All 8 contributions to the Terminally Ill Adults (End of Life) Bill 2024-26 (Ministerial Extracts Only)

Read Full Bill Debate Texts

Tue 28th Jan 2025
Terminally Ill Adults (End of Life) Bill (Second sitting)
Public Bill Committees

Committee stage: 2nd sitting & Committee stage: 2nd sitting
Thu 30th Jan 2025
Terminally Ill Adults (End of Life) Bill (Sixth sitting)
Public Bill Committees

Committee stage: 6th sitting & Committee stage & Committee stage

Terminally Ill Adults (End of Life) Bill

(Limited Text - Ministerial Extracts only)

Read Full debate
2nd reading
Friday 29th November 2024

(2 months, 1 week ago)

Commons Chamber
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Watch Debate

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Andrew Mitchell Portrait Mr Andrew Mitchell (Sutton Coldfield) (Con)
- View Speech - Hansard - - - Excerpts

I want to make three brief points. First, I have completely changed by mind on this subject since I entered the House during the last century, because I have sat in my advice surgery with tears pouring down my face listening to constituents who have set out so clearly, speaking with such emotion, about how their mother, brother, father or child had died in great pain and great indignity.

I strongly support the Bill, and I congratulate the hon. Member for Spen Valley (Kim Leadbeater) on the excellent way in which she has presented it. I believe that we should give our constituents—our fellow citizens—this choice. I want this choice for my constituents; I want it for those whom I love; and I want it, perhaps one day, for myself.

Scott Arthur Portrait Dr Scott Arthur (Edinburgh South West) (Lab)
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Will the right hon. Gentleman give way?

Andrew Mitchell Portrait Mr Mitchell
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I will not, I am afraid. The current law forces people to plan their deaths in secret. Their bodies are found by their loved ones. Often, they die in the most horrific circumstances. They have no chance to say goodbye to their loved ones. It is devastating for their families. The former Health Secretary commissioned the Office for National Statistics to try to find out how many people who committed suicide every year were dying people. The figure was between 300 and 650.

Secondly, in our democracy, the Commons must make this decision. Only we, elected by our constituents, have the legitimacy to do this. It is not the DPP, the Crown Prosecution Service, the police, doctors or even unelected Members of the House of Lords—this House of Commons must make this decision. Let us be clear that all of us on both sides of the debate strongly support an increase in the quality and extent of palliative care. For me, the debate is about extending choice, in very narrow and heavily regulated circumstances under the Bill, as the hon. Lady so clearly set out—the choice not to be forced to end your life in pain and indignity. No element in the Bill talks about intolerable suffering. Many believe that the Bill is too narrowly drawn. I stand by the hon. Lady’s drafting. We should remember that in Oregon there has been no serious attempt to change or amend the law.

I had the privilege of speaking to an NHS consultant last year, the day before she headed to Dignitas. She said, “I love my country, but I object very strongly to my country forcing me to make this choice, and to having to travel unaccompanied to a foreign country to die.” The status quo is cruel and dangerous. People caught up in these circumstances have no transparency; there is no regulation, safeguards or oversight. The Bill contains a whole series of safeguards that are not present at the moment.

Thirdly, we are deciding today on a principle. If the Bill is voted down on Second Reading, that will be the end of the matter for many years, and we will do that in the knowledge that Scotland, the Isle of Man, Jersey and many other countries are likely to bring in legislation like this. There are 300 million people in 30 jurisdictions who have secured this ability to choose. There will be numerous safeguards. There will not be a slippery slope unless this Parliament agrees to there being one. If we agree to a Second Reading today it is, in my judgment, inconceivable that the Government Front Bench will not ensure we have the proper time to scrutinise the Bill.

This Bill goes with the grain of our constituents’ views—about 75%, according to the most recent polling. There is an opportunity and a chance, as the hon. Member for Spen Valley has set out, to consider in detail these matters ahead of Third Reading. As drafted, the Bill seems to me a very modest and controlled proposal. Let us not forget this: Oregon shows us that fewer people take these steps once they know they have this choice as a back-up.

I end with something I have never forgotten. Some years ago, I was listening in a debate to a young man who had recently lost his father. He had visited his father and seen him in great pain and indignity. He had seen him three days before he died. In the end his father put a bag over his head and used his dressing-gown cord to hang himself. That young man said to all of us: “If you are ever in this position, let’s hope that God will help you, because they certainly won’t.” Today, this House has the opportunity to ensure that they will.

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Kit Malthouse Portrait Kit Malthouse (North West Hampshire) (Con)
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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 Portrait Sam Rushworth (Bishop Auckland) (Lab)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
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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.

Kit Malthouse Portrait Kit Malthouse
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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.

James Cleverly Portrait Mr James Cleverly (Braintree) (Con)
- Hansard - - - Excerpts

Will my right hon. Friend give way?

Kit Malthouse Portrait Kit Malthouse
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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.

None Portrait Several hon. Members rose—
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Alex Davies-Jones Portrait The Parliamentary Under-Secretary of State for Justice (Alex Davies-Jones)
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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 Portrait Kit Malthouse
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claimed to move the closure (Standing Order No. 36).

Question agreed to.

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

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14:08

Division 51

Ayes: 330


Labour: 235
Liberal Democrat: 61
Conservative: 23
Green Party: 4
Reform UK: 3
Plaid Cymru: 3
Social Democratic & Labour Party: 1
Independent: 1

Noes: 275


Labour: 147
Conservative: 92
Independent: 14
Liberal Democrat: 11
Democratic Unionist Party: 5
Reform UK: 2
Traditional Unionist Voice: 1
Plaid Cymru: 1
Alliance: 1
Ulster Unionist Party: 1

Bill read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).

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

(Limited Text - Ministerial Extracts only)

Read Full debate
Committee stage
Tuesday 21st January 2025

(2 weeks, 4 days ago)

Public Bill Committees
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 21 January 2025 - (21 Jan 2025)

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Kit Malthouse Portrait Kit Malthouse (North West Hampshire) (Con)
- Hansard - - - Excerpts

But we will be coming back to public—

None Portrait The Chair
- Hansard -

Order.

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Kit Malthouse Portrait Kit Malthouse
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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 Portrait Naz Shah (Bradford West) (Lab)
- Hansard - - - Excerpts

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.

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None Portrait The Chair
- Hansard -

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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—

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Danny Kruger
- Hansard - - - Excerpts

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.

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Division 1

Ayes: 8

Noes: 14

Manuscript amendment proposed: (c), after

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

(Limited Text - Ministerial Extracts only)

Read Full debate
Money resolution
Wednesday 22nd January 2025

(2 weeks, 3 days ago)

Commons Chamber
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Watch Debate Amendment Paper: Notices of Amendments as at 22 January 2025 - (22 Jan 2025)

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Stephen Kinnock Portrait The Minister for Care (Stephen Kinnock)
- View Speech - Hansard - - - Excerpts

I beg to move,

That, for the purposes of any Act resulting from the Terminally Ill Adults (End of Life) Bill, it is expedient to authorise the payment out of money provided by Parliament of:

(1) any expenditure incurred under or by virtue of the Act by the Secretary of State, and

(2) any increase attributable to the Act in the sums payable under or by virtue of any other Act out of money so provided.

The Government are of the view that the Bill is a matter for Parliament rather than the Government to decide. In order for the Public Bill Committee that is now scrutinising the Bill to consider the clause that would have spending implications, the Government must first table this money resolution. This is purely to allow the Bill to be debated in Committee, and the Government have taken the view that tabling this motion does not act against our commitment to remain neutral. Only the Government can table such motions, so tabling it allows further debate to happen. To assist that debate, the Government will also assess the impacts of the Bill, and we expect to publish the impact assessment before MPs consider the Bill on Report.

Nusrat Ghani Portrait Madam Deputy Speaker (Ms Nusrat Ghani)
- Hansard - - - Excerpts

I call the shadow Minister, Dr Kieran Mullan.

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Kit Malthouse Portrait Kit Malthouse (North West Hampshire) (Con)
- View Speech - Hansard - - - Excerpts

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.

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Stephen Kinnock Portrait The Minister for Care (Stephen Kinnock)
- View Speech - Hansard - - - Excerpts

I thank Members for their continued contribution to the debate. The Government are of the view that the Bill is an issue of conscience for individual parliamentarians and it is rightly a matter for Parliament, not the Government, to decide. The money resolution allows the Bill to be debated in Committee, where its detail will continue to be scrutinised. As I have said, the Government will also be assessing the impact of the Bill and we expect to publish an impact assessment before MPs consider the Bill on Report. I therefore commend the money resolution to the House.

Question put and agreed to.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- View Speech - Hansard - - - Excerpts

On a point of order, Madam Deputy Speaker. The right hon. Member for North West Hampshire (Kit Malthouse) made a comment that I feel impinged upon my integrity. I have spoken to the right hon. Gentleman and he knows what I am referring to. I underlined and highlighted that the Terminally Ill Adults (End of Life) Bill Committee went into private session; some 15 Members, who support the Bill, voted for the private session and nine Members, who oppose the Bill, voted against the private session. The record must be corrected about what the right hon. Gentleman said about the comments I made about that. Facts are facts; they matter to me, as does my integrity.

Nusrat Ghani Portrait Madam Deputy Speaker (Ms Nusrat Ghani)
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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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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.

Nusrat Ghani Portrait Madam Deputy Speaker
- Hansard - - - Excerpts

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)

(Limited Text - Ministerial Extracts only)

Read Full debate
Committee stage
Tuesday 28th January 2025

(1 week, 4 days ago)

Public Bill Committees
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 28 January 2025 - (28 Jan 2025)

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Sean Woodcock Portrait Sean Woodcock (Banbury) (Lab)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse (North West Hampshire) (Con)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Danny Kruger (East Wiltshire) (Con)
- Hansard - - - Excerpts

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.

--- Later in debate ---
None Portrait The Chair
- Hansard -

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

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

Right, so professional judgment again—

None Portrait The Chair
- Hansard -

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

Dr Green: That was my complete sentence.

--- Later in debate ---
Sojan Joseph Portrait Sojan Joseph
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Danny Kruger
- Hansard - - - Excerpts

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)

(Limited Text - Ministerial Extracts only)

Read Full debate
Committee stage
Tuesday 28th January 2025

(1 week, 4 days ago)

Public Bill Committees
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 28 January 2025 - (28 Jan 2025)

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Danny Kruger Portrait Danny Kruger (East Wiltshire) (Con)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse (North West Hampshire) (Con)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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.

None Portrait The Chair
- Hansard -

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 ---
Liz Saville Roberts Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
- Hansard - - - Excerpts

Q I have a question for Alex Ruck Keene. I noticed the concerns in your evidence about presumption of capacity, and I know that you have written in the past about concerns over different disciplines having different definitions of capacity. Later on in your evidence, you also mention multidisciplinary consideration of circumstances in assessing eligibility. How might that multidisciplinary eligibility assessment alleviate some of your concerns in relation to capacity decisions?

Alex Ruck Keene: We have capacity, but we also have to make sure that it is settled, informed and voluntary, and that we do not have things like pressure or influence going on. It is important to make it clear that we are not just saying that this is about all the weight going on capacity. For instance, if you have social workers involved—if you have, say, palliative care social workers involved, assuming it is a palliative care situation—they are going to be far better informed about what options might be out there than a doctor, potentially, depending on the doctor. Social workers more generally might well have more expertise in picking up signs of coercion or influence than a doctor, but I do not necessarily want to get into, “Some disciplines are good at X” and “Some disciplines are good at Y”—I have come across brilliant examples and bad examples in both zones.

It is partly about multidisciplinariness and also about the fact that you have more than one person trying to talk it through. When I train, I always try to tell people that 85% of capacity assessments are not all that difficult —they are just made difficult because you do not have time or you are not listening—but 15% are more difficult. I think a lot of these will be in the 15% zone, and in that zone, the more people you can have thinking about it, so long as they have an agreed framework within which to think, the more reliable, transparent and accountable the outcome is going to be.

Sarah Sackman Portrait The Minister of State, Ministry of Justice (Sarah Sackman)
- Hansard - - - Excerpts

Q I want to pick up on your evidence, Sir Nicholas, in relation to the panel that we have just been discussing with Sir Max. I have three questions. First, what do you envisage the panel doing under your model? Will it be ensuring that a lawful process has been followed or doing something more than that?

Sir Nicholas Mostyn: The former.

Sarah Sackman Portrait Sarah Sackman
- Hansard - - - Excerpts

Q That is helpful. Secondly, what information do you think the panel will need in order to reach a determination on that question?

Sir Nicholas Mostyn: It will have the statements in schedules 1 to 4, signed by both doctors twice. This is where it gets slightly tricky. Is the panel expected to be a ferret and say, “This does not quite chime for me”? The Committee will have to consider how investigative the panel will be, or whether it will purely sit back, be passive and work on the material it has. Of course, under clause 12, it has to hear orally. That might get the alarm bells going, but I believe that the panel should be entitled to call for further evidence if it has concerns. As I say, I have been trying to find out why 10% of cases were rejected by the panel in Spain. There must have been some kind of procurement of further evidence by the panel in order to do that.

Sarah Sackman Portrait Sarah Sackman
- Hansard - - - Excerpts

Q I suppose my third question, then, is how do you envisage such a panel, if at all, interacting with the High Court—with, say, a final right of appeal to the High Court, similar to what is in the Bill?

Sir Nicholas Mostyn: Article 10 of the Spanish law gives an appeal on a point of law to their high court, so I would have the same, with an appeal on a point of law to the High Court, but only on a point of law.

Alex Ruck Keene: Either way—it would have to be either way. It could not just be against a decision not to approve, logically, because the current model is very odd in saying that you can only appeal one way to the High Court.

Sir Nicholas Mostyn: Yes. Spain gives either side the right to appeal, so I agree with that, but it is confined to a point of law.

Sir Max Hill: I would only add that I wonder whether that is the only route through, namely leaving open a judicial review appellate process, or whether, for example, as we imagine with a number of commissioner-led processes already in this jurisdiction, the panel—or frankly, I suspect, panels, which might sit regionally, chaired perhaps by the retired judiciary—would have an appellate route to a national body, which you could call a national commission, instead of a judicial-review route to the Court.

There are a large number of commissioners, some sitting under the Home Office and some sitting under the Ministry of Justice—in a sense, I was a commissioner when I was the independent reviewer of terrorism legislation—with closely defined powers. There are many others who sit in an enhanced regulatory position—highly qualified individuals. You could describe them as national commissioners, if that is an appropriate term, and they would have superintendence over regional panels, and the power to appoint retired judiciary, perhaps with the assistance of the Official Solicitor, to sit on those regional panels, and then to have an internal appellate mechanism.

Sir Nicholas Mostyn: You have to have an appeals process of some type, because otherwise there will be judicial review. If there is no appeal, there is judicial review—so you have to have an appeal of some type or there will be judicial review.

Sir Max Hill: Yes, I agree.

None Portrait The Chair
- Hansard -

We have some Members who want to ask more questions; we have about six minutes or so. Jake Richards, you did have a possible question earlier on.

--- Later in debate ---
Jack Abbott Portrait Jack Abbott
- Hansard - - - Excerpts

Q I will keep my question quite short. Is there anything about the law in either of your jurisdictions where you think there could be improvement, and that we can learn from in drafting our legislation here?

Dr Kaan: The thing I have been reading about that is concerning to me is the court approval that you seem to have written into your law. I heard your discussion this morning about how that might be done and whether it is a committee or the High Court and so on. I think that that is really going to limit access to this, and that makes the process a much lengthier one.

Again, these are people at the end of their life. People are not looking, by and large, to cut off a huge amount of their life; they are looking to shorten their death, not shorten their life. By making people go through a court appeal in addition to two qualified physicians, as well as the waiting period, I think that you are going to limit access for people who desperately want this option. It seems like that might be baked into your law, but I would say that that is a concerning feature to me. I think that you are going to limit access that way.

Dr Spielvogel: Something that it turned out was not in our law, but everyone thought that it was for a few years, and it really limited our practice, was that many people were under the impression that the physician could not bring up assisted dying with the patients, and that the patients had to bring it up themselves. That turned out not to be in our law, but that idea really hampered our ability to take care of patients, so I would strongly recommend that there not be anything like that in your Bill. People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors—we all know that this exists—even if this Bill becomes law, the general population is still not going to realise that it is an option.

I eat, sleep and breathe this. I am a primary care physician, and when I am going through the options with patients who are newly diagnosed with a serious life-threatening illness, I say, “Okay, here’s what disease-directed treatment would look like. We can continue with your chemo. Here are some side effects and complications that you might have, and here are the benefits of that. Here’s what palliative care or hospice care would look like.” Then I say, “I don’t know if you know this, but in our state we have this other option for people nearing the end of their lives when they have intolerable suffering. You can ask me to fill a lethal prescription for you to help end your suffering sooner.”

The number of times that people look at me and say, “You can do that? That’s an option here?” is astounding. I would say that nine out of 10 of patients I have conversations with have no idea that that is even legal. If they do not know it is an option, they are never going to ask for it. For physicians to do their jobs properly and deliver care to people, and for people to actually have a choice, physicians need to be able to discuss it with their patients.

Dr Kaan: I will just piggyback on that. I cannot count the number of times I have given a presentation or a talk to communities, and people—usually family members of someone who have died, not using this law—have come up to me afterwards and said, “Thank you for what you said. My loved one was interested in having this information, or wanted to talk to their doctor about it, but their doctor never brought it up, so we weren’t sure if we should be bringing it up.” It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much and, as Dr Spielvogel said, you cannot have an informed decision-making discussion with a patient if they do not have all the options available for discussion.

Stephen Kinnock Portrait The Minister for Care (Stephen Kinnock)
- Hansard - - - Excerpts

Q I want to drill down a bit more on the question of training. Could you say a bit more about how the training works? Is it mandatory for everyone who takes a medical qualification to a certain standard? How many class hours are required? Is there an in-practice shadowing process? Is there an assessment process to verify that the person is qualified as a result of the training? I am just trying to get a better sense of the detail of the training. I will perhaps start with Dr Kaan.

Dr Kaan: That is a really important question, because this is a really important topic in the United States. Our laws are very clear that participation is voluntary, so there is no such mandatory training across medical training in general. It is always voluntary. If a physician or provider wishes to have training, they can seek it out. What is available and the standard of care differ from state to state. Certainly, in the state of Washington, where I am the medical director of the organisation that is most largely involved with this, the bulk of my job is doing training, mentoring and shadowing. There is no exam at the end of that process, but there is certainly shadowing and a feedback process.

I am also heavily involved with the Academy of Aid-in-Dying Medicine, which has been very active in creating professional training. We have a Journal of Aid-in-Dying Medicine, which is a peer-reviewed journal that puts out articles that are relevant to the topic. The Academy of Aid-in-Dying Medicine is now undertaking certification pathways, so each level of provider—social workers, chaplains, physicians and anyone else who might be involved in the aid-in-dying process—will be able to take these certifications. A more uniform education system will be available. We are just at the beginning of creating those, but it is very exciting, and we are very happy to have those out. A lot of resources are out there in the world already, in general, to train providers in how to do this well, and it would be really smart to have something in your Bill that outlines what the training should be, whether you will make it mandatory or voluntary and perhaps some sort of certification pathway.

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

Dr Spielvogel, I do not know whether you have anything new to add to that. If not, that is fine.

Dr Spielvogel: Without repeating anything that Dr Kaan said, I was just going to say that in addition to my assisted dying hat, I am also the programme director for the family medicine residency programme, so my main job is actually training young physicians who are becoming what you would call GPs.

We have instituted curricula as part of our residency programme here to train interested physicians in learning how to do assisted dying. We go through a whole process for that, including lectures, them shadowing me and me shadowing them, listening in on their conversations, giving them pointers and walking them through the steps of the process. They then do this with multiple patients through the course of their residency, so when they graduate, they feel confident in being able to offer this care. As with most medical training, this should be included in that part of the training process. All the other things, such as pathways in continuing medical education, are very important for physicians out there in practice who want to start doing this, but really getting this into medical training at its roots is vital for normalising the practice.

Speaking of which, something else I have heard a lot is that this might be distressing to physicians, or that physicians would not want to offer this care. I would like to say that 80% of our residents on our programme opt to receive this training. When we did a study on this of graduates from our programme who were continuing to offer assisted dying, 70% of the surveyed residents said that their assisted dying work was more rewarding to them than the rest of their primary care work—70% said that it was more rewarding.

I want to come back to the notion that physicians would feel burdened or that this would be some sort of psychological negative to physicians practising it, because it is actually quite rewarding work. It has led me to be a better physician to all my patients because it has helped me with having these difficult end-of-life conversations with them. That was a bit of a twofer, sorry—I added that on there.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

Q I have four very quick questions. I would be grateful if you could try to answer them quickly, because we have to let everybody else in before the end of the session. Dr Spielvogel, I was struck by you saying that nine out of 10 patients to whom you have suggested this option were not aware of it. How many people who did not know about it before and to whom you might have suggested assisted dying as an option do you think have taken it up? How many people do you think benefited from you telling them about the option?

Dr Spielvogel: A lot. I have actually been quite surprised. Everybody is different. This is the whole point: different people have different goals, objectives and values. I have mentioned it to people who say, “No, I would never do that,” and I never bring it up to them again.

--- Later in debate ---
Marie Tidball Portrait Dr Tidball
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Lewis Atkinson
- Hansard - - - Excerpts

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)

(Limited Text - Ministerial Extracts only)

Read Full debate
Committee stage
Wednesday 29th January 2025

(1 week, 3 days ago)

Public Bill Committees
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 29 January 2025 - (29 Jan 2025)

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

None Portrait The Chair
- Hansard -

For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.

Stephen Kinnock Portrait The Minister for Care (Stephen Kinnock)
- Hansard - - - Excerpts

Q I have a specific question about the period between the legislation passing in your Parliament and the commencement of its provisions and the implementation of voluntary assisted dying. Can you say a little more about what had to be done in that period: the institutional arrangements that were needed between the Act’s passage and its commencement, and the training, capacity building and practical measures that you had to put in place? Did you do that from a standing start, so that in that 18-month period you went from having no training and no institutional set-up to being ready to take the system forward?

Dr Fellingham: Our law was passed on 19 December 2019 and came into effect on 1 July 2021. Ostensibly we had an 18-month period, but of course something fairly dramatic in health happened in 2020. Despite that, what happened at Department of Health level began first. The Department of Health set up an implementation leadership team and gathered specialists together from all across Western Australia in various different aspects. They had eight different workstreams looking at the eight different parts of the Act that they had to operationalise—the pharmacology, the substance and what that was going to look like, the doses and how it was going to be administered, the set-up of the pharmacy, and things like that. Each of those eight workstreams worked everything out at a Department of Health level.

Approximately six months before the law was enacted—on reflection, that was probably not long enough, but covid was very much complicating everything at the time—they set up a working group with the clinical leads in the various health service provider organisations. We were then tasked with taking that broad overview and turning it into a service at the point of delivery, on the understanding that we understood the nuances and expectations of the different hospitals and health systems in which we operated.

I will not lie: it was an enormous task. I leant very heavily on our wonderful Victorian colleagues who had gone first. I do not know what I would have done if I had been the first to pave the way. Subsequently, I have been able to offer that level of assistance to each of the other states and territories that have gone after Western Australia, and then of course to the UK, Scotland and Jersey, which I have been working with quite a lot. There is a wonderful international, collaborative sense of information sharing and wanting to get this right, learning from experience and not reinventing the wheel.

The vast majority of the laws that apply across the whole of Australia and New Zealand are quite similar, and they are similar to what you are planning to legislate for in the United Kingdom. A lot of fantastic groundwork has been laid already, and it can be done even in a challenging healthcare context, like covid or our resource limitations.

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

Danny Kruger Portrait Danny Kruger (East Wiltshire) (Con)
- Hansard - - - Excerpts

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

--- Later in debate ---
Neil Shastri-Hurst Portrait Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse (North West Hampshire) (Con)
- Hansard - - - Excerpts

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?

None Portrait The Chair
- Hansard -

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.

None Portrait The Chair
- Hansard -

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

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

Sir Roger, can I ask about mainstream delivery?

None Portrait The Chair
- Hansard -

I am sorry but we have to move on.

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

(Limited Text - Ministerial Extracts only)

Read Full debate
Committee stage
Thursday 30th January 2025

(1 week, 2 days ago)

Public Bill Committees
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 30 January 2025 - (30 Jan 2025)

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

None Portrait The Chair
- Hansard -

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

Kit Malthouse Portrait Kit Malthouse (North West Hampshire) (Con)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

Doctors?

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

None Portrait The Chair
- Hansard -

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

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

(Limited Text - Ministerial Extracts only)

Read Full debate
Committee stage
Thursday 30th January 2025

(1 week, 2 days ago)

Public Bill Committees
Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 30 January 2025 - (30 Jan 2025)

This text is a record of ministerial contributions to a debate held as part of the Terminally Ill Adults (End of Life) Bill 2024-26 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Neil Shastri-Hurst Portrait Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
- Hansard - - - Excerpts

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 Portrait Kit Malthouse (North West Hampshire) (Con)
- Hansard - - - Excerpts

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.

Simon Opher Portrait Dr Simon Opher (Stroud) (Lab)
- Hansard - - - Excerpts

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 Portrait Danny Kruger
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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.

Marie Tidball Portrait Dr Tidball
- Hansard - - - Excerpts

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 ---
None Portrait The Chair
- Hansard -

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

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

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.

None Portrait The Chair
- Hansard -

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 ---
None Portrait The Chair
- Hansard -

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 Portrait Kit Malthouse
- Hansard - - - Excerpts

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 Portrait Kit Malthouse
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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 Portrait Kim Leadbeater
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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.

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Sarah Green Portrait Sarah Green
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Q To follow up on what you just said about legislative consent, in October of last year, the Senedd voted against Julie Morgan’s assisted dying motion. In your opinion, what implications does that have for the Bill and its progress?

Professor Lewis: A motion was put forward by Julie Morgan that was supported by three or four Members of the Senedd, which was broadly in support not of this specific Bill, but of the purpose of this Bill, and it was defeated, as you say, after a full debate on the Floor of the Senedd. Formally, legally and constitutionally, that is of no consequence, because it was not a legislative consent motion, and of course, as I said earlier, this Parliament is able to do what it likes. It could totally disregard that. Whether that would be a prudent or an appropriate thing to do, or even what one might describe as a constitutionally appropriate thing to do, is another matter.

I think it reinforces the point that there is a significance in making sure that scrutiny of the Bill has a Welsh focus. You might consider, for example, making different provision in Wales. How do you respect what was a democratic vote in the Senedd in Cardiff? Well, you might consider having different commencement provisions—I am not advocating this, it is just an example of what you might do. Commencement of the Bill in Wales might happen in a different way, on the assumption it was passed. You might put that in the hands of Welsh Ministers and the Senedd, just as an example.

Sarah Sackman Portrait The Minister of State, Ministry of Justice (Sarah Sackman)
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Q To be clear, I am here as a Government Minister on this Committee, and the Government are entirely neutral on the Bill, so we do not take a position on the substance of the issues you have raised. Clearly, the draft Bill is intended to apply in both England and Wales, as you say, and your note is extremely helpful in highlighting some of those issues that will need to be worked out. As a Government, we will work closely with the Welsh Government to assess the legalities and practicalities of any potential changes to the law.

You have highlighted in particular the distinctions between health law, which is a devolved matter, and the law on suicide, which currently is not devolved. On the first page of your written evidence, you draw out clauses 32, 31, 33 and 34 in particular as issues that we should focus on in ironing out those legalities. Is there anything else you want to add to that that you think that we as a Government should focus on in our work consulting with the Senedd?

Professor Lewis: I think it is important that both Governments understand how the implementation of what will be a pretty radical change in the law will happen on the ground within the health service and among those who are responsible for delivering social services. I am thinking of issues such as adult safeguarding, which in Wales has its own specific law and is slightly different from the arrangements in England. There are those kinds of nuances between the two territories, and I think it would be prudent to focus on them.

I also think it is wise to bear in mind that Wales has certain statutory bodies whose interests might extend to the Bill. For example, there is the Older People’s Commissioner for Wales, in particular; there is the Future Generations Commissioner for Wales as well. I think it is important that there is some forum, some scope, for those people also to be involved in how this is shaped.

Sarah Olney Portrait Sarah Olney
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Q Dr Price, I am really glad that we are able to have the Royal College of Psychiatrists in front of us today; thank you for making the time. I want to ask you about paragraph 11 of your written evidence, which states that it is the royal college’s view that the Mental Capacity Act

“is not sufficient for the purposes of this Bill.”

Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?

Dr Price: Thank you. In answering this, I will also refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.

We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.

As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.

One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.

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Lewis Atkinson Portrait Lewis Atkinson
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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 Portrait Kit Malthouse
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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 Portrait Rachel Hopkins
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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.

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Daniel Francis Portrait Daniel Francis
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On a point of order, Mrs Harris. Yesterday, we heard evidence about the impact of the Bill on different groups with protected characteristics, including age, disability, race and sexual orientation. We heard from the EHRC, an arm’s length body of the Government, that it strongly recommends that a full impact assessment, a human rights assessment and a delegated powers memorandum be undertaken before the Committee begins line-by-line scrutiny.

We have also heard from witnesses about the impact that the Bill will have on disabled people, from Disability Rights UK and others, on black and minority ethnic people, from Dr Jamilla Hussain, from LGBT people, from Baroness Falkner, and on those from a low-income background, from Sam Royston of Marie Curie. We heard from Dr Sarah Cox and Dr Jamilla Hussain that evidence from their work shows that this Bill has a higher probability of pushing minority groups further away from seeking healthcare, while inequality pre-exists. As observed through the pandemic and from available data, minority groups do not always trust that their interests will be best represented in institutions that would enable the facilitation of someone’s death, should this Bill become law.

I therefore believe that on the basis of that advice, so as not to inadvertently widen health inequalities through Bill, it is essential to have health impact assessments. I appreciate that an equality impact assessment will be produced for Report stage, it will not be available for detailed line-by-line scrutiny. When we agreed the timetable for line-by-line scrutiny last Tuesday, we were not aware that this assessment would be produced, given it was first reported to the House during the money resolution last Wednesday. There is a risk that there will be a bigger impact on people with protected characteristics, and this will not be understood fully until the Government have produced the equality impact assessment. As things stand, that means that we will move into line-by-line scrutiny of the Bill on 11 February without a full understanding from the assessment of the impact of the Bill.

I am therefore minded to request a short Adjournment of the Committee so that, as advised, we can receive the assessments before we progress to line-by-line scrutiny. Please will you advise me, Mrs Harris, how I could secure such a motion to adjourn the Committee until we are in receipt of the evidence, as advised by the witnesses yesterday?

Sarah Sackman Portrait Sarah Sackman
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Further to that point of order, Mrs Harris. I want to clarify the Government’s position. As the Committee knows, the Government are neutral on the Bill, but once the Committee has concluded its work and prior to Report, we are committed to publishing the ECHR memorandum, a delegated powers memorandum, the economic impact assessment that was committed to during the money resolution debate, and an assessment of the equalities impact of the Bill. In terms of the timing, it is necessary that the impacts that are assessed be of the Bill as it is brought forward. If the Bill is liable to change via amendments proposed by members of this Committee, it is important that we know what it is that we are assessing the impact of. That is why the proposed timing is to publish the impact assessment at that stage. The point is that before Members of the House come to a vote on Report and Third Reading, they will all have before them the impact assessment in respect of equalities and all those other aspects of the Bill.

Danny Kruger Portrait Danny Kruger
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On a point of order, Mrs Harris.