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

Sarah Olney Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Sean Woodcock]

I accept that it could work, but my view is that it is far less likely to work and that it is more likely to be successful if it is wholly the responsibility of public authorities.

I will vote in favour of amendment (d) to new clause 36. It would remove subsection (6), which says:

“Regulations under this section may make any provision that could be made by an Act of Parliament; but they may not amend this Act.”

It strikes me as dangerous to provide in the Bill for the Secretary of State to amend primary legislation, and we should vote to remove that power. It is surely a weakening of the Bill’s safeguards. Assisted dying must remain firmly in the control of the democratically elected Parliament. I urge Members to join me in voting to remove subsection (6).

If we fail to rule out the possibility of private provision and allow the Secretary of State the power to amend primary legislation, we will fail to implement the necessary safeguards. Amendments (c) and (d) to new clause 36 would go some way to addressing that, by ensuring that the state that sanctions assisted dying is also the body that provides it. Assisted dying services need strong reporting and accountability; otherwise, we risk inequality, or the abuse of assisted dying going unchecked. The provision of assisted dying through public authorities is essential to proper accountability, reporting and best practice, so I urge the Committee to support the amendments.

[Sarah Olney (Richmond Park) (LD)]

It is a pleasure to serve under your chairmanship, Ms McVey.

In Richmond Park, a Henry VIII power has traditionally meant the right of the monarch to hunt the deer in the large open space that gives my constituency its name—something that I am sorry to say he has in common with the dog of the hon. Member for East Wiltshire—

[Danny Kruger]

I didn’t know it was illegal. [Laughter.]

[Sarah Olney]

He paid a hefty fine, I think.

The efforts of Henry VIII’s descendants to try to enclose the park and maintain the powers for the exclusive benefit of the royal family were defeated by a popular and somewhat genteel uprising of the residents of Richmond. I stand here today as the Member for Richmond Park to do a similar job: to assert the rights of the House of Commons and the Houses of Parliament to determine what legislation is, and not to allow it to be delegated under Henry VIII powers.

The normal approach is that legislation made by Ministers is delegated legislation, and such legislation is therefore of subsidiary character to primary legislation. However, there is a type of power, known as a Henry VIII power, that gives Ministers the power to amend even primary legislation. The glossary on Parliament’s website says:

“The expression is a reference to King Henry VIII’s supposed preference for legislating directly by proclamation rather than through Parliament.”

We may in the course of time start to refer to them as President Trump powers—who knows?—but that is the precedent we act on.

The Hansard Society, a non-partisan organisation that is neutral on assisted dying, issued a report that was critical of the power in the Bill. It said this:

“little can be deduced about how it is thought this power will be used in practice, beyond the fact that it may, in particular, be used to enable the provision of assisted deaths through the National Health Service.

But as the DPRRC”—

the Delegated Powers and Regulatory Reform Committee—

“has previously stated, where a power provides that delegated legislation may ‘in particular’ include a specified matter, it implies the legislation may deal with matters beyond that specified matter. The explanatory notes shed little more light, except to clarify that the power could be used to make arrangements for the funding of any provision made by the regulations. Could the regulations thus be used to enable the provision of assistance through the private sector on behalf of the health service in England and in Wales? If the intention is that the regulations will be used only to establish an assisted dying service, either within or separately to the NHS, would they require that the service be free at the point of access to the person requesting assistance?

A key principle that the House of Lords Constitution Committee has applied to delegated powers is that they ‘should not be framed in such a way that gives little indication of how they should be used.’ The DPRRC’s Guidance to Departments states that the Delegated Powers Memorandum should set out how it is proposed that a power should be exercised.

In the current absence of the DPM, MPs may therefore wish to seek clarification from the sponsor of the Bill, Kim Leadbeater, about how she envisages the power being used, and similarly from Ministers how they expect to use this power if it were granted to them.”

The drafter of the Bill, Dame Elizabeth Gardiner, appeared on the Hansard Society podcast and gave some further detail on this power and how it arose:

“In other areas, like, is it going to be delivered through the National Health Service or in some other way, indeed the regulation of any substances that might be involved, in the time available, we didn’t have time to go into all the detail of how those regimes work and to make the provision on the face of the Bill, and so there are regulation making powers there, which enable that provision to be set out in detail, as you say, when the Government has looked at it and decided how it would implement it.”

Given the time available and the constraints of the private Member’s Bill process, the hon. Member for Spen Valley can be forgiven for not including the detail of how assisted dying will be provided on the NHS in the Bill on its introduction, but she and the Government have now had months to think about it. Many people had hoped that clause 32 would be replaced with detailed arrangements for the delivery of the service, to be put on the face of the Bill by way of an amendment, which the Committee could properly scrutinise.

On 5 March, the hon. Member for Spen Valley repeatedly said that it would be made clear by clause 32. When the hon. Member for East Wiltshire called for clarity in the Bill as to how the service would be delivered, the hon. Member for Spen Valley said: “It will be.” The Minister said:

“Officials are working on amendments to later clauses to establish the operating model for her consideration.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 5 March 2025; c. 802.]

This does not appear to have happened, which means Parliament will be limited to a 90-minute debate on this issue when the regulations are eventually made, and such a motion will be unamendable. Surely the issue of how the service is to be delivered is much more important than that and deserves greater scrutiny.

It is disappointing to see new clauses 36 and 37 as the replacement clauses. Ideally, instead of the new clauses we would have had a detailed set of amendments to specify exactly how assisted dying is to be delivered. We do not have that; instead, we have a Henry VIII power that provides even more power than the one in clause 32, because the new one includes a power to modify Acts of Parliament passed subsequent to this legislation.

New clause 36 provides very little guidance on how the Henry VIII power would be exercised. Will assisted dying be provided by the state? If so, would that be on the NHS or through another body? Subsection (1) one does not specify that it must be on the NHS. Subsection (4) gives the power, but not the duty, to change section 1 of the National Health Service Act 2006—a foundational piece of Labour legislation if there ever was one, as the hon. Member for Banbury said—but subsection (5) requires it to be free at the point of use.

The question of whether assisted dying should be provided as part of normal NHS services, or in a parallel service, as requested by both the BMA and the Royal College of General Practitioners, is not answered by new clause 36, although hopefully it can be fleshed out in the debate on the amendments in the name of the hon. Member for East Wiltshire. Alternatively, it would seem that the power can be used to commission private providers to deliver the service on behalf of the state. Instead of deciding between the various models, new clause 36 simply leaves it open. It therefore gives very little indication about how it should be used.

When giving the Gray’s Inn reading at Gresham College last year, Lord Falconer said:

“The wider the power—because there is less material in primary legislation to define how it should be exercised—the greater the reduction in parliamentary scrutiny, but also the harder”—

it would be—

“to identify any legal basis of challenge.”

He went as far as to suggest that such wide Henry VIII powers were “unconstitutional”. Given his great support for the Bill, it would be interesting to hear the response of the hon. Member for Spen Valley and the Minister to Lord Falconer’s remarks.

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[Daniel Francis (Bexleyheath and Crayford) (Lab)]

My hon. Friend the Member for Luton South and South Bedfordshire referred to IVF. My wife and I have been through IVF, and what exists is exactly what the hon. Member for Richmond Park described. There is an annual show at Olympia where it has been commercialised and it is put to people, “Why not go down this route? Why not go down that route?” Does the hon. Member agree that that is really not a route we want to go down?

[Sarah Olney]

I am grateful to the hon. Gentleman for that point, because it provides a comparison. We are talking about there potentially being a market for end-of-life services. I do not think that is the way we should be going.

[Dr Opher]

I thank the hon. Lady for her impassioned speech, but we are rather getting off the point. The division between private and NHS provision is spurious in a process that will be delivered by doctors who are working under a code of practice. They will be rewarded in their pay which, as we have said, will be stipulated by the BMA in contracted arrangements with the Government and will be proportionate. The doctors will do the work and get the money for that. That is no different from IVF or anything else. If we accept that the NHS will be the commissioning body and will ensure standards in that way—sorry, I am going on a bit, Ms McVey; I shall now finish—the division between an NHS provider and a private one is spurious.

[Sarah Olney]

The issue is who is commissioning the service. The issue is not the doctors or how they are recompensed for the work that they do, but who is doing the recompensing and what their incentives are. If the process is part of an NHS-provided service where it is agreed that it is a compassionate end of life choice, and where it is properly regulated within the wider NHS service and connects with other NHS services, that is one thing.

If the person commissioning that doctor has any kind of incentive around making a profit—and any profit-making organisation will be incentivised to increase the amount of profits that it makes—then, however carefully regulated, there will be subtle influence, pressure, coercion or persuasion that assisted dying is an option that patients should choose, or possibly not-so-subtle influence, to take the example from the hon. Member for Bexleyheath and Crayford. Under other circumstances, in an NHS model, that may not have been a solution they would have been persuaded to choose. It is that issue of persuasion and of incentives that really troubles me.

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

I am not clear: is the hon. Lady suggesting that doctors who operate in the private sector are less ethical than doctors who operate in the public sector?

[Sarah Olney]

I think I said very clearly to the hon. Member for Stroud that it is not about the doctors. It is about the people who are commissioning them. I absolutely do not believe that about doctors operating in the private sector, who in my experience are often the same doctors as the ones in the NHS. It is about who is commissioning them and who is asking them to carry out this work, and whether those commissioners are motivated by a profit incentive as opposed to the incentive in the NHS to provide the best possible care.

[Danny Kruger]

I entirely agree with the hon. Lady. We are all equally ethical and unethical—the point is that we respond to incentives, and incentives have their effect. Does she agree that there is a further concern? If we had a tariff system, which we probably would, that would by definition create a market, if there was the opportunity for private provision, to earn tariffs—to make more money the more assisted deaths one provides. Furthermore, to the point made by the hon. Member for Stroud that this is all perfectly fine and normal, what about the opportunity to top up the public provision—the tariff one gets from the NHS—with one’s own money, therefore definitely creating the opportunity for some sort of upmarket arrangement through the additional fees and services that might be provided? As the hon. Member for Bexleyheath and Crayford said, we could see expos dedicated to providing the most luxury or glamorous forms of assisted death through private providers with NHS funding.

[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]

It clearly remains to be seen, but that may be an outcome as we do not yet know what model we are proposing for the delivery of assisted dying. Perhaps doctors will feel pressured to deliver an outcome because that is how the model has been set up. If we have a model that incentivises profits, particularly if we do not have a similar service within the NHS itself, it is quite possible that that will happen. It will not necessarily affect the care that doctors give to patients at the end of life, but the point is that we do not know.

We cannot fully explore that matter in Committee, because we do not have the full clarity of exactly how the process will be delivered, so we cannot examine the proposed model and identify its potential risks and pitfalls. That continues to be a real concern. Perhaps doctors will feel that pressure; perhaps the service will be precisely designed to encourage them to, for example, diagnose someone with having fewer than six months to live even when it is a slightly more subjective judgment and a different doctor operating in a different system may come to a different view.

[Kit Malthouse]

That is an extraordinary claim to make against doctors.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I am just trying to wrap my head around the argument. We already know that integrated care boards and other commissioning bodies have incentives given to them when they commission services, so it would be in their interests to diagnose or produce a demand for a service in a particular area. There is already an analogous situation within the NHS; I do not see how that is any different.

[Sarah Olney]

I thank my hon. Friend for his intervention, but those incentives are not about creating profits that make money for individuals. They are about directing the way that resources are allocated to ensure that a broader range of health outcomes are achieved. When I talk about a profit incentive, it is an entirely different kind of incentive from the one he has just raised.

[Danny Kruger]

This is a very important debate, and my concern is that there is a naive assumption that the innate goodness of doctors will render them impervious to all the incentives in the system. As the hon. Lady suggests, if it were possible, as I think it is under the Bill, for a profit-making organisation—a company—to set itself up to provide an assisted suicide conveyer belt as a pathway through this process, and to earn money publicly or privately according to the volume of the provision it enables, we are setting up incentives that would corrupt the doctors who would be required to sign it off.

I regret that my right hon. Friend the Member for North West Hampshire has such an optimistic view of human nature that he thinks that no doctor would respond to the incentives in the way that is clearly enabled through the Bill. There are other medical professionals—ethical doctors—who do respond to incentives, such as those in the cosmetic surgery industry.

[Danny Kruger]

I would, but actually I am making an intervention. It may appear that I am making a speech, so I will soon sit down, but I would be interested in the hon. Gentleman’s response to the suggestion that even he —the paragon of virtue that he is—might not be entirely resistant to the economic incentives in the system. That is why we have an NHS that explicitly tries to exclude profit making from the provision of healthcare.

[Sarah Olney]

I thank the hon. Member for his intervention, but I do not associate myself with his use of the word “corrupt”; I am absolutely not implying that in any way, and I want to be very clear about that. However, there is a grave risk—even for the most ethical person, if they are offered money to carry out an action that they are inclined to carry out anyway as part of their professional practice—that those incentives drive behaviour that leads to worse outcomes for patients, specifically in relation to assisted dying.

[Dr Opher]

There may be an incentive to review a patient for assisted dying, but there is absolutely no incentive in the Bill to approve assisted dying. The idea that doctors would approve assisted dying for financial reasons is completely spurious.

[Sarah Olney]

As I say, we do not have a model before us that we can fully scrutinise or test for risks, and we will not have the opportunity to propose amendments to address those risks—nor will we at any stage. There is a serious risk about all the different parts of the system, not just the doctors, being incentivised by private profit. My amendment would comprehensively remove that, so it would not be a risk. Given that we cannot fully and properly scrutinise the proposed model, my amendment is the best we can do.

[Dr Opher]

I really want to point out that there is no incentive to agree to assisted dying, only to assess for it. There is no reason for people to be corrupted into agreeing, because it would not mean they would get any more money.

[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.

[Danny Kruger]

In response to the hon. Member for Spen Valley, the scenario that she mentions is exactly the problem in many healthcare systems around the world, particularly in America, where doctors are incentivised to deliver volumes of treatments and procedures that are often not strictly necessary. We do have a problem even in our own system with the over-prescription of certain medical treatments, particularly pharmaceuticals, so incentives do apply. Doctors are subject to them, and we do our best to regulate them out of the system. One of the great advantages of the NHS compared with other healthcare systems is that we manage to prevent the over-provision of services in response to economic incentives. That is a founding principle of the NHS that we are overriding with this process.

[Sarah Olney]

I will conclude my remarks by observing that the only reason that we are looking at contracting out assisted dying services to a private provider is that the country is simply not ready for assisted dying. We know how overstretched and under-resourced our NHS is, and we are looking at cutting corners in the Bill, in our policymaking, in our scrutiny of this legislation, and in how this legislation and the service is delivered.

[Naz Shah (Bradford West) (Lab)]

It is interesting to follow the hon. Member for Richmond Park, because I rise to speak to amendment 537, tabled by my hon. Friend the Member for Shipley. The amendment goes further than the hon. Member for Richmond Park would as far as local authorities are concerned.

The amendment also concerns both the national health service and the provision of healthcare by charities. My hon. Friend the Member for Shipley knows both fields extremely well. She was the director of quality and strategy and chief analyst at the Department of Health, and then had a senior role at the Centre for Ageing Better. Her amendment would mean that assisted dying services could be provided only by charitable organisations and not by the national health service.

I strongly support the general principle that if we do have assisted dying, it should be free at the point of use. If this House decides that people do indeed have the right to an assisted death under the conditions that this Bill sets out, then it should not be something limited to those who can afford private healthcare. There are, however, strong objections among general practitioners to providing assisted dying as part of their services, and I do not think we should plan to have private firms work under contract from the NHS to provide assisted dying either.

The Royal College of General Practitioners said in its written evidence that

“any assisted dying service should be seen as a standalone specialised service that healthcare professionals may opt to provide with additional training and should not be deemed core GP work.”

The royal college’s advice, which is founded on the views of its members, means that we should give very strong consideration to putting assisted dying outside the normal workings of the NHS. If we do that, it seems that there are a few options. One is for the Secretary of State to invite private firms to tender for contracts and administer assisted dying services. As I have said, there are very strong reasons why we should not plan to have private firms work under contract to the NHS to provide assisted dying; for me, that it is one of the worst possible options.

Another option is for the NHS to fund a specialised assisted dying service that would be separate from its other functions. That could potentially be feasible, but it could also represent a significant cost for the NHS, because we still have not had the impact assessment from the Government and we have no idea how significant that cost may be.

There is also the worry that if assisted dying becomes available on the NHS, some people will become too frightened to access palliative care, as was outlined to the Committee by Dr Jamilla Hussain. I will read a brief part of her written evidence to the Committee. After talking to the patients in ethnic minority and other disadvantaged groups, she said:

“Overwhelmingly, racialised communities expressed deep concerns that they would be more likely to be pushed towards AD through systemic biases and societal attitudes about whose lives are valued… While safeguards were acknowledged, many remained sceptical that they would be applied fairly and equitably, fearing that vulnerable individuals, particularly those who lack strong advocates or English proficiency, might be at greater risk of being guided towards AD rather than offered appropriate care options.”

I want to share something with the Committee. We often get taxis to and from work and home; I got into a cab yesterday, and the chap who was driving was called Dave. His 84-year-old aunt died on Friday. When we were discussing this option, he told me really clearly that she has opted for a cremation, which would cost less money, just because she internalised that idea of burden and she did not want a cost for those that she left behind. She had not seen a doctor for 40 years. That brought home the idea of internalised coercion, internalised pressure and mistrust, because he also talked about what happened during covid. We had an interesting conversation. I told him that it was interesting that he had said that, and today I am talking about it. That is the reality: it is about how people perceive healthcare provision, the potential inequalities, and what the barriers are to access—all the preconceived ideas that we have about the provision of healthcare.

That brings me to a potential third way, which is what amendment 537 is about: charities. Charities are one way of addressing the concerns I and the hon. Member for Richmond Park have outlined about the risk with private companies and the risk of loss of confidence and access to the NHS, as well as the concerns outlined by the Royal College of General Practitioners. They could well be mitigated by ensuring that the lead responsibility for administering assisted dying is given to charities rather than the NHS.

--- Later in debate ---

[Lewis Atkinson]

I hope to help the hon. Gentleman with the points I am about to make.

What I would say to begin with is that we have talked throughout this Committee about using an opt-in model. There is this idea that everyone will be doing this, but we have rightly set out requirements for specialised training and so on. There will clearly be individual doctors in the NHS, and so on, who decide that they want to provide these services, and specialisms and appropriate regulation will accordingly be developed as part of that.

The other thing I would highlight is that the current drafting explicitly requires a range of provision. The second doctor must be independent. Indeed, clause 8(6)(d) requires that they must not be

“a partner or colleague in the same practice or clinical team as the coordinating doctor”,

so although some are suggesting, perhaps in a positive sense, that there should be one, entirely separate organisation that does all this, that would not meet those requirements. There are those who are trying to instil a fear of one large organisation being set up to take someone from start to finish, but that is not possible under the Bill as drafted.

[Sarah Olney]

I am reflecting on the earlier intervention on me by the hon. Member for Stroud about how the only payment under assisted dying would be made at the very end, so therefore there would no possibility of a doctor making an assessment at an earlier stage in the process being influenced. Now the hon. Member for Sunderland Central is saying—this is obviously implied by the drafting—that the different bits of the approval process would need to be delivered separately. Whether that involved a payment from the NHS or a private provider, the doctor making those assessments will clearly be paid at different stages in the process.

Does the hon. Gentleman agree that this points to the fundamental problem we have in this Committee, which is that we do not have a proposed model that we can properly scrutinise? All of us are just talking about potential suppositions about how things might work. We are effectively talking about a range of straw men.

[Lewis Atkinson]

No, I do not agree with the hon. Member, and I will tell her why. The reality is that the shape of the health provider landscape is different in different parts of the country. For example, in Wolverhampton, there has been a significant amount of vertical integration, such that in many cases GP services are part of the NHS provider trust. Therefore, those amendments that would prohibit any public body from participating would explicitly prohibit GPs in Wolverhampton from that provision. Elsewhere, some hospices—a small number—are provided directly by the NHS. Given the history of the hospice sector in the UK, there is clearly a strong voluntary and charitable element of that provision, which is entirely right, but that varies in different parts of the country.

To return to the point made by the hon. Member for East Wiltshire, there are some hospices and end-of-life providers who have made it known that, if this law passes, they may wish to explore whether they will provide such services. Equally, others will not. This goes back to the conscience debate that we had last week. There will be no obligation, so a hospice in one part of the country may well say, “Yes, we wish to provide this service as an option to our patients,” whereas a hospice in another part of the country might say, “We do not.” We need to get past this metropolitan mindset, whereby ll the providers are within easy travelling distance from each other.

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[Lewis Atkinson]

The hon. Gentleman is providing a masterclass in scaremongering. I know he needs Labour votes to switch before Third Reading, but this service must be explicitly commissioned by the Secretary of State, and it is inconceivable that they would commission that in the way that the hon. Gentleman describes. The co-ordinating doctor is of course one person, and they would be involved in the first assessment and the provision of assistance. Whether that is a doctor employed by the NHS or somebody else, it can only be one individual, but there are the other safeguards we have talked about, such as the panel, which the hon. Gentleman has spoken against. It is absolutely appropriate that the Secretary of State has the powers and the duty to commission the service, and that they will do so from range of providers, reflecting the differences.

On the other point that some hon. Members have made about regulation, I remind the Committee that any provider will be regulated not only under this Act, but by the Care Quality Commission, in entirely uniform manner. I am therefore confused by the points made by opponents of the Bill. Some have said there should be no provision of this by the NHS or any public body, some say there should be no provision by charities—including, presumably, local hospices, should they make that decision—while others say there should be no provision by local GP practices to provide continuity of care.

Perhaps those different points reflect different ideologies within the Committee that are deeper than this issue, but they perhaps also reflect the fact that opponents of the Bill simply do not want this service to be provided at all.

[Sarah Olney]

Will the hon. Member give way?

[Lewis Atkinson]

No, I am going to finish this point.

The hon. Member for East Wiltshire did a good job of reading a Bevan quotation before—although I do not advise him to seek Labour party selection with such gravitas in his voice. However, I think he is the heir not to Bevan, but to Bernard Braine, the Member for South East Essex, who said in the 1967 debate on the David Steel abortion Bill:

“The idea has been spread around that it will be available on the National Health Service.”

In reference to the waiting lists, Braine went on to ask:

“Are our consultant gynaecologists going to make that list longer by making beds available to those who want abortions?”—[Official Report, 13 July 1967; Vol. 750, c. 1382.]

That is the tradition of objection that the hon. Member for East Wiltshire is in. Just because he does not wish to have the option for himself, he does not believe that there should be free-at-the-point-of-use provision on the NHS for anyone else.

I will take Bevan back to this side of the Committee Room. He said:

“The essence of a satisfactory health service is that the rich and the poor are treated alike, that poverty is not a disability and that wealth is not advantaged”.

At the moment, at the end of life, wealth clearly is advantaged. Those who are wealthy and are able to go to Switzerland do have choice at the end of life. Dignity and independence and autonomy should not be based on ability to pay. That is why we need to pass this Bill; that is why the powers to commission in new clause 36 are entirely appropriate and necessary; that is why I support it.

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

Sarah Olney Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Sarah Olney (Richmond Park) (LD)]

To pick up on what the hon. Member for Spen Valley said, the multidisciplinary panel comes at the very end of the process. She has talked about the different stages, but they all occur in isolation. There is a doctor, then there is another doctor, and then there might be a psychiatric referral. We heard clearly in oral evidence about the value of the multidisciplinary panel referring to each other and taking evidence collectively. The strength of it would be that it occurred at the beginning of the process. I wonder whether the hon. Member will reflect on that.

[Daniel Francis]

I think that is the case. As the hon. Member said yesterday, people from those professional fields—in their written evidence, particularly—asked to be included in the process, but I do not think they were asking to be included at the end of the process; I think they were asking to be included earlier.

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

Sarah Olney Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Danny Kruger]

I regret that my right hon. Friend is making that argument. The fact is that the panel is already going to consider whether it is appropriate. There might not be some professional who is there with the purpose of suggesting that there are other things that the panel should consider, but the patient is already lying there waiting for powerful people in another room to make a decision about whether they are going to get an assisted suicide or not. That process is already going on.

On my right hon. Friend’s point that it is intolerable for somebody to hear the case made against their assisted death, let me put to him an alternative hypothesis. Rather than somebody in the situation that he describes, let us imagine somebody who is the victim of years of coercive control, who has undiagnosed mental health conditions, who is feeling a burden on their family and whose relatives want their money. None of that has yet been fully identified through the initial doctor’s stage of the process, but it has been commented on in some of the evidence that the multidisciplinary team heard. That person might hope that somebody is there making the case for them, as might their family.

It is totally appropriate for a court to hear that this procedure should not go ahead because of those other factors, which are only now being properly understood by the decision maker. That decision maker is doing so openly, not in a private session. The decision is being made not by people who are committed to the procedure and process of assisted suicide, but by an independent judge, sitting in their judicial capacity in open court, with all the safeguards and accountability that the judicial system has. That feels to me like a perfectly appropriate safeguard, and I suggest that it is, in principle, what the House of Commons thought they were getting when they supported this.

[Sarah Olney (Richmond Park) (LD)]

I am just reflecting on the right hon. Member for North West Hampshire’s intervention. Does the hon. Gentleman not agree that the purpose either of the panel or the High Court judge is to establish beyond all doubt that if a person is assisted in their death, no crime is being committed, and that in order to establish that, we need to apply the highest standards of evidence? Whether an adversarial or an inquisitorial process is used to collect that evidence, there must be some sort of process. That may be uncomfortable for the patient but it is necessary for their friends, relatives and the doctors being asked to assist. That is really what we are trying to achieve.

[Danny Kruger]

I am grateful to the hon. Lady for making that absolutely central point. This is a judicial process, and a decision is being made. I recognise that the hon. Member for Spen Valley has correctly abandoned the claim that this is a judge-led process—because it is not—but the function of this panel will be essentially judicial, not least because the decision to proceed with an assisted death entails the people involved in administering it being exempt from criminal law and not being liable to prosecution under the Suicide Act 1961. We have made an exemption for what is otherwise a crime, and if they do not get the go-ahead from this panel, they will be committing a crime if they proceed. So in all essence, a judicial decision is being made, and it is right that we have the protections of a court.

Let me make a couple of brief points about the practicalities, and they have partly been made by others. The central point is that we do not know whether the professionals who will be required to take part in this panel have the capacity to do so. We know that the judges do not have the capacity under the current design of the law, which is an essential flaw—or we think they do not, because that point has been comprehensively argued by the judiciary and I suspect by officials at the Ministry of Justice. What we do not know is whether the psychiatry and social work professions have adequate capacity. There has been no impact assessment, and we have had a lot of comments from representative bodies expressing anxiety about the capacity of these professions to supply the panels.

The point I am trying to make is that we cannot, and should not, legislate in the dark. We should not draft laws in ignorance of these basic facts. We need to know whether the law before us is workable in the real world, and I would be grateful for clarification on that from Ministers when they speak to this clause. In my view, we need robust and clear data on how many professionals might take up the posts, and more importantly, we need the clearest and earliest warning of where there might be deficits that would compromise the entire system, particularly around the capacity of psychiatrists. We have a central problem with ignorance around capacity, but my strong view is that we do have a problem with capacity.

An important point was made by Alex Ruck Keene in evidence around the judge-led process, which we discussed earlier. His point was that it would not be possible for the judge to decline an assisted death on the basis of what he calls service denial—that is, there is not enough social care treatment or medical treatment available for the patient. If the reason why the patient were to receive an assisted death was that the local authority would not provide them with improvements to their home or funding, or that they could not get the medical treatment they wanted early enough, that would be a legitimate reason, or would not be a reason not to proceed with an assisted death. That is a very grave concern to us, and it is what happens in other countries. We heard this morning about evidence that when a patient is denied the medical or social care that they need to carry on living and living well, they are offered an assisted death. In those circumstances, I would really hope that the decision maker would conclude that it is wrong that we offer an assisted death, and that we in fact need to insist that they get the support they need to live well. I reference that because, as I understand it, there is no opportunity in the new clauses for the panel to decline an assisted death on grounds that it is being sought only because of the inadequacy of the wider care system.

It has been suggested that the judicial option remains, through the judicial review system. Other hon. Members have responded to that point, so I will not labour it. However, I want to make the point that new clause 17 makes judicial review less likely because it offers the opportunity for a sort of appeal. It is an appeal only in one direction—against a refusal—but there is a sort of appeal process in the system. As my hon. Friend the Member for Reigate said, if there is a JR, it is likely to take a long time. There is nothing about whether legal aid will be arranged. The state has proposed to pay for people to go through the assisted dying process, but is not prepared to pay anybody to challenge it, so they would have to raise their own money. It would also take a long time. It would be much simpler and better, whether it is a panel or a judge, to set up the system in a way that allows both sides to be told and that does not rely on a cumbersome judicial review system.

I reiterate that I support the multidisciplinary team. It is a very good thing that the hon. Member for Spen Valley has decided to introduce a proper stage at which a psychiatrist and a social worker will have to consider the application properly. I have concerns about how it would actually work, which I will come on to, but having a multidisciplinary team is in principle the right system. I stress that the professionals who made the case for multidisciplinary teams as part of the assessment process have not endorsed the new clauses. They are not saying that we have adequately met their concerns about the process.

--- Later in debate ---

[The Minister of State, Ministry of Justice (Sarah Sackman)]

It is a pleasure to serve under your chairship, Ms McVey.

As my hon. Friend the Minister for Care and I have made clear throughout debate, the Government continue to remain neutral on the Bill and do not have a position on assisted dying. Once again, my remarks will focus on the legal and practical impacts of the amendments, with a view to assisting Committee members. I will first speak to amendments 371 to 373, 377, 378, 381, 388, 390 and 391, new clauses 14, 15, 17 and 21, and new schedules 1 and 2, all tabled by my hon. Friend the Member for Spen Valley.

In executing our duties to ensure that the legislation, if passed, is legally robust and workable, the Government have worked with my hon. Friend the Member for Spen Valley in relation to the amendments, which propose the voluntary assisted dying commission and the panels. They reflect my hon. Friend’s intent to replace the court approval process that is currently set out in the Bill. I confirm that this change was driven not by capacity concerns from within Government, but by the Bill promoter’s policy intent. Let me be clear: the High Court stage could be made to work, but if the Committee and Parliament elect for the commissioner and panel model, the state will work to deliver that.

New clause 14 and consequential amendment 391 would provide for the establishment of a voluntary assisted dying commissioner. In keeping with other appointments of this significance, the commissioner would be appointed by the Prime Minister, and the individual in post must hold or have held office—so it is not sitting judges, but could be a retired judge—as a judge of the Supreme Court, the Court of Appeal or the High Court.

New clause 14 sets out the central functions of the commissioner, which will be detailed further in new clauses 15 and 17 and new schedule 1. The commissioner would receive documents, including the reports from the co-ordinating doctor and declarations under the legislation, make appointments to the list of persons eligible to sit on assisted dying review panels, and refer cases to those panels, which would replace the role of the High Court in the original draft of the Bill. In addition, the commissioner would have the responsibility for monitoring the Bill’s operation and reporting annually to Parliament, which we will no doubt come to in clause 34. It is important to pause there, because that is one aspect in which the commissioner model is distinct from that of a court or tribunal. It will serve multiple functions, not least the monitoring of the Bill’s operation and reporting on that annually to Parliament.

New schedule 1 contains practical arrangements for the office of the voluntary assisted dying commissioner, as established in new clause 14. In practice, we anticipate that the commissioner’s office will be a non-departmental public body. The establishment of such an office to support the Government-appointed chair or commissioner is common practice for roles of this nature. One such model is the Investigatory Powers Commissioner, which is chaired by a person who is holding or who has held high judicial office. The schedule also introduces the role of a deputy commissioner, who, like the commissioner, must have been appointed by the Prime Minister and hold or have held office as a judge of the Supreme Court, the Court of Appeal or the High Court.

Both the commissioner and deputy commissioner would be appointed for terms of five years, with their remuneration set by the Secretary of State. The commissioner would have the ability to appoint their own staff, having obtained approval from the Secretary of State in regard to the number of staff, the remuneration and the terms, as well as providing an annual statement of accounts. In the ordinary way, such a public body would be subject to other statutory provisions, not least the Equality Act 2010.

New clause 15 would establish the mechanism for the referral by the voluntary assisted dying commissioner to an assisted dying review panel. When the commissioner receives a first declaration from the person seeking assistance, and reports from the co-ordinating and independent doctors as to their assessments of the person—including a statement by those doctors as to the person’s eligibility for assistance—they would be required to refer the case to a panel as soon as reasonably practical. In practice, the task of organising the work of each panel would fall to the commissioner’s office. The co-ordinating doctor would be required to inform the commissioner where a first or second declaration is cancelled. Where the commissioner is informed of the cancellation of the first declaration, they must not refer the case to a panel, or must inform the panel to disregard the application if already referred.

Amendments 371, 372, 373, 377, 378, 381, 388 and 390 are all consequential amendments on new clause 21, and together establish the mechanism for the consideration of cases by the assisted dying review panels in place of the High Court. Panels would be required to review each case and issue a certificate of eligibility where they are satisfied that all requirements set out in the Bill have been met.

[Sarah Olney]

I seek clarification. As drafted, in clause 12(1)(c), the High Court would give

“a declaration that the requirements of this Act have been met”,

but in new clause 21(6)(a), the panel is required to issue a certificate of eligibility, to which the Minister just referred. I seek the Minister’s guidance on whether it is the Government’s view that the High Court declaration has equal weight in law to the certificate of eligibility set out in new clause 21. I ask particularly because that certificate will be relied on for the purposes of suspending the Suicide Act 1961, under which a criminal offence would otherwise have been committed. The certificate of eligibility will need to be relied on to demonstrate that no criminal offence has been committed under that law. Is it the view of the Minister and the Government that a High Court direction, as originally required, can now be fully replaced by, and have equal weight with, a certificate of eligibility?

[Sarah Sackman]

As I understand it, everything has to be internally coherent in whatever the final draft of the Bill is. Within this structure, because in this case it is a panel that issues the certificate, it is its own sui generis certificate appropriate to this process. The declaration that was referred to in the earlier draft is one that the High Court would normally do. Given that this is on the face of the Bill, and will be in primary legislation, it would have legal force and would, if it were internally coherent with the rest of the legislation, have the legal effect of operating coherently with the criminal offences and, indeed, with the suspension of the Suicide Act, as the hon. Lady just asked. That is my understanding.

[Sarah Olney]

My original question was more about whether it has the same legal force as a High Court direction.

--- Later in debate ---

[Sarah Sackman]

I drew the comparison for the purpose of showing where judges and legal experts are deployed in a multidisciplinary forum that is not a court or tribunal. I was not suggesting that there is a straight-line analogy. After all, a Parole Board panel is performing a different function to make a global assessment of risk. That is what it is ultimately doing; it is not strictly speaking an adversarial process in that sense.

The situation that the Bill addresses is that of an individual seeking to establish their eligibility for a right that—if the Act is passed—Parliament will have conferred on those who meet the criteria. It is not an adjudication. It is the panel’s function to assess, through the various conversations and provisions and by interrogating the information that has been provided, whether it is properly satisfied that the eligibility of the person’s election to avail themselves of that right is sound.

[Sarah Olney]

I am trying to clarify this for my own benefit, because I am not familiar with some of these procedures. Is there a difference between a High Court judge leading an inquiry or sitting on a panel, using their legal experience to provide advice or recommendations or give an opinion, and having a judge sitting in the High Court, who, under the original wording of clause 12, would be giving a direction? If there is a difference, have we not crossed from one role to the other by introducing a panel rather than a High Court direction? Does that matter for the purposes of the legislation?

[Sarah Sackman]

To be absolutely clear, what we are discussing reflects the intent of my hon. Friend the Member for Spen Valley. It is important to break it down. We have a judge in the role of the commissioner, and the commissioner will set up the framework and guidance for how the panels will operate and will lend their expertise. Our judges often sit on the Civil Procedure Rule Committee, developing the appropriate practice to govern the process in question. In this case, it would be the process of providing the third layer and the assessment whether the eligibility criteria have been met.

The commissioner would also—and this is where the role is distinct from that of a court or tribunal—provide a monitoring and reporting function to Parliament on the operation of the Act. That is a fundamental distinction from the model that we will have if we pursue clause 12, because in that case each application for an assisted death would go to whichever High Court judge happened to be sitting on that day. There would be no requirement for particular expertise on the part of the High Court judge, and that judge would not have to report on the operation of the Act. It is a different model that my hon. Friend has elected.

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

Sarah Olney Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Dr Opher]

I agree that the threshold is the same: does the patient have capacity or not? That is the single threshold. We often do mental capacity assessments for inheritance, control of bank accounts and that sort of thing; sometimes we do a very quick mental capacity assessment about the refusal of treatment. How long we take depends on how important the decision is. I suggest that a doctor assessing someone’s capacity to make a decision to end their life would have a serious, long discussion—up to 90 minutes, or possibly even two hours—to make sure that the doctor is convinced that the patient has capacity. The threshold is the same—it is about whether they have capacity—but that does not mean that the conversation is the same. In clinical terms, it is very clear that a conversation on those grounds would be much more involved than, for example, whether a person sees a dentist or not, or other conversations like that.

I totally understand the concerns that the amendment has been tabled to cover; however, my main point is that if we accept the amendment, it will make the Bill less safe. The reason for that is that, as I have said before, if we change something that is well used, and repeatedly used, it will make the interpretation much more complicated. We will have to re-train all the doctors and, I think, it will not protect patients.

[Sarah Olney (Richmond Park) (LD)]

At risk of repeating something said in a previous sitting, does the hon. Gentleman accept that the amendment is not trying to amend the Mental Capacity Act itself, and it is not trying to change how the Mental Capacity Act is used in the majority of situations in which it is already used? All it is trying to say is that in this particular circumstance the Act needs to be applied in a different way. We are not trying to rewrite the Act in itself or any aspect of the way in which it is currently used.

[Dr Opher]

I understand what the amendment is trying to do; my argument is that it will not achieve that because it will muddy the waters of a mental capacity assessment, which will make how we do it less safe. I would also like to return to Professor Whitty’s comments and to say that in the majority of cases mental capacity is very clear. It does not actually take very long to assess whether someone has mental capacity.

--- Later in debate ---

[Dr Opher]

It does reassure me, and I think it should reassure other Committee members. Having eight different people doing a capacity assessment is a very thorough safeguard for capacity. We have gone through the arguments many times in this Committee, but I do not feel that changing the polarity of mental capacity will do anything to make patients in this situation any safer. That is why I do not agree with the amendment. For fear of being interrupted any more, I think I will leave it at that.

[Sarah Olney]

I apologise for arriving late; thank you for calling me to speak anyway, Mr Dowd. I rise to speak in favour of amendment 50, which stands in the name of the hon. Member for Runnymede and Weybridge (Dr Spencer) and to which I have also put my name. I am conscious that we have been through many of the arguments about the Mental Capacity Act today and at an earlier sitting, but I am keen to press the amendment to a vote, because I think it would address some of the issues that have arisen.

The point of dispute appears to be whether the Mental Capacity Act, as it is currently operated for all the purposes for which it is used—I have no doubt that it is a very effective piece of legislation that is widely used and understood by clinicians everywhere, as the hon. Member for Stroud says—is the appropriate measure and tool to use for the Bill. This decision that people are embarking on is like no other, so I think it right and proper to consider whether the Act is the appropriate way to measure whether people are able to make it.

It is useful to reflect on the experience of the hon. Member for Runnymede and Weybridge, who drafted the amendment. I am conscious of the comments that the hon. Member for Ipswich made yesterday about poorly drafted amendments. My understanding is that the hon. Member for Runnymede and Weybridge has extensive expertise in the area; he is an expert in mental capacity assessment, and I dare say that if he were in the room he would have many useful and interesting things to say. That is why I think his amendment bears greater weight, to the extent that one Member’s amendment should be regarded as any better than another’s.

Key to the Mental Capacity Act is the capacity test, which is about the ability to understand, retain, use and weigh the relevant information. The amendment attempts to address what it means to make an informed decision. Dr Annabel Price, who gave oral evidence to the Committee in her role with the Royal College of Psychiatrists, said that people planning to make the decision of seeking an assisted death

“would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are…The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 277, Q361.]

The point, which has come up in previous debates, is whether an informed decision to refuse treatment can be regarded as the same as an informed decision to end one’s life. My personal view is that the two things are quite different, and that a different standard of capacity should therefore be brought to bear on the decision.

I support amendment 50 because it sets out in detail how the Mental Capacity Act should be used specifically in relation to this decision. As I said in an intervention on the hon. Member for Stroud, it would not change the Act or tamper in any way with how it is currently used; it would merely specify the particular ways in which it should be used in relation to the decision.

I hear what the hon. Member said about doctors’ use of the Act, as well as what the chief medical officer said. I am also conscious of what the hon. Member for Bexleyheath and Crayford has said about the variety of experience that he has, as a parent, with professionals’ understanding of the Act. That came across in a lot of the oral evidence. As the hon. Member for East Wiltshire said, the chief medical officer himself had to clarify the remarks that he made to the Committee in oral evidence. The chief medical officer implied that there were different ways of applying the Act depending on the decision to be made, but there are not—that was a very clear clarification. That implies that there is a difference in the way doctors approach the use of the Act. We cannot have a difference of approach when it comes to a decision of such momentous importance as the decision whether someone has the capacity to choose to end their life.

The amendment reflects the fact that there is value in attempting to standardise how the Mental Capacity Act should be used in relation to the decision. That is why we should agree to it: it is important that Members of this House make a clear statement in the Bill about what we expect doctors to do as they approach an assessment of capacity. We should specify the minimum understanding of capacity to choose an assisted death, which includes an understanding of the likely process of all treatment options, including non-treatment and prognostic uncertainty.

In her evidence, Dr Rachel Clarke said:

“I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 80, Q103.]

Doctors have different assessments of their own ability to assess capacity. That is why a standardised approach, as set out in amendment 50, is so important. I stress how important it is that Parliament be the place where the standards for what MPs expect as an assessment of mental capacity are set. We should be the ones to determine them, rather than leaving them to the vagaries of individual clinicians.

The assessment of capacity and the explanation of treatment options to the person considering an assisted death need to include the extent of prognostic certainty about their illness or condition. We spoke yesterday about the difficulty of knowing whether someone has six or 12 months left to live, and of knowing the extent to which they are going to deteriorate. We also covered in detail the relevant and available care and treatment, including palliative care, hospice care or other care. That needs to be part of the conversation about somebody’s capacity to make the decision.

Amendment 50 states that

“a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.”

It would therefore be clear that somebody had assessed the full range of their options. The amendment makes clear a fundamental issue that I do not think is otherwise covered by the Mental Capacity Act, or at least not to this level of specificity, which is that

“the person’s decision to proceed…must be theirs alone and not bound or directed by the views or decisions of others.”

We have talked about the importance of that issue in relation to the Bill as a whole, but it would be valuable to include it in the clause as a specific requirement for assessing somebody’s capability.

Doubts have been expressed across the Committee about whether the Bill goes far enough in assessing the extent to which somebody might be under duress or coercion. Putting such a provision in the Bill, as part of the capacity assessment, would be an important and essential safeguard. Once someone has made the decision to seek an assisted death, is the doctor or assessing person confident that the person could unmake the decision or change their mind at any stage?

[Dr Opher]

As my hon. Friend the Member for Spen Valley said, there are eight different opportunities for assessing capacity in the process, the last of which is before the patient takes the medicine that will end their life. At all those stages, it is possible to stop the process, and the patient is in total control.

I do not disagree with anything in amendment 50, but I believe that everything in it is already in the Bill, under other clauses. I do not think that the amendment would add anything to the Bill; it would actually make assessing capacity more confusing, from a legal perspective.

[Sarah Olney]

What I would say in reply to the first part of the hon. Member’s intervention is that there are plenty of opportunities for the person to change their mind—although I might slightly indelicately point out that there will eventually not be a further opportunity; that is the point of what we are trying to do—but that does not necessarily mean that the person has the capacity to make the right decision at each of those opportunities. That is what the doctors will need to assess.

I return to my earlier point: it is important that Parliament specify, by way of this amendment, precisely what it means by assessing capacity. In the context of all the evidence we heard that there is not necessarily a standardised approach across the medical profession, it is important that the standardised approach be specified in the legislation. Clause 3 is the appropriate place to specify it.

The other major point is that patients need to understand the process by which the assisted death will be enabled. The Bill states elsewhere that it will be by the ingestion of an “approved substance”. It is important that we understand exactly what that means, or what it might mean. We will doubtless get on to talking about the approved substance and the proper legislation around its use.

We did not speak much during the oral evidence sessions about the use of the approved substance, but it is important that people understand that any medical procedure can fail, including with an approved substance, and we do not know how long the substance will take to be effective. Nor do we know what the patient’s experience will be after taking the approved substance. It is important that they understand, to the extent that it is possible for a doctor to give them the information, what they are undertaking.

In his evidence, Professor House said:

“It is a striking feature of the Bill that informed consent is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be…There is no standard informed consent form related to the Bill, for example—of the sort that you would expect to sign if you were having a serious intervention in the NHS.”––[Official Report, Terminally Ill Adults (End of Life) Private Member’s Bill Committee, 29 January 2025; c. 169, Q216.]

He said that informed consent was very underspecified in the Bill. The amendment could start to address that. It is important that people have the capacity to understand what they are undertaking—not just that they are choosing an assisted death, but all the potential attendant risks and complications.

I return to my opening point, which is that it is important that Parliament specify a standard by which mental capacity can be assessed in relation to this specific decision. I feel that I have made the point a number of times, but I will make it once more: we are not proposing to rewrite the Mental Capacity Act or tamper in any way with how it is currently used. We are merely setting a higher bar—a higher standard for how it should be applied in this particular case, because of the very specific nature of the decision that patients are being asked to make in this particular circumstance.

--- Later in debate ---

[Sarah Olney]

I want to pick up on a point that the hon. Member made before the previous intervention about the rights of the doctors themselves. This is an important point that we do not consider enough. We talk a lot about the rights of the patient, quite rightly, but this Bill will provide the means by which another person can get involved in someone’s death. It is really important that the legislation protects the rights of that person—the doctor involved—as well. Does he agree that providing greater clarity about the standard required to assess capacity will help the doctor to protect their own rights, perhaps in response to legal challenge from families, and that it is important that we consider the rights of the doctor as well as the patient?

[Danny Kruger]

The hon. Lady is absolutely right. It is an interesting irony of the Bill that it is presented as the free choice of individuals, but actually it imposes all sorts of obligations and repercussions on other people—the very term “assisted” conveys that. Many other people will be affected by the decision to take an assisted death. She is right that it would be very helpful for the doctors to be confident that they have done their job properly because they have a clear list of communications they are expected to make.

My understanding is that doctors are indemnified against legal challenge in consequence of decisions they make around this; that is an interesting point and one that I am uncomfortable with, but we will come to that later in the Bill. Leaving lawsuits out of it, from the point of view of the doctor’s professional conduct and their peace of mind, it would be very helpful for them to have it clearly specified what information they are required to convey.

I am grateful for Members’ interventions, and I appreciate the good faith and good sense that has been spoken, but I have not yet heard any reason for objecting to this amendment, other than the possible question of its being otiose and not necessary. That is not a sufficient reason to object to an amendment. We should not be objecting simply on drafting grounds. There can be tidying-up exercises later if there is repetition. I have not heard objections to the content of the amendment, and I would very much welcome Members’ support.

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

Sarah Olney Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway.

Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.

[Sarah Olney (Richmond Park) (LD)]

Does the hon. Lady agree that the purpose of this amendment is to ensure the Bill delivers for the people for whom it is intended, such as the person the hon. Member for Spen Valley spoke about? It would put in place protections for the people for whom there is a choice, and that where those choices exits, they are laid out in full and properly examined before a final decision is made.

[Naz Shah]

I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it.

As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care.

There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it,

“They are doing this to save money…to kill us off.”

To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.

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

Sarah Olney Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

Not yet; I am finishing my point. It has a clear legal meaning, and we must not put the blinkers on. I would suggest to Members that if they have an issue with the word “suicide”, they remember that this will actually result in the end of someone’s life. We must not be squeamish about using correct and accurate terminology in what we describe.

The second point made by my right hon. Friend the Member for North West Hampshire is a really good point: it is a fine line and it is really difficult. I have proposed this amendment not because I want “encouragement” specifically to be in the Bill, but because the encouragement of suicide is already a crime. I am being logical and taking what is already a criminal offence under the Suicide Act. If we do not include it in the Bill, it means that someone can commit a criminal offence against a victim, and that does not preclude the victim from being eligible for assisted dying, so I am suggesting a very logical amendment. My right hon. Friend makes a great point, but if we have an issue with the word “encouragement”, we need to take that up with the drafters of the Suicide Act, which was long before my time in 1961.

[Sarah Olney (Richmond Park) (LD)]

Does the hon. Lady agree on the value of her amendment, and the value of introducing the word “encouraged” into the Bill? Reflecting on what has been said about the “fine line” argument by the right hon. Member for North West Hampshire and the hon. Member for Harrogate and Knaresborough, the value of inserting this amendment is that, where it can be proven beyond doubt that someone has encouraged or actively sought to influence someone else to choose assisted death, that is a crime encoded in the law.

To the point made by the right hon. Member for North West Hampshire, in discussions among families about this possibility, and where spouses are supporting each other in this decision, it will never be demonstrated beyond reasonable doubt that a crime of encouragement has taken place. By putting it in law, where encouragement can be proven—and it must be proven—it can be prosecuted as the criminal offence that it would be.

[Rebecca Paul]

As ever, the hon. Lady so eloquently makes her point and I completely agree. I am not a lawyer but, given that the Suicide Act made the encouragement of suicide a criminal offence back in 1961, I imagine there is quite a lot of case law that would help define where that line is drawn on encouragement, but I would refer to better qualified people than myself.

--- Later in debate ---

[Rebecca Paul]

I thank my hon. Friend for that intervention. The point that I would make is about an example that we talked about a lot yesterday, so I know that it resonates for many on the Committee. If someone is making a decision and a treatment is being withdrawn, or life support is being turned off, undue influence is already one of the things they consider, so when we are considering assisted death, surely, in order to be consistent, we would apply undue influence to that as well, rather than having a lower level. Why would we have a lower threshold for assisted dying compared with withdrawal of treatment?

[Sarah Olney]

The hon. Members for Sunderland Central and for Penistone and Stocksbridge said of existing concepts in law, “This is how they have always been used.” It was reminiscent of the conversation we had yesterday about the Mental Capacity Act 2005, and mental capacity being an established concept in law, and “This is the way that it is always applied.” Does the hon. Lady agree that although precedent and established usage are extremely important, the Bill is quite a novel piece of legislation, and it is really incumbent on us as a Committee to ask ourselves whether we need to approach this piece of legislation in a different way, compared with other pieces of legislation that have gone before; and whether, just because something has always been used in a particular way, it is still appropriate for it to be used in that way for this legislation, as a general principle?

[Rebecca Paul]

I completely agree. If we do not incorporate undue influence, we are at a lower threshold compared with withdrawal of life-sustaining treatment. That does not feel to me like the right position, but equally, this is a novel bit of legislation and we need to increase the safeguards further. Obviously, we shall be debating numerous amendments whose purpose is to raise that threshold. It is always very hard—how long is a piece of string?—to know exactly where to set a threshold. Different people have different views. My personal view is that in this Bill the threshold is too low, so we need to raise it by agreeing some of these amendments. So far, none of the amendments that have been suggested has been accepted. I really hope that during this Committee stage we will increase the safeguards.

--- Later in debate ---

[Rebecca Paul]

I completely agree with the hon. Lady. We should not make the mistake of assuming that certain amendments will be accepted. Until there is a Division, we do not know what the Bill is going to look like. It is incredibly difficult to table amendments early on when we do not know whether other fundamental things are going to change. That is why it is important that we are really thorough and improve the safeguards as much as we can, clause by clause. I do not want to get to the end of this process without our having accepted any of the improved safeguards, only for the Bill to be turned on its head at the end when there is a Division on something fundamental. As the hon. Lady rightly says, we do not get the opportunity to come back and review the decisions we have made on the back of that.

[Sarah Olney]

Further to the point made by the hon. Member for Bradford West, is it not a further complication that if a question is put in Committee and considered settled, it cannot be revisited on Report by any other Member outside the Committee? It may well be the case that amendments that are accepted further down the line fundamentally change the nature of the Bill, and Members who are not on this Committee will be prevented from revisiting questions in respect of the early clauses because the matter has been discussed in Committee, is considered settled and cannot be revisited on Report.

[Rebecca Paul]

As a new MP—there are many in the room today—I am still very much learning the process; we have to contend with not quite understanding how the full process works. In two years’ time, I think that I and many other new colleagues would be in a different position and would fully understand all the interactions and the subtleties of the legislative process. But it is a challenge I have, which is why, right now, I will always table the most robust amendments that I think will safeguard the most vulnerable in our society.

--- Later in debate ---

[Naz Shah]

I would like to hope that that would never happen; I have a huge love of the NHS and of the people I know in it who make decisions every day, particularly given all the cuts—even more so, post covid. But there is that risk; I would like to hope that it is very small.

When it comes to mental health, the debate is similar to the one about capacity: it is the same conversation about whether something is fit for purpose. Just because something already exists does not mean that it will necessarily suit what we are doing here.

On International Women’s Day, the Minister for Safeguarding and Violence against Women and Girls, my hon. Friend the Member for Birmingham Yardley (Jess Phillips), eloquently reads out a list of victims of domestic violence who have been murdered. There are two a week—I make no apologies for keeping coming back to this. Only yesterday, there was an article about women’s charities that support victims of domestic abuse citing their concerns. The amendment speaks to those concerns. How could it not be supportive?

I am not convinced by the idea that the amendment would introduce an element of jeopardy. People make decisions with their families every day. We sit and have conversations. I speak from a position of privilege—as we all do in this place, frankly. We speak from positions of privilege about how we could have these conversations with our families. But we know that inequalities exist and that some people do not have those privileges. We know that society is unequal. We know that domestic abuse, elder abuse and mental health issues exist.

In my constituency, it takes 14 months just to get a child and adolescent mental health services referral for a young person; I appreciate that we are not talking about young people. My point is that there is a real backlog in the NHS—in terms of waiting times and pain medication, for example. Palliative care is not equal, as I said yesterday. I am genuinely asking Committee members: which bit of the amendment can we not support?

[Sarah Olney]

The hon. Lady is making a powerful speech. She referred to an article she read yesterday about domestic violence in relation to the Bill; it may have been the article by Sarah Ditum in the New Statesman, which I also read yesterday. It cited two cases in which people had been on trial for murder and had pleaded mercy killing, or said that they had carried out the killing of their spouse or partner on the basis that that person was suffering greatly at the end of their life. In both cases, when the evidence was examined, the men were found guilty of murder, because it was very clear that that was what had actually happened.

The article had a profound impact on me, because it demonstrated the risk that we are running: that people will be able to use the Bill in instances of domestic violence. We have to take that very seriously and consider the implications.

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

Sarah Olney Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[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.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 36, in clause 7, page 4, line 7, leave out “capacity” and insert “the ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 37, in clause 8, page 4, line 34, leave out “capacity” and insert “the ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 38, in clause 9, page 6, line 27, leave out “capacity” and insert “ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 202, in clause 9, page 6, line 31, leave out “capability” and insert “capacity”.

This amendment corrects a typographical error.

Amendment 39, in clause 9, page 6, line 31, leave out “capability” and insert “ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 40, in clause 12, page 8, line 2, leave out “capacity” and insert “the ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 41, in clause 13, page 9, line 31, leave out “capacity” and insert “ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 42, in clause 18, page 12, line 23, leave out “capacity” and insert “the ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 43, in clause 30, page 18, line 16, leave out “capacity” and insert “the ability”.

This amendment is consequential on Amendment 34 and NC1.

Amendment 44, in clause 40, page 23, line 26, leave out from “capacity” and insert “ability”.

This amendment is consequential on Amendment 34 and NC1.

New clause 1—Ability to make decision—

“The person is to be considered as having the ability to make a decision to request assistance to end their life if they can fully understand, use and weigh the relevant information in accordance with regulations made by the Secretary of State under affirmative resolution.”

This new clause defines the concept of ability which is intended to replace the concept of capacity. This new clause is intended to replace clause 3.

Amendment 45, to schedule 2, page 26, line 36, leave out “capacity” and insert “the ability to make a decision”.

Amendment 46, to schedule 3, page 28, line 1, leave out “capacity” and insert “the ability to make a decision”.

Amendment 47, to schedule 5, page 30, line 14, leave out “capacity” and insert “the ability to make a decision”.

[Sarah Olney]

It is a pleasure to serve under your chairmanship, Ms McVey. I thank the hon. Member for Spen Valley for her opening remarks. I am grateful to be called so early in proceedings, because I believe this is one of the really important issues before us. It is about whether or not somebody

“has the capacity to make a decision to end their own life”

as is stated in clause 1(1)(a). I believe that the word “capacity” in this context is potentially difficult to define. I note that in clause 3, all reference to mental capacity is assumed to refer to the Mental Capacity Act 2005, but I do not believe that that is sufficient for the purposes of the Bill. We heard plenty of voices to support my point of view during the oral evidence, so I want to reflect on that.

I think there are four separate concerns about using the Mental Capacity Act 2005 to judge capacity. The Royal College of Psychiatrists submitted its original written evidence in January, which we have all had sight of, and it said:

“Under the Bill as introduced, a person with a co-occurring mental disorder that is impacting their wish to end their own life would not necessarily be deemed ineligible; only those whose mental disorder was deemed to impair their capacity to make a decision to end their own life would be excluded.”

That means that an individual could have a terminal illness and also separately have a mental illness, such as depression; that would affect their ability to make a decision as to whether that terminal illness was sufficient for them to ask for assistance with dying.

--- Later in debate ---

[Daniel Francis]

The Mental Capacity Act is written to enable people to carry out day-to-day scenarios, such as buying a coffee or doing their banking, so that they are not challenged in every transaction in their life. It is therefore a very low bar to be deemed to have capacity. Does the hon. Member believe that it was written for this kind of scenario?

[Sarah Olney]

That is an absolutely relevant point. The Mental Capacity Act was not drafted in anticipation of it ever being used for this kind of scenario. Therefore, it is really incumbent upon us to weigh very carefully whether the Mental Capacity Act is the right way of assessing people’s ability to make this decision. As I was saying, it includes the presumption of capacity, and for a decision to end one’s life, an assumption of capacity to make that decision is a low bar, and we have lots of evidence.

[Danny Kruger]

I am interested in that point about the Mental Capacity Act not having been written with the Bill in mind. That is absolutely true for the minds of its framers and the Parliament that passed it at the time. It is worth noting, however, that we can see from the accounts and records of the Voluntary Euthanasia Society, which became Dignity in Dying a few years later, that it was lobbying at the time covertly—or behind the scenes—for the Mental Capacity Act to be framed in exactly that way. The Voluntary Euthanasia Society was very conscious that, when the time came to pass the law for assisted suicide, it would be very helpful to have a capacity Act on the statute book that had this very low bar. The society was delighted when the Act was passed in the way that it was, and it boasted at the time of the influence it had had on the Act.

[Sarah Olney]

That is a very interesting intervention. I cannot comment on that because I have no knowledge of how the Mental Capacity Act was drafted or the evidence that was taken.

[Dr Simon Opher (Stroud) (Lab)]

I do believe that the Mental Capacity Act enables people to make very serious decisions, such as stopping cancer treatment, so I would absolutely dispute the hon. Lady’s interpretation of it.

--- Later in debate ---

[Sarah Olney]

The hon. Gentleman puts his finger on the exact point: it allows people to make a decision about whether or not they want to continue treatment; it has not been used in this way before, and it was not intended to be used for that purpose. I understand the hon. Gentleman’s point: he was trying to say that to stop treatment is akin to making a proactive decision to end one’s life, but I would argue that it is not, and that is why the Mental Capacity Act is unsuitable for this purpose.

It was interesting to reflect on the oral and written evidence we received on this issue. Professor Sir Chris Whitty, the chief medical officer, stated in his oral evidence:

“Issues…around mental capacity…are dealt with every day…every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment.”

He acknowledged that

“the more serious the decision, the greater the level of capacity that someone needs to have.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q13.]

However, the Royal College of Psychiatrists said that

“an assessment of a person’s mental capacity to decide to end their own life is an entirely different and more complex determination requiring a higher level of understanding.”

[Sean Woodcock]

During the oral evidence, we heard from three sets of psychiatrists who all cast doubt on the suitability of the Mental Capacity Act for decisions such as assisted dying. Is the hon. Lady’ s amendment an attempt to alleviate those doubts and put that right in the Bill?

[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.

[Jake Richards (Rother Valley) (Lab)]

I am sympathetic to the problem the hon. Lady has identified of people who have a terminal illness as well as other mental health conditions. Instead of rewriting the Mental Capacity Act for this new context, would it not be better to secure safeguards through clause 9, through which further assessments are potentially going to be mandated, if the amendment from the hon. Member for St Albans (Daisy Cooper) is agreed to, for those cases where there is doubt as to capacity? That would add a further safeguard rather than rewriting the established Mental Capacity Act and case law.

[Sarah Olney]

I have no intention of rewriting the Mental Capacity Act. It should stand exactly as it is and be used for the purpose for which it is intended. That is not the intention behind my amendment, which merely proposes that we should assess people’s ability to make the decision and not just their capacity. Many of those who provided evidence demonstrated that merely testing somebody’s capacity to make a decision is insufficient in this case.

[Dr Opher]

We also heard evidence that if we make this more complicated and introduce more terms into the Bill, then there will be less safeguarding for patients. That is why we are all here: we are trying to make this Bill safe for patients seeking assisted dying. Changing it from the Mental Capacity Act will make it less safe.

[Sarah Olney]

I heard Sir Chris Whitty in particular say that it would be preferable to have a more straightforward Bill that did not have too many bureaucratic hurdles for people to overcome. That was why he was keen for the Mental Capacity Act to be retained. However, I tabled the amendment precisely because, when people are thinking about whether assisted dying is an appropriate decision for them, I do not think that it is safe for them to be judged merely on the basis of their capacity. It is by no means my intention to increase bureaucracy; I am merely proposing that the Act is not sufficient in this case.

[Naz Shah]

Three psychiatrists gave evidence to the Committee in person: Professor Allan House, Dr Annabel Price, of the Royal College of Psychiatrists, and Professor Gareth Owen. All expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. Does the hon. Lady agree that we should place great weight on the opinion of psychiatrists when assessing whether the Act should be used to assess applicants for assisted dying? It is a horse before the cart scenario, because the Act was not made for this context; when it was passed, we were not talking about the ability to choose to die.

[Sarah Olney]

I agree exactly with the hon. Lady’s point. The Act was not designed for this purpose, and it is essential that we carefully scrutinise whether it should be used in this way.

[Rebecca Paul]

Will the hon. Lady give way?

--- Later in debate ---

[Rebecca Paul]

I welcome the hon. Member’s attempt to improve safeguarding in the Bill, which I agree is currently not at the right level. Does she agree that the Mental Capacity Act assumes in the first instance that, if there is no evidence to the contrary, a person has capacity, and that whether a person lacks capacity must be decided on the balance of probabilities? Unwise decision making does not indicate a lack of capacity, and supported decision making is considered to be acceptable. We need all to be clear that that is what the Act says.

[Sarah Olney]

The hon. Member is absolutely right. That would be another weakness of the Mental Capacity Act being used in this context: if someone is judged to have capacity, they are free to make an unwise decision, yet there is nothing in the Bill to provide a safeguard against people who might have capacity and make an unwise decision because their thinking has been obscured by mental illness, depression or something else.

[Jake Richards]

I have a few questions for the hon. Member. Who does she propose will decide whether a decision by someone who has capacity is wise or unwise? Does she also propose changing the law around patients’ refusing life-saving treatment? Should that be handled under the Mental Capacity Act, as it is at the moment?

[Sarah Olney]

I am grateful to the hon. Member for his intervention, but I am not proposing to change any legislation other than the Bill before us. All the other legislation to which he refers should remain precisely as it is, and for the purpose for which it was intended. He asks who is to say whether someone is making a wise or unwise decision; that is the job of the people who are instructed to provide assessments under the Mental Capacity Act. As was clear from my response to the hon. Member for Reigate, if someone has been assessed as having capacity, there must not be any further interference in their decision-making process, even if there are distinct concerns that that person may be deciding to end their life not purely because of their terminal illness but because they are suffering from depression. There is no other mechanism in the Bill to enable that further safeguard.

[Dr Opher]

I use the Mental Capacity Act almost every week in my work. As Chris Whitty said, in the majority of cases, whether someone has capacity is clear and indisputable. For a narrow proportion of people, it is more difficult to decide. The Bill takes account of that by using a panel to decide on those difficult cases of capacity. I would insist that most cases are very straightforward.

[Sarah Olney]

I have to ask the hon. Gentleman to clarify that. When he says he uses a panel, is he referring to the new amendment that has been proposed? I have not seen it yet and cannot comment on it, and have no idea if it will be adopted.

[Dr Opher]

If we are not sure about capacity, we must refer to psychiatry, so that a specialist organisation can make a more detailed assessment. However, most people do not fit into that category. Most people clearly have not got capacity or have got capacity, so this is a very narrow cohort.

[Sarah Olney]

If I may say so, the hon. Gentleman’s intervention precisely illustrates what other hon. Members were raising as points of order earlier. How can we properly scrutinise the legislation when new amendments are being tabled at the last minute that potentially change the entire nature of the legislation that we are attempting to scrutinise? It is very difficult then to speak about the amendments that have already been tabled.

[Danny Kruger]

Further to that point, the hon. Lady responded to the hon. Member for Stroud, who suggested that a doctor must refer to a psychiatrist in the event of concern over capacity. There is no such obligation in the Bill. There is the opportunity to do so—the second doctor may do so, if they choose—but there is no such obligation. That is something that we could definitely improve.

The hon. Member for Stroud, who is a GP, says that it is always obvious to him when there are issues about capacity. I assume he might think the same about coercion. I wonder if the hon. Lady is aware that one in six older people are subject to abuse—elder abuse. Does she think that the hon. Member for Stroud always spots the one in six of his older patients who are subject to abuse?

[The Chair]

Order. I remind everybody to stay within the scope of what we are talking about, which is capacity.

[Sarah Olney]

On that note, I will probably not respond to the hon. Gentleman’s comments about coercion, but I will pick up on what the hon. Member for Stroud said about using the Mental Capacity Act every week. I think that probably makes him unusual among MPs, if not GPs. I personally have no experience of using the Mental Capacity Act, which is precisely what gives rise to my anxiety. We in this room need to properly understand what the Mental Capacity Act means, yet most of us do not have the experience that he has in applying it. However, we are all collectively responsible for ensuring that the legislation is framed properly. I can only go on the oral and written evidence that we have received, and I am paying serious attention to all those who have said that they do not think that the Mental Capacity Act is sufficient. I lack the direct experience that the hon. Member for Stroud has of those matters, and that is the best that I can do.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

We are discussing the balance of autonomy against considerations such as capacity and coercion. The Mental Capacity Act 2005 has been in existence for 20 years, so it has the advantage of being familiar. Would the hon. Lady agree that if we were to bring in clinical views from different professions, such as from doctors, social workers and psychiatrists, we would have different definitions in place, which would address some of the concerns about different applications?

[Sarah Olney]

That is an extremely wise observation. I regret enormously that there was not more opportunity, before the legislation was drafted, to have those discussions between experts, advisers and others who really know what the Mental Capacity Act means and whether it is sufficient for this purpose. The best that we can do now is reflect on the evidence that we have received. In many ways, that is what I am hoping to address with my amendment: to redefine “capacity” as “ability”, to transfer the responsibility for defining how ability should be assessed under the Act to the Secretary of State for further analysis and consultation, and then for that to be laid out properly.

When assessing people’s ability to make the decision, we want to take into account their ability to understand, retain, use and weigh information, and to communicate the decision. That will still be at the heart of an assessment of whether an individual is making the decision for the right reasons. A whole range of things might affect a person’s ability to make the decision. I have mentioned many times mental disorders such as depression, which is more common in people nearing the end of their life. Delirium, which is common in people with advanced illnesses, needs to be assessed. There is the complexity of people who have a physical terminal illness alongside a mental disorder; I think particularly of people suffering from an eating disorder, which is primarily a mental health condition but clearly has physical health implications. If the mental health condition is not treated or is resistant to treatment, the physical manifestation of the eating disorder can quickly become a terminal illness. That is a really important point that we need to reflect on.

The feelings of hopelessness that may come alongside a diagnosis of terminal illness may affect a person’s ability to weigh information. Anxiety can amplify their fears of future suffering, and types and doses of medication can affect capacity. All sorts of people can suffer vulnerabilities from external factors such as the lack of realistic alternatives like palliative care services; overt or implicit coercion; personal losses including bereavement; poor housing; financial hardship; and loneliness and social isolation. Understanding and responding to those vulnerabilities is at the centre of suicide prevention, but absent from the Bill.

We have to remember that the Bill would apply to people who are said to be within months of death but may not be, to those who may die within months but otherwise have a very good quality of life, and to people whose trajectories to death vary greatly. In his written evidence, Professor Allan House states that

“careful inquiry is justified because a statement about wanting to end one’s life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others. Simply checking mental capacity and asking about coercion is not adequate.”

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I understand the concerns my hon. Friend is raising about assessing mental capacity. Does she acknowledge that throughout this process mental capacity will be assessed not once but multiple times? What does she say to that?

[Sarah Olney]

I say to that what I have been saying throughout: a test of mental capacity is not sufficient for this Bill. For example, the Royal College of Psychiatrists states that the Mental Capacity Act

“is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of”

for decisions relating to assisted dying or assisted suicide—

“and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”

I believe that what the Royal College of Psychiatrists means by “novel context” is that no legislation of this type has been framed before and we do not have any precedent to guide us in terms of what an appropriate determination of capacity might be.

[Dr Opher]

I apologise to the hon. Lady for my continued interruptions, but I want to put across some important points. In our medical system, the Mental Capacity Act is currently used to test capacity in cases of withdrawing life support. Does the hon. Lady not agree that that is on the same level as assisted dying?

[Sarah Olney]

I have a suspicion that the hon. Gentleman may have made that point already in one of his many interventions. Withdrawing treatment is not the same as someone making an informed wish to have their death assisted. That is why we need to be very careful about considering whether the Mental Capacity Act is appropriate for that kind of decision. That Act is being used in a way it was not designed for. To use this definition of “capacity” is to accept the premise that this is just like any other treatment option and not qualitatively different, and fails to recognise the complexity and gravity of the decision.

The Bill also fails to consider that there may be a risk of assessor bias—that sometimes it may well be that a doctor who makes an assessment may well have their own views about the suitability of assisted dying as an option for that particular patient. They may be in favour of it, or they may be against it. If that were to sway them towards making an assessment against capacity, that could have lots of serious implications for the patient.

I have proposed amendment 34 because I think it is the best way forward at this stage, given the variety of evidence we have had and the real difficulty for us in this room of making an appropriate determination of the extent to which the Mental Capacity Act’s use may be modified for this purpose, or of coming up with something entirely new. I think the best way forward is to give the power to the Government—to the Secretary of State—to define the term “ability” in relation to this legislation at a later date.

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

With respect to the hon. Member for Richmond Park, I do not support her amendments, which seek to replace the references in the Bill to the Mental Capacity Act with the concept of “ability”. First, medical practitioners already know, regularly use and well understand the Mental Capacity Act 2005. As a result, as Professor Chris Whitty said in evidence, where practitioners conduct such an assessment of an individual separately, they are usually in agreement in their decisions about the outcome in relation to that individual. That was also mentioned by my hon. Friend the Member for Stroud.

Secondly, the term “ability”, unlike mental capacity, is not an existing concept in law that we can draw upon in the context of complex medical decision making about consent to medical treatment. I therefore do not accept that it is a low bar.

[Sarah Olney]

Will the hon. Lady give way?

--- Later in debate ---

[Dr Tidball]

I will give way to the hon. Member for Richmond Park, who asked first.

[Sarah Olney]

The hon. Lady has moved on considerably from the point that I was going to make, so I took it that she was not going to take interventions. Although I would have liked the opportunity to respond to some of her points, I have kept my counsel. Since she has now given way, I want to make something of a point of order. The hon. Lady mentioned that she thought my use of the word “ability” was ableist, and I want to put on the record that I had absolutely no intention of it being interpreted in that way. I meant no offence, and I hope that the word would not have been considered in such a light. If that caused any offence, I apologise. I hope that the general meaning of the word “ability” is well understood in this context.

[Dr Tidball]

I am grateful to the hon. Lady for making that statement. That is not the assumption. As I will say later, the term “ableism” is very much grounded in a deficit model of disability, which assumes that somebody is not capable of doing something themselves—for instance, making important decisions—whereas the Mental Capacity Act starts from a different perspective: it presumes that the person will have the ability to do something until proven otherwise. That is why I feel that the concept of ability does not align well with what is needed in understanding and providing autonomy to people making very difficult decisions at the end of their lives.

--- Later in debate ---

[Dr Tidball]

I do not have a list of the case law in front of me—I am sure it will be possible for that to be found for my hon. Friend—but it is done regularly. The Mental Capacity Act is used regularly in decisions about the withdrawal of life-support treatment. That is the case, and she is welcome to search for the case law.

[Sarah Olney]

The hon. Lady talks about the four tests and parts of the Mental Capacity Act; the point I was making was that we want to retain elements of the Act, although using it in its entirety is problematic in this context. The four functional tests about whether someone is capable of making a decision absolutely should be retained—as she said, that is well tested, it works well and people understand in a court of law exactly how to apply it—but some of the other elements of the Mental Capacity Act are problematic. That is why I seek to redraft “capacity” to “ability”—I accept that that might be a problematic word, but I hope the hon. Lady will take on board my earlier comments—and that is what is important. The hon. Lady is saying we should not take out those bits of the Mental Capacity Act that are valuable and important, and I agree.

[Dr Tidball]

I am pleased to hear the hon. Lady’s agreement. As someone who has worked in this space for a long time, I say that if she does not want to have the impact in law of putting in place a concept that would be ableist and take a deficit model of disability, we need those five principles that are already embedded in the Mental Capacity Act. We also need the stringent two-stage test, the second stage of which has the four elements that I set out. Only then can we be certain that we are approaching the paradigm of this complex and important decision making as one where we understand the autonomy and best interests of groups of people we all wish to best protect.

--- Later in debate ---

[Dr Shastri-Hurst]

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

[Sarah Olney]

I just want to probe the hon. Member on the capacity to make a future directive. Is he saying that, under the terms of the Bill as drafted and its reference to the Mental Capacity Act, it would be possible to say, “I may not be eligible now—I may not even be suffering from a terminal illness—but at some future point, because I have capacity today to make this decision, I should like to choose assisted dying”? Would that decision then be honoured at that future date, without any further intervention or assessment?

[Dr Shastri-Hurst]

The hon. Member makes an interesting point, which I had already considered; in fact, I have tabled a new clause that would address it. It is not grouped with the amendments now before the Committee, but I will touch on it, if I may.

There is an argument that, if an individual with an advance directive has gone through the two-stage test in the Bill and then loses capacity, the advance directive should hold weight. My new clause 6 would deal with that point. Sections 27 to 29 of the Mental Capacity Act deal with exclusions from advance directives, including issues around voting rights, marriage rights and Mental Health Act implications. There may be a mechanism, for example, to exclude an advance directive that deals with assisted death, either through the Bill or through an amendment to the Mental Capacity Act. But I do not disagree with the hon. Lady; she raises an interesting point.

--- Later in debate ---

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

rose—

[Sarah Olney]

rose—

[Dr Shastri-Hurst]

I give way to the hon. Member for Richmond Park.

[Sarah Olney]

I am conscious that the hon. Member for Ipswich sought to intervene before me, but may I press the hon. Member for Solihull West and Shirley slightly on his point? When I asked Professor Sir Chris Whitty during oral evidence whether there could ever be a defined list of conditions that he would define as terminal, he was very clear that there could not be. Someone may suffer from a range of conditions. Most people who develop cancer survive, so cancer is a terminal illness, but not for everybody.

The question of what is and is not a terminal illness is quite contested; it is not clearcut. As the hon. Member for Bradford West says, it is quite possible that diabetes could be a terminal illness if someone refuses treatment for it. I am not entirely clear why the hon. Member for Solihull West and Shirley is saying that it is clear from the legislation what is and is not a terminal illness. As we heard in oral evidence, it is not clear.

[The Chair]

Order. I remind Members that the Committee will discuss terminal illnesses, and extending the list relating to terminal illnesses, under a later clause. Let us remain in scope this morning and continue the debate on the amendments before the Committee.

[Dr Shastri-Hurst]

I will keep my answer very brief by saying that I will return to hon. Lady’s point when we come to the clause on terminal illness, when perhaps I can elucidate, improve and work on my responses in a way that is conducive to understanding.

[Sarah Olney]

I look forward to it.

[Dr Shastri-Hurst]

I am aware that the hon. Member for Ipswich is waiting to intervene.

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

Sarah Olney Excerpts

Tuesday 11th February 2025 Public Bill Committees

[Stephen Kinnock]

The Government choose when to bring forward an impact assessment based on the passage of the Bill through the House. We have had reports today about a very substantial amendment to clause 12 that may well be brought forward by my hon. Friend the Member for Spen Valley, for example. It is not possible for the Government to conduct and publish an impact assessment when quite significant changes are being made.

I also gently point out to the hon. Member for East Wiltshire that this is not a Government Bill; it is a private Member’s Bill. It is also worth noting that it is unprecedented, as far as I know, to have oral evidence sessions for a private Member’s Bill, so we are already on relatively uncharted territory. It is also relatively uncharted territory to have, on a Bill Committee, Ministers who are neutral because the position of the Government is neutral. But that reflects the fact that this is indeed uncharted territory, so that is where we stand.

The hon. Gentleman made a point about our own positions on the subject; I speak also for the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green. It is a matter of public record that I supported the Bill on Second Reading. It is also the case that we vote, as members of the Committee, on the basis of our conscience because this is a matter of conscience; that is why the Government are neutral on it. There is no whipping from the usual channels.

At the same time, we are articulating the position of the Government. The hon. Member for East Wiltshire asked how we come to that position. It is through the usual process of engaging with officials and experts in the field, and through taking into account all the considerations that the Government need to take into account for the operationalisation of the Bill. The Government then come to a view, and that is the view that I express when I am on the Committee.

[Sarah Olney (Richmond Park) (LD)]

The Minister says that the Government have made their own choice about when to do the impact assessment on the Bill. Does he not accept that it would have made sense to have done it before the Committee stage? Then, any evidence that the assessment threw up could have given rise to amendments tabled during the Committee stage—that would have made it an appropriate time to have done the impact assessment. The impact assessment could then always have been updated depending on how the Bill was then amended during Committee.

[Stephen Kinnock]

The hon. Member makes an interesting point. I simply reiterate that this is a very dynamic Bill Committee; I believe that 362 amendments have been tabled. Given the Government’s focus on establishing the Bill’s implementability, the coherence of the statute, the legal dimensions and the complexity of what we are dealing with, we took the position that it was better to wait for the Bill to clear Committee stage before producing an impact assessment. To do otherwise could have involved a large amount of second-guessing based on radical changes that might well have come out of the Bill Committee. I reiterate the logic of that sequencing.

On the point about the established legal framework, which clinicians have been applying since 2007, “capacity” would still be used for other decisions about care and treatment.

I turn to amendment 202, tabled by my hon. Friend the Member for Spen Valley on the advice of the Government. It ensures that the assessment of “capacity” is utilised by the assessing doctor, and corrects a typographical error in clause 9 to ensure that an assessment of capacity will apply consistently throughout the Bill. As I said earlier, how and whether the law on assisted dying should change is a matter for this Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee when considering potential changes put forward.

--- Later in debate ---

[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.

--- Later in debate ---

[Stephen Kinnock]

I thank my hon. Friend for that intervention. My understanding is that it is termed as a treatment under the law. The Government do not take a view on the semantics of the word; my understanding is that that is how it is classified under the law.

[Sarah Olney]

It is really important that we establish whether this will be defined as a treatment or indeed as something quite distinct in law. My understanding is that the word “treatment” should never apply to assisted dying. I would be grateful for the Minister’s clarification.

[Stephen Kinnock]

I apologise; I think I misunderstood the intervention of my hon. Friend the Member for Bradford West, so my comments were not clear. I meant the treatment of this matter under the law. As I said, the justification test requires that the treatment in question is a proportionate means of achieving a legitimate aim. That means the way in which the matter is treated under the law. That is what I meant; I think we got our wires crossed.

Finally, let me address amendments 356, 357 and 358, whose purpose is to exclude those who are homeless within the meaning of section 175 of the Housing Act 1996 from the definition of a “terminally ill person”. The effect of amendment 356 would be to amend the definition of a “terminally ill person”, as set out in clause 1 of the Bill, to expressly exclude a person who, notwithstanding that they met all the other requirements set out in paragraphs (a) to (d) of subsection (1), was homeless within the meaning of section 175 of the Housing Act 1996.

Amendments 357 and 358 seek to make consequential amendments to clause 7 on the first doctor’s assessment and clause 12 on court approval. These amendments would require the co-ordinating doctor and the court to be satisfied that, in their opinion, the person was not homeless within the meaning of section 175 of the Housing Act 1996 before making their statement or declaration to allow the person to proceed to the next stage of the assisted dying process.

Article 14 states that the rights set out in the ECHR should be secured for everyone without discrimination on any ground. This amendment engages article 8 on the right to respect for private and family life. Making those who are homeless ineligible for assisted dying would lead to a difference in treatment that will need to be objectively and reasonably justified. The justification test requires that the treatment in question is a proportionate means of achieving a legitimate aim.

I hope these observations may be helpful to Members in considering these amendments and making a determination about who should be eligible for accessing assisted dying services, should the Bill pass.

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

Sarah Olney Excerpts

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.

[The Chair]

Pat, I think you wanted to say something.

Pat Malone: Yes. My sister died under the Swiss method, which meant self-administering a cup. She had motor neurone disease, and she was slowly losing the use of her limbs. She went earlier than she needed to because she wanted to be sure that she would be able to swallow and lift her arm. She could probably have put it off for some months—an indeterminate period—but she died before she needed to in order to be sure that she could self-administer.

[Sarah Olney]

Q The Chair has given me permission to ask a very quick follow-up, Pat, since you mentioned that. I am really sorry to ask this, but do you think that if it had been administered by a doctor, she would have chosen to live for a little longer?

Pat Malone: I cannot speak for her, but there were many, many problems. Bizarrely, the last package of documents that she sent to Dignitas got caught up in the postal strike, and they were all irreplaceable original documents. I do not know if you remember, but around that time—this was the winter of 2022-23—there was a postal strike, and it particularly affected international mail. For nine weeks, the documents were held up in a sorting office, and they could not find them. She was getting more and more concerned, because her horror was that she would miss that deadline. In actual fact, Dignitas agreed that in the final analysis she could hand carry the last of the documents she needed when she came to Switzerland, and she was still able, but her horror when she thought she was going to miss the bus was quite palpable. Yes, if a doctor had been able to do it, she might well have chosen that option.

[Sarah Olney]

Thank you for answering that.

[Dr Opher]

Q I have been fascinated by this discussion, so thank you all. It strikes me that we have spent a number of days looking at the other end of this, if you like—coercion and capacity and that sort of thing—but I am concerned that we had a judge with Parkinson’s who would not be allowed through this, like your sister with MND. I just think we should consider as a Committee whether we need to make any amendments on these things, and also on self-administration. I wondered whether you thought we should widen the Act. I presume you have read some of it, at least.

Pat Malone: As I mentioned to Mr Kruger, I am loath to meddle in any way with the Bill. I think that as it is the Bill is the best we can do at this time.

--- Later in debate ---

[The Minister of State, Ministry of Justice (Sarah Sackman)]

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

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

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

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

[Sarah Olney]

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

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

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

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

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

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

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

[Dr Tidball]

Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill.

Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion.

For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about “do not resuscitate” or “do not treat” decisions, and they were not being properly prepared for or supported in those discussions. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.

Also, building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.

On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.

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

Sarah Olney Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Lewis Atkinson]

Q I have one follow-up on that. At the moment, we are aware that there are instances across the NHS every day where people make decisions around refusing the treatment that would be required to prolong their life. Doctors, nurses and the healthcare team would be involved in assessing capacity and coercion around those cases. Can you tell me a bit about any learnings from that, about the levels of skill required in the current practice around refusing lifesaving treatment, and about how that might be taken into account in the Bill?

Professor Whitty: You are absolutely right: it is a completely normal part of medical and wider nursing, and other practice, but particularly medical practice, to consider issues of consent and capacity. It can be that someone says they do not want treatment that is clearly going to be lifesaving. A very well-known example is that of Jehovah’s Witnesses, who choose not to have blood products. If they are bleeding heavily, that is an issue that could lead to the end of their life. Provided they understand that and they have capacity, that has to be respected.

The alternative way—the other thing that doctors have to do—is to give people advice before they have major operations, chemotherapy or other drugs that may in themselves lead to the end of their life, but which also may lead to a benefit. Explaining to people the risks and benefits, including the fact that they may lose their life as a result of the next stage—if someone is at high anaesthetic risk, that is not a trivial risk sometimes with operations—is a very standard part of medical practice that you do from the point that you qualify. Obviously, as people get more senior, they tend to be more experienced in it—and, as with most things, if you get more experience, you generally get better at it.

[Sarah Olney (Richmond Park) (LD)]

Q Professor Whitty, the definition of “terminal illness” is attracting some attention. Some people say it is difficult to define a terminal illness. Would it improve the Bill if we had a specified list of illnesses that would apply? Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?

Professor Whitty: If I am honest, I think it would be extremely difficult. If I may, I will explain why, because it is a really important question. Let us take cancer. For the great majority of people with the majority of cancers that are diagnosed tomorrow, the doctor who is seeing them will say, in all confidence, “You have cancer and I expect you to be alive not just next Christmas, but for many years to come.” The fact that they have cancer is not in itself a demonstration that they are going to die. In fact, the majority will not. Almost 80% of people with breast cancer diagnosed tomorrow will still be alive 10 years later, for example.

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, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to a death at some point in the foreseeable future. Exact timings are tricky—we might want to come back to that. 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.

[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 ---

[Dr Opher]

Q In some legal medical situations, you need to be five years post training before you can have a view. Is that something you would have in both of these practitioners, or is that not necessary?

Dr Green: We did not take a view on that. We thought that training and experience was more important.

[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.