Terminally Ill Adults (End of Life) Bill

Debate between Sarah Olney and Kim Leadbeater

Report stage
Friday 13th June 2025 Commons Chamber

[Kim Leadbeater]

I have nearly finished.

I have had many such conversations over recent months with those who support the amendment, including with palliative care doctors, nurses, hospice staff, GPs, Hospice UK and Marie Curie. I thank them all for their constructive engagement with the Bill. I cannot imagine that anyone in this place is not truly grateful for the outstanding work done every day by the wonderful people working in palliative and end-of-life care in every one of our constituencies. Many of us, if not most of us, will have personal experience of the kindness and compassion that those people have shown to our own families and friends.

But this is not an either/or conversation. Palliative and end-of-life care and assisted dying can and do work side by side to give terminally ill patients the care and choice that they deserve in their final days. Just as there should not be an either/or for dying people, there should also not be an either/or for us as legislators in having to choose between supporting assisted dying or other end-of-life choices. That is why I am supporting amendment 21: to ensure that in this place we channel our energies into supporting all options available to terminally ill people—something that I have always committed to do.

[Sarah Olney (Richmond Park) (LD)]

It is a privilege to be called at this stage in the debate. My principal reason for voting against the Bill on Second Reading was my concern that vulnerable people would be put at risk. I agreed to serve on the Bill Committee to do what I could to allay my concerns about that issue and address some of the issues raised by others. I do not think that the revised version of the Bill properly or completely reflects the concerns expressed on a multitude of different occasions. Consequently, it does not fully mitigate the risks to vulnerable groups.

We all recognise that decision making of any kind does not take place in a vacuum and that, in all parts of life, we live in a particular context. The Equality Act 2010 recognises that many people face discrimination or unfair treatment as a result of particular characteristics and that reasonable steps should be taken to eliminate that. It was very clear from the oral evidence sessions that particular care has to be taken to assess the context within which people are making the decision to seek an assisted death: if they suffer from a mental illness or eating disorder, if they are from a low-income or ethnic minority background, if they suffer from a disability or if they are in an abusive relationship. Those factors are likely to lead to an increased risk that someone will seek an assisted death that they would not have sought if those factors were not present.

In Committee, I and others made the point that it would have been desirable to have received an equality impact assessment before the detailed work of Committee scrutiny had begun, so that Committee members had a sense of how the proposed legislation would impact groups that we know can suffer disproportionate levels of disadvantage.

Terminally Ill Adults (End of Life) Bill (Twenty-ninth sitting)

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Kim Leadbeater]

This is a standard power for regulations to include the power to make incidental, consequential, transitional or saving provision. This is a minor amendment, and it is a standard but vital measure to ensure the legislation works effectively and cohesively.

[Sarah Olney]

The clause, when amended by amendment 545, which we will vote on shortly, brings into stark relief how much of the Bill is to be left to regulations and how little say MPs will eventually get over it. When it comes to voting on Third Reading, MPs will have little certainty on how the Bill will actually operate—so much is to be taken on trust. If, through the gaps and grey areas, people come to harm, that will be on Parliament for failing to address these issues while we had the chance.

Let us consider all the powers that the Bill creates. Clause 5 creates a power to determine what goes into the first declaration, subject to the requirements of amendment 418. Clauses 5, 8 and 19 create powers to determine the training, qualifications and experience of the medical practitioners, with no minimum floor, and we do not even know who will ultimately decide the training—that, too, is to be left to regulations under amendment 186. Clause 6 creates powers to determine the forms of proof of identity, with no requirement for those to be photographic or to prove residency.

Clauses 7, 13 and 21 create powers to determine the statements, declarations and reports required from the doctors and the applicant. Clause 11 creates powers to make regulations for the replacement of the co-ordinating doctor if they have died, are ill or are otherwise unable or unwilling. Clause 15 creates a new power to determine who can be a proxy. Clause 20 creates a power for the approval of drugs and substances to end people’s lives. Clause 28 creates a power to determine the prescribing, dispensing and transporting of approved lethal substances —the right hon. Member for North West Hampshire has called this purely administrative. Clause 29 creates a power to make regulations relating to the registration, certification and recording of deaths. Clause 30 creates a power to issue codes of practice that practitioners must simply “have regard to”.

Clause 32 will create an extraordinarily broad Henry VIII power, as we are completely in the dark as to how the assistance will actually be provided. Clause 33 creates a power to determine which events should be notified to the commissioner and how to enable the exchange of information. That is all to be decided by the Secretary of State, with the detail removed from the Bill.

All those things are to be subject to the negative procedure, except the training and qualification requirement for the first and second doctor, the codes of conduct, and the power for the Secretary of State to arrange for delivery of assisted dying. When a statutory instrument is made through the negative procedure, there is no need for a vote. The only exception, by convention, is when the Leader of the Opposition asks for one, but they understandably would not do so on a conscience issue. In practice, Parliament will never get a say on these matters. Is the Committee content with that?

Even on affirmative statutory instruments, Parliament’s say is limited to a 90-minute debate on a motion that cannot be amended. Suppose that the Secretary of State published a code of practice on the assessment of capacity that MPs felt did not take sufficient account of mental health conditions. They would be faced with the option to vote for it despite its inadequacy, or to vote against it and risk creating a position where there are no codes of practice at all. That is an impossible position to place parliamentarians in, yet that is what the Bill does. It is a massive blank cheque to the Executive.

I say to Government Members, who I know have great faith in the Health Secretary, that according to the Interpretation Act 1978, “Secretary of State” means any Secretary of State. The powers will not necessarily be exercised by the Health Secretary; they could be exercised by another Secretary of State. Indeed, under the doctrine of ministerial delegation, they could be delegated to another Minister who is not a Secretary of State.

I make these points to illustrate that there is an issue of principle that cannot be waved away on the basis that we think someone sensible will exercise the powers. Parliamentary scrutiny matters, and I very much regret that the Bill avoids it through these wide regulation-making powers.

--- Later in debate ---

[Sarah Olney]

I rise to speak to my amendments 531 and 535 and to amendment 490 in the name of my constituency neighbour, my hon. Friend the Member for Twickenham (Munira Wilson).

I welcome what the hon. Member for Spen Valley has just said about needing more time to get this right. As I said earlier, there is still so much that has been left to secondary legislation. I regard that as unsatisfactory in itself, but the fact that we are going to take time to get it right will surely go some way to mitigating some concerns.

I have heard raised around the estate on a number of occasions today the concern that the four-year gap between passing the legislation and implementing it will take us right up to the next general election. I have to say that I share those reservations, even though I am not a member of the party of government, about how the general election campaign will intersect with the implementation of this legislation. I share people’s fears that this whole process will get enmeshed in party politics, which we have hitherto been able to avoid in the Committee, but nevertheless could create a real danger for successful implementation.

I did think that the auto-commencement of this Bill after two years was a little bit reckless. The extension to four years at least permits some potential improvement in palliative care—to re-ignite the spirit of consensus, as that is something that we all want to see—but an NHS already grappling with long waiting lists and staffing shortages could buckle under the added burden of implementing a complex new framework leading to rushed or inconsistent application. An automatic commencement of the new laws, regardless of the situation in the NHS, could leave patients and healthcare workers unsupported.

It is important is that, before the moment comes—whenever that is—Parliament should be fully informed as to how the service will be provided and the strength of other provisions, so that MPs can be confident that those choosing to end their lives through this service are given a fair choice and are not being pushed down a single pathway. We must also have confidence that the medical professionals and panels involved have received adequate training.

Amendment 531 would ensure that at least we go into this with our eyes open and that shortcomings are flagged if not addressed. It would provide that the critical provisions of the Bill, without which assisted dying cannot lawfully operate, do not come into force until a report is made setting out the readiness of services to be provided under the legislation and that the training has been provided. Similarly, amendment 488, in the name of the hon. Member for York Central, mandates a statement from both Houses that all necessary regulations are in place. This would prevent a premature roll-out without clear rules. These steps would not halt progress; they would ensure we are ready to proceed.

Amendment 490, in the name of my hon. Friend the Member for Twickenham, does two important things. First, it requires that if the Secretary of State wants to commence before the auto-commencement deadline, they must publish a report covering the same matters covered by the report under clause 35. This would not be a new requirement, but would instead bring it forward. Crucially, that report would include details about the provision and availability of palliative care services in England and Wales.

Secondly, amendment 490—this is it goes further than my amendment 531 and amendment 488—requires that regulations bringing the Act into force prior to the auto-commencement deadline use the affirmative procedure: in other words, that there will be a vote in Parliament. It stands to reason that if the Secretary of State wants to go quicker than the four-year deadline, then Parliament ought to be able to consider whether all necessary preparations have been done and to refuse early commencement if that is not the case.

Amendments 488, 490 and 531 would not interfere with the auto-commencement point in four years’ time: when four years is reached the whole scheme will come into force. Those amendments would not prevent that, but they would achieve greater oversight and accountability if the Secretary of State decided to commence early. I hope that even if the hon. Member for Spen Valley is not minded to accept striking out the auto-commencement provisions, she will still accept these amendments.

[Kim Leadbeater]

The hon. Member makes some very fair points, but I think they will be covered by my new clause 40.

[Sarah Olney]

I am grateful for that intervention, but the crucial point is the vote in Parliament, so that MPs get not only an opportunity to consider whether sufficient progress has been made—as per new clause 40—but a vote to confirm that they are content for the legislation to proceed.

[Sarah Olney]

I refer to my earlier comments: there are few enough opportunities for MPs to have any further control over how this legislation is going to be implemented. I do not think that it is asking too much to want a further opportunity to be mandated, and not left—dare I say it—to the vagaries of the Backbench Business Committee. There are Opposition days, but this is cross-party, conscience issue. I can speak only for my own party, but I think there are a number of other issues that the Opposition would want to use those debates to address. Taken together, these amendments would ensure that Parliament is properly informed if the Secretary of State decided to commence the scheme before the four-year auto-commencement deadline.

I want to address how the Bill will be implemented in Wales. On 23 October 2024, in anticipation of the Bill being published, Senedd Cymru debated a motion calling on the Welsh Government to

“a) support the principles of assisted dying; and

b) support Westminster parliament to introduce a compassionate assisted dying law in England and Wales.”

The motion was defeated 19 to 26. Among those who voted against were a number of Welsh Government Ministers, including First Minister Eluned Morgan, and I believe that in three political parties—Labour, Plaid and the Conservatives—there was a majority against. In that context—as Professor Emyr Lewis, who gave evidence to the Committee, has stated—it would be constitutionally wrong to pass the Bill without the consent of the Welsh Senedd. He believes that this is different from other instances where legislation has been passed by Westminster against the will of Wales:

“This is not the equivalent, for instance, of trying to re-base the UK’s internal markets following the chaos of Brexit. When the UK Parliament passed Acts ignoring refusal of consent from Cardiff or Edinburgh, it did so in what were considered to be the interests of the economic coherence of the UK. This Bill, however, is a different sort of creature. It is a Bill which would bring about a profound change in the law relating to life and death, where there are strongly held (and expressed) moral, religious and cultural views against as well as in favour. How can it be constitutionally appropriate for the UK Parliament to pass such a Bill for Wales, when the Senedd has indicated its opposition by democratic vote after a thorough debate?”

[Kim Leadbeater]

I hope the hon. Member can acknowledge that the motion voted on in the Senedd was very different from the legislation before this Parliament. I hope that I can reassure her, as I have previously, that I am in contact with the Senedd and will be meeting Welsh Ministers. New clause 37 will hopefully also provide some reassurance on issues around devolution.

[Sarah Olney]

I again refer to what I said earlier: I fear this is another example where, instead of debating and agreeing these points in Committee or elsewhere in Parliament, we are delegating these matters to be decided elsewhere by some other people, not in the legislation that we are debating and voting on.

I reiterate that the Senedd has already made its view clear. It may not have been a binding vote. It may not have been voting on this specific piece of legislation. However, I think the will of the Senedd is clear: they do not want an assisted dying Bill imposed upon them, and that is what the evidence of Professor Emyr Lewis told us.

[Kim Leadbeater]

I think that is a very inaccurate representation of the vote that took place in the Senedd.

[Sarah Olney]

I am sorry that the hon. Lady feels that.

The complicating factor here is that the criminal law is not devolved to Wales, but health is, as is safeguarding. One possibility is to seek to respect devolution strictly, by either changing the law or giving the power to the Secretary of State to change the law in respect of what is reserved, while giving to the Welsh Ministers the powers in respect of what is devolved. The problem is that the Bill does not quite do that, even with the amendments that have been tabled by the hon. Member for Spen Valley. Those amendments fail to properly identify what is and what is not devolved; instead, they kick the can down the road.

Future litigation might be required to figure out the precise boundaries. For example, regulation of health professionals is a reserved matter, but adult safeguarding is a devolved matter, so is the training of those health professionals on spotting coercive control a reserved or a devolved matter? The Bill does not answer that question. The solution therefore carries a real risk. If Wales decides that it does not want assisted dying and therefore does not provide it on its NHS, and the Welsh Ministers decide not to set up proper training and regulatory programmes in respect of the safeguarding issues raised, the position in Wales will be that it is decriminalised, so the service can be provided by private providers charging a fee and not necessarily properly trained in safeguarding. That is not a sustainable middle ground, so it would naturally pressure Wales to move towards commissioning such services itself.

In other words, the Bill either respects devolution at the risk of creating a legal limbo, or it puts pressure on Wales to catch up with England, neither of which are desirable. Another alternative is to take away any choice that Wales might have on the matter entirely, and have the law apply in Wales in exactly the same way it does in England, including when it comes to the actual delivery of services. That would avoid the legal limbo problem, but at the cost of acting in a way that is constitutionally quite wrong.

That brings us to the solution that Professor Lewis proposed in his blog:

“How then might the Bill be amended to respect the Senedd’s vote on the matter of principle? One straightforward way would be to provide for different commencement provisions in the Bill. As things stand, under clause 42 of the Bill, most of the Bill will not come into force until the Secretary of State has brought it into force, with the approval of the UK Parliament. Why not provide that the Bill will only come into force in Wales when and if the Welsh Ministers bring it into force with the approval of the Senedd?”

That is what I seek to do through my amendment.

I can foresee three objections. First, it might be said that the criminal law is a reserved matter and therefore Parliament ought not to refrain from legislating for Wales or have different commencement arrangements for the criminal law in England compared with Wales, but Parliament is sovereign and can do what it wants. By the same reasoning, Parliament should never grant a temporary power to a devolved legislature to legislate on matters that are normally reserved, yet Parliament does do that.

The second objection might be that England and Wales are a single jurisdiction, and that there should not be a difference in the criminal law between them, but this misunderstands that, as a result of the devolution settlement, there are already differences in the criminal law of England and Wales. For example, in our law there is a defence of reasonable chastisement, which means that parents smacking their children would not be committing a criminal offence. Although the criminal law is not devolved to Wales, child welfare is and, using those powers on child welfare, the Senedd voted to abolish the defence of reasonable chastisement in Wales. That means that there is a difference in the criminal law of England and Wales. A position whereby assisting suicide was partially decriminalised in England but fully criminalised in Wales would not be an oddity. There is no principle of our constitution that says that the criminal law must be the same on both sides of the border.

The key issue is that the decriminalisation of assisted suicide, which the Bill will bring about, is not a stand-alone measure. What we are introducing is not something like the Swiss criminal code, for example, which does not criminalise assisted suicide when the person acted for non-selfish motives. Rather, it is a decriminalisation of assisted suicide that is contingent with complying with a detailed healthcare regulatory scheme, which is an issue that is devolved to Wales.

Finally, it might be objected that this might create difficult cross-border issues. As Professor Lewis put it in his blog,

“that would be true also if, for instance, the Scottish Bill did not become law. Far more difficult cross-border issues were successfully accommodated in the context of legislation, also involving profound ethical considerations, when the National Assembly for Wales (as the Senedd was then called) changed the law on organ donations.”

I accept that such a situation might require constitutional amendments at subsequent stages, but these could easily be made by the Government on Report.

Ultimately, when one looks at it in detail, having a different commencement provision for Wales is the only practical way of respecting the vote of the Senedd while not running the risk of creating a legal limbo. Finally, I draw the Committee’s attention to the supplementary written evidence of Professor Lewis, in which he commends my amendment 535.

Regardless of where we stand on assisted dying, we should respect democracy. The people of Wales, through their elected representatives—acting as they should, as representatives—have voted against assisted dying. We should respect that choice and not impose it on them, in whole or in part, without their consent.

Terminally Ill Adults (End of Life) Bill (Twenty-eighth sitting)

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Sarah Olney]

That is not a prospect I particularly want to reflect on, but it is worth noting that the particular risk in assisted dying services is that, as we heard in oral evidence from the chief medical officer, it is really hard to define, first, whether an illness is going to be terminal and, secondly, that somebody has only six months to live. There is an element of subjective judgment in assessing who is going to be eligible for assisted dying. Aligning subjective judgment to a profit incentive could create a serious ethical minefield.

I want to state absolutely clearly for the record that I am not questioning the ethics of doctors or the ethical standards of doctors or of any of the bodies that represent them in any way at all. My question is merely about introducing a profit incentive to this issue. As I said, this process could be contrasted with something like the provision of abortion services. Abortion services are clearly available only to pregnant women. The fact that the qualification, as it were, for this service is on a rather more subjective basis creates a risk.

Without this amendment, I am concerned that the Bill commodifies the end-of-life process and pushes what should be a sensitive, careful process towards being a transactional one. It also increases the risk that everything becomes focused on facilitating ending the patient’s life rather than supporting the holistic ethos of the NHS in addressing all the patient’s needs. Without the amendment, I worry that the Bill opens a door to the commodification of death, as the hon. Member for East Wiltshire has so graphically anticipated. What should be a careful, compassionate process could slide into something more transactional: a service that is marketed, packaged and sold.

We need look only to the parallel of care homes to see that danger writ large. In England, social care has been quietly overtaken by for-profit providers. Today, 75% of adult care homes, and over 80% of children’s homes, are run for profit—not by design or explicit policy, but by the slow creep of market forces. The Economics Observatory, drawing on studies such as Patwardhan et al. 2022, Barron and West 2017 and Bach-Mortensen et al. 2022, reveals a stark truth: for-profit care, particularly where private equity is involved, consistently delivers worse outcomes.

Similarly, a 2019 BMJ study found that private providers running NHS-funded services had higher rates of complications in procedures such as hip replacements compared with NHS trusts. The focus on cost efficiency can lead to skimping on follow-up care or using less experienced staff. Why does that happen? Profit-seeking behaviour drives cuts to staff, to resources and to time. Now, if we transpose that to assisted dying, let us imagine the pressures on a private provider to trim costs and the pressures on the quality of assessments. How thoroughly are mental health conditions, or the risk that something else might be going on, explored? How great is the depth of attention to medical records? Is what is relevant to the doctor influenced by the ticking clock? Will they tick a box rather than a safeguard?

[Kim Leadbeater (Spen Valley) (Lab)]

The hon. Lady said that she is not questioning the ethical judgment and practice of doctors, but the comments she is making suggest otherwise.

[Sarah Olney]

Again, I am talking about the companies that are running the service. I am not questioning the ethics of the doctors involved. I am merely suggesting that the people who are commissioning the doctors to carry out the service will have their own priorities that are not directly related to the safety or welfare of patients.

--- Later in debate ---

[Sarah Olney]

We do not have the model to scrutinise, and we do not know within that whether the first or second co-ordinating doctor will be paid for their services in carrying out those initial assessments. To say that there is no incentive for making the final decision ignores the fact that people might be incentivised for making those initial decisions, where the professional judgment is required and may differ between doctors. That is why there is a risk.

[Kim Leadbeater]

Clause 40(4) is very clear that medical practitioners can receive only “reasonable remuneration” for the provision of services, so it is clear that they cannot make money from the provision of assisted dying. Is the hon. Lady saying that where there is a private provider or one commissioned by the NHS—the model that I have set out in the Bill—there is a financial incentive for doctors to do more hip or knee operations, or other things? That is a question about the model of public and private healthcare as it stands, not about assisted dying.

[Sarah Olney]

On the hon. Member’s comment about clause 40, “reasonable” is a fairly elastic term. We will find in time that the word “reasonable” will come to have its own accepted definition, but it does not preclude a profit margin.

[Kim Leadbeater]

I would argue that it does.

[Sarah Olney]

But the Bill does not say that. It does not say that the payment to the doctor should not include any consideration of profit. Regarding hip operations, someone would have one only if they needed it. My point is that assisted dying is one of a range of options at the end of life being presented here. The concern is that people motivated by profit would be incentivised to push for assisted dying at the expense of other options for the patient that do not attract the same level of reward. That is the issue. It is not a binary decision in the way that most treatments are.

Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting)

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Kim Leadbeater]

As has been alluded to by various Committee members, I fully support the intention behind amendment 273, but I think it will be covered already. I have mentioned my amendment 500, but amendment 455 is probably more pertinent. It looks at the annual report that the assisted dying commissioner would produce, which makes reference to protected characteristics, and sets out that any other such data can and should be collected under regulations.

I am therefore confident that that report would encompass the points made by amendment 273, and that reference is made to the analysis that is covered by amendment 274. I feel confident that the intention will be met by the introduction of the voluntary assisted dying commissioner, but I wholeheartedly agree that data collection is a fundamentally important part of the process.

[Sarah Olney]

I want to make a couple of further points in response to some of the those raised by Members. First, I have looked at amendment 500, which the hon. Member for Spen Valley directed me to, and I thank the hon. Member for Reigate for showing it to me—her record keeping is much better than mine. I was going to say that amendment 500 does not cover a lot of the areas that I have raised, but the hon. Member for Spen Valley has just referred me to amendment 455.

However, it is important to say that amendment 455 refers only to “protected characteristics” under the Equality Act 2010. I specified particular characteristics in amendment 273 in response to some of the evidence that we received. In particular, I included the person’s age in response to evidence that we received from Together for Short Lives, which represents children’s hospices including Shooting Star in Richmond. It had specific concerns about the issue of assisted death being raised with young people under 18, and that is why I specified that. I also included gender and ethnicity, which I mentioned earlier, and that came through very strongly in a lot of the oral evidence that we received.

To address the point made by the hon. Member for Sunderland Central, I did not hear sexuality being raised as a risk factor at any point. Obviously, members of the LGBTQ+ community experience a great deal of discrimination, but I have not heard it raised as a specific risk factor for assisted dying, which is why it is not on the list. I have included the person’s postcode because I do not know a better way of assessing whether someone is from a low-income background. I particularly draw the attention of hon. Member for Spen Valley to that characteristic, because it is obviously not protected under the Equality Act, so I remain really concerned.

Terminally Ill Adults (End of Life) Bill (Twenty-fourth sitting)

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Kim Leadbeater (Spen Valley) (Lab)]

It is a pleasure to serve under you this morning, Ms McVey. My amendments 374 and 471 serve to clarify that the second declaration must be made before it is witnessed—it is a drafting amendment—and to bring clause 13 in line with the reporting requirements elsewhere in the Bill. For the functions of the commissioner to be carried out effectively, including supervising the assisted dying panels and making annual reports on the legislation’s operation, it is essential that all relevant details and reports are made available.

I am unable to support amendment 457, in the name of the hon. Member for Richmond Park. As I said when we started discussing the amendment, I do not fully understand why it has been positioned at this stage in the process. The shorter period of reflection is a recognition that a person’s death is expected within a month, so they literally have a few weeks left of life.

[Sarah Olney (Richmond Park) (LD)]

That was the hon. Member’s response when I made my speech on the amendment in the previous sitting. I have reflected on that over the weekend. I still think that the issue of the voluntary stopping of eating and drinking is a very serious one that ought to be reflected somewhere in the legislation, but she is correct that, at this particular point, we are talking about the second period of reflection already being at an end, so it cannot be hastened in any way by such a measure. Therefore, I will be withdrawing the amendment.

[Kim Leadbeater]

I appreciate that; that is helpful and I thank the hon. Member. As the Minister said, a person whose death is approaching may have stopped eating and drinking for a number of reasons. They may simply be too ill. They may be unable to digest food. It may be that they have lost their appetite, or that they will be even more ill if they eat and drink, so it would seem particularly cruel to intervene on that basis at that point, but I appreciate her comments.

Amendment 316 in the name of my hon. Friend the Member for York Central seeks to mandate the action a doctor must take if a patient is likely to die within one month. Like other amendments, it goes against the basic principles that underlie the Bill—that the wishes of the person seeking assistance should be respected. Surely that is even more important than ever as they face their final weeks. As the right hon. Member for North West Hampshire said, palliative care will have been discussed at length throughout the assisted dying process. It is also worth noting, as the hon. Member for East Wiltshire said, that evidence from other jurisdictions with similar laws—Australia and America—shows that between 80% and 90% of people who have gone through the assisted dying process are already receiving palliative care, so I am not minded to support the amendment.

[Sarah Olney]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendments made: 207, in clause 13, page 9, line 20, leave out “Schedule 4” and insert

“regulations made by the Secretary of State”.

This amendment provides that the form of a second declaration is to be set out in regulations (rather than in Schedule 4).

Amendment 470, in clause 13, page 9, line 26, at end insert—

“(3A) Regulations under subsection (3)(a) must provide that a second declaration contains—

(a) the following information—

(i) the person’s full name and address;

(ii) the person’s NHS number;

(iii) contact details for the person’s GP practice;

(iv) specified information about the certificate of eligibility;

(b) the following further declarations by the person—

(i) a declaration that they have made a first declaration and have not cancelled it;

(ii) a declaration that they understand that they must make a second declaration in order for assistance to be provided under this Act;

(iii) a declaration that they are making the second declaration voluntarily and have not been coerced or pressured by any other person into making it;

(iv) a declaration that they understand that they may cancel the second declaration at any time.

In this subsection “specified” means specified in the regulations.”

This amendment provides that regulations about the form of a second declaration must make the provision mentioned in paragraphs (a) and (b).

Amendment 471, in clause 13, page 9, line 27, leave out from “if” to “that” in line 28 and insert

“the coordinating doctor is satisfied (immediately before witnessing it)”.

This amendment removes wording which would suggest that a second declaration is made before it is witnessed.

Amendment 208, in clause 13, page 9, line 38, leave out “Schedule 5” and insert

“regulations made by the Secretary of State”.

This amendment provides that the form of a statement by the coordinating doctor following the making of the second declaration is to be set out in regulations (rather than in Schedule 5).

Amendment 472, in clause 13, page 9, line 41, at end insert—

“(6A) Regulations under subsection (6)(a) must provide that a statement under subsection (5) contains—

(a) the following information—

(i) the person’s full name and address;

(ii) the person’s NHS number;

(iii) the coordinating doctor’s full name and work address;

(iv) specified information about the certificate of eligibility;

(b) the following declarations by the coordinating doctor (in addition to a declaration that they are satisfied of all of the matters mentioned in subsection (4)(a) to (d))—

(i) a declaration that they are satisfied that a certificate of eligibility has been granted in respect of the person;

(ii) a declaration that the second declaration was made after the end of the second period for reflection;

(iii) if the second declaration was made before the end of the period mentioned in subsection (2)(a), a declaration that they have the belief mentioned in subsection (2)(b);

(iv) a declaration that they are satisfied that neither the first declaration nor the second declaration has been cancelled.

In this subsection “specified” means specified in the regulations.”

This amendment provides that regulations about the form of a statement under subsection (5) must make the provision mentioned in paragraphs (a) and (b).

Amendment 374, in clause 13, page 10, line 2, at end insert—

“(8) Where the coordinating doctor has—

(a) witnessed a second declaration, or

(b) made or refused to make a statement under subsection (5),

the doctor must notify the Commissioner and give them a copy of the second declaration or (as the case may be) any statement under subsection (5).”—(Kim Leadbeater.)

This amendment requires the coordinating doctor to notify the Commissioner of witnessing a second declaration, and of having made or refused to make a statement under clause 13(5).

Clause 13, as amended, ordered to stand part of the Bill.

Clause 14

Cancellation of declarations

[Kim Leadbeater]

I beg to move amendment 375, in clause 14, page 10, line 9, at end insert—

“(1A) Where notice or an indication is given to the coordinating doctor under subsection (1)(a), the doctor must as soon as practicable notify the Commissioner of the cancellation.”

This amendment requires the coordinating doctor to notify the Commissioner of a cancellation of a first or second declaration.

Terminally Ill Adults (End of Life) Bill (Twenty-third sitting)

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Sarah Olney]

It is a pleasure to serve under your chairmanship, Sir Roger. I have tabled the amendment to exclude the possibility that somebody could render themselves, if that is the appropriate language, terminally ill by the mechanism of voluntarily stopping eating and drinking.

The Bill before us is based on the principle that assisted suicide should be limited to those who are already dying—those with a terminal illness and a prognosis of six months or less—but there is growing evidence that that safeguard could be undermined by a practice known as voluntary stopping of eating and drinking, or VSED. That is when a person with mental capacity deliberately chooses to stop eating and drinking with the intention of hastening death. VSED is sometimes framed as an exercise of choice at the end of life, but in jurisdictions where assisted suicide is legal, it is increasingly being used as a means to an end—a way for individuals who do not meet the legal definition of terminal illness to qualify for lethal drugs.

The logic is simple: a person has the right to refuse food and water, and if they do so, their health deteriorates and they may die within six months. Some doctors have accepted this as grounds to certify a patient as terminally ill—not because their underlying condition would have led to imminent death, but because of the self-imposed effects of dehydration and malnutrition. The strategy has become viable only because many jurisdictions have shortened or removed waiting periods for assisted suicide. The loophole works only if the time it takes to obtain lethal drugs is shorter than the time it takes to die from refusal of food and water. Under the Bill, the same loophole exists.

Clause 13(2)(b) states that if a doctor

“reasonably believes that the person’s death is likely to occur”

within one month, the standard 14-day waiting period can be reduced to just 48 hours. If a person stops eating and drinking, their death will almost certainly be likely within one month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. Proponents of assisted suicide have been explicit: this is not simply a theoretical possibility—it is a co-ordinated strategy.

[Kim Leadbeater]

I might be missing something—it has been a long day—but, presumably, by the time the patient has got to that point, they have been through the eligibility criteria with the two doctors. The hon. Lady said that they would not be terminally ill, but they would have been through all the assessment criteria at this point.

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

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Kim Leadbeater]

I will speak briefly about amendment 461. A co-ordinating doctor is central to the whole process set out in the Bill, from start to finish. If a co-ordinating doctor becomes unavailable, a replacement would need to be found. There may be a number of reasons, not restricted to the doctor’s own death or illness, why that could happen. We have already heard a few examples—it could be retirement, maternity leave or anything going on in that doctor’s personal life. A close family member might fall ill or die, or something else might happen in the doctor’s life that forces them to withdraw. We have talked a lot about patient autonomy, quite rightly, but we need to think about the autonomy of the doctors involved in the process as well. It is therefore important that they have the ability to step away, as set out in clause 11. Additionally, I associate myself with the Minister’s comments about amendments 309 and 310. It feels as though those amendments do not necessarily do what was intended.

[Sarah Olney]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 206, in clause 11, page 7, line 24, leave out subsection (3).—(Kim Leadbeater.)

See the statement for Amendment 188.

Clause 11, as amended, ordered to stand part of the Bill.

--- Later in debate ---

[Sarah Olney]

I will speak briefly about an important point that the hon. Member for Spen Valley made. I want to get it on the record that I disagreed with something that she said. We heard a lot in the evidence sessions about the desirability of a multidisciplinary approach or a multi-professional team, and I listened particularly carefully to Dr Sarah Cox, who gave oral evidence to the Committee on 28 January on behalf of the Association for Palliative Medicine of Great Britain and Ireland. She made important and interesting points regarding the desirability of the involvement of multidisciplinary teams in relation to her area of expertise: palliative care.

I am anxious that the panel that the hon. Member for Spen Valley is now proposing is being presented as a response to the comments of Dr Sarah Cox in relation to multi-professional teams, when it is clear that she meant something quite different. My interpretation of what she said was that the initial assessment should be done by a multi-professional team; what is being proposed here is something that happens much later in the process.

[Kim Leadbeater]

To be clear, the point I have tried to make with regard to the evidence that we received was just that there is a need for a multidisciplinary approach, wherever it happens.

[Sarah Olney]

I am glad to have had that clarification; however, it is really important to reflect on the fact that Dr Sarah Cox said that it would be considerably preferable to have the input of a multidisciplinary team at the earliest possible stage. That is not what is being proposed with these new clauses.

[Kim Leadbeater]

The point is that it has to happen at every stage, and I think the evidence that we heard was that it does happen. I know from the experiences of family and friends of mine who have had cancer that it does happen. There is a multidisciplinary approach; there is an oncologist, a nursing team and a doctor. That does happen, and nothing in the Bill will take away from that.

[Sarah Olney]

I thank the hon. Member, but I think she is responding to a slightly different point from the one that I made.

There was further written evidence from Dr Doré, the honorary secretary of the Association for Palliative Medicine, on 25 February. He wrote:

“To clarify any misunderstanding, the current Bill does not align with the standard multi-professional team…decision-making process used across the health service.

Under the Bill, patient assessments are conducted solely by two doctors without input from a wider MPT. While an amendment proposes the involvement of a panel—including a social worker and psychiatrist—this panel is introduced only at the end of the process and does not participate in the patient’s direct assessment.

We wish to make it clear that the point that Dr Cox was making in oral evidence was that having two independent doctors, working alone, is not an adequate model to safeguard either patients or professionals, and that stipulating that the initial assessments must be carried within a multi-professional team model would strengthen the Bill.”

--- Later in debate ---

[Kim Leadbeater]

Does the hon. Member not agree that by accepting amendment 6, tabled by the hon. Member for St Albans, we have early intervention with psychiatric analysis at a very early stage, when either of the doctors feels it is necessary?

[Sarah Olney]

I am grateful for amendment 6 and to my hon. Friend the Member for St Albans for tabling it. I put on record, however, that I do not think that the panel that we are discussing addresses my earlier concerns. I wanted to make that absolutely clear by highlighting the further evidence from the Association for Palliative Medicine. The panel proposed by this group of amendments does not address its concerns, or the concerns of many other people who were saying that there needs to be a multi-professional team.

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

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Sarah Olney]

Although this is not specified in any of the amendments—which are in the name of my good friend, my hon. Friend the Member for Bath (Wera Hobhouse) —they are very much informed by the work she has done over a number of years as the chair of the eating disorders all-party parliamentary group. This is a subject about which she has a great deal of knowledge, and that is what has prompted this group of amendments, which follow on from the debate we had just before the break.

It is important to remember that although amendment 6 —in the name of another good friend, my hon. Friend the Member for St Albans (Daisy Cooper)—talked specifically about people’s capacity, this group of amendments very much returns to a topic I have spoken on at length in previous sittings: how a person’s capacity to request an assisted death might well be impacted if they are suffering from mental health difficulties.

Amendment 363 would require a mental health assessment if there is any indication that a person’s judgment may be impaired by a mental disorder or other conditions. We have debated this topic at length—[Interruption.] I see the right hon. Member for North West Hampshire nodding, but it is worth returning to the issue, because a principal concern of mine is that we have not yet dealt adequately with this risk in the Bill. We have talked about how the Mental Capacity Act might be applied and about psychosocial interventions, but I am keen to see amendment 363 agreed to, because it would deal with many of the objections raised in those other debates. It is an important safeguard that still needs to be included in the Bill.

The Bill has been described as having the strongest safeguards in the world, but it lacks this critical safeguard, which is seen in many similar laws around the world, including Oregon and California, which require that in addition to establishing mental capacity, doctors must ensure that a person’s judgment is not impaired by mental illness. In fact, in the American state of Hawaii, every patient who requests an assisted death is required to see a mental health professional, who can determine whether the patient is capable and appears not to be suffering from under-treatment or non-treatment of depression or other conditions that may interfere with their ability to make an informed decision.

It is provided for specifically and clearly in the legislation that governs assisted dying in other jurisdictions that assessments of the state of people’s mental health—and not just their capacity—must be made properly. The absence of any such safeguard in the Bill represents a clear risk. We know that mental health conditions can impair decision making and lead to suicidal ideation, particularly when a person lacks adequate social support. Without this provision, individuals experiencing a treatable mental health crisis may be given life-ending medication instead of the care and treatment that could alleviate their suffering.

Professor Allan House made the importance of that clear in his written evidence. He wrote:

“Simply checking mental capacity and asking about coercion is not adequate.”

He emphasised that National Institute for Health and Care Excellence guidelines in other areas already require a comprehensive psychosocial assessment that explores

“thoughts about life not being worth living”

and considers

“current and recent personal and social circumstances, recent adversities, psychological state beyond merely assessing mental capacity and the presence of severe mental illness.”

Professor Louis Appleby, the Government’s adviser on suicide prevention—I have referenced him on many occasions in previous sittings—has also raised concerns that the Bill could undermine suicide prevention efforts. Speaking to The Guardian, he said:

“You have a number of potentially remediable risk factors like isolation, for example. Do something about isolation. Depression, treat depression. It should be the offer of supporting people through the remediable elements of a sense of despair.”

That highlights why a safeguard is necessary to ensure that individuals receive proper assessment and treatment, if needed, before making an irreversible decision. If a person qualifies for assisted dying but is also experiencing impaired judgment due to a psychiatric condition, how can we be confident that their decision is truly autonomous?

Amendment 363 would require the co-ordinating doctor to assess whether a person’s request for assisted dying is influenced by a mental health condition. If there is any concern that impaired judgment due to a mental disorder is a factor, the doctor must refer the individual for a psychiatric assessment. The amendment would explicitly protect individuals with mental health disorders, including eating disorders, from accessing assisted dying when their desire to die is a symptom of their illness rather than a rational decision deriving from a terminal illness.

Do not ask me how I know this, but eating disorders really scramble a person’s brain. They leave them entirely incapable of making any kind of rational decision. The lack of nutrition really affects the brain: it has a physical impact that means the brain simply cannot function as it is supposed to. That is a direct cause of a person not ingesting the nutrients they need. When that happens to somebody, their behaviour completely changes: they become anxious, fearful, irrational and aggressive. It is not just that they believe their life is not worth living; the entire span of their life has shrunk down entirely to the question of how they can avoid eating. What is the next meal? What is the next stage in their life when someone is going to try to get them to eat, and how can they avoid that? What tactics can they employ?

When a person is in the grip of that kind of eating disorder, if someone comes along and offers them the possibility of an assisted death, there is every chance that they will choose that as a way of avoiding eating. As I say, do not ask me how I know this, but I have seen it, and for me it is beyond comprehension that we could possibly allow young people, and young women in particular, to put themselves in the position where they are being offered an assisted death and no one is taking those extra steps to treat their eating disorders—and eating disorders are always treatable. That is why I want to press the amendment.

[Kim Leadbeater]

The hon. Lady is making a powerful speech, and I understand that the amendments come from a very good place, and a very strong and experienced one, but she just made the point that eating disorders are treatable. That is the whole point: they would not fall under the criteria in the Bill.

[Sarah Olney]

That is why we need to ensure that people with eating disorders get the treatment they need, instead of being offered an assisted death. That is why we need the amendment.

[Kim Leadbeater]

rose—

[Sarah Olney]

Let me just reply to the hon. Member’s original point. It is so important—and this is why we need the amendment in the Bill—that if there is any doubt at all that someone is suffering from a treatable mental health condition, they are not allowed to proceed with their request for an assisted death until all avenues of treatment for that condition have been explored. Eating disorders are treatable: people can recover and can, in the fullness of time, recover their zest for life. They can move beyond the stage where their decision whether to eat or not is their entire world. They can rediscover their friends, their employment and their education, and they can look forward to a full life again. But it is imperative that while they are in the grip of that eating disorder, they are not offered the option of an assisted death.

[Kim Leadbeater]

I agree with every word the hon. Lady said, and—possibly like her—I have experience of working with people with eating disorders. However, clause 2 defines terminal illness as “an inevitably progressive” illness or disease

“which cannot be reversed by treatment”.

Eating disorders can be reversed by treatment, and therefore I am not willing to support the amendment.

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

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Kim Leadbeater]

Clause 1 is very specifically about the Mental Capacity Act, on which we should get a chance to vote this afternoon. Other amendments can be tabled ahead of Report, but the fitness for purpose of the Mental Capacity Act is a concept on which we will get a chance to vote this afternoon. Other things can be added to the Bill that would enhance other aspects, but the point that we have discussed this afternoon is about the fitness for purpose of the Act. There are different views on the Committee, which is understandable. I believe that using the well-established legal framework of the Mental Capacity Act, introducing gold-standard training and consulting experts in assessing capacity will mean that there is no need to develop a whole new framework around the concept of ability, particularly on the points made by my hon. Friend the Member for Penistone and Stocksbridge. I therefore do not support the amendments.

[Sarah Olney]

The hon. Member for Solihull West and Shirley used an arresting phrase this morning: he said that to abandon the Mental Capacity Act would take us “into tiger country”. The concept appeals greatly to me, but what I would say to him and other Committee members is that it is the Bill itself that takes us into tiger country. It is unprecedented, and this is very new territory for legislation in this country. That is the tiger country, right there. If we are going to let those tigers out into the wild, we need to ensure that the British public, and particularly the most vulnerable members of it, have the right protections. That is what the amendment seeks.

There was not a consensus among those who gave oral or written evidence that the Mental Capacity Act is a sufficient safeguard for the purpose proposed in the Bill. I am grateful to the hon. Member for Bexleyheath and Crayford for his speech this morning, which illustrated vividly for all of us how the Mental Capacity Act is used in practice. I particularly thank him for his personal reflection.

Let me reiterate what the amendment seeks. The Bill proposes to judge mental capacity for a decision to request assisted dying in relation to the Mental Capacity Act 2005. There are elements of the Mental Capacity Act that are tried and tested, and should be retained in assessments of capacity in relation to this legislation, but as per the written evidence of the Royal College of Psychiatrists, the Mental Capacity Act is not sufficient for the purposes of assisted dying, because it cannot distinguish between those who suffer from a mental disorder and those who do not. It needs to be adapted for the purposes of the Bill.

My amendment 34 would therefore substitute “capacity” with “ability” and reserve to the Secretary of State the power to define ability for the purposes of the Bill. To me, that is a pragmatic response. The debate in the Committee Room today reflects the lack of consensus among the experts who gave witness. That is why I think the matter is better resolved by those experts giving advice to the Secretary of the State, so the definition of ability can be expertly decided on.

The difference between choosing assisting dying and choosing to end treatment was a big topic of debate both this morning and this afternoon. It goes to the heart of the different approaches that people take towards the Bill. I support the observation from the hon. Member for East Wiltshire that the difference is between dying of an illness itself, or dying of the effects of the approved substance, as laid out in the Bill. To me, that is a substantial and material difference, so our approach to establishing capacity should reflect that.

The hon. Member for Reigate made an important point about the difference between a passive and an active choice. That very much reflects what I am trying to achieve through the amendment, which would allow us to strengthen the safeguards around the assessment of capacity. Given that there was not a consensus, among the experts who gave evidence, on whether the Mental Capacity Act is sufficient for the purpose, the pragmatic step is to allow the amendment to create the conditions under which a stronger safeguard can be adopted if necessary.

Question put, That the amendment be made.

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

Debate between Sarah Olney and Kim Leadbeater

Tuesday 11th February 2025 Public Bill Committees

[Kim Leadbeater]

Clause 1 is very specifically about the Mental Capacity Act, on which we should get a chance to vote this afternoon. Other amendments can be tabled ahead of Report, but the fitness for purpose of the Mental Capacity Act is a concept on which we will get a chance to vote this afternoon. Other things can be added to the Bill that would enhance other aspects, but the point that we have discussed this afternoon is about the fitness for purpose of the Act. There are different views on the Committee, which is understandable. I believe that using the well-established legal framework of the Mental Capacity Act, introducing gold-standard training and consulting experts in assessing capacity will mean that there is no need to develop a whole new framework around the concept of ability, particularly on the points made by my hon. Friend the Member for Penistone and Stocksbridge. I therefore do not support the amendments.

[Sarah Olney]

The hon. Member for Solihull West and Shirley used an arresting phrase this morning: he said that to abandon the Mental Capacity Act would take us “into tiger country”. The concept appeals greatly to me, but what I would say to him and other Committee members is that it is the Bill itself that takes us into tiger country. It is unprecedented, and this is very new territory for legislation in this country. That is the tiger country, right there. If we are going to let those tigers out into the wild, we need to ensure that the British public, and particularly the most vulnerable members of it, have the right protections. That is what the amendment seeks.

There was not a consensus among those who gave oral or written evidence that the Mental Capacity Act is a sufficient safeguard for the purpose proposed in the Bill. I am grateful to the hon. Member for Bexleyheath and Crayford for his speech this morning, which illustrated vividly for all of us how the Mental Capacity Act is used in practice. I particularly thank him for his personal reflection.

Let me reiterate what the amendment seeks. The Bill proposes to judge mental capacity for a decision to request assisted dying in relation to the Mental Capacity Act 2005. There are elements of the Mental Capacity Act that are tried and tested, and should be retained in assessments of capacity in relation to this legislation, but as per the written evidence of the Royal College of Psychiatrists, the Mental Capacity Act is not sufficient for the purposes of assisted dying, because it cannot distinguish between those who suffer from a mental disorder and those who do not. It needs to be adapted for the purposes of the Bill.

My amendment 34 would therefore substitute “capacity” with “ability” and reserve to the Secretary of State the power to define ability for the purposes of the Bill. To me, that is a pragmatic response. The debate in the Committee Room today reflects the lack of consensus among the experts who gave witness. That is why I think the matter is better resolved by those experts giving advice to the Secretary of the State, so the definition of ability can be expertly decided on.

The difference between choosing assisting dying and choosing to end treatment was a big topic of debate both this morning and this afternoon. It goes to the heart of the different approaches that people take towards the Bill. I support the observation from the hon. Member for East Wiltshire that the difference is between dying of an illness itself, or dying of the effects of the approved substance, as laid out in the Bill. To me, that is a substantial and material difference, so our approach to establishing capacity should reflect that.

The hon. Member for Reigate made an important point about the difference between a passive and an active choice. That very much reflects what I am trying to achieve through the amendment, which would allow us to strengthen the safeguards around the assessment of capacity. Given that there was not a consensus, among the experts who gave evidence, on whether the Mental Capacity Act is sufficient for the purpose, the pragmatic step is to allow the amendment to create the conditions under which a stronger safeguard can be adopted if necessary.

Question put, That the amendment be made.

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

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Sarah Olney]

Yes, that is exactly what I am aiming to do. The hon. Member makes an excellent point. There is a wide variety of views on this, but in actual fact, much as I do not wish to question Professor Sir Chris Whitty, and I acknowledge his seniority as the chief medical officer, he was very much the outlier on this. Everybody else who gave evidence on the sufficiency of the Mental Capacity Act to determine someone’s capability to make this decision for themselves cast doubt on the idea that the Mental Capacity Act was the right way of doing it.

[Kim Leadbeater]

That is not quite accurate. I think we did have other witnesses who absolutely said that they had confidence in the Mental Capacity Act, and I will speak about them in this debate.

[Sarah Olney]

I look forward to the hon. Lady’s further comments, but as I said, the psychiatrists were very clear that they did not believe that this was a sufficient safeguard, and we should acknowledge that.

I was unable to put my question to Alex Ruck Keene KC during the oral evidence session, but he kindly agreed to give further evidence in writing in response to a letter I sent to him later that day. That exchange of letters has been published as written evidence. It was his position that, in actual fact, Professor Sir Chris Whitty misinterpreted the Mental Capacity Act when he gave evidence. There is no such requirement in the Mental Capacity Act that states that the more serious the decision, the greater the level of capacity that someone needs to have. Mr Ruck Keene’s view is that that was the common law prior to the Mental Capacity Act coming into force, whereas in actual fact the Mental Capacity Act does not require that the more serious the decision, the more capacity someone needs to be judged to have.

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

Debate between Sarah Olney and Kim Leadbeater

Thursday 30th January 2025 Public Bill Committees

[Kim Leadbeater]

Thank you so much.

Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.

We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.

When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.

Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.

I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”

The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.

Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.

In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.

The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.

[Sarah Olney (Richmond Park) (LD)]

Q Thank you all for coming today and for sharing these really personal recollections. I have one question, but to both Liz and Julie, if that is okay. According to the notes that I have here—apologies if I have got this wrong—in both your brother’s situation and your husband’s situation, it was administered by the doctor. The Bill proposes that the person who has made the choice about ending their life should self-administer a solution. I am really sorry if this causes you any distress, but, on reflection, do you think that a self-administration regime would have made a difference?

Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.

Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.

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

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Kim Leadbeater]

Thank you so much.

Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.

We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.

When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.

Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.

I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”

The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.

Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.

In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.

The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.

[Sarah Olney (Richmond Park) (LD)]

Q Thank you all for coming today and for sharing these really personal recollections. I have one question, but to both Liz and Julie, if that is okay. According to the notes that I have here—apologies if I have got this wrong—in both your brother’s situation and your husband’s situation, it was administered by the doctor. The Bill proposes that the person who has made the choice about ending their life should self-administer a solution. I am really sorry if this causes you any distress, but, on reflection, do you think that a self-administration regime would have made a difference?

Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.

Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.

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

Debate between Sarah Olney and Kim Leadbeater

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sarah Olney]

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

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

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

[Kim Leadbeater (Spen Valley) (Lab)]

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

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

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

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

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

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

--- Later in debate ---

[Sarah Olney]

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

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

[Kim Leadbeater]

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

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