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

Rebecca Paul Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Stephen Kinnock]

One of the fundamental principles of the Bill, which my hon. Friend the Member for Spen Valley has prioritised, is self-administration. It is not for me as a Minister to opine on that; it is simply there in the Bill. Once that fundamental principle is established, it is about defining what “assistance” means, compared with what “self-administration” means. As I was setting out, I think “assistance” can mean things like helping the patient to sit up; it does not mean actually administering the substance to the patient. It is about the dividing line between assistance and self-administration—hence the term “assisted dying”, I suppose, which is very different from the doctor actually administering the substance.

[Rebecca Paul (Reigate) (Con)]

I am going to read subsection (6)(c) again. It says:

“assist that person to ingest or otherwise self-administer the substance.”

I would interpret that slightly differently from the Minister. It talks about ingesting, which suggests the substance entering the body, so I would not suggest that sitting someone up would qualify. That in itself shows that perhaps there is some ambiguity here. The Minister has set out something that I had not read into the Bill. Will he comment further on that?

[Stephen Kinnock]

I will pretty much repeat what I have just said to my hon. Friend the Member for Ashford. There is a dividing line, as the Government see it, between assistance and administration. There is a dividing line between making the patient comfortable, enabling the procedure to take place, and the doctor actually putting the substance into the body of the patient. From the Government’s point of view, simply from the position of having a picture of the process in our mind, that dividing line is clear enough in the drafting of the clause.

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[Stephen Kinnock]

In order to ingest, there has to be self-administration. The self-administration is the precondition for ingesting the substance. That is my reading. I hope that that satisfies my hon. Friend.

[Rebecca Paul]

The Minister is being incredibly patient with our questions. The question from the hon. Member for Ashford raises exactly the point with which I am uncomfortable. To me, the phrase

“assist that person to ingest”

means something else. I am really concerned that it could be interpreted differently from how the Minister has laid it out. I want to place that on the record and raise that issue, which I believe the hon. Member was also raising.

[Stephen Kinnock]

The hon. Member’s concerns are absolutely noted. I completely understand that hon. Members are not comfortable with this, but what I am trying to do is set out the Government’s view on the workability of what my hon. Friend the Member for Spen Valley is seeking to achieve and the basic principles on which that is built.

Amendment 497, on which the Government have worked jointly with my hon. Friend, would amend clause 18(11), which states:

“Where the person decides not to self-administer the approved substance, or there is any other reason that the substance is not used, the coordinating doctor must remove it immediately from that person.”

Under the clause as it is currently drafted, there could be difficulties in relation to the duties of the co-ordinating doctor where the co-ordinating doctor does not know what the person has decided. Amendment 497 seeks to resolve that ambiguity by clarifying that the duty on the co-ordinating doctor to remove the approved substance applies where the person

“informs the coordinating doctor that they have decided”

not to self-administer the approved substance.

I turn to amendment 498. At present, clause 18(11) provides that the co-ordinating doctor has the duty to immediately remove the approved substance where the person decides not to self-administer the approved substance, or there is any other reason that the substance is not used. The amendment clarifies that the duty to remove the substance arises when the co-ordinating doctor believes that the substance will not be used. I hope that those observations have been helpful to the Committee.

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[Danny Kruger]

I hope the hon. Gentleman is right. Nevertheless, one of my concerns about the Bill is that we are leaving enormous areas of clinical practice, and regulated conduct for the professionals involved in assisted suicide, to be performed under guidance that is still to be set out and that it is the job of future Ministers to determine.

I pay tribute to the hon. Gentleman, because he has correctly identified a group of patients for whom the drafted Bill may present obstacles to the fulfilment of their wish for an assisted death. My belief is that the ability to assist will probably cover almost anybody who wants it and has found a doctor who wants to help them, but the hon. Gentleman is right that there are some groups for whom that might be more of a challenge than others. I think the answer we are going to get—it is one made by hon. Members in the debate already—is that technology will fix it, and I fear it will, because I think we are going to find ourselves in a world in which it is perfectly possible for the administration of death to be enabled through some kind of technological device, which somebody with the most limited physical mobility will nevertheless be able to activate.

I fear the insistence that we have on self-administration. Although we can all acknowledge, as referenced in the previous debate, the conceptual difference between administration and self-administration, we do have this idea that we are individuals cut off from each other and that there is an essential gap between us and other people. At the very end of life, though—in the moments that we are considering and legislating for—that distinction is void, because we are intimately connected with other people, as per the clauses that we are debating. I fear that we are going to find ourselves in a world in which a laptop will be set up and even a movement as small as the blink of an eyelid by the patient will be enough to trigger what will be called “self-administration” of the fatal dose.

I oppose this group of amendments, moved by the hon. Member for Harrogate and Knaresborough, because I do not believe in assisted suicide. I do not understand why other supporters of the Bill are not following the hon. Gentleman’s lead, and acknowledging that if we believe in autonomy and assisted suicide, of course we should enable patients to have the final act performed upon them, rather than insisting on this arbitrary distinction that it is possible to insist on self-administration in all cases.

[Rebecca Paul]

It is clear that the hon. Member for Harrogate and Knaresborough is trying to create equity, which we all understand. We need to think about the patient on the one hand, but also the doctors, nurses and medical practitioners involved. Does my hon. Friend agree that we need to think about the obligation and impact of such amendments on them?

[Danny Kruger]

Yes. We discussed this briefly this morning. There is an important consideration about the effect on medical staff involved in the administration of assisted suicide, and we have to make sure that those who do not want to participate are properly insulated from any sort of obligation, which I know is the intention of the Bill’s promoter, the hon. Member for Spen Valley. Nevertheless, I am concerned about the knock-on effect of participation in assisted suicide spreading across a practice. I agree with my hon. Friend that we have to be mindful of the impact on doctors. The more we widen the scope—as logic compels us to do, as the hon. Member for Harrogate and Knaresborough suggests—the more it is about not just discretion, but an obligation on doctors to approve.

We need to think about the conversation that doctors will be required to have with patients who are expressing that wish. If the Bill is widely drawn, as it would be if we were to accept these amendments, there is more opportunity for a doctor to feel compelled to assent to a request.

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[Dr Opher]

I thank my hon. Friend for his experience in a clinical setting. I would remind everybody that in the Bill we are trying to help people die in a comfortable way, and I do not feel it is the Bill’s job to define exactly how we treat nausea or abdominal obstruction and so on. What we would like to do here is ensure that a patient has a pain-free death, and a death that they are in control of.

[Rebecca Paul]

rose—

[Dr Opher]

I will make a little progress and will then take my hon. Friend’s intervention.

On amendment 436, all medical practitioners are required under their code of practice to record any event they come across. I feel there should be better data and I agree with the hon. Member for East Wiltshire that we need to collect data. We are actually very good at doing that in the NHS. Under clauses 21 and 22 there are provisions for the Secretary of State to collect data on complications. I am therefore not sure that particular amendment tabled by my hon. Friend the Member for York Central is necessary. I think I have covered amendment 464, from the hon. Member for East Wiltshire.

On amendment 429, about the doctor being in the same room, I totally understand the anxieties presented by my hon. Friend the Member for Bexleyheath and Crayford, but I feel that whether the doctor is there should be the choice of the family and the patient. There may be some confusion about this, but to me, what the Bill implies—I am interested to hear the Government’s opinion—is that the doctor should deliver the medicine to the patient, check that the patient is willing to take the medicine as per amendment 462 from the hon. Member for East Wiltshire, give the medicine to the patient, and then ask the family whether they want them to be there or in the next room. They need to be available, but do they need to be in the same room? I think that should be the choice of the family.

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[Stephen Kinnock]

My job and that of my hon. and learned friend the Justice Minister is to defend the integrity and coherence of the statute. The concern that we have with the word “complication” is that it is a wide-ranging term and concept, and its inclusion could potentially undermine the integrity of the legal coherence of the Bill and how it could be interpreted in terms of its implementation. I am simply flagging the risk that if the Committee chooses to accept the amendment, there could be a muddying of the waters in terms of its meaning in law.

[Rebecca Paul]

Following on from the point made by the hon. Member for Bradford West, has the Minister taken into account the guidance on private Members’ Bills? It says exactly what the hon. Member has just set out: the spirit of amendments should be taken, and it is for the Government to ensure that the integrity of the statute is respected with the final version. That is to allow a free-flowing discussion and to ensure that we capture everything we need to in the Bill, in the light of the fact that many of us are not lawyers or experts.

[Stephen Kinnock]

Absolutely, if the Committee chooses to accept the amendment, it goes into the Bill. If the Bill gets Royal Assent, it becomes the responsibility of the Government to ensure that the Bill, as passed by Parliament, is implemented in the best possible way.

The hon. Lady is right that the Government’s responsibility is to take on whatever passes through Parliament and implement it to the best of our ability. My job in this Committee is to raise concerns about risks of amendments that could potentially muddy the waters more than other amendments, or more than the Bill as it currently stands. It is a balanced judgment about whether we are better off with the Bill as it currently stands, whether the amendment would improve the Bill, or whether it could lead to concerns about the integrity of the statute if it were included.

[Rebecca Paul]

I thank the Minister for that explanation. I suggest it would also be appropriate for him to set out the changes that could be put in place in order for the amendment to work in that way. To my mind, that would give the true neutrality that he is seeking to achieve. Rather than set out why something does not work, he could set out how it could work in order to deliver the spirit of the change.

[Stephen Kinnock]

I think what I am saying is that the word “complication” contains a multitude of potential interpretations and meanings. The work that would need to be done by the Government to unpack it and understand what it means certainly could be done if the amendment passes, but the Government are saying that, as it stands, it is not clear. The drafting of the amendment is so ambiguous that it causes the Government concerns about its inclusion.

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[Naz Shah]

I rise to speak to amendment 499, tabled by my hon. Friend the Member for Spen Valley. Let me outline what the amendment does and why I believe that it provides an inadequate safeguard. Under clause 19, the co-ordinating doctor may authorise another doctor to provide assistance—meaning that they will help the patient to take the lethal drugs. For clarity, I will refer throughout my speech to this other doctor who may step in to provide lethal drugs as the second doctor.

Under clause 18(4), the co-ordinating doctor must be satisfied of three conditions before they proceed to assist the person to take lethal drugs. Those three conditions are that the person has a clear, settled and informed desire to end their life, has capacity under the Mental Capacity Act 2005, and is not subject to coercion. Implicitly, the co-ordinating doctor can therefore end the procedure if they are not satisfied that those conditions apply. Under clause 19(3), the second doctor has the same duty as the co-ordinating doctor to be satisfied of those conditions before the assisted dying procedure can go ahead.

Amendment 499 would impose a new duty on the second doctor: if they suspected coercion, lack of capacity or lack of clear, settled and informed desire, they would have to inform the co-ordinating doctor. I suggest that the amendment does not take things far enough. It is a very serious matter if any doctor, be it the co-ordinating doctor or the second doctor, suspects coercion, lack of capacity or lack of desire. That means that a very serious mistake may well have been made, and that mistake could lead to someone having an assisted death who should not have qualified for it.

There should be several more safeguards in this part of the Bill. First, let us consider a situation where there was no previous suspicion that a patient had been coerced but where the doctor now suspects that they may have been. There should be a proper system of notification for such cases. It is true that doctors have a duty of care for patients, but it is also true that, given our overstressed, underfunded social care, health and policing systems, difficult cases sometimes fall through the cracks. The Bill should have a clear system for an authority to check back with the social care authorities and a person’s GP to make sure that steps are being taken to protect them from potential coercion. Secondly, the report that the second doctor makes in those circumstances should go to not only the co-ordinating doctor, but the voluntary assisted dying commissioner. Thirdly, when that happens, the commissioner should investigate the incident.

To repeat: if a doctor originally assessed a patient as qualifying for an assisted death, but a second doctor could not support that assessment, that is a serious incident that could lead to the assisted death of someone who should not have qualified for it. That does not mean that the co-ordinating doctor was necessarily at fault—not at all. The co-ordinating doctor will have been taking very difficult decisions under considerable stress. However, it does mean that the proper authorities should investigate the initial assessment, whether it was wrong and, if so, why it was wrong.

We see something similar with the Air Accidents Investigation Branch, which investigates not only accidents, but near misses that could have caused serious accidents. It does not assume fault when it investigates near misses. Often, it finds that there has been no human error. However, it has a statutory duty to investigate serious near misses. That is because the law passed by this House recognises that we need to understand why they happened in order to prevent fatal accidents from ever happening in the future.

For that reason, I do not think that my hon. Friend’s amendment is sufficient to fix the problems with this part of the Bill. I hope we can think about how better to address those problems, but I cannot support the amendment.

[Rebecca Paul]

I rise to speak in support of amendment 408, in the name of the hon. Member for Broxtowe. I also support amendments 499 and 210, in the name of the hon. Member for Spen Valley, and amendment 22, in the name of the hon. Member for Lowestoft (Jess Asato).

Clause 19 states that

“the coordinating doctor may authorise, in writing, a named registered medical practitioner to carry out the coordinating doctor’s functions under section 18…A registered medical practitioner may be authorised under subsection (1) only if…the person to whom the assistance is being provided has consented, in writing, to the authorisation of that practitioner”.

I support amendment 408, which adds that the person must also have been consulted.

I am sure the Committee recognises that, even where someone has basic training and the experience specified, delegating care at the end of life is something that must be done with great care, given the vulnerability of patients. If a co-ordinating doctor has guided someone through this profound and significant process, there are some intrinsic risks that come with delegating the administration of the final approved substance to someone else. I concede that there will be situations where a substitute may be required, but it will not be the doctor that the patient has trusted, confided in and relied on.

A new doctor will of course do the final checks for capacity and consent, but they do not necessarily have any specific detailed knowledge of the patient and may be unable to pick up less obvious cues that someone who knows the patient may be better able to. That gap matters, and history shows that it can lead to problems. The risks of delegation are well documented. If we take the Mid Staffordshire NHS foundation trust scandal in 2005 to 2009, detailed in the Francis report, consultants often delegated tasks to junior staff or nurses without adequate supervision, which contributed to poor care and an estimated 400 to 1,200 excess deaths. Patients suffered from neglect, untreated infections, dehydration and medication errors. That was partly because delegated staff lacked the training or authority to act decisively, and consultants failed to monitor effectively.

In surgical contexts, delegation can also falter. A 2006 Daily Mail report highlighted NHS payouts exceeding £1 million for wrong-site surgeries, where consultants delegated preparatory or operative tasks to trainees or assistants, who then misidentified sites—for example, operating on the wrong leg or tooth. Those errors often stemmed from inadequate briefing or supervision, pointing to a systemic delegation risk. We have to be really aware of this.

Those examples suggest that when consultants delegate, whether to junior doctors or other practitioners, including their peers, things can go wrong if communication breaks down, or if the replacement lacks equivalent expertise or is simply not aware of some of the detailed information. In order to manage some of the risks better, patients must be consulted about who takes over their care, and not just asked to consent after the co-ordinating doctor has decided what will happen.

[Dr Shastri-Hurst]

Given that valid consent requires a voluntary and informed decision, can my hon. Friend set out why that would not involve being consulted on the matter in any event?

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[Rebecca Paul]

I would like to think that that would naturally happen, and we have had lots of conversations where we have said, “In reality, of course this conversation would happen.” But I always like to be belt and braces, and I would like to have these things covered in the Bill. If Committee members are confident that these things would happen anyway, I am not sure there would be any detriment to accepting this amendment.

I want to finish with a question for the Ministers. I have been worried—perhaps unnecessarily—about the lack of photographic identification in this process, and I can see a situation where allowing another doctor to provide assistance could create a risk. Although it might be less of a risk in someone’s home, because it would probably be clear who the person is, I am worried about a doctor in a hospital or clinic being substituted in at the final hour with no photographic verification of the person. At the point where they assist the patient to take the approved substance, how can the doctor be sure that it is the appropriate person if they have not had any involvement with the patient before? I accept, given some of the deep sighs I can hear, that that may be a rare occurrence, but it is worth thinking about. The simple inclusion of a photographic ID check would address some of that risk. I will not go over old ground, but I have been worrying about that.

[Naz Shah]

I rise to support amendment 22, in the name of my hon. Friend the Member for Lowestoft. Before I carry on, I am happy to give my hon. Friend the Member for Spen Valley the opportunity to say whether she will accept the amendment, because my hon. Friend the Member for Lowestoft has had a hat-trick of amendments being accepted around training on coercion.

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[Danny Kruger]

I entirely agree. The regulations need to specify not only what drugs may be approved, but, as the hon. Gentleman suggests, how they should be stored and transported. I would expect that to be part of the package of regulations under the Bill.

As I have stated, I do not accept that we are talking about healthcare here; nevertheless, we are using products that are comparable to health products. The MHRA would need to significantly adapt its work in order to identify the most effective drug to cause what we currently perceive as harm—namely, the death of a patient. I recognise that that would be a significant change of remit and work for the MHRA, but we need to do it. One of the reasons that we need regulation of approved substances is to help ensure that falsified versions of the drug—drugs that do not have a licence for use in assisted dying—cannot enter the market. Such drugs may not be effective and could cause distress to those ending their lives and their families. I would be grateful if the Minister could clarify whether, in his view, clause 20 is sufficient to establish the necessary regulatory regime, or whether further legislation will be needed.

We had evidence from Greg Lawton, and other pharmacists, who wrote to the Committee to suggest that the approved substances would not legally come within the definition of a “medicinal product”, so medicines law, the protections associated with medicines and the MHRA licensing process might not apply. If that is the case, what do we do about it? We need a new licensing regime to ensure that the MHRA is able to properly regulate the substances, or, potentially, another regulatory agency would need to be established to do the job.

The Committee needs to make sure that there is a process that applies to approved substances used for assisted dying. It is not necessarily the case that a product licensed for treating a medical condition could not be used to bring about death—it is not the case that we cannot use any drug that is currently used for genuine health treatment—but it would not be being used as a medicine, so medicines law may not apply to its use for that purpose. There is an ambiguity, and I would be grateful for clarity on it.

The amendments that I am supporting would ensure that the MHRA had approved the drug for the specific purpose of ending someone’s life, and that there was scientific consensus that the drug would be effective for that purpose. The MHRA, in the marketing authorisation for the approved substance, would define the dosage of the drug required to bring about death. It would also ensure that specific considerations and warnings were placed in the product licence.

For example, some patients have allergies to certain drugs. If they decide to end their own life, that should be brought about as a result of the effect of the drug, not an unintended allergic reaction to it. Some patients would not be able to take drugs orally and might need to have the drug administered through a tube into the stomach, so different formulations would need to be available. Some drugs may need to be administered by injection. Patients may be unable to do the injection themselves, as we have discussed. Even if the patient is physically capable, injection techniques require proper training, and that needs to be considered when licensing drugs for assisted dying if the patient is responsible for self-administration.

There will be further considerations when deciding what drugs can be used. Patients will have a right to know what to expect. If they take the drug orally, how long will they have to wait before they die? Will they lose consciousness first? If so, how long will that take? Could there be some side effects or reactions after taking the drug, such as seizures or choking, that the family or carers will have to deal with? Can the drug be taken at home—that relates to the point that the hon. Member for Ashford made—or must it be used in a clinical setting? We have suggested that it could be used at home, so questions about transportation arise. Is a combination of drugs required? If so, in what order should they be taken? What happens if the patient passes out before taking the entire concoction of drugs? Has the drug formulation been optimised for the purpose of assisted dying, so that it reaches maximum blood levels as quickly as possible?

All these sorts of questions are appropriate for medical regulators. The MHRA could ensure that the patient information leaflet, and the warnings associated with it, given with the drug when it is prescribed prompt doctors to think about what drugs are most suitable for the patient and to provide information to the patient about what to expect.

Parliament must have oversight. It must bear responsibility for the kinds of deaths that it approves. Both Houses of Parliament should approve the statutory instrument. To inform that decision, the Secretary of State should provide all relevant information on the likely time to death, and on complications and side effects. When the state is creating a regime that will end lives, there must be maximum transparency and accountability, yet the Bill provides that this will be done by a negative statutory instrument. In other words, Parliament will get a say on the regulations only if the Leader of the Opposition prays against them—that is the process for a negative SI. That is the only circumstance under which the Government would make time for a debate and a vote on a negative SI. Given that this is an issue of conscience, I find it inconceivable that the Leader of the Opposition would want to take a position on it and so pray against it to trigger a proper debate. I think it is highly likely that Parliament would never get a say on this crucial issue because of the use of the negative procedure.

That situation has been recognised repeatedly as being unacceptable. When Lord Falconer introduced his Assisted Dying Bill to the House of Lords in 2014, it too provided for a negative SI power on this matter. The highly respected House of Lords Delegated Powers and Regulatory Reform Committee—we do not have an equivalent Committee in the Commons, but it sits over Parliament—said that it did not consider either the power or the procedure in the Falconer Bill to be appropriate, yet that is the procedure that we are being presented with here.

In 2021, when Baroness Meacher introduced her Assisted Dying Bill to the House of Lords, the Delegated Powers and Regulatory Reform Committee again issued a report, in which it said:

“In the interests of clarity and transparency on such important issues of public policy, the matters that are in due course to be dealt with under clause 4(7) by negative regulations should in our view be spelled out in detail on the face of the Bill from the outset. Accordingly, the Bill should contain a definitive list of medicines, and details of the manner and conditions under which such medicines are to be dispensed, stored, transported, used and destroyed. The power to amend such matters should be a matter for regulations subject to the affirmative procedure.”

We then come to Lord Falconer’s 2024 Assisted Dying for Terminally Ill Adults Bill, which he withdrew following the introduction of this Bill by the hon. Member for Spen Valley. That Bill in part took on that feedback from the Lords Committee. Although it did not provide a list of medicines, it did at least provide that the power to specify the drugs would be through the affirmative procedure.

The Hansard Society, which is non-partisan and neutral on assisted dying, has issued a critical report on this power. It says:

“MPs may wish to enquire why Kim Leadbeater has chosen not to adopt the scrutiny procedure set out in the 2024 bill, but has preferred that proposed in the 2014 and 2021 incarnations of the bill, despite the advice to the contrary of the Delegated Powers Committee.”

I would be grateful to learn from the hon. Lady why she has chosen this procedure.

It might be objected that the list that I am requesting might need to be modified quickly and that the affirmative procedure—having a parliamentary vote—would be an obstacle to doing that. The Hansard Society anticipated that objection. It said that

“this could be addressed by making provision for the use of the ‘made affirmative’ procedure in urgent cases where the Secretary of State wishes to remove a substance from the approved list and is of the opinion that it is necessary to do so immediately in order to prevent adverse medical events or failed assisted deaths. This would mean Ministers could act expeditiously but Parliament would have to debate and approve – albeit retrospectively – the change in the list. Whilst not perfect it would provide more opportunity for oversight than that offered by the negative scrutiny procedure.”

It seems to me that there is no justification for this vital matter to be regulated under the negative procedure. Too much power and responsibility is being given to Ministers subsequent to the passage of the Bill— if that is what happens. My amendment 467 would ensure that Parliament has a meaningful say, through the affirmative procedure, and that a report is published as part of that process setting out the expected efficacy of the drugs that will be used. I hope that the Committee will support it.

[Rebecca Paul]

My hon. Friend the Member for East Wiltshire eloquently covered most of the things I would have said.

We have probably not spoken enough to date about the impact on pharmacists, but we are getting to the point in the Bill where it is really important that we take on board the written evidence and feedback that we are hearing from them. The Royal Pharmaceutical Society said:

“In dispensing a prescription, a pharmacist assumes a proportion of the responsibility for that prescription and therefore must be assured that all legal requirements are in place and that it is entirely appropriate for the patient. The link to the clinical assessment of eligibility criteria is essential and therefore the prescriber should always be one of the assessors. In addition to the usual practice of checking that the prescription fulfils the necessary legal requirement, pharmacists must have full access to the patient’s diagnosis and assisted dying care plan.”

That raises a few valid and interesting points that we need to take on board to ensure that pharmacists can do their jobs in line with the regulations and laws they are subject to, which are ultimately there to maintain patient safety.

I support amendment 466, tabled by my hon. Friend the Member for East Wiltshire, which would ensure that the Secretary of State must be of the opinion that there is scientific consensus that the drug is effective without causing pain. I am of the view that the Secretary of State is probably the right place for that responsibility to sit. One reason for that, which my hon. Friend spoke about, is that I am not sure that the MHRA is the right regulating body for that. I am no expert on this, and I am open to hearing the debate, but the MHRA’s remit covers medicines and healthcare products, so there is a question about whether legally the responsibility falls to it. If it does not, do we set up another body, or do we adjust its remit so that it is covered? I have reservations about doing anything that would merge assisted dying into normal healthcare, but I have laid that out many times over the weeks, so I will not go over that.

My understanding is that, on top of all the things my hon. Friend set out, the MHRA’s role is to give marketing authorisation for the promotion and advertising of medicine. Once that has been given, reams of regulations and compliance must be done, including in respect of the labelling of medicine. I believe it would have to be put on packaging that a medicine could be used for assisted dying. We need to get clarity on that from experts in the field, so that we fully understand it. If that is the case, how do we feel about making it clear that said medicines, potentially out in the market, could be used for assisted dying? I suggest there could be some significant downsides to such clear labelling. That is something for us all to think about. I wanted to raise those important points.

[Naz Shah]

I rise to speak in support of amendment 465, tabled by the hon. Member for East Wiltshire. It is a pleasure to follow the hon. Member for Reigate, who has made some powerful contributions. As we have heard, the amendment states that a drug may be approved under the Bill only if it has been approved by the Medicines and Healthcare products Regulatory Agency for that purpose.

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[Naz Shah]

I rise to speak to amendment 439, tabled by my hon. Friend the Member for York Central, which would amend clause 21 such that the relevant body would provide the chief medical officer and the commissioner with the full set of documents relating to a person who had undergone assisted dying. The relevant body would be the co-ordinating doctor if that person were a practitioner with the person’s GP practice. If the co-ordinating doctor did not meet that condition, the person’s GP practice would have the responsibility of sending those documents.

Those documents would be the person’s full medical records, court records and all documentation relating to assessments and procedures relating to the person’s assisted death. I note that “court record” refers to the Bill before we agreed to the amendments and new clauses that replace the High Court procedure with a panel system. We should be able to slightly tweak the wording to reflect that when we tidy up the Bill. That is what the amendment does. Let me say a little about why it does so and how it would make the Bill stronger.

The key aim is to ensure proper public oversight of any assisted dying scheme. The Bill creates the role of the voluntary assisted dying commissioner, who will look at and report on the workings of the system, appoint panel members and be the final court of appeal, so to speak. Those are far too many powers to give to one person, but if we are giving the commissioner a duty to report on how the system works, they should have the best possible information. It is only right that the information also be sent to the chief medical officer for England or for Wales, as appropriate; they are both very senior public officials and experienced doctors.

My hon. Friend the Member for Spen Valley has tabled amendment 382, which, to quote the explanatory statement,

“provides for monitoring, investigation and reporting functions under Clause 34 to be carried out by the Voluntary Assisted Dying Commissioner (instead of the Chief Medical Officers for England and for Wales).”

I will have more to say on that amendment when we come to it, but removing the chief medical officer from the monitoring, investigation and reporting functions is not a good idea.

What use could the commissioner and the chief medical officers make of the data provided under amendment 439? Let me give some practical examples. If there were reported instances of a person experiencing discomfort or pain as a result of taking the medication, that would be of interest to the CMO and the assisted dying commissioner. It could trigger a further exploration of the titration of medication used in the procedure. As another example, let us think about what could happen if a family raised concerns about a person receiving assisted dying despite lacking capacity or being coerced. The CMO and assisted dying commissioner could use the information provided to investigate those allegations.

The amendment will ensure that the assisted dying commissioner and the chief medical officer receive detailed qualitative as well as quantitative data on people who have received assisted deaths. It is an important step towards making sure that the assisted dying scheme receives proper, well-informed scrutiny. In turn, that scrutiny will make it less likely that the scheme will allow abuses or ignore serious problems. I urge hon. Members to support the amendment.

[Rebecca Paul]

I will be very brief. I rise to ask a few questions about clause 21 as a whole. Following our debates on various amendments, I am aware that family and those close to the patient could not be involved in the process, although potentially for understandable reasons. I appreciate that we are not here to deal with the whole operational piece, but we should think about it. For example, what happens with notifying next of kin after death, bearing in mind that “next of kin” has a different meaning after death? That is when we start to get into legal considerations, such as who the executor is—and this could be the first time that they are hearing about it. What would be the process for that, given that the person has potentially died on their own at home with the doctor?

What is the process for handling the next stage? Is there anything that we need to include in the Bill to make it a clearer, simpler and easier process? Who will the medical certificate of cause of death be given to for registration of the death? While all that is going on, what will happen to the body? At that point, we may not have family members to take care of that. Those are some questions arising from clause 21 that are worth reflecting on.

[Stephen Kinnock]

The amendments relate to clause 21, which applies where the person has been provided with assistance to end their own life in accordance with the Bill and has died as a result. Throughout this process, we have worked with my hon. Friend the Member for Spen Valley. Amendments 379 and 500 have been mutually agreed on by her and the Government, so I will offer a few technical and factual comments.

Amendment 379 would require that, where a person has been provided with assistance to end their life and has died as a result, the co-ordinating doctor must provide the voluntary assisted dying commissioner with a copy of the final statement under clause 21 as soon as practicable. That links to the commissioner’s role in monitoring the operation of the Bill, as set out in new clause 14. Amendment 500 sets out the information that must be included in the form of a final statement, which is to be set out in regulations in accordance with amendment 214.

The effect of amendment 439 would be to introduce a new requirement for the relevant body, defined as either the co-ordinating doctor or the person’s GP practice, to provide full medical records, court records and all documentation related to assessments and procedures relating to bringing about the death of the person in accordance with the Bill to the chief medical officer and the voluntary assisted dying commissioner. The amendment is broad, and it is not clear whether doctors would be able to comply with the duties fully.

For example, GPs do not normally have access to court records, and would need to request them to provide them to the chief medical officer and the commissioner. Currently, a decision to share court records is made at the discretion of the judiciary in most cases. As such, any statutory burden to disclose court records agreed by both Houses would require consultation with the independent judiciary. Depending on the type of record, there could also be data protection considerations.

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

Rebecca Paul Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Dr Simon Opher (Stroud) (Lab)]

I thank the hon. Member for Richmond Park for her considered amendments. I would like to go through all the amendments in the group.

Amendment 348 is about the doctor communicating the outcome of the assessment, but I understand that that is already covered in clause 8(5)(b), which states that, having carried out the second assessment, the independent doctor will

“provide each of the coordinating doctor and the person who was assessed with a copy of the statement.”

I therefore do not think the amendment is necessary—it would be doubling up.

[Rebecca Paul (Reigate) (Con)]

I just point out that the amendment states that the independent doctor would

“inform the person’s usual or treating doctor”,

and that is not covered by the paragraph the hon. Gentleman just mentioned. I hope that is helpful.

[Dr Opher]

I do not see what that would add to the Bill. The co-ordinating doctor would have a result and the patient would have had the report back. I do not feel the amendment is necessary—it would over-complicate the Bill—but we can see what the Government’s legal position is on that.

Amendment 303, tabled by my hon. Friend the Member for York Central, suggests that the independent doctor should have to check that there has not already been a second opinion. We need to step back a bit and remember how the Bill will work. Basically, a doctor will refer to a co-ordinating doctor, who will make a full assessment of the patient. If, having carried out the first assessment, the co-ordinating doctor is satisfied that the requirements in the Bill are met, they will refer the person for the independent assessment. That doctor will therefore need to see a report, because he is the co-ordinating doctor. He cannot then get a second opinion from a different doctor; that would not be part of the process under the Bill. I do not feel the amendment would make the Bill any safer.

--- Later in debate ---

[The Chair]

Order. Rebecca Paul has an amendment tabled in this group, so I shall call her next. I have had indications from Rachel Hopkins and Dr Opher that they wish to speak, and I see two others, of whom I shall make a note.

[Rebecca Paul]

It is a pleasure to serve under your chairmanship, Sir Roger. I rise to speak to my amendment 468 to clause 9, which would ensure that the assessing doctor must

“ask the person why they are seeking an assisted death.”

We have heard a lot in this Committee about the importance of the patient-doctor relationship. My hon. Friend the Member for Solihull West and Shirley said that we should be

“trusting in the judgment of clinicians, who know their patients well”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 26 February 2025; c. 634.]

He also said that patients

“may want to speak to their GP because they have had a relationship with them over 30 or 40 years”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 25 February 2025; c. 481.]

It is therefore worth asking how the Bill shapes the patient-doctor relationship.

The Bill asks doctors to do many things to and for patients. It asks doctors to consider whether to raise the subject of assisted suicide; personally, I wish we had agreed to the amendment that would have ensured that it was the patient who brought the subject up first, but we are where we are. The Bill asks doctors to explain the patient’s diagnosis and prognosis and to lay out options for treatment and palliative care, if there is any available; if there is not, the doctor can only state that point and move on. Nevertheless, we are asking the doctor to look into the matter and lay out possibilities.

The Bill asks doctors to check for capacity and for coercion, to ascertain whether the patient has a clear, settled and informed wish to end their own life, to witness declarations and, eventually, to give the patient a substance and oversee the patient taking it. In other words, it makes doctors absolutely central to the process, as the facilitators of the process, as the people who accompany the patient and as the professionals with the biggest responsibility for ensuring that the safeguards are followed, yet it never asks doctors to make a simple but vital inquiry: why?

That is all that my amendment would add. It would simply require the assessing doctors to ask the person why they are seeking an assisted death. I hope that the Committee will agree that that would be a reasonable and not overly burdensome change. Some hon. Members have suggested that certain amendments embroider the Bill too much, but in this case, the patient-doctor conversation is already embroidered. The Bill makes some very specific demands of the doctor as to what the conversation should cover. Surely it is only natural, amid all the conversations, for the doctor to take a moment—perhaps more than a moment, but a moment at the very least—to help the patient to talk through their reasons. This is a very vulnerable moment in somebody’s life.

The simplest of questions can often unlock the most information. In some cases, for the small number who would benefit from the Bill, the answer would probably reassure the doctor, but for those others we worry about, the question would provide another important safeguard. It would be another opportunity to check that this really is in the best interests of the patient.

How would the conversation go? I do not think that we can generalise. It might be the briefest exchange or it might lead to a really searching discussion. Doctors know how to take their cue from the patients in these things. Crucially, the doctor’s role is not just to offer advice or information. Even if the doctor says nothing, it may make all the difference for the patient to be able to speak aloud their concerns, their confusion and their hopes and fears. I absolutely accept that many doctors, if not most doctors, would ask the question why anyway, but given its importance, I still urge the Committee to set that out in the Bill. In doing so, we would be affirming that this is more than a bureaucratic exercise; it is about a person and about getting to the truth of what they want and need.

I do not think we should not make the mistake of assuming that every doctor has the time, or will take the time, to have the in-depth conversations needed to really understand what is driving a patient’s request. It is up to us to make legislation that keeps standards high at all times. There is currently nothing in the Bill that will guarantee an in-depth conversation. I am afraid that not all doctors believe that that is even a likely outcome. In written evidence, the GP Edward Tulloch states:

“To conduct the required assessments outlined in 7.2 and 8.2 of the Bill within a standard GP appointment (lasting 10-15 minutes) is completely unrealistic. It will require multiple appointments to properly carry out such detailed discussions and complete the associated legal paperwork.”

We all know what pressure the NHS is currently under. Many of us cannot get a GP appointment. So, how certain are we that adequate time can be allocated to the assisted dying process to ensure the criteria are truly met?

By putting the “why” question on the face of the Bill, my amendment would bring us closer to the possibility of real, serious and honest conversations about a patient’s reason for seeking an assisted death. That would be especially helpful for those who have just received a terminal diagnosis. We have received some important written evidence from six palliative care doctors, who state that

“our experience is that many patients experience a period of adjustment to ‘bad news’ and may say that they cannot live under these conditions. However, after a period of reflection and adjustment, the majority come to find peace and value in their altered life circumstance, in a way they would not have believed possible.”

The consultant psychiatrist Jennifer Bryden provides an especially interesting perspective, as someone who has seen this from both sides:

“Having gone through several long episodes of illness, I now know that feeling entirely useless and a burden to everyone is a phase that will pass. For many people a terminal diagnosis will be their first time through the cycle and they will believe those thoughts represent reality. In coming to terms with a severe illness, depression is an expected phase and learning to accept all humans need each other takes time”.

Dr Bryden goes on to say that the current cooling-off period is not enough time for people to come to terms with such a diagnosis. Clearly, people may need all the help they can get to understand their new situation. Asking the patient for their reasons is only the beginning of that process, but one that may help them come to terms with their situation and validate, or not, their initial inclination.

Finally, asking why can identify those patients who are being coerced or pressured. Nobody should think that that is easy to spot. According to the charity SafeLives, which counters domestic abuse, it takes the average person who experiences violent abuse 2.3 years to access effective help. In the year before they finally get help, 85% of victims will have sought help of some kind from an average of five professionals. Often, sad to say, those who missed the signs will have been healthcare professionals. That is for physical abuse; psychological abuse will be far harder to spot. We cannot put in enough safeguards to ensure that doctors have all the tools they need and all the opportunities they can, to spot those signs.

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

For clarity, at what point in the conversation does the hon. Member expect the question to be raised? In reference to an assessing doctor, do I take it that the question must be asked twice, at different times, by both the co-ordinating and the independent doctor?

[Rebecca Paul]

I thank the hon. Member for his very good questions. I suggest that it be asked twice, because it makes a lot of sense to ensure that the patient is given the chance to really explain what is driving their decision. It is the simplest of questions, but it is amazing what can sometimes come out of the simplest question.

I return to the safeguard against coercion. In a sense, this is not a new safeguard; rather, it confirms and bolsters the other safeguards in the Bill, which are there to explore the reasons for assisted dying. Asking why will help doctors to better understand what is driving a patient’s decision and to give that patient an opportunity to validate that they are truly eligible. It is the simplest of questions, driving the most significant conversation that a doctor and patient can have. I hope that hon. Members will support my amendment.

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

It is a pleasure to serve under your chairship, Sir Roger. I rise to speak in support of amendments 201, 422 and 423, which stand in the name of my hon. Friend the Member for Spen Valley, and against amendment 468.

On amendment 201, a point was made earlier about the relevance of records. It was mentioned that it might well not be relevant to look at a childhood tonsillectomy. However, I wish to speak in slightly more specific terms, in support of women and their reproductive rights, and to highlight the risk of unconscious bias if all records are to be looked at.

If a woman had a termination in her teenage years, that will be highly irrelevant to her decision, many decades later, whether to choose an assisted death. Relevance is very important, because there will be a high level of record keeping in the process. It is not only the doctors working with the patient on the assessment who will read the records and reports; ultimately, it will also be the panel. I make the point again that so many parts of a patient’s medical records are highly irrelevant to the diagnosis and prognosis of a terminal illness, and to the six months under the eligibility criteria. Indeed, there is a risk of unconscious bias in the judgment. It is about the professionalism of the doctor in respect of understanding the records that are relevant for the process.

--- Later in debate ---

[Naz Shah]

I absolutely accept that it is the patient’s right to say, “It’s none of your business”, with the really clear caveat that they could well be a vulnerable patient. They might say that it was none of the doctor’s business, and that doctor might then not be able to explore the other things going on with that patient. That is why, for me, this does not wash.

The point that I am trying to make is that, in the course of a normal consultation, it is presumed that every doctor will know their patient and be able to have these conversations. In most cases, they probably will because we have amazing doctors; I have amazing relationships with my doctors. But does that mean that the doctors will ask that one question: “Why?” That is the crux of the whole Bill.

[Rebecca Paul]

The right to say, “It’s none of your business” might be fine when no one else is involved, but if someone seeks an assisted death, that involves multiple members of NHS staff. There is an impact on all those people, who need to be comfortable with what they are doing. Maybe the person needs to accept that they do need to provide some information so that the medical staff feel comfortable about the question of eligibility.

[Naz Shah]

That opens up a whole different debate for me. Some clinicians will not sign up to this process and some will. That is a whole different debate, but I take the point that there has to be a reason.

We talk about the option for referral to palliative care. I have previously moved amendments that would have meant a referral, without the option; however, when considering that option, a doctor needs to understand that if a patient says, “I do not have to explain myself—full stop”, or, “I do not want to talk about palliative care”, that should raise alarm bells. If a doctor says, “You’ve got this terminal illness. These are the options—let me spell them out for you. You have the option of referral to palliative care and the option of these drugs, so why do you want to kill yourself?”, and the patient turns around and says, “It’s none of your business”—

--- Later in debate ---

[Naz Shah]

I respectfully disagree. I am making the case that there is a conversation to be had. Yes, there is informed choice but is my hon. Friend suggesting that the question should not be asked at all? I take the point that with an informed choice there would have been an exploratory conversation, but sometimes just calling something out, or stating the obvious, makes a huge difference.

[Rebecca Paul]

I wish to clarify that the amendment is about not an additional assessment but merely a simple question. Like many who have spoken, I hope that most good doctors would ask the question anyway and take the answer. It may inform them or it may not but sometimes, as the hon. Member for Bradford West has just discussed so powerfully, it is helpful to remind medical staff, who are under lots of time pressure, that sometimes it is worth stepping back and asking why.

[Naz Shah]

I agree. Sometimes it will be the simple thing of asking the question as a human being—among all the conversations that are happening, just stopping and asking why.

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

Rebecca Paul Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Stephen Kinnock]

Amendments 360 and 361 introduce requirements on the co-ordinating doctor. Amendment 360 would insert an additional condition into the definition of a co-ordinating doctor and would require a co-ordinating doctor who receives financial payment for providing assisted dying to make an annual statement declaring publicly their total turnover from providing the service, the number of people they have assisted and any other information specified in regulations.

The related amendment 361 would require that any regulations specifying the information to be made available must be subject to the affirmative procedure. It is not clear whether the amendments are intended to apply to both private and NHS providers. It could create difficulty if the requirement were to apply to NHS providers, as a doctor is unlikely to know the total turnover from providing an assisted dying service.

As the Bill’s promoter, my hon. Friend the Member for Spen Valley has said that her intent is to ensure that the assisted dying service is available as an integral part of the NHS. Officials are working on amendments to later clauses to establish the operating model for her consideration.

[Rebecca Paul (Reigate) (Con)]

Does the Minister not think the word “remuneration” refers to the amount of income received specifically by the doctor, rather than by any organisation or company?

[Stephen Kinnock]

As my hon. Friend the Member for Stroud has just said, the picture is very complex because there are tariffs for services. Doctors receive a tariff for each service across the entire panoply of everything they do, particularly general practitioners who provide a very wide range of services. They are remunerated on the basis of a tariff that is negotiated in the GP contract between the Department of Health and Social Care and, primarily, the BMA. When a doctor operates in that environment, it is difficult to pick out their turnover from a particular service.

As my hon. Friend the Member for Stroud said, picking out an individual doctor and saying how much money they have made from a particular service, whether assisted dying or any other service, would put a particular focus on that doctor. We are drawing a distinction here with what the tariff could and should be, which we will need to discuss alongside the operating model in later clauses. Moving from being transparent on the tariff to saying, “That doctor over there made this much money from providing this service,” is a whole new ball game.

--- Later in debate ---

[Stephen Kinnock]

If we are specifically talking about the amendments tabled by the hon. Member for East Wiltshire, he is saying that the total turnover from providing this service should be publicly available—it should be published—so I assume he thinks it should be on a website that everybody can see.

My hon. Friend the Member for Bradford West is asking about the knowledge that, if someone wishes to seek an assisted death, they can go to a particular practitioner or service. That is baked into the Bill, and clearly those doctors who wish to opt into the service will be doing so with their eyes open—they will know that they are providing that service. We must ensure that doctors feel protected if there is a sense of risk.

It would of course be deeply regrettable if there were to be threats or risks to doctors, but the evidence from other countries suggests this has not led to some of the deeply unfortunate things we have seen around abortion clinics, for example. It does not seem to have led to that, but of course we as a Government always need to be vigilant in monitoring all our services to ensure that our excellent medical professionals are getting the support they need.

[Rebecca Paul]

I thank the Minister for that useful explanation. Does he agree that the setting of the tariff will be key, because it could either incentivise or disincentivise the provision of the service?

[Stephen Kinnock]

I agree. Like any other aspect of what doctors and general practitioners do, this service is based on remuneration. They are professionals and should be remunerated as such, so the tariff will be important. It is also important that we do not jump ahead into defining the operating model. As I said, officials are working on this with the Bill’s promoter, and it will be made clear when we get to the relevant clauses.

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

Rebecca Paul Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Stephen Kinnock]

This group of amendments refines the requirements related to the first declaration, clarifying the witnessing process, identity verification and regulatory obligations. I will take the amendments in turn.

In executing our duties to ensure that the legislation, if passed, is legally robust and workable, in this group the Government have worked with my hon. Friend the Member for Spen Valley on amendments 189 to 191 and 419. Amendment 189 would clarify the requirement for proof of identity when making a first declaration. It would adjust the wording to make it clear that proof of identity must be provided before a person signs a declaration, ensuring no ambiguity about when the requirement applies.

As with amendment 189, amendment 190 clarifies the requirement for proof of identity when making a first declaration. This amendment would make it clear that a person must provide two forms of proof of identity before signing the declaration, rather than simply at the same time. That ensures that both the co-ordinating doctor and the witness have received the necessary proof before the declaration is signed.

Amendment 191 ensures that the co-ordinating doctor can witness the first declaration only if they are satisfied that the person has provided two forms of proof of identity. The doctor must therefore first be satisfied that the required proof has been given to them and to the witness before proceeding with witnessing the signing of the declaration.

Amendment 419 requires that, before witnessing the first declaration, the co-ordinating doctor must be satisfied that a preliminary discussion has taken place, whether that was conducted by the co-ordinating doctor or another registered medical practitioner. The co-ordinating doctor must also have made or seen a written record of the preliminary discussion.

Amendment 291 adds to the requirement around proof of identity when making a first declaration. It requires that one of the forms of ID provided to the co-ordinating doctor and witness be photographic. The person must also provide proof of residence at this stage of the process. I note we would expect this type of issue to be considered by the Secretary of State when making regulations about forms of proof of identity that are acceptable, as already provided for in clause 6(3). Requiring a person to provide proof that they have been resident in the UK for at least 12 months appears to impose a different residency requirement to other parts of the Bill. Specifically, “being resident” is a looser test than being “ordinarily resident”, in clause 1, and “in the UK” is broader than “in England and Wales”, also in clause 1. In consequence, our assessment is that this amendment may make the Bill less legally coherent.

[Rebecca Paul (Reigate) (Con)]

I want to raise a question on photo ID. My apologies, I probably should have spoken sooner. Thinking this through as we have debated, I think photographic ID is important to avoid mistaken identity and fraud, and to make sure everything works as it should. With respect to this process, would the Minister normally expect photographic ID to be an acceptable or appropriate form of identification?

[Stephen Kinnock]

Yes, I believe so. Photographic ID would be the standard to which we would aspire. I do not know whether there was anything else under her question? I think the answer is yes.

--- Later in debate ---

[Juliet Campbell (Broxtowe) (Lab)]

I will speak to amendment 127, which is a probing amendment. I will not press it to a vote, but the reason I tabled it is that I felt that the phrase “as soon as reasonably practicable” was a little vague. I was taking into consideration the fact that we often talk about people who have six months to live, who are eligible for the assisted death, but sometimes people learn later on and do not have six months. If people are thinking about having an assisted death, there might be some pace at which the doctors need to work together—the co-ordinating doctor and whoever else they speak to.

I put 10 days, because I needed to put something down, and that is why I am saying amendment 127 is probing, but I do think that we need to be a little tighter with the timeframe in which we enable doctors to speak to each other, so that the patient is aware of what is happening. Also, if the patient wants to change their mind and is speaking to another doctor, they would know what timeframe they have got. The amendment is probing, and I will not press it to a vote.

[Rebecca Paul]

I think most points have been covered, so I will be brief. The point of the amendment 296 is to recognise the challenges faced by medical practitioners in the NHS. It is really well intended. I suspect that there are different ways to do this, which we could discuss, but the amendment would recognise that medical practitioners will come under a lot of pressure.

The very nature of the assisted dying process means there is pressure to move quickly—for obvious reasons. If someone is in pain and an assisted death is what they have chosen to do, they are going to want to move forward at pace. It cannot be as usual, with however long it can take in the NHS—often for a normal procedure. The point of the amendment is simply to be cognisant of the fact that other patients, too, require healthcare. This comes back to the debate we have had many times about what is healthcare and what is not. It is one of the issues that comes up when we have assisted dying amalgamated with general healthcare in the NHS.

We are hearing concerns from doctors on the frontline. In written evidence, eight doctors, six of them GPs, say that the NHS lacks both the time and the capacity to create the new role of co-ordinating doctor with its grave responsibilities. The statistics bear out their concerns. In a 2024 survey by the Royal College of General Practitioners, over 40% of UK GPs who responded said that they were “unlikely” to be practising still in five years’ time; 40% feel stressed to the point of “not coping” at least once a week; and 79% are concerned about having fewer GPs at their practice and its impact on the quality of care that their practice can deliver. The reality of the matter is that we have to recognise that the introduction of assisted dying places another pressure on our health system, and to try to address that head on.

[Kim Leadbeater]

The hon. Lady is making some interesting points, but would she agree that we are talking about not new patients, but existing patients who are already in their last few months of life? It will not create a whole new pressure on the health service, because they are already receiving treatment.

[Rebecca Paul]

I thank the hon. Member for that point. There will absolutely be some occasions where that is the case, but assisted dying is a different pathway—and we have a whole Bill on it, so there will be other formalities and safeguards. We are all here to make sure that rigour is applied to that pathway. With the best will in the world, there will always be more work and pressure, especially time pressure, on doctors. That time pressure will be critical.

[Danny Kruger]

I completely agree. The hon. Member for Spen Valley makes the important point that these patients are, indeed, being treated already; one would hope that the palliative care process would continue alongside their application. It is absolutely right that they are being treated, but as my hon. Friend the Member for Reigate says, there would be additional work being done for them. Does she agree that there is also an opposite threat—that the resource being expended on the patient might be less as a result of the assisted death that they get? I am afraid to say that that would introduce a terrible new incentive into the system, as happens elsewhere.

[Rebecca Paul]

This is a complex issue, and that is why I welcome the debate on this group. There are lots of things that need to be thought through to make sure that, if assisted dying is legalised, we manage it in the most effective way for patients.

[Dr Simon Opher (Stroud) (Lab)]

I thank the hon. Lady for making this point, which is important, although probably not specifically relevant to what we are talking about in general with regard to making the Bill safe. Has the hon. Member for East Wiltshire not just completely contradicted the whole point of the amendment, however, by saying that we really do not know whether this process will cost more or less time for the NHS?

[Rebecca Paul]

Different situations will give a different result. It is a complex situation. We could have a patient who, if they did not have an assisted death, would be on a palliative care pathway, which might not involve as much time from their GP—the assessing doctor, in that instance. If they moved on to the assisted dying pathway, however, the assessment process would need to start, and it has to happen quickly for all the reasons that I have set out.

The Bill relies on doctors being highly conscientious and hard-working, but it also risks taking them for granted if it makes no allowance for the present realities that they face in our healthcare system. This amendment tries to reflect and recognise that.

In November, the hon. Member for Stroud said,

“I have watched with horror as our NHS has gone from being the best health service in the world…to being a service on its knees.”—[Official Report, 6 November 2024; Vol. 756, c. 358.]

If the NHS is to get off its knees, surely we cannot afford for assisted suicide to jeopardise the care of patients who already struggle to get an appointment. We must recognise that there are people out there who cannot get an appointment to see their GP, and reflect that in the Bill.

[Sojan Joseph]

I rise to speak briefly to amendment 296. We all know how the NHS operates, how the appointment system works in the NHS and how long people have to wait to see a doctor. I do not think that my hon. Friend the Member for York Central tabled the amendment with any ill thought, but just to highlight the issue. I do not think that the amendment will make the Bill any safer or stronger, or safeguard anything, but the Committee needs to acknowledge it.

I will quote the Royal College of Physicians, which represents 40,000 doctors who primarily work in hospitals, including on palliative care. The Royal College of Physicians took a neutral position on the Bill. In its written evidence, it highlighted,

“We recognise that the ultimate decision on assisted dying rests with society through Parliament, however any changes to the law will significantly affect clinical practice beyond palliative care…Should the law change, the RCP strongly argues that assisted dying must not divert resources from end of life and palliative care provision, which are not currently adequate.”

With amendment 296, my hon. Friend the Member for York Central is trying to get the Committee to acknowledge that some NHS departments work with vacancies of 50 medical professionals. A patient who has been waiting for six months should not have their appointment cancelled because the provision here is prioritised. I think that is what my hon. Friend meant with her amendment, and I commend her thought about wider NHS provision.

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

Rebecca Paul Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Stephen Kinnock]

It is absolutely the hon. Member’s prerogative to press the amendment to a vote if he so wishes. As things stand, because of the baseline, which is the GMC guidance that I have just read out, we constantly go back to the Government’s position that the current corpus of guidance, regulations, advice, training, expertise and professional judgment is, in essence, satisfactory to the Department. We believe in and rely on the professional judgment of the experts in the field. That remains our fundamental position.

The effect of amendment 320 would be that the safeguards in clause 4(4) in respect of the preliminary discussion apply only where the person seeking assistance is aged 18 or over. The amendment would not prevent a discussion with a person under 18. As the Committee will be aware, there is already a requirement that, to be eligible for the provision of assistance under the Bill, a person must be 18 or over when they make their first declaration under clause 1(1)(b).

Amendment 270 would make it a requirement for a registered medical practitioner to ensure that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying. The amendment does not state what is to happen if the practitioner considers that there are remediable suicide risk factors. As the Committee will be aware, we rely on medical practitioners to make judgments in relation to their patients that draw on their training, experience and expertise. We would expect the judgment and skill of a medical professional to be brought to bear where there are remediable suicide risk factors.

Amendment 276 would mean that a person is unable to have a preliminary discussion or make a first declaration to be provided with assistance to end their own life until 28 days after receiving a terminal diagnosis. The amendment would add an additional pause into the process for a person who has received a terminal diagnosis in the preceding 28 days. The 28-day pause would apply regardless of the patient’s prognosis, even if they had only one month left to live, for example.

New clause 6 would ensure that an advance decision to refuse treatment under the Mental Capacity Act 2005 cannot be used to seek assisted dying. Our analysis suggests that the new clause is not necessary, because an assisted death is available only to those with capacity, whereas advance decisions provide for a person to be able to refuse treatment at a future time when they have lost capacity. If a person still has capacity, they may be eligible for an assisted death. If they do not have capacity, they will not be eligible, irrespective of whether they have made an advance decision.

That concludes my remarks on this group of amendments. As I say, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could change. However, I hope my comments and observations are helpful to Committee members in considering the Bill.

[Rebecca Paul (Reigate) (Con)]

I appreciate the opportunity to speak briefly, Mr Efford. Many other speakers have already made excellent points in support of the amendments, so I will not repeat them, but I would like to put on record one pertinent point.

During these proceedings, there has been a tendency by some to speak as though assisted dying were another type of treatment or healthcare option being offered by medical practitioners, rather than a completely different and separate offering. I have grave concerns about that. The legal norm, and GMC guidance, is that patients should be offered all reasonable medical treatments. A medical treatment can be defined as something that combats disease or disorder. It is fundamentally about healing, relief of symptoms, recovery and cure. Straightaway, we have a conflict. Assisted dying ends the life of a person. It is not a treatment in the normal sense—

[The Chair]

Order. You need to speak to the amendments in this group.

[Rebecca Paul]

I am. It is relevant, because we are talking—

[The Chair]

You will need to explain to me how you are speaking to the amendments.

--- Later in debate ---

[Rebecca Paul]

We are talking about what a medical practitioner can and cannot say. During the debate, there was a lot of talk about whether it was a medical treatment or not. If so, guidance indicates how it should be treated, so whether it is a medical treatment or not is relevant and pertinent to the clause. I have an important point that I would like to put on the record; I am happy to raise it at a different point, but I honestly believe that clause 4 is the right place.

[The Chair]

The problem is that this is not a general debate on clause 4; it is a debate about a specific group of amendments. We may come later to a general debate on clause 4.

[Rebecca Paul]

I can wait until the stand part debate.

[The Chair]

If there is a stand part debate, that will be the right time to make a contribution about the general principles of clause 4.

[Rebecca Paul]

Okay. I will just put it on the record that whether or not something is a medical treatment is vital. It is possible to give medical treatments without consent, so we need to have that debate.

[The Chair]

That is for the wider debate. I call Kim Leadbeater.

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

Rebecca Paul Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Liz Saville Roberts]

That is exactly what I am seeking to do, and I am seeking to do it as co-operatively and collegiately as possible. But we need to have clarity on this, and our discussions need to be thorough and exact in order to be accurate.

When it comes to the individual’s right to use Welsh in their daily lives, two pieces of legislation are relevant to the Bill: the Welsh Language Act 1993, which predates devolution, and the Senedd’s Welsh Language (Wales) Measure 2011. The Welsh Language Act remains applicable for reserved matters, such as justice, and the Ministry of Justice operates a Welsh language scheme that enables people to use Welsh in courts, tribunals and other areas of justice. The Welsh Language Measure established the office of the Welsh Language Commissioner, who has the power to investigate complaints from Welsh speakers who assert that their freedom to use Welsh has been interfered with; created a Welsh language tribunal to hear appeals against the commissioner’s decisions; and enabled the development standards, which are particularly significant here.

The Welsh Language Measure states that individuals in Wales should be able to conduct their lives through the medium of Welsh if that is what they choose to do. Under the Measure, the NHS in Wales has a statutory duty to deliver services to the public in both Welsh and English. The Welsh language standards are a set of statutory requirements that set out responsibilities to provide services, and they apply to health boards in Wales, as well as to NHS primary care services that are contracted by the health boards. The standards do not apply to independent providers, which since 2019 must follow six Welsh language duties, one of which is to establish and record the language preference of patients. That is where I have got the terminology used in amendment 413.

That is a summary of the relevant considerations but, before I close, it is important to say why this matters to Welsh speakers. I spoke recently to medical practitioners in Wales who wanted me to emphasise their concerns at the lack of specific mention of language rights. I also spoke to the Welsh Language Commissioner’s officers, who advised me on the necessity of the amendments. There is a critique against providing Welsh language services that shrugs its shoulders and says, “Why bother? They all speak English anyway.” That is to ignore how integral language use is to the individual.

We are drafting a Bill to do two things in a very delicate balance: to respect the autonomy of the individual and to safeguard people against abuse in any form. For many Welsh speakers, Welsh is the language of their emotions. It is the language in which they express themselves most fluently, and the first language of their feelings. It matters to this Bill. English is the language of authority, and many Welsh speakers are anxious not to challenge the authority of high-status people such as doctors. They do that out of ingrained politeness, and out of fear of not being able to access services if they put any barriers in the way. That is the way that language gets used. Welsh speakers do not use Welsh in the way that monolingual English speakers use English; monolingual English speakers use English because it is the only language they have. For anyone who is bilingual or multilingual, the use of language is very complicated and sophisticated, and we need to be alert to it in all its respects.

I return to the nature of the relationship between doctors and their patients. Doctors have high status, and a patient approaches a doctor seeking services, advice and context. That is not a power dynamic that we should allow to go unchecked, so I urge the Committee to consider the amendment. I do not intend to press it to a vote, but I want a response from the Ministers. Before Report, I want absolute clarity on its legal necessity or otherwise. I feel instinctively—especially because the Welsh Language Commissioner’s office has told me this—that it should be in the Bill. I would also like a response from Ministers on amendment 414, tabled by the hon. Member for Ipswich.

[Rebecca Paul (Reigate) (Con)]

I rise to speak briefly to amendments 413 and 414, which are very thoughtful and well-considered amendments. I thank the right hon. Member for Dwyfor Meirionnydd for setting out powerfully and persuasively the importance of the subject. I support the amendments, but in reality we probably need to go further by specifying exactly who would be interpreting and making sure that it is regulated reliably. We do not want just anyone coming in off the street and doing that. That would not be appropriate, so we need to think about whether we need to go further. However, the amendments are a great starting point and would move us closer to where we need to be.

There is much subtlety in this debate. We talked a little in the first week of this Committee about the importance of language and the words that are used. We always need to be cognisant that when we are imparting information to people, particularly in a healthcare context, it is vital that we use language that people understand so that the ramifications of what is being discussed are clear. That is where these amendments become really important, because for those for whom English is not their first language, some of the subtlety and nuance around what a term means could be lost. Interpreters could be an important part of adding the clarity required to ensure that everyone going through the process understands exactly what it involves.

A 2024 Nuffield Council on Bioethics survey found that 39% of people think that assisted dying means withdrawing life support, 19% think that it means providing people who are dying with drugs that relieve symptoms of pain or suffering, and 13% think that it means providing hospice care. That echoes our debate a couple of weeks ago about how assisted dying can be interpreted in quite a few different ways. It is really important that we are clear in the language we use and what we mean by it.

We also find that among ethnic minorities there is sometimes a greater misunderstanding about palliative care. A 2024 King’s College London survey found that 6% of people believe that it is accurate that palliative care involves giving people medicines in order to shorten their life, but 18% of ethnic minority groups think that. We need to be cognisant of that. While 18% of people trust healthcare providers “not very much” or “not at all” to provide high-quality care towards the end of life, that figure increases to 30% for ethnic minority groups. While 6% of people say they have not heard of palliative care, that increases to 22% of people in ethnic minority groups.

It is important to recognise that the text of the amendment is much less stringent than that of section 7 of South Australia’s Voluntary Assisted Dying Act 2021, which strictly regulates interpreters. That goes back to my initial point. Under the South Australian law, they must be

“accredited by a prescribed body”.

They cannot be a family member, cannot stand to benefit from the will and cannot be involved in the patient’s healthcare. It is really important to ensure that a recognised professional is involved in this most important of processes and information sharing.

I support the amendments, although I think they need to go a little further. I look forward to hearing what other hon. Members have to say.

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

I echo the points that have been made about the importance of the initial conversations, particularly for those who do not have English as their first language. I made a commitment to my hon. Friend the Member for Ipswich that in his absence I would press amendments 414 and 415 to a Division, as he requested.

I support the general principles of the amendments relating to those who are seeking or who need interpretation to explain aspects of assisted dying to them. I support the merit of that principle and the intention behind amendments 414 and 415.

--- Later in debate ---

[Danny Kruger]

I rise to speak to this important group of amendments, which are all relevant to the duty to refer, whereby a doctor who does not want to advise a patient on assisted dying is obliged to send them to somebody who does. In different ways, we each seek to provide more protections for those medical professionals.

There are two main reasons why doctors may not want the obligation to refer that is in the Bill. The first is the central point that this is not a healthcare treatment, as is traditionally understood. Assisted dying does not address the condition or treat the illness; it treats only the symptoms, in the sense that it obliterates the existence of the patient. Like the advert for bleach says, it “kills all known germs”—it kills every experience that the patient has or could have. It is not part of the range of treatments that a doctor should have to offer, as clause 4(1) makes clear.

That point similarly relates to the question of referring to somebody who can offer that discussion. I suggest that the act of referring is an act of endorsement, just as offering the intervention itself is an act of endorsement. Dr Green from the BMA made it clear during oral evidence that the BMA does not like the word “refer”, as it implies assent to the option that is being offered. Indeed, the hon. Member for Spen Valley, in conversation with Dr Green during evidence, accepted that the word “refer” was “not…quite right”, as she put it, because it has the particular implication and expectation of a form of endorsement.

We have heard the same opinion from multiple witnesses in written and oral evidence to the Committee, particularly from Muslim medical professionals and their trade body. Those representing pharmacists also expressed significant concern that they might find themselves included in the definition of medical practitioner. The Association of Anaesthetists and the Royal College of Nursing were worried as well. A range of professional bodies and representative organisations share my concern that imposing a duty to refer—an obligation to assist somebody to have an assisted death by finding them a doctor who will conduct the preliminary discussion—is itself a breach of their rights of conscience.

The second reason follows from the first. Doctors may reasonably conclude that being in a position to help with assisted dying puts them in a totally different relationship with their patients. That is why the BMA is so unhappy and has asked for the requirement to be removed. It has an alternative, which some of these amendments also propose. It said:

“We urge the committee to remove the referral requirement and, instead, make it clear that the doctor’s duty is to direct patients to where they can obtain information”.

That is what amendment 341, in the name of my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson), would do. The BMA suggests that

“this should be an official body set up to provide individual information and advice to patients, to which patients could be referred or directed to, or could self-refer.”

My preference would be not to have any obligation on doctors to make any kind of referral, but I respect the aspiration of the amendment, which is to ensure that there is an independent body to give advice that patients can seek out themselves or that they can be advised of, so there is no expectation of a referral to a doctor who can facilitate the assisted death.

The Royal College of General Practitioners is also unhappy about the provision. It suggests that instead of expecting doctors

“to refer directly to a medical practitioner who is ‘willing and able to conduct that discussion’”—

as per the Bill—

“the doctor’s duty would be to direct patients to an official service where they can obtain objective and accurate information”.

I think we should pay heed to the advice of the professionals.

As ever, I would like to refer to the experience of foreign jurisdictions, because we are constantly told that this Bill is the safest in the world. None of the legislation in Australia or New Zealand, or the legislation currently going through in the Isle of Man, puts an obligation to refer on to doctors. Victoria and South Australia’s legislation says that a doctor has the right to refuse to participate in the request for assistance process and to give information about voluntary assisted dying, so there is no duty to refer—not even a duty to provide information.

I conclude with an observation that was submitted to us by Dr David Randall, a consultant nephrologist. It was very telling that he said in written evidence:

“I would not be willing to act in accordance with Section 4(5) of the Bill. I am a doctor in good standing with the GMC, and who has always striven to provide the highest standards of care to patients. Passage of this Bill would place my practice in direct opposition to the criminal law.”

He talks about “moral injury”, which is a very important principle. We have an obligation to protect the conscience and human rights of medical professionals.

We are still unclear whether this process will take place within the NHS or outside it. Nevertheless, the obligation to refer in the Bill would be a direct breach of doctors’ rights and would impose a moral injury on them. My preference is to remove clause 4(5) altogether, as that would be consistent with the Abortion Act 1967 and similar legislation on assisted dying in other countries. If we are not prepared to do that, we should at least restrict the obligation and provide more protections, as per the amendments in the names of other hon. Members.

[Rebecca Paul]

I rise to speak in support of amendment 341 in the name of my hon. Friend the Member for Sleaford and North Hykeham. It would provide that a registered medical practitioner who is unable or unwilling to have the preliminary discussion must provide information to the patient about where they can have that discussion, but that need not take the form of a referral.

One of the messages that we heard loud and clear in the evidence sessions was that medical practitioners do not wish to be put under an obligation to refer a patient to another registered medical practitioner by the Bill. “Referral” has a very specific meaning in medicine, and it is that word and the corresponding action required of it that many doctors have an issue with. A referral puts a patient on a pathway, whereas the provision of information merely indicates where such a pathway can be found. During oral evidence, Dr Green said:

“The word ‘referral’, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]

We are well aware that assisted dying is a complex issue and a matter of conscience for many. It is therefore important that we respect the personal views of medical practitioners. One of the points that I have made several times in these proceedings is that assisted dying affects not just the patient but other people participating and supporting. Some medical practitioners will be comfortable with it, but many others will not. It is therefore vital that we recognise their rights and needs, not just the patients’, when formulating this law. If for whatever reason a doctor does not want to refer a patient, they should not have to. Their legal responsibility should be limited to directing the patient to where they can find the relevant information that they need. Doctors should have no further obligation.

--- Later in debate ---

[Rebecca Paul]

I thank the hon. Lady for that intervention, which I welcome.

[Lewis Atkinson (Sunderland Central) (Lab)]

I will be brief. I am pleased to hear my hon. Friend the Member for Spen Valley confirm that she is minded to support amendment 341. It is incumbent on all of us, but perhaps particularly those in favour of the Bill, to place on record our appreciation and recognition of the fact that many people who work in our health services have strongly held religious beliefs, or beliefs of conscience—however they are motivated. As is the case for a range of other procedures and medical interventions, the law has to allow them scope to continue to practise. They make a valuable contribution to our health service and national life, and we should not do anything to impinge on that.

There is already strong guidance from the General Medical Council about personal belief, and that applies, as the hon. Member for Reigate mentioned, to the Abortion Act, as well as to the Human Fertilisation and Embryology Act 1990, the Female Genital Mutilation Act 2003 and other procedures. It is not for any of us to second-guess someone’s conscience.

--- Later in debate ---

[The Chair]

I understand that the hon. Member for Reigate wishes to make a point on clause 4 stand part. I am minded to allow a debate on clause 4 stand part, but I remind hon. Members that I do not expect relitigating or rehashing. The debate will have a very narrow scope; it will not be an opportunity to rehash. The Question is simply whether the clause, as amended, should stand part of the Bill. With that caveat, I call Rebecca Paul.

[Rebecca Paul]

I very much appreciate the opportunity, Mr Dowd. I will attempt to be brief.

First, I welcome the acceptance of amendment 414, in the name of the hon. Member for Ipswich; of amendment 108, in the name of the hon. Member for East Thanet; of amendment 275, in the name of the hon. Member for Sunderland Central; and of amendment 341, in the name of my hon. Friend the Member for Sleaford and North Hykeham. The amendments strengthen the clause, so I thank Committee members for accepting them.

I have one pertinent point to put on the record about clause 4. The clause deals with what is and is not included in the initial discussion with registered medical practitioners, so the definition of assisted dying, as well as what it actually is, becomes relevant to understanding what guidance does and does not come into play. During these proceedings, there has been a tendency to speak as if assisted dying were another type of treatment or healthcare option being offered by medical practitioners, rather than a completely different and separate offering. It has been said many times that assisted dying should be treated in the same way as any other treatment and that the existing guidance from the GMC sets out appropriate best practice and should applicable and relied on. I have some concerns about that, which I wish to put on the record.

The legal norm, and GMC guidance, is that patients should be offered all reasonable medical treatments. A medical treatment can be defined as something that combats disease or disorder. It is fundamentally about healing, relief of symptoms, recovery and cure, so straightaway we have a conflict. Assisted dying ends the life of a person; it is not a treatment in the normal sense of the word. It is important that it is not a treatment, so that doctors are not obliged to offer it in the same way that they would offer another, more normal, medical treatment.

The Association for Palliative Medicine’s written evidence covers the point:

“A crucial question is whether or not assisted death by lethal medication is considered to be a medical treatment. Given that doctors are required to assess eligibility for, prescribe, and be present at the administration of the medication, AD might be considered to be a ‘medical treatment’. If this is the case then either assisted dying should be offered to all people meeting the eligibility criteria, or doctors need to behave differently towards this medical treatment than to all other treatments. Both of these approaches are contrary to all prior medical practice and public expectation, and laden with risks of unintended consequences.

The APM recommends that if AD is implemented in England & Wales it is done outside of ‘usual medical practice’ and is not regarded as medical treatment.”

This is because there are detrimental consequences from classifying assisted dying as treatment and relying on guidance. First, it could undermine the doctor-patient relationship by confusing the distinction between healing and ending life. Patients who are used to looking to their caregivers for help may worry that they will instead be put on a pathway to an assisted death. That could deter them from seeking medical help when they need it. Dr Jamilla Hussain spoke powerfully on that point, so I will not repeat it.

Secondly, the word “treatment” currently has largely positive connotations. If the word starts to be used for assisted dying, its meaning will change entirely. I wonder about the intersection with other pieces of guidance and law that refer to treatment, for example where treatment can legally be given without the consent of the patient. We all agree that assisted dying should never be administered without consent, but that is why we must be careful with our language and definitions. In certain situations, treatment can lawfully be given without consent, so it must follow that, to protect against the risk of unintended consequences, assisted dying is not deemed to be a treatment.

I ask the Minister’s view on that risk—I note that there is no reference in the Bill to assisted dying being a treatment, which is really good news—and his advice on how best to ensure that assisted dying is not and will never be considered a treatment as a consequence of the Bill or of any other statute or guidance. I also ask his view on the appropriateness of relying so heavily on GMC guidance for best practice, as I imagine that that guidance could change at any point without the consent of Parliament.

[The Chair]

At this point, I will not necessarily call Members, including the Minister, unless they particularly want to speak. If Members do wish to speak, will they please bob?

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

Rebecca Paul Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

It is a pleasure to speak under your chairship, Mr Dowd.

I rise in support of amendment 234. I acknowledge the point made by the hon. Member for Harrogate and Knaresborough about not pushing it to a Division, but it is important to hear why it would benefit the Bill if it was agreed to. It would allow a terminally ill person with a neurodegenerative illness, disease or condition who has fewer than 12 months left to live—rather than six—the right to choose an assisted death. I speak as a humanist, because I am very alive to many members of the public, and some MPs, wanting a wider scope of eligibility to cover intolerable suffering. In fact, some want no timescales, and an amendment has been tabled for that. I believe that my hon. Friend the Member for Spen Valley, who introduced the Bill, has had people speak to her and say the Bill needs to go further.

Like all of us, I want to make this a good Act that will have strong safeguards while allowing people choice at the end of life, and I want it to command the support of the House. I reflected on whether we need to have such a wide definition to cover intolerable suffering, and I thought that a change to 12 months for those with neurodegenerative diseases would be a good way to reflect the breadth of voices we have heard in debates on the Bill. It is an appropriate compromise. One of the things we have seen over the course of our Committee debates is the real pulling apart and consideration of what this legislation will mean in practice.

As the hon. Member for Harrogate and Knaresborough set out so well, a 12-month timescale for those with neurodegenerative diseases would mean that people could make decisions while they still have mental capacity. As he rightly said, their condition would so often see a cognitive decline before six months. The Motor Neurone Disease Association—another organisation that supports people living with terminal neurodegenerative diseases—highlighted problems with the six-month criteria and the inequity that arises.

Again, I reference the testimony of medical practitioners from Australia, where some states have eligibility criteria for assisted dying that includes an illness, disease or condition that is expected to cause death within 12 months. It is out there in practice, so it is not a new concept. Professor Meredith Blake said in oral evidence:

“Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 211, Q270.]

I will draw my remarks to a close, but there is a personal reason why it is important to me that we reflect on 12-month eligibility: the case of Diane Pretty. Diane Pretty was from Luton, albeit she lived in the neighbouring constituency, and some 25 years ago she was diagnosed with motor neurone disease. She tried to change the law then so that she could access assisted dying, such was the pain and suffering that she endured because of her terminal illness. What she said is fundamental and at the heart of what we are trying to do here, 25 years later:

“I want to have a quick death, without suffering, at home and surrounded by my family.”

In the end, Diane Pretty was not successful, and she died aged 43 on 11 May 2002. She did not have a choice. She could not choose the death she wanted. Much has been said about rushing the Bill, but that was over 20 years ago, so the debate has been going on for many years. That is why I speak in support of amendment 234, so that those with neurodegenerative terminal illnesses, whose death is reasonably expected within 12 months, can access assisted death.

[Rebecca Paul (Reigate) (Con)]

I will speak to amendments 9 and 10, which were tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool). Members will spot the trend: I have been speaking in favour of a lot of her amendments.

Amendments 9 and 10 would make sure the Bill does what it aims to do: ensure that assisted death is available only to those who are genuinely at the end of life. Under clause 2, a person is terminally ill if they have a prognosis of less than six months and if they have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

That wording gives rise to a risk of unintended cases meeting eligibility criteria.

In Oregon, conditions such as anorexia, diabetes, arthritis, HIV/AIDS and hernias have all qualified for assisted death. That is partly because the Oregon law uses the language of “irreversible”, just as the Bill says

“cannot be reversed by treatment”.

Conditions like diabetes arguably cannot ever be “reversed”, which suggests something more akin to “cured”; they can only be managed. The definition of terminal illness is now broader than it was ever intended to be.

[Tom Gordon]

Prior to being elected to Parliament, I worked for a type 1 diabetes charity—I feel like I have been saying that a lot recently. When we talk about diabetes, we often do not consider the fact that there are different types, including type 1, type 2 and gestational. They are not all akin, or the same. Furthermore, the NHS in its own language has referred to it as “a lifelong condition”, rather than a disease or anything that is terminal. How would the hon. Lady reflect on that?

[Rebecca Paul]

I thank the hon. Member for that thoughtful intervention, and I completely concede that it is not entirely clear, and there are different sources that describe it differently, which, for a non-medical person like myself, makes it difficult. There are certain websites, including NHS England, that may reference it as “progressive”, but equally I am sure that there are other sources that do not describe it in the same way. The hon. Member for Harrogate and Knaresborough makes a really good point, and he will see that I quite often talk about things arguably being the case; I am not saying that it definitely is—I am just highlighting that there is a risk, because if people disagree on whether it is progressive, that is when we have an issue. I see this as an opportunity to tighten up any of that potential risk.

I would say the ordinary person on the street would not expect diabetes to ever fall within the definition of a terminal illness, yet there is a risk that it could do, for the reasons I have explained. That means that the drafting of clause 2 is not quite tight enough in my view.

[Kim Leadbeater]

Just before the hon. Lady moves on, we may actually have come to a very sensible position based on the other amendments we have been discussing—amendments 399 to 401. I have done a little bit of googling, and diabetes generally is referred to as a “condition”. It might be referred to in other ways as well, but maybe that would be another reason for us all to support amendments 399 to 401.

[Rebecca Paul]

I thank the hon. Lady for that extremely good news. That would definitely be helpful and provide some reassurance.

Amendments 9 and 10 are essential to ensure that those people who are never intended to eligible for assisted dying under this Bill are kept outside of it. Amendment 9 seeks to ensure that it is not just illnesses that can be reversed by treatment, but illnesses where the progress can be controlled or substantially slowed by treatment, that are ineligible—diabetes being the classic case, which can be slowed and controlled by treatment. Amendment 10 further bolsters that by ensuring that treatments that improve prognosis are not disregarded under clause 2(1)(a).

The problem that we have with clause 2 in its current form is that it fails to distinguish between those who are truly at the end of their life and those who only become terminal if they do not access treatment. There is no requirement for a person to be receiving medical care when their prognosis is assessed, which means that many manageable but irreversible conditions—like diabetes, potentially, and chronic kidney disease—could qualify as terminal if treatment is stopped. Let us take the example of someone with type 1 diabetes, like my hon. Friend the Member for South Northamptonshire (Sarah Bool), who tabled these amendments. If she were to stop taking her insulin, she might meet the criteria for terminal illness under the Bill and qualify for an assisted death—I mean, I certainly hope she would not. Without treatment, type 1 diabetes could arguably be an inevitably progressive and irreversible condition that would result in death within weeks or months.

[Dr Opher]

There is nothing inevitable about a diabetic getting worse; they just need to take the right treatment, so I would say that “inevitable” is a key word. I respect what the hon. Lady is saying about the amendments, and they do have some value, but I do think it is covered by the current language—

“inevitably progressive…disease…which cannot be reversed.”

I think “inevitable” and “cannot be reversed” are enough of a safeguard to make this a good clause.

[Rebecca Paul]

I know the hon. Member has a huge amount of experience on this matter given his career, so I thank him for that contribution.

It must not be forgotten that it is the nature of such illnesses for there to be periods of unwellness, when people are at their lowest ebb, and it is our job to protect them from something that could sound appealing at that moment in time. The crux of this issue is that—subject to the point that the hon. Member for Spen Valley made about the improvements that we may now see following the amendments that we have just discussed—the Bill makes no distinction between a condition that is inevitably fatal and one that could be substantially slowed with treatment.

[Dr Shastri-Hurst]

My hon. Friend is making a valid argument, but I want to pick up the point made by the hon. Member for Stroud. He talked about illnesses that are inevitably progressive and cannot be reversed by treatment. For type 1 diabetes—I think that is what my hon. Friend the Member for South Northamptonshire (Sarah Bool) is addressing, as opposed to other forms of diabetes—a person either has insulin or does not.

[Dr Shastri-Hurst]

Forgive me, Chair. I will come to the point. If the person does not have insulin, the diabetes could be treated by administering it. Does my hon. Friend accept that, in those circumstances, it would fall within this clause?

[Rebecca Paul]

I thank my hon. Friend—another doctor. I would suggest that diabetes cannot be reversed, but can be managed with treatment. All I am trying to do is make sure that that piece is picked up. I think we all agree that we would not expect diabetes to fall within the terminal illness diagnosis.

No fewer than 15 clinicians and medical researchers mentioned diabetes in written evidence. Other conditions are mentioned too. Two consultant physicians—Rosemarie Anthony-Pillai and DP Whitehouse—say that those on medication for heart failure could qualify if they stopped taking their medication. Dr David Randall, a consultant nephrologist at the Royal London Hospital, sets out in written evidence the example of a young man who has benefited from a kidney transplant but stopped his immunosuppression medication. That would lead to transplant rejection and, likely, death within a few months. Would he qualify as terminally ill if we were not to agree to these amendments?

[Lewis Atkinson]

The examples that the hon. Lady gives of the refusal of life-preserving treatment—for example, stopping insulin—would inevitably lead to death, so why does she believe that anyone in such a situation would need to seek voluntary assisted dying?

[Rebecca Paul]

I am sharing the content of written evidence. People working in this arena—medical professionals and clinicians—have taken the time to submit written evidence, which suggests that they see a risk, so this is something that we need to think about. The hon. Gentleman could be right when he asks why someone would seek assisted death in that situation, but it is more about if someone technically qualifies. Obviously, we are still yet to get through the Bill, and there is lots for us to debate, but we want to ensure that people are not put on that pathway if they are not actually terminally ill and their condition can be managed. People could be in a low place, and we need to provide support. This comes back to my point about the balance of best interests. It is really difficult to set the right level, but we need to think about best interests and protect people at their lowest point.

In Oregon, conditions such as anorexia, diabetes, arthritis and hernias have qualified for assisted death, not because they are inherently fatal but because treatment was refused or was unaffordable. We also need to think about situations such as supply chain issues with certain treatments. Situations that we do not want to happen could arise, and we need to think about what that means for this Bill.

Some lawyers and doctors in the US have advised patients on how to bypass the terminal illness criteria by refusing food and water until they become terminal—we have talked about that quite a lot today. There is some evidence of that happening. Cody Sontag, an Oregon woman with early-stage dementia, had few symptoms and was not eligible for assisted death, but after she refused food and water for a few days, her doctor ruled that she met the six-month prognosis requirement.

It is important that we carefully consider young women suffering with eating disorders, but I appreciate we have spoken about that group a lot today, so I will be brief. In Chelsea Roff’s evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide where anorexia nervosa has been listed by name as a terminal condition. In 100% of the cases, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. Roff said,

“I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions…they had decades of life ahead of them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 139, Q175.]

UK courts have already ruled that treatment can be withdrawn from young women with anorexia, acknowledging that the likely result will be their death, after doctors framed their condition as terminal or untreatable. These examples powerfully demonstrate why it is vital these amendments are accepted, so that these conditions do not lead to a person qualifying for assisted death, if they can be managed sufficiently with treatment. In oral evidence, Dr Miro Griffiths asked us,

“What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 142-143, Q179.]

In written evidence, Pathfinders Neuromuscular Alliance warned that for those with conditions like muscular dystrophy, access to treatment is essential. It said,

“It would not be unreasonable therefore to suggest an individual with neuromuscular respiratory failure could die within six months—and yet they might also live 20 to 30 additional years in this state.”

In written evidence, a group of leading physicians and researchers, including experts from John Hopkins University and the Royal College of Psychiatrists said,

“The Bill’s definition of terminal may not adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care.”

They added,

“Under this Bill, patients with incurable but treatable conditions could become terminal if they are unable to access timely treatment or choose to forego life-sustaining care.”

It is therefore vital that the definition of terminal illness is tightened to avoid unintended consequences. These amendments would ensure that the Bill applies only to those who are generally at the end of life, without prospect of recovery. I urge the Committee to give consideration to accepting them.

[Naz Shah]

First, I will speak to amendments 9 and 10, then to amendment 234, and then to my own amendments 48 and 402. I hope it is in order to note that the hon. Member for South Northamptonshire (Sarah Bool), as the hon. Member for Reigate already mentioned, is a type 1 diabetes sufferer. Amendments 9 and 10 both concern matters of which she has a personal understanding.

Amendment 9 would mean that an illness, disease or medical condition, the progress of which can be managed or controlled by treatment, would not be characterised as a terminal illness. The amendment provides that instead of saying that the illness cannot be “reversed” by treatment, the Bill should say that its progress cannot be “controlled or substantially slowed”. The amendment is clearly a most important one. It seeks to prevent illnesses that can, in fact, be treated effectively from being classified as terminal illnesses.

The amendment would work to mitigate two very serious risks posed by the Bill. First, it would make it more difficult for someone who, for whatever reason, wished for an assisted death to qualify for that process by failing to follow a reasonable course of treatment. I do not say that the amendment would make it impossible for anyone not to do so, but it is an important safeguard. It would also provide a safeguard against the expansion of those conditions that would qualify people for assisted death.

My hon. Friend the Member for Spen Valley and members of the Committee have repeatedly praised the Oregon law, but we surely do not want to follow that example in every way, since we know that in Oregon, sufferers of anorexia have been able to access assisted dying. Again, I do not say that the amendment would make it impossible to expand the list of conditions, but it would make it harder. My hon. Friend has said repeatedly that she wants the Bill to have the strongest safeguards of any assisted dying law in the world, so I hope that she will join me in voting for amendment 9.

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

Rebecca Paul Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

That was a specific question to Mr Amin, but it is an important issue. Does anyone else wish to come in, briefly please?

Chelsea Roff: One thing I would like to highlight in our study is that all 60 people who died—young women, mostly—were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.

I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment. It is important not to make a false equivalence between mental capacity and mental health.

We could, for instance, have a person who has a prognosis of six months or less, but their wish to die is emerging from severe depression, from suicidality. We saw very high rates of suicidality and depression: 89% were depressed and nearly half chronically suicidal when they died. Physicians emphasised, still, that the wish to die was not emerging from a mental illness, despite them having diagnosed mental illness.

[Rebecca Paul (Reigate) (Con)]

Q My question is to Chelsea Roff. First, thank you for your written evidence, which I found extremely helpful. It indicates that in Oregon, California and Colorado, patients with anorexia have qualified as having a terminal illness. There have been instances of patients suffering with anorexia being described as terminal, and of treatment being withdrawn, in the UK itself. Is it accurate to regard these young women as suffering with a terminal illness? What changes to the Bill would you suggest to protect them better?

Chelsea Roff: Thank you for that question. No, I do not think it is accurate, but I have to emphasise that laws in other countries have expanded through clinical interpretation, not just legislative amendment. There are clinicians—a very small minority—who disagree and who have characterised anorexia by name as a terminal illness, but they have also said that eating disorders qualify because of the physical manifestation of the disorder. You cannot disentangle a mental disorder from its physical effects. They cite terminal malnutrition; we have identified 25 cases between California and Colorado where malnutrition was listed as the terminal condition. I cannot rule out whether that was anorexia or something like voluntary stopping of eating and drinking, but I worry that it is the physical manifestations that will be cited and, without a mental health safeguard in the Bill, that puts a whole lot of people at risk.

[The Chair]

Dr Griffiths or Professor Shakespeare, do either of you wish to comment, because you have not spoken yet?

Professor Shakespeare: If you look at clause 2, the definition of terminal illness is very clear:

“a person is not to be considered to be terminally ill by reason…of…having one or both of…a mental disorder”

or “a disability”. I think that would cover that case.

Chelsea Roff: May I add one sentence? I think you have left out an operative word in that sentence, which is “only”. It reads,

“a person is not considered terminally ill by reason only of”—

New Hospital Programme Review

Rebecca Paul Excerpts

Monday 20th January 2025 Commons Chamber

[Wes Streeting]

I am grateful to my hon. Friend for his question. I am not surprised that Conservative Members tried to shout him down. They want to silence criticism of their record because they are ashamed of it. That is a simple fact. He is absolutely right about his parliamentary neighbour, who sat around the Cabinet table of the notorious Liz Truss, even as she crashed the economy, and then has the temerity to turn up and lecture other people about the sound management of public money. These people have no shame whatsoever, and they will have no credibility until they sincerely and honestly apologise to the country for the mess they made.

I am very happy to talk through with my hon. Friend and his constituents why his project has been phased as it has. There are a number of constraining factors—not just resources, but other factors such as allocation of land, planning and so on—but I reassure his constituents that we will deliver. I also reassure his constituents that, since his arrival in this place, he has been absolutely dogged and determined in speaking up for them and lobbying on their behalf.

[Rebecca Paul (Reigate) (Con)]

I welcome the Secretary of State’s clarification on the timing of the new Sutton specialist hospital, which will serve my constituency. I am really pleased that the project is going ahead, although the delay is disappointing. The current situation at Epsom and St Helier university hospitals NHS trust is not sustainable. The trust currently runs duplicate services across two sites, which makes staffing incredibly difficult. The physical estate is deteriorating faster than it can be fixed, and some of the buildings are older than the NHS itself. Could the Secretary of State set out how he intends to reduce waiting lists in Reigate, Redhill, Banstead and our villages in the short term in the light of the delay to this project?

Puberty-suppressing Hormones

Rebecca Paul Excerpts

Wednesday 11th December 2024 Commons Chamber

[Wes Streeting]

The order relates to the use of puberty blockers by that particular group of patients for that particular purpose, where the evidence base is not sound and for which the Commission on Human Medicines has described the current prescribing environment as representing an “unacceptable safety risk.” Puberty blockers are safe and proven for use among children and young people for other conditions, including precocious puberty. Where we lack a sound evidence base and a safe prescribing environment, and where that medicine represents an unacceptable safety risk, is in relation to its use for that particular purpose for that particular group of patients.

[Rebecca Paul (Reigate) (Con)]

I welcome the statement and commend the Secretary of State for putting the safety and wellbeing of children first. The use of puberty blockers to treat gender dysphoria is—I will not mince my words—nothing short of a medical scandal, in my view, so I very much welcome his approach. He said that it is important that young people receive the right care from paediatricians and mental health professionals. Does he agree that no child should ever be told by a health professional that they were born in the wrong body?

[Wes Streeting]

It is important, particularly with this group of children and young people, that clinicians ask a range of questions to identify the nature of a child’s needs, and respond appropriately by providing holistic and evidence-based healthcare. That is the best way of turning around the horrendous statistics on the effects of gender dysphoria on children and young people, and it is how we will achieve better, healthier and happier outcomes for that cohort of patients.