test in clause 2(1) for terminal illness, this amendment will do nothing to prevent that.”

They further say:

“Eating disorders are treatable. They are life-threatening when left untreated or poorly treated, but this risk is preventable, and deaths from eating disorders are not inevitable. As campaigners, clinicians, charities, and organisations working with those affected, we urge the committee to take these concerns seriously and ensure this bill does not put people with eating disorders at risk of premature death under the guise of assisted dying.”

On my amendment 402, they say:

“Amendment 402: Explicitly states that a person cannot be deemed terminally ill because they have stopped eating or drinking.”

On amendment 48, they say:

“Amendment 48: Clarifies that a person is only considered terminally ill if their death is reasonably certain within six months, even with all recommended treatment.”

They are supporting those amendments, 9, 10, 48, 402 and 11. On that note, I will finish.

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

Kit Malthouse Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Danny Kruger]

It is unlikely that I would ever vote for an assisted dying law but, if we are going to have one, I want to make it as safe as possible, which we all want. On those terms, in the spirit of a Bill that is going to pass, why not include these specific pieces of information? The hon. Lady says that, while it would not make the Bill more dangerous, it would overcomplicate it. Again, how does it overcomplicate it to add a few clauses specifying information that must be clearly communicated?

[Kit Malthouse (North West Hampshire) (Con)]

Amendment 50 requires that whoever is medically assessing capacity is also able to understand the legal implications. The final point of the amendment says that they have to understand what the insurance implications are likely to be, which would mean that they would have to inquire into the individual’s financial circumstances. They possibly might need to understand what provision they have made for their family.

It also references what the designation of death is likely to be, which again requires them to decide there and then what they will write on the death certificate, when it happens. As the hon. Member for Stroud said, much of what is in amendment 50 is already either in the Bill or implied by it. As Ministers have said before, we have a duty to the statute book not to embroider it to the extent that it becomes overcomplicated and unworkable. I do not think that any of us would necessarily argue with the points in amendment 50, other than perhaps the last one about legal expertise, but clarity leads to certainty, which leads to safety.

[Danny Kruger]

By that logic, the safest, clearest Bill would be one that simply authorised an assisted death without any of these checks whatsoever. My right hon. Friend made the point that this amendment requires the doctor to discuss with a patient all the implications of their death. That is perfectly appropriate—in fact, if that is not being done at some stage in the process, and if that is not clear in the Bill, it absolutely should be. Otherwise, how can we be sure that the person is making a settled, informed decision, with all considerations taken on board?

I am sorry if that imposes a little extra burden on the doctor. One of the great challenges of the Bill is that, if we are to do it properly and genuinely make it a Bill that is strong in its safeguards, a whole lot of people will have to do a whole lot of work. There will be a huge demand on all parts of the public sector. This is required, I am afraid. I do not accept that the content of the amendment is either already in the Bill or implied in it. There might be some remote piece of GMC guidance that touches on this, which we would hope is properly applied, and I appreciate the point about embroidery. Nevertheless, this is not embroidery; this is upholstery—it is necessary for the Bill to be strong.