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

Kim Leadbeater Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Sarah Olney]

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

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

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

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

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

[Kim Leadbeater (Spen Valley) (Lab)]

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

[Sarah Olney]

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

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[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.

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[Rebecca Paul]

It transformed the quality of life of British citizens at a time of mass unemployment and widespread slums, ensuring free healthcare, in the words of Beveridge, from cradle to grave. The provision of healthcare free at the point of delivery was life-changing and life-prolonging. Although it is far from perfect, we have seen time and time again that as a country we can be very proud of the NHS.

The National Health Service Act 1946 came into effect on 5 July 1948, as a direct consequence of the Beveridge report. Section 1 of the Act states:

“It shall be the duty of the Minister of Health…to promote the establishment in England and Wales of a comprehensive health service designed to secure improvement in the physical and mental health of the people of England and Wales and the prevention, diagnosis and treatment of illness”.

It was set up to help people to get better and live healthy lives, and to give hope in situations where otherwise there would be despair. It was lifesaving and life-changing. New clause 36 turns all that on its head. Subsection (4) states that:

“Regulations under this section may for example provide that specified references in the National Health Service Act 2006 to the health service continued under section 1(1) of that Act include references to commissioned VAD services.”

If this new clause passes, the founding principles of the NHS will be monumentally changed to include helping eligible people to commit suicide. That is what it does.

I want to be really clear that it is entirely possible to support assisted dying—to want to ensure that a small group of people, whom palliative care cannot help, have that assisted dying option—but not to support this new clause, which forces provision of the service through the same channels as normal healthcare. Assisted dying is not a medical treatment or a healthcare service and accordingly there should be a degree of separation.

We should be incredibly cautious about incorporating the service into the NHS. It will forever change the relationship between doctor and patient, breed mistrust and fear, discourage vulnerable groups from seeking the healthcare they need and fundamentally violate the Hippocratic oath. Dr Catherine Day, a senior partner of a large GP practice in Coventry, states:

“Trust lies at the heart of the doctor patient relationship. I believe this trust will be shattered if patients consider that their GP…may think that they should end their life and stop being a drain on our NHS.”

Siwan Seaman, a palliative care consultant said:

“How could a terminally ill patient trust a doctor if they know that the doctor was prescribing medication to the patient in the next bed in a bay or cubicle with the intention of ending their life. Letting these assessments take place alongside other NHS services will irreversibly impact on patients’ trust in healthcare professionals and negatively impact our therapeutic relationship with patients as doctors.”

[Kim Leadbeater]

If the hon. Lady is saying that she would not want to see assisted dying services within the NHS, then where does she think they would sit? Would she support my hon. Friend the Member for Shipley’s suggestion that this should be done by the voluntary sector and charities, or would she suggest the private sector?

[Rebecca Paul]

It is important that there is a degree of separation, but I would say to the hon. Lady that it would have made more sense for her to put forward a proposal that we could evaluate, assess, and identify the upsides and downsides of. It would be much easier for me to then come up with suggestions. It does not make sense to ask me, “What is the solution and how would you do this?”, and for me to lay out the many different ways that this could be done, without having first laid a proposal in front of me.

[Kim Leadbeater]

There is a clause that I have laid before the hon. Lady—that is what we are discussing. I will come on to that in my comments. Since she is clear that she does not think this sits within the NHS, she must have given consideration to where she thinks it should sit, if it were to come into effect.

[Rebecca Paul]

I will come on to some of that, and it goes back to my belief that there should be a degree of separation. I think it should be separate from normal healthcare services and there are multiple ways that we could do that. I regret that we are not specifically debating the various different options, with a proposal in front of us detailing exactly how it would work. I am assuming, from the new clause put forward, that the proposal is for this to go through the NHS as healthcare; that is the only assumption I can make based on what is in front of me in this Bill, because there is no other detail to give me any other impression.

Sarah Davies, a consultant respiratory physician in north Wales, argues for a separate service so that ordinary NHS care is not associated with assisted dying. She said:

“It is already my experience that patients and their families are anxious about limiting treatment when they are dying. Many people believe that symptom control medication, such as those delivered in a syringe-driver to aid symptom control amount to hastening or bringing on death. This perception can hinder the patient’s acceptance of medications which can afford significant alleviation of distressing symptoms.”

I have raised my concerns about providing an assisted dying service alongside and in conjunction with day-to-day healthcare many times over the last few weeks. I think it is a massive mistake both for patients and healthcare staff. It blurs the lines of what a treatment is, increases the risk of bad decisions and, as we heard so powerfully from Dr Jamilla Hussain, it will discourage some of the most vulnerable groups from seeking essential healthcare. We have received so much evidence and it is really important that we take it on board, so I will be quoting some in my speech.

Dr Green of the BMA said:

“It should be set up through a separate service with a degree of separation. We believe that is important for patients, because it would reassure patients who may be anxious about the service that it would not just be part of their normal care… It would reassure doctors, because doctors who did not want to have any part would not feel that it was part of their normal job, whereas the doctors who wanted to go ahead would be assured of having support, emotional support and proper training.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 45, Q32.]

In oral evidence, Professor Preston argued for a separate system and pointed to the Swiss example. She said:

“In covid, we did research in care homes, and there was real concern about ‘do not resuscitate’ orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things”.

She went on to talk about the Swiss system, also being adopted in Germany and Austria, which seeks to

“protect these people by keeping it one step removed”

from normal healthcare. She said:

“Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 246, Q317.]

I therefore support amendment 525, tabled by my hon. Friend the Member for East Wiltshire, which would amend clause 32 in order not to allow the provision of the assisted dying service to be done through the health service. That would ensure that much-needed degree of separation. In light of what the Bill’s promoter has said, I recognise that there are different ways to do that; I am very open to those different ways, but I need to see that degree of separation from normal healthcare. I also support new amendment (a) to new clause 36, also tabled by my hon. Friend, which does the same thing.

Let me come to the other amendments in this group. Amendments 537 and 528, tabled by the hon. Members for Shipley and for Richmond Park respectively, are important to debate—we have had some good debate on them this morning—as they raise the different ways of delivering an assisted dying service. I have been listening closely to the points made. Amendment 537 would limit the provision of an assisted death to charities rather than to the NHS, and conversely, amendment 528 would limit provision to public authorities only.

I do not have the answer on the best way to do this, and that is why I regret that a royal commission has not been set up to properly investigate and evaluate all the options and recommend the best way forward. Instead, we are here without all the relevant information and expertise available to us, trying to land on the best way to do it. That is not the way to make such an important decision. I can tell the Committee, however, that—like many others, including my hon. Friend the Member for East Wiltshire—I have huge reservations about delivering such a service through the NHS alongside normal healthcare.

I agree with much of the evidence that has already been cited: there should be a degree of separation. The BMA said that assisted dying could be part of the NHS, but should be outside existing care pathways and separate in some way:

“Our view is that assisted dying should not be part of the standard role of doctors or integrated into existing care pathways—it is not something that a doctor can just add to their usual role… The separate service could take the form of a professional network of specially trained doctors from across the country who have chosen to participate, who come together to receive specialised training, guidance, and both practical and emotional support. They would then provide the service within their own locality—for example, in the patient’s usual hospital, or their home. Or it could be a combination of some specialist centres and an outreach facility.”

In its written evidence, the Royal College of General Practitioners also proposed a separate service:

“The establishment of a separate service which covered every stage of the process would ensure healthcare professionals of multiple disciplines (including GPs) who wanted to do so could still opt in to provide assisted dying, but this would be arranged through a different pathway.”

I agree with both bodies that the service should be separated out in some way. It is now apparent that my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer), whose amendments would have created an assisted dying agency, was on the right track. I regret that the Committee did not explore his ideas in any real detail during our proceedings.

We received important written evidence from Robert Twycross, a pioneer of palliative care who sadly died in October, but had given his friend Ariel Dempsey permission to submit it. Dr Dempsey writes:

“Twycross recommends a de-medicalized model in which AD is a separate service, delivered outside of healthcare practice. He argues for a standalone Department for Assisted Dying, separate from the NHS. He writes, ‘Data indicate that the primary reason for a persistent desire for AD is to relieve distress over a perceived loss of autonomy and to experience a sense of personal control over the circumstances of their dying. These are not medical reasons. Thus, for patients fulfilling the legal criteria, a separate AD service should be established. Indeed, this would be the best way to prevent a corrosive effect on medical practice generally.’ ‘Given the widespread disquiet felt by doctors, a law with minimal medical involvement would be the most equitable.’ He suggests, ‘One way to achieve this would be for [AD] to be delegated to a stand-alone Department for Assisted Dying, completely separate from the NHS and with its own budget. Victoria almost achieves this with its combination of Care Navigators, mandatory training for participating doctors, and a separate Voluntary Assisted Dying Statewide Pharmacy Service.’

Twycross emphasizes that hospice and palliative care must be a ‘sanctuary’ for patients – ‘an assisted dying free zone. Even in the absence of AD, some people decline referral to palliative care despite unrelieved pain and/or other distressing symptoms because they fear they will be “drugged to death”…This unfounded fear will most likely be enhanced if AD is legalized, particularly if palliative care is involved’ and result in an overall increase in suffering.”

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

Diolch yn fawr—thank you very much, Ms McVey. I rise to speak to clause 32 stand part and to new clauses 36 and 37.

It is gratifying that everybody on the Committee has taken so seriously the need to recognise where the powers lie in relation to the Senedd in Wales and Welsh Ministers, and Westminster and the Secretary of State. The evidence we heard from Professor Emyr Lewis is that clause 32 would contravene the Sewel convention by giving the UK Government powers of regulation to provide an assisted dying service in the NHS in Wales.

I am very appreciative of the way in which we have discussed the matter. This is, of course, a private Member’s Bill; by the nature of the subject it is discussing, it is unprecedented since devolution in 1999. As we talk about constitutional matters and the Sewel convention, it is important to remember what we are doing as a Bill Committee: we are trying to make sure that we tease out the questions about the environment in which all these services will be provided, and that we are giving people who are at the most vulnerable time in their life the appropriate protection and the appropriate autonomy. That is what we should always be balancing.

New clause 36, which relates to England, and new clause 37 certainly appear—I use the word with as much generosity as I can—to clarify the responsibilities as between Welsh Ministers and Secretaries of State. My amendments would go through the Bill clause by clause and would then insert a definition into clause 40, rather than making a broad statement as the new clauses do.

Although we have debated the content of new clause 36, I believe strongly that it is not for us in Westminster to specify how Welsh Ministers may make provision for those areas over which they have responsibility. It is appropriate that we have a debate, because that raises awareness of the potential for a legislative consent motion or motions. It is appropriate to have that discussion; it is also appropriate to be aware that there may be a discussion about the commencement date and the implications, which we will address in the debate on a later amendment.

I am looking particularly at Wales, and new clause 37 would do what my amendments were attempting: it would give us future-proofing. The powers that have been granted to the Senedd in Wales are considerably different, and lesser in their extent, than those that have been granted to Scotland and to Northern Ireland. That may well change in future, and new clause 37 would allow for that.

I put it on the record that I await further discussions between Welsh Ministers and the hon. Member for Spen Valley, although I understand that some have already taken place. It is already on the record that UK Ministers, the Secretary of State, the hon. Member for Chesham and Amersham and I will have further discussions as we move ahead. There will be opportunities on Report to do what the Committee is trying to achieve, which is to future-proof the legislation and ensure that it works as effectively as possible.

I welcome the changes that the new clauses would make. Clause 32, as it stands, does not recognise the constitutional arrangements of the United Kingdom, and it is important that we do that.

[Kim Leadbeater]

I thank the right hon. Lady for her constructive and collegiate approach to the Committee, particularly on devolution. I have contacted the Welsh Government and am keen to speak to them when Committee proceedings have finished. They have said that they are happy to do that. I am keen to continue to work with the right hon. Lady and other colleagues on devolution to ensure that we get the Bill right for the people of England and Wales.

[Liz Saville Roberts]

I appreciate the hon. Lady’s comments. I think there is a lesson to be learned. I understand that the legislation is unprecedented in coming through the private Member’s Bill route. After this, we will have to think about how we deal with such legislation because we are feeling our way. I appreciate the opportunity to work with the co-operation of colleagues on something for which there is no road map, but I fear, although I also appreciate, that we are making the road map as we go.

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[Naz Shah]

I thank the hon. Member for his intervention. I have observed two things this morning. First, the reality has really hit home. Are we going to look at the amendment regarding local authorities providing the service? Are we excluding private providers? Are we excluding big firms? A new service has to be designed. Will it be two organisations or one? How will the Bill be delivered? We do not even have that before us, and that concerns me deeply.

[Kim Leadbeater]

As my hon. Friend the Member for Sunderland Central said, it is common practice in healthcare and in the NHS for services to be commissioned in a range of ways. We would not put such a level of detail in the Bill, but it would be normal practice for the Secretary of State to do that commissioning work. My hon. Friend the Member for Bradford West has her own experience of that, I imagine.

[Naz Shah]

Absolutely. As a former commissioner, I am very familiar with commissioning; I commissioned millions of pounds’ worth of services across Bradford when I was in the NHS. The difference is that that was under Government Bills that had pre-consultation, impact assessments and a model that was debated. None of that has happened with this Bill. I agree that in an ideal world the process set out in new clauses 36 and 37 would be the right one, but without an impact assessment and a consultation, I am afraid that I have been left really disheartened.

I am disheartened about something else, too. I thank all Committee members, regardless of the points that they have or have not made, for the way in which the debate has been conducted, both before and during our sittings. On a few occasions, hon. Members have questioned other Members’ reasons for tabling amendments—but to suggest, as has been suggested today, that we are scaremongering, when we are actually going through the detail, is something else.

I am afraid. This is not me scaremongering; this is me being afraid for women who are anorexic. This is a gendered Bill. There are amendments that I support because I want to strengthen the Bill. I genuinely do not think that the Bill, as it stands, has that strength. I feel disheartened that we are talking about what is going to happen on Third Reading and potential votes, when we should be concentrating on the amendments on the selection list.

I oppose the new clauses tabled by my hon. Friend the Member for Spen Valley, which would replace clause 32. As my hon. Friend explained, new clause 36 outlines the powers that the Secretary of State for Health would have over voluntary assisted dying services in England. New clause 37 does the same for Wales, but makes changes that are necessary because health is a devolved power. I will concentrate on new clause 36, as I represent a constituency in England.

Put very simply, if new clause 36 is agreed to, it will give the Secretary of State three sorts of power. First, it will give the Health Secretary powers under subsection (4) to, effectively, change the National Health Service Act 2006. Secondly, it will give the Health Secretary powers to set out regulations about how any service, whether public or private, carries out assisted dying services. Thirdly, the Health Secretary will have powers under subsection (1) to commission assisted dying services. As I understand it, the wording means that assisted dying services could be provided directly by the NHS or by private firms working on contract for the NHS. I will discuss those powers in the order in which I mentioned them.

Subsection (4) of new clause 36 says that the Health Secretary may pass regulations that

“may for example provide that specified references in the National Health Service Act 2006 to the health service continued under section 1(1) of that Act include references to commissioned VAD services.”

To make it clear how the new clause works, I will quote from the subsection of the National Health Service Act 2006 that it would affect. It states:

“The Secretary of State must continue the promotion in England of a comprehensive health service designed to secure improvement—

(a) in the physical and mental health of the people of England, and

(b) in the prevention, diagnosis and treatment of physical and mental illness.”

That Act is an adaptation of the original National Health Service Act 1946, section 1(1) of which states:

“It shall be the duty of the Minister of Health…to promote the establishment in England and Wales of a comprehensive health service designed to secure improvement in the physical and mental health of the people of England and Wales and the prevention, diagnosis and treatment of illness”.

The 1946 and 2006 Acts both give the Health Secretary a very clear set of duties that I think we can all support. Those duties have been the basis of how the NHS has been run for the nearly eight decades for which it has existed.

My hon. Friend’s Bill would give the Secretary of State powers to change the duties set out in section 1(1) of the 2006 Act. I ask my hon. Friend and both Ministers why the Bill needs to give the Secretary of State those powers. The only reason I can think of is that someone who was part of the drafting process has pointed out that the Health Secretary’s current duties might be incompatible with assisted dying.

The Health Secretary has duties to secure improvement in the people’s physical and mental health and in the prevention, diagnosis and treatment of physical and mental illness. Someone could bring a legal challenge on the basis that assisted dying does not fit with that duty, and that challenge might well succeed. I think that, to prevent that happening, my hon. Friend has proposed subsection (1) of new clause 36. If there is any other reason why she has suggested that we should give those powers to the Secretary of State, it is important that the Committee understands and hears it.

What is proposed underlines just how major a change the Bill would make. Since the NHS started operations in 1948, we have had a clear understanding of what it is there for. The 2006 Act is little different from the 1946 Act in that respect. For nearly 80 years, we have had an NHS that is there to improve health and to improve the prevention, diagnosis and treatment of illnesses. The fact that we may have to change that shows us that we are taking a very big step indeed. To make such a fundamental change to the NHS, we should have had the best possible evidence and proper consultation, not three days of witness hearings and then hundreds of pieces of written evidence, often published after we had finished discussing the topics to which they relate. That is nowhere near good enough.

The next set of powers that I want to talk about is mentioned in subsection (3) of new clause 36, which says that the Health Secretary

“may by regulations make other provision about voluntary assisted dying services in England (whether or not the services are commissioned VAD services).”

I absolutely accept that if we have assisted dying services in England, the Health Secretary should ensure that they are properly regulated. That will have to include privately provided services as well as those offered on the NHS. However, I must ask: why does the Bill say that the Secretary of State “may” pass such regulations? The best interpretation I can think of is that a future Health Secretary might decide that private firms should provide assisted dying services directly to paying customers rather than via outsourced NHS contracts. In that case, the Health Secretary would need to provide regulations for those private sector services.

If that interpretation is correct, surely we could have tighter wording. For example, the new clause could say that if the Secretary of State decides to allow private firms to provide assisted dying to paying customers, the Secretary of State must make regulations to govern that. I would welcome clarification on the point, because I know that my hon. Friend the Member for Spen Valley previously accepted an amendment—I think it was amendment 477—