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

Stephen Kinnock Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[The Minister for Care (Stephen Kinnock)]

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.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I call the shadow Minister, Dr Kieran Mullan.

--- Later in debate ---

[The Minister for Care (Stephen Kinnock)]

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 (Strangford) (DUP)]

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.

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

Stephen Kinnock Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Jack Abbott]

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.

[The Minister for Care (Stephen Kinnock)]

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]

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]

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.

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

Stephen Kinnock Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

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

[The Minister for Care (Stephen Kinnock)]

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]

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 (East Wiltshire) (Con)]

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?

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

Stephen Kinnock Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Kim Leadbeater]

Absolutely, Ms McVey—thank you for allowing me to make some introductory comments.

Amendments 178 to 180, 182 and 193 simply clarify that only persons in England and Wales may be provided with assistance in accordance with the Act, and only medical practitioners in England and Wales can carry out the required roles at each stage of the process. Hopefully, this is a nice straightforward one to get us started.

[The Minister for Care (Stephen Kinnock)]

I thank my hon. Friend the Member for Spen Valley for her introductory comments. The Government will continue to remain neutral on the Bill and do not hold a position on assisted dying. I want to make it clear that I, along with the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, are speaking in Committee not as Members of Parliament, but as Government Ministers responsible for ensuring that the Bill, if passed, is effective, legally robust and workable.

To that end, we have been working closely with the hon. Member for Spen Valley and, where changes have been mutually agreed on by herself and the Government, we will offer a technical, factual explanation for the amendments. Therefore, I will not be offering up a Government view on the merits of any proposed changes put forward by other Members, but I will make brief remarks on an amendment’s legal and practical impact to assist Members in undertaking line-by-line scrutiny.

[Rebecca Paul (Reigate) (Con)]

May I ask how what the Minister has just said interacts with voting? He set out clearly his involvement in the Committee, so how does that impact any votes that he will take part in during it?

[Stephen Kinnock]

I am on the Committee as a Member of Parliament and I vote as such. When I speak on the Committee, I speak as a Government Minister in order to provide factual and technical explanations. As the Bill is a matter of conscience, I will be voting with my conscience on all the amendments as they come forward.

The amendments that we are now debating have been tabled by my hon. Friend the Member for Spen Valley in consultation with the Government. They relate to the location of the person seeking assistance under the Bill and are designed to ensure that the service can only be accessed by an individual present in England and Wales, with a view to preventing medical tourism.

I will take the amendments in turn. Amendments 178 and 193 would ensure that only a terminally ill person in England or Wales may be provided with assistance in accordance with the Bill. Further to that, a requirement is placed on the co-ordinating doctor to ascertain whether, in their opinion, the person who made the first declaration is in England and Wales as part of their first assessment. Amendment 179 would limit the assistance that may be provided in accordance with the Bill to assistance in England or Wales only. Amendment 180 would require the steps taken under clauses 5, 7, 8 and 13 that relate to both declarations and both doctors’ assessments to be taken by persons in England or Wales.

Amendment 182 would limit the provision of clause 4(3), where a person indicates to a registered medical practitioner their wish to seek assistance to end their own life, to cases where the person is physically present in England or Wales. It would prevent people who are outside of England or Wales from accessing assistance in accordance with the Act—for example, by online consultations from abroad.

As I said earlier, the Government will continue to remain neutral on the substantive policy questions relevant to how the law in this area could be changed. That is, as I have made clear, a matter for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to Members in considering the Bill and the amendments tabled by my hon. Friend the Member for Spen Valley.

Amendment 178 agreed to.

[Sarah Olney (Richmond Park) (LD)]

I beg to move amendment 34, in clause 1, page 1, line 4, leave out “capacity” and insert “ability”.

This replaces the concept of capacity based on the Mental Capacity Act and replaces it with a new concept of ability which is defined in NC1.

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

Stephen Kinnock Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Naz Shah]

I thank my hon. Friend, but I feel that the point is being missed. It is true that there is no framework, but for somebody to get to this point in the first instance they need to have a terminal illness. There is a framework around domestic violence, and domestic violence laws exist for everybody. Frameworks already exist for women fleeing domestic violence, and there is no shortage of attempts to try to get those legal frameworks right across society. That is why we had the Domestic Abuse Act 2021, why we have committed to halving violence against women and girls, and why the Prime Minister made a personal commitment in that regard—and rightly so.

There has already been a test case in which a judge said that medics have an obligation in this context. An hon. Member referred yesterday to assisted dying being a treatment, although I disagree, and we had that conversation later.

[The Minister for Care (Stephen Kinnock)]

That was a misunderstanding; I was talking about “treatment” as a legal term.

[Naz Shah]

No, I was talking about another hon. Member, not the Minister. We already have laws to protect people from domestic violence, but that does not mean that they necessarily access them.

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

Stephen Kinnock Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Kim Leadbeater]

I am going to finish, if I may.

We need to be really careful that we take a person-centred approach, as happens now. Doctors, medical practitioners and healthcare professionals quite rightly take a holistic patient-centred approach. That approach will be further enhanced by the robust training the Bill incorporates, and by adding the extra layers of safeguards and protection. Really importantly, it would open up conversations about death and dying.

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairmanship, Mr Efford.

As previously stated, my role, and that of the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, is not to give a Government view, given that the Government remain neutral on the Bill, but to outline the legal and practical impacts of amendments tabled.

The amendments are intended to add a new step in the process set out in the Bill, requiring consultation with a palliative care specialist. The purpose of amendment 281 is to require a person to have met a palliative care specialist before completing the required steps and assessments to end their life. The purpose of the amendment is to ensure that the person has understood the full range of end of life options available to them. Our assessment suggests that the present drafting, adding a subsection to clause 1(2), would not achieve that effect without further amendments to other clauses in the Bill. The amendment would increase demand on palliative care specialists and, should Members decide to amend the Bill in this way, we would need to work with the NHS and other provider organisations to assess how to operationalise it.

Amendments 298 and 299 would require the co-ordinating doctor to have received confirmation that the person seeking an assisted death has had a consultation with a specialist in palliative medicine about palliative care options before they are able to make a first statement under clause 7(3)(a). That would mean that a co-ordinating doctor would not be able to make a statement following a first assessment, and therefore refer a person to the independent doctor for a second assessment, unless the person had had a consultation about palliative care options with a palliative care specialist. As with previous amendments, the amendment would increase demand for palliative care specialists, and we would need to work with the NHS and other provider organisations to assess how to operationalise it, should hon. Members decide to pass amendments in that area.

--- Later in debate ---

[Naz Shah]

I just have some concluding remarks. None of the amendments was voted for. I feel that in the clause 1 stand part debate, huge opportunities have been missed. I have talked a lot, throughout the debates, about the issues of people from ethnic minority communities. Opportunities were missed to safeguard disabled people and people from ethnic minority backgrounds.

My hon. Friend the Member for Ipswich made a point about amendments being clear, and about ambiguity. The truth is that if the amendments were supported in principle, they could have been tidied up by Government. There are some good amendments that could have been clarified by the Government. In principle, they were good options. I struggle with the whole narrative throughout the debate on clause 1: “Yes, we accept the principle, but we are not going to do it because it is ambiguous or the wording is incorrect.” There is lots of wording that we will debate throughout the rest of the Bill that is not quite clear, and that is the whole point of going through this exercise. Going forward, I encourage us, as the hon. Member for Reigate did before me, to do as we have been doing, with sincerity, in trying to make this Bill the best in the world it can be, as my hon. Friend the Member for Spen Valley intends.

[Stephen Kinnock]

I will make some brief remarks on the legal and practical effect of clause 1, as amended, to assist hon. Members in making their own assessment. Clause 1 sets out the eligibility criteria that a person must meet in order to request to be provided with lawful assistance to end their own life under the provisions of this Bill. A person must be terminally ill; this term is defined in more detail in clause 2.

Clause 1(1) sets out a further four requirements, which require that a person must also have the necessary capacity to make the decision, which is to be read in accordance with the Mental Capacity Act 2005; be aged 18 or over; be ordinarily resident in England and Wales and have been resident for at least 12 months; and be registered as a patient with a GP practice in England or Wales. This clause provides that, in particular, clauses 5 to 22 of the Bill require steps to be taken to establish that the person has a clear, settled and informed wish to end their own life and has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person in making that decision.

The clause, as amended by the insertion of new subsection (3), will ensure that the service can be accessed only by an individual ordinarily resident in England and Wales. That amendment, amendment 180, has been drafted to give effect to the policy intent of my hon. Friend the Member for Spen Valley for this legislation: that it is to apply only to those in England or Wales and is not to be accessed via medical tourism.

As I have said, the Government remain neutral on the substantive policy questions relevant to how the law in this area would be changed. The clause is a matter for the Committee and Parliament to consider, but the Government’s assessment is that the clause, as amended, is workable, effective and enforceable.

Question put and agreed to.

Clause 1, as amended, ordered to stand part of the Bill.

Clause 2

Terminal illness

[Danny Kruger]

I beg to move amendment 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.

This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.

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

Stephen Kinnock Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[The Chair]

I have received a manuscript amendment from the hon. Member for East Wiltshire that he wishes to move. As the hon. Gentleman knows, a manuscript amendment requires a very high bar and exceptional circumstances. I do not believe that exceptional circumstances are present, and he will be aware that further amendments can be proposed to the clause for consideration on Report. That is my decision on the matter.

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Mr Dowd. Although it is for Parliament to progress any Bill, the Government have a responsibility to make sure that legislation on the statute book is effective and enforceable. For that reason, the Government have worked with my hon. Friend the Member for Spen Valley; where changes have been agreed mutually between her and the Government, I will offer a technical, factual explanation of the rationale for those amendments. That applies to amendment 181 in this group.

This group of amendments is linked to how the Bill’s definition of a terminal illness applies to those with a mental disorder or disability. Amendments 399 to 401 would remove the term “medical condition” from the Bill’s definition of a terminal illness, so that only those with an inevitably progressive illness or disease would be able to request to end their life, rather than, as under the current drafting, those with a “disease or medical condition”.

The amendments could narrow the scope of those who may access assisted dying services. However, clinical advice suggests that the use of the terms has changed over time, may not be used consistently and remains debated in both medical and lay circumstances. Removing the term “medical condition” may lead to disputes or protracted debates about whether a particular condition is or is not a defined disease or illness, despite there being medical consensus around whether it will lead to death within six months.

[Danny Kruger]

I am grateful for that clarification, but it rather concerns me. Can the Minister elucidate exactly which conditions might fall into the category of medical condition that would not be captured by “illness” or “disease”? Does he accept the point that I made in my speech—that the interpretation of the law by the court will be that the phrase expands the definition of a terminal illness beyond illness or disease, as it is in the current law? What are the new conditions that will be captured by the term?

[Stephen Kinnock]

What the hon. Member will have picked up throughout this debate, on every day that we have met, is that the Government are concerned about adding or taking away terminology that delivers clarity, stability and familiarity.

I have to say that I am quite torn on the hon. Member’s amendment 399, because I absolutely see where he is coming from. It is one of those situations in which my position as a Government Minister is made somewhat more complex by my personal view that his amendment is perfectly reasonable. My instinct—speaking personally as a Member of Parliament, rather than as a Government Minister—is that the remaining terms in the Bill, if we removed “medical condition”, would continue to cover the waterfront or spectrum of conditions. It is possible that this is a case in which there has been an overabundance of caution on the part of the Government. I am delivering the Government’s position, but I want the hon. Member to know that that will not necessarily determine how I vote if this amendment does go to a vote.

[Danny Kruger]

I was going to remind the Minister that he is, in his strange Jekyll and Hyde personality, speaking as a Minister but voting as a Member of Parliament, so if he has given the Government’s view that my amendment is not acceptable, but he personally thinks that it is, I hope that he will vote for it.

[Stephen Kinnock]

It is a well-made case; I am still reflecting on it, because of the somewhat complex nature of my role on this Committee, but I am inclined to support the hon. Member’s amendment.

Amendment 11 also seeks to amend clause 2(3). Our assessment of the effect of this amendment is that a person who has a mental disorder and/or a disability may not qualify under the Bill as terminally ill, even if they have an inevitably progressive illness and can be reasonably expected to die within six months. There might be concerns from the point of view of the European convention on human rights and the Equality Act if the amendment were passed as currently drafted, because its effect would be to exclude people from the provisions of the Bill if they had a disability or a mental disorder. That may not be the intention of the hon. Members who tabled the amendment.

I turn to amendment 181. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have advised my hon. Friend the Member for Spen Valley in relation to the amendment. It clarifies that a person who seeks assistance to end their own life based only on a mental disorder or a disability, or both, would not be considered terminally ill for the purposes of the Bill. Such a person would therefore not be eligible to be provided with assistance to end their own life under the Bill. Someone who has a disability or a mental disorder, or both, and who also already meets all the criteria for terminal illness set out in the Bill would not be excluded by the amendment, as drafted. The amendment therefore brings important legal clarity to the Bill.

Amendment 283 sets out that a person who has one or more comorbidities, alongside a mental disorder within the meaning of the Mental Health Act 1983, would not be considered terminally ill by virtue of those comorbidities alone. The reality of modern healthcare is that many patients, not least those towards the end of life, will be dealing with several conditions or comorbidities. The term “comorbidity” in a clinical context can sometimes be used to distinguish the main problem that someone has experienced experiencing from additional but less serious problems, but it can also be used by those specialising in one or more other aspects of a patient’s care to distinguish their area of focus from other issues.

In the context of the Bill, the essential test is whether any morbidity, comorbidity or otherwise, meets the requirements in the Bill. Although it is unlikely that a terminal morbidity would be thought of as a comorbidity, it is not inconceivable that it might be, for the reasons that I have set out. The phrasing of the amendment, notably the term “alongside”, potentially increases that possibility. The effect might be that a condition that would otherwise be considered terminal would instead be considered a comorbidity alongside a mental disorder. The amendment would prevent a person with a mental disorder who would, but for the amendment, have been considered terminally ill from accessing assisted dying services under the Bill.

As I have said, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. However, to ensure that the legislation works as intended, we have advised the sponsor in relation to amendment 181, to further clarify the Bill such that only having a disability and/or mental disorder does not make a person terminally ill and eligible for assistance in accordance with the Bill.

[Jack Abbott (Ipswich) (Lab/Co-op)]

Most of the discussion on amendment 181 has centred on the word “only”. Just to get clarification on this point, would someone with an eating disorder who was later diagnosed with a terminal illness still be able to access an assisted death, if that were required under the amendment?

[Stephen Kinnock]

My answer to that question is yes. My understanding is that so long as the terminally ill, six-month criteria are met, that person would qualify for assistance under the Bill.

[Jack Abbott]

Just to be absolutely clear for everyone in the room, and in case I was not specific enough, if that terminal illness is a result of the eating disorder, rather than, say, of that person also being diagnosed with a terminal illness such as cancer, would they be covered under amendment 181?

[Stephen Kinnock]

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

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

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

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

[Stephen Kinnock]

The right hon. Member makes an excellent point. I think it goes back to our basic view that there are some amazing health professionals in our healthcare system who do fantastic work. Eating disorders are a truly tragic condition and, of course, there is all sorts of support in place. It is not always perfect or exactly how we would want it to be, but I think it would be a false move for the Committee to think that this is an either/or situation. This is a both/and situation. Of course it is not always perfect, but I think we should pay tribute to our amazing health professionals, who look after all sorts of people with all sorts of conditions, including eating disorders.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Does the Minister agree that the language of clause 2(1)(a)—

“cannot be reversed by treatment”—

is reassuring? Indeed, the written evidence from Professor Emily Jackson notes:

“Someone with a condition that is not inevitably progressive, or which could be reversed by treatment, would be ineligible under the Act.”

That covers the case raised by my hon. Friend the Member for Ipswich.

[Stephen Kinnock]

My hon. Friend makes an excellent point. She brings us back to the fundamental point made in the Bill, which is that it has to be “an inevitably progressive illness”. Eating disorders do not fall under that definition: that is very clear. I hope that that explanation and the observation that I have made on the other amendments are helpful to members of the Committee in their consideration.

[Kim Leadbeater]

I will keep my comments brief, because we have had a very thorough discussion today. I will first speak briefly to amendment 123, tabled by my hon. Friend the Member for Broxtowe. Amendment 123 would change “an inevitably” progressive disease to “a typically” progressive disease. [Interruption.] Is that the next grouping? Oh, I am peaking too soon—my apologies, Mr Dowd.

I will come back to my hon. Friend the Member for Broxtowe, but let me turn to amendments 399, 400 and 401, on the exclusion of “medical condition”, which the hon. Member for East Wiltshire submitted a few days ago, before the end of the recess. I looked at them over the weekend and was very interested to hear his reasoning for them today. This is the purpose of the Committee; I have listened carefully to what the hon. Gentleman has said, and he has made some valuable points. All along, I have taken the view that this legislation must not only be the strongest anywhere in the world, but be very clear in its intentions and leave no room for ambiguity regarding who is entitled to request assistance under its provisions.

I am very comfortable with the definition of terminal illness in the Bill, but across the world—I have done lots of research into this, as I know other colleagues have—some jurisdictions use the term “medical condition” or, actually, just the term “condition”, and others do not. Many in Australia do, but in New Zealand, for example, which has a similar law to what is being proposed here, “medical conditions” do not feature, nor do they in a number of states in America.

While I do not necessarily think that it would definitely be problematic to include the term “medical condition”, I appreciate the argument that the hon. Gentleman has made. We have to be as cautious as possible to ensure that the Bill achieves its purpose but does not create a lack of clarity. That point has been very well made.

The advice that I have received from officials is that, as the hon. Gentleman suggested, “medical condition” does not have a clear legal definition and could therefore be seen as imprecise. That does worry me. The purpose of the Bill is clear—it is in the title. It is to give choice to terminally ill adults at the end of life. They must have a clear, settled and informed wish, and be expected to die within six months, in circumstances that are inevitably progressive and cannot be reversed by treatment. The hon. Gentleman has, I believe, helped to make that even clearer, and I am grateful to him for doing so.

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[Lewis Atkinson]

I do, and I thank my hon. Friend for bringing my attention to that; I was struggling to put my hands on it.

In my view, clause 2 does a difficult job very well in tightly drawing eligibility criteria so that the Bill does what it says on the face of it—that it allows access for terminally ill adults, at the end of their life. By having a six-month prognosis, rather than anything else, it allows individuals to put their lives in order and have the best last months of their lives possible. I therefore speak against the amendments and in favour of the clause as drafted.

[Stephen Kinnock]

As usual, I will make brief remarks on the legal and practical impact of amendments, while emphasising that the Government continue to remain neutral on the Bill and on assisted dying more broadly. This series of amendments, which I will take in turn, seeks to change the definition of “terminally ill”, either widening or narrowing the cohort of people able to access assisted dying services.

Amendment 123 would change what it is to be “terminally ill” for the purposes of the Bill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment. That would widen the pool of those able to access assisted dying services by reducing the level of certainty that a doctor must have that the illness, disease or medical condition in question is progressive—from one that is “inevitably” progressive to one that is “typically” progressive.

Amendment 9 seeks to amend the definition of “terminally ill” such that it would not include a person who has an inevitably progressive illness, disease or medical condition that can be reversed, controlled or substantially slowed by treatment. The effect of the amendment is that such a person would not be eligible for lawful assistance to voluntarily end their own life. Should the amendment be accepted, the effect would be to restrict the eligibility for assisted dying services to a narrower category of patients than is currently set out in the Bill. The amendment may make assessment of a person’s prognosis and eligibility under the Bill more extensive, as it would be likely to require an assessment of a broader range of treatment options.

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[Naz Shah]

I apologise to my hon. Friend the Member for Sunderland Central; I was actually incorrect. The girls did not have capacity, so he was correct. However, in the cases that went before the court, those nine girls did not have capacity yet the judge made a decision that they should not be force-fed to keep them alive, and they should be allowed to die. Perhaps the Minister could comment on how the amendment would not meet that criteria. Would it fix that loophole?

[Stephen Kinnock]

I thank my hon. Friend for her intervention. I am just talking about the amendment to reduce the time from six months to one month. I will come on to the issue of eating and drinking in a second.

As amendment 282 would reduce the time within which the person is expected to die from six months to one month, it would also limit the number of people with a terminal illness who would be eligible for assisted dying under this legislation. Furthermore, there may be very challenging workability issues in delivering a service within one month, given the other time-dependent safeguards elsewhere in the Bill.

Amendment 51 would remove the requirement for the patient to have a six-month prognosis to be defined as “terminally ill”. If agreed to, it would expand the pool of people eligible for lawful assistance to voluntarily end their own life beyond those with a life expectancy of six months or less. In other words, it would remove the timeframe requirement of when death can be reasonably be expected.

Amendment 234 would widen eligibility to include cases of neurodegenerative diseases, illnesses or medical conditions where a person is reasonably expected to die within 12 months. Matters such as this are for the Committee, and ultimately for Parliament, to decide, but it is clear that the effect of the amendment would be to broaden the number of people eligible for lawful assistance to voluntarily end their own life under this legislation.

Amendment 10 would provide that, if treatment exists for a person’s progressive illness, disease or medical condition that alters the overall prognosis of that person’s condition, they are not terminally ill and would not be eligible for assisted dying services.

Amendment 402 would exclude a person who would not otherwise meet the definition of “terminally ill”—namely, being diagnosed with an inevitably progressive illness with six months or less to live—if that person meets that definition as a result of stopping eating or drinking. The effect of the amendment would be to prevent a person from being defined as “terminally ill” as a result of their own actions of stopping eating or drinking, or both. The Government’s analysis suggests that this may also exclude people who are terminally ill under the definitions of the Bill and who are, for various reasons, unwilling or unable to eat or drink. For example, it may include those with conditions such as oesophageal cancers, which could result in their being unable to eat or drink.

Furthermore, it is unclear whether someone who is on intravenous fluids or being fed through a feeding tube would be considered to have stopped eating or drinking under the amendment. I think that addresses the concern expressed by my hon. Friend the Member for Bradford West, but she is welcome to intervene again if she would like to. The amendment could therefore lead to uncertainty over the person’s eligibility for assistance under the Bill.

The Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. Questions around the definition of terminal illness and who should be eligible to access voluntary assisted dying under the legislation are matters for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee in considering the Bill and the amendments tabled by various Members.

[Kim Leadbeater]

Colleagues will be pleased to know that, despite my copious notes, I do not intend to speak for very long, because I believe we have had a very thorough and robust debate on these issues. The Minister makes a valuable point on amendment 402, which I do not think anyone else raised. Coincidentally, it relates to the person in the Public Gallery this morning, whose mum had a horrible form of cancer and had to have her tongue removed. She would have stopped eating or drinking, but it was not a choice; it was an inevitable result of her condition. She would have been excluded from having an assisted death, which I am sure is not the intention of my hon. Friend the Member for Bradford West.

We have had an excellent debate and covered a lot of ground. I do not intend to add anything more on this group of amendments. I will only say that if we get a move on, we might be able to get through clause 2 before we close at 5 o’clock.

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[Lewis Atkinson]

I rise to speak briefly in opposition to the amendments. When the chief medical officer gave oral evidence to the Committee, the hon. Member for Richmond Park asked him:

“Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?”

The response was very clear:

“If I am honest, I think it would be extremely difficult.”

It is difficult in both directions, because some illnesses or diseases can be terminal, but are not necessarily terminal. People can live with prostate cancer for many years. Setting out in the Bill a list of specific diseases or illnesses that would be eligible risks achieving exactly the opposite of the amendment’s intention. To quote Professor Whitty again:

“Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting…I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

Further to the point that the hon. Member for East Wiltshire made about on judicial oversight, my understanding is that giving power to the Secretary of State to make a list that includes only some diseases is absolutely inviting action through the courts on the reasonableness of why one disease is on the list while others are not. We would end up in much more of a legal quagmire than we otherwise would. The safeguards that we have talked about, as to eligibility criteria, terminality and capacity, are in the Bill as drafted. Those are the safeguards that we need. A list would further muddy the water and would create confusion.

[Stephen Kinnock]

I have some brief comments to make. Amendments 12 and 13 seek to further define a terminal illness for the purpose of the Bill; I will set out some details about their effect. The amendments would add a requirement that a list of a terminal illnesses for which people are eligible to seek assistance under the Bill be specified in regulations made by the Secretary of State. The effect would be that only a person who has an illness, disease or medical condition listed in regulations, and who meets the other eligibility criteria, would be eligible to be provided with lawful assistance to voluntarily end their own life.

I draw the Committee’s attention to the chief medical officer’s oral evidence given on 28 January, which was well articulated by my hon. Friend the Member for Sunderland Central. The CMO said that multiple diseases may interact, making it

“quite difficult to specify that certain diseases are going to cause death and others are not”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

It is also the case that many illnesses, diseases or conditions that may be terminal in one case may not be so in another. Committee members may therefore wish to consider where a focus on specific illnesses or diseases, rather than on the facts of an individual case, could aid clinicians in their decision making.

The amendments also include a discretionary power for the Secretary of State to make regulations that expire after 12 months in order to make temporary additions to the list of illnesses that meet the definition of terminal. It is not clear what types of illnesses, diseases or medical conditions are intended to be captured in such regulations. I hope that those observations on the purpose and effect of amendments 12 and 13 are helpful to the Committee in its considerations.

[Danny Kruger]

I sense that the wish of the Committee is probably not to accept the amendment, so I do not propose to press it to a Division, but we have just heard quite clearly, in response to the amendment, that the Bill is essentially permissive. Once again, we have declined to put clear parameters around the eligibility for this new law. We have heard specific conditions mentioned so many times in the course of the debates over the preceding months. It is a shame that we are not prepared to state those conditions clearly in the Bill, with the opportunity for Parliament to amend them over time.

I end by echoing a point that the hon. Member for Spen Valley made about the importance of good data. I hope that if the Bill passes, we will have the best data collection in the world. I am afraid to say that data collection is not good in other jurisdictions. Nevertheless, it is possible to see how often in Oregon, Australia, Canada, and Europe, albeit in a minority of cases, conditions that most people would not recognise as deserving of assisted dying, including anorexia, arthritis, hernias and diabetes, are listed as causes of death. Indeed, so is frailty, as I discussed earlier.

My fear is that if we pass the Bill, we too—if we do data collection properly—will have a shameful appendix to the annual report showing that people have had an assisted death for reasons that most people would regard as inappropriate. I will leave it there. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.—(Danny Kruger.)

This amendment is consequential on Amendment 399.

Amendment proposed: 402, in clause 2, page 2, line 6, at end insert—

“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”—(Naz Shah.)

This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.

Question put, That the amendment be made.